Aspire meets Shadow Minister

Last week, Aspire met Kate Green MP, the Shadow Minister for Disabled People, to talk about the work of the Charity and also raise our concerns about the rollout of Personal Independence Payment (PIP) Benefit. PIP is the new benefit that is due to replace Disability Living Allowance (DLA).

Kate only recently became the Shadow Minister towards the end of 2013 and this was the first time that we had an opportunity to directly speak to the Shadow Minister. Kate has an impressive background in the charity sector. Before she became a Member of Parliament, she was the Chief Executive of the Child Poverty Action Group.

She showed particular interest in Aspire’s Housing Programme and how we worked with NHS Spinal Cord Injury Centres to offer temporary housing to newly injured patients who had no access to accessible housing after being paralysed. The fact that 20% of people with SCI are discharged to nursinghomes is a shocking statistic and Kate thought so too.

Kate was happy to work with Aspire to raise the issues that were affecting people with Spinal Cord Injuries. We raised our concerns about the new Personal Independence Payment benefit as people have already started coming to Aspire because of delays throughout the whole system. Kate will be raising these issues in Parliament when the opportunity arises.

Aspire will continue working to influence all political parties on behalf of the 40,000 people with SCI in the UK and ensure that that their experiences and views are represented in the process. This is a crucial time to be speaking to Parties who are beginning to shape their offering to the electorate in the lead up to the 2015 General Elections.  

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.

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.

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.