AUGUSTA, Maine — Ethan Kelly, who has cerebral palsy, graduated from high school in June to the cheers of his classmates and friends. Since then, the 21-year-old 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 required by the 4-foot-5, 60-pound Ethan, who uses a wheelchair and needs a feeding tube to provide supplemental nutrition.
“There’s a lot to deal with,” Ethan’s father said Wednesday as legislation to restructure the state Health and Human Services Department won support from a key committee. “We’ve been saying lately, is there an end to this?”
Under the proposed restructuring, the Office of Advocacy is to be eliminated and its functions transferred to a private agency. The budget cut for advocates, who assess needs and organize services, will result in a net loss of 2.5 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 caretaking services as of March 19 — up from 615 a year ago, according to DHHS figures.
Those eligible for services include people with what the state defines as intellectual disabilities, who have an IQ of 70 or under and cannot function in their daily lives on their own, or who have autism.
Richard Estabrook, the department’s chief advocate who will lose his job later this year, says other families on the waitlist include many parents who are growing too old to care for their grown special-needs children and many who lack the technical medical skills needed to do the job properly. He referred to one couple who have lived with 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, and 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 waitlist is expected to keep growing, said Estabrook. A core problem is that hundreds of people deserving 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 in DHHS, said restructuring of the department is not going to limit services to disabled people in any way. He also noted that the waitlist is not new and has been around 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 waitlist to update their needs in hopes of helping those in need.
“We know what these parents are going through,” Hamilton said.
Department officials said when 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 also fears that the system’s ultimate oversight agency, the Legislature, is losing track of people in the Kellys’ situation.
State law requires DHHS to annually report 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 government staff, that’s not being done, Estabrook said in a March 16 letter to the committee chairmen.