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Caring for a Disabled Child - And Worrying About the Future

Tom Porter
/
MPBN

According to a study earlier this year by the AARP, Maine has about 200,000 people who are described as "unpaid caregivers," providing nearly $2.5 billion of free healthcare to the state every year. Most of them are looking after elderly family members, typically their aging parents. But in some cases, the situation is reversed and it's the parent who's caring for a sick or disabled son or daughter. In the final installment of a three-part series on the challenges facing caregivers, Tom Porter examines the plight of Maine families who are worried about the future.

 

Anne Palmer recently turned 81. She lives in Waterville with her 44-year-old son Todd - the oldest of her two children. "Todd is Todd - he's unique," she says. "What would you like to know about him?"

Anne - a retired nurse - says Todd was in an accident 20 years ago that would change his life. "He was quite young, actually, and full of energy, when he took a ride on the back of a motorcycle and an old lady cut in front of them, and that was how the accident happened."

The accident left Todd cognitively impaired and with neurological damage, which caused what his mother describes as a "left-side deficit" - a weakened left arm and leg, which makes it harder for him to get around.

"I hold my breath when he goes up and down stairs because the stairs in our house - our house was built in the 1870s and the stairs are very short, and his feet are very long, and one doesn't like to turn sideways too well," she says. "But I've ordered some railings to be up on two sides so we'll have some up on both sides - for me as well as for him."

Todd - who lives in a converted apartment in his mother's house - has good days and bad days, says Anne. On the day I arrived for this interview, Todd was due to come along, but he changed his mind. As his sole caregiver, Anne says the demands on her vary greatly. On good days, she says, Todd is fairly independent - he has an active social life and has developed a passion for bowling - good therapy, says his mom, but he's always going to need some level of care to get through the day.

"He would get by, but with one hand it's difficult to cook," she says. "I've seen him try. With one hand he took the pot off the burner, and the left hand is dragging on the burner and he doesn't feel it."

The biggest concern for Anne is what's going to happen to Todd in the long-term, when she's no longer around to care for him. "I'm drawing a blank," she says. "I mean, hopefully, there'll be somebody to hire and come stay in the house with him, unless he and his sister decide. But it depends what she's doing - she works 24-7."

Anne and Todd Palmer are not the only family in this situation. And Lori Parham, director of the AARP Maine, says there are no clear answers for them.

"This is an issue that has been understudied, but we're seeing more and more for examples with the growing incidences of autism, and the number of parents who are starting to wonder who will care for their children when they can no longer care for their kids, or when they pass on," Parham says.

Community-based group homes could be one option for people like Todd, she says, but they can be expensive. "We're going to have some challenges over how these folks are cared for."

"What we do know about Maine is that we have a direct care workforce that needs our attention," says Democratic House Speaker Mark Eves. Eves recently unveiled a package of measures known as the "Keep Me Home" initiative. They include a proposed $65 million bond issue for the construction of affordable housing for seniors.

But Eves acknowledges that younger adults with disabilities, like Todd Palmer, also have care needs - needs that could be met in many cases without requiring them to leave home. And he says that's why Maine needs to invest more in its direct care workforce, who provide valuable in-home care and who have not had a pay raise in more than a decade.

"We not only need to take care of our aging population and individuals with disabilities, but also those that take care of them," he says, "so the rate at which direct care workers are paid certainly needs to be increased."

The Keep Me Home initiative aims to boost Medicaid reimbursement rates for direct care workers. Eves says in the next session there are plans to introduce legislation that would increase state Medicaid funding in order to trigger more federal dollars. But he says the precise details of the proposal - including a dollar amount - are still being worked out by lawmakers and advocates.