A Special Place A Program That Gives Homes To Mentally Disabled Residents Is Facing An Uncertain Future

More than 50 people had gathered to celebrate Susan Bilodeau’s 45th birthday. The room buzzed with excitement. Cupcakes and ice cream cups decorated the long cafeteria table.

Three leis of Bilodeau’s favorite colors — white, red and pink — adorned her neck, along with her every-day beaded necklaces. She wore a special ring for every finger, and numerous bracelets clinked as she moved.

“Susan’s had a big smile on her face all day today,” said someone in the corner.

After a birthday song, Bilodeau blew out the single candle and received hugs from several friends at TESH, a life skills training facility.

Bilodeau and her roommate, 37-year-old Carol Edstrom, are developmentally disabled. For the past 61/2 years, they’ve lived with a caretaker, Pat Conces, and have taken classes at TESH.

Asked if she liked her cupcake, Bilodeau nodded and smiled. “Oh — good food,” she said with excited eyes and a loud giggle.

“She’s a joy,” said Conces. And although the state program has helped the women create a sense of independence, Conces said neither Edstrom nor Bilodeau could ever live on their own.

Both the living arrangement and the classes are funded by Medicaid. That money is in jeopardy as the state Legislature ponders budget cuts. Conces, who considers the two women part of her family, is worried.

“People with developmental disorders are taking the cut and they shouldn’t,” she said. “If they’d only look at the costs. The cost of this type of program as opposed to an institution is incredible. And if they don’t reconsider, they’ll have to put people back in institutions.”

Their current living arrangement is known as a “residential habilitation” home. It’s a housing option for disabled people who can’t live in managed homes or with their own family.

There are about 50 such homes operating in North Idaho, housing 80 people, said Keith Knight, a state Health and Welfare supervisor. There are up to 500 of the homes statewide. Funding for the homes began in 1995. They were seen as cheaper, more effective alternatives to institutions.

“The difference is that you have one-on-one contact with a provider,” Knight said. “The provider can concentrate on care. They’re in the community.”

The housing program includes training sessions for caregivers, specialized family home meetings and two substitutes for when Conces goes on vacation.

To keep her licence, Conces must have her rented home inspected every year. Every month, two private agencies come to check up on each woman.

Both Bilodeau and Edstrom have goals each year, said Conces. They vary from week to month, including helping to prepare dinner each night and keeping their bedrooms clean.

“The object is to make them as independent as they can be,” Conces said.

Conces began working in special education more than 30 years ago. She administered a school workshop for developmentally disabled people, co-founded a Montessori school and made home visits to the elderly.

When she heard about the residential habilitation program, Conces agreed to try it for one year. Seven years later, Conces admits that Bilodeau and Edstrom have become an extended part of her own family of eight children, 19 grandchildren and four great-grandchildren.

She knows both woman’s personalities, and can predict how they will react to different things. A big chore is keeping Bilodeau and Edstrom from fighting like sisters.

Birthdays, like Bilodeau’s, are an important time to celebrate as a family. With so many family members, at least one birthday takes place at Conces’ home each month.

Both women have changed after attending TESH programs and living with Conces. Conces said Bilodeau grew up knowing she was “special” because her disabilities were given extra attention — enough to make her believe she was the center of attention all the time.

“We need to teach special children to be socially acceptable, because one day, you won’t be there to make it for them.” Conces said. “Susan’s learning to make choices. Most times she had the choices made for her. And she loves to do that for herself.”

But Medicaid budget cuts might cause changes at Conces’ home. The future of TESH’s Pathways to Independence program also is in question. Edstrom and Bilodeau both take classes that focus on practical skills, such as socializing and exercise. Both women spend several hours a day in classes.

Conces doesn’t want to see these programs taken away from the developmentally disabled.

“This is the absolute best solution for not having institutional and group homes,” Conces said. “For them to assume responsibility — that’s a great thing. It saves the state much money.”

Regardless of what happens in the Legislature, Conces hopes to continue providing a home for Bilodeau and Edstrom.

“I’ll do this ‘til the day I die,” Conces said. “Most ladies get Social Security or they work. This is my retirement.”