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A 2020 vision for accessible housing and independent living

SIA’s Advocacy Team is committed to supporting spinal cord injured (SCI) people to secure the vital NHS Continuing Healthcare (CHC) and Social Care provision they need to go on to lead fulfilled lives.

However, unless they have a home that is designed and equipped to enable them to undertake life’s basic daily functions with as much independence as possible, quality of life is undermined and the level of assistance required from Social Care and CHC is much greater than it might otherwise need be. On 25 June 2019, the then Prime Minister Theresa May announced[1] a range of measures to address what she described at the time as “the injustices faced by disabled people”. One of the main pillars of the package of measures was a commitment to consult on mandating higher accessibility standards for new housing. Sadly, this consultation didn’t materialise before the General Election in December 2019 and, at the time of writing, we have heard nothing more about it from the incoming administration.

Participants in independent research published[2] by Aspire in 2016 described how living in inaccessible housing compromises their health and quality of life on numerous levels. Hugo, a research participant with an SCI put it like this:

“When I was in rehab, I learned to do a lot of things. As soon as I came out of there, I went backwards instead of forwards. I went backwards because I got stuck basically … this is down to living here [an unadapted house]. It means I’m losing what I learnt, my health is suffering and I’m worried I’ll end up back in hospital. I don’t want that and am doing all I can to avoid it. But the house puts a limit on how much you can do.”

Another participant, Vicky, explains:

“Because of the house I live in, I’ve lost all my muscle mass that I built up in rehab. I’ve just got nothing and I’m so weak. I’ve lost it all. My health is going downhill, physically and mentally.”

Marsha, another research participant says:

“If I had to pinpoint one thing that’s affecting me, it’s loss of independence as a result of living in this house. I’ve always been a very independent person. But because of the problems with the house, I can’t go anywhere without someone having to help me out and get me into the house again.”

Research participants now living in accessible housing are very clear about the benefits to their lives. Robert explains:

“The main point is that I don’t need to worry about access, showering, going to bed or being stuck in the house. I can put all that aside and put that time into doing stuff I need to do; look for a job, playing rugby, getting out and about.”

Boris reveals how moving to an accessible home has transformed his outlook on life:

“Don’t get me wrong, I’ve had the thoughts in my head a few times that I’ve wanted to top myself. The thought has been there before when I lived in a house that wasn’t adapted. But now I’ve moved here, because of this, I feel like I am moving forward, progressing and getting better. My mentality is a lot better now than what it was in the old house. My moods have been a lot better, I’m not snapping, not losing my temper. I’m happier and have a better quality of life. I’m absolutely loving this place. The old place was killing me and now because of moving in here I have a future.”

For many SCI people and others who require an accessible home, the prospect of obtaining one remains a distant dream. Evidence from a Freedom of Information[3] (FoI) investigation carried out by Aspire revealed an acute shortage of the accessible homes we will need to house our increasingly disabled population. From the data provided by the English Local Authorities that responded to the FoI request, it will take decades to house all wheelchair users currently on housing lists in many areas. According to the English Housing Survey, only 7% of existing homes have the basic accessibility features that would enable a wheelchair user to even visit a home, let alone live in it. Evidence published by Habinteg Housing Association[4] in 2019 revealed that outside of London (where the provision of accessible homes has been mandatory since 2004), the majority of local plans fail to set any requirement for accessible housing, and only 1% set a target for wheelchair accessible properties.

It seems clear that the current failure in national housing and planning policy to address the need for SCI people to have a home that supports them to lead independent and healthy lives, will inevitably increase pressure on already shrinking CHC and Social Care provision and overstretched healthcare services, both at the community and acute levels. The need for Government to urgently fulfil its commitment to consult and introduce higher mandatory accessibility standards for new homes, is self-evident. But more than this, what SCI people and the disabled population more widely really require, is an end to the siloed, uncoordinated approach towards disability policy, that results in their lives falling through the gaps between health, housing and care regimes. What we need is a new 2020 vision, that has at its heart the goal of facilitating all disabled people to lead fulfilling and independent lives, which integrates funding and support packages whilst centrally driving the provision of homes and communities geared to enable independence and inclusion in home-life, community and the economy.

SIA will be working with Aspire and Back Up to launch a widespread and comprehensive engagement programme in 2020, to hear directly from SCI people about their lives and what is enabling or obstructing their ability to lead fulfilled lives. We would love you to contribute to this – please email [email protected] and tell us about your experiences.

Andy Shipley
Public Affairs Officer

[1] Theresa May’s policy announcement 25 June 2019: https://www.gov.uk/government/news/pm-launches-new-drive-to-tackle-barriers-faced-by-disabled-people?utm_source=2c37998e-ccb0-4c2e-80c7-cd371257cf1a&utm_medium=email&utm_campaign=govuk-notifications&utm_content=immediate#content

[2] Aspire research: ‘The health and wellbeing of spinal cord injured adults and the family: Examining lives in adapted and unadapted homes.’ https://www.aspire.org.uk/examining-lives-in-adapted-and-unadapted-homes

[3] Aspire Freedom of Information request: https://www.aspire.org.uk/News/wheelchair-accessible-social-housing

[4] Habinteg research: https://www.habinteg.org.uk/latest-news/housing-plans-risk-accessible-homes-crisis-for-england-says-new-research-1285