Background to the campaign

Muscular Dystrophy UK’s Breaking Point campaign aims to highlight deficiencies in the housing available to people with muscle wasting conditions and ensure that all individuals receive the accessible housing they’re entitled to.

Our Breaking Point report found that 70 percent of those surveyed had been offered an unsuitable property by their council. Over a third had faced financial hardship due to trying to adapt their homes, accruing major credit card debt and using up life-savings in the process.

Muscular Dystrophy UK’s 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 debt to adapt their home.
  • A 60 year-old man with Charcot-Marie-Tooth disease was denied £8,000 support to adapt his bathroom, which left him unable to bathe 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 stairs

What happens next?

The maximum grant to adapt a home is currently set at £30,000, a figure that has not risen since 2008. Many adults are being refused even this small sum, forcing them to pay out thousands of pounds themselves.

We are calling on local authorities to act urgently. With the support of the Department for Communities and Local Government (DCLG), they must ensure:

  • An increase in the amount available to households through the Disabled Facilities Grant, ensuring this rises in line with inflation.
  • That all local authorities have policies to provide discretionary top up payments in cases where families cannot afford additional costs.
  • That local authorities ensure new developments have at least 10% of homes built to the Lifetime home Standard (a standard for accessible homes).

How you can get involved

You can write to your MP or book a meeting at your MP’s advice surgery to tell them about your experiences with housing adaptations and finding accessible housing so that they can raise awareness of the issues and call for improvements to the system.

Contact us for support and information

For more information and for free support to try to find accessible housing and grants for making your home accessible, you can contact our Freephone helpline on 0800 652 6352 or email info@musculardystrophyuk.org

For more information on our Breaking Point campaign, please contact Clare Lucas on c.lucas@musculardystrophyuk.org or call 020 7803 4838.

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