PORTLAND, Maine — The U.S. Department of Justice announced this month that Maine is in violation of the Americans with Disabilities Act for over-institutionalizing children with disabilities in psychiatric hospitals, residential treatment facilities and even the state-operated juvenile detention facility.

Federal investigators have concluded that Maine unnecessarily segregates children with mental health and developmental disabilities even though federal courts have ruled they have a right to live and receive services in appropriate integrated settings, typically their homes and communities.

In a written statement, a spokeswoman for the Maine Department of Health and Human Services said the agency agreed with the findings and that the failings of the state’s behavioral health system date back decades.

“The administration has worked over the past three and a half years to rebuild a system of services that was dismantled during the previous administration, dedicating new funding to strengthen behavioral health in every budget and re-establishing the Children’s Cabinet,” spokeswoman Jackie Farwell said.

The investigation was sparked by a complaint from Disability Rights Maine, an advocacy agency for Mainers with disabilities, on behalf of a group of children with disabilities, alleging these children cannot access needed community-based services, resulting in their institutionalization.

Advocacy Agency Triggers Action

The organization said it hopes the Justice Department letter will finally push Maine to address the well-documented deficiencies in the children’s behavioral health system — which cause real harm to children and families — with the sense of urgency they require.

“It is time for Maine to turn away from expensive and ineffective institutional responses to behavioral health needs and toward a system of care that supports youth in their homes and communities,” said Atlee Reilly, the legal director for Disability Rights Maine.

Many children with disabilities in Maine, especially those in rural areas or with more intensive needs, are unable to live at home with their families because of a lack of community-based behavioral health services, federal investigators found.

Such services can range from assistance with daily activities to counseling to crisis services that can prevent a child from being institutionalized during a mental health crisis. Without them, too many Maine children wind up in emergency rooms, juvenile detention or institutions.

“Children with disabilities deserve the opportunity to live at home with the services they need and grow up in the community alongside their non-disabled peers,” said Assistant Attorney General Kristen Clarke of the Justice Department’s Civil Rights Division.

“With the increase in children’s mental health needs during the pandemic, it is more important than ever to provide support to children and families,” Clarke continued. “We look forward to bringing Maine into compliance with federal law.”

Justice Could Sue State

In a letter to Gov. Janet Mills and Attorney General Aaron Frey, Clarke said the Justice Department is hopeful that it can work with the state, but noted that it could sue the state for violating the Americans with Disabilities Act if it does not come into compliance.

Some of the biggest problems the investigation highlighted: hundreds of children with disabilities sitting on waitlists for hundreds of days, an insufficient provider network, especially in rural areas, and a lack of support for foster parents who provide specialized care for children with behavioral health needs.

As of October 2020, Maine youth were waiting for 3,642 community-based behavioral health services, with some waiting on multiple lists. In 2021, children with mental health diagnoses waited on average 121 days for home and community treatment services, with some languishing as long as 2½ years.

In contrast, during that same period, children waited on average of only 30 days for a residential bed.

“For some parents, the strain of going months without necessary services in place has reached a breaking point, forcing them to quit their jobs to provide care for their children’s escalating needs or to send their children to institutions,” Clarke wrote in her letter to Mills and Frey.

Calls to the state’s understaffed crisis hotline are frequently not answered at all, the investigation found. When families get through, they are often told that no services are available, or told to take children to hospital emergency rooms or call the police.

Even making it to the top of the wait list doesn’t guarantee a child the services she or he needs, investigators found, because in Maine’s rural areas the specialists needed to provide the services do not exist, either because state reimbursement rates are too low or regulatory requirements are too burdensome.

In 2020, there were 8,236 calls to the crisis hotline for children 17 years and younger, the report said. Only 37% of those calls were referred to mobile crisis services. For calls that did get a referral, a typical caller had to wait over an hour before a mobile crisis team arrived.

As a result, Maine children must enter treatment facilities in and out of state, or even the state-operated juvenile detention facility, Long Creek Youth Development Center, to receive behavioral health services they have a right to get in their homes and communities, the investigation found.

93 Beds Available Statewide

Once institutionalized, Maine children stay in one of the 93 residential beds available in the state for an average of 246 days, even though Maine says such treatment should last no more than four months, investigators said. This forces Maine to put children in crisis on wait lists or send them out of state.

Over the course of the two-year federal investigation, about 250 children were institutionalized at any one time. The report also found that some children remained hospitalized for months after they were found ready for discharge because services at home remained unavailable.

In a recent state-commissioned report, the Children’s Center for Law and Policy found that 73% of those held at Long Creek longer than 30 days were awaiting community placement, and 53% were there to get “state care.”

In recent years, several children in acute crisis and struggling with thoughts of suicide spent weeks or months at Long Creek isolated on suicide watch due to the lack of appropriate treatment options for them, investigators found.

“Maine is using Long Creek as a de facto children’s psychiatric facility,” Clarke wrote to Mills and Frey.

Maine DHHS said it shares the Justice Department’s goal of improving behavioral health services for Maine children in their homes and communities, and that it is fully cooperating with the investigation into the behavioral health system’s shortcomings, Farwell said.

The pandemic and its resulting challenges, from providers’ inability to hire and retain qualified staff to a greater need for behavioral health services due to anxiety and isolation caused by COVID-19, have slowed the department’s progress and more work remains, Farwell said.

“We share the strong sense of urgency in ensuring that Maine children with disabilities have timely access to an array of high-quality, evidence-based services that prevent institutionalization whenever possible,” Farwell said, “and will continue to work diligently towards that end.”

State Expedites Funding

To strengthen Maine’s behavioral health system, the department is expediting more than $12.1 million in state funding to providers to strengthen services to help keep those having behavioral health crises out of inpatient settings, Farwell said.

The payments will go to such services as assertive community treatment for those with serious and persistent mental illness, targeted case management, home and community treatment programs, and outpatient therapy for children and adults, Farwell said.

She said DHHS designed the one-time, pandemic-related payments to offset pandemic-related setbacks, reduce the use of hospital emergency departments for behavioral health crises, meet increased demand due to the mental health effects of the pandemic, and stabilize and reduce wait lists for services.

As passed by the state legislature, Mills’ supplemental budget and the biennial budget, along with the bonus payments for workers funded by the American Rescue Plan, invest $230 million across 2022 and 2023 to support the behavioral health workforce, its capacity and the resilience of providers, Farwell said.

“The administration believes Maine children with disabilities or behavioral health needs should have timely access to high-quality services in their communities to prevent unnecessary institutionalization,” Farwell said. “The department welcomes the opportunity to engage with the Department of Justice and other stakeholders to improve the children’s behavioral health system in Maine.”

Last week’s announcement comes as the Department of Justice celebrates the 23rd anniversary of the groundbreaking Supreme Court decision Olmstead v. L.C., which holds that unjustified segregation of people with disabilities in institutions is a form of unlawful discrimination.

Last month, the agency struck a deal with West Virginia to improve its children’s mental health system. Like Maine, West Virginia routinely sent numerous children with emotional or behavioral disorders to institutions hours away from home because of a lack of community-based mental health services.

© 2022 Portland Press Herald
Distributed by Tribune Content Agency, LLC

Read more stories like this one. Sign up for Disability Scoop's free email newsletter to get the latest developmental disability news sent straight to your inbox.