Following an investigation of the children’s behavioral health system, Maine’s Department of Justice (DOJ) has determined that the state does not sufficiently provide community-based programs.
The investigation uncovered:
- Children are typically segregated into other institutions or the juvenile justice system when they can’t get the services they need;
- The state advertises such community-based programs through MaineCare but doesn’t actually provide them in a timely manner;
- Children who are eligible for community-based services seem to remain in limbo and at risk of staying in an institution or going into one; and
- There is a big push from families to have services available to children at home because of prior abusive, traumatic, or neglectful situations in institutions.
In a statement from the DOJ, Assistant Attorney General Kristen Clarke in the Civil Rights Division, said in part, “Children with disabilities deserve the opportunity to live at home with the services they need and grow up in the community alongside their nondisabled peers. We look forward to bringing Maine into compliance with federal law and achieving a resolution that will benefit children with disabilities across the state.”
Disability Rights Maine (DRM), working in coalition with ACLU of Maine, GLBTQ Legal Advocates and Defenders, and the Center for Public Representation, filed the initial complaint with the DOJ on behalf of a group of children with disabilities, claiming they couldn’t access appropriate community-based services and were at risk of being institutionalized.
Katrina Ringrose, deputy director of DRM, explained how this has been a long-time problem with the state. It was the lack of access to appropriate services that prompted her organization to launch a children’s behavioral health assessment in 2018. They found the state’s response to health services problematic then.
“What we found was that children and their families were reporting that they couldn’t access the services they needed,” she said. “It became clear that Maine had significantly been disinvested in the system for several years.”
Maine’s DOJ uncovered numerous issues including lengthy waitlists for services, an insufficient provider network, inadequate crisis services, and a lack of support for foster care parents with kids who need specialized services.
Those issues have resulted in children either being placed in a healthcare facility or the Long Creek Youth Development Center, which is the state-operated juvenile detention facility. And if they are placed in a healthcare facility, it may not necessarily be in Maine. Often, those facilities are out of state—like Utah or Arkansas—certainly making visiting hours a bit of a challenge.
In response to the DOJ’s findings, Steven Schwartz, legal director at the Center for Public Representation, noted in a released statement: “Several other states, including neighboring Massachusetts and Rhode Island, have created a comprehensive system of intensive home-based services that allow children to receive needed treatment while remaining with their families and in their neighborhood schools. Maine needs to do the same.”
Ringrose agreed, saying kids are traumatized when they are removed from their homes. Their families want in-home, community-based care but it’s been a vicious cycle of inadequacies within the state system and Maine doesn’t appear to be in a hurry to fix it.
“We don’t see this sense of urgency from the state but we’re hoping the DOJ findings will help develop these services,” she said. “But so far, there’s been no plan to bridge the gap.”
Kelly Barton, MPH, FACHE, president of Maine Behavioral Healthcare in South Portland said her organization often works in conjunction with DRM on improving care sometimes on a case-by-case basis.
She noted, “I think what I’ve seen is the state—especially with child behavioral services—they have a robust plan, but they don’t seem to be moving on it. They refer to their strategic plan but we’re not seeing a lot of action on that plan to move things forward.”
Sally Ann Cooper, MD, a child and adolescent psychiatrist who works with Maine Behavioral Healthcare, has practiced in the state for more than two decades. She has been surprised at how children’s behavioral healthcare has plummeted.
“The last couple of years in particular—it’s just astonishing how the system has really disintegrated,” she said. “And the pandemic certainly accelerated this process. But we have so little to offer children and families. There’s this gap between the highest level of care, which is the hospital, and nothing in between.”
Tamara Hunt, Ph.D, lives in Old Town and has worked as an assistant professor for the University of Maine. She knows firsthand what it’s like to navigate the healthcare system when disabilities are at stake. Her daughter Kaymi is now 18 and has dealt with 29 medical diagnoses, six mental health diagnoses, as well as developmental and intellectual diagnoses.
Hunt adopted her as an infant as a kinship placement, which means Kaymi is the daughter of a relative. Tamara took her in saying, “I didn’t want a relative of mine to go through foster care.”
Kaymi was polysubstance exposed in utero and that is the basis for her physical and mental problems. Entering the healthcare system when her daughter was about three years old, they have been repeatedly denied services, report neglect and abuse at a New Hampshire facility, and been denied the opportunity to have care at home.
“When it came to services, it became difficult to get what Kaymi really needed,” Hunt explained. “The state might send behavioral health support. They would focus on her perseverating, but her autism is secondary to her brain disease. They would focus on a detail that quite frankly was the least of her problems.”
Hunt began working with Ringrose at DRM in 2013. They got two agencies in Bangor that would be willing to provide in-home wraparound behavioral and nursing services 24/7. Hunt’s home would effectively be the treatment facility and the state would, in turn, pay the agency.
Together, Ringrose and Hunt wrote a proposal and submitted it to MaineCare. But they were denied because MaineCare deemed it a duplicate service already available in the community. Hunt’s response was, “Yes, they were available in the community but harnessing them all together was difficult.”
Hunt noted while it’s great the DOJ investigated the problem, just issuing its findings is not enough. In her experience, the Department of Health and Human Services has been untouchable for a long time and needs to be held accountable.
“Families are experts on their children, but that gets lost,” she said. “The state needs an outside accountability watchdog. The state is too far removed from their cases, but they have the final word. The system is unkind to sick people.”
Barton spotlighted long waitlists for services and some services, like the wraparound services Hunt mentioned, no longer exist because the state discontinued them in 2013.
She also pointed out another impact is the immense pressure on emergency departments. Over the last two years, the number of patients seeking behavioral healthcare in the emergency departments has nearly doubled and that increase remains.
Barton said, “The big issue is that we don’t have the intensity of the wraparound services we need, which means we can’t take a holistic approach. All of these things have an impact on each other and we need to stop the cycle.”