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Transcript: Video 1

CIAN

Well, nobody really likes being labelled, I don't think. But at the end of the day, we kind of need labels to kind of-- so that we can know what people's needs are.

TERRY

If you're on benefits, you need some sort of description of what help you need.

CHARLENE

You know, we're just human beings trying to get on with our lives, you know? So why put a label on it, and make us feel 10 times worse with a label?

End transcript: Video 1

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Video 1

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In this first session of the course you will consider the question: what is a learning disability? You will meet several people who have been labelled as having a learning disability, and you will be introduced to some definitions on the topic.

You will then find out how many people in the UK have a learning disability, and the sorts of places they live.

Finally, you will consider the rights that people with learning disabilities have, and whether it helps people to be labelled as having a learning disability.

In this session you will explore:

what a learning disability is
the different labels that have been used to describe people with learning disabilities and how people feel about those labels
what life is like for people with more severe or profound learning disabilities
some basic facts about the lives of people with learning disabilities
people’s rights.

1 Being labelled

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

You will start by listening to a number of people with learning disabilities talking about their experiences of being labelled as having a learning disability.

Activity _unit2.1.1 Activity 1 Labels

Allow about 10 minutes

Watch this video clip of Shaun, Cian, Dayo and Phil talking about the labels that are used about them and other people with learning disabilities. How do people with a learning disability understand and make sense of these labels?

As you watch the film, make notes on:

the different labels that people mention (there are 18 of these);
whether they chose these labels, or if they were imposed by others;
how and why some labels become terms of abuse.

Download this video clip.Video player: Video 2 >

Video _unit2.1.1 Video 2

Transcript: Video 2

SHAUN

I've been called a retard. I've also been called spastic. I've also been called weird. So-- but I've also been called a bit cheeky, a troublemaker, which is more of an endearment word, which I like to say. So they're more endearment.

CIAN

Another label was a service user. Well, a learning-- a learning disabled person. Disabled. Autistic. Mentally challenged. Mentally deficient, which is an awful one.

DAYO

We're all just the same.

CIAN

Yeah, there were some really old labels that people used, like retard and spastic, and feeble-minded. Now they all seem like, and Mongoloid. They all seem like terrible things now. But just 50 odd years ago, people actually did seriously used to call people those kind of names.

PHIL

I believe my mum went back to the maternity hospital for just a checkup with Bernadette. And she was told that Bernadette was Mongoloid because that was the reference then. And--

CIAN

And they didn't call people those names to be horrible or nasty. It was just a word for them. Even the word imbecile I believe people used-- some people used to call people with learning difficulties. And people didn't usually mean it in a nasty way. It just became an abusive thing said by people.

I reckon in the future, the word special needs will be like the words spastic, or retard, et cetera, because these days, you get a lot of teenagers being abusive to people with learning difficulties saying ‘special needs, spastic’. And I don't think special needs-- now that is one that really gives me a bee in my bonnet. And I don't really want to be thought of a special just because I have autism. I would like to be special. We want to be ourselves for who we are, not what we are.

End transcript: Video 2

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Video _unit2.1.1 Video 2

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Discussion

Did you find all these labels?
Spastic, retard, imbecile, special needs, learning disability, mentally defective, mentally deficient, mentally challenged, autistic, weird, cheeky, trouble-maker, service-user, a learning-disabled person, mongoloid, learning difficulties, feeble-minded, disabled.
No one chose their label. Shaun quite liked ‘cheeky’ and ‘trouble-maker’, two labels which could apply to anyone, not just someone with a learning disability.
The memory of his sister Bernie being called ‘mongoloid’ by the hospital was clearly upsetting for Phil.
Cian explained that when the label is first used it is often not meant to be rude. But over time, even quite innocent sounding labels like ‘special needs’ become terms of abuse.

This very first activity has introduced one of the most controversial issues in learning disabilities, that of the words to use. This course has chosen to use the term ‘learning disability’, as opposed to others like ‘intellectual disability’ or ‘learning difficulties’. Some people believe that one of the reasons labels change so frequently is to escape the stigma that accompanies learning disability. But as Cian said, it hasn’t worked!

Later in this session you will look at the pros and cons of labelling. But first, some definitions.

2 What is a learning disability?

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

The previous section discussed how labels used about people with learning disabilites are controversial. But what exactly is a learning disability?

In this section you will be introduced to two recent definitions.

The definition in use in England (Figure 1) was adopted in 2001, from a White (Government) Paper called Valuing People.

Figure _unit2.2.1 Figure 1 The English definition of a learning disability

The definition in the Scottish Government’s Keys to Life strategy document (2013) is similar and a little clearer (Figure 2).

Figure _unit2.2.2 Figure 2 The Scottish definition of a learning disability

You can see from both of these definitions that there are four key elements to identifying a learning disability:

it is a lifelong condition
you have more difficulty than others in understanding things
you will struggle to learn new skills
you may need some help to manage your life.

People sometimes believe that a learning disability applies to people who score less than 70 in intelligence tests, known as IQ. However, the strategy documents are unanimous – it is not enough just to measure intelligence. An assessment needs also to take account of social functioning and communication skills – in other words, how well people manage their lives.

2.1 Learning disability categories

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

The population of people with learning disabilities is sub-divided according to how severe their learning disability is.

There are four categories:

Profound – people whose IQ is estimated to be below 20, who often have additional complex health needs, and who may need help to eat, move around, communicate and do personal care.
Severe – people who may use a few words or gestures to communicate, are often able to look after their own personal care, but who need assistance with money, cooking, shopping, and possibly mobility.
Moderate – people who can communicate on a basic level, and can carry out everyday tasks with support.
Mild – people who speak fluently and need just a little support, perhaps with budgeting or accessing employment. The people you met in Video 2 would be classed as mildly learning disabled.

Next you will consider learning disability as a social condition.

3 Medical or social?

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

You might have come across debates about whether a learning disability is a medical or a social condition.

You already know from the definitions given in Section 2 that a learning disability is lifelong, meaning it cannot be cured. Some people are adamant that disability is socially created as society is organised for people who are not disabled. This argument is known as the social model of disability.

Box _unit2.3.1 Box 1 The social model of disability

The phrase ‘social model of disability’ was coined in the 1970s by UPIAS (Union of the Physically Impaired Against Segregation), a movement of physically disabled people, who said that people were not disabled by their bodies or minds, but by how they were treated in society. They said that society needed to reduce the barriers they experienced. You may be familiar with these ideas, as they have led to facilities like accessible toilets, hearing loops, ramps to help people in wheelchairs onto buses, etc.

Figure _unit2.3.1 Figure 3 The social model of disability led to a number of positive changes for disabled people

Link: A learning disability friendly society?

UPIAS said the opposite of the social model is a ‘medical model’, which places the problem within the individual. The medical model suggests it is because people’s bodies do not work well that they are excluded – therefore it is their own fault.

Like the physical disabilities UPIAS was talking about, learning disability is also not a medical condition. There is no ‘cure’, no drug that will alleviate it. If it can be cured it is not, by definition, a learning disability. Where people with learning disabilities do need medical help, it is frequently because of other, associated conditions that they might have, like epilepsy.

You could argue that people with learning disabilities are disabled by society. If people cannot communicate in speech, if they cannot read or write, they will certainly find it hard to take part on equal terms with people who can – in competing for a job, for example.

Activity _unit2.3.1 Activity 2 A learning disability friendly society?

Allow about 5 minutes

Click the link below to answer the poll on what you consider important in order for a society to be friendlier to people with a learning disability.

Once you have submitted your choice you can then see how others have voted.

Much of what services and supporters do is based on ideas associated with the social model; to try to create an environment which will minimise the impact of the learning disability. It won’t go away, but lots can be done to make life enjoyable. It is this you will consider next.

4 Listening to people who do not use words to communicate

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Three of the people you met in Video 2 in Section 1 – Shaun, Cian and Dayo – would be labelled as having mild or moderate learning disabilities. They can lead their lives with some support from their families, friends or paid staff. They also have views on what they want their lives to be like, and can share them.

However, people with profound or severe learning disabilities cannot communicate as directly. Finding out what support they need to enjoy life requires imagination and empathy. Watch this short clip of Ronke, a support worker, who explains how she found out that her ‘client’ loves to invite members of her family to Sunday lunch.

Download this video clip.Video player: Video 3 >

Video _unit2.4.1 Video 3

Transcript: Video 3

RONKE

Some people might think it's hard work to deal with the family, so they just try and avoid any sort of communication. I think that's rude. I think you should try your best to make sure that person is OK with everything as opposed to avoiding the situation for example.

WOMAN

Can you put it over there?

RONKE

My client was always eating by herself and I know that she used to enjoy having a good chat at dinner times and things like this. So I thought it'd be a good idea to encourage her family to hang around for dinner. So they sat down and they started enjoying it. And now my client was like, you know, my brother was asking where are you? Like he wants his Sunday dinner next time he comes. You know, it's not something that we have to do. It's not in place, it's not part of her care plan. It's just something I thought was nice for her because she used to enjoy those times sitting around a table.

WOMAN

A little bit of gravy. Without pouring out [INAUDIBLE].

RONKE

I just think it's nice for my client because she's not always the happiest bunny and it's nice to see her when she's happy.

End transcript: Video 3

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Video _unit2.4.1 Video 3

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Were you impressed with the way Ronke pieced together little bits of information to find a way to make her ‘client’ happy?

In the next activity, you will try using your own imagination and empathy to work out how to ‘listen’ to people who do not use words to communicate.

Activity _unit2.4.1 Activity 3 Listening to people who do not use words

Allow about 10 minutes

Video 4 shows short clips of people who do not use words to communicate.

As you watch it, note down three things you could try to help you find out what they enjoy doing.

Download this video clip.Video player: Video 4 >

Video _unit2.4.2 Video 4

Transcript: Video 4

NIROO

Bhavin is 26 years old. He's been living at home until last December. He has autism, epilepsy, and behaviour that challenges.

JIGNESH

One of the first memories I have of Bhavin-- I remember seeing him as a baby and thinking, I'm looking forward to seeing him grow up and to develop into the person that I am. Unfortunately, I wasn't to be. I wasn't going to discover how he was going to learn to speak, and how to understand other people, and the natural development the average individual takes.

NIROO

We're disabled by association because wherever you go, they look at you, you know? We felt we were not part of the community.

JIGNESH

There's many things I would see a lot of my friends and their family’s doing, which actually we as family could never do. We could-- very rarely did we ever go away as a family together.

NIROO

Sometimes he can be very aggressive. He can be very aggressive when he's agitated. And he has obsessions with papers, flowers, collection of key rings. And if he can't get it, if we don't allow him, then mommy gets the kick. You know, it backfires.

WOMAN

I have support. Thank god for that. And they know my daughters for a long, long time. It's not from the first time you can trust people. But when you see they look after your son or daughter, after that, you give your trust.

MAUREEN

We are the thing that changes in people's lives. Families aren't. Families stay. We come and go. Some people come to us in their 30s or 40s. They've had a whole life before they got here. And looking at a social work file can give you so much. But actually sitting down with someone who's been there and been the active and responsible person for that period of time is the best way to get information.

WOMAN

So if you don't take time to find out, you are more ready to jump into conclusions. But it’s you that needs to make effort. When you show effort to communicate with them, they see that you carry them along and they feel valued.

End transcript: Video 4

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Video _unit2.4.2 Video 4

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Answer

Here are some ways you could find out more about the people you met in the video.

Spend time with them at different times of the day.
Try lots of different experiences and observe how they respond.
Find out from people who know them well what they enjoy doing and who they like to spend time with.

Clare, whose daughter Elinor appeared near the end of Video 4, explains how she found out what Elinor likes doing.

Elinor loves doing lots of things – music, gigs, swimming, food. How do we know? By her behaviour and responses. By the sensual delight she takes in the feel of water in the swimming pool. By her smiles when songs she likes are played. She gives us clear messages.

In the next section you will think more about how the lives of people with severe or profound learning disabilities can be improved.

4.1 Improving the lives of people with severe or profound learning disabilities

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

What other things might help to improve the lives of people who have higher support needs?

Activity _unit2.4.2 Activity 4 Changing society?

Allow about 10 minutes

Let’s go back to the question about changing society, this time with a focus on people with severe or profound learning disabilities.

Watch Video 5, about Marvin, narrated by his mum. Then consider what changes to society could improve Marvin’s quality of life by answering the poll below.

Download this video clip.Video player: Video 5 >

Video _unit2.4.3 Video 5

Transcript: Video 5

MARGARET

I came from the Caribbean. I was born in the Caribbean. I came here very young. And I had Marvin. When he was born, everything seemed OK. And later on, he wasn't reaching the milestones, which I thought he would have done. And I approached the health visitor and they said, ‘No problem, some kids are slower than others’.

And they started doing more investigation, like speech therapy and stuff like that. At that time, he was about four years old. Coming on to four. So all this time, I've been shunted from pillar to post not knowing what's wrong with him. And eventually, we went to Great Ormond Street. One of these doctors said that he was autistic.

It was a real struggle. It was very stressful for myself. At that time, his dad, frustrated with his problem having a child like that, is gone. So I'm a single parent then. We all have this problem. The partner is always the other way.

My son is 35. And at 35, he'd probably be a married person by now. But because he is disabled, he's still like a child. He cannot handle anything. Any correspondence, money. He can't handle that. So you're totally-- he's totally dependent on someone.

Now I was that person who did everything for him. And he's gone somewhere else. And someone else-- you're not sure the other person is doing the same thing. It's like a job for them. So they do what they can and they are off home. For the rest of his life, when I'm gone, he'll still have to have someone to be dependent on.

End transcript: Video 5

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Video _unit2.4.3 Video 5

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Click the link below to vote for the change you think would most improve Marvin’s quality of life

Link: Changing society?

Once you have submitted your choice you can then see how others have voted.

In this section you have thought about supporting people who are not able to tell us what would make their lives full and enjoyable, and how the social model of disability might apply to them.

In the next section you will learn how many people have a learning disability and where they live.

5 How many people have a learning disability?

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

This might sound like an easy question, but there are no easy answers because the definition is very broad. It includes Shaun and Cian, who need only a little help to live a very full life, as well as people with severe or profound learning disabilities who need 24-hour care.

There have been attempts to count the number of people with a learning disability in the countries of the UK. However, it is important to note that the four nations capture this data independently and use different definitions of the population, which makes it difficult to compare figures. Some recent figures for England are given in Table 1.

Table _unit2.5.1 Table 1 Learning disability statistics in England

	England (2015 figures)
No. of people with a learning disability	1,087,100
People supported long term by social services	124,000 (11% of the estimated adult learning-disabled population)
Number of people identified by GPs	252,446 (23% of the estimated adult learning-disabled population)
Children with Special Educational Needs	70,065

(Public Health England, 2016)

These figures, however, are unsatisfactory for a number of reasons, not all of them immediately evident. For example, the figures are not collected regularly and there is no universal system for labelling adults. Also, the figures are not broken down into the four sub-categories you looked at in Section 2.1, meaning the data is quite vague. Nevertheless, they do reveal some important points.

There are a lot of people with a learning disability…
…only a minority of whom are supported by social care services – people like Dora, Bhavin and Elinor whom you saw in Video 4.
The majority of adults with a learning disability are more like Shaun, Cian, Charlene and Terry – people who get by with little or no help from social services.
GPs identify more people than are supported by social services.

Many people who were labelled as having special needs at school do not continue to have the label learning disability as adults. Chris Hatton, a senior academic, argues in his blog that as money has got tighter with austerity policies since 2010, fewer people are being labelled as having a learning disability – because there are no services to support them (2019).

6 Where do people with learning disabilities live?

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Box _unit2.6.1

In answering this question, you will not consider children as most live with their families.

In 2015, there were 124,000 people receiving long-term support from a local authority in England because they had a learning disability. We know where they live because the state has some responsibility for them. However, we don’t know about the others – no one is counting them.

Because they need support, many of the 124,000 people live in locations where they can access help, from family or from paid staff.

View larger image

Figure _unit2.6.1 Figure 4 Where people with learning disabilities live in England

You may have noticed that these figures only add up to 92%, which means we do not have details for where the remaining 8% of people live.

In the next activity you will compare the data from England with that of Wales.

Activity _unit2.6.1 Activity 5 Where do people with learning disabilities live in Wales?

Allow about 10 minutes

These are the figures for where people with learning disabilities lived in Wales, in 2017/2018:

Own home: 16%
With parents or family: 53%
A foster home: 2%
Lodgings / supported living: 21%

(We do not have details for where the remaining 8% of people live.)

What are some of the most striking differences between England and Wales?

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Discussion

You may have noticed that many more people with learning disabilities live with their families in Wales than in England (61% compared with 36%). The Wales figures do not explicitly show anybody living in a registered care home, which is another big difference compared to England. It is possible that they are included in the lodgings / supported living categories, and some of the small numbers living in health service accommodation, but it is not possible to be sure. This highlights the difficulties in comparing data across different countries.

In this section you have considered how many people have a learning disability, and the sorts of places where they might live as adults.

Given the relatively small number of people with a learning disability supported by local councils (remember there are over one million people living with a learning disability in England), you might wonder why bother to use labels at all. It is this that you will come to next.

7 To label or not to label

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

You have seen how difficult it is to decide how many people have a learning disability as the definition is broad and imprecise. Although people are labelled at school so they can get support, once they leave school, there isn’t a clear mechanism for labelling them unless they are for any reason referred to a psychologist or psychiatrist.

Why label?

Like many issues in learning disability, the question of labels is a fraught one.

Many people with learning disabilities question the value of the label and some go as far as to blame the label for some of the difficulties they experience. Remember Charlene in Video 1 saying the label makes her feel ten times worse?

‘Label jars, not people’ has long been a popular slogan of the civil rights movement of people with learning disabilities.

Figure _unit2.7.1 Figure 5 People with learning disabilities have criticised the use of labels for many years

On the other hand, there are arguments in favour of labelling. Academic statisticians argue that it is vital to count how many people there are who are likely to need support, who will need housing when parents become too frail to care for them, and who should be flagged as needing special provision when they visit the GP or other health services.

Clare, the mother of Elinor, has strong views on this:

If I am asked about Elinor I don’t say ‘she is labelled learning disabled’, or ‘she has a cognitive impairment’, I say she is learning disabled or has a learning disability. I need a way to describe her such that I don’t have to go into complicated explanations as to why she hasn’t gone to university, got a job, got a relationship, etc., and why my life turned out the way it has. Also it is the name, the description, the ‘label’ that unlocked the support she, and I, needed for her to have a good life.

Activity _unit2.7.1 Activity 6 Pros and cons of labelling

Allow about 10 minutes

Click the link below to answer the poll on whether you think people should be labelled as having a learning disability.
Link: Labelling
Once you have submitted your choice you can then see how others have voted.

Now watch this video of Charlene and Terry discussing labelling. As you watch, note down up to three positives and three negatives of having a label given by Charlene and Terry in the video.

Download this video clip.Video player: Video 6 >

Video _unit2.7.1 Video 6

Transcript: Video 6

TERRY

Sometimes it can be a label. But other times it’s a description; depends on who's saying it and what for.

CHARLENE

Learning disability doesn't really get talked about or anything and stuff. So to me, it's more important that it gets talked to a lot more because to me, I don't see it being talked a lot more. Well, to me, labelling is very-- not very nice to be labelled. We're not labelled from what we've got. There's no need for that.

We're just human beings trying to get on with our lives. So why put a label on it, and make us feel 10 times worse with a label? And like Terry said about we're just slow. Just need support. Don't give us a label. That your this label, you should be fit into that category and stuff. Screw that up and throw that away.

TERRY

If you're on benefits, you need some sort of description what help you need. and what support will be provided for you. But other times, they're not very good. And we're not tin cans. We are human beings. And we're just normal.

End transcript: Video 6

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Skip transcript: Video 7 A timeline of rights

Video _unit2.7.1 Video 6

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Answer

Positives:

Learning disabilities need to be talked about more and labels are a way of opening up the conversation.
You need categories if you are on benefits.
People with learning disabilities need help and the label can point out who needs that help.

Negatives:

It makes you feel bad - ‘You feel ten times worse’
It sets you apart from others - ‘We are just humans trying to get on with our lives’
It is misleading and can affect other people’s views about what a person can and can’t do – ‘We’re just slow, screw it up and throw it away’.

Charlene and Terry have strong views on labels and at times have different opinions to one another, which highlights how tricky the subject is.

Click the link below to answer the poll which again asks your position on labelling. You should tick the three statements you most agree with.
Link: Labelling (II)
Once you have submitted your choice you can then see how others have voted.

Answer

1 to 4 are arguments against labelling, 5 to 9 are arguments in favour. Were you conflicted?

One of the difficulties is that you don’t know whether the label unlocks any support. Only 11% of the adults who have been counted as having a learning disability in England get long-term support from Councils. Others manage without such support.

In this section you’ve discussed whether labels are a good thing. This is a debate that you will return to throughout this course.

The next section is about human rights. The labelling discussion has a bearing on this, and you will return briefly to this discussion in the final section of Session 1.

8 Human rights

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

If people with learning disabilities are labelled as such, does this mean their rights as humans are undermined? In this final part of the session, you will consider this question.

Activity _unit2.8.1 Activity 7 What are people's rights?

Allow about 5 minutes

Choose the option from the list below which you think is correct.

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Discussion

Did you get this answer right? People with learning disabilities are entitled to exactly the same rights as everyone else. How did people obtain these rights? Watch the animation below to find out.

Download this video clip.Video player: Video 7 >

Video _unit2.8.1 Video 7 A timeline of rights

Transcript: Video 7 A timeline of rights

INSTRUCTOR:

1948. The Universal Declaration of Human Rights. This was written at the end of the Second World War. It set out, on a global scale, fundamental human rights. The declaration includes such things as: all humans are born free and equal; everyone has a right to life, liberty, and security of person; everyone has a right to education; everyone has a right to freely participate in their community; everyone has a right to a family life.

The Universal Declaration of Human Rights inspired the 1950 European Convention on Human Rights. The European Convention on Human Rights set up the European Court of Human Rights, which meant that people in Europe can apply to the court if they believe their rights have been breached. The Universal Declaration of Human Rights was always intended to cover everyone, but it became clear that disabled people's rights were often ignored or violated. So in 2006, a new UN convention was drafted that set out the rights of disabled people.

The UN Convention on the Rights of Disabled Persons came into force in 2008. Since then, most countries around the world have signed up to it in some form. The convention doesn't give disabled people any new or different rights; it makes clear that disabled people are entitled to all the same rights and freedoms as everyone else. It says that people cannot be discriminated against because of disability. At the end of this session, you can find a link to an easy read version of the convention, which sets out all of these rights.

While the UN Convention on the Rights of Disabled Persons is a very powerful statement of rights, it is not a law. However, in the UK, there is a law that protects the rights of people with learning disabilities in the same way it protects the rights of everyone else. This is the Human Rights Act 1998. This act means that if someone's rights have been breached, they can seek justice in a British court. It also means that all public bodies, like courts, police, local authorities, hospitals, and publicly funded schools, must respect your rights. In addition, there is the 2010 Equality Act. This act ensures that people are protected from discrimination and unfair treatment. It promotes a more fair and equal society. The Equality Act covers all disabled people, including people with learning disabilities.

End transcript: Video 7 A timeline of rights

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Video _unit2.8.1 Video 7 A timeline of rights

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This animation shows that people are entitled to the same rights as other people. However, lots of things can stand in the way of people exercising their rights. You will look at these next.

8.1 Challenges to upholding rights

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

While in law people with learning disabilities have the same rights as other citizens, this is not always the case in day to day life.

Activity _unit2.8.2 Activity 8 The battle for equal rights

Allow about 5 minutes

Watch this video of Dr Lee Humber and Dr Simon Duffy talking about the challenges of ensuring people with learning disabilities have equal rights.

Download this video clip.Video player: Video 8 >

Video _unit2.8.2 Video 8

Transcript: Video 8

LEE HUMBER

There are inequalities in terms of the amount and quality of education that's available for people who-- children early on who get a diagnosis, if you like, of learning disabilities. So I think it starts in school. But then, from then on, that kind of, if you like-- for want of a better word-- label follows them through life so that there are housing inequalities. Often the best that people with learning disabilities can hope for is some kind of supported living thing. And that's getting worse and worse as we speak.

Certainly in employment, there are massive inequalities. So people with learning disabilities find themselves on the edges of poverty throughout their life really, so the inequalities are right across the board I'd say.

SIMON DUFFY

Through the course of human history, societies have dealt with the fact that human beings are different in very many different ways.

I'm Dr. Simon Duffy. I'm the director of the Centre for Welfare Reform, working to reform the whole welfare state, but particularly around the experiences of people with learning difficulties. There's a whole range of problems that people face, number one being that people don't necessarily know they have rights, don't necessarily know they have freedoms. And lots of the things that are going on for people, particularly with more severe disabilities, kind of take away even people's sense of information or capacity.

So for instance, you may go to a special school where the expectations placed around you are very limiting. The notion might be that, well actually, you'll go from this special school to a day Centre or a college, that you might stay at home with your family. And then you may move into a care home. I mean, that's a stereotype.

But I think a lot of the time, the expectations in and around the schooling system, in and around the information families hold, in around the way society thinks about people with learning difficulties is kind of settling there. And if you look at how the money is spent, it's still broadly there. So those expectations are real, but they're not good enough. They're not the kind of expectations that we want for our sons and daughters or for our fellow citizens.

End transcript: Video 8

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Video _unit2.8.2 Video 8

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Lee and Simon drew attention to a number of things that can prevent people having equal rights. Write down at least three of them.

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Answer

The barriers Lee and Simon identify include:

lack of education
poor housing
lack of employment opportunities
poverty
low expectations
people not knowing they have rights
government money being spent on the wrong things.

People with learning disabilities definitely have equal rights in law, but may find it difficult to realise their rights. Later in this course, you will explore why this is so.

If you want to know more about the Human Rights Act, click here for a poster produced by the British Institute of Human Rights.

9 This session's quiz

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Well done – you have reached the end of Session 1. You can now check what you’ve learned this session by taking the end-of-session quiz.

Session 1 quiz

Open the quiz in a new tab or window by holding down Ctrl (or Cmd on a Mac) when you click on the link. Return here when you have finished.

10 Summary of Session 1

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

In Session 1 you have heard about the experience of having a learning disability from people who can speak about it for themselves.

You have also considered how it is possible to find out what life is like for people who literally do not have a voice, who cannot communicate in words, but who can communicate through their behaviour, facial expressions and other means. People who know them well, often their families, become skilled at interpreting these types of communication.

You have also learned about the definition of a learning disability, considered some of the challenges of knowing who has a learning disability, and thought about the pros and cons of labelling.

Finally, you have begun to consider the question of rights, and some of the barriers to realising these rights for people with learning disabilities.

In this session you explored:

what a learning disability is
the different labels that have been used to describe people with learning disabilities and how people feel about those labels
what life is like for people with more severe or profound learning disabilities
some basic facts about the lives of people with learning disabilities
people’s rights.

In the next session you will discover more about the changing views of learning disability over time, which explains in part why rights and labels are such important topics.

You can now go to Session 2.

Want to know more?

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Balance of Rights video: https://vimeo.com/ 262190581
QCF Introduction to Learning Disabilities ‘Understanding the Nature and Characteristics of Learning Disabilities’: https://nadp-uk.org/ wp-content/ uploads/ 2015/ 02/ QCF-intro-to-LD-sample.pdf
Social History of Learning Disability Research Group Education Resources Activities 1 and 8: http://www.open.ac.uk/ health-and-social-care/ research/ shld/ education-resources
EasyRead version of the UN Convention on the rights of disabled persons: https://assets.publishing.service.gov.uk/ government/ uploads/ system/ uploads/ attachment_data/ file/ 345108/ easy-read-un-convention.pdf
Chris Hatton’s blog provides up to date analysis of learning disability statistics – including where people live: https://chrishatton.blogspot.com/ 2019/ 01/ where-are-we-at-with-social-care-for.html
If you want to know more about the Human Rights Act, click here for a poster produced by the British Institute of Human Rights.

Introduction

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

In this second session, you will learn how ideas about learning disabilities have changed over time. It’s a little known history, but an important one if you are to understand the lives of people with learning disabilities today.

You will learn about the recent past through watching an animated timeline, Present in My Past, made by Purple Patch Arts, and through studying the lives of two women – Mabel and Bernie. Both Mabel and Bernie were born in the mid-twentieth century and lived through momentous changes in the way learning disabilities are thought about.

To start this session watch this video which introduces Mabel Cooper.

Download this video clip.Video player: Video 1 >

Video 1

Transcript: Video 1

MABEL COOPER

I think this story is just telling people that it's wrong to shut people with learning difficulties away.

[MUSIC PLAYING]

I was born in 1944. I didn't really know my mum. I was taken away when I was four weeks old because they said my mum was begging on the street. I was put into care. My mum was also put into care. She stayed there for two months and then ran away, and they didn't see her anymore after that.

When I was 11, I went to St. Lawrence's Hospital which housed 2,000 people with learning difficulties. They called us hurtful names like idiots, moral defective. When I went to St. Lawrence's, you could just hear the noise outside, the screaming and what have you. When you're 11 and you go into these big buildings, into something like St. Lawrence's, it's very frightening. You'd think you were going to a madhouse because of the noise.

End transcript: Video 1

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Video 1

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Looking at this recent history, you will begin to understand why human rights have been problematic for people with learning disabilities, and why there was a need for a special UN Declaration for Disabled People.

In this session you will explore:

the different ways learning disabilities have been viewed since the 18th century
life for people with learning disabilities who lived in institutions in the 20th century
life for people with learning disabilities who lived in the community in the 20th century
how learning disability policy has changed over time.

The history you will cover in this session is a western one, applying to the UK, and to some extent other English-speaking countries like the USA, Canada, Australia and New Zealand. It would be a different story if other parts of the world were considered; regrettably there is not time in the course to cover this. If you wish to find out more, you will find ideas in the ‘Want to know more?’ section at the end of the session.

1 From the 1700s to the mid-twentieth century

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

The Industrial Revolution, which started in the UK in the late 1700s, is the name given to the process in which society changed from being primarily agricultural to one where people migrated to live in towns and worked in factories.

Before the Industrial Revolution there were many jobs that could be done by people with learning disabilities, such as scaring crows, caring for animals and running errands. First, listen to historian Simon Jarrett in Video 2 who argues that society was far more inclusive of people with learning disabilities in that period.

Download this video clip.Video player: Video 2 >

Video _unit3.1.1 Video 2

Transcript: Video 2

SIMON JAMES

The job for a historian to try to unpick is, are we always talking about the same group of people over time? The group of people we call people with learning disabilities today, are they the same as the group of people we called idiots in the 18th century? And I think what we learn is that, although there is inevitably some overlap, these things change as society, changes. And who they choose to define as the out-group of people with learning disabilities or whatever also changes over time.

People had a very strong idea about what an idiot looked like. Because they believed that your face and your appearance reflected your inner characteristics.

NARRATOR

In the 18th century before the French Revolution, people were born into what they believed was their God-given place in society. No one should seek to change their life. To be born rich or poor was an accepted fate. But to be born poor or lacking the mental faculties did not mean that your place in society was without regard.

The Victorian caricaturist James Gillray captured the significance in his drawing "Very Slippy Weather."

SIMON JAMES

Firstly, this is a depiction of everyday life in the streets of late 18th, early 19th century London. And he's there. He's not in an institution. He's not being whipped or abused or badly treated. He's slightly separate from everybody else, but he's a part of his community. And he has a stake in the society that he lives in.

The second thing is that, although he's being portrayed as a slightly comic figure, the main comic figure is the very intelligent intellectual gentleman who is actually lacking so much in common sense that he slips on the ice when he's looking at his thermometer to try to find out what the weather is like. And I think what people had a sense of in the 18th century was that there are different types of intelligence. And there are different types of people. There are other types of sense, which can actually create a place for everybody in the society that we live in.

End transcript: Video 2

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Video _unit3.1.1 Video 2

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According to Simon, people in the 18th century had different ideas about intelligence. They believed that there were different types of intelligence, all of which were equally valuable. They believed that they could identify a person they called an ‘idiot’ by what he or she looked like, but that didn’t mean s/he was shunned or shut away. For example, they were less a figure of fun than the clever wealthy man who slipped on the ice while reading his thermometer because he lacked common sense, in Gillray’s cartoon (Figure 1).

Figure _unit3.1.1 Figure 1 Gillray's cartoon 'Very Slippy Weather' shows a man with learning disabilities in the background but the figure of fun is the clever man who slipped on the ice

However, as the Industrial Revolution made paid work more mechanised, so people with learning disabilities found it increasingly difficult to fit into the workforce. It was this that made them into a ‘problem’.

Activity _unit3.1.1 Activity 1 Learning disabilities timeline – 1700s to 1950

Allow about 10 minutes

Watch Video 3, which shows an animated timeline of the main events in learning disability history, then answer the questions below.

Download this video clip.Video player: Video 3 >

Video _unit3.1.2 Video 3

Transcript: Video 3

NARRATOR

The Industrial Revolution began in the 18th century and brought many machines that were tricky to operate. If you couldn't operate the machines, you couldn't work and earn money, and so had to be looked after. One choice was to go into the first type of institutional care, the workhouse. It wasn't a good place to live.

In 1855, the first purpose built asylum, the Royal Earlswood Asylum for Idiots was opened. The aim of the early asylums was to train and educate people with learning disabilities. The queen's cousins, Katherine and Nerissa Bowes-Lyon lived in the Royal Earlswood hidden away. It was here also that John Langdon Down first described the condition that is now known as Down syndrome.

From the beginning of the 20th century, attitudes towards people with learning disabilities began to change. They were now seen as dangerous, especially the women. In 1904, Sir Francis Galton defied the science of eugenics, which stated that only the fit and healthy should be allowed to have children. This idea was to have a serious and terrifying impact on people with disabilities.

A year before the start of the First World War, the Mental Deficiency Act of 1913 meant that people with learning disabilities could be made to live in institutions even if they didn't want to. In these places, men and women were kept apart to make sure they didn't have any children. Many never returned to their own homes and families.

Negative attitudes towards people with learning disabilities weren't just here in Britain. Around the same time in America, people were only allowed to get married if they had a certificate to say they were normal and well. It was also common practice in some countries such as Sweden to stop people with learning disabilities having children by sterilising them. This is still carried out in Australia today.

But things were about to get much worse in other parts of the world. In Hitler's Nazi Germany between 1939 and 1945, doctors and nurses killed thousands of children and adults with learning disabilities in hospitals and clinics. They were said to be useless eaters and have lives unworthy of life. They were starved, given drugs, or gassed. And some were experimented on.

After the horrors of the war came some hope. Judy Fryd, the mother of a child with a learning disability set up an organisation called the National Association of Parents of Backward Children. This later became MENCAP. In 1946, the NHS took control of the institutions. From then on, they were called hospitals.

At the beginning of the 1950s, there were thought to be 55,000 people with learning disabilities living in hospitals in England and Wales. That's more people than you'd find in some small towns and cities in England. And in 1948, things appeared to be improving further with the United Nations adopting the Universal Declaration of Human Rights. Article 3 states that everyone has the right to life, liberty, and security of person.

As Elvis Presley's fame grew, a report published by the National Council for Civil Liberties in 1950 said that the living conditions of those in hospital was very poor and that patients were often stopped from leaving because they were needed for work in the hospital. Some didn't even have a learning disability. They told a story of one lady who had to live in an institution because she didn't know how many feathers were on a chicken.

End transcript: Video 3

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Video _unit3.1.2 Video 3

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The Mental Deficiency Act brought in provisions for the institutional treatment of people with learning disabilities in the UK. In what year was it introduced?

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In some countries, people with learning disabilities in the 20th century were not permitted to marry, or have children, true or false?

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How many people with learning disabilities were estimated to be living in institutions in England and Wales in the early 1950s?

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You have just covered two centuries in a very short time! To find out what some of these changes meant for people, you will be following the stories of two women, Mabel and Bernie, both born in the mid-twentieth century. In the next section you will learn more about the history of learning disability institutions.

2 The institutions

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

The institutions set up after the 1913 Mental Deficiency Act dominated the lives of many people with learning disabilities and their families for much of the 20th century. As the narrator in Video 3 says, about 55,000 people were housed in them in the 1950s.

We know a lot about life in these institutions because of people like Mabel Cooper, once a patient in St Lawrence’s, Croydon. Mabel became a campaigner against institutions after she left and helped to spread the word of what it was like to live in an institution. She was awarded an Open University Honorary Degree for her work in 2010.

Figure _unit3.2.1 Figure 2 Mabel Cooper, pictured on the right, receiving her honorary degree

Link: Long-stay mental deficiency hospitals in England, Scotland and Wales

In them days if you had learning difficulties or anything that's where they used to put you. They didn't say, 'Oh, you could go into a house and somebody would look after you.' They would just say, 'You, you've gotta go into a big hospital' and that's it. Years ago, if you wasn't married and you had a baby, that was a disgrace and they would say, 'Oh the mother goes to a workhouse or a loony bin' as they had in them days, or the mother went into a workhouse or a loony bin and the child was put in care. I think that's why there was more women.

Mabel Cooper.

Mabel explains that it was all about keeping men and women apart so they could not have children. This was because it was believed that learning disability was inherited, passed down the generations. Therefore it was deemed necessary to stop learning-disabled people having children.

This is known as the science of eugenics, as mentioned in Video 3, which you watched in Activity 1.

2.1 The geography of institutions

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Between the end of the nineteenth century and 1970, numerous institutions were created to house thousands of people with learning disabilities. Institutions and hospitals (or 'long-stay' hospitals) refer to the same thing. They were places where lots of people with learning disabilities were forced to live together. Most have now been demolished or converted, often to luxury private accommodation.

Activity _unit3.2.1 Activity 2 Find your local institution for people with learning disabilities

Allow about 10 minutes

Find out where institutions in your area were located by clicking on this interactive map. You should open the link in a new tab by pressing Ctrl (or Cmd on a Mac) when you click on the link.

Once you find it, you could go and look to see what, if anything, remains of these institutions. Is there anything to tell you that this was a place where several thousand people spent their lives, and died? In many places there are no memorials.

Figure _unit3.2.2 Figure 3 (a) Cemetery at Leavesden Hospital, Herts; (b) a male villa at Prudhoe Hospital, near Newcastle

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2.2 Life in an institution

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

To find out about living in institutions, you will now turn again to Mabel Cooper. Mabel was born in 1943 and lived in institutions for much of her early life. In later life Mabel became a campaigner against institutions and joined The Open University’s Social History of Learning Disability Group. This gave her the opportunity to tell her story, and to find out more by looking at her care records. In the next video in Activity 3, Mabel talks you through her experiences, starting with how she came to be in the care system in the first place.

Activity _unit3.2.2 Activity 3 Getting into the care system

Allow about 15 minutes

Watch this video in which Mabel describes how she came to be in the care system and note down the reasons she gives.

Download this video clip.Video player: Video 4 >

Video _unit3.2.1 Video 4

Transcript: Video 4

MABEL

You see, years ago, I didn't talk. I only said yes or no. Only because they used to just keep saying "shut up" all the time. I'm Mabel. I was taken from Mum when I was three weeks old because Mum was begging on the street. My grandfather didn't like the man she was going out with and said, you can't live here if you're going to marry this man. They said, well, you can't have a baby on the street.

The police took me away from Mum. And I was put in all these different homes. And Mum was put in Darenth Park. So I didn't see Mum again.

So I went to Bedford's home run by nuns off and on. And they said, sorry, so you can't stay here either. And then I went to St. Lawrence's. Because I went up to this place in town hall-- I think it was town hall-- to have a test to see how bad the learning disability is. And they said, you need care for the rest of your life. You need some sort of help for, you know. But I thought, how did they know that at that age?

End transcript: Video 4

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Video _unit3.2.1 Video 4

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Answer

Mabel’s mum was begging, so was homeless with Mabel as a baby. When they were separated, Mabel was put into children’s homes where she took a test and was told she needed care for the rest of her life.

Mabel remained in an institution until she was in her mid-forties.

Did Mabel’s story shock you? Maybe you think that happened a long time ago, and that it’s different today. Unfortunately, even today there are people who get caught up in the care system and are housed far from their families. You will learn more about that in Session 8.

2.3 Life in St Lawrence's hospital

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Mabel spent many years in St Lawrence’s hospital. In Video 5 in the next activity you will hear her describe her life there.

Activity _unit3.2.3 Activity 4 Living in St Lawrences

Allow about 15 minutes

Watch the video below and note down the contrasts Mabel makes between her life at St Lawrence’s and her life in her own home.

Download this video clip.Video player: Video 5 >

Video _unit3.2.2 Video 5

Transcript: Video 5

MABEL COOPER

When you are 11 and you go into these big buildings, into something like St. Lawrence's it's very frightening. You'd think you were going to a madhouse because of the noise. I didn't like it really, only because it wasn't like a family home really. They just used to shout and pull you around. I don't like being pulled about.

The wards were this big. They were long, as long as this.

GLORIA FERRIS

They were massive.

MABEL COOPER

Because they were long. And the beds were that close together. And in the daytime you wasn't allowed to sit on your bed.

GLORIA FERRIS

We didn't have any privacy.

MABEL COOPER

No privacy, because if you went into the bathroom, people could get into it. If you imagine being in a prison and the people keep coming in and out, in and out, that was just the same. And they had bars up.

MABEL COOPER

We didn't have any of our own clothes. They used to have a big cupboard in the wards. And you would just help yourself. If you had one dress on one day, and then the next day somebody else would have it on. Because it had gone to the laundry and come back again. I find now it's lovely because I can just wear my own, and nobody else is going to wear them.

At the time, there was a great fear that we would have babies. So men and women were separated. Every Tuesday at 7:00 they would all go down to the dance hall, the men one side, the women the other. And in the middle there was staff. The men got up and asked some of the ladies to dance. They danced all the way around the staff. But when the music was finished, the men had to go back one side and the women back the other. Because you couldn't mix.

End transcript: Video 5

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Video _unit3.2.2 Video 5

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Answer

Mabel noted that in hospital she had no privacy or even her own clothes. She described it as being like a prison and noted how she was ‘pulled about’. The most significant contrast Mabel found between her life at St Lawrence’s and her life in her own home was being able to choose what to wear.

Mabel finally left St Lawrence’s in the 1970s. She died in 2013. You will return to Mabel’s story later in this session, but you will now meet Bernie, born only seven years later than Mabel, but whose life took a different turn.

3 Life in the community

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Bernadette Lee, or Bernie, was born in 1950, in Watford, Hertfordshire.

Unlike Mabel, Bernie spent only a short time in an institution (Cell Barnes). Instead she spent most of her life living with her family, and then later in a residential home, before finally moving into her own flat when she was 57. This was despite the fact that, when Bernie was born, there was very little support for people with learning disabilities who did not live in institutions.

Activity _unit3.3.1 Activity 5 Bernie's early life

Allow about 10 minutes

Watch Video 6 in which Phil, Bernie’s older brother, talks about his sister’s early life, then answer the questions that follow.

Download this video clip.Video player: Video 6 >

Video _unit3.3.1 Video 6

Transcript: Video 6

PHIL

Bernadette was born on the 3rd of September, 1950. That was in Watford. I was just over two at that stage, so my memories of that period are a bit scamp, but yeah, two year's difference between us.

I believe my mum went back to the maternity hospital for just a checkup with Bernadette. And she was told that Bernadette was Mongoloid because that was the reference then. And that was quite a shock. And there was no support at that time. So she was told just go home, but put Bernadette in a home, get on with your life, and think no more about it.

So she left the hospital in the total daze and wandered around the town not knowing what to do, nearly walked into the road. And by some miracle, her sister found her and took charge of her, took her home. But that was it. That was how she was told-- and the total lack of support at that time.

Her brothers and sisters were very supportive and were all through their lives of Bernie. And Bernie was just one of the family. Bernadette ended up in Cell Barnes for a period. Now Cell Barnes was a home for Down syndrome and others with learning difficulties. Mum had just had my brother, and I think it was trying to cope with that that they-- it wasn't quite like respite care. I think Bernadette went in to Cell Barnes. And she was there for about eight weeks.

We used to visit once a week, always seemed to be Sunday afternoon. It always seemed to be beautiful weather. The Cell Barnes had lovely grounds, like Parkland. And we used to walk, and have a picnic, or sit in the grass and play all together. And so that was that image, but that contrasted then with when we had to leave.

I have the image of Bernadette being held by a nurse, and just arms outstretched, wanted to come with us. And you see there 60-odd-years on, that's still quite a traumatic memory. I think we coped with that for about eight weeks. And Dad said no, can't deal with that. That's no life for Bernadette, it's no life for us. And so Bernadette came home. And then the next issue was to face the issue of education.

End transcript: Video 6

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Video _unit3.3.1 Video 6

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How did Bernie and Phil’s mum learn that her daughter had Downs Syndrome?

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Answer

She was told when her daughter had a check-up that she was ‘mongoloid’.

How did that affect her, according to Phil?

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Answer

She appears to have been shocked, so shocked that she almost walked into the road until her sister found her.

Why did Bernie end up in Cell Barnes?

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Answer

It’s not absolutely clear why Bernie went into Cell Barnes, but Phil, only a young child himself at the time, believed it was because another child had been born and his mother was struggling to manage.

Why was this a traumatic memory for Phil?

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Answer

Phil’s memory is of his little sister waving her arms to ask to go home with the family after visits. Even 60 years later, this memory brings tears to his eyes.

Bernie’s experiences were not unusual in the 1950s. Many families who had children with learning disabilities at this time were told that the best thing they could do was put the child in a home, forget about them and try for another child. There seemed to be no efforts to offer practical support or advice and families were just left alone to manage if they decided to care for their child in the family home. If they could not manage, then an institutional place was the only option.

Eventually things did get better, but only slowly. You will continue the story by building on the timeline from the late twentieth century to early twenty-first century.

4 The late twentieth and early twenty-first century - things getting better

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

As Bernie’s life story shows, things were still very difficult for people with learning disabilities and their families in the 1950s. But thinking and policy were slowly beginning to change. You learned about two things that contributed to this improvement in the previous timeline in Activity 1:

Judy Fryd started a parents’ campaigning group which later became Mencap (1946)
The NCCL criticised the practice of keeping people locked away (1950).

Other factors also began to make institutions seem like an old fashioned and inhumane form of care:

New ideas, like ‘normalisation’, began to circulate. Normalisation is the view that people with learning disabilities are entitled to a normal or ‘ordinary’ life, just like anyone else.
It became costly to staff and run hospitals to what the public considered to be an acceptable standard, particularly after the press began to expose the appalling conditions in some hospitals, like Ely, South Wales, in 1969.
Families working together in organisations like Mencap, Enable, Downs Syndrome Association and National Autistic Society campaigned for community services and for people with learning disabilities not to be discriminated against.
Research began to show that people with learning disabilities did better and learned more in homely environments than in large, overcrowded hospitals.

Gradually from the 1970s hospitals began to close (that was when Mabel Cooper left St Lawrence’s). Governments invested in community services, like day centres, where people could go to spend the day, and residential homes, where they could live as alternatives to hospitals or the family home.

In the next activity, you will continue this story and review the timeline from the mid-twentieth century to the present.

Activity _unit3.4.1 Activity 6 Learning disability through time

Allow about 15 minutes

Watch Video 7 and then answer the questions below.

Download this video clip.Video player: Video 7 >

Video _unit3.4.1 Video 7

Skip transcript: Video 7

Transcript: Video 7

NARRATOR

Although the Mental Health Act in 1959 required that more community care should be provided, the number of people in hospitals continued to rise with more hospitals being built to meet demand. But conditions in these hospitals continued to be poor, and in 1969, as Neil Armstrong was taking his giant leap for mankind, the Ely report exposed dreadful treatment of patients. Care was described as old fashioned and custodial.

Two years later, the first white paper concerned with the care of people with learning disabilities was published. It was called "Better Services for the Mentally Handicapped," and said that not enough progress had been made in developing community services and getting people out of hospital.

Margaret Thatcher was elected as Britain's first female prime minister in 1979, the same year that the Jay Report said the lives of people with learning disabilities should be normal and that they should be part of communities. This was based on an idea called normalisation that had been followed in Denmark since the late 1950s. Clearly, it took us a while to catch up.

Finally, the hospitals started to close, and people moved to residential care homes in the community as Bob Geldof and his friends encouraged us all to feed the world. In 1990, Nelson Mandela was freed after 27 years in prison. At the same time, the NHS and Community Care Act said that care should be provided by a range of services and individual care packages designed. For the first time, people with learning disabilities were also entitled to direct payments, meaning they could choose the services they wanted.

In 2001, when the world was falling apart elsewhere, "Valuing People" was published. It was the first white paper in learning disabilities for 30 years. It was based on four key principles-- rights, independence, choice, and inclusion. Meanwhile, 2006 saw EastEnders including a character with learning disabilities. Janet Mitchell was born, and she had Down syndrome.

"Valuing People Now" was brought out in 2009 to set new goals to support more people with learning disabilities to get homes and jobs and lead fulfilled lives. In the same year, the last hospital closed, and Barack Obama became the first black president of the United States of America.

The Equality Act came into force in 2010, providing a law to tackle all forms of discrimination. Despite this, in 2011, a panorama investigation exposed the abuse of residents at Winterbourne View Hospital in South Gloucester. It showed the cruel treatment of vulnerable adults and resulted in six members of staff going to prison and five more receiving suspended sentences. It was a shocking documentary and revealed how care can go horribly wrong.

WOMAN

So this history has shown that many good things have happened to help change attitudes and improve the lives of people with disabilities. But this isn't over. There is still work to be done.

End transcript: Video 7

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Video _unit3.4.1 Video 7

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In which year was the Ely Report, which exposed the poor conditions of people with learning disabilities living in long-stay hospitals, published?

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The Jay Report, published in 1979, said people with learning disabilities should be able to enjoy ‘normal’ lives, true or false?

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Which soap opera introduced a character with learning disabilities in 2006?

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The Panorama programme in 2011 revealed details of the abuse people had experienced in a private hospital, true or false?

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Bernie’s experiences mirror these social shifts. After leaving Cell Barnes in the 1950s, she initially moved back in with her family and then progressed to living in her own flat, which, at the time of writing (2019), is with support from staff who have known her for 15 years.

4.1 A changing policy landscape

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Until 1971, people like Bernie were labelled ‘ineducable’. There was no school place for her.

Watch this video in which Bernie’s brother, Phil, explains.

Download this video clip.Video player: Video 8 >

Video _unit3.4.2 Video 8

Transcript: Video 8

PHIL

So Bernadette got to school age, and there was nothing. And I remember my father fighting long and hard to get something for her and constantly getting rebuffed to the extent that when it came round to rates time, he went up to the town hall, and he put the money on the desk and said that's my rates, and I've deducted the education bit because you won't educate my daughter.

Eventually, Bernadette got into a training centre. And that was what was accepted then. Bernadette loved that. But it wasn't really preparing her for later life. It was keeping her occupied.

End transcript: Video 8

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Bernie’s life began to change in response to the 1971 White Paper, which said more community services were needed for those with learning disabilities. She first of all got a place at a training centre, which provided day time activities and non-paid work, and then moved into a residential home when her parents reached their seventies and decided they needed to find Bernie a home of her own. Both were set up in response to the Government’s paper.

However, it was after the Government’s White Paper, Valuing People, in 2001 that Bernie’s life really changed for the better.

Activity _unit3.4.2 Activity 7 Bernie's story

Allow about 10 minutes

Watch Phil talking about how Bernie’s life changed after Tony Blair’s Labour Government introduced ‘supported living’ following the 2001 Valuing People White Paper. As you watch, note down what it is about supported living that has made such an improvement to Bernie’s life.

Download this video clip.Video player: Video 9 >

Video _unit3.4.3 Video 9

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Transcript: Video 9

PHIL

Tony Blair can be a rather toxic name to mention, I know, in some ways. But as far as I'm concerned, he was brilliant because he and his government decided that the residential homes should be phased out and supported living used to replace it.

Now, that was ideal for Bernadette. So Bernadette has now been in her flat, a self-contained flat, with supported living for 11 years. She has, I think, about 26 hours a week of support.

She still does her activities-- going to age concern. She goes to a country pass club once a week as well, she still does Mencap, she goes swimming once a week. Whenever I run through what Bernadette's schedule is, I'm always amazed as it's far more involved and detailed than mine. Never seen her as happy as she has been for these past couple of years.

End transcript: Video 9

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Answer

The main improvements Bernie has noticed in her life since the Valuing People White Paper include:

She has her own self-contained flat.
She has 26 hours of support per week from staff who have known her a long time.
She has a full programme of activities.

Things have certainly come a long way since the only resource available to Bernie was Cell Barnes hospital.

5 The present

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

There have undoubtedly been significant changes for the better in the lives of people with learning disabilities since the large institutions closed. Bernie is not alone in enjoying a far better quality of life. However, the fight to secure the gains made since 1950 is not over. One of the big debates is around inclusion versus specialist provision.

Valuing People made ‘inclusion’ one of its four principles. This has subsequently been interpreted by governments as meaning that specialist provision, such as the day centre Bernie attended for so long, might be closed in favour of encouraging learning-disabled people to join in the leisure activities other people enjoy. This can be all well and good in theory, but sometimes this can raise practical problems, like affordability, discrimination, access and transport.

Clare, Elinor’s mother, discusses the problems that are still faced in the present day:

One of the problems, despite the substantial and welcome changes in attitude that Valuing People helped happen, has been a tendency to throw the baby out with the bathwater, so to speak. And for me it speaks to the near impossible task of speaking about different levels of learning disability at the same time. There are day centres that offer opportunities for friendship and meaningful lives – my daughter goes to one 2 days a week – particularly for people with more severe learning disabilities.
The closure of many day centres did not lead to better quality of life for many people rather the reverse, as actually it has been difficult to find ways of providing ‘community activities’. In fact it can increase social isolation.
Employment is not an option for people like Elinor. Family carers have relied on the regular hours of day centres to enable them to go out to work. If people are living with their families, the needs of everyone should be taken into account [Care Act 2014] and it’s asking a lot of families to manage all their relative’s support from home. As family carers say sometimes (though I didn’t feel this) they don’t want their home to become a work place, or manage staff.

The key issue here is choice: not getting rid of day centres or village communities but offering many alternatives so people can choose. These alternatives should offer something to the immense range of different and diverse people that make up ‘people with learning disabilities’.

You will encounter similar debates throughout the course, particularly in Session 8.

6 This session's quiz

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Well done – you have reached the end of Session 2. You can now check what you’ve learned this session by taking the end-of-session quiz.

Session 2 quiz

Open the quiz in a new tab or window by holding down Ctrl (or Cmd on a Mac) when you click on the link. Return here when you have finished.

7 Summary of Session 2

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

In this session you have been considering how ideas about learning disabilities have changed over time: from the 18th century, when people who would now be considered hard to employ could perform useful jobs, to the dark era when people with learning disabilities were regarded as a danger to the health of the nation, and the extremes of Nazism.

Changes made since the Second World War have meant that it is possible for many people with learning disabilities to live longer and have enjoyable lives. However, the past casts a long shadow, and is one of the reasons that the question of equal rights is a sensitive one. Not so long ago, many people with learning disabilities were deprived of the right to freedom, and for some it is still under threat.

In this session you explored:

the different ways learning disabilities have been viewed since the 18th century
life for people with learning disabilities who lived in institutions in the 20th century
life for people with learning disabilities who lived in the community in the 20th century
how learning disability policy has changed over time.

You can now go to Session 3, which focuses on the experiences of families, and what it’s like to support someone with a learning disability from the point of view of being a parent or a sibling.

Want to know more?

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

On the history of the last 50 years, see Jan Walmsley’s The Road to Citizenship in the Inclusive Archive. There is also an easy read version: https://inclusivearchive.org/ story/ 6/ the-road-to-citizenship-by-jan-walmsley/
The Open University History of Learning Disability Education Resources, particularly No Longer Shut Up (full version), Activities 3, 4 and 12, and Jan Walmsley’s Institutionalisation: An Historical Perspective: http://www.open.ac.uk/ health-and-social-care/ research/ shld/ education-resources
For differences across 12 countries:
Walmsley, J. and Jarrett, S. (eds) (2019) Transnational Perspectives on intellectual Disabilities in the twentieth century: People, Policy, Practice Bristol: Policy Press.
For family stories:
Rolph S et al (eds) (2005) Witnesses to Change: Families, Learning Difficulties and History Kidderminster: BILD.
For patients’ memories of institutions:
Keilty T and Woodley K (2013) No Going Back https://www.centreforwelfarereform.org/library/by-date/no-going-back.html
For staff reminiscences of working in institutions:
Jan Walmsley and The Finding Out Group A Modern Hospital https://www.centreforwelfarereform.org/library/by-az/a-modern-hospital.html
More detailed timeline: http://www.open.ac.uk/ health-and-social-care/ research/ shld/ timeline

Introduction

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

This week you will be thinking about the families of people with learning disabilities.

Download this video clip.Video player: Video 1 >

Video 1

Transcript: Video 1

CHARLENE

I sometimes get on with my family, sometimes I don't.

CIAN

The problem is I spend too much time with my family, like, nearly anyone that’s got a learning disability.

SHAUN

My mum was very overprotective so I wasn't allowed out.

CHARLENE

Because I've got a learning disability, they treat me, like, different. You know? They don't treat me like an adult.

TERRY

I live with my mum, and she's pretty chilled out.

DAYO

Whenever I go out they always call, like, just to make sure that I'm all right. And that's a very good, positive thing.

End transcript: Video 1

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Families have always been the mainstay of care for people with learning disabilities. In 2015, over 44,000 of the people identified as having a learning disability in England were living with families – 36% of the total. In Wales, the figure was 53% (2018), in Scotland somewhat lower, at 30%.

Whether people stay in the family home, leave it to live independently, or are supported by paid staff, families play an exceptionally important role in the lives of many people with learning disabilities.

In this session you will explore:

how family carers and paid support workers can work together
why people with learning disabilities and their families may feel excluded from mainstream society
the family dynamics when an adult with a learning disability continues to live with parents well into adulthood.

1 Family experiences

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

In Session 1 you heard from people with learning disabilities. You will now hear from some people whose close relatives have a learning disability.

Activity _unit4.1.1 Activity 1 Hearing from families

Allow about 15 minutes

For this activity you will be watching two family members talking about their relatives with a learning disability. They share their hopes and fears. As you watch, note down the main issues they mention. You might like to highlight certain words or phrases that recur and any underlying ideas that you notice.

Download this video clip.Video player: Video 2 >

Video _unit4.1.1 Video 2

Transcript: Video 2

JO ROACH

For my daughter. And you, Susie, what should I leave you? Not the pewter statue of the boy, his right hand missing. Let him stay on the mantlepiece for the second-hand dealers. Not photos of my mother, who died before you were born into that grieving time, not money to be banked for you by someone else, not my poems. You'll never read them. But the very fiercest of watchdogs who wouldn't sleep for 100 years.

I'm Jo Roach. And I have a daughter, Susie, who has a learning disability. My daughter is now-- she's going to be 39 very soon. Looking back over the years, it's been a hard, hard journey. My level of anxiety is often so high. It's because of the person with learning disabilities' vulnerability. The child part of them is so present in your mind. Even though they're 39, they're still-- to you, they're that child with all that vulnerability.

Is Susie OK? That's always present in my mind. And I think about situations where-- can I take Susie with me to that place? How will she fit in? How will we fit in? So there's-- I think there's a lot of isolation.

OWEN

Well, I was a teacher for many years. And during that time, Dora lived with my parents. My father, I seem to remember over the years, was really very concerned, sometimes even obsessed about what Dora's future was going to be. As years went by, my father died.

Dora continued to live with my mother. She started getting elderly, and she really couldn't look after herself and Dora. So the two of them moved in with me. I then took early retirement from my teaching. Then my mother died, and so Dora just continued to live with me.

She's quite a placid, calm, likable sort of person who gets on well with people and is a pleasure to live with. I think myself quite fortunate. Dora goes to a day centre called Daylight. And she goes there five days a week. And she loves it down there. All her friends are down there. She has a terrific time down there.

I've been looking in to the possibility of Dora moving into her own independent supported accommodation for some time. Since my health has taken a bit of a turn, I've asked if this could be-- the whole process could be accelerated a little bit. I don't think it's unkind to say this. A lot of carers hope that the person that they're caring with will die before them because that solves one problem.

It looks as though she's going to outlive the lot of us now, though, the way things are going to be honest. I recall all the comments that my parents used to say. Make sure Dora is OK. Dora must be looked after. All these thoughts come back to me. And it does get a bit scary when you actually have to take the leap.

The carer doesn't believe that anybody else that can care for that person as well as they can. That was certainly the view of my parents. And when I was younger, I used to think how silly they were. But now I'm in exactly the same position that my parents were in. I can see exactly what they meant.

End transcript: Video 2

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Answer

Here are some of things that the family members mentioned:

What will happen when I’m gone?
Fear/ anxiety
Love and devotion
Grief
Desire to protect
Worry
Isolation
A lovely person to be with
Intense emotion.

The emotions for those who have a relative with a learning disability are mixed. Phil, whose sister Bernie you met in Session 2, has spent his life looking out for Bernie but has loved having her as his sister: as it has had a positive impact on his life and given him a greater understanding of others. While many relatives would agree with this, they would at the same time worry about what the future holds, particularly when they are no longer there to care for them. You will look at this in more detail next.

Box _unit4.1.1 Box 1 What will happen when I’m gone?

Looking ahead to a time when parents or relatives are not there to keep that watchful eye has always been stressful for families. In Video 2, both Jo and Owen talked about their fears for a time when they are not there to protect their relative. The title of a book published in 1981, After I’m Gone what will happen to my handicapped child? (Sanctuary, 1981) sums up one of the major fears of families to this day.

In Video 2, you heard Jo talking in her poem about the ‘fiercest watchdog/who would not sleep for a hundred years’, and Owen saying that many families wish their son or daughter would die first. This reflects some of the struggles families have in trusting other people to take care of their daughter or son, brother or sister.

Next you will consider the sense of exclusion family members feel in society.

2 Disabled by association

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

In Session 1, Cian, Charlene and Terry talked about a sense of exclusion they felt from society.

Do families share this sense of not really belonging that people with learning disabilities talked about?

Activity _unit4.2.1 Activity 2 Disabled by association

Allow about 10 minutes

Watch the video below. You may remember some of this content from Session 1. What do you understand the term ‘disabled by association’ to mean?

Download this video clip.Video player: Video 3 >

Video _unit4.2.1 Video 3

Transcript: Video 3

MARGARET

I came from the Caribbean. I was born in the Caribbean. I came here very young. And I had Marvin. When he was born, everything seemed OK.

And later on, he wasn't reaching the milestone which I thought he would've done. And I approached the health visitor and they said, no problem, some kids are slower than others. And they started doing more investigation, like speech therapy and stuff like that. At that time, he was about four years old, coming up to four. So all this time, I've been shunted from pillar to post, not knowing what's wrong with him.

And eventually, we went to Great Ormond Street. One of these doctors said that he was autistic. It was a real struggle. It was very stressful for myself. At that time, his dad, frustrated with his problem-- having a child like that-- is gone. So I'm a single parent then. We all have this problem. The partners always-- the other way.

My son is 35. And at 35 he'd probably be a married person by now. But because he is disabled, he is still like a child. He couldn't handle anything. Any correspondence, money, he can handle that. So he's totally dependent on someone. Now, I was that person who did everything for him.

And he's gone somewhere else. And someone else, you're not sure the other person is doing the same thing. It's like a job for them. So they do what they can and they're off home. For the rest of his life, when I'm gone, he'll still have to have someone to be dependent on.

NIROO

Bhavin is 26 years old. He's been living at home until last December. He has autism, epilepsy, and behaviour that challenges.

JIGNESH

One of first memories I have of Bhavin, I remember seeing him as a baby and thinking, I'm looking forward to seeing him grow up and to develop into the person that I am. Unfortunately, I wasn't going to discover how he was going to learn to speak and how to understand other people and the natural development the average individual takes.

NIROO

We're disabled by association. Because wherever you go, they look at you. We felt we were not part of the community.

JIGNESH

There's many things I would see a lot of my friends and their families doing, which actually we as family could never do. Very rarely did we ever go away as a family together.

NIROO

Sometimes he can be very aggressive. He can be very aggressive. He's agitated. And he has obsessions with papers, flowers, his collection of key rings. And if he can't get it, if we don't allow him, then Mommy gets a kick. It backfires.

He's never far from the mind. Every waking moment we think of Bhavin. What would he be doing now, quarter to 7, if he was at home and having his supper? He's always there on my mind. He's always there.

He's going to be moving into his own one-bedroom flat. My hopes for him is that he'll be stretched to gain more independence and be his own person. Do what he likes and do what he enjoys without Mum restricting him.

JIGNESH

He will be learning those life skills. And that will hopefully help him to live a bit more independently, which is our long-term hopes. What matters to us is that someone like Bhavin isn't just part of some long, elaborate babysitting service that's government-funded but actually he's treated as a human being and as a person, and what he likes and who he is is respected and understood by those people that are looking after him.

End transcript: Video 3

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Answer

The reason parents and siblings can feel excluded is because of a fear about what other people think about their disabled relative, and also how others will react.

According to Bhavin’s mum, Niroo, they are ‘disabled by association because wherever you go they look at you, you know’.

According to Jignesh, Bhavin’s brother: ‘There were many things I would see a lot of my friends and their families doing which actually we as a family could never do. Very rarely could we go away as a family together.’

2.1 Living different lives

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

The Equality Act 2010 made it unlawful to discriminate against disabled people and their carers. However, the law alone cannot solve the problem of stigma and discrimination.

Figure _unit4.2.1 Figure 1 People with more severe learning disabilities are often very reliant upon their families

Skip transcript: Slideshow 1 Activities undertaken by parents to create change

The reality for many parents and other family carers where people have severe learning disabilities is that, as the child grows up, the distance between them and their peers grows. Their children often do not:

leave home to get a job, go to University or travel
set up their own household
set up home with a partner.

If their son or daughter continues to live at home, carers, usually mothers, may give up work due to the difficulties of finding reliable respite care, or the need to meet their medical needs. This can lead to financial difficulty, poverty and isolation.

Some family carers report health problems due to stress and, in some cases, the sheer hard physical work of moving and providing personal care for their relative.

Parents and sometimes siblings can also find that their main social role is as a carer, which then sets them apart from their peers and contemporaries too.

3 Change and no change for families

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

In practice, families, mothers in particular, have always been the main providers of care for people with learning disabilities. In the late 1960s, roughly half of adults with learning disabilities lived with their families (Walmsley, 2006). Recent estimates suggest the current figure is 36% in England (Public Health England, 2016), but in Wales approximately half of people with learning disabilities continue to live in the family home.

It is not a surprise that this is the case. Very often people with learning disabilities do not get enough support through social services, and families frequently step in to fill the gap. But how does this feel?

Activity _unit4.3.1 Activity 3 Change and no change

Allow about 10 minutes

Read Sue Wilson’s account of her life with her children, James and Jennie.

Note down what Sue says about the help received from social services.

Extract _unit4.3.1 Family life

After he [James] was born, I knew that my marriage was very unhappy, but I knew that I could not face life as a single parent with one disabled child, so I made a conscious decision to have another child. I felt it was important for James to have at least one brother or sister, to have some sort of normal life. When I was a single parent with them, I think it was easier having two children than one.

When James and Jennie were small, it was very difficult to cope. I had a twin buggy that I used to have given to me regularly by social services. It would only last a few months and James would break it and they’d send me another one. He must have been in a pushchair until he was well over five or six. So Jennie was walking and running long before he was, and she’s two years younger. She was out of nappies before him and talking. But she still had to get strapped in the twin buggy next to James because I couldn’t cope with them.

I think it’s been quite hard for Jennie. I think she’s suffered quite a bit of neglect: her needs have had to come second to James’s a lot of the time. It’s been hard for my younger son [Joel] as well, particularly when Joel has had to look after James, helping me to bring him up. He has been able to do that for him for a long time. I think James finds that hard.

We had no help from social services. I tried to get help but he was so violent, he really used to punch Jennie hard for no reason, his aggression was directed at Jennie. He grew from five foot two to six foot two in twelve months, so he had all that testosterone flowing round his bloodstream, he didn’t know what to do with his anger. At that point, that was when I felt I couldn’t cope any longer. Jennie was subjected to tremendous amounts of violence, and I tried to get respite care. We tried to get some sort of placement for him; we tried everything, and we got nothing.

(Rolph et al., 2005)

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Answer

Sue got some practical support when James was young (in the form of a twin buggy provided by Social Services). But at the point when the family really needed help – when James became quite violent during adolescence – they received no support at all.

Sue is not alone in feeling abandoned by social services. Jan Walmsley, one of the course authors, quotes many similar instances in a chapter on families’ experience of social work (2019).

It is understandable that social workers prioritise people in immediate need, not those who appear to be happily managing in the family home. However, the results can be traumatic, particularly when parents die after a lifetime of caring.

I met Sam (not his real name) in the course of research into supported living in a London borough. He was in his early 60s. He seemed sad. He tore at his shirt when with me. Staff explained that he had come into the house after his mum had been taken ill two years earlier. While she was still alive his sister would come to take him to visit his mum at weekends. He still packed his case on a Friday, and waited at the door. But his sister never came. The staff did not know whether he understood that mum was dead. They did not know where mum was buried. He had not been to the funeral because his sister thought it would upset him. His sister had not been in contact since their mother had died. They did not know how to contact her.
(Walmsley, 2019)

This story is not unique. It is hard for most people when parents die. How much more so, if you have spent your whole life with them until late middle age. This is compounded by a reluctance to talk about death in case it is upsetting for the person.

4 Family advocacy and family carers

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Families have not taken neglect lying down. Banding together in organisations like Mencap and Enable (Scotland), families have fought hard to get their roles and needs recognised. Play the slideshow below to see some of the actions families in the 1950s and 1960s took.

Download this video clip.Video player: Slideshow 1 >

Video _unit4.4.1 Slideshow 1 Activities undertaken by parents to create change

Transcript: Slideshow 1 Activities undertaken by parents to create change

Families fought to change things in the 1950s and 1960s

They organised seaside holidays

They set up services like residential homes and nurseries

They raised money through organising events like pram races

They offered one another mutual support

They provided a social life for their sons and daughters

Gradually from the late 1960s local authorities took over running their local services

By the 1990s all local authorities provided some residential places for adults.

End transcript: Slideshow 1 Activities undertaken by parents to create change

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The achievements of families fighting for a better life have been enormous. As a result of their efforts, improvements in community services gradually built up in the late 20th century. For example, day centres have offered somewhere to go in the daytime, giving families time free of caring responsibilities, and providing an alternative to employment. Alternatives to living at home or in a hospital, such as hostels, group homes, supported living, and even home ownership or tenancies have also increased.

Meanwhile, financial benefits including Disability Living Allowance and, later, Personal Independence Payment were introduced, while income support had additional disability premiums.

The role of families was slowly recognised by policy makers, particularly as hospitals began to close and ‘care in the community’ became the policy from the 1980s. Governments belatedly recognised family carers as an important resource who saved them money. The word ‘carer’ came into use to mean someone, usually a family member, who supported someone without pay.

The National Strategy for Carers, England (1999), the Strategy for Carers in Scotland (1999) and the National Carers Strategy, Wales (2000) paved the way for:

carers to have their own needs assessed
support and involvement in decisions
respite services to let carers take a break
payment if caring for at least 35 hours a week.

Box _unit4.4.1 Box 2 What is a carer?

A carer is defined by NHS England as:

anyone, including children and adults, who looks after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support. The care they give is unpaid.
(NHS England, no date)

Under the Care Act 2014 (England), carers are entitled to an assessment where they appear to have needs. This matches the rights to an assessment of the person being cared for. Similar provisions apply across the UK, under the Carers Scotland Act 2016, the Social Services and Well-being Act (Wales) 2014, and the Carers and Direct Payments Act (Northern Ireland) 2002. Carers will be entitled to support if they meet these criteria:

the carer's need for support arises because they are providing necessary care to an adult
as a result of their caring responsibilities, the carer's physical or mental health is either deteriorating or is at risk of doing so, or the carer is unable to achieve any of the outcomes as specified in the regulations and as summarised in the section
as a consequence of being unable to achieve these outcomes, there is, or there is likely to be, a significant impact on the carer’s wellbeing.

(Social care institute for excellence, 2014)

Carers can claim money, if caring for more than 35 hours a week. In 2019, this was £64.60 per week in England, more in Scotland. However, receiving this less than generous benefit can affect other benefits – for example, severe disability premium can be stopped.

4.1 An ongoing responsibility

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

So far the discussion in this session has largely been about people who continue to live with their family, usually parents, well into adulthood. However, this is not everyone. Some young people with learning disabilities do leave home, some to live semi-independently, perhaps with support from paid staff. Despite this, families report that they continue to feel a sense of responsibility.

Figure _unit4.4.1 Figure 2 Care staff may find themselves supporting people to make decisions about what to eat

For example, Leah is 30 years old. She has a moderate learning disability. She lives in her own flat with paid support workers visiting and her parents also live nearby. She receives Direct Payments, meaning she is in charge of her own budget, and employs her own support. Despite this sense of independence, Sheila, Leah’s mum, explains that she is still responsible for making sure everything runs smoothly – and fighting for Leah’s rights:

My daughter’s support has been in the process of being reviewed for a year now. This involves a stop/start series of meetings with care managers and seniors. The bottom line is a cut in her hours but with no clear justification or assessment. An assessment was undertaken in the spring and it was called an ‘outcomes focussed assessment’. The only outcome, however, was a reduction in support they will pay for from 35 hours per week (too much as everyone agrees) to 7 hours per week. The only reason given was that she is ‘independent’.
We robustly challenged this ‘assessment’ and it ended up (eventually) with a senior council officer declaring it inadequate and the whole sorry process started again. Only yesterday we had an email from yet another care manager saying that Leah’s support would be reduced to ‘take account of her outcomes’ (as yet not known or documented).

(Walmsley et al., 2017)

Sheila’s experiences are a reminder that parents sometimes feel that the battle to get the best for their sons and daughters is never ending, despite the aspiration that they can live independently.

For many people with learning disabilities, their families are their best advocates. However, some might argue that parents need to learn to ‘let go’, and accept that theirs is not the only way to offer support. It is this dilemma that you will explore next.

5 Choice and conflict

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

So far in this course, you have seen some of the strains that families experience when relatives have a learning disability. Here you will explore what happens when you bring paid supporters into the picture.

Figure _unit4.5.1 Figure 3 People with learning disabilities are often supported by both family members and paid care staff

Figure 3 places the person with a learning disability at the top. His or her well-being relies on the family and support worker working in harmony.

This can be quite a difficult set of relationships. The mothers, fathers, sisters and brothers of people with learning disabilities (family carers) bring with them their own history of experiences, some good, some difficult and painful. When relatives reach adulthood, they have to deal with a whole new set of services, social workers and support staff. When these go well, they can be greatly valued by the family and help to improve the lives of the service user. When they go badly, and tensions and conflicts develop, everyone suffers.

Difficulties can arise when families see their disabled relative as having a younger developmental age, whereas staff wish to acknowledge them as autonomous adults. Owen, who you met in Section 1, acknowledged that his views changed when he became responsible for his sister Dora.

I recall all the comments that my parents used to say: Make sure Dora is okay; Dora must be looked after. All these thoughts come back to me and it does get a bit scary when you've eventually got to take the leap. The carer doesn't believe that anybody else can care for that person as well as they can. That was certainly the view of my parents and when I was younger I used to think how silly they were. But now that I'm in exactly the same position as my parents were in, I can see exactly what they meant.

(extract from Learn with Us)

A good three-way relationship between the person with a learning disability, their family and the support staff who look after them is important, but not always easy to achieve. The next activity illustrates some of the tensions.

Activity _unit4.5.1 Activity 4 What should Dora wear?

Allow about 10 minutes

Watch Video 4 in which you hear Owen talk about the clothes that Dora wears. Owen thinks that staff should encourage Dora to wear clothes that don’t make her look like ‘a clown’. As you watch note down the case for and against Owen’s view.

Download this video clip.Video player: Video 4 >

Video _unit4.5.1 Video 4

Transcript: Video 4

OWEN

There are some carers, who will say, well, Dora said she wanted to wear that yellow thing with that bright blue dotted thing. And she can end up looking like Koko the Clown, looking quite silly. A disabled person has freedom of choice. My sister has freedom of choice. However, I feel there are some times she requires a little bit of help making that choice. She is disabled and she needs help making choices sometimes.

End transcript: Video 4

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Video _unit4.5.1 Video 4

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Answer

For

People are less likely to notice Dora.
People are less likely to poke fun at Dora.

Against

Dora is an adult and should be able to make up her own mind about her clothes.
Who, other than Dora, is to say what is and is not acceptable? Ian, a self-advocate with learning disabilities who reviewed this course, commented: ‘No one should tell someone else what to wear. What’s wrong with her clothes?’

It is a simple thing to say people have a right to choose what to wear. But the devil is, as so often, in the detail. What does ‘choice’ mean? Where it is assumed, rightly or wrongly, that a person with a learning disability does not have the ability to make sensible decisions, then the scene is set for conflict between the people who believe they know what is best for that person.

5.1 Families, culture and support

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Deciding who knows best is a very tricky area for families, staff and people with learning disabilities. It becomes, if anything, more complicated when you add different cultures into the mix.

Figure _unit4.5.2 Figure 4 People with learning disabilities may be supported by care staff from different cultures

Remember Bhavin? He appeared in videos in Session 1 and earlier in this session. One concern Bhavin’s brother, Jignesh, has is that the young woman working with Bhavin as his key worker wears revealing clothes, which is not commensurate with his cultural values. Bhavin, a young man, is likely to get excited being in close proximity to a young woman, but Jignesh has felt like he can’t tell the worker what to wear.

As you can appreciate this is a complicated scenario and, when asked, people had strong and differing views on it. One person commented: ‘you should always dress professionally, and that means taking account of what the client and his family think is right’. However, another, equally vehement, said ‘Bhavin needs to learn to relate to all kinds of people. It does him no favours to try to manage his environment to that extent.’

Where do you stand? Although getting all parties to agree can be hard, when you get the communication right, the relationship can be really positive for the person with a learning disability.

5.2 Getting the communication right

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

The next activity asks you to consider good communication between families and support workers, when the person has profound and multiple or severe learning disabilities.

Activity _unit4.5.2 Activity 5 Ask the family

Allow about 15 minutes

Watch this video of people with profound or severe learning disabilities taking part in performing arts.

Download this video clip.Video player: Video 5 >

Video _unit4.5.2 Video 5

Transcript: Video 5

WILLIAM

Hello. I'm William. And this is Ahmed. We come here every Friday.

WOMAN

What I enjoy about this, it makes me, even if I'm not feeling happy, the minute that I come here, my sadness is taken away. It's full of joy.

CIARA BRENNAN

It's a session that uses the performing arts through music and movements and dramatic exploration to allow participants to be able to communicate and connect with each other and with their carers.

JESSIE PERCIVAL

We spend a lot of time working with them, kind of understanding how they move, what they can do, what they enjoy, how they want to relate to each other in the space.

CHARLENE LOW

It's a very personal experience, very openly social as well. You get to know who likes what, and you tailor something so magically, it's personal to just that one person.

[DRUMMING]

[CHANTING]

CHARLENE LOW

Fantastic. So really try to point that foot [INAUDIBLE]. Give it a little wiggle round your ankle.

End transcript: Video 5

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Video _unit4.5.2 Video 5

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Now imagine you are one of the drama workers.

Write down four questions you would ask a family carer about the person you are working with.

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Answer

Questions you could have asked include:

What does s/he enjoy doing?
What does s/he like to eat and drink?
Does s/he have any particular medical problems?
Is there anyone in the group s/he particularly likes to be with?
Does s/he have any special talents to build on?

Write down two ways to share with families what their relative has been doing in the drama class.

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Answer

Methods for sharing their experience with their family might include:

A written diary, maybe one where the family member can respond.
Using an iPad or mobile phone to take photos and share them using social media, email or text. This could also invite response from the carer.

Maintaining positive communication between families and support staff can be time consuming for everyone, but getting it right can have huge benefits.

5.3 Living with my family

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

This final section of this session looks at the perspective of young people with learning disabilities living with their families. The statistics quoted in the introduction to this session showed that it is far more common for people with learning disabilities to remain with their families into adulthood than it is for non-disabled people – though this may be changing for millennials.

In the next activity you will hear Charlene, Cian, Terry, Dayo and Shaun, who you first met in Session 1, talking about living with their families.

Activity _unit4.5.3 Activity 6 Living with my family

Allow about 15 minutes.

First watch and listen to Charlene, Cian, Terry, Shaun and Dayo talk about living with their family. Then, using cut and paste, put the ideas they mention (shown in the box below) into Table 1 using the headings given.

Download this video clip.Video player: Video 6 >

Video _unit4.5.3 Video 6

Transcript: Video 6

CHARLENE

I sometimes get on with my family. Sometimes, I don't because it's like-- so especially my mum and my sister, because I've got a learning disability, they treat me, like, different, you know. They don't treat me like an adult, like, half the time.

CIAN

My relationship with my family is kind of-- it's reasonably good, but it could be better. The problem is I spend too much time with my family, like any-- like nearly anyone that's got a learning disability. Because I didn't get the chance to, like, go off to university somewhere else-- I was stuck at home, at a poxy college-- I basically have lived with my mum and my brother all my life. And it can be incredibly hard, although I love my family to bits. I'd love to be able to live independently, but there's no-- there isn't really much option for me to just live independently.

TERRY

Well, what-- I live with my mum. And she's pretty chilled out. She is getting on a bit so she needs my help more than-- well, I need her help. [INAUDIBLE]

DAYO

I live with my mum. Yeah, I'm always very close. Yeah, I'm always very close to my family. Yeah, my family do give me the independence. You know, whenever I go out, just to make sure-- they always call, like, just to make sure that I'm all right. And that's a, you know, very good, positive thing.

SHAUN

My mum was very overprotective. So I wasn't allowed out pretty much. I was pretty much seen as someone almost trying to hide from society. And that happened until I was 16, 17, went to college-- still was coming home, still not doing anything much. And then my mum left in 2012-- my mum, my dad, broke up.

And it completely went reverse-- so it reversed because my dad was very much more like myself. He knew about what he'd get out and do what-- was right you know, and do what was needed to do. I was having to deal with quite a lot, but I'm dealing with a lot more better services. And now, my dad and me get on very well, so I'm pretty happy with how things have become.

CHARLENE

My nan I love so much. She always supports me, in everything you know, she’s the one that taught me everything, [LAUGHS] even-- Even about the birds and the bees, she taught me that.

End transcript: Video 6

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Video _unit4.5.3 Video 6

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Table _unit4.5.1

I love my family to bits	My mum was over protective
I spend too much time with my family	I didn’t get the chance to go off to university
I’m always very close to my family	Whenever I go out they always call up to make sure I’m OK
My mum needs my help more than I need her help	They don’t treat me like an adult
There isn’t much option for me to live independently	My mum is pretty chilled out
My mum was trying to hide me from society	My gran taught me about the birds and the bees
My mum and my dad broke up, it completely went in reverse

Table _unit4.5.2 Table 1 Views on living with family

I like living with my family	I don’t like living with my family	Things changed when …
Table 1 Views on living with family 1	Table 1 Views on living with family 2	Table 1 Views on living with family 3

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Answer

Table _unit4.5.3 Table 1 Views on living with family (completed)

I like living with my family	I don’t like living with my family	Things changed when
I love my family to bits	My mum was over protective	My mum needs my help more than I need her help
I’m always very close to my family	We spend too much time together	Mum and dad broke up, it went completely into reverse
My mum is pretty chilled out	I didn’t get the chance to go off to university
Whenever I go out they call up to make sure I am OK	My mum was trying to hide me from society
My gran taught me about the birds and the bees	They don’t treat me like an adult
	There isn’t much option for me to live independently

These responses are as mixed as you might expect, and easily as mixed as the family perspective.

Did you notice how family relationships change over time? Terry in particular spoke about this, as now that his mum is getting on she is in need of Terry’s help as well. The relationship is becoming more reciprocal, and better as a result.

6 This session's quiz

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Well done – you have reached the end of Session 3. You can now check what you’ve learned this session by taking the end-of-session quiz.

Session 3 quiz

Open the quiz in a new tab or window by holding down Ctrl (or Cmd on a Mac) when you click on the link. Return here when you have finished.

7 Summary of Session 3

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

In this session you have been considering learning disability from the perspective of families, who are often the primary carers even when they live elsewhere. You have learned that families experience very mixed emotions. They may feel oppressed and burdened, concerned about their relative, fearful about the future when they may no longer be around to keep a watchful eye, and yet recognise many benefits from living with and caring for a learning disabled relative.

There can easily be differences of opinion on what’s best for the relative, particularly when their disability is more severe. Hence conflict and misunderstandings between family and paid carers over who knows best can occur. However, when families and support workers work in harmony things can work well.

Finally, you heard from young adults with learning disabilities about how they feel living with their families, and how things can change over time.

In this session you explored:

how family carers and paid support workers can work together
why people with learning disabilities and their families may feel excluded from mainstream society
the family dynamics when an adult with a learning disability continues to live with parents well into adulthood.

You can now go to Session 4, which explores education for people with learning disabilities and their experiences of school.

Want to know more?

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

A comprehensive overview of families (including easy read versions by Jan Walmsley) can be found on the Inclusive Archive of Learning Disability History website, Sections 2 and 5: https://inclusivearchive.org/ about-the-history
Carers UK website: https://www.carersuk.org/ home
Rolph S., et al. (eds) Witnesses to Change: Families, Learning Difficulties and History Kidderminster: BILD.

Introduction

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Download this video clip.Video player: Video 1 >

Video 1

Transcript: Video 1

TERRY

Primary school was good. I was the only disabled people at the school. And they were very good with me.

SHAUN

I was being bullied pretty much every day of the week.

CIAN

Although I made some friends there, I still felt like there was a horrible, nasty environment.

DAYO

I had some positive times when I was in school, when I was in college.

End transcript: Video 1

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Link: Deciding how to use the country’s education budget

Video 1

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Education for everyone – including people with learning disabilities – is a fundamental human right. In the UK, like many other countries around the world – the right to an education is enshrined in law. But people with learning disabilities have not always had this right. And many families would argue that they are still fighting for a quality education for their children.

Today, children with learning disabilities are educated either in inclusive schools (sometimes described as ‘mainstream’ schools) or special schools. Inclusive schools provide education to pupils of all needs and abilities. Special schools provide education only to pupils with special educational needs and disabilities. As you will learn in this session, some people believe passionately in promoting inclusive education, whereas other people feel strongly that there continues to be a need for special schools.

In this session you will explore:

the history of education for people with learning disabilities
the benefits and challenges of delivering inclusive education
the role of special schools
the experiences of the education system for people with learning disabilities.

Before you start, first answer the question in the activity below.

Activity 1 What’s fair?

Allow about 5 minutes

Click the link below to answer the poll on how you think the country’s education budget should be spent.

Once you have submitted your choice you can then see how others have voted.

You will return to this question at the end of the session to see if your views have changed whilst studying the course.

1 From ‘ineducable’ to ‘included’

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

You have followed the story of Bernadette ‘Bernie’ Lee in previous sessions. Watch the video below (which you first watched in Session 2), where Phil Lee talks about his sister’s education.

Download this video clip.Video player: Video 2 >

Video _unit5.1.1 Video 2

Transcript: Video 2

PHILL

So Bernadette got to school age, and there was nothing. And I-- I remember my father fighting long and hard to get something for her to the extent-- and constantly getting rebuffed to the extent that when it came round to rates time, he went up to the town hall. And he put the money on the desk and said, there's my rates. And I've deducted the education bit because you won't educate my daughter. Eventually, Bernadette got into a training centre. And that was-- that was what was accepted then, and Bernadette loved that, and it was-- but it wasn't really preparing her for later life. It was, you know, keeping her occupied.

End transcript: Video 2

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Video _unit5.1.1 Video 2

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Phil’s highly charged interview reflects the historical injustice that people with learning disabilities have faced in terms of getting an education. In the UK, for much of the 20th century, children assessed as having an IQ under 50 were deemed to be ‘ineducable’. Their families received a certificate confirming this, which meant that they could legally be denied an education.

Click through the slides in Slideshow 1 to see how this gradually changed in the UK from 1970 following the passing of the Education (Handicapped Children) Act.

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Online activity _unit5.1.1 Slideshow 1

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Activity _unit5.1.1 Activity 2 Where children are schooled

Allow about 5 minutes

What proportion of children with special educational needs and disabilities (SEND) do you think are educated in state-funded mainstream primary and secondary schools in England?

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Answer

The data for England collected in 2017 showed that 48% of students with SEND were being educated in state-funded mainstream schools. 44% were educated in maintained special schools. The other 8% were being educated in a mix of independent schools, non-maintained special schools or Pupil Referral Units. Interestingly, this is quite a different picture to Scotland, which has a stronger policy commitment to inclusion. In Scotland, over 90% of children with Additional Support Needs (ASN) are educated in mainstream schools (Scottish Government, 2018), although a proportion of these are schooled in special units on the main site. However, due to differences in how ‘SEND’ and ‘ASN’ are defined, it can be difficult to compare figures.

(Source: Department for Education, 2017)

You may have been surprised to learn that despite the national and international policy commitments to inclusive education, less than half of children with SEND actually attend a mainstream school.

1.1 Separate or together?

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Despite the national and international commitment to inclusive education, many parents find it difficult to secure a mainstream place for their child and are encouraged to seek places in special schools.

Since 2005, the number of children in segregated settings in England has actually been rising. Richard Rieser (2017), from World of Inclusion (an organisation that promotes inclusive education), argues that this is becoming more common-place for two main reasons:

cuts to school budgets which are making it more difficult for mainstream schools to offer the support that children with special education needs require
the Government’s commitment to setting up more special school academies and special free schools to support ‘parental choice’.

OU academics John Parry et al. (2013) have suggested that delivering good inclusive education can be difficult in part because of the historical legacy of special education. This is covered in the next section.

2 The role of special education

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Before the passing of the Education (Handicapped Children) Act 1970, thousands of children with learning disabilities were being educated in special schools. Many of these schools had been set up by parents, desperate to ensure that their children could access education that would not otherwise be provided by the state (Rolph, 2005). As you saw in Activity 2, a high number of children with special educational needs continue to be taught in segregated settings – in fact, the numbers are rising.

Figure _unit5.2.1 Figure 1 Special schools have a long history and continue to be popular with some parents

Activity _unit5.2.1 Activity 3 Reasons to choose special education

Allow about 5 minutes

Can you think of a reason why a parent might continue to opt for a special school for their son or daughter?

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Answer

Clare Palmer, mother of Elinor, who you met in Sessions 1 and 2, said: ‘As a parent of a child with profound learning disabilities, without words, needing total personal care, without the motor skills to hold a pen, without the understanding of what a pen is, what I most wanted was a good special school.’

Parents are often persuaded that special schools will provide an education more tailored to their child’s needs, in an environment that will be more nurturing. Some parents have concerns that their children may find it more difficult to develop friendships in mainstream school and that they may be subjected to greater levels of bullying. Cuts to school budgets have also created a climate in which fewer mainstream local schools appear to be equipped to effectively support disabled students. For all of these reasons – and others – many parents continue to seek places for their children in special schools.

The movement to inclusive education for children and young people with learning disabilities has been controversial. While most people acknowledge the right to an inclusive education for children with learning disabilities, there is a lot of debate about how well it works in practice. Even Baroness Warnock, whose 1978 report was instrumental in the shift towards inclusive education, later expressed concerns about the isolation, marginalisation, unhappiness, bullying and disaffection experienced by children and young people with learning disabilities in mainstream settings.

2.1 Attending a special school

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

But what is it like to actually attend a special school?

Activity _unit5.2.2 Activity 4 First hand experiences of going to a special school

Allow about 10 minutes

Watch this video of Dayo, Cian, Shaun and Terry discussing their experiences of special education.

Download this video clip.Video player: Video 3 >

Video _unit5.2.1 Video 3

Transcript: Video 3

DAYO

Yeah, I had some positive times when I was in school, when I was in college.

CIAN

When I was very young, from when I was about 3 to 5, I went to a mainstream primary school. This was when I was like in reception class. But I was so badly behaved that the teachers could not be dealing with me. So I had to go to a special school. The thing about the special school is because of my autism and the environment I was kind of in, I had a lot of anxiety, you know. And, but I think the teachers, obviously, the teachers never really gave me the benefit of the doubt.

SHAUN

My special school, [INAUDIBLE] one was, again, in between. I had people with a disability trying to pull my trousers down, which was very inappropriate and very difficult. And then when I was 15, I spoke to my table, and said that I had been sexually abused. And then I wascalled gay. And so that was even more difficult.

TERRY

I was abullied a lot, called names, frequently attacked and all that sort of stuff. The good bits was when I got into secondary school. I was good at sports. So I can go to competitions for the school.

DAYO

I used to-- like whenever-- whenever there's a lesson that I used to go to like science and science and maths. I even do, was it PE when I was in school. And I also did the, when we , did the drama, when we did the play called Joseph. And I was the narrator, you know. It was-- it was-- a lot-- a lot-- a lot of-- it was a lot of good experience.

End transcript: Video 3

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Video _unit5.2.1 Video 3

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Pick out some of the experiences that people talked about in relation to their experience of special school:

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While there were some positive experiences recounted by the people on the film, you may have been surprised by how many bad experiences they discussed. This even included a case of abuse not being taken seriously. The film does not convey experiences of school that were highly supportive or nurturing. However, Dayo and Terry did give examples of some of the good things they did while at special school, such as getting involved in sports and drama.

2.2 Working in a special school

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

In Video 3 you listened to people discussing their experience of being a student at a special school. But what is it like to work in a special school? What are the benefits and what are the challenges?

Activity _unit5.2.3 Activity 5 The benefits of special schools

Allow about 10 minutes

Listen to Clare Savory, Head of Science at Parkside School in Norwich, talking about why she thinks there is still a need for special schools. As you listen, make a note of some of the positive aspects of teaching in a special school that Clare reports.

Download this audio clip.Audio player: Audio 1 >

Audio _unit5.2.1 Audio 1

Skip transcript: Audio 1

Transcript: Audio 1

CLARE SAVORY

Parkside School is basically, it's a complex needs school for children from the ages of 7 to 8 all the way up to 18. We have currently enrolled, we have 166 students on roll at the moment. And they have a whole range of different needs. So we have some students with autism. We have children with global developmental delay. We have children with Down syndrome. We have some children with fragile chromosome syndromes as well. So a real mixture of different students that we have.

They tend to come here after being in a mainstream setting. So we have two different intakes. We have students that come in from year 3. And we have students that come in from year 7. And occasionally, if we go to panel with it, we'll have students that are coming in year 9 and 10 as well.

So they tend to come to us as a result of the fact that they have not coped well in the mainstream environment. Maybe they've had just a one-to-one teaching assistant and they've been kind of segregated from the rest of the class, or their behaviour has not been manageable within a class setting of 30-plus students. And they tend to come to us with quite low sort of confidence. Often they've been excluded or they've been on a managed move. And they tend to stay with us all the way up through to 16, and some of them up to 18. So yeah, lots and lots of different types of student.

It's my personal opinion that in mainstream they've basically been bottom of the rung. Through the entire time that they've been there, they have been segregated. Often children with really high behavioural needs will be one-to-one with a TA in a mainstream school. And here, you see them start to open up and feel capable and feel like they can do things independently.

And we've had some real amazing stories. We had a young man who now he's got his driving licence. He's actually working as a teaching assistant in a neighbouring school. And I don't think that would have happened for him if he'd have been-- I think he would have been swallowed up in the mainstream environment. Whereas here, we can kind of nurture those skills and their interests as well.

We can base lessons around specific interests, because we can create bespoke curricula that are fully encompassing of the things that our students need. And as a result of that, I think we get huge progressmade actually. And confidence, you see their efficacy sort of rise as they go through the school. We can see them starting to realise, oh, no, I can do this. I am good at this. And that's a really wonderful feeling.

End transcript: Audio 1

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Audio _unit5.2.1 Audio 1

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Discussion

Some of the positives you might have noted from Clare’s account were:

the children often arrive at Parkside after difficult experiences in a mainstream school. The special school offers opportunities for students to be less segregated in Clare’s view.
the school can nurture students’ skills and interests.
the school can also provide support and education that is more tailored to the individual. This can help students’ confidence to grow.

Despite calls for a fully inclusive education system, Clare has shown that there can be significant benefits for some students who attend a special school. However, in the next section you will explore some of the benefits and challenges of delivering inclusive education.

3 Inclusive education in practice

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Advocates of inclusive education argue it shifts thinking away from a ‘deficit model’ where the focus is on what a child cannot do, towards a ‘social model’, where the focus is on what the school can do to adapt to the child’s needs. Proponents of inclusive education also argue that it provides a unique opportunity to model an inclusive world, where non-disabled children can learn to communicate and form friendships with children with learning disabilities through common interests and activities. The argument made is that society can never be truly inclusive if people are separated from one another from school age onwards.

International research (Hehir et al., 2016) has shown that across the world, children with special educational needs benefit academically and socially when schooled in inclusive environments. The evidence also shows that the impact of inclusive education on non-disabled students is neutral or even positive. The argument made is that good inclusive teaching benefits everyone in the classroom.

Despite the research, it can often be difficult for parents and teachers to envisage what a good example of inclusive education looks like. In the next activity you will watch a video about Eastlea School. This will enable you to see a whole-school approach to inclusion.

Activity _unit5.3.1 Activity 6 Inclusive education in action

Allow about 10 minutes

Watch this video about Eastlea School then answer the question that follows.

Download this video clip.Video player: boc_ld_1_session4_video4.mp4 >

Skip transcript

Transcript

[MUSIC PLAYING]

EMMA LANE:

Eastlea is a very inclusive and diverse community. We have over 67 languages spoken. And we have a larger than average number of students on the SEN register, approximately 17% of the population. We also have an on-site resourced provision for 15 students with a complex needs learning profile. And we have around 20 other students that qualify for higher needs funding.

TOM FITZPATRICK:

Teaching assistants aren't always subject specialists. It can be difficult to make sure that they understand what it is that you're trying to get the students to access. So the way around that is that we worked as a department, all of the subject specialists, to plan the differentiated work that matches the Scheme of Work that the other students are doing, which is provided to the teaching assistants before they come in. And it's available for anyone to see on our Humanities Department area on the shared site.

Then talking to the teaching assistants when they're in the classroom, but also in advance, and saying, you know, this is what we're aiming for, this is what we'd like them to achieve. Do you think this is the right level for them? Can we make it a bit different? What is it that I need to be able to do for them to access it?

ROHANA BEGUM (TEACHING ASSISTANT):

Fahad is doing, in the table he put down which one is less and which one is more. So he counts and divides which one is more and which one is less. He's doing really well at the moment. He is progressing. Is this more than this? Which one is bigger? 2 or 3? 3 is bigger. Can you circle it? Which one?

TEACHING ASSISTANT:

Which one is more, more flowers here? Which one? Can you cut?

ITORO ONATERERY (TEACHING ASSISTANT):

Natalia is using the number line to apply the negative numbers and positive numbers as well. Minus 7 plus 3. Can you find minus 7 on the number line? Where's minus 7?

NATALIA:

Forwards.

ITORO ONATERERY:

Good, forward. So minus 7 plus 3 equals--

NATALIA:

Minus 4.

ITORO ONATERERY:

She's actually making progress. Because when she started, she started on the lower level P-Scale, level 5. And now she's gone up to level 1. So she has gone up four levels now. And then she is doing 10 minutes work now. Later on we're going to give her a reward-- 10 minutes music, because she likes music. We give her the iPad. She's going to listen to music.

And then afterwards, she's going to do her work again.

TEACHING ASSISTANT:

What comes after 2?

ANDREI:

2. 3.

TEACHING ASSISTANT:

Good boy.

ANDREI:

TEACHING ASSISTANT:

What comes after 3?

ANDREI:

TEACHING ASSISTANT:

Good. After 4? What comes after 6?

ANDREI:

TEACHING ASSISTANT:

Good boy.

ANDREI:

TEACHING ASSISTANT:

Well done.

ANDREI:

TEACHING ASSISTANT:

Give me high five! What a good boy. Oh.

TOM FITZPATRICK:

I think the inclusive approach works at Eastlea. I also think that they're included in society in a way that they just wouldn't be if they were attending a special educational needs school, where they're just separate, and often that I think that they probably wouldn't meet anyone else outside of that school in their daily lives. Maybe between home and school there's not really that many other places they're going. So one of the big things here is that they get a lot of interaction with other people from around the school.

And that benefits those people as well, because they're becoming more tolerant, they're understanding needs of others much more. I just think it's a much better way of running a school.

HASSAN:

It makes me feel, like, part of this bond that I have with them. Not only them but other people. But our bond is special, because we've known each other for a long time.

ISMAEL:

I'm proud of what we've done together, with revising as well. Because something-- us three have a strategy like, if someone doesn't understand something, we share with each other. So then we find a method so we all understand it. For example, it could be short words so we all understand something like the same thing. So that when it comes to the test none of us struggle.

HASSAN:

If we don't understand something, then we try to help each other. And I think we got that from last year, because we had a teacher called Mr. Agidi in science. And he taught us that you are not only here to help yourself. You're here to help each other.

End transcript

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Why do you think Eastlea School is able to be so inclusive in its approach?

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Answer

There are lots of reasons why Eastlea School is delivering high quality inclusive education. Some things you may have identified are:

a deep commitment to inclusion through all levels of the school – from the most senior members of staff, to the students
students are given clear messages about the benefits of inclusion and how they can help themselves, by helping each other
the school has explored creative approaches to adapting the curriculum, but they talk about these things as very straightforward and simple things to do
disabled students are very present in the classroom and recreational areas. The school is definitely aspiring to ‘inclusion’ over ‘integration’.

Eastlea School is a model of good practice and shows what can be achieved when the commitment to genuine inclusion is present. But delivering this level of inclusion can also come at a cost, as you will learn in the next section.

4 Challenges and benefits of delivering inclusive education

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

A number of factors can make it difficult to achieve inclusive education in practice, as you will learn in the next activity.

Activity _unit5.4.1 Activity 7 The difficulties of delivering inclusive education

Allow about 10 minutes

Watch Elaine Cowin, a Special Educational Needs Coordinator (SENCO), at an inner-city primary school, discussing some of the challenges she faces in her day-to-day work. Then complete the table below, reflecting on the challenges and benefits of delivering inclusive education.

Download this video clip.Video player: Video 5 >

Video _unit5.4.1 Video 5

Transcript: Video 5

ELAINE COWIN

Schools face a lot of challenges in delivering inclusive education, I think, starting off from things like funding because a child may come to your school with an educational health care plan, and that may be partially or fully funded. But even when it's fully funded, that doesn't actually cover all of the costs that it costs a school to provide something like a learning support assistant to support that child the whole day.

It may come with enough money to fund them for 3/4 or 4/5 of the amount of money that it covers. But you can't hire somebody for 3/4 of a day. You have to fund them for the whole day. So schools are financially run at a loss if they take children with educational health care plans. And that can add up.

If you only have one or two, then school budgets can manage that because they have certain allocated funding for doing that. But that doesn't grow with the amount of children with needs that you have. That's a fixed amount of money. So there's no financial incentive for schools to accept children with educational needs like that. In fact, it's exactly the opposite. You're running at a loss, sometimes quite considerably. And my school, particularly, struggles financially with that.

I think at the forefront of our ethos as a school is that we want our children to know that children with special needs are a part of our community and that they have as much right to be in our community as anybody else. And I also see the benefit for that, for all the children. It helps develop a real sense of empathy and understanding of everybody. And I also think it makes teachers better.

Essentially, if you're teaching children with special needs, you have to be a good teacher. You have to teach something well. And that impacts everybody. So there isn't anything I've learned from teaching children with special needs that I haven't been able to use for other children. So it's actually had great, positive benefits for our whole school.

End transcript: Video 5

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Session 4 compulsory badge quiz

Video _unit5.4.1 Video 5

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Table _unit5.4.1 Table 1 Challenges and benefits

Challenges	Benefits
Table 1 Challenges and benefits 1	Table 1 Challenges and benefits 2

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Answer

Table _unit5.4.2 Table 1 Challenges and benefits (completed)

Challenges	Benefits
There is not enough funding to cover the full costs of educating some children with special educational needs and disabilities in mainstream schools. This means that inclusive schools can find themselves running at a financial loss.	Elaine says that to effectively teach children with special education needs and disabilities, you need to teach well. This means the quality of teaching can be very high in inclusive schools, which benefits all students.

In Elaine Cowin’s experience, delivering inclusive education has benefits for the whole school. She argues that it can lead to higher quality teaching which impacts positively on all students. But you may have been surprised to hear about the funding issues which can mean schools who are inclusive run at a financial loss. Currently, it seems that for some schools, there are simply too many disincentives at play to enable them to deliver what is actually national – and international – education policy.

5 This session’s quiz

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

It’s now time to complete the Session 4 badged quiz. It’s similar to the previous quizzes but this time instead of there being 5 questions there are 15, covering Sessions 1 to 4.

Remember, this quiz counts towards your badge. If you’re not successful the first time, you can attempt the quiz again 24 hours later.

Open the quiz in a new tab or window by holding down Ctrl (or Cmd on a Mac) when you click on the link. Return here when you have finished.

6 Summary of Session 4

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

It may have come as a surprise to you to learn that children with learning disabilities could legally be denied an education until as recently as 1970. Before this time, parents fought hard to create educational opportunities for their children, and this helped to create the system of special schools that continue to exist today. While national and international policy has emphasised that children with special educational needs and disabilities have a right to an inclusive education, there continue to be many barriers to achieving this.

Have you changed your views of inclusive and special schools now you have completed this session? Below is the same question you were asked at the start of this session – will you give the same answer?

Activity _unit5.6.1 Activity 8 What’s fair?

Allow about 5 minutes

Click the link below to answer the poll on how you think the country’s education budget should be spent.

Link: Deciding how to use the country’s education budget

Once you have submitted your choice you can then see how others have voted.

In this session you explored:

the history of education for people with learning disabilities
the benefits and challenges of delivering inclusive education
the role of special schools
the experiences of the education system for people with learning disabilities

You are now halfway through the course. The Open University would really appreciate your feedback and suggestions for future improvement in our optional end-of-course survey, which you will also have an opportunity to complete at the end of Session 8. Participation will be completely confidential and we will not pass on your details to others.

You can now go to Session 5, which will look at employment and the world of work for people with learning disabilities.

Want to know more?

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Go to the World of Inclusion website to learn more about inclusive education: http://worldofinclusion.com
The Alliance for Inclusive Education have collected testimonies from people about their experiences of education: https://www.allfie.org.uk/ uncategorised/ how-was-school/

Introduction

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Many people with learning disabilities want to work, but in practice very few manage to find and keep jobs. While the employment rate within the general population in England and Scotland hovers around 74-75%, for people with learning disabilities who are known to their local authority, the figure is approximately 6%. The Welsh and Northern Irish governments do not publish data on how many people with learning disabilities are in paid work.

Despite lots of policy focus on getting more disabled people into work, in practice, the numbers of people with learning disabilities in paid work have barely changed at all in recent years. For that reason, it is really important to learn more about what helps people into work, and what the barriers might be.

Download this video clip.Video player: Video 1 >

Video 1

Transcript: Video 1

TERRY

So they said ‘You can teach in your cooking course for disabled people’. So that's what I did. And, yeah, I got paid for it, which was cool.

SHAUN

My high point was getting a volunteer job at Cancer Research. The low point though was that I got blamed because someone stole a jumper.

CIAN

I was basically there to kind of stack things on the shelves.

CHARLENE

The company that I'm with, Access All Areas, to me, if I didn't have them, I'd be nowhere to be honest. Because it's kind of grown me as an actor and also grown me as a person.

End transcript: Video 1

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Video 1

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In this session you will explore:

what helps people with learning disabilities get and keep a job
what makes it more difficult for people with learning disabilities to get and keep a job
what is good or bad work for people with learning disabilities.

1 The importance of work

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

While having a job may not be right for all people with learning disabilities, for many, it offers a number of potential benefits. As well as providing an income, work can give people a sense of purpose (‘a reason to get up in the morning’) and help them to make social connections. In the video below, listen to Phil Lee talking about a job his sister, Bernie, used to do, and why it was important to her.

Download this video clip.Video player: Video 2 >

Video _unit6.1.1 Video 2

Transcript: Video 2

PHIL

When she got into her teens and early 20s, she was at a centre. And they used to do industrial work. So I think it's what they used to call it.

A lot of people in the country actually did industrial work then, factory work. But Bernadette used to do a bit of that assemblies and that was then later frowned upon as demeaning for Down syndrome people. But actually, Bernadette never regarded it as that. She loved it.

And it's a self-worth thing because she could do that. And it also gave her and I another thing to talk about. My dad always use to quote a story. We were talking and I said to Bernadette, how have you been getting on at work? Because she used to make different things.

So, what have you been making this week? So we had a chat and that was nice. And then she said to me, what have you been doing at work today? So it gave us that common ground.

End transcript: Video 2

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Video _unit6.1.1 Video 2

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Phil argues that the factory job was work that Bernie enjoyed. It also meant that she and Phil shared some ‘common ground’ and could talk together about their working day. However, when industrial work for people with learning disabilities fell out of favour, this job was taken from Bernie. As you will learn in this session, access to work for people with learning disabilities is often dependent on government policy and funding, and the attitudes of others.

2 Finding a job

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

For many people with learning disabilities, the first hurdle to overcome is getting a job in the first place.

Figure _unit6.2.1 Figure 1 Job application processes are often not accessible to people with learning disabilities

Often, people with learning disabilities are not encouraged to even apply for work. And if they do, it is not uncommon to hear stories of a person applying for a number of jobs, and never being called for an interview.

Activity _unit6.2.1 Activity 1 The barriers

Allow about 5 minutes

Why do you think people with learning disabilities are less likely to be put forward for jobs and/or shortlisted for interview?

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Answer

Research (Coleman et al., 2013; Roulstone et al., 2014; Mencap, 2018) shows that a number of factors affect people’s chances of securing a job. These include:

discriminatory attitudes towards learning disability
low expectations about people’s capabilities
a lack of suitable skills or qualifications
concerns about the level of support a person might need
lack of personalised and flexible employment programmes.

The Care Act 2014 (England) is clear about the requirement for commissioners to support disabled people to gain and retain work. Despite this, employment levels for disabled people are unacceptably low. It is even harder for people with more complex learning disabilities to find work.

People with learning disabilities and their families also believe that the benefits system can be a barrier to getting a job. This is because if the job doesn’t work out it can have an impact on benefits, which leaves people scared to take the job in the first place. It can make people scared to take a paid job in case it doesn't work out, which can have an impact on benefits.

It is also important to acknowledge that for some people with learning disabilities, the ambition of paid work may be unrealistic and not what they or their families want.

3 Having a job

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Being in work can be a positive experience for people with learning disabilities, but it can also present some challenges.

Activity _unit6.3.1 Activity 2 Experiences of work

Allow about 10 minutes

Watch this short video of some of the actors from Access all Areas, a theatre company for people with learning disabilities, talking about their experiences of work over the years. Then answer the questions below.

Download this video clip.Video player: Video 3 >

Video _unit6.3.1 Video 3

Transcript: Video 3

CIAN

At a charity shop that shall remain nameless, a local charity shop, I did some awful work experience there. I was basically there to kind of stack things on shelves. But that's not where-- that's why I thought I was going to be there to do. But I wasn't. I was putting clothes on cloak hangers behind the charity shop, in a little room that smelt pretty bad. And it was full of really rough, unpleasant people.

DAYO

Yeah. I always like enjoying the acting. And it's one of my favourite things. And it's also part of, it’s also a learning experience, as well.

TERRY

I did, through Lewisham college, I was actually a support teacher for cooking. Would you believe it? Because they wouldn't let me do my cooking course because of health safety with my wheelchair So they said you can teach in the cooking course for disabled people. So that's what I did. And I got paid for it, which was cool.

DAYO

You know, since I've been on telly, I've also done theatre, and also done the diploma. Yeah so things have been absolutely a step up.

End transcript: Video 3

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Video _unit6.3.1 Video 3

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Cian’s experience at the charity shop was:

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Dayo describes his acting work with Access all Areas as:

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Terry’s job at the college meant he could:

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Video 3 showed that people with learning disabilities have varied experiences of the workplace and finding a job.

Unfortunately even if a person with learning disabilities secures paid employment, it is not always easy for them to keep their job. Make a note of the things that might make it difficult for a person with learning disabilities to keep their job.

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Answer

Research (Coleman et al., 2013; Roulstone et al., 2014; Mencap 2018) shows that some people with learning disabilities face harassment or bullying when in the workplace. Some people are reluctant to disclose their learning disability to colleagues at work, for fear of being stigmatised. This can result in people not getting the workplace adjustments that they are entitled to under UK Equality legislation which makes it more difficult for them to keep their job.

3.1 Included exclusion

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Lee Humber, an academic in the social history of learning disability, interviewed people with learning disabilities about their experience of employment over time. His research (2014) showed that people with learning disabilities sometimes experience what he describes as ‘included exclusion’ at work. By this he means that even when people hold down their jobs – sometimes for very long periods of time – they don’t feel ‘part of the team’. For example, here is Margaret, a 51-year old woman with learning disabilities, talking about her employment in a North London biscuit factory:

It was quite a big factory. I never really mixed with the people there. I mostly kept myself to myself. They didn’t seem very sociable. They did used to say hello and that but I used to take my sandwiches for lunch. I was mostly on my own there.

(Humber, 2014, p. 283)

Equality legislation (for example the Equality Act 2010) is in place to prevent disabled people from being discriminated in the workplace. But Humber’s research shows that in order for people with learning disabilities to have a good experience of work, employers need to do more than merely avoid discrimination. Employers need to take steps to ensure that colleagues with learning disabilities are respected, valued and supported to feel included.

3.2 Making reasonable adjustments: making time

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

A person with learning disabilities who reviewed this session said that in his experience, workplaces aren’t always very supportive if you need to work at a slower pace. In the next activity, you will learn how an organisation changed its ways of working to make the workplace more inclusive.

Activity _unit6.3.2 Activity 3 An inclusive work environment

Allow about 15 minutes

Ajay Choksi has been employed by the Rix Centre at the University of East London as a technical assistant for a number of years. Watch this video of Ajay and his colleagues talking about his work at the University. The first half of the film is focused on what Ajay does at work. The second half of the film focuses on the role of his employer.

Box _unit6.3.1

This film and its captions were produced by Ajay Choksi. We would like to thank Ajay and the team for making this film for the course.

After you have watched the film, complete the table below. Try to think of at least three points under each column.

Download this video clip.Video player: Video 4 >

Video _unit6.3.2 Video 4

Transcript: Video 4

[MUSIC PLAYING]

ANDY MINNION

About how it all began?

AJAY CHOKSI

I started in the RIX Centre, year 2007.

ANDY MINNION

That's great. And when you look back on that, it seems like a long way away, or what?

AJAY CHOKSI

Well, it has been since 12 years now.

ANDY MINNION

Brilliant.

AJAY CHOKSI

Yeah.

ANDY MINNION

12 long years.

AJAY CHOKSI

12.

ANDY MINNION

Yeah, yeah. OK. What's your role?

AJAY CHOKSI

I am a technical assistant. In fact, my character role is Wiki--

[MAGICAL FLOURISH]

--Master.

ANDY MINNION

What's that, then?

AJAY CHOKSI

Well, it's simple. When you grab some of your hand, and when you see the thumb--

ANDY MINNION

Oh, I see.

AJAY CHOKSI

Get that to connect to your thumb. If you show your sign, the W is the Wiki. If you go down, it's Master. Together, Wiki Master.

ANDY MINNION

And what's a wiki?

AJAY CHOKSI

A wiki is a simple, easy website to build.

ANDY MINNION

Oh, I see. Yeah, yeah. Great. What sort of work do you do, then? What are the, kind of, key aspects of work?

AJAY CHOKSI

My key aspects of work, which is building wiki websites--

ANDY MINNION

Uh huh.

AJAY CHOKSI

--international and national events, workshops and lectures, supporting students to use multimedia tools.

ANDY MINNION

All right. And which of those do you think you like best, and why?

AJAY CHOKSI

I like the RIX. I like the technology stuff to use. I like chatting with my colleagues, going out on our lunches, helping to teach with other students. And I'm more inspired telling about my story.

ANDY MINNION

That's brilliant. Yeah, yeah. That student stuff, what do you support them to do?

AJAY CHOKSI

I teach with the students, making more help with using technology, using multimedia tools.

ANDY MINNION

Perfect. We were very proud of you, weren't we, when you did that new workshop with United Response?

AJAY CHOKSI

Oh. Oh, yes.

ANDY MINNION

How did that feel, teaching by yourself? Could you tell us about that?

AJAY CHOKSI

OK. When I came along, travelling by myself, went to the United Response. I gave a workshop with a face-to-face delivery, a teaching lecture. And I explained about how to use your wiki, sharing wiki, and inspired telling other people's story.

ANDY MINNION

That's impressive. And how did that make you feel?

AJAY CHOKSI

I feel very excited, good, and proud of myself. What impression did you have for my training at United Response?

SARAH FROST

Well, Ajay, when I walked into our Teddington enterprise hub, I immediately saw that you were totally in control, were very relaxed and very confident in an incredibly busy environment. And I was just so impressed that the environment felt inclusive and that you felt so relaxed in that environment. So it was really a mix of people filling very different roles just working together harmoniously.

ANDY MINNION

Inclusion, in other words.

SARAH FROST

It's inclusion. It's inclusion. And that's how it should be.

AJAY CHOKSI

What factors have helped to make my experience of paid work so positive?

ANDY MINNION

Well, I think there are two factors. I think one's teamwork because you're very much part of the team and built your own working relationships with everybody in the team. But I think the second part is that we recognise that we really needed to think about how we did the inclusive work space. You know?

So that meant that the wider team worked together and often discussed with each other how we could include you better in the different aspects of the work we did, like in meetings, in workshops, and in discussions about strategy and things like that, thinking of what approaches to use that could really involve you and make sure you weren't just in the room.

I think the key point about giving you support is making sure that we make the time to work with you, to prepare for meetings or events or presentations, et cetera, but also to reflect afterwards with you so that we make sure that you're learning and developing as you go.

How has it changed over time? Well, you've become more and more professional. You've taken more and more initiative. You've been able to work more independently as time's gone on. And you've become more confident about making presentations and much more blended into the team as time has gone on.

I think the key challenge has been that we needed to find more time and give more time to explaining things, to unpacking things, and allow things to unfold in meetings and discussions in workshops at a pace that kept you with us rather than leaving you behind.

How do we resolve that challenge? Well, I think, as a workplace, we shifted the pace of how we did things. We became more thoughtful and reflective. We did things like-- we drew diagrams more. We made sure that we were a bit simpler in our use of language and jargon and things like that.

All of those, I think, are good things. And they're all things that all of our work team benefited from. It's made us a better place to work. Looking ahead, what sort of picture do you have of your future with RIX, Ajay?

AJAY CHOKSI

In my head, imagination of the future with RIX are research skills, video production, and the last one is a leadership training workshop for now. So that is my imagination in my brain in the RIX future.

ANDY MINNION

Well, good luck.

AJAY CHOKSI

Thank you.

[MUSIC PLAYING]

End transcript: Video 4

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Video _unit6.3.2 Video 4

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Table _unit6.3.1 Table 1 Ajay’s experience of work

What is good about Ajay’s work?	How have Ajay’s colleagues at the Rix Centre supported him at work?
Table 1 Ajay’s experience of work 1	Table 1 Ajay’s experience of work 2

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Answer

Table _unit6.3.2 Table 1 Ajay’s experience of work (completed)

What is good about Ajay’s work?	How have Ajay’s colleagues at the Rix Centre supported him at work?
Ajay’s job gives him opportunities to socialise with his colleagues	Ajay’s colleagues make time to prepare him for certain tasks, like presentations and meetings
Ajay’s job is varied and interesting	They make time to reflect on what is working well for Ajay, and what can be improved
Ajay has progressed in the job and is doing new things and taking on more responsibility	They use more visual aids, like diagrams, to enable Ajay to be included
Ajay has become more independent at work	They use simpler language
Ajay has good relationships with his colleagues	They encourage and support Ajay to think about his future plans at work

What may have struck you most about this film is that Ajay appears to be a genuine member of the team. His colleagues adapted their working practices to help achieve this. Taking more time both to prepare and to reflect is not always easy for busy organisations struggling to meet deadlines or with pressures to deliver services or goods. But in this film, Andy Minnion suggests that making the changes needed to create an inclusive workplace can have benefits for everyone.

4 Supporting people into work

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Although some people with learning disabilities look for work independently, many people are supported through schemes that are publicly funded. These schemes are usually funded by local authorities or the NHS, which view getting people into work as making a positive contribution towards good health and social care.

The National Development Team for Inclusion (NDTi) carried out a research project (Grieg et al., 2014) which looked at what helps people with learning disabilities into employment. They wanted to know if particular approaches were more successful than others, and what the cost of these different approaches might be.

Activity _unit6.4.1 Activity 4 The cost of supported employment

Allow about 5 minutes

How much do you think it costs on average to help a person with learning disabilities find a new job, or keep a job they already have?

Interactive content appears here. Please visit the website to use it

Discussion

In actual fact, NDTi’s research showed that on average it costs £8218 to help a person with learning disabilities find or retain work. But this is just an average. The actual spread of the cost was much wider than this. Some services were doing it for as little as £208, and some cost £57,640 per person.

Interestingly, the NDTi’s research showed that services that were doing really well at getting people into work, and helping people to keep their jobs, were by no means the most expensive. Further, the research showed that these good employment services also managed to get a whole range of people into work, including people with mild, moderate and severe learning disabilities.

Activity _unit6.4.2 Activity 5 What works?

Allow about 5 minutes

What things do you think might help improve a scheme’s chances of supporting a person with learning disabilities to get and keep work?

Interactive content appears here. Please visit the website to use it

Answer

The NDTi’s research showed that the most important factors were that the services were highly personalised, with excellent support available both for the individual and the employer.

Their research also showed that the local authority and NHS Trusts who were paying for these support services had a major part to play as well. Employment outcomes are improved when local authorities and the NHS view getting people into work as a real priority.

5 Working with other people with learning disabilities

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

From the turn of the 21st century, opportunities have opened up for people with learning disabilities to undertake paid work where they are seen as ‘experts’. Sometimes these opportunities come about through people’s involvement in self-advocacy groups. These are organisations run for – and by – people with learning disabilities. You’ll read more about them in Session 8.

In the next activity, you will watch Shaun Picken talk about his experience of becoming a consultant through self-advocacy organisation My Life My Choice.

Activity _unit6.5.1 Activity 6 Self-advocacy as a route to employment

Allow about 10 minutes

Watch this video of Shaun talking about his experience of work at My Life My Choice. As you watch note down:

how Shaun’s life has changed since he became a consultant with My Life My Choice
what type of work Shaun is involved in.

Download this video clip.Video player: Video 5 >

Video _unit6.5.1 Video 5

Transcript: Video 5

SHAUN

I got told that I only had 10% chance of working. So I wasn't really given much hope until, luckily enough, I came to My Life My Choice. How it happened was I was at a bus training group.

I was helping them out. I wasn't really doing like, the work. I was just helping out. So, they were like, right, so you could do the travel training. And I was like, cool. I can be a travel trainer.

So that's how it started. And then I just went from there, all way up. And now I'm a consultant and kicking behind.

So My Life My Choice is a self advocacy charity who is to do with learning disabilities and we work with people with learning disabilities. So what it means to me is pretty much, without My Life My Choice, I would still be on the computer 24/7, doing nothing.

So the jobs I do with My Life My Choice are as a consultant because I'm now employed by My Choice, so I'm a staff member. I do gig buddying, which is basically taking someone out who is not going out socially. And we take them out socially to gigs, or museums, or theatre, or things like that.

We also do travel buddying, which is helping the person travel independently whether that's by train, or by bus, or walking, even. And we also do care and treatment reviews, which is going into assessment treatment units or locked-up units and helping the person try and get out back into the community. Most of the people I've actually travel trained, actually, I work with. So it's like they always come up to me and their confidence have completely shot through the roof.

We've just got our new gig buddy colleague in. So she will be running the reigns. And hopefully soon enough, we'll be out, and socialising, and causing mayhem.

End transcript: Video 5

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Video _unit6.5.1 Video 5

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Answer

- It has given Shaun hope of a working life
- Shaun has developed more self-esteem
- Shaun isn’t sitting in front of a computer ‘24/7’ anymore.
- Shaun is a travel buddy for other people with learning disabilities
- Shaun is a gig buddy, helping other people with learning disabilities to develop a social life
- Shaun takes part in Care and Treatment Reviews
- Shaun is now a paid consultant for My Life My Choice.

Much of the focus in this session has been on paid work, however Shaun’s experience shows that voluntary work (or ‘helping out’) can sometimes be an effective route into paid employment.

While some people say that they are forced into voluntary work because they have been unable to secure paid employment, Shaun’s experience highlights that learning disability organisations can help people make that step from voluntary work to paid employment and at the same time help to develop their skills, confidence and social networks.

6 The impact of getting a job

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

This session has shown that there are a number of barriers to people with learning disabilities getting the jobs they want. However, as Shaun’s experiences highlighted in the previous section, finding a good job can make a big difference to their lives. Now complete Activity 7 which looks at another example of the positive impact work can have.

Activity _unit6.6.1 Activity 7 Positive stories of work

Allow about 10 minutes

Watch this video of people with learning disabilities at work. Then answer the questions below.

Download this video clip.Video player: Video 6 >

Video _unit6.6.1 Video 6

Transcript: Video 6

[MUSIC PLAYING]

CLARE

Hello, my name is Clare. I've made my life better at this job.

SOCIAL WORKER

We would encourage anybody to take somebody on. It only takes a little bit of time and a little bit of effort and a little bit of prompting to get a really, really good and loyal worker.

CLARE

My hopes and dreams are to stay in this job.

MATTHEW'S BOSS

He is a great team member. I gave him some training. And immediately on his first trial, he did virtually everything and hardly forgot a thing. So I mean he's just gone now from strength to strength. He's so reliable. He's so helpful. I couldn't do without him, basically.

KENNETH

This job made me feel great because like on this day I have a lot of freedom. And as they say, that kind of influences your-- you look like a healthy guy and a fit guy to be-- to be doing the bin job, so that-- that changed my life.

CAROLINE

My name's Caroline. I work in the kitchen doing everything-- pots, pans, cleaning. And at home, I have a little-- I have a flat of my own. I have pictures in the flat with horses, dogs. And it's fantastic job. I like doing it. I like the pots and pans, dishes, cutlery, cups, mucky pans, everything like they just get so mucky. They get all greasy. [INAUDIBLE] the hot water. It's very funny, doing it.

[MUSIC PLAYING]

SOCIAL WORKER

One of the places we visited was the airport. And the minute we came in here, he kind of lit up. He liked the idea of working here. So we watched what different people were doing. We watched the different roles. And one of them was a customer service assistant role. Sometimes employers can prejudge and look at people and think maybe, how would they be able to do this job? And I think it's only by seeing somebody do it that you can get over those barriers. So we got Ian in for a working interview. In fact, he only did two days of the working interview. And the manager just said, oh, he's brilliant, absolutely brilliant.

HANNAH

Hello, I'm Hannah Evans. I work at the Co-op in Oxford. And I am a customer service assistant.

HANNAH'S BOSS

The customers and staff love her. She's got such an effervescent personality. She's bubbly. And she naturally draws people towards her, which is great.

[MUSIC PLAYING]

GLENNIS

Hello, I'm Glennis Murray, Keith's mum. And we're very proud of Keith that he's got this job, which he enjoys.

SOCIAL WORKER

When you give out the free samples, everybody takes them. Is that true? Yes. They do.

KENNETH

Don't-- don't feel nervous or don't feel ashamed because what you have. People with disabilities can work because like if I-- like if I can do it, you can do it.

JOY'S BOSS

Don't be afraid or put up any barriers when it comes to thinking about employing someone with disabilities. Joy is a fantastic worker, fantastic part of the team. And it's absolutely no problem whatsoever.

SOCIAL WORKER

It really is important that employers do look at the overall picture and look and see what jobs could be done by somebody in their office or in the workplace with a learning disability.

KEITH

I just want to tell people who have a disability, don't give up. It does change your life around. And don't ever give up.

End transcript: Video 6

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Video _unit6.6.1 Video 6

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What can an employer do to support people with learning disabilities into work?

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Discussion

Some of the things you may have picked up from the film include: offering working interviews; providing training; having a positive attitude towards learning disability; looking at the overall picture to see which jobs might suit a person with a learning disability; not pre-judging someone’s ability.

What are the benefits to the employer?

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Discussion

These include the potential to employ hardworking, reliable and loyal employees. Employing people with learning disabilities can also give a positive impression and show that the organisation is inclusive.

What are the benefits to the employee?

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Discussion

In the film, some people commented that getting a job they liked had changed their life. It can provide enjoyment, a sense of satisfaction and a way to make new relationships.

The film shows that there can be many benefits to individuals and employers when people with learning disabilities are given the opportunity to work. One contributor to the video you have just watched emphasised to employers that they shouldn’t be afraid and mustn’t put up barriers. Films like this are important to show positive examples of where things are working well, and why.

7 This session's quiz

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Well done – you have reached the end of Session 5. You can now check what you’ve learned this session by taking the end-of-session quiz.

Session 5 quiz

Open the quiz in a new tab or window by holding down Ctrl (or Cmd on a Mac) when you click on the link. Return here when you have finished.

8 Summary of Session 5

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

This session has shown you that while many people with learning disabilities want to work, there are a number of barriers that can make this hard to achieve. People with learning disabilities have a lot to offer employers but they need to be given opportunities and support to fulfill their potential.

You have learned about examples of inclusive workplaces where people with learning disabilities are part of the team and are able to develop their confidence and skills. But you have also heard some of negative experiences, where employers’ expectations of people with learning disabilities were low, and the work available was poor.

It is important that more people with learning disabilities are given opportunities to do work if they want to – either in a paid or voluntary capacity. But this work needs to be meaningful and positive, in environments that are inclusive, respectful and supportive.

This session you explored:

what helps people with learning disabilities get and keep a job
what makes it more difficult for people with learning disabilities to get and keep a job
what is good or bad work for people with learning disabilities.

You can now go to Session 6.

Want to know more?

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

The NDTi have produced a lot of resources to help support more people with learning disabilities into work: https://www.ndti.org.uk/ our-work/ our-projects/ employment1/
You can also find out more about employment for those with learning disabilities through Mencap: https://www.mencap.org.uk/ about-us/ what-we-think/ employment-what-we-think

Introduction

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

In this session you will consider the health and wellbeing of people with learning disabilities.

Download this video clip.Video player: Video 1 >

Video 1

Transcript: Video 1

CIAN: Well, I have mental health problems, but they’re just seen as part of my disability. They're not taken seriously as mental health problems.

CHARLENE: I've got sent a letter saying that I need to pay them for my treatment because I didn't put the right benefits that I was getting.

TERRY: They thought that I was drunk because of my cerebral palsy.

SHAUN: I've had a very lucky time with NHS. The only people that I really don't like are 111 service just because they seem to think that when you have a headache, that you need an ambulance when it's not true-- especially when you're epileptic.

End transcript: Video 1

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Video 1

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As you learned in Session 1, a learning disability is not, in itself, an illness. The definition is dictated by people’s need for support in managing their lives successfully. But people with a learning disability do face particular challenges when it comes to health and wellbeing.

Statistics show that people with learning disabilities die on average more than 20 years earlier than the population of the UK (University of Bristol, 2018). Rates of obesity are also higher than average (Heslop et al., 2013) as it can be difficult for people to understand messages about healthy eating and exercise, and why they matter. Many people also have additional health problems such as epilepsy or diabetes, cerebral palsy or swallowing difficulties.

Despite all this, people often struggle to get good quality healthcare, even in the NHS.

In this session you will explore:

situations where making independent choices may conflict with a healthy diet and lifestyle
changes that can enable people to receive improved healthcare
ongoing weaknesses in delivering good healthcare and how failures have resulted in serious harm and preventable deaths
how health risks can be reduced if well managed
why people with learning disabilities can be vulnerable to loneliness.

1 What are some of the health risks?

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

People with learning disabilities make up about 2% of the global population. However, as you saw in Session 1, only a quarter of adults with learning disabilities are identified in English GP learning disability registers and are known to specialist learning disability services.

Figure _unit7.1.1 Figure 1 People with learning disabilities can face a number of additional health challenges

This is a big concern because people with learning disabilities:

are likely to be at risk from the determinants of health inequalities, like poverty and poor education
are more likely to live with multiple health conditions
are at increased risk of early (and avoidable) death – latest reports show average age of death at 58 (University of Bristol, 2018)
often have limited access to health information because of communication difficulties, low expectations, lack of support, poor understanding of mental capacity and lack of reasonable adjustments by health services
often rely on others, such as family carers or support workers, for help with access to healthcare; access can be poor if those people are not well informed themselves or there is a high turnover of workers
are entitled to an Annual Health Check and health action plan if aged 14 or over and they are on their GPs’ learning disability registers. However, in 2014 to 2015 just under 50% of those on registers had a health check (Public Health England, 2016).

People with learning disabilities face striking inequalities when it comes to their health. In the following sections you’ll learn more about why this is the case.

2 As independent as possible?

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Independence is a goal for many people with learning disabilities, and it is also a stated government policy. But what does ‘independence’ actually mean? And how do you balance independence with sensible and healthy choices?

Activity _unit7.2.1 Activity 1 Leah and Sheila: choice vs health

Allow about 20 minutes

First read the account from Sheila, whose daughter, Leah, has mild learning difficulties. This is Sheila’s perspective. Then, based on what you have read, write down what you think Leah and her support worker’s perspectives on the situation would be. Write down one sentence for each.

LEAH: AS INDEPENDENT AS POSSIBLE?

My daughter Leah is as independent as possible.
She maintains (with paid support) her own tenancy in the town where she wants to live, has a long-term relationship with a partner, has a small but important group of friends who mean a lot to her. She volunteers at two places where her help is welcome. She maintains close links with her family and family friends. She can travel on her own on familiar journeys. These are markers of independence which many people who have a learning disability would love.
Much of this has been gained through her own efforts and personal qualities. Yet to maintain this level of independence Leah needs the efforts of her immediate family. Because she lives as independently as possible the contributions we make are almost invisible. The visible bits are her social work assessments and reviews, her social care support hours and her small Direct Payment. But the bits we, her family, add are the bits which add richness, depth and joy. These are the 'added value’ provided by her family.
I’ve watched with concern as my previously fit, healthy, slim daughter has gained several stone in weight, lost fitness, core body strength and suppleness at a young age. I know that Leah's diet is harming her health in the short and longer terms. I also know that raising this concern with the people who provide her support will be seen as interfering. They have a case. Leah has capacity, some understanding of the health concerns and it could be said that she is making an informed choice, in the knowledge of the risks, to eat unhealthily and take little exercise.
The support of family carers can be, and often is, seen as interference and over-protection. At reviews of Leah’s support, I mention my concerns about her diet and heads nod. That’s as far as it goes.
Independence of the sort which Leah has achieved comes with privileges and risks. Leah exercises the privilege of choice in relation to her diet and lifestyle. In doing so she runs the risk of compromising her health. For a parent carer this is a tension which has no clear resolution.

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Answer

There are many different ways you could approach this. Here are two examples from each perspective.

View larger image

Figure _unit7.2.1 Figure 2 Differing perspectives on keeping healthy

Did these reflect what you wrote?

As discussed in Session 3, in relation to how Dora dresses, independence and choice are great, but the devil lies in the detail. Translating them into action can be hard. You will explore this further next – with diet again the focus.

2.1 The right to choose

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

How do you support someone to make healthier choices, while respecting their right to make their own decisions?

Activity _unit7.2.2 Activity 2 The cheese sandwich

Allow about 5 minutes

Jimmy lives by himself. He has help from a support worker to prepare his evening meal. When Jimmy’s parents visit, she tells them Jimmy will only eat cheese sandwiches for dinner. His parents are anxious about this as it is not a healthy diet. But the support worker believes it is Jimmy’s right to choose.

Figure _unit7.2.2 Figure 3 Staff may find themselves balancing different priorities when supporting people

Link: Reports on inequalities in healthcare.

Which of the following might help a support worker resolve this issue while still respecting Jimmy’s right to choose?

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Answer

All but 5 and 8 are actions you could take while respecting Jimmy’s rights to choose.

In this activity you explored some of the issues in making positive lifestyle choices, while respecting people’s rights as adults to make choices. Balancing respect for people’s right to choose with encouragement to make healthy choices will never be easy, and requires empathy and imagination.

In the next section you will explore the quality of healthcare for people with learning disabilities.

3 Healthcare

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

One reason Leah and Jimmy’s parents might be worried about their adult children is that healthcare for people with learning disabilities is often poor.

In recent years, there has been a series of official reports and investigations into healthcare for those with learning disabilities. The outcomes of the reports have revealed some positives, including:

Life expectancy has increased dramatically since c. 1950. Then, people with Downs Syndrome, like Bernie Lee from previous sessions, could not expect to live beyond their fifth birthday. Now 48% of people with Downs live to see their 50th birthday – and Bernie has far surpassed this, reaching 68 as of the time of writing (2019).
Many more children with severe and complex needs are reaching adulthood (Public Health England, 2016).
Free annual health checks with GPs have been offered to adults in England since 2008. Annual health checks have also been available in Wales since 2006 and in Northern Ireland since 2011.
Like other providers of services, GPs and hospitals are legally obliged to make ‘reasonable adjustments’ to ensure that people with learning disabilities get equal access to healthcare.

Despite these positives, there has also been heavy criticism of mainstream healthcare for those with learning disabilities. For example, the 2007 Mencap report Death by Indifference showed some people dying because of poor hospital care, while a government report in 2008 said some NHS care for those with learning disabilities was ‘appalling’. Then, in 2012, Mencap released another report, Death by Indifference: 74 deaths and counting, which concluded that standards were still not being met.

For a summary of the key reports into the inequalities in healthcare from 2001 onwards click on the link below (You should open the link in a new tab by holding down Ctrl (or Cmd on a Mac) when you click on the link.). Note this is optional and you will not be quizzed on the content in this link. You will review the conclusions and recommendations of the reports in the next section.

3.1 The shortcomings of healthcare

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

The conclusions of the many reports into the shortcomings of healthcare for people with learning disabilities echo one another. Their findings include:

poor communication
failure to listen to and learn from family and others who know the person well
failure to adjust systems and communications methods to take account of poor literacy, lack of access to transport and other disadvantages experienced by people with learning disabilities
need for documentation, such as a health passport, to accompany the person as they encounter healthcare
need for more and improved training for all healthcare professionals.

Figure _unit7.3.1 Figure 4 Mencap’s Death by Indifference report (2007) showed that people with learning disabilities were dying early because of poor hospital care

Recommendations to deal with these now well recognised problems include the following measures:

introducing ‘health navigators’, people who have the job of helping someone with very complex needs to ‘navigate’ the health and care system
using liaison nurses in hospitals whose job it is to support other staff when treating someone with a learning disability
the use of health passports explaining the person’s health conditions, their likes and dislikes, and their preferred methods of communication
more and improved training for all healthcare professionals
involving the patient’s family/people who know them well in their care and treatment
making adjustments, such as longer appointment times, phone calls instead of letters, appointments at quiet times, etc. to suit the needs of people with learning disabilities.

Some of these ideas have been translated into legislation, known as ‘reasonable adjustments’, to promote equality of access.

4 Reasonable adjustments

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Like other organisational bodies, health services must by law make ‘reasonable adjustments’ to make sure people with disabilities, including learning disabilities, can access high quality healthcare. In the next activity you will explore what this might actually mean in practice.

Figure _unit7.4.1 Figure 5 Reasonable adjustments are now underpinned by the law

Activity _unit7.4.1 Activity 3 What are reasonable adjustments?

Allow about 20 minutes

The Royal College of Nursing (RCN) has outlined the sort of adjustments that should be made for people with learning disabilities if their disadvantages in accessing good quality healthcare are to be addressed.

Reasonable adjustments can be made to many areas of health services. Services can ensure, for example, that:

buildings, including toilets, are accessible to people with physical disabilities
signposting is clear and easy to follow
information and advice is offered in formats and languages that people can understand
extra time is offered to people who have particular communication needs or difficulty understanding what is being said
alternatives to hospital or clinic attendance are considered for those who have problems in getting to appointments
families and friends of people with disabilities are actively involved, if the person wishes them to be.

(The Royal College of Nursing, 2015)

Now read Jessica’s story below from the Confidential enquiry into premature deaths of people with learning disabilities (Heslop et al., 2013) and then answer the question that follows.

Case study _unit7.4.1 Case study – Jessica

Jessica had surgery for congenital heart disease at the age of four. She had biannual follow-ups from the paediatric congenital heart disease team throughout her childhood. She was expected to be reviewed again by the adult congenital heart disease team three years after moving from paediatric to adult services, but this did not happen. She was later discharged from the clinic as being ‘lost to follow-up’. Jessica had little contact with health services, and did not receive Annual Health Checks from her GP. She subsequently died from complications of her heart disease, and the panel reviewing the circumstances of her death identified the lack of follow-up for her heart disease as being a contributory factor in her premature death.

(Source: Heslop et al., 2013)

What ‘reasonable adjustments’ might have made a difference to Jessica?

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Answer

Taken one by one, no single adjustment listed by the RCN would have been enough by itself to prolong Jessica’s life. Improved communication and a readiness to administer treatment other than in the most routine of ways would have helped.

What also appears to be missing here was anyone to check that what the paediatric team had prescribed was actually happening. A ‘reasonable adjustment’ might have been for the clinic to ask a Learning Disability nurse to visit Jessica to find out why she had not come to clinic, and to understand what might have prevented her going.

At the same time, Jessica’s GP could have taken proactive steps to invite her for an annual check-up, to which she was entitled.

You can see from this example that ‘reasonable adjustments’ have to be more than a tick-box exercise. They require someone with authority to pay attention and take action. In the next section you will look at other examples of unnecessary deaths which help to reinforce this message.

5 Unnecessary deaths

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

A sense of urgency has been lent to the efforts of addressing the healthcare needs of people with learning disabilities by some high-profile cases where young people have needlessly died.

Figure _unit7.5.1 Figure 6 A clearer picture of the numbers of people with learning disabilities who have needlessly died while in hospital is being built

Link: ‘Gross failure’ in man’s care led to death from constipation

In the next activity you will explore the case of Richard Handley, who had Down’s syndrome and suffered lifelong constipation.

Activity _unit7.5.1 Activity 4 The case of Richard Handley

Allow about 30 minutes

Read the article from The Guardian at the link below. Then answer the questions that follow.

How might ‘reasonable adjustments’ have made a difference to Richard?

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What else would need to happen to prevent these ‘gross failings’?

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Answer

The enormity of what happened to Richard makes it hard to easily unpick how it could have been prevented. However, one of the main issues picked up by the series of reports on healthcare was that no single person has an overview of the complex systems and sets of relationships involved in the care of a person with complex impairments and health needs. Families may try to do this, but they lack the knowledge of the interlocking systems, and, crucially, the authority to command action from healthcare professionals.

Families can be immensely helpful. They can sit with the patient, interpret their communication, explain resistance to blood tests or other interventions, and just be a reassurance in an unfamiliar environment. Sometimes their help is welcomed, but sometimes it can be branded as ‘interfering’, as Sheila put it in the scenario in Section 2 of this session.

Health passports can be useful – as long as they are up to date and everyone knows about them and remembers to consult them.

6 When things go well

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Sometimes ‘reasonable adjustments’ can make a huge difference. Read the examples below of how ‘reasonable adjustments’ have benefited William, Margaret and Mary.

William
William was diagnosed with coeliac disease. His dietician found out where he liked to buy his food, and went there to take photos of the foods it was OK for him to eat. She used the photos to prepare a laminated sheet for him to take shopping.
Margaret
Margaret’s GP noticed that she was calmer when her key worker was with her. He asked the receptionist to find out when the key worker was on duty before making the appointment for her Annual Health Check.
Mary
Mary’s learning disability nurse visited her before she went into hospital, to tell her what would happen and find out how she liked to be supported. The nurse then shared this information with the ward staff. She visited Mary during her stay to find out how things were going.

(Source: adapted from Heslop et al., 2013)

Figure _unit7.6.1 Figure 7 Often it’s attention to the small things that can have a big impact on the quality of a person’s healthcare

There is a long way to go before it is possible to be confident that people with learning disabilities are no longer disadvantaged in accessing high quality healthcare. But a start has been made – we know there is a problem and we know what needs to be done.

7 Isolation, loneliness and ill health

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Isolation and loneliness have been identified as particularly acute for people with learning disabilities. Reports, such as those undertaken by Mencap (no date), have consistently said that many people with learning disabilities have few friends or close relationships, and often rely on family or paid staff for companionship. This can affect people’s health and wellbeing.

Ironically, some of the changes made to support independence and choice have made loneliness more acute. Closing the sorts of day centres which Bernie Lee attended for much of her adult life in favour of people joining in mainstream social activities can mean that people do not have regular companionship. Living on your own, with support, is great, but the trade-off can be loneliness. This is what one tenant said to a researcher:

I do get lonely. I don’t want anyone else in the house because it would be another resident and then I’d have to have the staff for them and it wouldn’t be a home and I don’t want that.

(Source: unpublished research project conducted by author, 2011)

Now listen to Cian, who you first met earlier in the course, talk about the impact loneliness, and having nothing to do, had on his health when he was younger.

Download this video clip.Video player: Video 2 >

Video _unit7.7.1 Video 2

Transcript: Video 2

CIAN

I have mental health problems, but they’re just seen as part of my disability. They're not taken seriously as mental health problems, which is a real [BLEEP]. But no, I’m reasonably healthy.

When I was about, in the period when I left college, I was really, really overweight. I was about 25 stone-- or no, about 21 stone or something, I was. Yeah. And it's natural that when you've got nothing to do, you're going to put on weight and eat junk food because what else can you do?

End transcript: Video 2

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Video _unit7.7.1 Video 2

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Did you notice what Cian said about his mental health? That people thought it was just part of his autism. This is known as ‘diagnostic overshadowing’, an assumption that a health problem is caused by the learning disability – when in fact it is nothing to do with it.

7.1 Improving health and wellbeing

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

In the next video, Cian explains how he overcame his mental ill health and overeating.

Download this video clip.Video player: Video 3 >

Video _unit7.7.2 Video 3

Transcript: Video 3

CIAN

I left college with no qualifications whatsoever, with nothing, and it was awful. And then after that, I experienced serious mental health problems. I got very violent and I at one point attacked a friend of mine, which I really regret. But I was in such a bad place. I got very violent there, and yeah, that was really bad.

But five years later, I went to the Royal Central School of Speech and Drama. A course, at Central School, run by Access All Areas, a special course for people with learning disabilities such as autism, cerebral palsy, Down syndrome, Williams syndrome, et cetera. And I did the course and long story short, I am now a freelance actor and it's all because of Access All Areas.

And I really wish to God that I knew about Access All Areas sooner. Because back then, I thought that I would have nothing. And I thought, I'll be lucky if I get a job in a shop stacking shelves. I really felt like I had nothing going for me.

End transcript: Video 3

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Video _unit7.7.2 Video 3

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Cian explained that things changed for him when he discovered Access All Areas, a drama group for people with learning disabilities and autism. It is perhaps a paradox that at a time when inclusion is viewed as so important, organisations specifically for people with learning disabilities and their families are necessary.

Activity _unit7.7.1 Activity 5 Pedal Power an organisation for people with learning disabilities and their families

Allow about 20 minutes

Some people believe that special activities for people with learning disabilities and their families are part of a discredited past, when people with learning disabilities were shut away. Watch this video about Pedal Power, a social activity for people with learning disabilities and their families. Then respond to the poll at the link that follows.

Download this video clip.Video player: Video 4 >

Video _unit7.7.3 Video 4

Transcript: Video 4

[MUSIC PLAYING]

JO ROACH

Pedal Power’s a cycling club for people with learning disabilities. It's just all about freedom, learning to be with other people. They're learning a skill. They improve their cycling.

It's fantastic. But as a spin-off from it, we've got parents cycling, we've got parents chatting to each other. They're supporting each other. They're passing on really useful information. It's a really understanding group because we've all been through it.

End transcript: Video 4

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Link: Specialist organisations

Video _unit7.7.3 Video 4

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Once you have submitted your choice you can then see how others have voted.

Segregated or special services and activities remain controversial, but there is plenty of evidence that in a world where not everyone is equal, organisations and events specifically for people with learning disabilities have an important part to play in promoting a sense of wellbeing and combatting loneliness.

8 This session's quiz

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Well done – you have reached the end of Session 6. You can now check what you’ve learned this session by taking the end-of-session quiz.

Session 6 quiz

Open the quiz in a new tab or window by holding down Ctrl (or Cmd on a Mac) when you click on the link. Return here when you have finished.

9 Summary of Session 6

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

In this session, you have considered issues around health and wellbeing for people with learning disabilities. While a learning disability is not itself an illness, it is often accompanied by health conditions like epilepsy or cerebral palsy. People with learning disabilities are also vulnerable to ill health because of lifestyle issues, such as diet or lack of exercise, and this is exacerbated by poverty, isolation, loneliness and poor education.

To ensure equal treatment, services need to make a special effort to adjust for the needs of people with learning disabilities. A great deal can be done to mitigate the risks people with learning disabilities face, but it requires training and a willingness to involve carers, paid or unpaid, in their care and treatment. The laws are in place for this – the problem is well known, but practice often lags behind.

In this session you explored:

situations where making independent choices may conflict with a healthy diet and lifestyle
changes that can enable people to receive improved healthcare
ongoing weaknesses in delivering good healthcare and how failures have resulted in serious harm and preventable deaths
how health risks can be reduced if well managed
why people with learning disabilities can be vulnerable to loneliness.

You can now go to Session 7.

Want to know more?

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Mencap’s Report on friendship and loneliness is available from this link: https://www.mencap.org.uk/learning-disability-explained/research-and-statistics/friendships
Sara Ryan’s book Justice for Laughing Boy (2018) is an account of the death in an NHS Unit of her son, Connor Sparrowhawk, aged 18, and his family’s quest for justice.
The National Development Team for Inclusion website has resources and information about reasonable adjustments, reports, and other initiatives to address health needs: https://www.ndti.org.uk/ resources/
The most recent research into health inequalities and learning disabilities in the UK was published in 2011: https://webarchive.nationalarchives.gov.uk/ 20160704145749/ http://www.improvinghealthandlives.org.uk/ projects/ particularhealthproblems

Introduction

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Good relationships enrich people’s lives. They help you feel like you belong. Most people value having good relationships as it is important to be able to share your interests, worries, stories and experiences with others who know and understand you. This applies to people with learning disabilities too. However, it is not always easy for people with learning disabilities to develop and sustain the relationships they want.

Download this video clip.Video player: Video 1 >

Video 1

Transcript: Video 1

CHARLENE

No matter what you've got or what disability you've got, you can still have relationships no matter what, you know? Yeah. It will be up and downs, but you will get through it.

CIAN

I find it hard to tell who my real friends are because of my autism.

CHARLENE

I've got proper good, good, good friends.

SHAUN

I have colleagues at work who are also pretty much like my mum and my auntie.

TERRY

We knew each other for three years and we was best friends.

SHAUN

I've recently got back in touch with another friend of mine who's going through a hard time. And I'm helping her out and she's helping me out. So it's more of a supportive role, so that helps.

CIAN

I don't want to be messed around again, but you've got to take chances, you know.

TERRY

My friends are family, I wouldn't give them up from the world.

End transcript: Video 1

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Video 1

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In this session you will explore:

how people with learning disabilities can be involved in caring relationships
the importance of friendship for people with learning disabilities
barriers to people with learning disabilities developing romantic and sexual relationships
how people can be supported to avoid abusive relationships.

1 Caring relationships

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

It is known that people with learning disabilities need support from other people. But what may surprise you is that people with learning disabilities can also be carers, providing support to their friends, partners, parents and children.

Activity _unit8.1.1 Activity 1 Relationships in the institutions

Allow about 10 minutes

Watch this film about Gloria Ferris and Muriel Mussett. Gloria and Muriel met when they both lived in St Lawrence’s institution and their relationship continued when they moved into the community. Afterwards fill in the table below.

Download this video clip.Video player: Video 2 >

Video _unit8.1.1 Video 2

Transcript: Video 2

GLORIA

Hello.

SHIRLEY

Hello, Gloria.

GLORIA

How are you?

SHIRLEY

Can I order your cab?

GLORIA

How are you? Yes, please.

SHIRLEY

Morning, Jen. It's Shirley at Life Care. Can we have a cab for Gloria to go to White Hill? Yeah, that's fine. Thank you. About 10 minutes.

GLORIA

OK.

SHIRLEY

All right?

GLORIA

Yes. Yeah.

NARRATOR

Today, Gloria first has to take a bus and then a taxi to see Muriel, who now lives with others from the hospital in a small specialised unit not accessible by public transport.

GLORIA

Well, it's country, and it's sort of quite-- I'm not saying it's not nice. It is nice. And it's nice for them to be out from the actual hospital. And again, it's a shame it's out of the way of anywhere. She's quite able to understand what you're saying and aware what's being done. I do much the same thing, except I’m more of like a mother, as well as an advocate to her, because I visit her twice weekly. If I could see her every day it would be nice, as well, and do the things that I used to do with her.

That's putting her to bed, and feeding her, washing her, dressing her. But quite often, she’ll help herself a little bit. They see me as an advocate and a friend. I mean, I go around talking to all of them. I know all the ones that are here from the same ward as Muriel-- Moira, Sibile, Helen, most of those from the same ward.

And they're all wheelchair people in the same sort of position that she's in. And I often help them if they need help. I've had experience of lifting and with them pulling their weight.

[LAUGHING]

She's woken up. I quite enjoy being with them. I mean, she's quite enjoying in the way as she is now. She's doing quite well. And I'm the only one that she's got, as well. So it's both ways, isn't it?

End transcript: Video 2

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Video _unit8.1.1 Video 2

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Table _unit8.1.1 Table 1 Gloria and Muriel’s relationship

Terms that Gloria uses to describe her relationship with Muriel	Tasks that Gloria helped Muriel with	Things that made Gloria and Muriel’s relationship difficult after Muriel left the institution
Table 1 Gloria and Muriel’s relationship 1	Table 1 Gloria and Muriel’s relationship 2	Table 1 Gloria and Muriel’s relationship 3

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Discussion

Table _unit8.1.2 Table 1 Gloria and Muriel’s relationship (completed)

Terms that Gloria uses to describe her relationship with Muriel	Tasks that Gloria helped Muriel with	Things that made Gloria and Muriel’s relationship difficult after Muriel left the institution
mother advocate friend	washing feeding dressing	Muriel lives far away the transport links aren’t very good they don’t see each other as often as Gloria would like.

The one term that Gloria doesn’t use to describe her relationship with Muriel is that of ‘carer’. This is despite the fact that Gloria was very involved in Muriel’s care in the institution – and after. You may have been surprised to learn that people like Gloria had caring roles in the institutions. However, it has been argued that institutions were only economically viable because some people with mild or moderate learning disabilities did unpaid work when they lived there.

Watching the video you can see that Gloria didn’t resent taking on this role of ‘carer’ – indeed she was very happy to care for Muriel in this way. But the film also shows that the relationship between them was not only about caring. Gloria says ‘it’s both ways’, suggesting that the two women became good friends. Gloria also talks about being ‘like a mother’ to Muriel, suggesting their relationship was deeply felt.

While most people with learning disabilities were very happy about being moved into the community, it did present difficulties for friendships. Gloria and Muriel spent much less time together after leaving St Lawrence’s. Very sadly, other people completely lost touch with their friends after leaving the institutions.

1.1 Caring in intimate relationships

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Like others in the population, some people with learning disabilities find themselves becoming a carer for their partner.

Activity _unit8.1.2 Activity 2 Shifting roles

Allow about 10 minutes

Watch this short video about Charlene and Terry. They are in a romantic relationship but Charlene is also Terry’s carer. Then answer the questions below.

Download this video clip.Video player: Video 3 >

Video _unit8.1.2 Video 3

Transcript: Video 3

TERRY

When my mum-- she's been ill, recently. So Char had to take on the brunt of my care. So that's been hard for us, hasn’t it?

CHARLENE

And also, I hope you don't mind bringing this up, as well. Terry's dad passed away. What was it? Sorry. I know that's hard for you. But--

TERRY

A year ago.

CHARLENE

A year ago-- and he would normally-- did all the support for Terry. And he used to drive. So he would take us to where we got to get to.

And now, God rest his soul. Rest in peace. I've got that full responsibility, now, to make sure if Terry's got to go somewhere, I've got to make sure that Terry's there on time, making sure that she's ready and stuff, and make sure she's OK and text stuff. So, yeah. So it's like I've got the full responsibility that he had. Yeah.

End transcript: Video 3

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Video _unit8.1.2 Video 3

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Why has Charlene taken on more responsibility for Terry’s care?

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What are some of the things that Charlene supports Terry with?

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Have the videos about Charlene and Terry (Video 3) and Gloria and Muriel (Video 2) in this section challenged your views about the types of relationships that people with learning disabilities have? The boundaries in relationships are often blurred: a romantic relationship may cross into a caring relationship; a caring relationship may become a deep and long-lasting friendship. This applies to everyone, not just people with learning disabilities.

This section has shown that while many people with learning disabilities need support, some also provide care and support for others. However, society rarely acknowledges when people with learning disabilities are caring for others. This means that people with learning disabilities can lose out on support or resources that they are entitled to as carers.

1.2 Parents with learning disabilities

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Eugenics (see Session 2) had a big influence on how people with learning disabilities were treated in the past. Fears about people with learning disabilities having children led to people being segregated in institutions, and sometimes sterilised without their consent (Tilley et al., 2012).

Figure _unit8.1.1 Figure 1 People with learning disabilities can, and do, parent

Link: Maggi and David’s story

Today, people with learning disabilities can and do have children. But they are often discouraged from doing so. People with learning disabilities are also over-represented in the Child Protection system in many countries (Tarleton, 2015).

People with learning disabilities face a lot of barriers to being the best parents they can, often based on little more than other people’s negative expectations about their abilities. But research has also shown that with tailored support in place, people with learning disabilities can and do parent effectively (Tarleton, 2015). While children’s needs and welfare are paramount, ‘parenting with support’ can lead to positive benefits for both parents with learning disabilities and their children.

Activity _unit8.1.3 Activity 3 A parenting story

Allow about 10 minutes

Read this real life case study about Maggi and David in the link below then answer the question that follows. (You should open the link in a new tab by holding down Ctrl (or Cmd on a Mac) when you click on the link.)

Select from the list below the factors that helped Maggi and David keep their family together after Anne was born:

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This interview was recorded in 2009. Ten years on, in 2019, Maggi was interviewed again. She revealed that Anne is now approaching secondary school age and she and David have another child, Edward, who is 7. The family have moved to a new home. Maggi has also recently been diagnosed with dyspraxia, a developmental disorder that affects physical co-ordination. She no longer considers herself to have a learning disability because recent assessments have shown her IQ is higher than professionals previously understood. Maggie thinks a lot of the difficulties she experienced in her earlier life were due to her own upbringing and her undiagnosed dyspraxia.

Looking back to when Anne was a baby, Maggi can appreciate she received some useful support, but also thinks that being labelled 'learning disabled' led a lot of professionals to make unfair assumptions about what she could and couldn't do. David does have learning disabilities, and Maggi supports him when he needs help. She also said she thinks that parents with any disability need more understanding and her message to professionals is: ‘Do not judge until you’ve walked a mile in someone’s shoes.’

2 Making friends

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Friendships are good for everyone. As you learned in Session 6, friendships help to reduce loneliness and isolation. Reducing loneliness can improve people’s physical and mental wellbeing, and can even lead to people living longer.

Having friends can also help people with learning disabilities feel more confident and be more independent, so it’s vitally important. But does this reflect what is happening in people’s lives?

Activity _unit8.2.1 Activity 4 Experiences of friendships

Allow about 10 minutes

Watch this video of Cian, Charlene and Terry talking about their friends. As you watch, note down anything that struck you as interesting or important in the video in the text box below.

Download this video clip.Video player: Video 4 >

Video _unit8.2.1 Video 4

Transcript: Video 4

CIAN

I had a very difficult time making friends when I was young, with both autistic people and non-autistic people. And I think, to a certain extent, I do still have trouble making friends with people.

CHARLENE

Yeah. Now, friends yeah I’ve got proper, good, good, good friends, but the thing is not time to see them that often-- very busy and--

CIAN

I find it hard to tell who my real friends are because of my autism. That's a bit of a thing I have. Although, I do know that I have good friends, but I just don't know where I am with people. That's a bit of a trouble I have, really. Yeah.

TERRY

I class everyone including the teachers as part of my family because they have supported me through a lot of rubbish times, throughout the period that I've been with Access. So, yeah. My friends are my family, I wouldn't give them up for the world.

End transcript: Video 4

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Video _unit8.2.1 Video 4

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Answer

You may have noted that Cian said he found it hard to make friends at school. He also said that sometimes his autism can make it more difficult for him to know who his ‘real friends’ are. Charlene said she has lots of good friends these days, but it can be hard finding the time to see them. Terry said that he had made good friends at Access all Areas. This includes other actors with learning disabilities, as well as the teachers. He said his friends were like family.

Video 4 shows that people make friends in a range of different contexts. It is not always easy for people with learning disabilities to make and keep friends, however. Practical issues like needing to travel to see your friends can also be a barrier for some.

It is also important that those who provide support to people with learning disabilities recognise the importance of friendships. This isn’t always the case and sometimes support workers don’t focus on what is needed to help people to make and sustain friendships.

2.1 Supporting people to have friends

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Figure 2 shows Johanna de Haas with her friends Gloria and Steph. You may recognise Gloria from Video 2 earlier in this session. Gloria and Johanna met at an Open University conference a few years ago and struck up a long-lasting friendship.

Figure _unit8.2.1 Figure 2 Johanna (centre) with her good friends Gloria (left) and Steph (right)

Johanna’s family provided lots of opportunities for her to develop and maintain relationships. Here is Johanna’s mother Catherine reflecting on Johanna’s life:

Everyone has something to give whether they have disabilities or not. Everyone has something to gain from spending time with other people. I have been very privileged in my lifetime. I had a daughter with profound and complex learning disabilities. She never learned to talk, but she could make deep connections with other people. I learned so much from watching her with her friends. Like anybody else she made friends by participating in activities that were enjoyable such as singing together. She maintained her friends just like other people by doing things like going for a coffee or a meal. Towards the end of her life she could not eat, but she still enjoyed being in a cafe with other people. She loved to hear gossip, but has taken many secrets to her grave. She had a winning smile and a wicked sense of humour. Many people felt more comfortable with themselves after spending time in her company.

Catherine’s words show that all people with learning disabilities can have fulfilling friendships. What Catherine describes here is not complicated – going for a coffee, a meal, or joining in a choir. Hanging out together. But Johanna needed someone to help facilitate these things for her. For many people with learning disabilities, the biggest barrier they face is not having the support they need to get out and about with their friends.

3 Romantic relationships

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Research has shown that many people with learning disabilities want to have romantic and sexual relationships. People’s right to do so is supported by law and policy. And yet it can be incredibly difficult for people to develop and sustain the types of loving relationships they want.

Activity _unit8.3.1 Activity 5 Living together

Allow about 5 minutes

70% of the general adult population live as a couple. What percentage of people with learning disabilities do you think live as a couple?

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Earlier in this session you heard from Terry and Charlene who are in a long-term relationship. In the next video you will hear them talk about why they think their relationship has been successful and lasted for a decade.

Download this video clip.Video player: Video 5 >

Video _unit8.3.1 Video 5

Transcript: Video 5

CHARLENE

We do have our moments.

TERRY

Yeah.

CHARLENE

We do have little arguments, yeah. Yeah, to me, it is challenging. But to me, into my eyes, it's like we're showing people that we can cope, you know? It's like, no matter what you've got, or what disability you've got, you can still have relationships no matter what, you know? Yeah, it will be up and downs, but you will get through it.

TERRY

I think we got it pretty easy, cause we have got the same job. We work for the same company. We've got the same things. So it's pretty easy to have time to do all that stuff and work at the same time. And about our disabilities, Char helps me a lot with my physical difficulties. You'll help her with the things she don't understand.

CHARLENE

Yeah, you try and make a word that I don't understand. You try and make it so that I can understand, so it makes sense. Because if Terry says something, I might go, huh? Like, give that-- what? I actually tell Terry, can you explain it in a way that I can understand?

End transcript: Video 5

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Video _unit8.3.1 Video 5

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Charlene says they want to show people that they can cope, and that she and Terry can manage the usual ups and downs of a relationship. Although Charlene has taken on more responsibility for Terry’s physical care of late, it’s clear that Terry supports Charlene too. Terry suggests their relationship has been strengthened by the fact that they have many shared interests and friends. They also work for the same company, which means they can spend a lot of time together.

3.1 Barriers to loving relationships

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Charlene and Terry’s relationship shows that people with learning disabilities can and do have positive, supportive and long-term relationships. Lots of people with learning disabilities want to date, or have sex, or be in a relationship, but the evidence suggests that it is difficult for them to achieve this.

Activity _unit8.3.2 Activity 6 What makes it difficult to find love

Allow about 5 minutes

Can you think of two or more reasons why people with learning disabilities find it hard to develop romantic or sexual relationships?

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Answer

One person answering this question said:

I think attitudes are part of the problem. I’m not sure that everyone thinks people with learning disabilities are capable of being in a romantic relationship, or the idea of it makes them uncomfortable.
People with learning disabilities don’t get many opportunities to meet potential boyfriends or girlfriends. People are socially isolated. That’s a big problem.
Services and families might feel nervous about this. Maybe they haven’t had training or are worried about legal issues.
Perhaps there are fears that it might result in pregnancy?

A report by the National Development Team for Inclusion (NDTi) (Harflett and Turner, 2016) highlighted some of the key barriers to people with learning disabilities enjoying romantic or sexual relationships. These are shown in Slideshow 1.

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Online activity _unit8.3.1 Slideshow 1

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Now watch Video 6 from the Tizard Centre at the University of Kent. Their research explored what support people with learning disabilities need in order to have loving relationships. In this video you will listen to people involved in the project talk about what they found out.

Download this video clip.Video player: Video 6 >

Video _unit8.3.2 Video 6

Transcript: Video 6

WOMAN 1

Initially, we had to give a lot of support for Daniel and Lily to help them maintain their relationship and develop it further. It would be simply helping to arrange a date, come up with ideas for where to go on dates, and simple things such as driving them there.

NARRATOR

Many people told us that transport was a big problem. Not being able to travel around easily, many people couldn't keep relationships going.

WOMAN 2

It would be difficult to get a boyfriend because he lived too far away.

WOMAN 3

I can't use public transport very easily at all. It's easier now John's got a car. But when we first met, it was very hard.

JOHN

I have travelled on the trains and the buses as well to see Lara as well. And that took a lot of time, that did.

WOMAN 3

And a lot of money.

CHARLOTTE

One more from Manchester and one from from Nottingham. And it's a bit scary getting there and getting back.

WOMAN

Transport was a big issue. So people wanted help to be able to get out to places, to social events or to go on dates. And they often found that really difficult if there wasn't anybody who could help with transport. There were some practical issues about keeping in touch with people. And we heard of people who perhaps had met somebody that they liked and wanted to go out with. But because they didn't have support to kind of maintain that relationship, things just fizzled out.

End transcript: Video 6

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Video _unit8.3.2 Video 6

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As you heard, the support people need to have relationships is often quite simple – for example, help to arrange a date; transport to get to places; and support to keep in touch. Unfortunately, lots of people with learning disabilities are not getting access to such support.

3.2 The importance of loving relationships

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Why is it important for people to have a loving relationship? In the next activity, you will hear from some people with learning disabilities about why it matters to them.

Activity _unit8.3.3 Activity 7 Valentine’s day

Allow about 10 minutes

Watch this video about romantic relationships by self-advocacy group My Life My Choice then answer the questions that follow.

Download this video clip.Video player: Video 7 >

Video _unit8.3.3 Video 7

Skip transcript: Video 7

Transcript: Video 7

[MUSIC PLAYING]

WOMAN 1

Relationships make you feel happy. A relationship can be a friend, or a family member, or a boyfriend, or a girlfriend.

WOMAN 2

Or a husband and wife, or whatever makes you happy.

WOMAN 1

I never thought I'd get married, but now I've been married 20 years and I'm very happy.

WOMAN 2

Relationships make you feel happy.

WOMAN 1

Positive.

WOMAN 2

And part of something.

WOMAN 1

It's nice to have someone there to support me or support them.

WOMAN 2

And it's nice to have somebody that shares the same interest as you and to go out for walks and do nice things. It's nice to have a bit of company and somebody to the look after you.

WOMAN 1

It's nice to have someone there to cook your meals.

WOMAN 2

If you're lucky.

WOMAN 1

Being on your own can make you really sad.

WOMAN 2

Nobody to share your life with.

WOMAN 1

Don't belong.

WOMAN 2

Lonely.

WOMAN 1

Only three percent of people with a learning disability live with a partner or in a relationship.

WOMAN 2

People with learning disabilities are just like everybody else.

WOMAN 1

And they should have a right to have a relationship like anyone else.

WOMAN 2

We have been looking at relationships for people with learning disabilities.

WOMAN 1

Yes!

WOMAN 1

We have worked with the NDTi to look at relationships. We work with a national development team for inclusion.

WOMAN 2

The NDTi.

[CHEERING]

WOMAN 1

We spoke to over 60 people from Oxfordshire that have a learning disability.

WOMAN 1

They have spoken to people who have disabilities, families, carers, and support staff.

WOMAN 2

And we have spoken to commissioners and care providers.

WOMAN 1

To have a romantic relationship.

WOMAN 2

We have found out that some people have had a relationship and we were happy about that.

WOMAN 1

I tell people there's a lot of people still out there that don't have a relationship.

WOMAN 2

We have found lots of barriers.

WOMAN 1

And lots of things that stop people from having a relationship.

WOMAN 1

We are writing up our research.

WOMAN 2

And we will share it with you when we've finished.

WOMAN 2

All you need is love. [VOCALISING]

ALL

All you need is love.

WOMAN

Love.

End transcript: Video 7

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Video _unit8.3.3 Video 7

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According to the people in the film, what are the benefits of being in a relationship?

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Answer

According to the people in the film, the benefits of being in a romantic relationship include making you feel happy and wanted ‘and a part of something’. Relationships also help you to feel supported. It’s about having a companion and having someone to do nice things with, and someone to share your interests with.

What do they say are the downsides to being on your own?

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Answer

The people in the film said that not being in a relationship can make you sad. It can make you feel lonely.

People with learning disabilities have a right to family life. They want their sexuality and sexual lives to be respected. It’s important that people with learning disabilities get equal access to good sex education and relationship advice. But it’s also important that the people who support them access good guidance and training too.

4 Managing the risks – avoiding harmful relationships

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

When asked what really matters in their lives, people with learning disabilities say that love, relationships and having friends are all important. But people with learning disabilities are sometimes prevented from developing relationships because of fears about their safety. Family and support workers may be concerned that the person is vulnerable and may worry that a relationship puts them at risk. Sometimes family members feel embarrassed talking to people about sex and relationships; at times staff may worry that they will be blamed if things go wrong (Choice Support, 2019).

Listen to this short clip of support workers discussing some of the challenges of helping people to be in loving relationships.

Download this video clip.Video player: Video 8 >

Video _unit8.4.1 Video 8

Transcript: Video 8

[MUSIC PLAYING]

KATIE WEBB

I think there needs to be more training for staff because staff are worried, aren't they? They don't know where the boundaries are--

PHOBE TATUM

We don't know where we stand, yeah.

KATIE WEBB

--with capacity and with safeguarding.

CLARE BATES

Do you think some of the people you work with are lonely?

PHOBE TATUM

Yes.

KATIE WEBB

Yeah. Very lonely, yeah. Yeah, it's a big issue, I think. People want relationships, but they don't know how to go about it or where to find somebody. They feel maybe they're not worthy of a relationship.

CLARE BATES

So one of the things that comes up as a theme-- nightclubs were often places people said that they met potential partners.

KATIE WEBB

Unless they know other people from other places, then they tend to just stick together.

PHOBE TATUM

Yeah.

CLARE BATES

Yeah.

[INTERPOSING VOICES]

KATIE WEBB

Yeah, so I think they need more staff support. Maybe staff need to network more so they know each other. So then they find it easier to go up and introduce to different people.

CLARE BATES

What do you think would be the most important things to train staff on?

PHOBE TATUM

Again, where we stand legally--

[INTERPOSING VOICES]

AMY CLIFFORD

Yeah.

KATIE WEBB

Yeah.

AMY CLIFFORD

Yeah, because it takes away, like I say, the anxiety of, am I doing my job properly or am I potentially--

PHOBE TATUM

Am I putting this person at risk?

KATIE WEBB

Yeah.

PHOBE TATUM

Yeah. Is it going to come back on me, as well? Because that really worries the staff.

[INTERPOSING VOICES]

AMY CLIFFORD

Yeah. It's almost taboo, isn't it, to talk about it?

[INTERPOSING VOICES]

AMY CLIFFORD

I mean, it's true because certain things might make certain people uncomfortable. So just normalising it and making it a more comfortable topic for staff to talk about because--

PHOBE TATUM

I think, yeah, staff training might make the older staff as well-- not necessarily just the older staff, but just the people who are slightly less comfortable with talking about sex, Give them more of an idea of actually where they stand and where the people we support are with it.

KATIE WEBB

Yeah, and things that you can say, and things that you can't say, and I suppose, putting yourself in that person's shoes and thinking how you'd feel in that situation.

PHOBE TATUM

Yeah, and maybe reminding staff that just because they might have a problem with it doesn't mean that can affect how they are supporting the person.

AMY CLIFFORD

Yeah, it's differentiating your opinion versus what you need to be doing within your profession that's--

[INTERPOSING VOICES]

AMY CLIFFORD

And I think that will come from training.

AMY CLIFFORD

Yeah.

PHOBE TATUM

Yeah.

KATIE WEBB

Yeah.

AMY CLIFFORD

Yeah, I think the important thing to remember is that we are here to support them, not control them.

KATIE WEBB

Yeah.

PHOBE TATUM

Yeah, I think that's where there’s little bit of confusion, isn’t there?

AMY CLIFFORD

Yeah, you need to keep reminding we're here to support them and what they want as an individual.

CLARE BATES

Have you had anyone go on dates with anyone from-- or meet anyone off the internet here? Because that was something people worried about, people meeting people off the internet.

PHOBE TATUM

I don’t think we have, have we?

KATIE WEBB

No. Another service I work at, there's a lady there. She goes on Facebook a lot. And she will arrange to meet people that she's spoken to on Facebook, which is a bit scary because obviously, she doesn't know who they are or anything.

So we've tried dating sites with her, but it's really difficult to find one that's aimed towards her disabilities, especially in this area. There doesn't seem to be anything, really. We've had a good look, haven’t we?

CLARE BATES

So what do you think would be helpful in this area?

KATIE WEBB

We could do with a specialist dating agency. I keep saying it.

PHOBE TATUM

Yeah.

KATIE WEBB

Yeah, to help people connect and meet.

CLARE BATES

Do you think people would use one?

PHOBE TATUM

Yeah.

KATIE WEBB

Yeah. I think they would, yeah.

End transcript: Video 8

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Video _unit8.4.1 Video 8

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One support worker talked about ‘normalising’ the conversation about people with learning disabilities being in relationships. Another spoke of thinking about how it would feel to be in the shoes of the person with learning disabilities. One support worker emphasised that their job was about support and not control. They all identified the need for better training to help support workers understand their role when it comes to relationships.

4.1 Hate and mate crime

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

It is understandable that staff and families have concerns about relationships for people with learning disabilities particularly because people with learning disabilities experience higher levels of ‘hate crime’ and ‘mate crime’ than the general population.

Figure _unit8.4.1 Figure 3 People with learning disabilities are more at risk of hate and mate crime than others

Box _unit8.4.1 Box 1 Defining hate crime and mate crime

HATE CRIME: This is when people are targeted purely because of their learning disability.

MATE CRIME: This is when people are abused and exploited by someone they know. This might include emotional, physical or financial abuse. Sometimes this has tragic consequences – for example, the case of Gemma Hayter, who was murdered by people she considered to be her friends (Day, 2019).

Research is also beginning to reveal the severity and frequency of domestic violence that some women with learning disabilities experience (McCarthy et al., 2017). These are very serious issues. Support workers view their role as ‘a juggling act’, trying to strike the right balance between helping people to have good relationships, and protecting them from bad ones (Maguire et al., 2019).

4.2 Safeguarding

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Keeping people safe – sometimes described as ‘safeguarding’ – is an important part of a professional’s job. Parents of people with learning disabilities also report the dilemmas they face in supporting their adult children to take risks, while wanting to protect them from harm.

It is a difficult balancing act. Under the law, people with learning disabilities in the UK can make ‘unwise decisions’ if they have capacity (Scotland. Adults with Incapacity (Scotland) Act 2000; England and Wales. Mental Capacity Act (England, Wales), 2005; Northern Ireland. Mental Capacity Act (Northern Ireland) 2016). This can include decisions about relationships. But if someone supporting a person with learning disabilities is concerned that the relationship is putting the individual in danger, how can this dilemma then be resolved?

Figure _unit8.4.2 Figure 4 Empowering people while keeping them safe can be a difficult balancing act

The Local Government Association has developed a policy called ‘Making Safeguarding Personal’ (Lawson, 2017). This is about supporting people with learning disabilities to take positive risks, while safeguarding their own wellbeing, wherever possible. It doesn't mean the risk of abuse goes away, but it is an approach that is based upon human rights and focuses on empowering people to make informed decisions.

Activity _unit8.4.1 Activity 8 Practical steps to manage risk

Allow about 10 minutes

Can you think of at least three ways in which people with learning disabilities can be supported to take positive risks in their relationships?

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Answer

Here are some ideas you may have come up with:

Helping people to recognise their right to be safe
Helping people to understand when a relationship might be abusive
Making sure people with learning disabilities know who to speak to if they have concerns about a relationship (for example, a trusted supporter or advocate)
Giving people information about where they can go for help, if they need it
Providing people with clear and accessible information about sex and relationships
Providing sex and relationships training to supporters, including staff and family.

Loving relationships are important to most people. People with learning disabilities have the same rights as others to be in relationships. But family members, supporters and professionals must also be alert to when people are at risk of abuse. It is important that people with learning disabilities are given the support, information and advice they need to make informed decisions about their relationships.

5 This session’s quiz

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Well done – you have reached the end of Session 7. You can now check what you’ve learned this session by taking the end-of-session quiz.

Session 7 quiz

Open the quiz in a new tab or window by holding down Ctrl (or Cmd on a Mac) when you click on the link. Return here when you have finished.

6 Summary of Session 7

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Relationships matter to people with learning disabilities. Good relationships help people to feel valued, connected, happy and healthy. People with learning disabilities sometimes need extra support to enable them to develop and keep good relationships. They may also need support to help them to avoid relationships that are harmful.

In this session you explored:

how people with learning disabilities can be involved in caring relationships
the importance of friendship for people with learning disabilities
barriers to people with learning disabilities developing romantic and sexual relationships
how people can be supported to avoid abusive relationships.

In the next and final session of this course, you will consider what is needed to help more people with learning disabilities feel like they belong in society.

You can now go to Session 8.

Want to know more?

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Relationships, Sex and Sexuality, Easy Read Guide, by the Brandon Trust: https://www.brandontrust.org/ old_media/ 313124/ brandon-trust-easy-read-relationships-sex-and-sexuality.pdf
Mencap provide information about hate and mate crime: https://www.mencap.org.uk/ advice-and-support/ bullying/ mate-and-hate-crime
Working Together with Parents Network is a free network for professionals working with parents with learning disabilities and their children. The network provides professionals from a wide variety of backgrounds with up-to-date information on policy and practice as well as access to support from a regional group and email discussions. There are 4 regional practitioner networks England and national networks in Wales and Scotland: http://www.bristol.ac.uk/ sps/ wtpn
The Supported Loving Project provides information from people with learning disabilities, their families and practitioners on how to support people to experience positive relationships: https://www.choicesupport.org.uk/ about-us/ what-we-do/ supported-loving
The Love Project (Tizard Centre, University of Kent) made a film entitled Love is a Wonderful Feeling based on their research about the support people with learning disabilities need to find loving relationships: https://vimeo.com/ 332887161. They also made a film about dating agencies for people with learning disabilities, entitled Making Connections, Building Confidence: https://vimeo.com/ 336573029

Introduction

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Download this video clip.Video player: Video 1 >

Video 1

Transcript: Video 1

CIAN

People say, oh, yes, yes, you have the same rights as everyone else, but I kind of feel like, come on, do we really?

SHAUN

I'm someone that speaks up for my own rights by myself.

CIAN

A lot of people in society treat learning-disabled people as if they're second or third-class citizens.

PHIL

There was no question of a school place. And this is one of the first battles that we had to fight.

End transcript: Video 1

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Video 1

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The closure of the last of the institutions in the UK in 2009 was supposed to herald a new era for people with learning disabilities. The vision was that people would live ordinary lives – in the community – along with everyone else.

In Session 2 you learned about how the large institutions were finally closed. You heard Mabel Cooper saying that people should never have to go back into such places. And you learned how disabled activists were talking about the social model of disability, which led to a much greater focus on disabled people’s rights.

But people with learning disabilities, their families and those who support them, are not always aware of their rights. Public sector bodies, services, organisations and companies might not take people’s rights seriously. In the worst cases, people’s rights are ignored or even violated. One of the key challenges is making sure there is a workforce that can support people’s rights and enable them to feel like they belong.

In this session you will explore:

why it has proved so hard for people with learning disabilities to have their rights upheld
the role of self-advocacy and family advocacy in helping people to understand their rights and get their voices heard
the role of the workforce in helping people to uphold their rights.

1 Upholding people’s rights

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

People with learning disabilities are entitled to the same rights and freedoms as everyone else in society. As you learned in Session 1, this is enshrined in law across a number of countries – for example, the UK Human Rights Act 1998 and the UK Equality Act 2010. It is also backed up by an important international agreement called the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). But does this reflect the reality of people’s day-to-day lives?

Activity _unit9.1.1 Activity 1 Experiences of rights

Allow about 10 minutes

Watch this video of people with learning disabilities talking about rights then answer the questions that follow.

Download this video clip.Video player: Video 2 >

Video _unit9.1.1 Video 2

Transcript: Video 2

SHAUN

If there are any rights denied to me, I would say it’s mostly employment rights and housing rights, due to the fact that there is no help there for employment or housing.

CHARLENE

We worry because we're too scared to ask for help because we don't know if that person knows the answer to give to us.

TERRY

Not stressing people out with all these forms and red tape. Or if your disability will get better, would you be able to work or will you still be on benefits?

CIAN

I think people with learning difficulties should be able to have as much power as anyone else.

SHAUN

I believe that people should have the right, but they don't because the social inclusion does not allow it because the reason why social inclusion doesn’t allow it is because you've got government, you've got education. There's a lot of barriers that are in the way, a lot of hurdles, and it's just something that we're trying to get equal rights for.

CIAN

The right to live in dignity, people often look at me and can tell that I'm different and just make a really rude comment to me.

SHAUN

Go to your Citizens Advice Bureau and they'll help you out, and just try and kick some behind.

End transcript: Video 2

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Video _unit9.1.1 Video 2

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Click the link below to answer the poll on rights.
Link: Rights
Once you have submitted your choice you can then see how others have voted.
Make a note of some of the things that stop people’s rights being upheld, according to the people in the video.

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Answer

Some of the issues you may have noted are:

there is not enough support or help available
prejudice and stigma
systems and processes that make people feel stressed
people with learning disabilities being afraid to ask for help.

Video 2 showed that there are a number of barriers that stop people with learning disabilities exercising their rights. In the next section, you will read about the devastating impact this can have on people’s lives.

1.1 Assessment and treatment units: the new institutions?

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

In 2018, the Rightful Lives online exhibition was launched in the UK, arguing that the rights of many people with learning disabilities were not being upheld. This included people who live in Assessment and Treatment Units (ATUs) or private facilities where people are sometimes locked away for years, with no say about what happens to them.

ATUs were brought to public attention in 2011 by a BBC Panorama programme that exposed the abuse happening in the Winterbourne View private hospital. This led to six members of staff going to prison, in recognition of the seriousness of their offences. The government then set up the Transforming Care programme to get people out of ATUs. But at the last count (2018) there were still over 2,300 people living in such units.

In 2019, Panorama broadcast a second programme which showed disturbingly similar abuse happening in another ATU – Whorlton Hall – eight years later.

The lack of suitable community-based services means that even when people are discharged, they often find themselves back in these private hospitals within a matter of weeks or months. On a range of counts, the situation facing many people with learning disabilities and autism in these units represents a fundamental breach of human rights.

Activity _unit9.1.2 Activity 2 Eden’s story

Allow about 10 minutes

Watch this video about Eden, who has autism and mild learning disabilities. After you have finished watching, note down your immediate reaction to the video.

Download this video clip.Video player: Video 3 >

Video _unit9.1.2 Video 3

Transcript: Video 3

NARRATOR

This is Eden's story. Eden has autism and mild learning disabilities. Eden's early years were full of failure. He was failed, moved from school to school where his needs were consistently not met, despite the best efforts of some teachers, and where he was bullied. He was medicated from the age of eight, thus starting a trend that was to haunt him all his life.

Once he got to secondary school age, Eden was left hanging with the promise of a school place for two years. Yet even when a place was found, it turned out to be unsuitable. During all this time, Eden was stuck at home without the education that was his right. As time went by, the indecision and instability dragged on. Educational opportunities were found, but not explored. Or, yet again, were just not right for Eden.

He was moved from pillar to post. But there never seemed to be any learning at all. Instead, there was very little understanding of Eden's autism. And his anxiety level spiralled. Sometimes Eden was drugged and bruised.

Eventually, he spent six months in a specialist hospital in Birmingham, where he got on well. However, the recommendations made on discharge for his care were not met. And so the cycle soon started up again.

All this was so stressful for the family. His mum's health suffered. And Eden's siblings were all affected. Yet, when he was at home his mum tried to help him with music, dancing, swimming, cooking, and other activities that he loved.

She says, all I ever wanted was my son to have a school and one that knew autism. Sometimes I regret ever asking for help, as I feel his life was taken away, and he has been punished for having autism. He has been failed all his life by professionals that I thought were meant to help. I have always been there. So he trusts me. But it is an existence. It is not a life. It's heartbreaking.

The years of failure took their toll, and eventually Eden was detained under the Mental Health Act at the age of 17. His life was about to get even worse. Eden's first hospital was a medium secure forensic unit. Yet, Eden was not a criminal. He had no forensic history. He was kept in long term segregation for a lot of the time, as he was picked on by other patients. He had no fresh air, no exercise. And he gained 16 stone in weight.

He was meant to be moved shortly after he was detained, as it was obviously the wrong place for him. But he was left there for over five years. Nothing was done to address his autism and learning disabilities and the anxiety that accompanied them. The answer to his distress was simply to increase his medication. His behaviour, understandably, deteriorated, and he ended up on a criminal section.

None of it was his fault. His mother states, he was locked away in a room with no toilet or access to one. It was horrendous. The CQC didn't help. I thought he would end up dying in that room with all the antipsychotic meds on him. Just meals taken in. We had long periods of good behaviour from him. But they kept resectioning him on a 37. It was easy for them to just keep him there.

At the age of 23, Eden was moved to another hospital, this time in Norfolk, hundreds of miles from home and in a very isolated location. Again, promises were made that it would be for a short time. Again, promises were not kept. He was kept isolated and fed food through a hatch. The medication regime continued. And there was no support towards acquiring any basic skills. Family had to travel a 13 hour round trip to visit him. But they steadfastly carried on, visiting every week.

Finally, after a huge battle, Eden's discharge was agreed. He was coming home to London to his own house with his own care team. However, effective transition planning was impossible due to the distances involved. There was no provision for local health and social services support and no crisis planning. Eden did come home. And he did really well at first. He was able to visit the family home and start to have a proper life.

Yet, the old mistakes were made again. Goalposts were moved. Promises not kept. And Eden's anxieties returned. He was recalled to hospital. And he is still there. They said it would just be for a week. But months have gone by now.

Eden doesn't deserve any of this. He is a lovely man with a caring nature. It is about time he was given the chance of a proper life. Bring Eden home.

End transcript: Video 3

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Video _unit9.1.2 Video 3

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Answer

One person who watched this video said:

I was utterly shocked by what Eden and his family have been through. How can this be happening to people in 21st-century Britain? Mistakes being made over and over again. No one listening to Eden and his family. The fact that Eden was moved so far from home, and then moved back without proper support in place. And the conditions in the units that his mum describes sound inhumane.

Complete the drag and drop activity below to identify the breaches of Eden’s human rights that were described in the film:

Interactive content appears here. Please visit the website to use it

You may have found it shocking and distressing to hear about Eden’s experiences. Sadly, his experience is not unique and there are many other people in similar situations. You can find out more on the Rightful Lives website.

In the next section you will explore how people with learning disabilities have learned to speak up for themselves and fight for their rights.

2 Self-advocacy and getting to know your rights

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Exercising your rights is not always easy, especially for people with learning disabilities. This is because information about people’s rights is not always made available to them in ways that are accessible. Sometimes information about rights is deliberately withheld from people to stop them asking difficult questions, or challenging things.

To exercise your rights, two things need to happen:

you need to know what your rights are
you need to feel confident or empowered to assert your rights.

Having the knowledge and confidence to talk about rights can be difficult for people with learning disabilities. This is where self-advocacy comes in. Self-advocacy is about speaking up for yourself. It is also about people with learning disabilities coming together to have more power and to make changes.

Activity _unit9.2.1 Activity 3 The beginnings of self-advocacy

Allow about 10 minutes

Watch this video to learn more about how self-advocacy started and what it means to people with learning disabilities, then answer the questions below.

Download this video clip.Video player: Video 4 >

Video _unit9.2.1 Video 4

Transcript: Video 4

MAN

1972, the Union of Physically Impaired Against Segregation was formed by Paul Hunt, a disabled man who had developed his ideas whilst living in an institution. He and others had been struggling with the authorities of the rights of disabled people to control their own lives. UPIAS are recognised as the initial seed which began the social model of disability when in 1975, they stated--

NARRATOR

"In our view, it is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society."

[MUSIC PLAYING]

MAN

These new ideas were empowering and challenging to the existing medical model. The social model encouraged disabled people to speak up for themselves and campaign for greater inclusion and equal rights. In America at this time, the People First self-advocacy movement was growing stronger. And in 1984, they held an international conference, bringing together advocates from around the world. Attending the conference was a young impassioned Englishman who was ready to bring these new ideas of self-advocacy back to the UK.

GARY BOURLET

It was the first ever People First international conference. And that was in Washington State. And I was astounded by how much confidence people with learning disabilities could speak publicly. And I wanted to be like them. That's what I wanted to do.

And I brought the idea of setting up a People First back in London. Writing over 400 letters, handwritten, four pages long, spending my own postage money out of my own benefits, and instead of actually putting my name signing off-- because I wasn't so confident to sign it off, I put John Hersov's name on there instead.

JOHN HERSOV

A group of us went from London and Essex to America in 1984 to this conference. We were brought together by the campaign for mentally handicapped people and Mencap. People from the Mencap participation forum, including Gary Bourlet, who's remained a fervent self advocate all these years.

GARY BOURLET

It was very tough times as well because even the parents and carers were sort of not happy about-- I think they were sceptical, afraid, that sons and daughters were silent and now they can actually speak for themselves.

JOHN HERSOV

It was still quite a novel idea, a new idea. So the fact for people themselves to be able to talk with confidence about what was important to them, for a lot of people, was quite hard.

GARY BOURLET

And then they were saying, ‘John, your group is special. Ours never could do that.’ It was all that sort of thing going on.

JOHN HERSOV

And if we don't ask them and involve them in whatever we are working on or doing, not only are we going to be missing a very big trick, but we will fall into the trap of doing to, and for, and whatever other people without finding out what's important to them.

End transcript: Video 4

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Video _unit9.2.1 Video 4

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How did UPIAS help sow the seed for self-advocacy?

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Answer

UPIAS said that people were not disabled by their bodies or minds, but by how they were treated by society. They said it was time for disabled people to start talking about what they wanted and needed, and that society needed to listen.

Why was Gary Bourlet so excited about self-advocacy when he visited the People First conference in Washington in 1984?

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Answer

Gary talked about his surprise at how confident people were, how they were speaking out for themselves. He wanted to be like that and was inspired to set up a People First Group in London when he got back.

What were some of the early challenges for self-advocacy?

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Answer

There seemed to be some concern – even from parents – about people speaking up for themselves. Some people suggested that Gary and John’s group was somehow ‘special’ or ‘unusual’ and other people would not be able to do what they were doing.

It took a while for self-advocacy to get off the ground in the UK. But those early sceptics were eventually proved wrong. By the 1990s self-advocacy groups were set up all over the country, in all different types of places, by a range of different people. The numbers and power of self-advocacy groups has ebbed and flowed over the years, often due to policy and funding issues and in recent years many self-advocacy groups in the UK have seen their funding cut.

2.1 The impact of self-advocacy

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Self-advocacy is about people with learning disabilities working together to make change. This could be about personal change, or political change. The main point about self-advocacy is that it recognises that people with learning disabilities are the experts in their own lives.

Watch this film of Kelly Edwards, a self-advocacy support worker at Northamptonshire People First self-advocacy group, talking about the importance of ‘peer support’.

Download this video clip.Video player: Video 5 >

Video _unit9.2.2 Video 5

Transcript: Video 5

KELLY EDWARDS

We have a lot of new members come on, but you've then got the old members to guide them, as well. It's not just about me guiding them it's about them taking experiences from the older members.

And we also run a-- once a week, we just have a drop-in morning. And it's just literally for people to chat about life experiences. And then someone will say, this is going on, and I'm struggling with this. And someone say, ah, I've had that issue.

So a lot of the time, it's about them finding their own solutions. And then, occasionally, I'll have to chip in, or another member of staff will say, have you've tried this? Have you tried that? But generally, there's another member there who's been through the same sort of thing, so they can help them out, really.

We try not to-- unless we really have to, we try not to-- we're there to support. And if they ask for advice, we'll give advice. And if we feel that someone is really in danger, then we will step in. But generally, between them, and the older members, and other members' experiences, they can sort it out themselves, really.

End transcript: Video 5

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Video _unit9.2.2 Video 5

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Now complete Activity 4.

Activity _unit9.2.2 Activity 4 The power of self-advocacy

Allow about 10 minutes

First watch this film about Shaun Picken talking about his involvement in self-advocacy group My Life My Choice.

Download this video clip.Video player: Video 6 >

Video _unit9.2.3 Video 6

Transcript: Video 6

SHAUN

What self-advocacy groups are for is to talk about sex and relationships. They talk about politics. They talk about whatever needs to be spoken about, which are important to people with learning disabilities. And what they are for is to help gain confidence so people with learning disabilities, so they don't feel isolated.

They become more a part of society. They get more friends. They seem to go out more. They seem to live life to the full, and they seem to be a little bit more politically aware, which is good because you need to be politically aware.

Funding is a massive problem. Self-advocacy charities are closing left, right and centre at the moment.

End transcript: Video 6

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Video _unit9.2.3 Video 6

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Now click the link below to answer the poll on what you consider the most important reason for self-advocacy.

Link: Self-advocacy

Once you have submitted your choice you can then see how others have voted.

According to Shaun, funding is also a big problem with many self-advocacy groups being forced to close. This is very concerning, especially considering how important self-advocacy groups can be for people with learning disabilities.

It is not just people with learning disabilities who are speaking up for themselves and others though. Family members also have a long history of advocating. You will explore this more in the next section.

3 Family advocacy

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

While many people with learning disabilities can speak for themselves, for others, this may be a very challenging – if not impossible – task. In these instances, parents and other family members often advocate on behalf of their relatives who cannot speak for themselves.

Listen to this short video of Phil, who you first met in Session 1, talking about how his parents were in the ‘vanguard’ of the social policy changes that have happened since the mid-twentieth century:

Download this video clip.Video player: Video 7 >

Video _unit9.3.1 Video 7

Skip transcript: Video 7

Transcript: Video 7

PHIL

Bernie is 68 and probably in the oldest 10% of Down syndrome people in the country. So she's been in, I like to think of it, the vanguard of all of this change. She didn't choose to be in the vanguard of all of this change. And my parents didn't really choose to be in the vanguard of all this change.

But they fought in that vanguard to make the changes that have happened. It would have been nice if some of those things had already happened. And I hope that now going forward that there is a better-- that they have a better opportunity for participation in society than they had when Bernie was born.

End transcript: Video 7

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Family advocacy really took off in the post-war period. Parents who were unhappy that their children were being denied access to education started actively campaigning and networking with each other.

The organisation which later became Mencap (England and Wales) was founded in the 1940s and Enable (Scotland) was founded in 1954. The energy and passion of collective parent advocacy has revived since austerity measures began to impact on social care after 2008. But family advocates often report how hard they’ve had to fight to ensure their relatives get the support and care they need. For many, it’s something that they think about 24/7 and the strain often affects their own health and wellbeing (Walmsley et al., 2017).

3.1 Advocating for life

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Many people with learning disabilities rely on their families to advocate on their behalf. This is a role that often lasts a lifetime, and the physical, mental, emotional and financial impact on family carers can be significant.

Activity _unit9.3.1 Activity 5 Parent perspectives

Allow about 10 minutes

Watch this video from Learn with Us where you will hear short accounts from three parents: Margaret, Jean and Norman. You will also hear briefly from Maureen, a practitioner. As you listen, make a note of any comments made by the parents that really stand out for you. Also make a note of how you think the parents’ lives have been affected by their caring responsibilities. Write your thoughts in the box below.

Download this video clip.Video player: Video 8 >

Video _unit9.3.2 Video 8

Transcript: Video 8

MARGARET

You're interfering when you come and you says, has he done so-and-so? Or, where is his clothes? Why is his clothes so-and-so? You're interfering.

Because he doesn't have a voice. Well, I personally feel that I'm his voice. Well, they probably think I'm an overprotective person. Maybe. Maybe they think I'm overprotective.

Right now, I'm talking to you now and I'm thinking about him now. Today is Saturday. Maybe they have taken him swimming. Yeah, maybe. If not, he's probably in his room there.

MAUREEN

Family carers have had to be tough. They've had to develop a persona that says, no, that's not good enough, maybe force them to be ways that they wouldn't naturally be. But they've not had an option because you know being quiet and passive won't get what your son or daughter needs.

NORMAN

We're Jean and Norman Wilson, parents of Tara and Victoria. Victoria is severely disabled. We are London working class. Jean?

JEAN

No, I agree with that.

JEAN

After a series of places where it didn't work well, we decided she should live in our own home. She has a team of workers-- mostly young women, a couple of young men-- handpicked by the service provider, which is Centre 404, who we trust. And she's lived there safely and happily for 22 years.

We know with Victoria's house, she and her fellow co-tenant, they are the most important people. And everything else works out from them. And also that we are involved as equal partners, really, as part of her team. And that's taken us a long time and a lot of tears, anguish-- and there have been rewards as well-- to get it that way.

NORMAN

My memory of everything that's happened over the last 40 years is, at times, patchy. A lot of it is gone completely because things were so horrific that I think-- in those circumstances, you do tend to blank out. We've had everything and everybody, people that have been very good and people that you wouldn't trust with your cat.

JEAN

Where Victoria used to live in the past, we weren't part of her life. She was part of an institution. We could only go in on their terms. And I used to come away and that's when the heartache and the impotence is there. And I know for parents who don't and can't say anything, it really damages their health.

End transcript: Video 8

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Discussion

Comments that you might have noted down include: ‘horrific’; ‘I feel I am his voice’; ‘lots of tears and anguish’; ‘parents have to become tough’; ‘damages their health’.

You may have identified that the parents experience: constant worry (including when the children leaves home); anxiety about being seen as overprotective; trying to strike a hard balance between advocating but being viewed as ‘interfering’; having their own life chances affected.

Family advocates could be helped by being listened to and developing trusted relationships with services and practitioners. Jean, one of the family carers in the Learn with Us film, said:

Figure _unit9.3.1 Figure 1 Developing trust in services can be difficult for family carers

Self-advocates and family advocates often fight for very specific improvements to an individual’s life. But they also come together collectively to press for wider social change. In the next section, you will learn more about the changing policy landscape in learning disability in recent years, and the impact this has had on people’s lives.

4 Changing the system

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

The rights of people with learning disabilities were emphasised strongly in the 2001 Valuing People White Paper. This was the first policy document in England and Wales to focus on learning disability for 30 years. In Scotland, The Same as You policy was published in 2000.

Activity _unit9.4.1 Activity 6 Valuing People

Allow about 10 minutes

Watch this short video about the Valuing People White Paper and then think about what you consider to be its most important aspects by answering the poll at the link below.

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Video _unit9.4.1 Video 9

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Transcript: Video 9

[MUSIC PLAYING]

NARRATOR

In 2001, the re-elected New Labour government initiated the white paper, Valuing People, a policy document to inspire changes which would lead to improving the lives of people with learning disabilities.

MAN

It was during Valuing People, when that came out, I thought that was something was starting to make a real change and make an influence.

MAN

Valuing People now.

WOMAN

Valuing People now.

MAN

Valuing People now.

ROB GREIG

There hadn't been any government policy or formal statement since 1971. And the world had changed an awful lot in that time.

NARRATOR

Rob Greig is the director for the National Development Team for Inclusion. He was co-author for the 2001 Valuing People white paper.

ROB GREIG

Policy bore no relationship to what was happening in the lives of people with learning disabilities. And across the country, there were some really interesting, innovative developments happening. And at the same time, there were some very backward, dated approaches. So I think a number of people in government began to realise that there needed to be some greater clarity as to what people were supposed to be doing.

WOMAN

People with learning disabilities should have the same rights and choices as everybody else.

MAN

And the same chances as anybody else.

ROB GREIG

I think we had broad aspirations that we knew people's lives had to be changed, that people had to be given more power and control over their lives. But I think that the precise detail wasn't necessarily there. Because one of the things that it's important to emphasise about Valuing People is it was the first, certainly, Department of Health and probably, government policy that was actually developed in partnership with the people who the policy was about.

MAN

There were going to be no day centres after 2010. And there was all those getting people properly back into the community. Closure would [? be against ?] long institutions. And we saw it all on paper, but we couldn't wait till the time come around.

ROB GREIG

The big shift the Valuing People white paper did was, up till then, national policy and therefore, the way services had behaved were based upon the premise that services needed to do something to help these poor, unfortunate people with learning disabilities. And I choose my pejorative words intentionally. And what we aim to do with the white paper was to flip that on its head. So the issue became how can services help and support people with learning disabilities to live lives as equal citizens? So it started for the first time from a policy position that people had equal rights, that they should be able to do the same things as others did, and crucially, that the voice of people with learning disabilities, and indeed, their families as well.

End transcript: Video 9

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Link: The value of Valuing People

Video _unit9.4.1 Video 9

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Once you have submitted your choice you can then see how others have voted.

Valuing People is recognised as a landmark piece of policy in learning disability. But it is also acknowledged that Valuing People did not create the widespread change that people hoped it would. Some of the changes it advocated – such as closing day centres – have since been criticised for reducing people’s opportunities to socialise, and putting more pressure on families.

4.1 The impact of austerity

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Just seven years after Valuing People was published, the financial crash of 2008 happened. The squeeze on funding for public services that followed made it very difficult for even the most progressive local authorities and services to support people with learning disabilities in the way they wanted.

Activity _unit9.4.2 Activity 7 Service cuts

Allow about 10 minutes

Watch this next video of Professor De Shutter (UN Committee on Economic, Social and Cultural Rights) speaking about the impact of austerity on the lives of people with learning disabilities. Then answer the question that follows.

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Video _unit9.4.2 Video 10

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Transcript: Video 10

NARRATOR

In June 2016, the UN Committee on Economic, Social, and Cultural Rights found Britain to be in breach of its international rights obligations by the disproportionate effect of austerity measures upon the poorest, most in need, and disabled people of the UK. UN Special Reporter Professor De Schutter is on the committee responsible for analysing the evidence and preparing the UN report.

PROF. DE SCHUTTER

The Welfare Reform and Work Act of 2016 have led, for the first time in its history, the Committee on the Rights of Persons with Disabilities to launch a formal inquiry into the situation in the UK. And there was evidence of a flagrant and systematic violation of the rights under the Convention on the Rights of Persons with Disabilities. So this is very unique. It's an unprecedented use by the Committee of that to the inquiry procedure, which can only be used in the most extreme situations.

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Video _unit9.4.2 Video 10

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What were some of the terms used by Professor De Shutter (UN Committee on Economic, Social and Cultural Rights) to describe the situation in the UK in 2016?

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Answer

You may have been surprised, or even shocked to hear some of the words used by Professor De Shutter. He talked about the ‘flagrant and systematic violation’ of people’s rights in Britain, which was ‘very unique’ and ‘unprecedented’. He said it was an ‘extreme situation’.

Now watch the next video about the situation of people with learning disabilities in residential care. Then complete the drag and drop activity that follows.

Download this video clip.Video player: Video 11 >

Video _unit9.4.3 Video 11

Transcript: Video 11

ROB GREIG

The prevailing model of housing and support for people with learning disabilities in this country is residential care. But the residential care legislation that we have results in people immediately having a number of rights taken away from them when they move into a residential care home. So for example, they could be moved out of that house at the whim of a local authority or a care provider because someone else needs it for cost reasons.

They have no say over who goes in and out the front door of that house, over who supports them. They can't decide to have people to stay overnight if they wanted to. So what happens to relationships? If a person wants to get a job, the benefits system around residential care effectively prohibits that happening. So a whole series of rights are immediately compromised by the prevailing legislative framework for supporting disabled people. Those kinds of things need to be looked at as part of the government's response to this report on the convention.

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Video _unit9.4.3 Video 11

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Match each situation with the United Nations Convention on Rights of Persons with Disabilities (UNCRPD) rights that might be compromised when a person lives in residential care.

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Cuts to funding and changes to the benefits system have been pretty devastating for some people with learning disabilities in recent years. As this activity has shown, people’s lives continue to be restricted by systems and policies that they have no control over. In the next section, you will consider the impact of attitudes.

4.2 Changing attitudes

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

Are laws, policies, statements of rights and even resources enough to ensure people with learning disabilities live their lives as equal citizens? Or for people to truly feel like they belong, do wider attitudes towards learning disabilities need to change? Complete Activity 8 now which asks you to consider what factors could help to change attitudes.

Activity _unit9.4.3 Activity 8 How people are valued

Allow about 5 minutes

First watch this video of Jan Walmsley, co-author of this course and expert in the social history of learning disability, talking about attitudes towards people with learning disabilities.

Download this video clip.Video player: Video 12 >

Video _unit9.4.4 Video 12

Transcript: Video 12

JAN WALMSLEY

What we really do need to change is attitudes. I think that is at the bottom of it. I think it's how we value or don't value people with disabilities of all kinds, actually. I mean, learning difficulties is pretty low on the sort of pecking order. But people with disabilities of all kinds are less valued than non-disabled people, I think.

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Video _unit9.4.4 Video 12

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Now click the link below to answer the poll on what you consider the most significant factor needed to encourage people to change their attitudes and value those with learning disabilities more.

Link: Changing attitudes

Once you have submitted your choice you can then see how others have voted.

Changing society’s attitudes towards people with learning disabilities is one of the greatest challenges in helping people to feel like they belong. Prejudice can be very entrenched and difficult to tackle. It is important that more is done to shine a light on the challenges that people with learning disabilities face in their day-to-day life.

There is also a need to see and hear more examples of the positive contributions that people with learning disabilities make, and how they are valued by friends, family, and the wider community.

In the final section of this session, you will explore the important role of the workforce in helping people to feel like they belong.

5 Working with people with learning disabilities

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

In this course, you’ve heard a lot about the experiences of people with learning disabilities and their families.

Now you will turn to look in more depth at what it’s like to work with people with learning disabilities, and why people want to do it.

Box _unit9.5.1 Box 1 The social care workforce in England in 2018

Most people who support people with learning disabilities are in the social care workforce, one characterised by low wages, poor working conditions and high staff turnover. Here are some key facts about the social care workforce in 2018:

Accounts for 1.6 million jobs.
A quarter of the workforce (25%) are on a zero-hours contract (335,000 jobs).
The staff turnover rate was 30.7%, equivalent to around 390,000 leavers in the previous year.
Many of these leavers move to other roles within the sector as 67% of recruitment is from within adult social care.
Workers had, on average, 8.2 years of experience in the sector.
The vacancy rate was 8.0%, equivalent to around 110,000 vacancies at any given time. The majority of these vacancies (76,000) were care workers.
A fifth of all workers (320,000 jobs) were aged over 55 years old.
The majority (82%) of the adult social care workforce were British, 8% (104,000 jobs) had an EU nationality and 10% (130,000 jobs) were of a non-EU nationality.

(Source: Skills for Care, 2018)

Activity _unit9.5.1 Activity 9 The view of a support worker

Allow about 10 minutes

Kelly Edwards has worked with people with learning disabilities for over 30 years. She is employed as a support worker for a self-advocacy organisation, but is also a carer for people with learning disabilities who need one-to-one support.

Watch this film of Kelly Edwards talking about her job.

Download this video clip.Video player: Video 13 >

Video _unit9.5.1 Video 13

Transcript: Video 13

KELLY EDWARDS

My role with Northamptonshire People First-- I've been there about nine years now, I think-- and that is office coordinator. And that is to help run the office and to support the members in running the organisation.

But I have been involved with people with learning disabilities since I was about 18, when my mum set up a residential home. And it was from a few of my mum's issues is that I met people from People First. And that's how I ended up working there.

I think the basics are that you need to care. You need to be very caring. And you need to care to make a difference for them. But you need to be patient. You need to be thick-skinned. You need to have a good sense of humour.

But I think they are the main skills you need, really. And I think a lot of the people I work with have taught me the rest of the stuff I've needed to know along the way.

Well, it's nice to see them achieve. It's nice to see that you're making a difference. And that's the main things, really, to see them happy.

The only issues were probably that have been low are our cuts to funding, seeing people lose support hours. And then the changes around benefits and things like that that have been really difficult for people to cope with over the last, I'd probably say, three or four years.

That's probably where the low points have been. But you know, we just try and get people sorted.

End transcript: Video 13

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Session 8 compulsory badge quiz

Video _unit9.5.1 Video 13

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Complete the table below based on Kelly’s views:

Table _unit9.5.1 Table 1 Supporting people with learning disabilities

The qualities and skills Kelly thinks are needed to do the job	Why Kelly likes the job	What Kelly has found difficult about the job
Table 1 Supporting people with learning disabilities 1	Table 1 Supporting people with learning disabilities 2	Table 1 Supporting people with learning disabilities 3

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Answer

Here are some of the things you might have noted down:

Table _unit9.5.2 Table 1 Supporting people with learning disabilities (completed)

The qualities and skills Kelly thinks are needed to do the job	Why Kelly likes the job	What Kelly has found difficult about the job
Being caring	Seeing people achieve	Cuts to funding
Being patient	Making a difference to people’s lives	Seeing people lose their support hours
Being thick-skinned	Seeing people happy	Seeing people struggle with changes to the benefits system
Having a sense of humour

You may have noticed that Kelly also said that people with learning disabilities have taught her most of what she needs to know to do the job well. Kelly enjoys her job and takes great pride in it. The challenges of the job that she describes are all related to wider social and political issues – cuts to funding and changes in the benefits system. What Kelly continues to like about her job is having the opportunity to work alongside people with learning disabilities, and supporting them to live the lives they want.

Good support is vital for people with learning disabilities. It’s crucial that great care is taken to recruit the right people to the job, to train them properly, and to give them good working conditions. This is a key challenge for the future.

6 This session’s quiz

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

It’s now time to complete the Session 8 badged quiz. It is similar to the previous quizzes but this time, instead of answering 5 questions there will be 15, covering Sessions 5–8.

Remember that the quiz counts towards your badge. If you’re not successful the first time, you can attempt the quiz again in 24 hours.

Open the quiz in a new tab or window by holding down Ctrl (or Cmd on a Mac) when you click the link. Come back here when you are done.

7 Summary of Session 8

The Open University — Mon, 13 Jan 2020 08:29:11 GMT

In this session you have learned that people with learning disabilities have the same rights as everyone else, but that these rights are not always upheld. The system needs to change, funding needs to improve, attitudes need to shift, and people with learning disabilities and their families must continue to be empowered to speak out and ask difficult questions.

In this session you explored:

why it has proved so hard for people with learning disabilities to have their rights upheld
the role of self-advocacy and family advocacy in helping people to understand their rights and get their voices heard
the role of the workforce in helping people to uphold their rights.

A whole range of people with learning disabilities, families, support workers, academics, activists, professionals, commissioners and policy-makers are working hard to make things better, but this course has shown there is still a long way to go if people are able to feel like they truly belong in society.

Activity _unit9.7.1 Activity 10 Make a pledge

In 2018, the BELONG Manifesto was launched by Access all Areas, Beyond Words and The Open University. Read through the BELONG Manifesto, which is designed to get people thinking about what is needed to help people feel like they belong. You should open the manifesto in a new tab or window by holding down Ctrl (or Cmd on a Mac) when you click the link.

Link: BELONG Manifesto

Is there anything that you think you can do to help make a difference to the lives of people with learning disabilities? Make your pledge here and then revisit it in a few days, weeks and months. You can connect with other people who are interested in the Manifesto using the hashtag #LDBelong.

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The final word of this course goes to Charlene.

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Video _unit9.7.1 Video 14

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Transcript: Video 14

CHARLENE

You know we're just human beings trying to get on with our lives.

End transcript: Video 14

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