A busy week for Personal Independence Payment

It’s been an eventful week in the disability sector with news surrounding Personal Independence Payment (PIP). PIP is the new benefit that is due to replace Disability Living Allowance (DLA).

First of all we had the government response to a consultation on the moving around activity of Personal Independence Payment assessment. Earlier this year, the government changed a qualifying distance in one of the assessment areas for PIP to 20 metres from its original proposal of 50 metres at the last minute.  People who can walk up to 20 metres, but struggle after that point, are likely to score fewer points in their assessment. This potentially affects their entitlement and the support they receive to meet their needs.

This change was made without the government even indicating it would do so during the consultation process. In the context of such strong feeling on this matter and a legal challenge pending, the government consulted on the matter (you can read Aspire’s paper here).

The government’s response to the consultation has now been published. Aspire is disappointed that after receiving over 1,000 responses and only five being in favour, that 20 metres will remain as a qualifying distance in the assessment.

The second piece of big news on PIP was that there would be a delay in reassessing people on DLA for the new benefit. The process was due to start on 28^th October but the government has now decided to take a more phased approach, starting with people living in Wales, West Midlands, East Midlands and parts of East Anglia.

On the slower roll out of reassessments, if the system is struggling to cope then a slower roll out is better than rushing full steam ahead. However, this is something that should have been thought of before. Changing the approach at the last minute and just creates more uncertainty and confusion.

The government expects all DLA claimants to have been invited on to Personal Independence Payments by September 2017. With 3.3 million people receiving DLA, this requires on average 825,000 assessments a year, or 16,000 assessments a week, or 3,200 assessments a day. This doesn’t even include new people entering the system!

With so many people affected, it’s no surprise that the government has had to rethink their approach.

As people are going through the process for the new benefit, we are already receiving feedback from people and having to make representations on their behalf to the Department for Work and Pensions and the assessment providers.

The government needs to improve its planning and give further assurances that it is in control of the roll out of the new Personal Independence Payment benefit. The last minute changes and impromptu consultations that we have experienced recently do not inspire confidence.

David Weir is just one of 300,000 disabled people without an accessible home

Paralympic athlete, David Weir hit the headlines earlier this week when it was revealed that he has to pull himself up the stairs in his own home several times a day because he doesn’t have a downstairs toilet. His local housing association does not have enough accessible properties to meet the needs of all the disabled people in the area. Presumably, the lack of downstairs toilet is not the only issue for Weir and this difficult route also has to be undertaken whenever he needs to check on his children after bedtime, change clothes or head for bed himself.

The story made the news because Weir is a household name. But the reality is that thousands of wheelchair users in the UK face similar difficulties in their own homes. We live in a country where so much of our housing stock is old and inaccessible; 300,000 wheelchair accessible properties would be needed just to meet the current shortfall, and the aging population is only going to make this problem worse in the future.

Making do in an inaccessible property can be extremely uncomfortable. Over the years we’ve heard from countless people who, like Weir, have done the best they can to get on with their lives in trying circumstances. There was Shelley who couldn’t shower or bath for two years because her bathroom was inaccessible, making do instead with a strip wash at the sink. And Mark who moved his bed into the family living room for 18 months as the upstairs was completely out of reach. John couldn’t even get into his own house, or back out again, without having two people to carry him up the steps to his own front door. Even so, in many ways, John, Mark and Shelley and all the others in similar circumstances were actually the lucky ones; 20% of every one who sustains a spinal cord injury will be discharged into a nursing home because there is simply nowhere else accessible, or even partly accessible, for them to go.

The effects of inadequate housing for wheelchair users are many and far reaching. The lack of independence can have a profound impact on people’s mental health and wellbeing, and it obviously puts a strain on family relationships too. Pulling yourself up stairs or over steps puts shoulder joints at risk of injury, a significant concern for wheelchair users. And there’s an inherent risk of infection when the lack of an accessible bathroom makes it difficult to maintain hygiene standards.

Yet despite this obvious need for many more accessible homes, we don’t actually do that much as a country to address the problem. Look at any new housing rhetoric and you are bound to see references to affordability and environmental sustainability; important issues, no doubt, but where’s the talk of making sure that disabled people can actual live in the finished properties?
London does have a policy in place that requires 10% of all new builds to be wheelchair accessible or easily adaptable. The latest figures suggest that we don’t quite manage that target, but at least it’s a start and we desperately need other regions to take note and bring in similar rules. And with those rules in place, the architects and builders need to think a bit more about what they are doing; we visited a wonderful accessible flat on the first floor of a new development recently, but found that the lift to reach it was too small for a powered wheelchair.

With accessible properties in place, Local Authorities and Housing Associations need to make sure that the right people have access to them. A Greater London Assembly policy paper revealed that in London, 70 per cent of wheelchair accessible homes in 2008/09 went to households with no wheelchair user. In addition, the Greater London Authority’s Housing Strategy paper revealed that in 2007/08, only 46 per cent of wheelchair users moving into a housing association home were allocated a wheelchair accessible property, while 68 per cent of lettings of wheelchair accessible homes were to households with no wheelchair user.

Aspire is currently working on a response to the Housing Standards Review consultation which focuses on issues such as space and access of housing. We will argue the case for stronger minimum requirements for space and access standards that meet the needs of wheelchair users.

Better planning, more housing and better organisation; it’s really not rocket science. But it will mean that wheelchair users – be they Paralympians or mere mortals – have properties where they’re not risking their own health just by living there.

Party Conferences: how they fared on Disability

Party Conferences have been all over the news in the last few weeks, with all UK political parties trying to gee up their activists and get their message across to the nation about why they believe people should support them.

The main highlight of party conferences is inevitably the leader’s speech. We looked beyond that and specifically analysed the content of speeches from the MP with lead responsibility for Work and Pensions in the main parties.

The difference between them all was huge this year. Firstly, we were disappointed that there was no main conference speech at all from the Liberal Democrat lead Steve Webb MP so it only leaves us with speeches from Iain Duncan Smith MP (Conservative Party) and Liam Byrne MP (Labour Party) to analyse.
A quick scan of the speech transcripts sees disability or disabled mentioned once in the Conservative speech and seven times in Liam Byrnes address.

If we were to pick a moment of inspiration from Iain Duncan Smith’s speech, we’d opt for the line, “Our reformed welfare system will once again catch you when you fall, but lift you, when you can rise”. An aspiration I think that all can share with the Secretary of State. We want a welfare system that is there for you when you need it and that helps you and gives you a lift as well so that people can and strive for the best.

Both the Labour and Conservative speeches had a great deal of political bashing. However on the whole, it was heartening to see disability being mainstreamed and given such high prominence in the Labour Shadow Work and Pensions Secretary’s speech. In fact, the Labour speech was much heavier on real policy and proposals, whereas the Conservative speech was much more focused on their record to date in government tackling debt by cutting welfare.   

It’s hard to compare two very different approaches, however there is one main policy difference that was clearly identifiable and comparable: the issue of under occopancy of social housing, and the policy which has been nicknamed the Bedroom Tax. Iain Duncan Smith saw the policy as an achievement and said, “we are ending the situation where taxpayers would have to pay out £1 billion over the next two years for some social housing tenants to have spare bedrooms.” Byrne on the other hand said, “we say the Bedroom Tax should be axed and axed now and if David Cameron won’t drop this hated tax, then we will repeal it” giving a clear commitment to scrap the under occupancy penalty.  So one Party sees it as a success and one clearly doesn’t and has promised to scrap the Bedroom Tax.

(See our advice and information about the Bedroom Tax here)

I’m sure that more policies will emerge as we draw nearer to the general elections in 2015 but the dividing lines are beginning to emerge, at least, between the two main political parties.

Aspire will continue to try and influence all political parties n issues that affect people with spinal cord injury and want to encourage you all to do so too by contacting your local MPs. If you want help in going about doing this, feel free to contact our campaigns team on 020 8420 6702.

---

Krupesh Hirani, Policy and Research Officer

 

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.

GPs charging for medical reports needed for benefit appeals

News broke this week that many GPs are either refusing to provide medical evidence letters for appeals against Work Capability Assessment (WCA) decisions or charging people up to £130 for them. This comes not long after the government admitted that these assessments had major failings.

Earlier this year it was reported that GPs in Wales were told that people requesting letters of medical evidence for WCA appeals were an "abuse of NHS resources".  Now there is evidence that some GPs who will provide such letters are charging for them. With the Citizen's Advice Bureau reporting 54 per cent more people seeking support from them regarding Employment Support Allowance (ESA), this is very worrying. All the more so when you consider that disabled people are twice as likely to be living in poverty as non disabled people, thus making them less likely to be able to afford to pay for the letters.

GP's have argued that they simply don't have the time to deal with requests for appeal letters. They experienced a 21% increase in requests between January and July alone this year. Last week a "just say no" campaign to support GPs refusing to provide such letters was launched. All of this is worrying not only in terms of making appealing WCA decisions harder, but  also in the potential it has to create tension and hostility between disabled people and their GP. This is of particular concern given disabled people are more likely to need to visit their GP on a regular basis.  

The DWP guidelines state:

“Claimants should contact Jobcentre Plus or the Appeals Service, where appropriate, if they think that further medical evidence is necessary to support their claim or appeal. They should state clearly their reasons for believing that further evidence is necessary.

If Jobcentre Plus or the Appeals Service consider that further medical evidence is necessary, they will seek it. They will be responsible for paying any fee to the doctor providing the report.”

Going by what DWP have said, people should not need to pay at all. Instead they should provide reasoning when appealing on why they believe further medical reports is needed. If these reasons are agreed, then the Appeals Service should pay. However, a parliamentary briefing note reveals that of requests from the DWP for additional information from GPs, only 50% are replied to.

It is also unclear whether people appealing a WCA decision are made aware of the willingness of Jobcentre Plus and the Appeals Service to request and pay for additional evidence from their doctors, or what the process is if their case for obtaining this information fails.

So we have a failing assessment process, with decisions repeatedly being overturned on appeal, and the access to medical evidence which may help with any appeal in some cases being costly or outright denied. Aspire believe this makes the urgency for the Work Capability Assessment to be reviewed and changed all the more important.