A place to call home
Finding affordable accessible housing can be a challenge. Cohousing offers new options for people with MS.
by Maureen Salamon
Ann Zabaldo was already living in an informal cohousing community—an arrangement where people have their own homes but share some common spaces, chores and costs—when she was diagnosed with multiple sclerosis at age 38 in 1988. She loved the sociability of cohousing. “I’m sort of an off-the-wall extrovert,” she quips. And by the time Zabaldo needed a wheelchair in 2005, she appreciated the supportive aspects of cohousing even more.
Like most cohousing communities, Zabaldo’s Washington, D.C., multigenerational complex was designed with input from its future residents, so it is almost completely accessible. Zabaldo, who is past president of The Cohousing Association of the United States, and the founder of Mid-Atlantic Cohousing, also renovated her own two-bedroom condo twice to meet her changing needs.
“As I’ve become more disabled, my neighbors have really rallied around me to help me stay on my own,” says Zabaldo, now 63. “My neighbors get groceries for me, pick up prescriptions and take me to doctor’s appointments. I also do a lot of work for the community. I can’t pull weeds. I can’t climb on a ladder to fix the window—but there’s always an opportunity to contribute.”
Many options, little funding
Many people with MS don’t consider their changing needs until they’re on the cusp of no longer being able to navigate their current home or even live independently, says Leigha Lucas-Brock, resource manager at the National MS Society’s Information Resource Center. The Society typically fields more than 200 calls each month from people with MS seeking housing advice or referrals that range from “supportive care” options, such as assisted living or nursing care, to government-subsidized accessible and affordable housing.
But they’re often unaware that the costs of assisted living are not covered by private insurance, Lucas-Brock explains, or that long waiting lists and decreased funding have significantly limited subsidies for accessible housing. Since 2010, public housing agencies have lost $3.4 billion in federal funding, and many agencies have stopped reissuing housing vouchers—which help pay for market-rate rents—to those on waiting lists.
An attractive option
These issues have made alternatives such as cohousing communities, which began in Denmark in the 1960s, more attractive to people with disabilities. Cohousing proponents are quick to dispel the fallacy that the arrangement resembles a “hippie commune.” Instead, residents typically purchase their own units—condos, town homes or single-family homes—centered around a “community house” or courtyard where they share some meals and gatherings, and chip in on maintenance costs and chores for common areas. Many communities also offer shared laundry and fitness facilities, and may organize carpools and group grocery purchases.
“I think people with disabilities should carefully consider it as one possible option,” says Larry Oaks, a housing consultant for the Society. “It’s a wonderful way for folks to help each other and draw support from their neighbors.” About 120 such communities are distributed throughout the country, with another 100 or so under development.
A similar option for people who are less independent is congregate housing. This arrangement allows several people with disabilities to share a home. Each has his or her own bedroom, but kitchens, dining rooms and bathrooms may be shared. Typically, a “service coordinator” works on site to make sure each individual’s needs are met. People may also consider making modifications to their existing homes.
Aspects to consider
When assessing whether cohousing or another housing alternative will meet their current or future needs, people with MS should consider several factors:
Accessibility: More than 1 in 5 adults with MS are limited in their home choice because it’s not accessible, according to a 2013 study completed by Malachy Bishop, PhD, CRC, at the University of Kentucky, in cooperation with the Society. The study recommended that anyone with MS—but especially those over 50—consider accessibility in any long-term housing decision. Look for features such as entrance ramps, roll-through doorways and showers, lower cabinets and countertops, and bathroom grab bars.
Finances: Apart from being sold at market rates, cohousing doesn’t present any unusual financial risks and can lighten expenses because of shared costs, Oaks says. “Take a careful look at the financial condition of the association that owns the cohousing—you’ll want to see that they have adequate reserves for capital needs,” he advises.
Transportation and amenities: Look for cohousing communities that are near public transportation to your frequent destinations such as medical offices, shopping centers and places of worship, Oaks says.
Social needs: You’ll want to make sure that the mix of people and the level of sociability feel comfortable in any housing option you’re considering. Ask if you can attend a community meal; you’re likely to get a good sense of the social “scene” that way.
Dana Snyder-Grant, 57, feels her two-bedroom duplex at New View Cohousing in Acton, Mass., hits the mark on all of these crucial criteria. “It’s just a good way to live,” says Snyder-Grant, a psychotherapist and author who was diagnosed with MS in 1981 and has lived at New View with her husband since 1996. “A lot of things here that are wonderful for someone with MS are wonderful for anyone. You can have privacy if you want, but you can also have a community around you to share the ups and downs of life.”