A right to independent living has never made more sense

On 1 March the Joint Committee on Human Rights, launched its report of the year-long enquiry into article 19, the Right to Independent Living. Why, when the UK has been considered a world leader in this field, did I as a member of the committee, call for the Inquiry as a matter of urgency?

In too many parts of the world, including Europe, disabled people cannot exercise the same freedoms to live with safely and dignity. In many cases they are obliged to live In institutions or situations, isolated and excluded from the main community, making their circumstances extremely vulnerable.

Thankfully, such practice no longer characterised the general situation in the UK. Successive governments have worked alongside disabled people over the past three decades to build a framework of independent living support, necessary to bring disabled people out from behind closed doors and participating as active citizens. The Equality Act, Direct Payments, the ILF And the Right to Control, have combined to create circumstances possible for equality and human rights to mean something real to disabled people. Basic rights; a right to family life, freedom to come and go without asking permission, privacy. All these fundamental rights that UK citizens take for granted, many of us simply dreamt of.

The UK has become a world leader in public policy and legislation which has begun to place more power in the hands of disabled people to assume control over their own lives and to be included in all areas of life.  This has been transformative for many – including myself - offering life opportunities thought impossible only two generations ago.  

Independent living has not come without investment, cross government collaboration and cross-party support. Alarmingly, the past few years have witnessed a storm of national and local public policy and spending decisions directly associated with disabled people’s opportunities to live independently and to be included in the community.   Hence the Joint Parliamentary Committee on Human Rights (JCHR) agreed it was an important moment to take stock of the progress the UK is making in implementing Article 19 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).  Article 19 requires that the UK Government, and the devolved administrations, take steps to ensure that disabled people enjoy equal rights to others to choose where and with who to live, that they are not obliged to live in a particular living arrangement and are not segregated or isolated from the wider community. 

Worryingly, we found little evidence of Article 19 having been given due consideration in decisions which taken together will transform, for good or ill, the enjoyment of the right to independent living in the UK.  This includes measures to reform Disability Living Allowance and Housing Benefit, the decision to close the Independent Living Fund, local authority’s restricting eligibility for social care to ‘critical or substantial’ only. In addition changes to the operation of the Public Sector Equality Duty in England which, unlike its predecessor the Disability Equality Duty, no longer requires public authorities to involve disabled people. As the last 30 years of progress on independent living was largely due to involving disabled people in the solutions to their dependency and exclusion, this was raised as a significant setback.

This lack of regard to the Convention, coupled with the potentially retrogressive impact of these reforms, risks placing the UK in breach of its international obligations.   Disabled people who gave evidence to us expressed real fears about the future.    People who live in their own homes and hold down jobs, fear having to give up work and move into residential institutions.  Couples fear that they will be forced to live apart because they will lose the support that enables them to live together.  Young disabled people who have their own place with support from personal assistants fear having to move back to live with their parents, abandoning university degrees and hopes for securing paid employment.

As the evidence sessions progressed, I was struck by the absence of systematic government identification of these risks. 

It is for this reason that we recommend today, that the Government matches the commitment it has made in relation to the UN Convention on the Rights of the Child to give due consideration to the UNCRPD when making new policy and legislation.  We also recommend that disabled people should be fully involved in decisions affecting their lives, including in articulating a new national Disability Strategy.

We have concluded that there are inadequate legal safeguards to protect and promote the right to independent living.   We reject the reasoning of the Law Commission which counselled against the inclusion of independent living as a key outcome in reformed community care statute, and believe the goals of Article 19 – to ensure people have choice and control and do not become isolated or segregated from the wider community – are entirely consistent with what a modern social care statute should aim to achieve.  But living independently and being included in the community engages a broader range of actors than adult social care, including housing, planning and leisure departments, employment agencies and education bodies.   Hence we also recommend active consideration be given to a freestanding law to protect and promote the right to independent living. 

In times of austerity we should be doing everything in our power to make smart spending decisions and policy which optimise positive social and economic outcomes.  Ensuring that disabled people and their families can live independently and be included in the community is good economics at a time when we should be striving to minimise avoidable ill-health, premature institutionalisation and welfare dependency. 

Independent living has never made more sense.

Baroness Jane Campbell.