Adapting your living environment to meet your changing needs will become a necessity as the ALS progresses. Environmental modifications can help you to stay safe and retain your independence for as long as possible. They can also lower your caregiver’s risk for injury, by making tasks such as assisting with transferring and repositioning less physically taxing.
Identifying needs and solutions
Home modifications can be permanent or temporary, low-‐tech or extremely sophisticated. Some are easy and inexpensive to implement; others require major renovations and are costly. Many families rely on a range of solutions to meet their needs. Soon after your diagnosis, you will want to give some thought to your priorities and your budget for adapting your home. An occupational therapist can offer suggestions for addressing potential problem areas. You may also want to consult with a contractor who is knowledgeable about home accessibility if you are thinking about making permanent structural changes to your home. Prioritizing your needs and identifying solutions that work within your budget helps with financial planning and also gives you the necessary lead time to implement planned changes.
Planning for accessibility
Three common needs that you may want to address in your planning include getting in and out of the house, moving throughout the house, and ensuring safe access to bathing and toileting facilities.
Getting in and out of the house
You may need a ramp to get in and out of the house once using a wheelchair becomes necessary. Temporary ramps made of aluminum or steel can be rented or purchased. A permanent ramp constructed of wood or cement may offer a more custom solution, but is usually more expensive. Check with your local authorities and obtain any necessary permits before installing any ramp.
Ramps must have a gradual slope for safety and ease of use. The guideline is that for every inch of rise (i.e., the vertical height from the ground to the entrance), a minimum of 1 foot of ramp is required. So, for example, if your rise is 4 feet (48 inches), you will need a ramp that is at least 48 feet long. All ramps must be a minimum of 36 inches wide, and they must have railings. There must be a solid level surface (landing) at both the top and the bottom of the ramp, and if the ramp is longer than 30 feet, a landing at a mid-‐way point is required too. Consider whether the entrance you intend to use (and the surrounding property) can accommodate a ramp that is in compliance with these standards. It is possible that no entrance is a good candidate for a ramp, in which case you may need to consider other options, such as a wheelchair lift.
Moving throughout the house
Another concern is accessibility once you are inside of the house. If you live in a multi-‐story home, you need to think about how you will get upstairs. You may decide to focus on modifying the first floor (either temporarily or permanently) so that you do not have to go upstairs at all. Or, if the staircase is wide enough and your budget allows, renting or purchasing a stair lift system may be the answer. (Keep in mind that in order to use the chair lift system, you must be able to transfer into the lift chair and hold your upper body upright.) Installing an elevator or platform lift is also a possibility.
Other considerations when moving throughout the house include doorways, hallways, and turning areas:
- Doorways. You need at least 32 inches of clearance for a wheelchair to pass through a doorway. Replacing standard hinges with swing-‐clear hinges may give you the clearance you need, or you can consider removing the door and door trim entirely.
- Hallways: At minimum, hallways must be 36 inches wide to permit wheelchair clearance.
- Turning areas: For a complete U-‐turn (360 degrees) in a wheelchair, you need a turning circle of clear space that is at least 5 feet in diameter. For a T-‐turn (180 degrees), you need a minimum of 3 feet of clear space in each direction of the “T.”
Shower and toilet access
Bathrooms are often small spaces with narrow doorways, which can make accessing them problematic for a person in a wheelchair. Additionally, getting in and out of the bathtub or shower safely can be difficult. A bathroom renovation that includes adequate space for maneuvering, a roll-‐under sink, and a curbless shower is one possible solution, but may be out of reach financially for many families.
Equipment can be used to facilitate safe access to the bathtub or shower and toilet. A sliding bath transfer system is a versatile piece of equipment because it can be used as a transfer bench for accessing the bathtub, a roll-‐in shower chair, an over-‐the-‐toilet commode, and a bedside commode. A raised toilet seat with arms can make using the toilet easier. To promote safety, install grab bars near the toilet, in the shower stall and by the bathtub. The grab bars need to be screwed into studs or blocking material behind the wall to provide adequate stability. An occupational therapist can advise you about the placement of the grab bars, and about what pieces of accessibility equipment might be most helpful.
Funding accessibility modifications
Home modifications and accessibility equipment are usually paid for by the family, out of pocket. (Medicare will cover the costs of some very basic types of durable medical equipment, such as a hospital bed or commode chair, but in general, insurance coverage for accessibility equipment and modifications is limited to non-‐existent).
You may be able to offset costs through a grant program or a low-‐interest loan program. If you are a veteran with ALS, you are eligible to receive a grant for home modifications through the Veterans Administration’s Specially Adaptive Housing (SAH) program. Alternative financing programs (AFPs) give people with disabilities low-‐interest loans to fund accessibility equipment and home modifications. Visit www.resnaprojects.org/afp to find out if there is an alternative financing program in your state. Your state’s Assistive Technology Initiative program may also be able to provide information and assistance with obtaining funding.
Finally, remember to keep your tax professional in the loop about any plans you have for modifying your home for accessibility. In many cases, all or part of the costs associated with implementing accessibility modifications in your home can be deducted as a medical expense on your income tax return.
“ADA Accessibility Guidelines for Buildings and Facilities.” United States Access Board, September, 2002.
“Have Stair Lift, Will Travel.” Advance Healthcare Network for Occupational Therapy Practitioners, March 25, 2014.
“Home Fit Guide.” American Association of Retired Persons, 2015.
“Ramps and Curb Ramps.” U.S. Access Board Technical Guide, July, 2015.
“Where Can I Get Help Paying for Home Repairs or Modifications to Make My Home More Accessible?”United States Department of Labor Office of Disability Employment Policy.