Custom built | A Maine couple bypasses the state to establish condos for disabled adults
Maine is struggling to provide social services to those who need them most. The impact of accumulated budget deficits and demographic shifts has led to growing waiting lists and an increased urgency for change. Central to this predicament is a commitment Maine made 30 years ago to replace large institutions with community-based services such as group homes and special education.
The good news is that efforts by Mary Chris and Paul Bulger, Cape Elizabeth parents of a 21-year-old daughter with autism, and Brian Scanlon, the Region 1 Team Leader for the Department of Health and Human Services, show that change is possible; the system can be transformed.
Like many parents of disabled young adults, the Bulgers began considering options for their daughter after her graduation from Cape Elizabeth High School. Because Anna is high functioning, they knew she would be at the bottom of the state’s waiting list for housing.
State-funded housing has been under serious threat for the past seven years. There are 140 severely disabled adults currently on the priority one waiting list alone, according to Cullen Ryan of Community Housing of Maine. “There is a cliff that appears at the end of the educational cycle,” he says. “The system dead-ends and there really isn’t a next step.”
Mary Chris agrees. “The system invests so much in helping children with disabilities become independent, but when they graduate, they have limited options. I didn’t want Anna to sit on the sofa for the rest of her life. I kept asking myself: How do I do something that is good for her?”
Then Mary Chris discovered Specialized Housing, a 27-year-old nonprofit based in Brookline, Mass., that helps families join together, set up staffing and build or renovate houses for their children. “When my daughter was 10, she told me when she grew up she wanted to get an apartment, where she could live with a friend and go to the movies and out to dinner,” she recalls.
Becoming a reality
Mary Chris embraced the model, which was untried in Maine. She hired Specialized Housing in a consulting role to assist with purchasing, zoning changes, structuring and managing the entity. She began searching for a building that was close to bus routes, jobs, stores and restaurants, and large enough to house nine residents and two staff people. She found the former American Legion building at 20 E St. in South Portland, a 6,000-square-foot structure that fit their needs but needed to be gutted and renovated completely.
While the Bulgers decided to proceed without the state, Mary Chris stayed in contact with DHHS, and Scanlon followed their progress. “Since this is the first project of its type in Maine, people had to see it come together,” says Mary Chris. “It’s a lab of sorts. The state needs to help people, and I also think if you have the means, you need to help your own.” The purchase and renovation of the building cost $1.2 million, which was jumpstarted with a personal investment by Mary Chris and her husband, a real estate attorney.
The building, which opened in May, is structured as a condominium association. Eight people have moved in, with a ninth on the way. Like Anna, the other tenants, ranging from 19 to 42 years old, need some supervision but are fairly independent. One resident drives. Others go to school or have part- or full-time jobs.
Though the building offers separate bedrooms and access to shared spaces, it is different from a group home. Residents buy into the condo association for $120,000 to $150,000. In addition, each family contributes $1,700 a month for expenses. The building includes two apartments for live-in staff. A full-time house manager prepares menus and meals, arranges doctor’s appointments and other logistics. And residents have access to a clinical director 10 hours a week.
While most people can’t afford to bypass the state and create their own house, Scanlon sees in 20 E St. the seeds of a model that the state might adopt and replicate, and DHHS has invested $80,000 over two years to help fund the house’s operations and learn from its progress. Scanlon is particularly interested in how the Bulgers have structured staffing, which accounts for the lion’s share of the $280 million the state dedicates to residential services for adults with disabilities.“I am envisioning, like 20 E St., a building that has an apartment where a family lives,” he explains. “This could allow the state to create an alternate model and provide services to more people.”
This tacit partnership among parents, the state and a new model is a great example of the power of practical motivation to change outmoded systems.
Elizabeth Banwell is director of program development and strategic initiatives for the Maine Association of Nonprofits in Portland. She can be reached at editorial@mainebiz.biz. Read more of Elizabeth’s columns here.
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