Maine kids face long wait for specialized care after clinic closes in Augusta
May 27—Sara Wing said her 11-year-old daughter needs to see a specialist who can make a diagnosis because she suspects her daughter has a developmental disability. Such a diagnosis would unlock Medicaid services and likely result in her daughter getting extra help at school.
But Wing said when the Edmund Ervin Pediatric Center at MaineGeneral Health in Augusta closed on May 16 — a move that blindsided her — it left her with no access to someone who can make that diagnosis. Primary care doctors often don't have the necessary specialized expertise and rely instead on places like the Ervin Center.
"It's devastating. I don't know what we are going to do," said Wing, who lives in Waterville. Everywhere she turns to try to seek a diagnosis for 11-year-old Kenzie, Wing finds yearslong waiting lists. Wing said Kenzie has anxiety and social issues and needs extra help.
Wing said she believes her children — Kenzie and 8-year-old Amy — missed out on learning crucial social skills during the pandemic, with school shut down or on a curtailed schedule.
"There's a whole group of kids behind on their social skills, who have mental health issues, and now one of the only places where you can get a diagnosis closed," Wing said
MaineGeneral announced on May 5 that it was closing the Ervin Center because of low reimbursement rates from MaineCare, the state's name for Medicaid. Also, insurance denials and other increased costs made some of the center's programs financially unsustainable, hospital officials said.
While most of the Ervin Center's services were folded into other parts of MaineGeneral Health, certain psychological services were closed, including diagnostics and a Pediatric Rapid Evaluation Program serving foster children.
Hospital officials said they were losing $1 million per year on the programs.
Nancy Cronin, executive director of the Maine Developmental Disabilities Council, is leading an effort to allocate $2.5 million in Medicaid funding over the next two years to stand up a program or persuade MaineGeneral to agree to a fully-funded bridge program. Cronin said in the long term, she envisions a mobile unit that would travel all over the state to get children properly diagnosed.
The solutions are in the early discussion phase, and could include legislation or a reallocation of current resources by the Maine Department of Health and Human Services.
DHHS provided a written statement saying it is exploring options.
"The department is deeply committed to ensuring that children with developmental disabilities have access to the care and services they need," it said. " While we cannot speak to specific funding proposals at this time, our focus remains on supporting families and maintaining access to critical services. We are actively reviewing how best to address gaps in services within existing resources and are exploring potential options to support children and families affected by this transition."
Cronin said the loss of the Ervin Center is creating a gap of about 650 such diagnoses per year, and will result in a proliferation of yearslong waitlists. Cronin said there's no precise accounting of the demand, but thousands of children need to be diagnosed every year, and currently, waitlists are expanding.
"Without a diagnosis, these kids can't qualify for Medicaid services," Cronin said. Many students who would qualify for special education or other school services will not be able to gain eligibility for those programs.
And Cronin said an official diagnosis is needed for mental health and developmental services that extend past the school day.
Gay Ann McDonald, executive director of the Maine Administrators of Services for Children with Disabilities, said that evaluations used for a school-based Individualized Education Program are not medical diagnoses.
McDonald said in a written statement that "educational evaluations ordered by the IEP team are not intended to serve as a diagnostic medical tool."
Medical evaluations outside of the school setting "are funded through separate mechanisms and often assess much broader areas of need, such as in-home support, community-based therapy or medical services and are beyond the educational needs of a child."
Carrie Woodcock, executive director of the Maine Parent Federation advocacy group, said that with the added bottlenecks created by the Ervin Center closing, some services will be "completely inaccessible."
"This is going to leave families with no place to go," Woodcock said.
Cronin has built a coalition of 15 nonprofits advocating to reopen some services.
Joy McKenna, spokeswoman for MaineGeneral, said that hospital officials appreciate efforts to revive the program.
"However, we are wary of a temporary fix that will not solve the program's critical structural issues," McKenna said. "These services need adequate, sustainable funding to meet the needs of children and families."
Wing, the Waterville mother, said it took a lot of effort and "jumping through a lot of hoops" to get Medicaid developmental services for her younger daughter. As a result, Amy can use noise-canceling headphones and get extra help at school, and she has also learned how to cope with anxiety and other social skills.
While Amy is getting the help she needs now, Wing said she's worried her daughter's future needs may not be addressed with the cutbacks.
"A lot of people don't realize that Edmund Ervin was the only place to get some of these services," Wing said. "It teaches them coping skills and how to be in life, and that's what my kids need, and what many kids need."
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