Adapting your home for a muscle-wasting condition

Most families come to home adaptations later than they would have liked. It is an uncomfortable subject to open when things are still manageable, and it is easy to put off until something makes it urgent. By then the options have narrowed and the decisions are being made in a hurry.

Why it helps to start before you need to

With a progressive condition, what works this year may not work in two. Planning around the situation as it is today can mean paying twice: once for the adaptation that suited then, and again for the one that suits now.

Building work also takes longer than anyone expects. Assessment, recommendations, grant applications, quotes, planning where it applies, and then the work itself. Starting the conversation early is not about rushing into changes. It is about having time to make good ones.

What usually needs to change

Getting in and out of the house. Approach, thresholds, door widths and somewhere level to arrive at.

The bathroom, which is where most adaptations begin. Level access showering, space to be helped if help is needed, and equipment that suits the person rather than the room.

The bedroom, and whether it stays where it is. Moving a bedroom downstairs is common, and it raises questions about where everyone else sleeps and whether there is a second toilet.

Moving between floors. Stairlifts, through-floor lifts, or reorganising the house so that they are not needed.

The kitchen, where worktop height, storage and reach all matter for someone who wants to keep doing things for themselves.

Controls around the home. Lighting, doors, curtains and heating can all be operated in ways that do not need grip or reach, and this has changed a lot in recent years.

Paying for it

If you live in England or Wales, a Disabled Facilities Grant may be a route to funding major adaptations, and an Occupational Therapy assessment is often part of the process. Funding arrangements differ elsewhere in the UK, so it is important to check the scheme that applies where you live. The OT report sets out what is needed and why. Our housing and equipment assessments can provide that functional evidence where an independent assessment is appropriate.

How much is available depends where you live, and the schemes work differently across the four nations. Grants are means-tested, although a child under 18 can get one without their parents being means-tested. Muscular Dystrophy UK’s guidance on housing adaptations sets out the current figures and the route in each nation.

Two practical points worth knowing. Do not start building work before the grant is approved, because the council may refuse to pay for work already under way. And if you are going through your local authority, ask whether they will accept an independent report before you commission one privately, because the answer varies.

Where an Occupational Therapist fits in

General guidance tells you what is possible. An Occupational Therapist works out what applies to your house and the person living in it, which is the part no guide can do for you. Our OTs visit, look at how the day actually goes, and set out recommendations you can take to a builder or put behind a grant application.

Our Director, Matthew Box, helped contribute to Muscular Dystrophy UK’s adaptations manual for children and adults living with muscle-wasting conditions. This is familiar ground for us.

We work with children and young people and with adults, across the UK.

Get in touch and tell us a little about your situation, and we will explain what an assessment would involve and what it costs.