I’m fascinated and inspired in equal measure by the US Disability Integration Act (DIA), currently making its way through the US Senate and Congress and enjoying high level political support from among others Democratic Party Presidential nominee Hillary Clinton.
It has many similarities to the LB Bill, with its core purpose being to:
‘clarify that every individual who is eligible for long-term services and supports has a Federally protected right to be meaningfully integrated into that individual’s community and receive community-based long-term services and supports’
The US has yet to ratify the UN Convention on the Rights of Persons with Disabilities, but the DIA in essence implements Article 19 of the CRPD – living independently and being included in the community. However, the starting point with the DIA is the Americans with Disabilities Act 1990 (ADA). As the preamble to the DIA notes:
‘In enacting the Americans with Disabilities Act of 1990 (referred to in this Act as the “ADA”), Congress—
(A) recognized that “historically, society has tended to isolate and segregate individuals with disabilities, and, despite some improvements, such forms of discrimination against individuals with disabilities continue to be a serious and pervasive social problem”; and
(B) intended that the ADA assure “full participation” and “independent living” for individuals with disabilities by addressing “discrimination against individuals with disabilities [that] persists in critical areas”, including institutionalization.’
Most critically for me, the preamble goes on to say that:
‘The right to live in the community is necessary for the exercise of the civil rights that the ADA was intended to secure for all individuals with disabilities. The lack of adequate community-based services and supports has imperiled the civil rights of all individuals with disabilities, and has undermined the very promise of the ADA. It is, therefore, necessary to recognize in statute a robust and fully articulated right to community living.’
To solve this, the DIA proposes:
‘(1) to clarify and strengthen the ADA’s integration mandate in a manner that accelerates State compliance;
(2) to clarify that every individual who is eligible for long-term services and supports has a Federally protected right to be meaningfully integrated into that individual’s community and receive community-based long-term services and supports;
(3) to ensure that States provide long-term services and supports to individuals with disabilities in a manner that allows individuals with disabilities to live in the most integrated setting, including the individual’s own home, have maximum control over their services and supports, and ensure that long-term services and supports are provided in a manner that allows individuals with disabilities to lead an independent life;’
Five years after President George Bush Snr signed the ADA into law – and 14 years before the UK ratified the UNCRPD – the UK introduced the first Disability Discrimination Act (DDA) 1995. Flawed though that first Act was, it signaled a major breakthrough for those who had campaigned for ‘full civil rights for disabled people’ just as the ADA had done in the US (and other similar law such as the Australia DDA had elsewhere). In doing so it suggested a major political and cultural shift regarding the principles and intention of public policy regarding disabled people.
In the subsequent decade, many of the original gaps in the DDA were closed – all employers were brought within its scope, as was education, transport, housing and public functions. An enforcement body was established. The 2005 Disability Discrimination Act included a proactive duty on public bodies to eliminate discrimination and to promote equality. In 2010, the Disability Discrimination Act was largely incorporated into the Equality Act 2010, which included a Public Sector Equality Duty.
Yet, while it is true that government is required to comply with equality law (and the European Convention on Human Rights) when making new laws, it has never felt to me that the fundamental principles of disability rights – that people have a right to independent living, to inclusion and to participate fully in all spheres of life without discrimination – have been the starting point when it comes to designing policy and legislation regarding the financial or practical supports that some disabled people require to make those rights a lived reality. In fact, there is evidence that these principles have been rejected outright.
The Law Commission, in considering options for legislation that came to shape the Care Act 2014 responded to proposals to incorporate Article 19 of the CRPD into the Act as follows:
‘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’
In effect the Law Commission advised the government to ignore the requirements of international law to which it had only a few years earlier agreed to be bound. Hence the ‘well-being’ principles in the Care Act fail sufficiently to reflect the principles of independent living, inclusion and the right to full participation that form the foundation stones of the UNCRPD and disability rights more generally.
While I am not bang up to date on education law, I expect the same can be said for supports for disabled children, which remain predicated on ‘meeting needs’ not on supporting full participation in inclusive educational life. That is to say, the ‘promise’ of the DDA has not embedded itself in the way that other policy and legislation of instrumental importance to disabled people’s human and civil rights are conceived of or designed. With some notable exceptions, such as Access to Work or Disabled Students Allowance, much of the web of financial and practical assistance on offer to disabled people remains rooted in a ‘needs based’ rather than rights-based model of disability.
The Care Act is as a consequence insufficient to meet the requirements of the UNCRPD in statute and – because it includes nothing to ensure sufficient energy and resources are committed to supporting people to live independently in the community – in practice also, especially in the context of the massive cuts in local council budgets. For example, it includes no equivalent obligation to that proposed in the DIA:
‘to establish a comprehensive State planning requirement that includes enforceable, measurable objectives that are designed to transition individuals with all types of disabilities at all ages out of institutions and into the most integrated setting’
What fascinates me so much about the Disability Integration Bill in the US is not just its specific provisions but that it does take as its starting point the promise of full civil rights in the ADA. As such its purpose is to extend civil rights to those denied them by virtue of their institutionalisation via steps to ensure adequacy of support for community based living.
In Britian, the narrative included in the preamble to the DIA would go something like this:
‘In enacting the Disability Discrimination Acts of 1995 and 2005 and their successor the Equality Act 2010 Parliament intended that the law ensured full participation and inclusion for disabled people. The right to live in the community is necessary to the exercise of civil rights that our body of equality law is intended to secure for all individuals. Moreover, the UK as a Party to the United Nations Convention on the Rights of Persons with Disabilities has undertaken to ensure that disabled people can live independently to be fully included in the community. The lack of adequate community based services and supports has and continues to imperil the human and civil rights of all disabled people and has undermined the very promise of our equality law. While containing important and valuable provisions, the Care Act 2014 fails to fully accord with these principles or to provide sufficiently robust guarantees that they will be ensured in practice. It is therefore necessary to recognise in statute a robust and fully articulated right to community living.’
In practice this would see resources committed to social care explicitly directed towards the end of securing and supporting full civil and human rights for disabled people. In doing so, the current major shortcomings of public policy and spending on care and support would be fully revealed (a reason it probably won’t happen soon). Applying this same provision to support for disabled children and young people both in education and wider life would have similar implications (and may be similarly resisted).
But…. while the DDA was undoubtedly the achievement of British disability campaigners and their allies in Parliament, the ADA had a massive impact in Britain and internationally. It was not only a legal template, it was even more so a political and cultural template for how States should treat their disabled citizens. The US has arrived at a point where – even if the DIA does not become law this time around – it recognizes that the inadequacies of public services deny many of its citizens their civil rights and that this is a sufficient basis to legislate for, in effect, progressive social rights.
Just as the ADA changed the world, I hope the DIA gives us reasons to be optimistic once again.