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Somebody could just take you away

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NHS staff can decide where disabled people live, even against their choice.

By Fleur Perry.

The 1970s saw the start (give or take) of the disabled people’s movement in the UK, with the publication of the Policy Statement of the Union of Physically Impaired Segregation (UPIAS) in 1974.

Forgiving the outdated language, I like this bit: “The Union’s eventual object is to achieve a situation where as physically impaired people we all have the means to choose where and how we wish to live.”

It also talks of “flights of steps, inadequate public and personal transport, unsuitable housing, rigid work routines in factories and offices, and a lack of up-to-date aids and equipment.” Doesn’t sound too unfamiliar really, though there has thankfully been some significant progress.

Over time, disabled people won the right to use public transport, to expect to be served at the shops, and most importantly, to live in their local communities. Or so we thought.

Many of the problems with exercising these rights are practical. If your shop has a step and you forgot that the Equality Act 2010 means you probably should have got a ramp by now, then my money stays in my purse. If all the houses in a community have stairs, steps and really narrow doorways, then I’m not going to move there.

It’s not always a matter of rebuilding stuff or adding a few minor adjustments. There are deeper causes and worse consequences.

A few months ago, the internet was abuzz in horror at Southampton Clinical Commissioning Group’s Continuing Healthcare Choice and Equity Policy. Southampton Clinical Commissioning Group (CCG) had seemed to suggest that people could be moved from their own homes into a residential facility without their consent, for no reason other than it would cost less.

This would not need to be on the condition of minimising the impact of doing this on the person’s health, or the location of the facility comparative to the person’s family, friends, and sources of support, and could breach current national and international Human Rights legislation.

Somebody who has never met the person in question can sign a bit of paper and change everything about a person’s way of life. They could read a summary of a person’s medical needs, look at the cost, decide where they’re going, send a letter, have a taxi arranged and that would be the end of the matter. It wouldn’t make a difference whether the person was happy be moved or not, or whether their health needs were well provided for in their own home.

I wondered: was this an isolated case? The media statement from Southampton CCG had a surprised tone, however; it suggested that there may be other areas with the same idea. Disabled People Againts Cuts (DPAC) reliably informed us that they had evidence that a handful of other Clinical Commissioning Groups used similar policies.

A bucket load of Freedom of Information (FoI) Requests  later, policy after policy leafed through, and we have the results.

FoIs sent to: 212

Replies received from: 122

Number using their own policy instead of the National Framework: 53

Number with policies which containing phrases that could be considered concerning: 44

This means that 83 per cent of Clinical Commissioning Groups with their own policy seem to believe they have the right to move people from their homes.

Here’s our findings in full. Please click here to access the XLS file.

One of the most basic human rights, to live where and with who you choose, has been fought for since 1974 and still has not been realised.

True, the Human Rights Act could in theory be used to protect individuals, but there has not yet been a case of this type taken through the courts, so at present the legality of this scenario is debatable.

True, I hear you say, the NHS is under considerable pressure financially and something has to give, but I believe that in the long term, good support costs less than bad, and would happily data-wrestle anyone who says otherwise.

I would also question to what extent the ramifications on Continuing Healthcare of the closure of the Independent Living Fund and the squeeze on the Adult Social Care budget were debated and taken into account before such decisions were made.

But it’s not about whether it’s legal, or about the sums. It’s about the alarming idea that somebody else could take you away from the home, friends and family you care about.

We intend to write to the CCGs in question and to the NHS Continuing Healthcare Policy Team.

If anyone has been directly affected by this issue, please contact editor@disabilityunited.co.uk

A version of this article appeared on the DisabilityUnited website on 10 January 2017.

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