Why we’re calling for change to housing adaptation support

The systems to help people living with MND adapt their homes to meet their new needs aren’t working – and it’s placing an extra burden on families at the worst possible time.

“We commissioned a report into the financial impact of MND,” says Susie Rabin, our Head of Policy and Campaigns. “Housing adaptations came out as one of the biggest costs people with MND were facing.”

As a result, we spoke to 850 people, including people affected by MND, health and social care professionals, councilors, and MND Association staff about their experiences.

People told us how important housing adaptations are. Done in the right way, at the right time, they can give people living with MND precious independence. But the reality is families are struggling to adapt their homes. Funding, when it is available, takes too long to arrive.

Freedom of Information requests were sent to local authorities in England, Wales and Northern Ireland, asking about their performance on Disabled Facilities

Housing adaptations are one of the biggest one-off costs people with MND face.

Grants. “Some are doing great work,” says Susie. “But in other areas, people aren’t so lucky. MND often progresses fast and long processes mean support comes too late.”

As we discovered, too many local authorities are falling short – with only 60% paying grants within a year.

That’s why, we’ll soon launch a new campaign calling for every family to get the support they need, when they need it. We’ll be pushing for local authorities to commit to adopting best practice measures. These include speeding up the assessment process and introducing a register of accessible homes to help families to find new accommodation. “Please look out for the campaign,” adds Susie. “We’ll need your support!”

Here’s what 850 people told us THE CHALLENGES...

Time taken to access services This was the most commonly referenced challenge at MND Campaign events

The cost of adaptations or moving 96% of people with and affected by MND mentioned this in our survey

Lack of availability of accessible homes 83% of professionals mentioned this in our survey

Emotional burden of adapting or moving home 87% of professionals mentioned this in our survey

Shorter waiting times

Shorter waiting times to access services

...AND HOW TO OVERCOME THEM Better support

Better support, services, financial help and information for people with MND and their families


Fundraiser beats the odds... Richard Pollins was born with no legs. There were fears that he’d never walk. But in March, he covered 40km on artificial legs – raising over £60,000 for MND research, in honour of his mum, who was diagnosed in 2016.

Founder walks 115k at 79

MND Association founder Colin de’Ath was given just years to live when he was diagnosed with MND in 1978. Fast forward 40 years and, in April, Colin completed a 115km sponsored walk to mark our 40th anniversary and give something back.

Christmas cheer

Good news! Our Christmas appeal has raised over £160,000. The campaign focused on the communications aids which our Communication Aid Co-ordinator Matthew Hollis provides to people like Penny, who was diagnosed with MND in 2018.

A huge thank you to Penny, Matthew, and everyone who supported this appeal.


Greater availability of accessible homes

Thanks to you, families living with MND aren’t left struggling. Please help us support them.

Registered Charity No. 294354 © MND Association 2019 Your Impact 19JL


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