Aspire and World Human Rights Day - disabled people and employment

The last of our posts for World Human Rights Day looks at the right to work.

1. Everyone has the right to work, to free choice of employment, to just and favourable conditions of work and to protection against unemployment.
2. Everyone, without discrimination, has the right to equal pay for equal work.
3. Everyone who works has the right to just and favourable remuneration ensuring for himself and his family an existence worthy of human dignity, and supplemented, if necessary, by other means of social protection.

“Disabled people are significantly less likely to be in employment than non disabled people”

UK public policy has seen a shift in focus to getting people from benefits and into work. The Department of Work and Pensions’ flagship Work Programme, aimed at getting people off benefits and into employment has risen in prominence, particularly in light of the recent economic climate and drive to get the benefits bill down.

Despite the schemes and assistance provided, it is still difficult for disabled people to gain employment. Compared to other equality strands such as race and gender, disabled representation for high level jobs is massively under-representative of the disabled population. A 2009 study from Leonard Cheshire Disability found that 43% of respondents had been turned down for a job because of their impairment. And even when people do get into work, disabled people are paid less than non-disabled people for doing the same job.

When broken down into full-time and part-time, figures show that 32.9% of disabled people were in full-time employment compared to 58.9% of non-disabled people and 14.4% of disabled people were in part-time employment compared to 18.3% for non disabled. This means that a greater proportion of disabled people in employment work on a part-time basis when compared to non-disabled people.

The public sector has shrunk during this Parliament with Departments making around 25% spending cuts across the board and even more in some areas with some Councils having their grants reduced by even 50% by 2018.

The government has looked to encourage private sector growth and has looked for it to provide 2.5 million jobs. The public sector fairs better than the private when it comes to disability employment rates; and the odds of having employed a disabled person are one and a half times higher in the public sector than in the private sector.  

Perception amongst employers on disabled people is also misguided. The UK has lower employment rates than other European countries after spinal cord injury. In a survey of employers, 33% said hiring a disabled person was a major risk and 47% said it would be difficult to retain an employee who became disabled.

Unless there is a drive to promote disability awareness to businesses, greater reliance on the private sector to provide employment opportunities could have a negative impact on employment opportunities for disabled people.

Research has found that the cost efficiency of workplace support increases over time and becomes cost-efficient to taxpayers around the fourth year of operation. For every £1 invested in supported employment, the taxpayer gets back around 43p from savings elsewhere in the system making the investment worthwhile in the third year. However, where there is opportunity for short term savings to be made, the long term benefits can often be overlooked.

The government does have policies in place that do help disabled people get into work. Aspire has received positive feedback on the Access to Work scheme. The scheme provides financial support to disabled people travelling to work as well as help at work, such as with equipment or support workers.  

We hope that this scheme will continue to receive investment and that it will be publicised wider so that people know that there is funding to help them get back into the workplace. More help from schemes like Access to Work will help towards recognising this Human Right for disabled people. Furthermore, Aspire has launched InstructAbility which trains disabled people to become fitness instructors around the country and helps them into work.

So we will end our Human Rights series on a more optimistic note on the theme of employment and we hope you have enjoyed reading these series of blogposts.

Social Security - Aspire and World Human Rights Day

Everyone, as a member of society, has the right to social security and is entitled to realization, through national effort and international co-operation and in accordance with the organization and resources of each State, of the economic, social and cultural rights indispensable for his dignity and the free development of his personality.

Two contentious areas of disability benefit reform relate to Employment Support Allowance (ESA) and Disability Living Allowance (DLA). Both areas are being severely criticised by disability groups and disabled people. DLA is a non-means tested benefit that recognises the barriers that disabled people face and the extra costs they incur because of their impairment. DLA is set to be replaced by Personal Independence Payments (PIP). PIP will still have the same aims to support disabled people. However, the government’s own projections show that they expect the case load, that is the numbers supported, to decrease. Within their own figures, they have also predicted that less people will receive higher mobility support.

ESA has had its problems stretching back to its creation. We have had negative reports over the years on the accuracy of assessments, assessment centres being inaccessible and the success rates of appeals.

Another damaging development has been the new under-occupancy penalties. This has been more commonly described as the Bedroom Tax. As a result of this welfare reform, we have found couples unable to share a room and people with heavy machinery being penalised for having what the government deems to be a spare bedroom.

Aspire believes that state should contribute and support disabled people if needed to live independently in society. Doing so has an overall positive effect on that person and will empower them to contribute to society too. We work with decision makers to get this argument across and we will continue to strive for this Human Right for disabled people.

Civic Participation - Aspire and World Human Rights Day

1)      Everyone has the right to take part in the government of his country, directly or through freely chosen representatives.

2)      Everyone has the right of equal access to public service in his country.

We are a democratic country and all have the right to participate and even be elected representatives. However, disabled people are significantly underrepresented in government and in Parliament. If Parliament was truly representative of society, there would be 65 disabled MPs in Parliament!   

Furthermore, people have found that even visiting Parliament can be a strenuous task for wheelchair users. Wheelchair users visiting Parliament have to be escorted around the building whereas non-wheelchair users practically can roam around freely in most of the public areas once they get through the security barriers. This is more different access than equal access.

The ability to vote and participate in elections is a key democratic right. In the 2010 Polls Apart report, research found that at 67% of polling stations surveyed, disabled people faced accessibility barriers. That’s an improvement of only 1% on the last general election, and just 2% on the election before. Progress is not moving fast enough.

Councils regularly review polling stations and as part of this, they should also ensure that there are as few barriers as possible at polling stations for disabled people. Staff training was also cited as an area that needs improvement. In one case study in the report, a voter felt totally ignored as the member of staff chose to communicate with their personal assistant rather than the individual voter.

The solutions for realising this Human Right are in better training for staff, wider voting options and greater accessibility of polling booths. Certainly the rate of improvement needs to change for the better. A 2% decrease in accessibility barriers faced since two general elections ago is nowhere near good enough.

Property - Aspire and World Human Rights Day

Everyone has the right to own property alone as well as in association with others.

What happens when someone cannot get back into their own home following a spinal cord injury?

Every eight hours, someone is paralysed by spinal cord injury. Imagine if you have steps going into your home, or live somewhere with narrow corridors and no turning spaces. You might have a home, but you may not be able to access it. Your right of owning that property remains, but it can be agonising not being able to get into it.

Our research shows that 20% of people with Spinal Cord Injury are discharged to nursing homes. Often this is because of the lack of accessible housing available. Increasingly, Aspire is finding that people are unable to go back to their own place because care policies are becoming restrictive when it comes to delivering in people’s own homes. Some Clinical Commissioning Groups (CCGs) as well as one local authority we are aware of, have set a cap on the amount that they are willing to spend on delivering care in people’s own homes. In such cases, an arbitrary percentage has been identified where if the cost of delivering care at home is above this percentage compared to receiving this care in a nursing or residential setting, the CCG or council will not meet the costs.

Essentially, this removes the individual’s whole lifestyle, family needs, work needs and places greater emphasis and importance in decision making on short term costs. Often this doesn’t recognise that the long term cost implications are far worse. The physical and psychological impact on people with Spinal Cord Injuries can be devastating as our research has found.

What’s more, people may have access to their property but cannot get to all areas of it. 37% are discharged to unsuitable housing meaning that they may well be in their own home, but not necessarily living in a way that encourages independence. They may not be able to access their own bedroom so are forced to live downstairs. This can be a horrible experience if your bathroom is also upstairs.

Through one of our surveys, a Spinal Cord Injured person in Cornwall told us, "I have no life as such. I live in one room. I can't get out." The psychological impact in living in these circumstances is damaging.

The Disabled Facilities Grant is key to helping people to adapt their own homes. However, it is a pot of money that is no longer ring fenced. At a time when funding for local councils is being heavily cut by the government it can be tempting to also reduce spend on adaptations.

If we are to recognise this Human Right for disabled people, we need more accessible housing and a better and more efficient Disabled Facilities Grant process. This would go a long way to fulfil the potential of disabled peoples’ rights to property.

Incitement of Discrimination - Aspire and World Human Rights Day

All are equal before the law and are entitled without any discrimination to equal protection of the law. All are entitled to equal protection against any discrimination in violation of this Declaration and against any incitement to such discrimination.

There has been huge uproar, and Aspire believes quite rightly so, over some of the language that has been used in the media and even by leading politicians in the debate on disability benefits.

The media has been seen to showcase extreme cases of benefit fraud in their print and online articles. The words "scrounger" and "work-shy" have been casually used in the benefit reform debate.

Scope produced a report last year which found that:

· 73% of disabled people experienced the assumption that they don’t work
· 83% said coverage about benefits scroungers can negatively affect attitudes
· 87% said benefit scroungers themselves have a negative effect on attitudes

Disability hate crime is at its highest rate since records began. There has been great progress over the last 60 years but there is great concern about more recent trends.

What we need and what we are calling for is a more truthful representation of disabled people in society. Sadly, this does not make provoking headlines which is often what the tabloids are after.

However the Paralympic games in 2012 did show that as a society we could be positive about disabled people. However there is a line of argument that says that this positive view only applied to disabled athletes. Where the Olympic and Paralympic legacy has failed is harnessing and taking that positive mood to reflect on all disabled people in society. Society needs to come together to speak louder against such injustices and promote a more positive and accurate reflection of disabled people’s contribution to society.

We need more disabled people at universities, mainstream schools and workplaces. The opportunities need to be there for disabled people to access mainstream services so that people can recognise the truth.

A lot of work is needed and a significant culture change in how disabled people are viewed and treated is needed to realise this Human Right.

Dignity - Aspire and World Human Rights Day

All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood.

Article 1 in the Universal Declaration for Human Rights addresses the issue of dignity. But what is dignity for a spinal cord injured person?

We estimate that around 25,000 people with spinal cord injury receive some form of care or support to meet their health and social care needs.

People with higher level spinal cord injuries often receive 24 hour care, seven days a week to help with day to day tasks as well as fulfil medical needs.  Having someone there to turn you over in bed, to get you out of bed, provide bowel and bladder care is very intrusive.

What helps is when people’s preferences are listened to. Often these relationships can work well when people actively engage, interact and, as strange as it sounds… be human.

A respondent to our care survey told us, “the carers I have are fantastic, and I think of them as friends and equals. The social services team my Council are brilliant and so are the rehab team at my hospital who had the first contact with the social workers.”

Some on the other hand have a personal preference to have their personal assistants come in, do the job and leave. Personal assistants, district nurses and carers need to be mindful of the need to listen to the person they are caring for.

Even when undergoing assessments for disability benefits or social care provision assessors are seeking minute details on people’s lives. Often this is beyond what is actually relevant to the support being assessed for. 

When it comes to personalised social care, what people spend their direct payments on is heavily monitored by some local authorities. Of course they have a duty to account for money that they are spending on care packages, but some of systems for reporting information are far too invasive and intrusive. Some local authorities still insist on receiving paper copies of every penny people spend with their direct payments, making the whole process bureaucratic and burdensome at the same time. 

People deserve the right to be treated with dignity and local authorities and health commissioners need to be mindful of the feelings of the person being cared for too when carrying their duties. Regular training to care agency staff to instil a culture where the person’s wishes are always at the forefront of staffs’ minds would go a long way to ensure people are helped with greater dignity.

 

Aspire and World Human Rights Day

10^th December 2013 will mark 65 years since the United Nations General Assembly's adoption and proclamation of the Universal Declaration of Human Rights. The day is known internationally as World Human Rights Day. 

In the run up to 10^th December, Aspire will be looking at seven specific articles in the Declaration. We will be highlighting the significance of the articles along with the shortfalls of progress and how we should be improving to ensure we are meeting the obligations that we have signed up to as a nation.

We’ll start off with Article 25 to warm you up and set the scene; 

Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family including food, clothing, housing, and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.

Nonetheless, this is the only Article which specifically mentions disability out of all 30 articles.  What it enshrines is that in the event of adversity beyond someone’s control, people should be supported to the right security, food, clothing, medical care and necessary social services.

Recent evidence shows that this is becoming more and more difficult for disabled people in Britain today. More people are turning to food banks for help, benefit cuts mean that less well off people have less money for clothes and medical care and social services are becoming more restrictive as the NHS and local councils feel the pinch of budget cuts.

In the days ahead, we will be writing on specific Human Rights articles on dignity, discrimination, property, civic participation, social security and employment.

Stay tuned to our website and social media channels over the coming days for more on World Human Rights.   

Keeping the flame alive

Yesterday, a House of Lords select Committee published a report on the legacy of the Olympic and Paralympic Games. The Committee has been specifically set up and tasked to look into this issue.

Two areas that were reported on focused on the drive to increase participation and the perception of disabled people.

We found some positive statistics in the report. There has been in increase of 353,000 disabled people participating in sport once a week since 2005/06. Sport England was highly praised after adapting its funding arrangements after the Games to target disabled people.

However, it was noted that participation amongst disabled people was around half the rate of participation of non-disabled people in sport.

The will is there, with the report citing that 8 out of 10 disabled people were considering taking up sport after the Games. 70% of disabled people agreed that the Games were inspirational for them.

Yet the report admits that this positive hope is hindered by practical barriers. Barriers such as untrained staff to cater for disabled customers and lack of appropriate equipment. Indeed, when we reported on disability and the fitness industry back in 2011, we called for:

·         Greater participation rates of disabled people in sport and leisure.

·         Better inclusive fitness provision within the leisure industry, with accessible equipment being available at all sites. 

·         Better understanding and awareness of inclusive fitness in the fitness industry.

·         More instructors in the leisure industry trained to work with disabled people. 

All these asks are still as relevant today as when we conducted our research before the Olympic and Paralympic Games. Our InstructAbility Programme, which looks to increase the pool of disabled fitness instructors in the country, is going some way to address some of the shortfalls we found.

The findings on changing perceptions of disability show there is great room for improvement. The period after the Games saw a more favourable impact on how disability sport was perceived. But this is in great contrast to how disabled people in society are viewed; the fact that disability hate crime statistics are ‘the worst they have ever been in 10 years of reporting’ would suggest that the Games have failed to create a positive legacy on perceptions of disabled people.

Unfortunately, the only recommendation stemming from this point in the report is for the government to continue to monitor public perceptions of disability and to continue to promote disability athletics. We believe this call should be more ambitious and that the committee should be bolder in their ask to government to use the legacy to improve perceptions of disabled people. Not doing so fails to hold to account the progress of the lasting legacy of London 2012.

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.

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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. 

Legal challenge against Council's care capping policy fails

A legal challenge against Worcestershire County Council implementing a 'maximum expenditure policy' on social care has failed

In November 2012, Worcestershire County Council announced it would be implementing a policy which placed a maximum cost on the amount they would pay towards an individual’s social care requirements. This maximum was set at the cost to deliver care in a residential care home.

In responding to the consultation that Worcestershire carried out regarding the introduction of this policy, Aspire pointed out that “care in your own home and care in an institution is not comparable. If you are not comparing like for like, how can you possibly compare the cost of the two systems?”

Aspire, local disabled people, and many others, are fearful that if it is more expensive to receive the support at home than in a residential setting, people could be forced into residential care. A Worcestershire resident known as D - a 17 year old who has a moderate learning disability and epilepsy, and who will soon be accessing adult social care services - applied for a Judicial Review of the Council's policy. The case against the Council was that in announcing such a policy they had failed to review what its consequences could be and had failed to comply with its public sector equality duty under section 149 of the Equality Act 2010. Despite ruling in favour of the Council, the judge did warn that:

“...in exercising its discretion as to whether to allow greater costs than the residential equivalent, the Council will be required to take into account its own policy objectives of giving disabled individuals control and choice over their care support, encouraging disabled individuals to live independently in the community, and having less not more individuals in residential care."

“It will also be required to take into account its assurances during the consultation period – and in the course of this claim – that no individual will be forced into living in residential care, as a result of this policy alone.”

So although there still remains fears about the consequences of this policy, it is definitely welcome to have a high court judge state that such a policy must not result in anyone being forced into residential care. This will help provide weight to any future legal challenges if anyone is forced into residential care as a result of this or similar policies.

The worries stretch beyond Worcestershire. There are concerns regarding cuts to social care and the consequences regarding independent living across the UK. In 2011 an inquiry by the Joint Committee on Human Rights into Article 13 of the UN Convention on the Rights of Disabled People received "considerable evidence that disabled people’s right to independent living was beginning to be severely thwarted by the funding situation in this country". The impending closure of the Independent Living Fund (ILF) – another vital source of funding for social care which allows people to live independent lives - is feared to only add to this situation.

Aspire commissioned research which clearly shows the detrimental impact on people with SCI of living in institutionalised settings. Summed up by a research participant called Harry, living in a non-independent setting “wrecks who you are, totally wrecks you, strips you down to the bone, destroys you, takes away your spirit, your independence, breaks you, just breaks you. It took away who I am. I’m just another chicken on the production line. Pluck you, and then wrap you up, and model you into what they want you to be – not who you are. It just breaks you”.

It takes away an individual’s choice and control over their life, creating a prison like environment, and also prevents them from having a family or social life or being in employment. Because of this, we share the concerns of other disability groups that a policy such as that of Worcestershire County Council could result in people being forced to live in residential care.

We believe that disabled people’s right to have the same choices and opportunities as non-disabled people is of paramount importance. We will be watching the implementation of the policy and hope that Worcestershire and other local authorities take seriously the judge's warning that Worcestershire should act on its assurances "that no individual will be forced into living in residential care, as a result of this policy alone". 

Can’t walk: not active? Wheelchair users continue to be missed out in mainstream sport surveys.

The newspapers this week reported on the state of the Nation’s exercise levels. Even when you are used to seeing regular articles on rising obesity levels and falling health indicators, it was still pretty shocking; 20 per cent of us, it seems, have not done any exercise in the last four weeks and 80 per cent do not manage to meet the government’s recommended activity targets.

This latest depressing read comes from research undertaken by the Centre for Market and Public Organisation at Bristol University using Sport England’s Active People Surveys.

Sport England’s own analysis of their data focuses on participation in sport and active recreational activities. We know that disabled people fare badly here; just 18% of disabled people play sport once a week, against 35% when the whole adult population is considered.

Through mystery visits at gyms, we’ve found that equipment can be inaccessible. Although staff were accommodating and friendly, fitness activity that staff at a gym facility suggested to the wheelchair user was poor. This suggests that as well as better equipment, better training and awareness is needed among staff about wheelchair users. Aspire’s own research in this area has shown that there is discrimination within the leisure industry, and a lot of the work out of the Aspire National Training Centre is aiming to improve things; clearly, there is still a long way to go.

What makes this new study so interesting is that they use data that Sport England collect but do not themselves break down. Importantly, this means that we can see how active a lifestyle people lead, even when they do not participate in organised sports; the study is just as interested in how often people walk or cycle for non-leisure purposes as it is in how often they go to the gym or throw a ball around a court.

This shows, amongst other things, that there is a positive correlation between household income and activity levels; given that disabled adults are twice as likely to live in low income households as non-disabled people, it seems it’s not just discrimination and access that needs to be tackled if we’re to see more disabled people being active. These are barriers that disabled people face in participating in sport.

But, of course, there’s a flaw here in that if you can’t walk, the research assumes that you can only be active by taking part in a “para-sport”. What we’re missing is information on how active manual wheelchair users are in their day to day lives. Some aspect of the ‘Paralympic Legacy’ should have taught society that the ability to walk is not the be all and end all of getting around, but there’s more to it than that. As we’ve seen, disabled people face more challenges than most in accessing formal activities, so having the lifestyle data for wheelchair users is particularly important.

Aspire finds the ‘Doing Sport Differently’ report by Disability Rights UK a useful guide for disabled people in finding ways in which they can be more active in sport and exercise.

Wheelchair users face all the health disadvantages that come with being inactive, as well as additional difficulties that come with transferring and self-propelling the more unfit and heavier they are. The NHS doesn’t always help, often providing wheelchairs that are so unsuitable they limit the users’ ability to get out and about. Knowing to what extent there’s a problem with inactivity, and using the data to be able to follow the impact of changes or campaigns put in place, would make a massive difference.

We’ll be writing to Sport England to suggest some changes to their questionnaire so that wheelchair users are not omitted from the lifestyle section of their questionnaire. And in the meantime, we’d suggest everyone gets out for a quick walk or push round their local park this week.