After Todd was diagnosed with ALS in 2010, we soon determined that we would need to sell our 1925 Craftsman bungalow. A remodel or addition to make it accessible was not feasible, and since Todd’s form of ALS seemed to be progressing slowly, we prepared for years of disability by building an accessible home.
Here are the key design elements that made our home accessible:
- ground-level access to eliminate the need for long ramps
- attached garage with room for an accessible vehicle
- ADA-compliant ramp from garage to the house (building code at the time required the garage floor to be at least 4 inches below the living space, and the ADA requires at least 12 inches of run for every 1 inch of rise)
- barrier-free exterior doors with zero level thresholds
- 4-foot wide hallway with a cul-de-sac at the end to accommodate turning around and the easier access to each of the bedrooms
- 36-inch interior doors for unobstructed passage of a wheelchair
- a great room so that a person with limited mobility can remain connected to family activities
- plenty of room in the main bedroom and en suite bathroom to allow movement of a wheelchair and room for transferring into bed, shower chair, and toilet
- a space for the person with a disability to park and use a computer, read, or watch television
- house constructed over a concrete slab with in-floor radiant heat to keep immobile toes warm
- levered door handles, which are beneficial for earlier stages of the disease
- lower light switches and higher outlets for earlier stages of the disease when arms or legs are weak
- kitchen counter with overhang or pull under area
- kitchen faucet with lever handle
- plenty of outlets to plug in equipment in places where the person with ALS will be parked, such as in the bedroom
- blocking where needed to install a ceiling track in the bedroom for an overhead lift, which is easier than using a floor lift
- hard flooring throughout the house to prevent tripping while legs are weak, easier movement of a wheelchair, and the use of floor lifts
- flat transition strips between flooring types to eliminate tripping and because even small bumps jostle a weak neck if a head array is used to control a wheelchair
- a separate entrance and space for caregivers, such as physical therapist, shower aides, and nighttime help, to allow private family space for a spouse and/or children
- 20kW generator with automatic transfer switch
The elements of our accessible bathroom include:
- open area with at least a 5-foot diameter to allow the wheelchair to turn around and space to transfer to the toilet or shower chair; more space may be needed if transferring with a floor lift
- blocking and ceiling tracks to allow transfer to the toilet and shower chair, eliminating the need for a floor lift
- chair-height toilet with an elongated bowl, which is particularly helpful for men toileting in a U-transfer sling
- space on each side of the toilet so there’s room for caregivers or to maneuver a floor lift
- a bidet sprayer for easier cleanup
- zero barrier roll in shower that is at least 4 feet wide and 6 feet deep
- a trench drain at the entrance to the shower to eliminate spillover and yet allow zero barrier transition into the shower with a shower chair
- blocking wherever, or even 5/8 inch plywood backing the walls, so grab bars could be mounted wherever needed, which is beneficial in the early stages of the disease
- zoned or supplemental heat to the bathroom for shower days
- hand-held shower head
- pull-under bathroom sink
- lever-handled fixture, which is beneficial for earlier stages of the disease
- tilt-down mirror so that somebody sitting in a wheelchair can see themselves
Building is expensive, even more so than in 2012, and we needed to fundraise and take an early withdrawal from Todd’s 401(k) to minimize the amount we had to mortgage. But accessible designs are not necessarily more expensive, perhaps except for building on slab with in-floor radiant heat.
Building on slab with a boiler system that was about 30% expensive than if we had a basement with floor trusses and a forced air heating system, and it necessitated us installing mini split air conditioners in Todd’s office and bedroom. Central air is a more affordable option when combined with a forced air system. Also, it is more expensive to build a larger bathroom with a roll in shower. Other than those features, accessible design elements, such as 36-inch wide doorways and hard flooring, are not significantly more expensive. It’s more about planning useful spaces. To reduce costs, we compromised in another areas of the house, such as having smaller bedrooms for the children.
Unfortunately, some people simply do not have the resources to build or even remodel. And if the disease progresses quickly, and there may not be time to remodel a home or build new. In these difficult situations, people often make do with a hospital bed and commode in the living room. It’s a brutal disease.
