Families of children with spinal muscular atrophy (SMA) often choose to modify their home. These changes can help meet children’s specific needs by improving safety, accessibility, and independence.
When should I make home modifications?
Home modifications may help improve safety and accessibility for children with SMA. Talk to an occupational therapist for tips on changes that will be most helpful to your child. Experts recommend that parents should make changes over time, not all at once.1
Decisions about modifications should depend on what your child needs now and in the near future. Making changes based on what they may not need can lead to unused and expensive modifications.
Things to think about before making changes to your home include:2
- How long you plan to live in your house
- What will happen if your child’s abilities change
- If equipment can be used instead of a home modification
- What financial resources are available
- Whether the changes are temporary or permanent
What changes can make the home more accessible?
Every family and child with SMA is different. Not every child with SMA will benefit from the same modifications. As children age, their needs may change, and they may benefit from different changes. Talk to an occupational therapist to identify changes that are right for your family.1
Common modifications that families use to make the home more accessible include:
Doorways and entrances
Wider doorways and hallways can make it easier for children in wheelchairs to move between rooms. You can widen doorways by taking off the door and molding.
If you still want privacy, you can replace the door with a curtain or a double-hinged door that swings completely out of the doorway. Replacing doorknobs with handles or levers can also help children with less hand strength.1,3
Having 2 accessible entrances to the home is important in the event of a fire. Ramps with guardrails can make these entrances accessible.
Bathroom
Grab bars and roll-in showers can make it easier for children in wheelchairs to use the bathroom. Adjusting the heights of toilet seats, towel rods, and sinks can also be helpful.
The sink should have enough space beneath to fit a wheelchair. Shower or bath chairs and benches can make bathing easier and safer. Using smaller tiles can make the floor less slippery.1,3,4
Bedroom
Lower beds can be easier to get in and out of from a wheelchair. This can be done by using a half-height box spring or no box spring. A hospital bed is often a good option since the height is adjustable.1,3
Kitchen
Moving common items to more accessible spots can help children be independent in the kitchen. This can be done by using a rolling cart, putting dishware in low drawers, or installing pull-out shelves in cabinets. Counters and sinks should be at a good height and have enough space below to fit a wheelchair.1,3
What assistive technologies can improve accessibility in the home?
Accessibility products are often cheaper than major home renovations. Consider these options when deciding what changes to make. Examples of assistive technologies include:1,5
- Smart home controls that regulate lights, thermostats, locks, and other household items from a smartphone
- Floor-to-ceiling poles to help people stand from a seated or lying position
- Portable ramps, showers, lifts, and wheelchair stair climbers
- Automatic door openers
- Stationary or mobile shower chairs
How can I find help paying for home modifications?
Some changes may be cheaper, smaller projects. Others may require larger renovations, like expanding rooms. Sometimes, a contractor may be needed to perform these major changes. In these cases, the changes can get expensive. Many resources can help families afford these changes.
Places to go for help paying for home modifications include:3,6
- Your insurance provider
- A tax advisor to determine if any changes are tax-deductible
- State loan programs and government agencies
- CureSMA equipment loans
- Your local Muscular Dystrophy Association (MDA) chapter
- Other SMA organizations and support groups