SOUTH PORTLAND — Two months ago, Anna Bulger could go to the bowling alley, rent a pair of shoes, play a few strings, socialize with friends and pay the cashier without too much of a problem.
But since Anna turned 21 on June 30 and became a legal adult, her mother said the social skills of her autistic daughter have declined and it is more difficult to get her to do everyday tasks, let alone improve her life skills so she can be increasingly independent.
Anna’s birthday meant she could no longer participate in many supported, community activities designed for adolescents. What used to be 16 hours a week spent with professionals reinforcing life skills like grocery shopping, going to the bank, crossing the street and the like has dwindled to four hours. While she still attends cooking classes and practices very basic life skills, she is no longer able to go on group bowling trips with her friends.
Her mother, Mary Chris Bulger, has had to sit by and watch her daughter fall deeper into isolation, losing the skills that help her be more independent.
“It really is one of those things that if you don’t use it, you lose it,” Bulger said. “I have seen her not only at her plateau, but declining from the person she could be. That was a big experience for me to see she had lost so much.”
It’s only one of the reasons the Bulger family has teamed up with three other Maine families to build a congregate housing project at 20 E St. for developmentally disabled adults. Residents can buy private rooms for $150,000 so they can live within a stable community with professional support staff.
Bulger said that there are still five openings in the house and she needs more families to sign on. The building is being renovated and the $1.2 million cost was planned to be shared by families who would buy their children condos in the building, which will also house two live-in development professionals and a house manager.
On Thursday, Nov. 5, Bulger will meet with at least 10 Maine families interested in the project, which she said is now being promoted by the state Department of Health and Human Services, which has promised to give the group $10,000 a month when the house opens through next June 30 to help pay for support staff. The informational meeting starts at 6:30 p.m. in the South Portland Public Library.
The four families already committed to project have each fronted $30,000 toward construction costs, but are getting nervous they might lose their investment, Bulger said. The group is seeking a loan from Bangor Savings Bank and a city advisory committee has recommended giving them a $50,000 loan at 1 percent interest from its Community Development Block Grant program. Assistant City Manager Erik Carson said the City Council will vote on that loan on Nov. 16.
“These four families have taken a huge risk,” Bulger said.
Although social service agencies are beginning to promote the project and more families are expressing interest, ultimately most are not committing because many lost money in the stock market, which has prompted the group to consider stopping construction on the project, which is slated to open next May.
“If we stop construction, I think we are going to be dead in the water,” Bulger said.
The housing project would be the first of its kind in the state and Bulger said it is sorely needed. While there are strong support programs for developmentally disabled children in the schools, meaningful support systems for adults are lacking, leaving those responsibilities to the families.
Bulger said she doesn’t mind being the caretaker for her daughter, but worries what will happen when she grows older and is no longer able. Anna Bulger’s brother and sister will be able to help, but that instability isn’t fair to her daughter, she said.
Bulger is sensitive to criticism that the housing project is “elitist,” because the cost means it is not available to everyone. But she said that when families like hers accept more responsibility for the future of their children, there is more state funding available to others who need financial help.
Bulger hopes to allay any concerns interested families may have at next Thursday’s meeting.
“I don’t want to say we’re desperate, but sometimes it feels that way,” she said.
More information about the project is available online at 20estreet.com.
Randy Billings can be reached at 781-3661 ext. 100 or firstname.lastname@example.org