Local authorities are failing to act on a mounting housing crisis in adaptations and accessible housing for people with muscle-wasting conditions, Muscular Dystrophy UK has warned in a new report.
We told MPs, Peers and housing leaders in Parliament on 17 September that a lack of wheelchair-accessible housing is having a devastating impact on households, with some accruing huge debts and spending life-savings in order to adapt their homes. Others are being left to struggle in properties in which they can’t use essential facilities like bathrooms and kitchens.
Our Breaking Point report reveals that for 70 percent of people surveyed who had been offered a home by their council, the property was not suitable. Over a third faced serious financial hardship due to trying to adapt their homes. Many have accrued major credit card debt or used up life-savings.
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Shocking findings include:
- A family whose son has Duchenne muscular dystrophy were forced to pay out £70,000 in life-savings and rack up £15,000 of credit card debts to adapt their home
- A 60-year-old man with Charcot-Marie-Tooth Disease was denied £8,000 support to adapt his bathroom, which has left him unable to bath or shower for over a year
- A university lecturer with limb-girdle muscular dystrophy had no choice but to live in a home for elderly people due to a lack of accessible housing options when she moved to take a new job
- Parents forced to risk carrying children with muscle-wasting conditions up and down the stairs.
Country-wide Freedom of Information requests submitted by Muscular Dystrophy UK uncovered councils with over a hundred households waiting for wheelchair-accessible homes, without a single available property on their housing registers. This includes 166 families or individuals waiting in Harlow, 155 in Blackburn and 122 in Camden.
What needs to happen?
The maximum grant of £30,000 to make adapt a home has not risen since 2008, and many adults are being refused financial support to adapt basic facilities, before paying out thousands of pounds themselves.
We are calling for local authorities to act urgently with the support of the Department for Communities and Local Government (DCLG). They must ensure:
- Increase the amount available to households through the Disabled Facilities Grant, ensuring this rises in line with inflation
- All local authorities should have policies to provide discretionary top up payments in cases where families cannot afford additional costs
- Local authorities to ensure new developments have at least 10% of houses that are build to the Lifetime Home Standard (a standard for accessible homes)
Julia Carr from Newcastle, whose son Fraser (15) has the life-limiting muscle-wasting condition, Duchenne muscular dystrophy. Her family spent all of their savings and were left with £15,000 of credit card debt after adapting their home.
At a time when we should have been enjoying family life and making memories we were stressed and anxious and for the most part terrified that we would not be able to provide for our child’s needs. Our children were denied the care-free happy years which they deserved, and given that Fraser’s condition is life limiting this is particularly hard to bear.
John Harrison (61) from Winsford, Cheshire has not been able to wash himself for over a year, and has had to rely on his wife’s help. The bath and shower in their home are completely unsuitable for John, who has the muscle-wasting condition, Charcot-Marie-Tooth disease.
I have quite simply exhausted my funds in adapting my home, and I cannot afford to put up a further £8,000 to change the bathroom. So for a year now I haven’t been able to have a shower or bath. This is really taking its toll but without support from the council and without sufficient personal finance, I’m unable to make the adaptations that I need.
Press coverage of the report
Muscular Dystrophy UK’s Breaking Point report on housing issues was covered in national and regional media:
- Channel 4 News: Annette Rush talk about the battle for a home suitable for son, Joe (13), who has Duchenne muscular dystrophy. Nic Bungay, Muscular Dystrophy UK’s Director of Campaigns, Care and Information, spoke about the wider issues and the changes the charity is calling for. You can view the clip of the report here.
- Good Morning Britain: featuring the report – you can view the piece here from 26 minutes onwards.
- ITV London at lunchtime and on the 6pm news: They spoke to Romina Puma about the struggles she faces in her high-rise flat, with Nic Bungay highlighting the report’s calls for action.
- ITV Calendar (Yorkshire) interviewed Dr Chetna Patel about the difficulties she encountered when she relocated from Scotland to Sheffield.
- The story was also covered by many national and local media outlets, including: BT online, Western Morning News and Birmingham Post.
Meeting with the Communities and Local Government Minister
Muscular Dystrophy UK and three of our supporters – Hannah-Lou Blackall, Sarah Croft and Fleur Perry – joined Mary Glindon MP, Vice Chair of the All Party Parliamentary Group for Muscular Dystrophy, for a meeting with Communities and Local Government Minister, Marcus Jones MP, this evening to discuss the findings of the report and to convey personal experiences of trying to secure accessible housing.
The Minister acknowledged the variable picture across the country of accessible housing needs for people with muscle-wasting conditions and committed to taking the concerns and recommendations from the Breaking Point report into the Communities and Local Government’s spending review discussions with the Treasury.
The Minister commented after the meeting:
It was important to meet representatives of Muscular Dystrophy UK and listen to their concerns. This Government is committed to helping disabled people live as comfortably and independently as possible in their own homes.
For more information and to get involved in the Breaking Point campaign, please contact Peter Sutton on email@example.com or call 020 7803 4838.