Adults Living with SMA, Home
Adults Living with SMA, Home
Last reviewed: August 2022
Whether you’re reviewing your current home and thinking about making adaptions, moving away from home for the first time or looking for a new place, we hope this checklist of things to think about and how to get the support you need to will be useful.
- Getting between rooms: Are doors and hallways wide enough for a walking frame, manual chair or powerchair? Sometimes radiators narrow hall widths. Which way do doors open? Are the handles easy to use? Is there enough turning space from the hall into the rooms leading off?
- Getting around rooms: When the furniture is in place, is there space in each room to go past with a walking frame, turn in a wheelchair? How could space be increased if needed? Could redesign make a difference?
- Flooring: Are there rugs that could be a trip hazard? Is the flooring suitable for a walking frame or wheelchair?
- Moving between floors: If there is an upstairs floor, is it wheelchair accessible ie: is the landing wide enough for your wheelchair and could the bathroom be adapted to offer the space and equipment you need? Or could space be taken off an adjacent room to make the bathroom larger? Can you get up there? If not, what options could there be for a downstairs bedroom and bathroom? Would there be space to fit a through floor lift?
- In the bathroom: Can you get in and out of the bath or shower safely? Can you get on and off the toilet safely? Is there enough room for a transfer from a wheelchair? What other options might work – e.g. is there room for a walk-in / roll-in shower if needed? Is the ceiling structurally sound enough to take a ceiling hoist if needed?
- In the bedroom: Can you get in and out of bed safely? Is there room for any equipment you use? How easy and ‘private’ is it to get between the bedroom and the bathroom?
- Storage and equipment: Is there enough space for your equipment – both when it’s being used and when it’s being stored or charged? Are there enough electrical points in the right places?
- Is an extension a possibility? Sometimes it’s possible, for example, to convert a garage
- Can you get safely in and out of the doors? Are there steps? Are the doors wide enough for a walking frame, manual chair or powerchair? Is there a threshold that could be a trip hazard or prevent easy wheelchair access? If there is a porch/lobby, is there adequate space between the two doors to access the property in a wheelchair? Can you open the door yourself? As a temporary measure, portable ramps may overcome difficult access. These can sometimes also be used for houses that open straight on to the pavement.
- Do there need to be any rails at the doorways or along any paths or steps?
- If there are steps and you can walk, are they shallow enough to manage?
- If steps are low and the overall slope is gentle, could they be replaced by a sloping path?
- If it’s impossible to build a ramp of the correct gradient, could a step lift be installed? This is a platform with safety rails and a folding front ramp which rises hydraulically.
- If the approach to your house is steep, is there space for a short-rise lift?
- Are the paths firm, slip resistant and reasonably smooth?
- If you use a powerchair and there is an outside area of some kind, could there be a firm patio which would be better to use than a grass area?
- Are there any gates you would need to manage? If so, for independent access these shouldn’t be spring-loaded.
- If there is an outside area, can you make it a place you can enjoy more? Do you need help and ideas to do this?
- If you need to use a powerchair and either have, or will have, a Wheelchair Accessible Vehicle (WAV) (see the WAV section on this page), how closely can you park to your home? Will you be able to get in and out of a vehicle safely?
- If you’re hoping to have off street parking, is there enough room? There needs to be enough space for the vehicle, the tail lift, and for you to manoeuvre your powerchair in and out between the vehicle and your home. This usually means allowing at least 1,200mm to the side and rear of a standard car parking space. Is there a dropped kerb for your vehicle to go out onto the road? If not, you may be able to apply for one:
- If you have the space, what about a car port? Especially useful for rainy days.
- If your only option is on-street parking – would it be a possibility near you? If so, you may be able to apply for a designated space:
- Geographical location?
- Close to family / friend / support networks?
- Transport links to work / leisure activities?
- On your own?
- Sharing with a partner / flatmates / live-in PAs?
Be aware that if you move area, if you receive a personal budget (PB) in support of your care and support needs, your PB will need to be transferred to your new area local authority, and this will involve a reassessment of your care and support needs. You will need to let your current local authority know that you’re moving so that they can contact the appropriate department in your new area and arrange for their own assessment of your needs. There are no guarantees that you’ll receive the same level of care and support, each local authority operates differently and what they offer can vary.
If you’re a tenant looking for a more accessible local authority or Housing Association property, you will need your community OT’s support. If you plan to move to a different area and need a local authority property which has been adapted, families already living in the area have priority, so you may have to wait a long time for a suitable home to become available. You will also need to let your local authority know that you’re moving so that they can contact the appropriate department in your new area and arrange their own assessment of your needs.
Disability Horizons “Guide to Finding an Accessible Home” can be downloaded free.
Depending on your circumstances, options may be:
- renting a Council or Housing Association home
- renting from a private landlord
- buying your own home.
Whichever, you’ll need a good idea of what accessibility you need now – and thinking ahead. What is essential for you to get around and live your life as independently as possible and what, though desirable, might you compromise on or ‘fix’ later.
It may be helpful to talk to your OT or Social Worker if you have one – they will be aware of the options that may be available in your area, and / or be able to connect you with other local support. They may also be able to provide supporting letters outlining your need for suitable accommodation.
Otherwise, you can visit or call the Local Council offices for advice and information about applying for Local Council or Housing Association accommodation. Each Local Council will be able to advise if you meet any requirement to have ‘local connections’ and if you’re eligible to apply under ‘priority need’. In some parts of England and Wales, councils have an Accessible Housing Register so it’s worth asking about this when you contact them.
Citizen’s Advice – general information about a range of aspects of housing and finding accommodation
Local Council – find yours
Equality and Human Rights Commission – your rights to accessible and adaptable housing
Disability Horizons – “Ultimate Guide to Finding an Accessible Home”
Shelter – information and support about housing issues
If you decide you want to try to adapt your current home, there are professionals who will guide you. You will need the help and support of the Local Authority community occupational therapy service that specialises in this area. They are part of Social Services. You can refer yourself, or request that your occupational therapist (OT) or physio refers you.
If you’re a private, local authority or Housing Association tenant, you must get your landlord’s agreement to carry out adaptations. Landlords must not withhold consent unreasonably, but they may be able to evict you if you make alterations without permission. When deciding whether to agree to changes, landlords can take into account factors such as the length of your tenancy, how much work is needed and whether permission is needed from anyone else, such as the person who owns the building. You may decide that it’s better to try to move. Your community OT should be able to guide you on how and when its best to approach your landlord.
Others who may be helpful are your social worker, medical team occupational therapist and / or one of the organisations listed in the Resources section below. It can be useful to talk with other individuals and families who have already been through the adaptations process (see tab below for some people’s reflections); ask us at SMA UK if we can put you in touch.
You may want to think about what Assistive Technology would make a difference and include this in your plans.
The adaptation process can be very long and does vary depending on your local authority. As a rough guide it involves these stages:
1. Referral to local authority social services community OT
2. Meeting with community OT to assess your needs and discuss possible options
3. Social services / community OT liaises with architect / housing surveyor on plans
4. Decisions made about adaptations and equipment
5. Social services / community OT look at plans with family
6. Plans adjusted
7. All relevant permissions sought
8. Builders quote for the work and a builder is chosen
9. Meeting held with the family, builder, OT, surveyor and any other interested parties (for example Housing Association officer) before work starts
10. Work starts
11. Social services / community OT and housing surveyor check completed work to sign it off and enable Disabled Facilities Grant (DFG) funds to be paid (see Costs and Funding section below)
12. Arrangements made to demonstrate use of any specialist equipment
Foundations – national network of nearly 200 home improvement agencies (HIAs) and handyperson providers across England. They offer holistic services, helping to improve a person’s wellbeing as well as practical solutions around the home.
Muscular Dystrophy UK’s Adaptations Manual – a comprehensive guide for anyone planning adaptations to their home.
Equipment Exhibitions: held around the country, where you can to talk with a range of providers – Equipment Exhibitions, Sport & Other Events
In England, Wales and Northern Ireland, this is the key potential source of financial help with the cost of home adaptations and potentially available whether you’re a tenant (as long as you have permission from the landlord) or a homeowner – more details below. If you live in Scotland potential funding is covered by Home Improvements Grants.
Some alterations qualify for zero-rating VAT, so the builder shouldn’t charge you VAT. This includes:
- widening doorways and passages
- extending or adapting bathrooms, shower rooms, wash rooms and toilets
- installing a lift.
There may be other items connected with your adaptations that can be zero-rated. For more information see:
- GOV.UK Financial Help for Disabled People – VAT Relief
- GOV.UK Work for Disabled People – VAT for Builders
or phone HMRC on 0300 200 3700.
Before it will approve a DFG, the council needs to agree that the work is:
- necessary and appropriate – to meet your needs
- reasonable and can be done – depending on the age and condition of the property
What Can DFGs Cover?
Applications can be made for adaptations such as:
- widening doors
- installing ramps
- improving heating
- environmental controls (for example, being able to control doors, home appliances, heating and lighting, using a remote control or switch)
- installing lifts
- building accessible rooms.
If possible, maintenance costs should be included in the DFG application.
If you have any electrical equipment, for example a lift, you can include an element for an extended warranty in your DFG application.
Who Can Apply?
You can apply if you intend to live in the property during the grant period (which is currently 5 years) plus either:
- you’re a tenant in the property (and have the landlord’s permission), or
- you own or part-own the property
You can also apply for a grant if you’re a landlord and have a disabled tenant.
If you’re not sure who’s best to apply, talk to your community OT about who owns your home and who needs to apply.
How Much Could I Get?
The grant awarded will depend on what adaptations are needed, and other eligibility criteria. Applications for those under 19 are not means tested.The maximum amount of money available varies across the countries and the total amount of money available for DFGs varies from area to area as do other criteria and rules. Your local council should publish information about their DFG system and how they allocate funds:
Check what’s possible with your community OT or local council, including any questions such as:
- How long should it take for a decision to be made?
- Once a decision has been made, how soon do I have to start making alterations?
- What happens if the adaptations cost more than the grant available?
- What if I want to move one day:
- Would I have to pay any money back? In all circumstances?
- How long would I have to wait before I could apply for another grant?
- Are any fees taken out of the DFG e.g. fees from architects / surveyors?
- What happens if my needs change in the future?
How Do I Apply?
Once your community OT has made their assessment, you can ask a Home Improvement Agency to help you with your DFG application. This is then forwarded to the Local Authority for approval.
If you’re unhappy about your DFG decision you can appeal through your local council. If you’re still unhappy you can complain to the local Government ombudsman.
For more information, see:
Other possible sources of funding:
Independence at Home – financial help for adaptations, special equipment and other services.
This will depend on the sort of housing you’re wanting and your circumstances – such as whether you work, which benefits you’re claiming and / or you’re entitled to, whether you have savings, whether you’re sharing costs with a partner etc. Some local councils can offer assistance towards deposits for pr
- Citizens Advice – advise on benefits, debt and financial issues or can put you in touch with appropriate local advisers.
- Independence at Home – financial help for adaptations, special equipment and other services
It’s essential that you know who’ll be responsible for maintaining your adaptations once they’ve been completed. This will vary depending on the type of adaptation, the type of property you have, and how the work was funded. It’s also important that you follow-up on guarantees to make sure they’ve been registered and are valid.
- Generally, if you’ve had a DFG you will be fully responsible for maintenance, repair and, if necessary, removal. If an item needs replacing at any time, another application can be made for a DFG – talk to your community OT.
- Some housing associations agree to maintain some adaptations in their properties but you will need to check this with your housing association.
- In council properties, the housing department is usually responsible for maintenance, repair and removal.
- If an adaptation has been provided on loan by your local authority rather than through a DFG, your local authority will be responsible for maintenance and repair.
- If your landlord made the DFG application, they will be responsible for maintenance and repair.
Independence at Home – financial help for adaptations, special equipment and other services.
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