Personal Independence Payment delays causing unnecessary hardship

Aspire is concerned with the roll out of the new Personal Independence Payment benefit and the hardship that delays in the system are causing to people with Spinal Cord Injury (SCI). This is of particular concern to those who have been newly injured and are having to wait for months before they received their Personal Independence Payment entitlements. The catalogue of errors and delays experienced by Steve who sustained a Spinal Cord Injury in 2013 is something we believe no one should experience.

On 29^th June 2013, while Steve was still a patient at the NHS Spinal Cord Injury Centre in Sheffield, he completed part I of his Personal Independence Payment claim. He received his first PIP payment on 5^th December 2013. What Steve experienced during this time period is unacceptable.

First of all, Steve felt that the form was incredibly difficult to complete.

“With the amount of information that they ask for, in a lot of places, it feels like an attempt to try and catch you out.”

Secondly, Steve was given dates for potential assessments that Capita were unable to commit to themselves. On one occasion, the assessor did not turn up at the arranged time. When Steve phoned the Capita advice line, he was told that his assessment had been cancelled. Unfortunately, they had failed to tell Steve this.

When the Assessor did turn up, there was a computer error and they were unable to access any files that Steve had sent as part of his claim.

“The whole process was unnecessarily bureaucratic. It was a concerning time for me… absolutely unbearable. Missing appointments, not letting me know. It is a totally inadequate service.”

Steve received help from his Member of Parliament and Aspire was there to help every step of the way. He was able to fight his corner and raise the issue on Capita’s agenda to the extent that senior staff at the organisation’s PIP operation took action. We know that Steve is not alone. We are even more concerned about people who are going through the system without adequate support who do not raise their voices loud enough.  

We accept that where people do successfully receive entitlements, payments are backdated. However, the financial impact that this has on people, especially at a time when they most need additional income to meet costs after having a life changing injury, is devastating. It hinders people’s ability to get on with their lives and be more independent. In one case, Aspire found someone wearing jumpers and gloves in their own home because of the financial difficulty they were facing following their injury. 

Furthermore, we are concerned with the contractors’ ability to cope when reassessments are rolled out on a national scale. 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 does not even include new people entering the system.

With so many people affected, it is no surprise that the government had to rethink their approach last year and introduce a more phased reassessment timetable.

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. Indeed our introduction of a new Welfare Benefits Advice Service is testament to the additional support we anticipate we will have to provide to people with SCI as a result of multiple benefit changes.

If you have Spinal Cord Injury and are experiencing any problems with any welfare benefits issues, contact Aspire’s new Welfare Benefits Advice Service on 020 8420 6711 or email welfarebenefits@aspire.org.uk

(*Steve is not the individual's real name) 

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.   

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.