At a ribbon cutting ceremony last summer, the founders of Main Street celebrated the opening of its first affordable and inclusive apartment building in Rockville, Maryland. In addition to a ground floor community center for residents and neighbors, a portion of the building's units are set aside for adults with intellectual or developmental disabilities and their caregivers. Aging parents of adults with disabilities are looking for group homes and creative housing solutions such as Main Street's so they can trust that their children will have a supportive community when they are no longer around. Photo by Michael Kress/MBK Photo

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Carol A., a mother of an adult child with autism, worries about her son’s future.

“After my husband’s cancer passing, I am often in private anguish about what will happen to my sweet son if anything happens to me,” she said.

Parents of adult children with intellectual or developmental disabilities (I/DD) must plan ahead to secure a reliable, caring home for their children, who are living longer than ever before.

“This is really the first generation of people with I/DD who are living such long lives, which is attributed to better healthcare, better nutrition, and being included in their communities instead of being sent to large institutions,” said Deborah Mark, communications director for The Arc Montgomery County. The Arc is a nonprofit that operates 35 group homes in Maryland for people with I/DD.

“We have parents who are in their 90s, and we are caring for their adult children in their 70s. Parents want to know that their loved one will have a place to live and the support he or she needs to be successful,” Mark said.

Thousands of group homes for those with intellectual or developmental disabilities exist in Virginia, Maryland and D.C. But you may not have noticed them because they’re “regular houses in regular neighborhoods,” said Betsy Schatz, former executive director of Langley Residential Support Services, a Fairfax County nonprofit that operates six such houses. (Schatz spoke with the Beacon before she died in March 2021.)

“Hopefully, you’d never know that our house is a group home.”

Inclusive housing benefits all

In addition to group homes, there’s a surging demand for what’s known as inclusive housing — buildings that reserve spaces for tenants with developmental disabilities.

For instance, when the nonprofit Main Street opened its inclusive community building in Rockville, Maryland in August, more than 10,000 people were interested in its 70 apartments. One-quarter of the building’s 70 units are set aside for adults with disabilities, while the remaining apartments are affordable housing for all.

How do you reserve one of those apartments or a room in a group home for your aging child with disabilities?

Plan ahead, Mark suggests. Residents must apply to their state or city Developmental Disability Association (DDA) for funding to pay for housing. In Maryland, the DDA’s waitlist is formidable; currently the agency is only granting requests on an emergency basis.

Adapting as residents age

The I/DD population tends to age at a different rate from the general population.

“Typically, people with developmental disabilities tend to have earlier onset of diseases associated with aging, like dementia, diabetes and arthritis,” Mark said.

With an aging population, The Arc and other similar providers must adapt their services. The Arc Montgomery has remodeled bathrooms and made other accommodations for their residents in its 35 group homes.

In the same way, when Langley Residential Support Services noticed that some older residents were losing mobility, workers added chair lifts to the stairs, grab bars to the bathrooms, outdoor ramps and other accommodations.

“We’ve always said at Langley that we are like a family. As a family, you adjust according to the circumstances,” Schatz said.

‘Who will take care of them?’

Langley Residential took shape in early 1980s, when a church in McLean, Virginia, hosted a dance for adults with developmental disabilities, and members of two other churches joined to chaperone.

“After meeting these men and women who came to the dance, they began thinking about what’s going to happen to these people when their parents pass away. Who’s going to take care of them?” Schatz recalled. So, the three churches formed a nonprofit and still provide support to the organization.

Langley Residential’s 33 staffers are on duty in group homes in the early mornings and overnight. They help the four or six residents of each house report to their jobs at grocery stores, thrift stores or salons.

“They can live and work in a community just like anyone else. They want to participate,” Schatz said. “That’s what Langley is all about: making sure that the people we serve have an amazing life. That’s what we strive to do.”

This year, Langley Residential is raising money for upgrades to its six houses, as well as for iPads and tablets so that every resident can keep in touch with family during the pandemic.

In a way, residents and staff have become family, too. “I’ve known these people for 30-some years now; they’re part of my life story. I want the best for them,” said Schatz, who worked at Langley since 1988.

“They’ve fulfilled a need in me as much as I’ve been able to help them,” she said. “They keep me in stitches.”

For more information or to make a donation, visit LangleyResidential.org or thearcmontgomerycounty.org.