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Is Warehousing Disabled People Becoming An Acceptable Proposition

If you had asked me a couple of years ago how the fight for equal rights for disabled people was going I would probably have said “Slowly, but inexorably moving in the right direction”.  However today the same enquiry would probably elicit a very different response.

I believe that a political climate has developed where it is possible to put forward views that only a couple of years ago would have been beyond the pale.  One of the most personally frightening of these is the current discussion about when it becomes too expensive to enable disabled people to live independent lives in their own homes?

While it may feel like the “age of austerity” has been going on forever, we are in truth only at the beginning of the process.  There are still swingeing cuts in public spending coming over the next couple of years and there are no plans to protect spending on disabled people.  I believe that the ground has been prepared for the rollback of the hard-won gains that disabled people have made in the Independent Living Movement to such an extent that it is realistic to talk of the return of “warehousing” disabled people in institutions rather than supporting them to live independently in the community.

It started with talk of “benefit scroungers” which prefaced the changes from Disability Living Allowance to Personal Independent Payments and the introduction of Employment and Support Allowance.  The stories of the outrageous way in which disabled people were treated under these changes are all too familiar.  Then the government did away with the Independent Living Fund but refused to ring fence the money for the ongoing care and support of disabled people in the community.  That inevitably lead to reductions in social care provision and now we are seeing the NHS following suit.

A recent Freedom of information request by the campaign group Disability United found that at least 37 NHS Clinical Commissioning Groups (CCGs) in England are introducing arbitrary financial limits on the amount they are prepared to spend on care and support to keep disabled people living in their own homes.  Effectively CCGs will say to disabled people who need care and support “This is all the money we are prepared to spend on you and if you can’t manage [by either relying on your friends and family or coughing up the balance of what you need to live safely] it’s off to a residential care home for you!”.  Up until now these policies have primarily been applied to newly SCI people.  So on top of dealing with the life changing effect of SCI newly injured people are having to fight tooth and nail for the “privilege” of going home after rehab.  The situation for those who aren’t lucky enough to get into a specialist SCI Centre is even worse.

However, this has meant that those of us already living independently in the community have not been directly affected.  Our focus has, naturally, been on protecting our position and our independence.  But things are changing.  Now the policies being introduced will apply retrospectively, so when our care and support is reviewed we will be subjected to the same arbitrary financial caps.

It puts me in mind of Martin Niemöller’s warning:

“First they came for the Socialists, and I did not speak out –
Because I was not a socialist.

Then they came for the Trade Unionists, and I did not speak out –
Because I was not a Trade Unionist.

Then they came for the Jews, and I did not speak out –
Because I was not a Jew.

Then they came for me – and there was no one left to speak for me”

In 1974 our founder Baroness Masham of Ilton set up SIA because of the lack of support for spinal cord injured people to live in, and participate as full members of, society.  Over the years we have campaigned and fought many hard battles to secure the essential specialised support that we need.  As a result many of us live full and fulfilling lives with families, jobs, travel opportunities etc.  In short, lives worth living.

I believe that we need to be extremely wary of taking these lives for granted.  I believe that there is a very real and existential threat on the horizon.  The harsh reality is that for the vast majority of the population “disability” and “care homes” goes together like, as Forrest Gump would say, “peas” and “carrots”.  If I’m honest, before I became SCI, the little thought I had given the matter certainly didn’t lead me to challenge that received opinion.  This demands a question – if we don’t speak up for ourselves then who will?

Campaigning for the rights of and support for SCI people is in the very DNA of the Spinal Injuries Association.  We occupy a unique place in the community of disabled people.  As most of us have direct experience of living both with and without disability, we understand with greater clarity than most when we are being denied access and independence.  Consequently, the SCI community has always been at the forefront of the fight for independent living and disability equality, with individual luminaries such as Mike Oliver and Vic Finkelstein coming from within our own ranks to inform and shape the debate and win the argument.

However, while we have undoubtedly made progress over the last 30 years we cannot afford to abandon the barricades now.  It is up to us to defend our independent lives – not only for our own sakes but for the sakes of those who will follow.

When they “come for you” will you be prepared?

If you would like to become involved with SIA’s campaigning activities contact [email protected]  or call 01908 604191.

Brian O’Shea
SIA Continuing Healthcare Advisor

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