Before you modify your living space to accommodate a neurologic condition, consult these expert tips to make sure your alterations are smart and safe.
By Gina Shaw
When retired anesthesiologist Patti Klein, MD, now 57, fell down her basement steps in the fall of 2013, she and her husband, attorney Martin Shenkman, realized it was time to change their living situation. Klein had been diagnosed with multiple sclerosis (MS) in 2006, and she and her husband saw the fall as a sign that their three-story home was too much of a burden and posed too many safety risks.
Like many other families facing a progressive neurologic illness, they knew that Klein’s condition was unpredictable and could worsen over time. So they had to set up their new home in a way that would be accessible for her now—and adaptable in the future. With that in mind, they settled on a one-floor apartment with a doorman in Fort Lee, NJ, that was about half the size of their previous home.
Before moving in, they renovated the apartment to meet their needs—and discovered a few important guiding principles along the way.
IF YOU’RE MOVING
Think Ahead. Klein is still quite mobile and independent, and may be for years to come. But the course of MS, like many potentially disabling neurologic conditions, is unpredictable. You don’t want to be frantically trying to find a new home or making changes to an existing one after a significant decline. “It’s important to think about both modifying your home to meet your needs now and anticipating your needs farther down the road,” says Jodi Wolff, MSSW, director of clinical services for the Muscular Dystrophy Association.
Downsize. One-floor living is easier not only for people who use a wheelchair, but also for anyone whose condition causes fatigue.
Seek Services. Look at apartment buildings or gated communities with amenities such as security staff and a doorman or concierge who can be called upon to help out, especially if the person with a neurologic illness will be living alone all or part of the time.
IF YOU’RE STAYING PUT
Banish the Bumps. Take up the “doorway saddles”—those bumps in the floor that mark the transition from one room to another. They can be a tripping hazard, and are difficult for wheelchairs to maneuver.
Embrace Technology. Take advantage of “smart home” tools that can wirelessly control temperature, lighting, and the TV and telephone, suggests Debra Frankel, a licensed occupational therapist and vice president for programs, services and clinical care with the National Multiple Sclerosis Society. Control units can be hand-held or mounted in specific places like a wheelchair, a bed, or a desk; larger screens and even voice controls are also available. Shenkman and Klein say they worked with a home automation provider committed to adapting technology to serve people with disabilities.
Think Small. Sometimes small changes are all you need, says Shenkman. For instance, he replaced his kitchen’s old faucet, which sat at the back of the sink, with one that sits on the side, which is easier for his wife to reach. He also put the microwave on a low shelf near the breakfast table, making it easier for Klein to microwave meals while sitting down. “There are all kinds of simple fixes, like a mixing bowl with a rubberized bottom to hold the bowl in place on the countertop, so that a person with motor control issues can stir ingredients,” says Frankel.
LEARN FROM THE PROS
You can save yourself a lot of headaches by talking to people who have already adapted their homes, says Jodi Wolff, MSSW, director of clinical services for the Muscular Dystrophy Association. “One thing the Muscular Dystrophy Association likes to do is connect families who’ve been through this process with families who haven’t,” she says. (The National MS Society and many other disease-specific groups also make similar connections.) “No one can give better tips and advice than someone who has modified his or her own home and has used the things you’re considering.”
An occupational therapist (OT) and/or a physical therapist (PT) can also ensure that your modifications are safe and effective. Contact your neurologist’s office, a local Agency on Aging, or a home health agency for a referral to an OT or a PT who can come to your house and do a safety and accessibility evaluation.
“There’s no one cookie-cutter approach to modifying a home when you have a progressive neurologic illness,” says Wolff. “It’s really about increasing functionality while ensuring a safe environment.”
These principles are not just useful for accommodating people with disabilities. In fact, accessible design may become standard for every new home. “When communities started putting in curb cuts for people who used wheelchairs, they learned that they weren’t just good for people with disabilities—they are used by people with strollers, people pushing grocery carts, all sorts of people,” says Debra Frankel, a licensed occupational therapist and vice president for programs, services and clinical care with the National Multiple Sclerosis Society. “Many architects are now thinking about designing environments that are accessible and pleasing for everyone: the elderly and the young, the physically disabled, the cognitively disabled, and the able-bodied.”
HELP IS HERE
These resources can help guide you through your home modifications.
AbleData (http://AbleData.com). This national database of accessibility equipment and resources, run by the National Institute on Disability Rehabilitation and Research, can help you find all sorts of home modification tools, from comprehensive smart home technology to things like push-button faucets, bath lifts and shower stools, and “reachers” that can be used to pick up items without bending or stretching.
National Association of Agencies on Aging (http://n4a.org). Don’t let the name fool you—you don’t have to be over a certain age to get help from these agencies, which are there to provide older adults and people with disabilities with guidance and connections to services that can help you stay in your home. These agencies may also be able to help you get funding for home modifications.
Condition-Specific Organizations. The National Multiple Sclerosis Society (NMSS; http://nationalmssociety.org), the Muscular Dystrophy Association (http://mda.org), and other national associations focused on the specific neurologic condition you’re dealing with can put you in touch with people who have already adapted their homes. They can also provide grants and other types of financial assistance. For example, in 2013, local NMSS chapters provided more than $1 million to fund home modifications, mobility devices and portable ramps, assistive technology, and other items and services to improve the safety and independence of people with neurologic conditions.
Other Outlets. The Centers for Independent Living (find one in your area at http://bit.ly/CIL-NET), state Vocational Rehabilitation Agencies (search your state and “vocational rehabilitation” online), and the Centers for Medicare and Medicaid Services (http://cms.gov), under their home and community-based waiver program, can help you find long-term care services in home and community settings.
Qualified Tax Professionals. For information on tax credits for home modifications from the IRS, check out http://bit.ly/IRS-credits or talk to an accountant, who can detail the ins and outs. At the state level, only Georgia and Virginia have legislation that allows tax credits and deductions for home modifications for medical reasons, according to the National MS Society. Virginia offers a $5,000 tax credit toward home modifications or building a new accessible home, while Georgia provides $500 for a new home and $125 for modifying an existing home. Some other states have legislation that is currently being drafted or considered.
© 2015 American Academy of Neurology