Does the UK expect too little of disabled people?

64% of working age disabled people are unemployed, and those paralysed by Spinal Cord Injury (SCI) are no exception when it comes to the many difficulties faced when finding work. As a charity offering practical support to spinal injured people, disability, benefits and employment are always high on the agenda as elements affecting opportunity, choice and independence.

We’re a bit late with this, but a week or so on and we’re still disappointed with Dr Stephen Duckworth’s comments about disabled people and employment. You see, we think that disabled people should expect more from Britain, not the other way round as Dr Duckworth suggested.
Duckworth, the chief executive for Capita’s Personal Independence Payment (PIP) assessment services, angered many disabled people recently when he stated that “north of a million” people currently claiming disability benefits should not be. In a rather confusing interview with the Sunday Times, Dr Duckworth suggested, without providing any evidence, that many of those claiming disability related benefits were not really disabled and merely had ‘trivial injuries’.  Appearing to switch between talking about Disability Living Allowance (DLA)/PIP, which he has previously acknowledged is an important and ‘enabling’ benefit, and Employment Support Allowance (ESA), he said Britain had failed disabled people by not expecting more from them. This expectation appears to mean an expectation to work with Dr Duckworth asserting that, “It is far better to go back to work to get better than to wait to get better to get back to work. Use work as a therapeutic intervention.”

Aspire agrees that there are merits to working and that many disabled people currently not working should be. Being in employment, volunteering, education or training has repeatedly been shown as having mental and physical health benefits. However, just because someone is looking for work there is no guarantee they will find employment. Despite legislation like the Disability Discrimination Act and now the Equality Act, disabled people are more than four times more likely to be involuntarily out of work than non-disabled people. And almost 60% of adults with impairments experience barriers in the type and amount of paid work they do. In an already competitive jobs market, though, where discrimination is still being fought, the notion that employers should take on staff who are in need of paid ‘therapeutic intervention’ is hardly likely to improve things for disabled people. Indeed, the situation is already compounded by the threat that many disabled people who currently receive DLA will no longer do so under the new PIP system. DLA/PIP is, in Dr Duckworth’s own words, “an enabling benefit...that in part removes some of the additional costs, which are imposed as a result of the disabling barriers that society imposes” on disabled people. The government has said it expects 20% less people to receive PIP than currently receive DLA. This may prevent many of this 20% who currently work from doing so due not being able to mitigate some of those disabling barriers through receiving DLA/PIP. Perhaps this is something Dr Duckworth should be more concerned about rather than appearing to attempt to dismiss those receiving ESA as not ‘really’ disabled.

Because Dr Duckworth is himself disabled, his words appear to be given extra weight and this is problematic on several levels. Disabled people are not a homogeneous group and different impairments affect people differently. Even those with a similar impairment to Dr Duckworth may not experience the same barriers to employment or the same experience of impairment. For example, being able to afford a top end wheelchair can make both moving around and remaining in your wheelchair much easier than the sort of standard wheelchairs most people receive through NHS provision. Also not everyone with a SCI will experience the same levels of pain, spasms, mental health response to major trauma, bladder and bowel management, and so on. Unfortunately, Dr Duckworth appears to be being held up as a disabled role model, an example of how to ‘overcome’ disability. However, no two people’s lived experience of disability is the same and focusing on the structural barriers which can lead to the higher rates of employment amongst disabled people is crucial.

It is a shame that his comments add to the general public’s confusion over the difference between ESA, which is an out of work benefit, and DLA/PIP, which is aimed at alleviating some of the additional costs of disability regardless of whether someone is in or out of work. At the same time, his words add to the idea that if disabled people just tried harder they could work, and don’t address the more pertinent issues of what employers could do to enable more disabled people to work. Disability and employment is a hugely important discussion that has to take place. But if we’re to see sensible discussions with positive outcomes, then both those speaking and those reporting on the discussions have to ensure that they are coming from a position of sound evidence and clear understanding of the bigger issues.

UN and Grant Shapps at odds over bedroom tax

This morning UN special rapporteur on housing, Raquel Rolnik, released her initial findings of an investigation into the impact of the government’s spare room subsidy policy, or bedroom tax as it's come to be known.

Rolnik said her, "immediate recommendation is that the bedroom tax is abolished", citing testimonies that led her to believe the UK was, "going backwards in the protection and promotion of the human right to housing". However, housing minister Grant Shapps has hit back strongly, claiming Rolnik is biased, that her evidence is anecdotal and that she had not met with any government officials.

Aspire has previously written about the problems with this policy and the impact it is having on disabled people. Grant Shapps may say that Rolnik has different political views to the government, but this does not address the problems she, and many others, have raised. It does not make the experiences of the hundreds of people Rolnik interviewed, the countless people who have contacted Aspire in fear of what will happen to them and their families, nor those surveyed by organisations such as the Papworth Trust, cease to exist.

There are simply not the required numbers of smaller properties to allow everyone deemed to be over occupying to move. This problem is compounded for many disabled people as it is even less likely that someone will be able to find accessible accommodation to move into. Research commissioned by Aspire found that twenty per cent of spinal cord injured people are already being placed in care homes after leaving hospital due to a lack of accessible housing.

Where the government have tried to address people's concerns about the policy their response has been inadequate. As Rolnik said, "The mechanism that they have in place to mitigate it – the discretionary payment that they provide the councils with, it doesn't solve anything, it's for just a couple of months, and the councils cannot count on that on a permanent basis, they don't know if it's going to be available next year, so it's useless." This is not to mention that research has suggested that 3 in 10 disabled people applying for discretionary payments have been refused them.

Aspire welcomes Rolnik's comments and is very disappointed that instead of addressing her concerns Shapps decided to question why a woman from Brazil, a country with their own housing issues, was lecturing the UK.  Aspire would have hoped that Shapps realised that Rolnik was investigating on behalf of the UN rather than the Brazilian authorities and would prefer to see the government address the issues raised rather than just trying to shout these legitimate concerns down.

Westminster Debate on Continuing Health Care and people with Spinal Cord Injury

Yesterday, Ian Lucas MP, who chairs the All Party Parliamentary Group (APPG) on Spinal Cord Injury, led a Westminster Hall debate on Continuing Healthcare (CHC) and people with Spinal Cord Injury.  Norman Lamb was the minister present to respond to the issues raised.

Ian Lucas raised the difficulty the APPG has had engaging with ministers over concerns relating to Spinal Cord Injury -with two ministers in particular refusing to meet with them. Aspire has faced similar difficulties and we can only hope that this debate sparks a change in the way that ministers engage with those raising issues relating to Spinal Cord Injury.

One key issue Ian Lucas highlighted was that the needs of someone with a spinal cord injury can be very complex making it crucial people have access to appropriate healthcare professionals. He said there is a concerning “culture of ineligibility” surrounding CHC with, “clinical commissioning groups interpreting the national framework differently to meet their budgets, rather than the specific needs of spinal cord injury patients”. Examples were given of how either not receiving CHC, or having it withdrawn, can have a dramatic impact on someone’s life, including forcing them to live in a nursing home. He referenced to research Aspire commissioned into the impact of living in a nursing home, concluding, as we did, that “spinal cord injury patients should not be expected to live in institutions rather than with their families”.  In responding, Norman Lamb stressed the national framework says that “the individual’s wishes should be taken into account”. However, it would be even better if he was able to agree that an individual’s right to a family life and to receive CHC in their own home should not be removed due to perceived costs.

Ian Lucas asked should there “be a presumption of eligibility for tetraplegics when determining continuing health care?” Responding, Norman Lamb stated that, “It is important to say that eligibility for NHS continuing health care is dependent not on an individual’s condition or diagnosis, but on the individual’s specific care needs.” As no two people’s needs are the same, Aspire agrees that it is someone’s needs which are assessed, not simply their injury level. However, this will only work if those needs are assessed by people who understand the complexities of Spinal Cord Injury and if the individual’s own experiences and wishes are taken into account. Norman Lamb appeared to agree, saying that if someone with specialist knowledge is not being involved in the assessment process that it “is a failure to follow the national framework and should be challenged”. He added  he was “interested to hear about cases in which that is not happening”; Aspire looks forward to helping him in this interest.

The minister was also pressed on the idea of monitoring whether people with spinal cord injuries are receiving the CHC they are entitled to.  Such a system could address the issue of “continuing health care packages being denied or dramatically reduced after reassessments, without evidence of clinical improvement”.  Norman Lamb said he would ask NHS England to provide him “with an assessment of how the work of CCGs complies with the guidelines”. We hope this could help develop a system to monitor whether CCGs are following the national framework and whether the wording of the framework is strong enough.

Spinal Cord Injury has long been overdue recognition in this sort of forum, and we are delighted that this debate took place. It was also nice to see Aspire, and our colleagues at the Spinal Injuries Association, receive recognition for the work that we do. But most importantly, it was of benefit to hear the government’s response to the issues raised; it would have been better if the Minister had been stronger and clearer in places, but nevertheless this is a useful starting point. Continuing Healthcare offers crucial support for those with spinal cord injuries and any threat to either the right to receive this support, or the choice of where this support is given, needs to be challenged. Aspire, in line with the statements from the Minister, will be ensuring this happens whenever failures in the system are brought to our attention.