Maine budget cuts freeze programs for people with disabilities

From The Journal-Tribune in Maine:

BIDDEFORD, Maine — Lack of money in state coffers is forcing nearly all state agencies to cut back on services. In the Maine Department of Health and Human Services, the cuts are affecting services provided to those with cognitive and other developmental disabilities.

Take 32-year-old Michael Doggett: A series of operations shortly after his birth left him with developmental disabilities and a diagnosis of mental retardation.

“He could never live by himself,” said his mother, Sue Ellen Doggett.

She and her husband Ed care for their son in their Waterboro home. However, both parents are getting older. Doggett said she fears what will happen to Michael once she and her husband are no longer able to care for him.

“Parents are afraid to die because there’s no place for their children to go,” said Cullen Ryan, executive director of the Maine Coalition for Housing and Quality Services.

In the past, someone in Michael’s position would be eligible for services through one of Maine’s waiver programs, which pays for a number of support solutions for people diagnosed with mental retardation, autism or another developmental disability. These programs have traditionally allowed disabled people to live in a community setting such as a group home.

In October 2008, the comprehensive waiver program that provided a host of services, including around the clock support, closed. The support waiver day program also closed in October 2009.

Now the only time a person can move into a waiver program is if another moves off, usually due to death, said Charlene Kinnelly, a lobbyist with Maine Association for Community Service Providers.

As a result, there is a waiting list for new people who need these services but cannot access help because of lack of funding, said Brenda Mitchell, director of operations for Community Partners in Biddeford.

According to the Office of Developmental Services in the Department of Health and Human Services, 230 people are on the waiting list for the comprehensive waiver. Half of those people are classified as adult protective status, meaning that they are in immediate need of services to protect their health and welfare.

And that list is growing every day.

The same is true with the 50+ person waiting list for the support waiver.

Most of the new clients who move onto the support waiver are those just graduating from high school. While in school, young people with developmental disabilities can receive services through their school.

For instance, Michael Ryan’s 13-year-old son, Camden, who has been diagnosed with a number of developmental disabilities, including mental retardation, receives services through Portland’s public school system.

Camden Ryan attends seventh grade and takes special education classes. He also receives 20 hours of in-home support designed to help him learn to navigate society and get ready for adulthood.

Once he graduates from high school, however, those support services will end.

A person who leaves the school system has nothing, said Kinnelly, and the whole family can suffer.

Because the support waiver is no longer accepting new people, said Cullen Ryan, it’s likely that either he or his wife, who both currently work in professional positions, will have to quit their job to care for their son.

In addition, their son – who could potentially hold down a job of his own and contribute to society – won’t have that opportunity if support services are not restored.

Stacie Smart ,who is 37 and lives in Berwick, receives services through the support waiver and lives on her own and volunteers. She said without this service she would probably just stay home with nothing to do.

According to the Maine Department of Education, the number of students who are diagnosed with either mental retardation and/or autism and who will potentially need some level of support services after they graduate is 35 this year. By 2019, the number could increase to 113.

The waiver program was started in 1983, said Kinnelly. It began after Maine started removing people from Pineland, a state institution for people with developmental disabilities, in the 1950s, and accelerated that process in the 1970s.

Clients on waivers give up their right to state institutional care and opt instead for community services. Community placement in group homes was deemed more humane, and less costly to the state, she said.

For years, Maine was considered a leader in providing services to people with intellectual disabilities, said Kinnelly, but “the safety net is starting to have some significant holes.”

Since new people can’t receive services through the waiver, those in the most urgent need are being moved into crisis shelters.

The majority of waiver services are paid for through MaineCare, for which each dollar of state funding is match by two dollars of federal funds.

But placement in crisis shelters is paid for entirely with state money.

In addition, organizations that provide housing and services for people with intellectual disabilities are in trouble, which in turn is hurting the clients for whom they acre.

For the first time in her 28 years with Community Partners, she has had to ask clients to pick up and move from their homes in order to consolidate, said Mitchell.

She added that the per person cost is going up, which puts the organization in financial jeopardy.

“We certainly understand these are very difficult times,” said Kinnelly.

However, she said, “These are people who cannot support themselves.”

“I don’t think we’re being as creative as we might be,” said Kinnelly.

She advocates for cutting some state requirements for training, licensing and documentation as one way to cut costs.

“It’s almost like a time bomb that hasn’t gone off,” said Kinnelly.