AUGUSTA — Children with mental and behavioral health needs end up “languishing” in hospitals for months on end thanks to long waiting lists and administrative barriers to treatment, proponents of a bill that would repeal the MaineCare “fail first” rule said.

Under the MaineCare rule, to be approved for treatment at a children’s residential care facility a provider must give clinical documentation that a child or adolescent’s situation has not improved with home or community-based services over the prior two to six months.

Rep. Ed Crockett, D-Portland, is sponsoring a bill aimed at removing some administrative hoops that make it difficult for families and providers to get children with behavioral and mental health needs the proper level of care.  ERIC OBERY/Legislature.Maine.gov

This often leaves children — defined as anyone under the age of 21 under state and federal laws — stuck waiting at the most restrictive level of care while their families and providers “jump through administrative hoops” to get them the proper level of care, the bill’s sponsor, Rep. Ed Crockett, D-Portland, said.

This bill, LD 387, comes on a personal note, he told lawmakers on the Joint Standing Committee on Health and Human Services on Thursday. He said his nephew, who has severe autism, has “cycled in and out of hospital emergency departments and Spring Harbor Hospital when he didn’t get the supports he needed in the community.”

With not enough providers, children end up on long waiting lists. As of this past December, there were 679 children on the list waiting for home and community-based treatment services. Those children had been on a list for 215 days — about seven months — on average, according to the Maine Office of Child and Family Services.

The number of children and time spent on a waiting list varied greatly across the state. In Washington County, there were 11 children who had been on a list for an average of 435 days. In Penobscot County, 143 children had waited an average of 208 days.

Children in state custody do not have a “home” where they can access these services, Crockett said, nor do children who are already hospitalized “have the opportunity to ‘fail’ a lower level of care,” Crockett said.

Dr. Ross Isacke

The dearth of providers and services is particularly apparent in rural areas. Franklin Memorial Hospital in Farmington has one psychiatrist who serves an area “at least as big as Rhode Island, if not Delaware,” Franklin Community Health Network Chief Medical Officer Dr. Ross Isacke said in an interview Friday.

“It’s actually greater than 50 miles for some people, you know, in our community,” he said. “If you were to, you know, travel from Eustis to the next closest psychiatrist at St. Mary’s (Regional Medical Center in Lewiston), that’s probably almost 90 miles,” he said.

As one example of the strain this is putting on hospitals and particularly on emergency departments, Isacke said the Farmington hospital opened an annex next to its emergency department earlier in the pandemic that “at one point this past year was filled with adolescents. It’s actually probably, honestly, more than (at) one point filled with adolescent behavioral health cases.”

Though that has eased a bit, “we still see so many, all the time, of kids who don’t have anywhere to go,” Isacke said.

“And really, it comes down to, you know, this failure of this, this law that’s currently in place not allowing us to have, you know, to meet this less restrictive community care before residential care. Because, you know, people in our community — they don’t have access to that in the first place.”

Gina DiDonato, Spring Harbor Hospital’s associate chief nursing officer, said the MaineCare rule can have “disastrous impacts.”

She told lawmakers at the Thursday hearing about a teenager who was admitted to the Westbrook psychiatric hospital in December 2021 after “languishing in a hospital emergency department for approximately seven weeks.”

His doctors quickly determined he needed residential care and submitted the application to the Department of Health and Human Services. It was denied for insufficient evidence that the patient’s needs could not be met at a lower level. After five months and multiple appeals, DHHS finally approved the application.

It then took another seven months to find a residential care facility that could take the teenager. A year after he was first admitted, he was finally transferred to a facility — in Florida.

“This patient experienced an entire year of holidays, a birthday, and a full year of his formative teen years in a hospital, further institutionalizing his experience at the highest level of care,” DiDonato said.

Repealing the MaineCare rule would allow children whose needs would be better met at a residential care facility to access those services more easily and efficiently, proponents said.

But not everyone sees it that way.

“We oppose this change because Maine is already institutionalizing children with disabilities unnecessarily due to the failure to provide timely access to home and community-based services,” said Atlee Reilly, legal director for Disability Rights Maine.

The American Civil Liberties Union of Maine, GLBTQ Legal Advocates & Defenders, the Center for Public Representation and the Maine Developmental Disabilities Council had also signed the advocacy agency’s testimony.

Reilly cited the report from the U.S. Department of Justice published last summer that said Maine was in violation of the Americans with Disabilities Act for its failure to provide adequate and appropriate behavioral health services to children.

“Instead, the state unnecessarily relies on segregated settings such as psychiatric hospitals and residential treatment facilities to provide these services. As a result of these violations, children are separated from their families and communities,” the report said.

Reilly said Maine should be addressing the “bottom of the pyramid” instead of making it easier to institutionalize children. He said many children who are stuck in hospitals and emergency departments have already been approved for residential services and are on a waiting list.

But those children will continue to be stuck there so long as residential providers are allowed to “pick and choose which youth to accept.”