AUGUSTA — Ethan Kelly, who is 21 and has cerebral palsy, graduated from high school in June to the cheers of his classmates and friends.

Since then, he has been living at home, needing the constant care of his parents.

“My wife and I and Ethan, it’s 24-7,” said Alden Kelly, 55, whose family lives in rural Appleton, near the central Maine coast. “It’s continuous care and there’s no break from it.”

The Kellys are among the nearly 1,000 families on an ever-growing waiting list for state support services and help navigating the complex process of lining up those services, such as those needed by Ethan, who is 4 feet 5 inches tall and weighs 60 pounds, uses a wheelchair and needs a feeding tube to provide supplemental nutrition.

“There’s a lot to deal with,” his father said Wednesday, as legislation to restructure the state Department of Health and Human Services won support from a key committee. “We’ve been saying lately, is there an end to this?”

Under the proposed restructuring, the DHHS Office of Advocacy would be eliminated and its functions would be transferred to a private agency.


The budget cut for advocates, who assess needs and organize services, will cause a net loss of 2½ positions, leaving five statewide.

Amid the planned cutbacks and changes, 983 families in similar straits as the Kellys were on a waiting list for direct care services as of March 19 – up from 615 a year ago, according to DHHS figures.

People eligible for services include those with what the state defines as intellectual disabilities and have an IQ of 70 or less and cannot function in their daily lives on their own, or have autism.

Richard Estabrook, the department’s chief advocate, who will lose his job later this year, said other families on the waiting list include many parents who are getting too old to care for their grown special-needs children, and many who lack the technical medical skills to do the job properly.

He referred to a couple who have had their child at home for 47 years. So far they have coped, but now the parents are in their late 70s and the father has dementia.

In another case, a 22-year-old with a severe mental disability, who is blind, deaf and cannot speak or walk, requires parental care at all times, putting a severe financial strain on the family. But a report from Estabrook to state lawmakers says the disabled man is listed as having no unmet needs.


With the cutback in services, the waiting list is expected to keep growing, said Estabrook. A core problem is that hundreds of people who deserve services will fall between the cracks.

“That’s why the system is under so much stress,” Estabrook said.

Ricker Hamilton, acting director of Adult Cognitive and Physical Disability Services for the DHHS, said restructuring of the department would not limit services to the disabled in any way. He also noted that the waiting list has existed since 2008.

While acknowledging tight funding, Hamilton said the department has been looking for savings and has set as a priority contacting every person on the waiting list to update their needs, in hopes of helping those in need.

“We know what these parents are going through,” Hamilton said.

DHHS officials said when the restructuring was announced in mid-March that the goal was to eliminate duplication, streamline services, reduce administrative costs and improve the transition of clients from children’s to adult services.


There are fears that the system’s ultimate oversight agency, the Legislature, is losing track of people in the Kellys’ situation.

State law requires the DHHS to report annually to the Legislature’s Health and Human Services Committee, assessing whether the needs of thousands of people like Ethan are being met and whether, as state policy requires, they are being integrated into their communities.

But because of the loss of staffing, that’s not being done, Estabrook said March 16 in a letter to the committee chairs.


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