A statutory right to independent living?

Neil Crowther, October 2017

This discussion note was prepared for the Independent Living Strategy Group

Purpose

This short note provides background information to inform discussion at the Independent Living Strategy Group meeting on 23 October 2017 concerning the case for pursuing new legislation to protect the right to independent living and the form such legislation might take

Summary

  • Disabled people in England do not enjoy a standalone right to independent living. Instead independent living is based on a patchwork of different laws, policies and programmes.
  • Recent years have shown just how precarious the ‘right’ to independent living is in England. Spending cuts and reforms have seen people denied or lose vital supports. Some people face having to move into institutional care, while other are trapped in institutional care because community based alternatives are not available. Some people report having less choice and control over support and their lives than in the past.
  • Both the UK Joint Parliamentary Committee on Human Rights and the United Nations Committee on the Rights of Persons with Disabilities have said that the government needs to adopt standalone legislation. The UN disability committee says that the government should provide ‘all persons with disabilities with substantive and procedural rights to be living independently within the community.’
  • There have been several attempts and recommendations to get a ‘right to independent living’ onto the statute book in England. These include the Independent Living (Disabled Persons) Bill 2006-7, the Independent Living Strategy (2008), the Joint Parliamentary Committee on Human Rights Inquiry into Independent Living (2012), via the Care Act 2014 and the Disabled People (Community Living) Bill 2015.   While each has had some influence on policy and law, none has secured a right to independent living.
  • The Equality and Human Rights Commission will shortly be exploring what a right to independent living might look like.
  • There are various ways the right to independent living might be better protected and ensured in our law. These include:
  • Requiring government and public bodies to have ‘due regard’ to independent living when making policy and taking decisions
  • Strengthening individual rights to support and to choice and control over support
  • Outlawing spending on the development or commissioning of institutional care
  • Requiring national and local government and public bodies including in the NHS to develop and implement independent living strategies
  • International examples of the above approaches are provided in this paper

Independent living as a human right

In its recent General Comment on the right to live independently and to be included in the community, the UN Committee on the Rights of Persons with Disabilities advises that it in order to implement the Convention States Parties should:

‘Provide all persons with disabilities with substantive and procedural rights to be living independently within the community;’

UK activists and independent living pioneers had long framed independent living as a ‘right’, albeit initially influenced overwhelmingly by the ‘civil rights’ approach of their counterparts in the USA, rather than – until relatively recently – drawing on the international human rights framework.   The right to independent living is not however given effect in any one piece of law. Rather, over time, the various ‘pillars’ which underpin it –equality and non-discrimination, accessibility, choice and control over services, personal assistance, employment support, support in education, support with disability related costs and so on – have been given effect, to varying degrees of success, across a wide range of policy, legislation, programmes and in changes to practice and culture.    This is important and valuable, as too often independent living has and continues to be reduced to a question of closing down archetypal institutions – a challenge narrowly confined to the field of social care – when the bigger challenge is that of opening up the community and enabling people’s full participation and contribution within it. However, as the Joint Parliamentary Committee on Human Rights noted in 2012:

‘…while the UK has made progress in developing a rights-based approach to the design and delivery of public service support to disabled people, disabled people in the UK do not enjoy a right to independent living in domestic law….

… While we consider the existing matrix of human rights, equality and community care law to be instrumental in the protection and promotion of the right to independent living, we do not consider it sufficient.’

Despite considerable progress over the past 40 years, the last decade of austerity measures have demonstrated just how precarious the ‘right’ to independent living is in the UK – and England specifically. This is not just in terms of the overall quantum of financial and practical support available, but equally in terms of the control disabled people are able to exercise over their support and day-to-day lives. For some, that loss of control gets to the very core of the right to independent living – the right to choose where and with whom to live on an equal basis with others.   For many others, it is has resulted in increased poverty, loss of opportunities and marginalisation. The Chair of the UN Committee on the Rights of Persons with Disabilities was moved to describe what has happened in the UK as a ‘human catastrophe.’

These setbacks or barriers to progress are fundamentally consequences of economic stewardship, political strategy and public opinion.   We will not in future make progress on independent living without fundamental shifts in the economic climate, political economy and in public attitudes and understanding. However, the absence of a legislative underpinning of the right to independent living has arguably left disabled people extremely exposed, with the assault on people’s human rights often framed simply as ‘savings’ that have been necessary to ensure that we ‘live within our means.’ In some instances those ‘savings’ will place disabled people in institutions and there is nothing presently in law to prevent it.   In others, people’s support packages have been cut such they risk becoming isolated and segregated from the wider community, including – as in the case of Luke Davey – under the pretense of promoting ‘independence.’

It is important, however, not to regard lack of respect for disabled people’s right to independent living solely as a consequence of austerity. While the State – national and local – may no longer build or operate archetypical institutions (outside the area of acute psychiatric care) institutional care continues to be developed by private businesses, for profit, with the support of local authority and NHS Commissioners, with places paid for by the State at often exorbitant cost.   The recent General Comment on the right to live independently and to be included in the community by the UN Committee on the Rights of Persons with Disabilities states that:

‘States parties should ensure that public or private funds are not spent on maintaining, renovating, establishing, building existing and new institutions in any form of institutionalization. Furthermore, States parties must ensure that private institutions are not established in the guise of “community living”.’

Domestic law appears presently impotent to prevent such developments.

Further, it is clear that the attitude and approach of different public bodies to disabled people’s right to choice and control is not entirely contingent on their financial position. All local councils and Clinical Commissioning Bodies face major challenges in balancing their books, but not all have felt it necessary to do so by reducing the scope of control people have over their support, even of the overall amount of support available has been reduced. Some have seen the extension of choice and control as a way to realise efficiencies, rather than as a cost to be contained.   In other areas, independent living runs up against politics and philosophy that is intrinsically hostile to choice and control, especially in the area of social security and employment support.

Perhaps unsurprisingly then, following its recent examination of the UK’s compliance with the UN Convention on the Rights of Persons with Disabilities, the UN Disability Rights Committee recommended that the UK:

‘Recognise the right to living independently and being included in the community as a subjective right and the enforceability of all its elements and adopt rights-based policies, regulations and guidelines for ensuring implementation’

Their recommendation echoed that of the UK’s Joint Parliamentary Committee on Human Rights which in 2012 recommended that:

‘….all interested parties, governmental and non-governmental, immediately start work on assessing the need for and feasibility of free-standing legislation to give more concrete effect in UK law to the right to independent living.’

 

Attempts to secure legislation on the right to independent living – A brief history

Recent past attempts to win support for an express right to independent living in domestic law have faltered.

  • Disabled Persons (Independent Living) Bill (2005-7)

Drafted by the Disability Rights Commission and sponsored by the late Lord Jack Ashley, the Disabled Persons Independent Living Bill was a Private Members Bill which sought to repeal and replace all previous social care legislation, mixing strategic obligations on government and local councils with specific entitlements to support.   Key features included:

 

  • Duties on national and local government to develop independent living strategies
  • Duties on local councils and NHS bodies to ensure sufficiency of services and supports
  • Duties on local councils and NHS bodies to cooperate, including through pooled funding
  • Right to information and advice
  • Right to self-directed assessment
  • Right to an individual budget
  • Right to choose where and with who to live

While the government did not support the Bill, a number of its features can clearly be traced in the Care Act 2014

  • Independent Living Strategy (2008)

DPO representatives involved in the group that helped draft the last Labour government’s Independent Living Strategy had proposed legislation on the right to independent living. The then government said that it would review the case for legislation in 2013, having evaluated progress against measures to determine whether:

  • disabled people who need support to go about their daily lives had greater choice and control over how support is provided.
  • disabled people had greater access to housing, transport, health, employment, education and leisure opportunities and to participation in family and community life.

On behalf of the Independent Living Strategy Group, Baroness Jane Campbell and Jenny Morris wrote to the then Minister for Disabled People Esther McVeigh in 2013, attaching a review of progress and asking whether the commitment to review the case for legislation would be honoured. The Minister advised that it would not be conducting any further monitoring of the goals in the strategy or giving consideration to legislation.

Joint Parliamentary Committee on Human Rights inquiry into implementation of the right to independent living (2012)

As noted above, following a detailed inquiry into the UK’s implementation of Article 19 of the UNCRPD the Committee concluded that the patchwork of legislation in existence at the time was insufficient to protect the right to independent living. It recommended that government and others explored the case for a freestanding right to independent living following the UNCRPD Committee’s examination of the UK.   The government responded by citing its plans for what became the Care Act 2014

  • Care Act 2014

 

The Law Commission advised government on the content of a proposed Care Bill. It considered whether ‘independent living’ should be included as a statutory principle and concluded:

‘At consultation, a principle based on independent living was often seen as a means of establishing enforceable legal rights to services. In our view, this is not the purpose of statutory principles. Furthermore, this concept is covered adequately by Articles 8 and 19 of the United Nations Convention on the Rights of Persons with Disabilities. We agree that a principle based on an assumption of home-based living would not be suitable to be included as a principle in the statute. The key issue should be the person’s wishes and feelings, and in effect this principle could skew choice in one particular direction.

….We are not persuaded that statutory principles are necessary to promote non- discrimination and human rights. This would simply repeat unnecessarily the provisions of the Equality Act 2010 and the European Convention on Human Rights. There is also a substantial body of case law on the application of anti- discrimination legislation and the European Convention to adult social care. We do not consider that a principle promoting efficiency or equity would be sufficiently precise to be capable of operating as a proposition of law.’

The House of Commons scrutiny Committee on the draft Care Bill agreed with the Law Commission.

The statutory guidance accompanying the Care Act 2014 says that:

1.18 Although not mentioned specifically in the way that wellbeing is defined, the concept of ‘independent living’ is a core part of the wellbeing principle. Section 1 of the Care Act includes matters such as individual’s control of their day-to-day life, suitability of living accommodation, contribution to society – and crucially, requires local authorities to consider each person’s views, wishes, feelings and beliefs.

1.19 The wellbeing principle is intended to cover the key components of independent living, as expressed in the UN Convention on the Rights of People with Disabilities (in particular, Article 19 of the Convention). Supporting people to live as independently as possible, for as long as possible, is a guiding principle of the Care Act. The language used in the Act is intended to be clearer, and focus on the outcomes that truly matter to people, rather than using the relatively abstract term ‘independent living’.

In her analysis of the compliance of the Care Act with the UNCRPD, Tabatha Collingbourne notes:

‘there is no recognition in the Act of a right to live independently and be included in the community; ‘well-being’ remains a principle, not a ‘right’; and the socio-economic elements of Article 19 are not ‘rights’ but ‘welfare’…..provision of the support services essential for the exercise of Article 19 remains vulnerable to retrogression, unmonitored and unenforceable.’

Certainly, the recent case of Davey versus Oxfordshire County Council would seem to confirm these conclusions.

  • The Disabled People (Community Inclusion) Bill (LB Bill) 2015

This proposed Private Members Bill was drafted by the Justice for LB campaign and aimed to strengthen the rights of disabled people to choose where and with who to live and the obligations of local authorities and NHS bodies to create community based alternatives to institutional care.

Unfortunately it has so far proved unsuccessful at ballot and therefore not been heard in Parliament. However, both the campaign and its proposals have influenced other developments including the Law Commission’s review of Deprivation of Liberty Safeguards and government policy, including the ‘No voice unheard, no right ignored – coalition government consultation’ in 2015.

  • Equality and Human Rights Commission

In the light of the UNCRPD Committee’s concluding observations and its own analysis, the Equality and Human Rights Commission is planning to explore options for a statutory right to independent living.

 

How could legislation help and what form might it take?

 The following examples of existing laws are not intended to be exhaustive, but illustrative of how the law might be enhanced to better respect, protect and ensure the right to independent living.   Some might demand standalone legislation, where others could be achieved through the amendment and augmentation of existing law, such as the Care Act 2014.

  • A statutory duty to have ‘due regard’ to the UNCRPD

For example, the ‘Rights of Children and Young Persons (Wales) Measure’ 2011 places a duty on all Welsh Ministers to have due regard to the substantive rights and obligations within the UN Convention on the Rights of the Child and its optional protocols. Section 2 of the Measure requires Ministers to publish a Children’s Rights Scheme which sets out the arrangements Ministers will have in place to have due regard to the UNCRC. Welsh Ministers published their first Children’s Rights Scheme in May 2012 which set out the arrangements for complying with the due regard duty when considering proposed new legislation, proposed new policies and a review of or change to an existing policy and/or legislation.

The duty to have due regard to the UNCRC has been extended further and from May 2014, all Ministers will need to have due regard to the UNCRC when exercising any of their Ministerial functions.

Existing ‘due regard’ duties with relevance to independent living include the Public Sector Equality Duty and the section 1 of the Care Act 2014 (the wellbeing principles).  In addition, the Human Rights Act 1998 demands that Ministers and public bodies must comply with the European Convention on Human Rights.

  • Individually enforceable rights to choice and control over where and with who to live and to support

The proposed Disability Integration Act 2017 in the USA is civil rights legislation to address the fundamental issue that people who need Long Term Services and Supports (LTSS) are forced into institutions and losing their basic civil rights. It states that ‘States, local governments, or insurance providers may not discriminate against such individuals in the provision of community-based services by: (1) imposing prohibited eligibility criteria, cost caps, waiting lists, or payment structures; (2) failing to provide a specific community-based service; or (3) requiring an individual to receive a service in a congregate or disability-specific settings.

The National Disability Insurance Scheme in Australia is specifically framed as a vehicle for giving effect to Australia’s obligations under the UNCRPD. It adopts as national insurance approach to funding support and gives eligible persons the right to an individualised plan, including a ‘statement of participants supports.’   A recent Federal Court case in Australia ruled that the scheme is required to fully fund any supports or services it has deemed “reasonable and necessary” and that it could not partial funding of supports such as transport to the work or service placements set out in a person’s individual care plan

  • Prohibition of public spending on institutional care

In 2013, the EU introduced for the first time ‘ex-ante conditionalities’ that created preconditions for European Social and Investment Funding. These included measures prohibiting use of the ESIF for the maintenance, renovation or construction of residential institutions, while encouraging Member States to prioritise programmes to support the transition from institutional to family or community-based care, where they were determined not yet to have done so.

In the USA, the proposed Disability Integration Act of 2017 would prohibit states or local governments that provide institutional placements for individuals with disabilities who need long-term assistance with daily living activities or health-related tasks, and prohibits insurance providers that fund such long-term services, from denying community-based services that would enable such individuals to live in the community and lead an independent life.

  • Strategic duties and regulations to develop community based living

Regulations concerning use of the European Structural and Investment Funds require that – where needs are identified – Member States include measures in their National Strategic Policy Framework on Poverty Reduction concerning the transition from institutional to community based care.

Annex – links to legislation, draft legislation and relevant publications

 

UN Committee on the Rights of Persons with Disabilities General Comment 5 on the right to live independently and to be included in the community

http://www.ohchr.org/EN/HRBodies/CRPD/Pages/DGCArticle19.aspx

 (Disabled Persons) Independent Living Bill 2007

https://publications.parliament.uk/pa/pabills/200607/disabled_persons_independent_living.htm

The Disabled People (Community Inclusion) Bill

https://lbbill.wordpress.com/draft-lb-bill-v-2/

 Law Commission proposals for social care legislation

https://www.lawcom.gov.uk/project/adult-social-care/

Care Act 2014 statutory guidance

https://www.gov.uk/government/publications/care-act-statutory-guidance

‘Rights of Children and Young Persons (Wales) Measure’ 2011

http://www.legislation.gov.uk/mwa/2011/2/contents

The Disability Integration Act 2017 USA

http://www.disabilityintegrationact.org

European Structural and Investment Funds regulations

https://communitylivingforeurope.org/exanteconditionality/

 National Disability Insurance Scheme Australia

https://www.legislation.gov.au/Details/C2013A00020

 Joint Committee on Human Rights report on the right to independent living

https://publications.parliament.uk/pa/jt201012/jtselect/jtrights/257/25706.htm#a13

UN Committee on the Rights of Persons with Disabilities concluding observations following its examination of the United Kingdom in 2017

http://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=21993&LangID=E

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