Foundations for self-directed support in Scotland
Foundations for self-directed support in Scotland

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Foundations for self-directed support in Scotland

5.8 Different roles: personal assistants

One of the major changes brought about by the introduction of individual budgets has been the growth of a new workforce of personal assistant s (PAs) to support children and adults with a range of needs. The role is no longer a very new one. It does, however, mark an important shift away from formal carers being almost entirely agency-based.

Parents can use an individual budget to employ a PA (or several PAs) to meet their child's agreed support outcomes. PAs can be involved in a very wide range of support activities, including personal care and enabling children to take part in social, leisure and sporting activities. PAs make take on roles as various as assisting a child to shower to accompanying a young person to T in the Park. The Social Care (Self-directed Support) (Scotland) Act 2013 describes the parents of children who are under 16 as 'the supported person' because they are responsible for managing their budget or individual service fund. Parents have a legal responsibility to take account of their child's views about the support, though the extent of the child's involvement in decision-making will obviously depend on the child's age. A young person who is over 16 is themselves 'the supported person' and in control of decision-making about their care (unless they lack legal capacity to make these decisions - see Section 4 [Tip: hold Ctrl and click a link to open it in a new tab. (Hide tip)] ).

The PA may be drawn from existing paid staff or directly from the wider labour market. Sometimes PAs can be family members or someone in the individual's existing social network, although there are restrictions on these circumstances (e.g. when undue pressure has been exerted on someone to make these arrangements).

There are some important differences between the role and accountability of a privately employed PA and someone employed by an agency, such as local authority or voluntary agency. These are explored in the next activity.

Activity 5.5 The role of the personal assistant

(40 minutes)

In this Activity you will listen to parents and a personal assistant talking about their experience of directing their children's support. Both families use an individual budget to employ personal assistants to support their children. First you will Duncan MacKendrick, the father of Cameron (19) who has autism, and Kayleigh, one of Cameron's personal assistants from Enable Scotland . Then you will hear Clare Dooley, the parent of three children with a range of additional needs talking about some of the challenges she has experienced employing personal assistants to support her family.

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Skip transcript: Mr and Mrs McKendrick and Kaleigh Nesbit, personal assistant, Enable

Transcript: Mr and Mrs McKendrick and Kaleigh Nesbit, personal assistant, Enable

Duncan McKendrick
My name is Duncan McKendrick and I live in Kirkcaldy, Fife, in Scotland. We have a son Cameron who will be 19 in July. Sue Campbell from Enable liaises with Cameron and Cameron’s supporters and his team that he chose help him to get out and socialise.
Narrator
You say he chose his team. How did that come about?
Duncan McKendrick
Enable advertised for supporters for Cameron. Then Cameron interviewed all the members and chose which members of the team he wanted. Cameron went out with each, I think he went out with two at a time for a meal and a drink and talked to them and they put their case forward. I think it was only one person he didn’t choose, don’t know, just did not develop a rapport with that one person. It’s very, very important to Cameron that he goes out with somebody who he can relate to because for three years he didn’t speak to anyone but his mum.
Kayleigh Nesbit
My name’s Kayleigh Nesbit and I’m a support worker for Cameron. Basically I work with Cameron out in the community and what we do is we introduce Cameron to new activities and we work towards outcomes that he wants to achieve, so for example travelling independently on the bus. So when we’re out we’ll try and get buses places, trains, rather than using the car so that he can gradually build himself up to being able to do that by himself without having to have me there sort of thing, and there’s various things we work on. So, for example we work on travel, money, just general day to day things like being able to go to the shop and know what he needs to get and just typical things like that, as well as fun things. We’ll go out shopping to Edinburgh or we’ll go to museums, do sports, things like that, really just introducing him as much as possible to being able to do things by himself and with friends.
Some weeks we have a list of things we have to do, such as going to the shops to pick up milk and bread, and other weeks it could be that he’s had a really busy week and he’s tired and he just wants to chill out so we’ll go for a walk somewhere. When we come home again we have maybe ten, up to half an hour sometimes of just talking to mum and dad, letting them know how Cameron has been, him putting his input as to whether he enjoyed an activity if it’s a new one. So sometimes he won’t say to me when we’re out, “I didn’t enjoy that” but the minute he gets home he’ll quite happily say to mum, “I’m not doing that again” and that gives him a chance to get that across as well because he’s not comfortable saying one to one, “I don’t like something”, so it gives him this opportunity to say, “I didn’t actually like that” in a place where he feels comfortable.
Then we fill in our paperwork, which varies obviously, but with Cameron it’s a sheet of paper where we’ll say what we’ve done, how it went, so for example if anything happened that didn’t work and then any other comments, so if there happens to be something that’s been bothering him that gives us a chance to put that down so that the next person then can look at that before they go out and say, “Right okay, so this has been bothering him”. So they know that they can talk to him about it, or he didn’t do very well with his money today so they know that that’s something they maybe need to work on a little bit more. Like I say it tends to be once a week I’ll be with him and then obviously repeated the next week. Occasionally I’ll be on later on in the week and it’s pretty much the same idea with go through that routine of just seeing how things are, going out for the day, coming back and again seeing how things are after that.
I think it works quite well but you have to have a good team built around that. You have to have a team that understand Cameron and his needs; that get on with the family. The worst scenario you could be in is where there’s no communication between the family and the support worker because we are taking Cameron out for the day, they need to know they can trust us, we have to make sure that they can contact us at any point we’re on shift and we can contact them at any point. The whole team has contacts for each other and so there’s constant communication, but I think it’s really important that you’ve got that because without it, it would just fall apart and it wouldn’t work, and especially when you’re working on outcomes, if I’m working on something and it doesn’t work there’s no point in Hannah coming in and doing the exact same thing. We do have quite a small team of about four or five people who work with Cameron on a regular basis, and we are all in constant communication with each other. If any of us notice anything that doesn’t seem quite right we’re straight in touch with the family to let them know. They’ll let us know any concerns that any of the other support workers had but we’ll also let each other know.
How does it feel doing this kind of support work?
Kayleigh Nesbit
I absolutely love it. I wouldn’t change it. It’s not something that I thought I wanted to do when I first started to be honest, but now I wouldn’t change it at all. I absolutely love my job.
What’s so good about it then?
Kayleigh Nesbit
Seeing people making differences in their life and becoming more able to do things, like I’ve worked with Cameron from very early days when he started getting support and the difference in him is great, being able to be there when he does something for the first time and you can see the excitement on his face and being able to say to mum and dad, “Oh, we managed to do this today” is the best feeling in the world.
End transcript: Mr and Mrs McKendrick and Kaleigh Nesbit, personal assistant, Enable
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Mr and Mrs McKendrick and Kaleigh Nesbit, personal assistant, Enable
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Skip transcript: Clare Dooley

Transcript: Clare Dooley

Clare Dooley
My name is Clare Dooley, I’m from Bathgate in Scotland. I’ve got three children with additional needs: my son Michael is the eldest and he is now 17. He was diagnosed at age five, just transitioning from nursery to primary. Patrick is nearly 16, he’ll be 16 in August. He was deafened with Meningitis as a baby at ten months old. Laura is 12, she has Angelman Syndrome.
Just thinking about how you organise support for your three children, who have very different needs, can you say how that’s done at the moment?
Clare Dooley
The thing is w e’ve been employing young carers, mostly young carers to try and keep up with the energy requirements for the kids.
So you were saying ‘we’ve been employing carers’, how does that come about?
Clare Dooley
The fact is that Social Work said they couldn’t find anybody to fit the bill and then I sort of said ‘well actually you know what, how about if you put somebody in to help me with the housework’. So initially my care started with two hours of domiciliary care a week, and if I wasn’t in and usually I had appointments with Social Work or speech therapists, OTs, physios, so if I couldn’t be in the house for that person coming I couldn’t get that two hours of care. They looked about getting domiciliary care workers in, and this was people who had gone into older patients, so they were used to much older people. And they had done a six weeks training course on disability, and thought they knew everything when they came in, and it was just… it was a massive learning curve for them, and there was only, to be honest, two staff and they would come in and help me get organised in the morning and then come back in the evening to help… give me some time to get the dinner done. It was quite stressful, it was a complete intrusion into our life. They were looking through noticeboards and you know I couldn’t have a personal private phone call, my husband and I couldn’t have an argument in peace. The thing is I was so desperate for help that I was willing to accept this pair of hands.
So having a direct payment and being able to organise your support does give you the opportunity to have more choice about a carer?
Clare Dooley
If the right person applies for the job. We have had the wrong people apply for the job, and it came to the point I just said ‘I don’t think things are working’. Unfortunately I mean that’s the precarious employment position that you’re put in, and the fact is that you have to actually manage the staff while they’re in your home. It’s a very vulnerable position to have people in your home, the drag is that people know the ins and outs of our life. People know where you are and where you’ll be and so it is quite vulnerable at times, especially if things aren’t going as well.
There’s a fine line between helping you and hindering, and it’s very difficult to have that personal conversation to say to a carer ‘you’ve overstepped the mark here’.
And there’s been a few carers that you’ve tended to go beyond what you would do, you know I’ve ended up feeding them and helping them out, but there’s give and take in all relationships, but sometimes they don’t understand that they’re being paid to provide a service, but the fact is if I’m organising the service, if I’m not happy with it that rests with me.
End transcript: Clare Dooley
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Clare Dooley
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Once you have listened to the podcasts, use your learning log to identify:

  • examples of the kinds of activities and tasks that a personal assistant might be involved in when supporting children and young people.
  • the skills and capabilities that personal assistants may require
  • potential challenges of working as a personal assistant and/or employing a personal assistant

If you have experience of working as a personal assistant, or employing one, you may want to draw on your own experience, as well as the podcast content, to answer these questions.

Discussion

It is evident from these short podcasts that personal assistants may be involved in a very wide range of activities, depending on the needs of the particular family and child. For example, Clare Dooley describes how the personal assistants who support her family provide domestic help and assist her three children get ready for school. Kayleigh's role with Cameron, a young adult, is more focused on supporting him to develop skills and confidence in more independent living e.g. travelling independently, using money.

Kayleigh, Clare and Duncan all refer to some important skills and capabilities for personal assistants. Just some of those that you may have noted down were:

  • Communication, relationship building and sensitivity to young people's needs and wishes
  • Good team work
  • Respect for family privacy and confidentiality
  • Flexibility (e.g. to respond to young people's changing needs and wishes)
  • Good organisational skills (e.g. to work towards agreed outcomes in a co-ordinated way)
  • Recording skills (e.g. keeping records up to date)
  • Ability to recognise and share concerns (e.g. about risk of harm)

Kayleigh clearly gets a great deal of job satisfaction from her work as a personal assistant. However, there are, inevitably, potential challenges for both the employer parent or young person and the personal assistant. As Clare points out, it can be challenging to find the right people to support children and young people. Managing a team of personal assistants is a potentially heavy responsibility for parents who are already fully stretched caring for their children. Claire also explains that appropriate boundaries between the professional role of the personal assistant and the private life of the family can also be hard to negotiate. Later in this course you will find out more about the kinds of support that may be important for supported people (see Section 5.13 ).

UNISON, one of the UK's largest unions, in its response to the consultation on the self-directed support legislation, has also highlighted some of the challenges of for personal assistants who are employed directly by families and individuals:

User-appointed personal assistants hired directly by individuals raise questions over opportunities to scrutinise their working conditions and regulate practice standards; of awareness of employment rights; of their accountability; of opportunities to benefit from best practice developments; and for collective bargaining.

(UNISON, 2012, p. 10)
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