Written by Cherylee Houston

In The News

Let’s not resign disabled people to this fate

Iain Duncan Smith’s decision to step down over cuts to services to the disabled community has won him some praise. But, as Cherylee Houston tells us, it’s too little too late for many people struggling to cope with reduced support.

wheelchair user“While they are defensible in narrow terms, given the continuing deficit, they are not defensible in the way they were placed within a budget that benefits higher earnings taxpayers.” Iain Duncan Smith, 18 March 2016

How ‘narrow’ do the terms have to be to make disabled people choose between food and heat?

The problem with systematic bullying is that it can go on undetected for years. And it’s only now that a crowd has gathered to see our heads against the floor and the boot coming in for one final big kick that someone in the gang has had to take the fall for the punishment. And while it is the one wearing the boot, the rest of the gang are still here, hoping previous misdemeanours will go unnoticed.

Iain Duncan Smith’s department has created a world in which disabled people are told to work, while simultaneously removing the provision that enables us to do so.

Like all bullying it started quietly, against those who can’t fight back. Among the first victims were people living in care homes who had the mobility part of their Disability Living Allowance (DLA) taken away. Those whose care homes had a minibus to take people to their life outside those gates were the lucky ones. Everyone else lost their freedom.

Elsewhere those with disabilities such as autism lost their talking care, something essential for guiding them through social engagements, volunteering, dressing, washing, and eating. People are dying – something which is under-reported in the media – because of this enforced personal neglect.

“Before, if you couldn’t walk more than 50 metres you qualified for enhanced mobility. Now it’s 20 metres. How does a radius of an extra 30 metres give you any more quality of life?”

Disability Living Allowance used to be awarded according to three qualification levels: lower, middle and higher. This is being switched to Personal Independence Payments (PIP). PIP consists merely of two levels, immediately excluding those with ‘lower’ levels of need. Those who still qualify are put through rigorous tests – often far from our homes.

If you can’t attend, you automatically no longer qualify. One case involved someone in a lot of pain having to travel more than 60 miles to an assessment, laid in the back of a car which got stuck in traffic for six hours. They missed their appointment but were told not to reapply because, apparently, if you can be in a car for six hours you obviously qualify for work.

Can you lift a cardboard box above your head? Yes? Then you can work. If you can put a fork in a ready meal or a straw in a carton of Complan you no longer qualify for assistance with food preparation. Before, if you couldn’t walk more than 50 metres you qualified for enhanced mobility. Now it’s 20 metres. How does a radius of an extra 30 metres give you any more quality of life?

Then there’s the direct impact on Motability, the fund to help provide transport or accessible vehicles where there are none. Motability removed more than 100,000 cars from people last year alone, isolating disabled people and taking away their ability to contribute to their families and societies in the same way. Our lifelines were sold off in car showrooms around the country for profit.

After years of fighting for equality we’re back to campaigning for basic rights or managing the prison within which we sit. The only difference being that real prisoners have a panic button – someone will come when you call for help.

Access to Work – the fund which provides support in the workplace – was really effective. For every £1 spent £1.42 came back into the economy. This has now been capped and the criteria for successful application tightened.

Then there’s the one that makes me weep: The Independent Living Fund. In living memory we began to escape the care homes we had been locked up in, to take jobs, volunteer, and impact positively on the neighbourhoods around us.

We started to do things like the rest of you did – make the front of our homes nice, garden, open our post, pop to meet a friend on an impromptu whim, explore hobbies, volunteer, choose our own meals, decide what time to get up, go to bed, and when to be frivolous.

“Many councils have offered the provision of incontinence pants as a solution to toileting needs. Not for people who are incontinent, but for people who will have to make a conscious decision to soil themselves in full knowledge of how many hours it will be until care arrives.”

We earned the right for buildings to be designed with us in mind and for transport to occasionally allow us on with the rest of you. We even gained the right to higher education. This is only in the last 30 years and now we’re on your TV screens and you’re reading an article written by one of us about how we’ve been treated.

Then, overnight, on 30 June last year, 17,600 people went from receiving full-time care to something else. In many cases, losing 50+ hours a week and overnight assistance. Hours that were a lifeline, hours that ensured we could live our lives. That care was cut and funding instead went – without a ringfence – to local councils whose care budgets had been slashed by 33 per cent.

Anyone disabled by an accident will no longer be supported in their own home and our disabled children with high support needs will never have the opportunity to live independently. They will have a lifetime of being ‘looked after’ by family or living in residential care.

In Manchester now they can only offer us help to get up, wash, dress and have five toilet breaks a day before being put back to bed at a prescribed time. Oh and the preparation of a ready meal for our sustenance. Gone is our help for shopping, cleaning, washing of clothes, popping to the shop for the thing you forgot or sorting the post behind your door that you can’t pick up or open.

Again, none of this even makes financial sense: the average cost of ILF at £345 per week is less than half of that of the average cost of residential care at £738 per week. The ILF cost around £320m a year to run: less than 1 per cent of the uncollected tax for 2012/2013.

A few weeks ago, I met a woman in her late 20s, sitting in her wheelchair in her single bedroom where she spends her life, her only choice of outside activity being a day centre. She has no option to go to study, work, volunteer, walk in a park or feel the sun on her face. She is a prisoner in her own home – washed, fed and personally presentable (which no one will ever see because there is no care provision for outside of the home in Manchester).

What is available depends upon a postcode lottery. Brighton and Manchester are among many councils who have offered the provision of incontinence pants as a solution (for grown adults in 21st-century Britain) to toileting needs. Not for people who are incontinent, but for people who will have to make a conscious decision to soil themselves in full knowledge of how many hours it will be until care arrives while they lie in their own excrement or urine.

“Only last month a pregnant friend discussed the tests for disability in a different light: that of the responsibility of bringing a child into a world where there was no support for an independent life.”

There are 25-year-olds who are put to bed at eight o’clock and teenagers who have had to have their parents move to university with them to provide their care. Parents of young children who need continual observation overnight no longer have that care so sacrifice their own sleep. The portable hoist – provision for outside the house for, say, a severely disabled seven-year-old – is no longer deemed a necessity. The blind quadriplegic man who received 24hr care for 18 years, now expected to cope with just eleven hours a week.

Where are these “increased resources that are being spent on disabled people” that Cameron mentioned in his response to IDS’s resignation letter? This week a Facebook post was read to me from a friend of a woman whose carer had just spent the evening talking her down from her windowsill when the House of Lords no longer opposed IDS’s changes to PIP.

Only last month a pregnant friend discussed the tests for disability in a different light: that of the responsibility of bringing a child into a world where there was no support for an independent life.

So these cuts have begun to affect us before we are even born. The cull is happening and my fear is that one of the bullies holding his hands up for no more is a weapon to silence the upsurge of our anger. Don’t see this as disabled people winning. The torment has temporarily halted, that’s all. We still need the belongings back that the bullies cruelly snatched and we’re looking over our shoulders, worried as to from which angle they will pounce on us next.

@cheryleehouston

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Written by Cherylee Houston

Actress, writer and stick things on thingser.

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