People with disabilities are feeling the effects of the government’s austerity policies more than most – and they are having a real adverse impact on their lives, as Mary O’Hara has found out:
As the mother of a 20-year-old with a number of learning disabilities, Yvonne Newbold has learnt a thing or two over the years about fighting for adequate funding and appropriate care for her child. But while it has always been a battle to access the range of help needed, she is emphatic that austerity cuts have made the circumstances of families like hers much tougher and that, with more cuts to come, is likely to get even worse.
The 54-year-old [pictured with her son, Toby], who is also coping with a diagnosis of terminal cancer, is clear that the plethora of cuts and welfare reforms affecting disabled people are profoundly destructive and wrong-headed. “Up until about 2008 it felt like things were improving,” she says. “I really thought it would be better for the next generation. Not any more. Cuts to things like respite care have had a massive impact. They can leave families broken. If we hadn’t had the help [from benefits and services] I would have collapsed a long time ago. What would the cost of that have been [to the state]? Cuts are a false economy.”
Feeling the effects
When, in the autumn of 2012, I embarked upon a year-long project for the Joseph Rowntree Foundation travelling around the UK chronicling the early impact of the government’s austerity policies I encountered all kinds of people being affected but without doubt people with disabilities – including those with learning disabilities – were at the top of the list of those bearing the brunt.
I was tasked with going into communities and interviewing people on the frontline as cuts were being rolled out and to record their experiences and insights as I went along. Such was the unprecedented extent of austerity’s reach on disabled people and the most marginalised and poorest in society in general that my initial reports in 2012 and 2013 have formed the basis of a book, Austerity Bites, published in May.
As part of this project I found, as numerous studies and reports have also since austerity was introduced, that people who were disadvantaged prior to the economic crash of 2008 were left reeling as benefits were curtailed and support services vanished or were pared down. Time and again, disabled people, their families and campaigners told me of the staggeringly adverse effects cuts were having.
One young woman in Rhondda, Wales, who has Down’s syndrome told me of how she was becoming increasingly anxious the more she heard about the variety of cuts that were on the way. As well as being concerned about what access she would have to services in the years ahead she worried for her elderly parents. “I have to watch my father doesn’t fall. I’d love to have a bit more [help]. I [have to] think about my health and other people’s as well. I worry about what will happen.” Her fears were typical of many.
Over time policies as diverse as the spare room subsidy – better known as the ‘bedroom tax’ – cuts to local services such as day centres for youngsters with learning disabilities, cuts to NHS learning disability provision, restrictions on eligibility criteria for social care and various benefits changes and punitive sanctions were clearly having a devastating effect on hundreds of thousands of disabled people. This is how campaigner Linda Burnip, of Disabled People Against the Cuts, summed up the situation: “The impact of austerity has been massive – and this is on top of barriers that already existed for disabled people. It’s not only welfare and benefits but care and support too. Local authorities’ funding for care has been slashed.”
There were a number of distinct issues that came up repeatedly when I interviewed disabled people and carers. Chief among these were changes to key benefits that, thanks to the efforts of campaigners – and often as a result of legal challenges – were at least raising public awareness by generating media coverage. These included changes to Disability Living Allowance and its replacement by Personal Independence Payments – including the on-going problems with its implementation – as well as the incredibly contentious work capability assessment for eligibility for Employment and Support Allowance.
The closure of the Independent Living Fund (ILF), while affecting a relatively small number – about 20,000 individuals – was another. Many people expressed deep worry that the ILF’s demise would result in a reversal of hard-fought-for gains including de-institutionalisation and personal independence as people with learning and other disabilities could no longer get the support to live in their own homes within communities. As Christine Stringer, the 69-year-old mother of a 48-year-old son with a severe learning disability, told me: “I am terrified for Michael’s future. If ILF funding is cut when it is handed over to councils to administer it will not only reverse the progress already achieved but it will devastate lives.”
As I travelled the country, a number of specific aspects of austerity impacting directly on people with learning disabilities and their families featured especially prominently and these were, as one interviewee told me, “leading to a lot of hidden suffering”.
For example, cuts to the number of nurses in the NHS and decreases in the range of (already sparse) NHS services being offered to people with learning disabilities – something highlighted by the Royal College of Nursing as far back as 2012 – were a big concern. Another facet of austerity that repeatedly came up was that unprecedented cuts to local authority budgets were impacting on specialist learning disability services on which families relied.
While many councils had initially tried to protect frontline services for people with learning disabilities, Mencap and other charities were reflecting what I was seeing. They warned that with more cuts on the cards for 2014–2018, fears of further loss of services was widespread.
The fallout from cuts continues to escalate and has, in fact, become so far-reaching it’s hard to keep track of, never mind challenge effectively, according to Mencap. Jo Davies, the charity’s campaigns lead, summed up what they are witnessing around the country. “I’ve been doing stuff around cuts for two and a half years. When I started it felt like cuts were everywhere but now it feels like it’s definitely getting worse. We are getting more requests for help all the time. There’s a chipping away from numerous angles. It’s traumatic.”
Davies says one positive development has been families joining forces with charities to challenge cuts at a local level. But while there have been successes, it feels like “firefighting” and the campaigns can mean yet another burden placed on families who are already struggling. Plus it’s not just services closing, it’s about the quality of those that remain. We are seeing [funding] being driven down for those that survive.”
As well as cuts to respite care, day services are either being lost or the hours they are available cut leaving many people without ‘vital’ companionship and a connection to their community.
Also reflecting what people told me, Davies points out that adjustments by local authorities to eligibility criteria for social care meaning that people with ‘moderate’ needs are increasingly not getting the help they need, adds another acute level of difficulty. “It really does feel like we have taken a big step backwards.”
There was one more, very important aspect of austerity that families and campaigners brought up wherever I went and which they believed was propping up a cuts agenda that would continue to harm disabled people in the future if left unchallenged. This was the myth of the ‘scrounger’ that so effectively depicted anyone on benefits or living with a disability as undeserving and a drain on society. It wasn’t just that cuts were happening I was told – it was that disabled people and their carers were vilified.
Newbold’s conclusions about this were typical when she wonders how bad things have to get before the damage is halted.
“We are moving into a culture where it’s dog eat dog. People on benefits are demonised. As a parent of someone with severe learning disabilities I have received benefits – but I am on call 24/7. Abuses of people with learning disabilities are [already] everywhere. As a society we need to take a very long, hard look at ourselves.”
About the author
Mary O’Hara is a freelance journalist. Her book, Austerity Bites; a journey to the sharp end of cuts in the UK, is published by Policy Press. It is available from Amazon. [link: www.amazon.co.uk/Austerity-bites-Journey-Sharp-Cuts/dp/144731560X/ref=sr_1_1?s=books&ie=UTF8&qid=1401888280&sr=1-1&keywords=austerity+bites]
This article first appeared in the May/June issue of Learning Disability Today. For more articles like this, you can subscribe at www.learningdisabilitytoday.co.uk/learning-disability-today/