Living with muscular dystrophy

Living in your own home


For many people diagnosed with muscular dystrophy or a related neuromuscular condition, a wheelchair will become essential at some stage. This will require having an accessible home environment.

Jane and Tracey

Adaptations, improvements or repairs to the home are a key part of making your home more accessible and safer. Often getting the right adaptations means that someone can remain in their own home for longer.

Local authorities have funds available to help out with the cost of adaptations. A Disabled Facilities Grant (DFG) is a grant provided by local councils to help meet the cost of adapting your home to enable you to continue to live there, safely. A grant is paid where the council considers the changes necessary to meet your needs and is satisfied that the work is reasonable and practical. (link to DFG page)

Moving into your first home

For young adults, moving out of the family home demonstrates your ability to be independent and make your own choices, and to take on board both the freedoms and responsibilities that living in independent housing can bring.

Young people may experience a number of problems finding housing and as a result, many choose to stay on in the family home. Young people with muscular dystrophy or a related neuromuscular condition may come up against additional barriers to finding or maintaining suitable housing, which could make it more difficult for them to move into their own home. However, with determination and the right support, it is possible.

Your own circumstances will vary according to your mobility, your care needs and the resources available, so you'll need access to information from a wide range of housing options.

Any young disabled people moving into their first home should consider housing which is near to medical facilities or community resources you use on a regular basis, such as college, shops or libraries.

If you need wheelchair access, then your new housing might need to be adapted or modified; you may also, for example, need ramps or hoists tracks. It is likely you'll require all facilities (living, eating and bathing areas) to be on one level.

If you do require particular features such as ramps, hoists and rails, suitable bathrooms, a certain room size or particular placement of electrical sockets etc, it is important to get help carrying out alterations. Remember to find out about how to get financial help to make the alterations.

Your new home will need to have space for carers to stay if needed. If a carer or home help is required, then you'll need to know what help is available to pay for this. Information about the Independent Living Fund (ILF), recruiting personal assistants and other assistance through Social Services will be important. Bear in mind that if you're moving home either permanently or for a period of time, for example to attend college or work, then your current carer may not want or be able to relocate.

Moving to a new area

If you plan to move to a different area and need a home which has been adapted, remember that priority is given to those already living in the area so you my have to wait a long time for a suitable house to become available.

There are also other considerations to be aware of, relating to your care and support arrangements. You should contact the Social Services department at your current local council to let them know you're moving. They will then contact the Social Services department in your new borough and the new team will then set up the same support and services you have been receiving. This will be on a short-term basis, so that there is no gap in your care and support services when you move. However, your new Social Services team will do their own health and social care assessment to decide what services and equipment you're entitled to, according to their own standards.

Also, if you receive direct payments, you may receive a different amount after you move, as hourly rates for providing services may differ from council to council. In some cases you may find that you have to pay for a service you used to receive for free or vice versa.

If you have been unsuccessful in obtaining the Disabled Facilities Grant that you believe you are entitled to, you can contact the advocacy team who help anyone affected by muscular dystrophy or related neuromuscular conditions who is experiencing difficulties obtaining the services they need.