MND Association Campaigning in UK for More Accessible Homes for ALS, MND Patients

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by Mary Chapman |

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The Motor Neurone Disease Association (MNDA) has begun a campaign in the U.K. calling for more accessible homes for people with motor neuron diseases, which includes amyotrophic lateral sclerosis (ALS), and a better system for delivering housing adaptations.

Called Act to Adapt, the initiative follows the release of an MNDA report of the same name indicating that motor neuron disease (MND) patients in the U.K. are becoming trapped in inaccessible homes because local governments have not provided necessary adaptations. Some patients have died while waiting for alterations to be made, according to the organization, and there are fears the pandemic has worsened the situation.

“Very simply, the cost, lack of funding, and timescales involved are causing people with MND, their families and thousands of others with terminal illness, real hardship. MND is a progressive condition — a third of people die within a year of diagnosis, and half within two years, and during that time symptoms worsen and needs increase. People living with MND don’t have the luxury of time to wait,” Alex Massey, MNDA policy manager, said in a press release.

“And of course the lockdown is likely to have exacerbated the situation, preventing work being carried out and slowing down processes as local authorities were forced to focus on other priorities,” Massey added.

In England and Wales, local governments in England and Wales assist in providing some housing adaptations for residents, while in Northern Ireland, the public housing authority Northern Ireland Housing Executive provides assistance in this area. To qualify, a person must show that the requested adaptations are necessary, appropriate, reasonable, and practicable.

Programs such as Disabled Facilities Grants also provide support. The grants are means-tested — they are available to those whose incomes are deemed insufficient — but don’t consider the added financial burden of dealing with a progressive and disabling condition such as MND, the organization said. In many cases, the MNDA added, homeowners must fund adaptations themselves or make up the difference between grant funding and work costs.

In its campaign announcement, the MNDA features 36-year-old Carolyn Daglish, a resident of England who was diagnosed with MND in February. By then, she was using a wheelchair and couldn’t get upstairs in her home. Because she was deemed ineligible for adaptation funding, she and her husband, who have two young daughters, ended up footing the bill.

“Carolyn came out of the hospital and I was having to shower her in the wheelchair in our camping pod because she couldn’t use the over-bath shower. We couldn’t get funding to have our bathroom converted to a wet room because we have savings,” said Daglish’s husband, Lee.

“In the end, I bought all the materials and fitted the wet room myself. I did the same with a ramp for the front door rather than wait for someone to come and assess it and then go through the process,” Lee added. “We feel like we’ve been penalized for working hard, saving, and wanting to provide for our family.”

For the campaign, the MNDA is asking supporters to raise awareness by sharing experiences, posting educational infographics on social media, and emailing local government officials.

The Act to Adapt report includes recommendations for local and national governments to help ALS patients and others in need of accessible housing. Those recommendations include fast-tracking support for individuals with a terminal illness, removing the means-test for low-cost and high-impact adaptations, and maintaining a register of available accessible homes.

“During our research we unearthed examples of good practice so we know it can happen, but sadly, it’s not universal — yet,” Massey said. “We want to see that change and for authorities to implement the best systems possible to ensure adaptations can happen in a timely, efficient manner with minimum impact on the people they’re supposed to help.”