Two years ago this week two important things happened that have had a big impact on my life.
The first was finding out about a government scheme called Access to Work which provides support to disabled people at work.
The second, which has cast a shadow of dread over every aspect of my life and the lives of millions of others, was the change of government.
I have Tourettes Syndrome, a neurological condition that means I make involuntary movements and noises called tics that affect every aspect of my life.
While my vocal tics present problems of their own, the uncontrollable movements I make have the biggest impact on my life. My leg tics mean I’m unable to walk anywhere without support and my arm tics make even simple tasks such as eating and drinking chaotic and dangerous. And for the last six months, up to eight times a day, my tics intensify and I drop to the floor having what looks very much like an epileptic fit. During these episodes I need constant supervision to prevent me from injuring myself.
As a disabled person my continued wellbeing depends heavily on a number of government schemes and services. Over the last two years many of these vital services have been under constant threat.
The support I get from Access to Work means, despite the severity of my tics, I’m able to keep doing the full-time job I love and which I’m good at.
Disabled people are right to feel like the hardest hit by the coalition’s relentless cuts. On the national level there’s the planned abolition of Disability Living Allowance – a move designed to make 500,000 disabled people ineligible for basic support – or the Health Bill, which will privatise the NHS by the back door and make it harder for disabled people to access the services they need. And the brutal cuts continue at a local level effecting countless crucial frontline services.
Work and Pensions Secretary Ian Duncan Smith told The Telegraph that he’s ‘not scared to light the fuse on disability reform.’ He plans to cut how much is spent on DLA by 20% and claims the ‘system is riddled with abuse and fraud.’ Of course, this isn’t substantiated by studies that estimate fraudulent DLA claims make up about 0.5% of the total cost. But we shouldn’t let facts get in the way of cuts should we?
Reading Ian Duncan Smith’s view on disability is shocking; it’s out-dated, provocative and dangerous. He criticises the current DLA assessment process (which is based on the completion of a comprehensive from and evidence from a person’s doctor) for not being rigorous enough, yet he’s prepared to make sweeping statements about who will and who won’t be eligible to receive it.
This reveals a deplorable ignorance. If you have a learning disability, a mental health condition or an unseen disability, watch out! Dr Duncan thinks your challenges are just the result of ‘judicial activism’ widening the definition of disability.
This would be laughable if he wasn’t set on destroying a system that helps disabled people meet the many additional costs of living with their conditions
Mr Smith shouldn’t consider himself brave for lighting the fuse on disability reform. What he’s doing is terrifyingly stupid and threatens to destroy lives as well as decades of work spent building equality.
These cuts are deeply unpopular. There have been online campaigns, historic marches, compelling testimonies and the Spartacus Report in response. But the voices of vast numbers of people, professionals and organisations have been ignored.
As the headlines fade and the proposals start being implemented, the lives of many people are quietly getting more difficult. Here’s a tiny glimpse of how:
Our social service departments are meant to protect vulnerable children and adults. But teams are being severely reduced as a result of slashed Local Authority budgets.
Fewer social workers mean many people are not getting the support they desperately need. Lots of the changes are subtle and will have gone unnoticed except by those directly affected. For example, many child and adult disability teams have tightened the criteria for providing support. This has meant disabled people who would’ve and should’ve been helped two years ago now have nothing, leaving them alone and at risk.
I know first hand the incredible difference good social care can make. When I’ve felt most desperate my social worker has provided solutions quickly and creatively. Her skill has kept me safe and prevented me needing more costly help further down the line.
Very soon I won’t be able to call her directly. Instead I’ll have to speak to an untrained worker at a call centre who doesn’t know me and is reading from a script. Tourettes and call centres don’t mix.
Two months ago I wrote an open letter to the Prime Minister describing my concerns about his destructive plans for the NHS. Eventually I received a four-line reply from his office, and last week a more detailed letter arrived from the Department of Health.
This letter started badly, with an apology to me for my own condition – “I was sorry to read that you have Tourettes Syndrome.” The rest of it was largely unrelated to the specific concerns I’d carefully detailed in my letter.
It was so bad in fact, one paragraph made me laugh out loud. It stated, ‘The balance of power and responsibility in the NHS will fundamentally shift.’ For a moment I thought I was getting an honest response about how radically power will be transferred into private hands – but I wasn’t. The claim was that it would shift to clinicians, when it’s clear from clinicians this is not the case.
If you think this is just a wild conspiracy theory, look at what’s happened to the people of Surrey; their entire healthcare system is now provided by Virgin. A deal back in March worth £500,000,000 means Surrey’s doctors, nurses, porters and physios no longer work for the NHS but for Richard Branson.
Some of the changes that have already happened seem deliberately designed to drive down the quality of care. For example in the last few months, waiting time targets have been scrapped, the number of training posts for doctors has been cut and consultants have lost the four hours a week they used to have for research.
I’m apprehensive about these changes (and many others) because they threaten to gnaw away at the quality of healthcare for us all. This is bad for patients and weakens the system making it easier to hand over to private companies in future.
The Health Service keeps me safe, secure and as independent as possible. I’ve been shown incredible compassion and care by NHS professionals and my fear is that in another two years this precious institution will itself be in a critical condition.
You may not agree, but I hope you’d want to ensure that people who need help are not left without it.
For those who think none of this affects them, think again. Disability and ill health can affect anyone, at any time in their life.
It’s our responsibility to make sure that when people need help our public services are there to reach out and protect them. Now, after two years of Tories, we have to reach out to protect our public services.