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Self-Directed Support and Human Rights

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Course: Self-Directed Support- Making the Law Work for You SDS, Human Rights and Equalities
Book: Self-Directed Support and Human Rights
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Date: Sunday, 28 April 2024, 8:19 PM

Table of contents

What are human rights?


The concept of defining and codifying certain basic Human Rights came to the fore following the traumas of the Second World War, which prompted the international community to make efforts to agree on everyone’s rights and set up a system to protect them.

Foundation of an international human rights system 

This sense of a common interest gave rise to the Universal Declaration of Human Rights (UDHR) in 1948, which is the foundation of the international human rights system.

The UDHR sought to establish the fundamental rights for everyone, necessary for freedom, justice and peace in the world and recognised 30 human rights to include everything considered essential to a democratic society.  


“...recognition of the inherent dignity and of the equal and inalienable   
rights of all members of the human family is the foundation of freedom, 
justice and peace in the world”
  Preamble to the Universal Declaration of Human Rights, 1948

So from the outset there was a recognition that human rights referred to things that were important in people’s everyday lives. 

Eleanor Roosevelt, Chairperson of the United Nations Human Rights Commission that drafted the Universal Declaration of Human Rights, put it like this

“Where, after all, do universal human rights begin? In small places,   
close to home - so close and so small that they cannot be seen on 
any maps of the world. Yet they are the world of the individual person;    
the neighbourhood he lives in; the school or college he attends;the
factory, farm, or office where he works…Unless these rights have       
meaning there, they have little meaning anywhere. Without concerted
citizen action to uphold them close to home, we shall look in vain for 
progress in the larger world.”

They included the right to live or vote or not be locked up without reason, the right to work, earn money, get an education and have health care.

The Universal Declaration of Human Rights recognises that all of these things are needed to really be free; they interact with each other to create freedom.

The recognition of Universal Rights also helps in setting the limits of state power.  Human rights laws essentially set out a contract between a government and the people of the country.

National governments accept duties under international law to respect, to protect and to fulfil human rights which means not taking away our rights, but also ensuring others don’t take them away and sometimes, actively taking steps to fulfil them.

These responsibilities extend to all public authorities including Government, councils, schools, the NHS and indeed anyone providing public services.

A Human Rights Based Approach

A Human Rights Based Approach means putting human rights considerations at the centre of all policies and practices.

In this way human rights are seen as both a means or process of achieving a desired outcome, driven by human rights standards and principles, as well as the outcome you want to achieve, that is, a situation where human rights are fully realised.

It involves integrating the legal standards and principles of the international human rights systems into policymaking as well as day to day practice.  It can be applied to all areas of public life that affect human rights, including housing, education, policing, social care and health. 

This approach is founded upon a set of core principles summed up in the PANEL approach which emphasises the following five elements, founded directly upon human rights law:

Participation: everyone has the right to participate in decisions which affect their human rights. This involves issues of accessibility including provision of information that people can understand

Accountability of duty bearers (those who make decisions which affect rights) to rights holders (those whose rights are affected): this requires both effective monitoring of human rights standards and effective remedies when not met

Non-discrimination and equality: This encompasses eliminating discrimination but also prioritising those in the most marginalised situations who face the biggest barriers to realising their rights. This part of the approach requires you to ask, does the activity identify who is most vulnerable, marginalized and excluded? Does it pay particular attention to the needs of vulnerable groups such as women, minorities and disabled persons?

Empowerment of rights holders: in order for a Human Rights Based Approach to be effective, everyone should know their rights and be supported to participate in decision-making, and to claim their rights where necessary.  Which leaads directly to the final element...

Legality: Recognising that the situation is underpinned by legally enforceable rights.





The Human Rights Framework

The Framework of Human Rights Law is Drawn from the following sources

The Universal Declaration of Human Rights - this is commonly seen as the foundation of international Human Rights Law.  Adopted in 1948 it has been an inspiration for a wealth of international treaties and other instruments which form the backbone of Human Rights Law

International treaties
(including UN Convention on the Rights of Persons with Disabilities)


International treaties place on signatory States certain obligations and duties under international law.  In order to ratify these treaties, Governments undertake to put into place domestic measures and legislation compatible with their treaty obligations and duties.It is the domestic legal system, therefore, that provides the principal legal protection of human rights guaranteed under international law.

European Convention on Human Rights

The ECHR was drafted in the aftermath of the Second World War as part of a wider response of the Allied Powers in delivering a human rights agenda through which it was believed that the most serious human rights violations which had occurred during the  War could be avoided in the future.

Human Rights Act 1998 and Scotland Act 1998

These make provision for the rights contained in The European Convention of Human Rights to be enforced domestically in Scottish Courts and ultimately the Supreme Court.  This does not effect the rights of individuals to take matters to the European Court of Human Rights

The European Convention on Human Rights 1950




By Rob984 - Derived from File:Europe orthographic Caucasus Urals boundary (with borders).svg, CC BY-SA 4.0, https://commons.wikimedia.org/w/index.php?curid=41218742

The European Convention on Human Rights (ECHR) arose directly out of the aftermath of the Second World War.  It was drafted by the Council of Europe in Strasbourg during the summer of 1949.  It is important to note that it is a creation of the Council of Europe, not the EU. The ECHR has been around since 1950.

The ultimate enforcement of the rights granted under the Convention is by the European Court of Human Rights, (ECtHR) in Strasbourg. Again the jurisdiction of the ECtHR is completely separate to the EU.

Certain core concepts underpin the ECHR.

It is a “living instrument”, which means that it evolves with the times, depending on contemporary standards, so that it can adapt to situations which might not have been foreseeable when it was written

There should be a “margin of appreciation” . The European Court of Human Rights developed the concept of a "margin of appreciation" to recognise that the broadly-drawn principles of the Convention may be interpreted differently in different societies. This means each country is given some leeway where judges are obliged to take into account the cultural, historic and philosophical differences between Strasbourg and the particular nation in question, since what is right for Spain, for example, may not be right for the UK.  

The rights are expressed in terms of positive and negative obligations. There are 'Negative duties'  or the duty to not  do something, (for example, to refrain from interfering in someone's private life or not subjecting someone to inhuman treatment), and there are 'positive duties' or an obligation to actively do something to protect the right.  

The above is closely related to the idea that rights must be 'practical and effective'. This encourages us to think not just of theoretical rights but rights that must be interpreted in a way that makes sure they can be realised in practice (e.g. right to legal aid is implied in right to fair trial, otherwise the right is rendered meaningless)

Absolute, limited and qualified rights.  We will come on to explain the differences further but this is the idea that some rights can never be infringed whereas it might be necessary to infringe on others in some circumstances.  

The idea that sometimes there must be a 'balancing exercise'  between an individuals rights and responsibilities, (and those of the state) and the idea that there may be circumstances where different rights are competing with each other.  In such instances infringements on rights must be necessary and proportionate.

The Categories of Rights

It is important to understand that there are different categories of rights and this is fundamental to how the ECHR works in practice.

Absolute rights

You should be aware that some rights are 'Absolute' which means there cannot be a justification for interfering with them or ignoring them in any circumstances

Article 3 of the ECHR stipulates:

"No one shall be subjected to torture or to inhuman or degrading treatment or punishment."

In the context of SDS this could include such things as abuse or neglect; the disproportionate use of force or restraint or grossly inadequate medical or personal care or treatment.

The important element to recognise about Article 3, is that although it is absolute, for treatment to engage the Convention right it requires a 'minimum level of severity', taking into account such factors as the duration; the physical and mental effects of treatment; the sex, age and health of victim.  

This is a HIGH BAR.  The minimum level of severity takes into account prevailing standards, including medical standards so treatment which is a therapeutic necessity within established medical standards does not meet the minimum level of severity. By way of example, involuntary treatment for mental disorder, is unlikely to reach a minimum level of severity so as to engage Article 3, (although there is ongoing debate about this at UN level).

Examples of treatment which breaches Article 3 include the following;

Failure to treat someone with care.

UK case (McGlinchey and Others v the United Kingdom [2003])

This concerned a wife and mother Ms McGlinchey, who had a heroin addiction and who died a week after being imprisoned. The applicants, her husband and children alleged that there had been a failure to provide the requisite level of medical care. They alleged, among other things, that the prison authorities had deliberately withheld her medication and locked her in her cell as a punishment for her difficult behaviour; that they had administered her medication irregularly; and that she had been left lying in her own vomit.  The Court found this to be a breach of Article 3.

Disproportionate use of force or restraint

French case (Mouisel v France [2002])

The Court found a violation of Article 3 where the elderly prisoner was kept handcuffed to the bed during a hospital visit.  The Court found this to be a disproportionate action in comparison to the risk he presented.

Some rights are Limited rights which means they can be restricted in certain specific circumstances.

Article 5 - Right to liberty and security of person

It is fairly easy to imagine circumstances where it would be contrary to someone's human rights to deprive them of liberty or security.  Equally it is easy to imagine circumstances where this might be entirely necessary.  This is an example of how the context of an action changes the nature of that action.

Article 5 starts by saying this:

"Everyone has the right to liberty and security of person. No one shall be deprived of his liberty save in the following cases and in accordance with a procedure prescribed by law:"

It then goes on to detail the permitted exceptions: i.e. lawful detention after conviction, lawful arrest or detention for non compliance with order of court or to fulfil an obligation prescribed by law, arrest or detention for purposes of bringing before court where reasonable suspicion of having committed a crime, educational supervision, mental illness, subject to deportation or extradition.

The remaining parts of Article 5 require that the detained individual is provided with:

  • Information about the reason for detention
  • Trial within a reasonable time or release pending trial
  • The opportunity for the Judicial determination of the lawfulness of detention
  • Compensation, which is particularly relevant to immigration detention, sectioning and informal detention in relation to mental health as well as imprisonment.
The Bournewood Case
This concerned a Mr L who was an adult who was autistic and had profound learning disabilities. He had lived in the Bournewood Hospital  for over thirty years until he was discharged into the community to live in an adult foster placement with carers Mr and Mrs 'E'. Some time later became agitated at a day centre he attended and was admitted to the Accident and Emergency Department at Bournewood Hospital under sedation. Due to the sedative, he was compliant and did not resist admission, so doctors chose not to admit him formally under the Mental Health Act. He never attempted to leave the hospital, but his carers were prevented from visiting him in order to prevent him leaving with them. A report by the Ombudsman heard evidence from a range of professionals that the standard of his care had been poor in the hospital, and he had become distressed and agitated. Mr and Mrs 'E' sought from the court a judicial review of the decision of the Bournewood Community and Mental Health NHS Trust to detain the appellant and to continue his detention.  The application was dismissed by the High Court but an appeal to the Court of Appeal was allowed.

In the case of R v Bournewood Community and Mental Health NHS Trust Ex p. L [1997] EWCA Civ 2879, the House of Lords (now the Supreme Court) concluded by a majority verdict that Mr L had not been detained within the meaning of the common law because there must be actual and not just potential restraint.

For the Lords, the key determining factor was whether the person is subject to continuous supervision and control and is not free to leave.  With regard to the issue of consent the majority decision was that you cannot assume a person lacking capacity has consented to a deprivation of liberty (even if they appear to be compliant!).

There was a dissenting judgement from Lord Steyn in which he stated that the Trust's argument that Mr L, not being formally detained, was always free to go 'stretched credulity to breaking point' and was 'a fairytale'.

European Court of Human Rights
Since the decison pre-dates the incorporation of the ECHR into domestic law, the  case was pursued at the European Court of Human Rights(in a case known as HL v United Kingdom [45508/99]) for a declaration that Mr L had been deprived of his liberty unlawfully in the meaning of Article 5 of the European Convention on Human Rights.

The Court held that he had and that there had been a breach of his Article 5 rights. They agreed with Lord Steyn that he had in fact been detained, and considered that the distinction relied upon by the House of Lords between actual and potential restraint was not 'of central importance under the Convention'. They further found that the common law did not provide the requisite safeguards for informal detention of compliant but incapacitated patients such that it could not be described as 'in accordance with a procedure described by law' as required under Article 5(1)(e).

Cheshire West Case

The case of P v Cheshire West and Chester Council [2014] UKSC 19 (The Cheshire West Case) the Court clarified the test and definition for Deprivation of Liberty for adults who lack capacity to make decisions about whether to be accommodated in care.  It made clear that this extended beyond traditional detention to a range of health and social care settings, including in domestic style settings.

The Court made three main points:

  1. The 'acid test' for deprivation of liberty is whether the person is under continuous supervision and control and is not free to leave. 
  2. Because of the extreme vulnerability of people like P, decision-makers should err on the side of caution in deciding what constitutes a deprivation of liberty.
  3. The following are not relevant:
    (a) the person's compliance or lack of objection;
    (b) the relative normality of the placement (whatever the comparison made); and
    (c) the reason or purpose behind a particular placement.


Examples of deprivation of liberty
Deprivation of liberty can be a real issue in health and social care settings, where there can be a range of elements of care which amount to deprivation of liberty. For instance, they may occur in the course of placing the person in hospital for physical health or psychiatric care and treatment or in a care home and their continued stay there. Deprivations of liberty can also occur whilst the person is living in conditions that are very similar to a domestic home environment.  Potentially, measures such as the use of force, restraint (physical or through medication), seclusion, ‘time out’, overly intrusive observation, using electronic devices, locked doors/wards and freedom to interact with others outside the institution may, in certain circumstances, amount to a deprivation of liberty. 

Whether or not they do will depend on the particular circumstances of the case but it is important to note that the idea that restrictions are in place for the individual’s benefit does not mean that they are not restrictions. As Lady Hale put it, “a gilded cage is still a cage”.  This does not mean that restrictions cannot be put in place but does mean they would need to be justified and accompanied by the procedural guarantees of Article 5.  So in these circumstances, authorities will need to seek legal authority for the deprivation of liberty.

Qualified rights

Also have what we call "Qualified rights" which are rights which require a balancing act to be carried out i.e. they can be restricted if the restriction is justified.

They include the following:

Article 8 - The right to respect for private and family life, home and correspondence
Article 9 - The right to freedom of thought, conscience and religion
Article 10 - The right to freedom of expression
Article 11 - The right to freedom of assembly and association
 
There is considerable scope for the application of Article 8 in SDS decisions as it encompasses a range of elements, including;

  • Autonomy and self-determination: the right to conduct your own life as you choose, including in ways seen to be harmful – this chimes with the law around Adults With Incapacity, in which the definition encompasses the concept of the right to make daft/illogical decisions
  • Participation in decision-making: (e.g. informed decisions about treatment or care).  This requires access to information enabling individuals to assess the health risks to which they are exposed. If subsequently a foreseeable health risk then arises which the public authority failed to advise of this could constitute a breach.  It also means being provided with support for decision making. In this context, the provision of Advocacy support can be seen as a realisation of this right.
  • Privacy: e.g. lack of privacy on wards, privacy of medical records, but could mean a failure to respect an individuals right to keep other parts of their personal life private, eg sexuality
  • Family life: this could encompass inadequate arrangements to allow patients to remain in touch with family members, for example a very short and restrictive visiting policy
  • Physical and psychological integrity: this could cover issues such as intrusive bodily searches or restrictions on liberty falling short of the deprivation required to engage  Article.5.  It could also cover treatment not reaching the minimum level of severity required to engage Article 3, e.g. some situations of seclusion, inadequate service provision

Proportionality and Qualified Rights

Where qualified rights such as under Article 8 are at issue, how do we assess when these rights can be interfered with?

With respect to qualified rights, the essential premise is that the right must be restricted as little as possible, only going as far as is necessary to achieve the legitimate aim.

The following tests should be applied to assess whether the interference in a qualified right is lawful:


  • Is it in accordance with the law: does the proposed action have a basis in domestic law, are there safeguards against arbitrary interference, and is the law  formulated with sufficient precision to enable the citizen to foresee the circumstances in which the law would or might be applied?
  • Is it in pursuit of a legitimate aim: these are usually contained in the Act but have been additionally established and interpreted with reference to the case-law of the European Court of Human Rights.  They include:
“the protection of health”,

“protection of the rights and freedoms of others” (which introduces the idea of balancing competing interests), and

“economic wellbeing” (so resource considerations can be a legitimate aim)

BUT, crucially the interference must also be:

  • Necessary
  • Proportionate
  • Not discriminatory

Proportionality means that the interference must be no more than is absolutely necessary to achieve one of the legitimate aims. The impact of the restriction on the individual must not be excessive in relation to the legitimate interests pursued. In other words, the state must not use a sledgehammer to crack a nut. The more severe the interference with an individual’s rights the more is required to justify it.

In this way the rules try to find a balance between the wider rights and interests of society and the fundamental rights of individuals, in instances where they conflict.

A common example where two rights have to be balanced is the right of freedom of speech versus the right to respect for your private life. In particular, if a public figure’s private life is of public concern because of their position, it may be proportionate and justifiable to interfere with their right to respect for their private life in order to publish information about that person which is in the public interest.

Using the following questions may be helpful in considering the sorts of things that should be asked to weigh this up…


What is the problem being addressed by the restriction upon someone’s rights?


Will the restriction lead to a reduction in the problem?


Does a less restrictive alternative exist and has it been tried?


Does that restriction involve a blanket policy or does it allow for different individual cases to be treated differently?


Has sufficient regard been paid to the rights and interests of those affected?


Do safeguards exist against error or abuse?


Does the restriction destroy the basic ideas behind the human rights at issue?




Human Rights in International Treaties

If we think back to the PANEL approach discussed earlier, and consider the element of 'Legality', this should involve looking at the full range of human rights including International Treaties to which the UK is a signatory.

In addition to the ECHR, the UK has also signed up to a number of international treaties,

Between them, these two Treaties provide for a broader range of rights than ECHR because they include economic, social and cultural rights.

These don’t yet create the same enforceable legal duties here in the UK, but they are all monitored by independent experts at the UN, who look at each country that has agreed to them, every four or so years, and report on how well the country is progressing in ensuring these rights. 

The duties the UK has under some of these are also a little different. The government is not expected to solve all of the issues in relation to something like health or education immediately –  but it must actively  take steps to move in the right direction, always towards those goals and never taking steps backwards. 

Let's look at the important Conventions in a little more detail.

UN Disability Convention (UNCRPD):

The Convention underlines some fundamental principles including participation, human dignity and non-discrimination.  It also identifies certain specific rights.

Some examples of the sort of rights protected by the Convention would include the following;

  • Accessibility (Art. 9)
  • Equal recognition before the law (Art. 12)
  • Right to highest attainable standard of physical and mental health (Art. 25)
  • Right to live independently and be included in the community (e.g. Art. 19)


The Convention doesn’t create new rights but sets out rights disabled people have and the steps that must be taken to remove the barriers they face in exercising them on an equal basis with others. 

Accessibility – this requires what we would term  reasonable adjustments to be made to allow for/support disability

Participating in decision making – this encompasses the right to make decisions in all areas of life, on the same basis as other people and there are duties to provide the support people need to exercise that capacity.  

Recent interpretations are to the effect that decision-making must be supported, not substituted.  This presents a challenge but shows the importance of supporting people in all possible ways to make decisions for themselves e.g. Advance Statements, ADVOCACY, working with family and other supporters.

Right to the highest attainable standard of physical and mental health, without discrimination on the basis of disability – this means the right to be treated the same as anyone else in provision of health services – the same range, quality and standard of healthcare.

Right to independent living -  the right to choose where you live and who you live with and the support to allow that to happen.  This aspect of freedom, choice and control over what happens in the life of a disabled person is fundamental to whole Convention.


International Covenant on Economic Social and Cultural Rights (ICESCR):

Examples of rights included are;

  • Right to highest attainable standard of physical and mental health (Art. 12)
  • Right to an adequate standard of living – housing, food (Art. 11)
Article 12, ICESCR: “right to the highest attainable standard of physical and mental health”: This is not a right to be healthy but a commitment to move towards a system where this is achieved by addressing barriers, providing services that are available , accessible, acceptable and of good quality:


In this context, 'Available' means in sufficient quantity.

'Accessible' means accessible to everyone without discrimination, especially the most vulnerable or marginalised people. This includes being physically accessible and affordable and includes the accessibility of health information;

'Acceptable' means respecting issues of confidentiality and being sensitive to cultures, communities and gender; 

'Good Quality' means scientifically and medically appropriate and of good quality.  

Right to an adequate standard of living, including housing and food -  equally this stops short of a guarantee but requires signatories to move towards a system which promotes the likelihood of this.

UN Convention on the Rights of the Child


The UNCRC is an international agreement that countries – including Scotland  – should obey.

There are Four guiding principles:


Article 2 - All the rights guaranteed by the UNCRC must be available to all children and young people without discrimination.

Article 3 - The best interests of the child or young person must always come first.

Article 12 - The views of children and young people must be considered and taken into account in all matters affecting them.

Article 6 - All children and young people have the right to life, survival and development.

SDS as a human right

The Case for SDS as  Human Right

So where does SDS fit within this framework.  There may be no explicit 'human right' to SDS but there are key human rights concepts which are capable of being realised via SDS and which need to be taken into account in the assessment, planning and delivery of SDS.

Firstly, via Article 8 of the European Convention on Human Rights & The Human Rights Act, SDS can be a means of protecting the right to private and family life.  Article 8 does not cover a finite list of things but, rather, protects a central aspect of dignity and autonomy of the individual.

The Convention on the Rights of Persons with Disabilities reflects throughout the importance of autonomy in ones own life.  It provides the right to participate in decisions which affect you, the right to make decisions for oneself and the support that may be required to help people to do that.  And it provides the right to live independently and be involved in the community, with the support to make that happen.

These both highlight the importance of autonomy and self-determination as a human right, regardless of whether a person has a disability or not.

There are many possible mechanisms by which a government could try to implement or protect these rights but SDS is the policy in place to contribute to a system to realise these rights.


FAIR -rights based decision making

 

The FAIR approach to rights based decision making

It is useful to have a framework to apply to analysing whether decisions are taken in a Human Rights compliant way.  One such approach is the FAIR approach which can be useful in clarifying the issues and responsibilities for putting human rights into practice, particularly when faced with a complex or mutli-faceted situation

It is worth remembering that many of the issues we are looking at are unlikely to reach the threshold for being classified as a human rights violation in the legal sense. 

Nevertheless, looking at them through a human rights lens can help to resolve issues in a way which respects the dignity, autonomy and rights of the individuals involved.

What are the stages of a FAIR approach?

Facts: -What is the experience of the individual? Are they being heard? What are the important facts to understand?

Analysis of rights at stake: -What are the human rights at stake? Can the rights be restricted? What is justification for restricting the right? Is the restriction proportionate?

Identify shared responsibilities: -What changes are necessary? Who has responsibilities for making changes?

Review actions: -Have the actions taken been appropriately recorded and reviewed and has the individual been involved?