|After remodeling (above), a wheelchair ramp ascends to a home’s threshold level.
Remodeling living quarters to make them more accessible is one way to “stay ahead” of ALS.
Modifications can be simple, such as lowering light switches, replacing doorknobs with levers, elevating toilets and installing grab bars; moderate, such as building ramps and widening doorways; and large, such as adding a roll-in shower, ceiling-mounted lift or entire room.
Industry changes for the better
In recent years the construction industry has begun to devote more attention to universal design. Also known as barrier-free or inclusive design, it refers to home specifications that permit easy access and modification for people of all abilities.
The National Association of Home Builders (NAHB), motivated by the fact that most older people prefer to live at home, has developed its CAPS (Certified Aging in Place Specialist) program that accredits remodeling contractors who are proficient in universal design construction.
Finding a remodeling contractor
When looking for a remodeling contractor, ask friends and acquaintances for referrals, advises Greg Miedema, president of Dakota Builders, Inc., in Tucson, Ariz., and vice chairman for the NAHB Remodelers group. Another source of local referrals is www.angieslist.com, a free Internet site where local residents rate service providers on overall experience, price, quality, responsiveness and punctuality.
Other things to consider, says Miedema: Does the contractor belong to a trade organization (as opposed to being just a handyman)? Does he/she belong to a local builders’ group? How long has the contractor been in business? Longtime contractors have access to more resources, says Miedema, adding it’s always wise to check references with the Better Business Bureau.
The National Association of the Remodeling Industry (www.nari.org) offers a guide for hiring professional contractors that includes design tips.
Paying for the modifications
|Extensive modifications (above) made this home’s shower fully wheelchair-accessible.
NAHB estimates that 80 percent of home modifications are paid for by the home’s primary occupants from personal savings.
(If financed from personal assets, many home modifications qualify as tax-deductible medical expenses on state and federal income tax returns. See IRS instructions for Form 1040, Schedule A.)
Other funding options, depending on the person’s age and other circumstances, can include reverse mortgages, second mortgages and home equity loans. (See Resources.)
Currently, 33 states offer alternative financing programs (AFPs) that provide low-interest loans for assistive technology such as home modifications. The program offers “flexibility toward funding anything that assists with your disability needs,” reported Robert Wolf of Ambler, Pa., who received an ALS diagnosis in June 2004 and used the AFP program to finance extensive home modifications. “It’s ideal for people who are worried about their day-to-day finances and just need a longer-term picture to be able to get through it.”
Another resource: the Rural Development Home Repair Loan and Grant programs (commonly called Section 504 programs), through the U.S. Department of Agriculture. People over age 62 who live in small towns and don’t exceed specific income levels may qualify for low-cost home modification loans.
U.S. military veterans may get assistance from the Office of Veterans Affairs’ Specially Adapted Housing Grants program.
Many communities qualify for funding from HUD (U.S. Department of Housing and Urban Development) Community Block Development Grants that can be earmarked, at a community’s request, for home modifications. (Contact HUD for specific state information.)
Sometimes, small changes work just fine
Larry and Mary Hill of Hazelwood, Mo., have been able to get by with minimal modifications because Larry’s ALS progression has been relatively slow since his diagnosis in 1994. Larry, 70, uses both manual and power wheelchairs and a communication device.
“It was very scary in the beginning, because we didn’t know how long Larry would be with us. We just bought what we knew we had to have. Now it’s been almost 15 years, and we’re doing fine with just a few modifications,” Mary said.
The couple’s first investment was a front-door wheelchair ramp. Mary learned the hard way that the contractor didn’t know much about building codes. The incline is so steep that pushing Larry uphill in a manual chair is a major chore. Fortunately, he easily makes the ascent in his power chair.
The Hills have an assortment of grab bars throughout the house, which Larry uses for transferring. Besides those near the toilet, grab bars along a bedroom wall permit Larry to hold on and step sideways to the bed. Another bar on the wall above the bed lets him pull himself upright when he’s lying down.
Mary’s back-up plan, when Larry sometimes falls and she can’t lift him by herself, are the town’s fire fighters: “They’re great; I call them and they’re right there to help.”
|A garage wall door lets Glen Houston (below) travel directly from a van to his home’s interior.
Alan and Theresa Page of Chester, Ill., began making modifications to the ground floor of their trilevel home after Alan, 52, learned he has ALS in November 2007. He’s currently using noninvasive ventilation, a walker and manual wheelchair, but anticipates getting a power wheelchair soon.
The Pages have widened their kitchen and bathroom doorways to 36 inches and installed grab bars in the shower and alongside the toilet. A special modification is a shower curtain rod that bows out, unlike the usual straight rod variety. “We got the idea from a hotel we stayed at,” said Theresa, who is Alan’s full-time caregiver. “It allows me to get in alongside and help Alan in his shower chair, and he doesn’t feel so tightly enclosed.”
The couple also converted most of their flooring surface to linoleum. Theresa said they checked out other more expensive options, but found linoleum ideal — it’s quiet and Alan finds it easier to navigate in both walker and wheelchair. To date, their total remodeling outlay is about $11,000.
The Pages are considering moving Alan’s bedroom into the dining area where he’d still have ready access to his vent, could visit with friends who drop by and wouldn’t “feel so off by himself.”
Other future plans include purchasing an adapted van and installing ramps from the house to the street.
“My advice to anyone who begins remodeling their home is ‘Don’t be afraid to ask,’” Theresa said. “There are no stupid questions in this process.”
Expanding the house itself
When Nancy Byler, 66, learned in 2004 she has the familial form of ALS, she and her husband recently had moved into a large single-level home in Tucson, Ariz.
They were fortunate that several doorways in the home already were wide enough to accommodate a wheelchair, although Nancy, who still is ambulatory, currently gets by with a combination walker/rolling chair.
Their biggest challenge was an undersized bathroom adjacent to the master bedroom. They solved it by having a new 400-square-foot bathroom and roll-in closet added to the bedroom (cost: about $40,000). It features a cut-out vanity, multiple grab bars for the toilet, roll-in shower and a Jacuzzi tub. A portable accordion-type lift chair in the tub lifts Nancy so she can step out.
At the front and back doors, the Bylers had flagstone laid on existing walkways to bring them up to the same height as the threshold.
Nancy said they solicited several bids for the remodeling project and were glad they did. “The first bid was twice as much as what we eventually paid,” she said.
A little bit of everything
Glen and Linda Houston of St. Charles, Mo., specified accessible design for their new home (their “villa”) from the very beginning. Glen, 67, received his ALS diagnosis in 2003, and currently uses a ventilator and power wheelchair.
The Houstons were creative and exhaustive in their selection of accessibility options, including:
- Two ceiling-mount track lift systems, one in the bedroom, and one in the bathroom
They obtained one lift system free from a friend who no longer needed it (normally about $3,000). Another friend custom-fit the lift which works in conjunction with padded PVC-pipe arm rails.
- A two-way swinging bathroom door
Linda says if Glen falls in the bathroom with the door closed, the dual-swing action allows her to pull it toward her and enter to help him.
- Roll-in shower with grab bars and hand-held shower head
- A garage-to-home entryway
The couple built an exterior concrete ramp from the driveway to their front door, but worried it could get slippery in bad weather. So they cut a doorway from the foyer to the garage. Now when Linda drives their adapted van into the garage, the side door opens, the van’s ramp extends out to the side and Glen rolls directly into the house.
- All passageway and closet doors widened to 36 inches
Some interior doors are pocket doors that slide inside an adjoining wall, taking up less space.
- Back-up power
The Houstons installed a large back-up electric generator that can power not only Glen’s medical equipment but all other electric devices in the house as well during power outages.
“All things considered, we felt that once the ceiling lift was in, we’d dealt with the hardest part of the accessibility issues,” Linda said.
Community Block Development Grant Program
U.S. Internal Revenue Service
National Assistive Technology Technical Assistance Partnership
National Association of Home Builders
National Association of the Remodeling Industry
The Right Space — A Wheelchair Accessibility Guide for Single-Family Homes
Book of 300-plus threedimensional drawings and descriptions of home modifications created by a general contractor; $39
RESNA — Alternative Financing Technical Assistance Project
U.S. Department of Agriculture Rural Development Home Page
U.S. Department of Veterans Affairs Specially Adapted Housing Program
“InfoQuest” accessible housing resource list, Quest July-August 2007
“Keeping Your Home Safe and Accessible: Without spending a fortune,” Quest Sept.-Oct 2006
“Reverse Mortgages: Money from Home,” MDA/ALS Newsmagazine February 2006