BANGOR, Maine — Children in Maine who have the most severe struggles with behavioral and mental health are ending up in facilities hundreds if not thousands of miles away from home because the state has no option for them.
Maine has no long-term psychiatric residential treatment facilities, a specialized form of treatment that is highly structured and designed to stabilize and improve the complex mental and behavioral health needs of kids. PRTFs involve 24/7 care, medication management, and violence intervention.
In most cases, these kids have been dealing with these behaviors since early childhood, and other facilities in Maine are not designed to handle the intensity of their cases for the duration of time they need this care in order to stabilize.
Some parents say the only place that will care for their children in moments of crisis is the emergency departments at hospitals. Those emergency departments have psychiatric units to help medicate and stabilize patients but are not intended to care for them long-term; however, many kids are getting stuck there for weeks.
Dr. Michael Melia, chief of emergency medicine at Northern Light Health Eastern Maine Medical Center in Bangor, said some kids have been in those emergency psych units for more than 90 days.
"The entire time that I've been here, it's been an issue, and it's an issue that just continues to grow," Melia said. "The patients that we're seeing are staying in emergency departments longer and longer."
Melia said some patients have been as young as 5 years old and that many of these children's issues present as violence.
"Our most violent patients have often been pediatric patients," Melia said. "They don't know that they're being violent. They're not intentionally trying to hurt somebody or harm somebody, but it's just part of the way that they interact with the world."
"If they're with me for 10 days, there's a good chance that there are no resources available for them. Those are the patients that we know are going to be with us for long periods of time," Melia said. "Because there are no resources in the state for many of these patients -- at all or very few -- and so those are the patients that wind up going to Ohio and Texas and Florida and all over the country because we can't support them locally."
The lack of services is leading to a bottleneck, specifically in the emergency department psych units, where patients share rooms, with extra beds on the floor.
Maine’s System Assessment of Children’s Behavioral Health completed at the end of 2018 cited the need for a secure (locked) facility. Maine Department of Health and Human Services spokesperson Jackie Farwell said there is a small number of youth who require this level of care.
A mother of a teen who needs this level of care, who asked to remain anonymous, told NEWS CENTER Maine that her son was so violent at home, that DHHS case workers told her she could be charged with endangering her other teen children if she kept her son at home.
"You're backed into a corner. You're being told by the hospitals, the emergency departments that shouldn't be housing him and are struggling to take care of him, 'He needs a service that is not us. We are not appropriate to care for him. You need to take him home.' And being told by other services, 'If you take him home, we could charge you with failing to protect your other children.' It's like being told to choose between your children," she said. "He's engaged in a lot of violent acts, very, very serious ones that would otherwise be described as life-threatening, violent engagement with myself and with others, acts that could absolutely kill another person. Is it his intent in that moment to do that? No. He's unaware of that."
She decided that sending him to a PRTF out-of-state, where he can get the level of care he needs, was her only choice. She said she has lost jobs because of the amount of care her son requires. He is currently in Tennessee.
"There are therapeutic interventions. There are specialists. There are programs that exist for children like him. But accessing those resources is next to near impossible in the state," she said.
Part of the reason she asked to remain anonymous is from the backlash from strangers who she said have approached her in public, questioning her choice.
"You don't want to accept that you're not enough to care for your child. That's an incredibly hard pill to swallow," she said.
"If anything, this is the biggest act of love. This is to say, 'I love you so much that I am willing to navigate this broken failure. That is not my failure. That is not your failure. I'm willing to navigate the muddy waters to find a way to get you the treatment that you need to keep you safe. Because I love you so much and I believe that you are deserving of the treatment that you need to grow as a person.'"
"At least there he can have access to his education, something he can't get in the back of the emergency department. At least there he has access to therapeutic interventions that he so desperately needs. He has access to psychiatry, med management, nursing peers, peers like him, freedom of movement, his own clothing, things he can't get in the back of an E.R. here when the state fails to make resources available for him," she said.
Maine DHHS has been trying to build and staff one of these facilities but has run into significant hurdles.
"Maine has made considerable efforts toward establishing a PRTF," Farwell told NEWS CENTER Maine in an email. "Through 2019 and 2020, the Department worked to establish MaineCare rules and a rate for this service and sought qualified and interested providers to offer the service in Maine. After the rule and rate were established, no provider stepped forward to provide the service. Providers indicated concerns that the rules and corresponding payment structure would not result in a financially viable service."
DHHS temporarily paused further work towards a PRTF to study and update the rate structure, Farwell said. In 2022, DHHS sought feedback from providers and met with national entities providing PRTF services across the country to study successful service delivery that balances the safety and well-being of youth receiving care and financial viability for providers.
In public testimony, DHHS staff said sending kids out of state for PRTFs costs Maine $300,000 per year.
"The Department developed a new rate methodology and work continues to identify qualified providers willing to offer the service," Farwell wrote. "An in-state PRTF facility would fill a current gap in the continuum of services available in Maine. It may include youth needing non-hospital psychiatric treatment, youth needing a step-down from inpatient hospitalization, youth currently receiving or seeking treatment in out-of-state PRTFs, and youth in other settings that meet medical necessity for a PRTF level of care."
Currently, Maine has 21 children's residential care facilities, comprising a total of 230 beds. Those are places kids can get 24/7 intensive treatment outside of their homes, but the state said CRCFs are meant to be short-term options, lasting usually about three to six months.
The state has certain medical criteria for which children can use a CRCF, defined by MaineCare.
Farwell said this service is available to "youth who have a Serious Emotional Disturbance and a behavioral health diagnosis and exhibit behavioral challenges to a significant degree over the previous six months, or those challenges are reasonably predicted to last at least six months. These youth also must display four of the following conditions:
- Failure to establish or maintain developmentally appropriate relationships with adult caregivers or authority figures
- Failure to demonstrate or maintain developmentally appropriate peer relationships
- Failure to demonstrate a developmentally appropriate range and expression of emotion or mood
- Disruptive behavior sufficient to lead to isolation in or from school, home, therapeutic, or recreation settings
- Behavior that is seriously detrimental to the youth's growth, development, safety, or welfare, or to the safety or welfare of others; or behavior resulting in substantial documented disruption to the family including, but not limited to, adverse impact on the ability of family members to secure or maintain gainful employment
Youth with an intellectual disability or autism spectrum disorder who exhibit significant functional impairment may also benefit from residential care.
Children are assessed for a residential level of care using a standardized, evidence-based assessment, administered by a contracted independent assessor."
Farwell said the state is taking other actions while it develops the PRTF in-state.
First, DHHS staff are trying to decrease the number of kids who actually need this type of out-of-home care by getting involved earlier.
The state is also in the process of creating a new "after-care" requirement, meaning a Family Transition Specialist must follow up with the child and their family for six months after they've left that short-term facility to help them transition successfully. The FTS is required to have contact with the child and their family at regular intervals (once a week for the first 3 months, then two times per month for the remaining months, at minimum) to follow up on the member’s status, assess any needs, and provide support as needed.
Also included in the governor's budget is a plan to develop a standardized referral process for kids who need this residential treatment. The governor also signed a resolve that will require providers to get approval from DHHS if they want to discharge, stop serving, or reject a child at their facility.
Parents who have struggled to take care of their kids say developing a PRTF is years too late.
"It's a type of hell that you can only understand if you've walked through it."