In an article published on Monday in the Guardian newspaper in the UK, Beverly Angell explains how her 54-year old sister has lived in a 26-bedded residential care home run by the charity Scope for the last 38 years. She advises Scope against shutting the institution, for fear that its residents will become homeless or will not get the support they need. In a video petition, other relatives say that “living independently is not an option, it will be cruel, it’s unrealistic.” They argue that their disabled relatives need “the sociable, happy life they’ve got now.”
Ms Angell says the UN Convention on the Rights of Persons with Disabilities (CRPD) is to blame as it has, apparently, led charities to seek to move people with disabilities from residential institutions into the community, which is done with little regard to the impact on the individuals concerned. Her fears around the closure of institutions are understandable – no one wants to see people with disabilities left to fend for themselves without access to support, social networks, friendships or the means to make choices in their own lives. Yet this is far from what the CRPD is all about.
Under Article 19 of the CRPD, everyone has the right to live where and with whom they want and should not be obliged to live in a particular arrangement. Of course, “choice” within the context of scarce housing and community support services may be limited but Article 19 requires governments to ensure that everyone with disabilities has “access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation”. Services should be made available and accessible to people with disabilities, the Convention says, to include things like housing stock and public transportation.
Scope is concerned that people are segregated from the community in institutions like Hampton House. Relatives are worried that their disabled loved ones will be isolated from the community as a consequence of institutions like Hampton House closing. The CRPD was designed to guard against both segregation and isolation: both are anathema to inclusion and participation in society. Yes, it’s true that the CRPD requires institutions to be closed down. But at the same time – and even before that – it requires governments to take actions within communities to enable people to participate in social life, by creating and maintaining the social bonds that many people without disabilities all take for granted.
Moving from a custodial model of care epitomised by institutions such as Hampton House to a supportive model of independent living takes investment and innovation. And it takes political will, which in the UK is lacking. The Joint Committee on Human Rights concluded in 2012 that there is “a significant risk of retrogression of independent living and a breach of the UK's Article 19 obligations” resulting from the government’s decisions. The Joint Committee’s concerns echo those expressed elsewhere in Europe. Following a visit to Spain last year, the Council of Europe Commissioner on Human Rights warned that, “budgetary restrictions should not lead to depriving persons with disabilities of the enjoyment of their human rights and to furthering their marginalisation.”
In this context everyone can empathise with Ms Angell about the future of her sister and of other people with disabilities. But however much empathy we feel should not allow the British and other governments to renege on their independent living obligations. Events such as the ill-treatment of people with learning disabilities in a Bristol institution in 2011 or the preventable death of 18-year-old Connor Sparrowhawk in an NHS unit last year show that institutions are not necessarily the “safe little nest” which a relative of a Hampton House resident described. And even where such institutions purportedly offer safety, the questions are: safety from what, at what cost, and to whom?
Two years ago the Joint Committee concluded that the government was “unable to demonstrate that sufficient regard has been paid to the Convention in the development of policy with direct relevance to the lives of disabled people”. There has been little sign of improvement since. If the right to independent living is framed solely around a disagreement between Scope and the Hampton House relatives, it’s people with disabilities who will lose out, and it’s the government that will be left off the hook.