Friday, 9 January 2015

There is only one thing worse than the denial of disabled people’s human rights and that is that no-one notices


On 6th January, disabled people who currently receive an Independent Living Fund grant, and their supporters, staged the latest in a series of protests against the closure of the Fund (scheduled for June this year). They are amongst the 18,000 or so people who rely on the ILF to enable them to live ordinary lives in their own homes. 

The ILF existed to ‘top up’ the funding available from local authorities, in recognition that those with the highest levels of support needs require assistance which local authorities could not provide.  Although funding will be transferred to local authorities from the ILF when it closes in June, this funding will be less than that currently required to support ILF users.  

Everyone involved - from government through to disabled people themselves - knows that the amount of money to be transferred is not sufficient to continue supporting the same numbers of people at the same levels which they currently receive. Government and local authorities alike have recognised that this will mean that personal budgets will be lower than the amount individuals currently receive. 

The ILF closed to new applicants in 2010 and we do not know how many people, who would previously have received an ILF grant, are currently either struggling to cope with insufficient support at home, or have been forced into residential care, or whose family members’ lives are unacceptably restricted by their caring role. We do know that many people with significant learning disabilities and/or autism are being admitted to so-called Assessment and Treatment Units; that people with 'severe learning disabilities' are the largest group of ILF recipients; and that despite a government commitment to move people out of such units more are still being admitted than are leaving. We do know that such short-term placements can turn into years of sometimes inhumane or neglectful treatment; that people in such Units can die unnecessarily; and that it is proving more and more difficult to support people to live in their own homes.  

No-one has monitored the impact of the closure of the ILF to new applicants over the last five years.  And it looks as if no-one will monitor what happens to current ILF users when the transfer of inadequate funding happens in June. Baroness Jane Campbell urged the government, last March, to monitor what happens to them and expressed her concern that local authorities will “fail to meet 21st-century rights of disabled people to independent living, as articulated in …..the UN Convention on the Rights of Persons with Disabilities.” 

The problem is that the legislative framework for delivery of support is underpinned by ‘welfare’ not rights.  The Care Act and the statutory guidance which accompanies it, as Tabitha Collingbourne identifies, are severely limited by the fact that the principles and outcomes set out there, while welcome, are unsupported by enforceable individual rights. 

This opens the door for local authorities to reduce the amount of support received by people who are currently funded by the Independent Living Fund.  The Association of Directors of Adult Social Services has explicitly stated that such reductions in funding are likely to occur and the Care Act guidance itself assumes that this will lead to some people having to sack or reduce the hours of support workers who they currently employ to help them go about their daily lives.

A lack of individual rights means that a disabled person can be denied the help they need to go to the toilet. It means that the level of support to live at home can be so insufficient that the only alternative is residential care. It means that people can be denied the support they need in order to work, to attend college, to look after their children, to participate in their family and community. 

We need to document what happens, not only to people who currently use ILF funding but also to those who would previously have been able to apply for it. There is only one thing worse than the denial of disabled people’s human rights and that is that no-one notices.

2 comments:

  1. Hi Jenny, I completely agree on the need for documenting the change. As part of our ESRC PA Relationships project at UEA, we will be interviewing a group of ILF recipients in two East Anglian and one London local authority area. We will conduct follow up interviews with them in June, when their new LA support packages are known. We will publish the results by the end of June.

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  2. Thanks for this thorough breakdown between SSDI and SSI, and where a person with a disease such as melanoma can fit into the picture. Ultimately, these benefits should be guaranteed for those with such conditions, and that an employee is allowed to be in a position to acquire them. It would be a shame if people were disqualified due to technicalities, depriving them of the much-needed support.

    Tyron Tanaka @ Low And Canata

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