Flora Butler: Time doesn’t stop for Motor Neurone Disease – so why does the Disabled Facilities Grant? | Policy blog

Being diagnosed with Motor Neurone Disease (MND) is often described as the worst day of your life. It’s a fatal, rapid condition that attacks the nerves controlling movement and, eventually, leaves people unable to even breathe. At such a time, for many people, having to adapt a home can become a relentless battle. With the Motor Neurone Disease Association launching a new campaign on housing adaptations later this year, their Senior Policy Advisor, Flora Butler, asks if the clock doesn’t stop for MND, why does it for the Disabled Facilities Grant?

Why speed matters

MND can progress at a terrifying speed. A third of people die within a year of diagnosis; half within two years. People don’t have the time it takes to go through the current process of the Disabled Facilities Grant (DFG) system, which is designed to fund essential home adaptations. It’s too slow.

Families often face months of bureaucracy and assessments before work can even begin, and some people with MND have died before adaptations are completed, which is unacceptable.

This is why the MND Association is calling for all local authorities to fast-track DFG applications for those with rapidly progressing, life-limiting conditions like MND.

Toll of inaccessible homes

This is why MND Association also stands with Habinteg in saying accessible housing is not a luxury, but a basic right. Inaccessible homes accelerate decline, increase risks of falls, and severely impact mental health and wellbeing.

One carer told us: “My husband ended up in a hospice after hospital because it took so long to get equipment and a grant for a wet room. His MND got worse and escalated as he couldn’t use his home properly. He was only able to use the wet room for two months before he died.”

This is a devastating reality for many families, caused by a system that moves too slowly for people whose condition won’t wait.

Future-proofed standards

The solution isn’t just faster grants, but better homes from the start. England’s Part M Building Regulations sets out three levels of accessibility for new homes:

·       M4(1) : Basic visitable homes with step-free access and a ground floor toilet.

·       M4(2) : Accessible and adaptable homes, with step-free access, wider doorways, space for future adaptations like stairlifts, wet rooms, and through-floor lifts.

·       M4(3) : Wheelchair user dwellings, fully accessible throughout.

Many organisations, including Habinteg , have called for M4(2) to become the mandatory minimum for all new homes. The Government agreed in 2022 but has not completed the one short technical consultation to make it happen.

Now, research from Habinteg shows that 70% of new homes planned over the next decade won’t be required to meet the M4(2) or M4(3) standards , leaving them inaccessible to many older and disabled people.

Let’s fix the DFG

The maximum limit for the DFG in England remains £30,000. This amount rarely covers major adaptations like through-floor lifts or house extensions, particularly given today’s construction costs.

In a recent survey on DFGs, we found that 33% of people with MND said the grant they received only ‘partially covered’ or ‘barely covered’ their adaptations, or ‘did not cover the required adaptations at all’.

We believe a reformed DFG system, alongside more accessible housing, would improve outcomes for disabled people and save public money long-term by reducing crises, hospital admissions, and premature moves into care settings.

That’s why, later this year, the MND Association will publish proposals for fixing the broken DFG system.

A decade on – what’s changed?

While a decade has passed since the introduction of M4(2) accessible and adaptable dwellings and M4(3) wheelchair user dwellings into building regulations, little has improved:

·       55,249 people are waiting for an accessible social home.

·       1 in 4 people with accessibility needs still live in inaccessible homes.

·       In London, only 3% of homes are visitable by people with mobility impairments, compared to 9% across England.

·       In England, the average time from application for a large adaptation to its completion is 375 days.

We cannot afford to waste another 10 years. As time is running out the moment the moment someone is diagnosed with MND, the MND Association is calling for:

·       Mandatory M4(2) standards for all new homes, with local targets for M4(3).

·       A reformed DFG , with upper national limits reflecting inflation and the real costs of construction.

·       A fast-track, no-means-tested DFG process for people with MND and other rapidly progressive conditions.

A reformed housing system, built on accessible design and fast, fair support, will give people with MND dignity, control of their lives and a chance to stay in the place they call home.