A child from Clifton has waited more than nine months for help with a serious mental health issue that caused the student to miss school almost every day this school year and last school year, according to the school district’s leader.
The child is not the only one. RSU 63 Superintendent Susan Smith learned this spring that a total of three students from the Penobscot County town of Clifton, population 900, had been waiting more than six months to get treatment for often debilitating mental illness.
The Clifton children are the result of a system in peril. Maine is legally obligated to ensure no child waits more than six months for in-home behavioral health services, but young people across the state have been waiting far longer.
Nearly a decade after being relieved of court oversight on the matter, the Maine Department of Health and Human Services has regressed: More than 800 children are waiting for just three programs.
Kids with behavior disorders who are aggressive toward others are not getting the counseling and direction they need to reshape their lives. Children with autism are waiting for help to learn to communicate. Still others are waiting for help managing extreme anxiety that prevents them from going to school.
In the end, there is no guarantee that children in need of mental and behavioral health services that are covered by MaineCare, Maine’s Medicaid program, will get services quickly or, sometimes, at all, especially in rural areas of the state, according to interviews with providers, oversight organizations and parents.
As Maine’s protection and advocacy organization for people with disabilities, Disability Rights Maine has been negotiating with DHHS since the fall, in lieu of a lawsuit, to encourage the department to ensure children have timely access to mental health care, said Peter Rice, the organization’s legal director.
If those negotiations fail, it’s possible the organization will sue the state. It would not be the first time. A class action lawsuit nearly two decades ago forced the department to reduce waitlists at a time when more than 500 children were waiting for services. The state ultimately settled and pledged that no child would wait more than six months to receive treatment, as federal law requires.
Current numbers, however, show more than 800 kids who are eligible for services on hold, though it’s not clear just how many have waited more than six months.
As of April 27, there were 336 young people waiting for what’s called home- and community-based treatment under MaineCare Section 65, according to a waitlist obtained by the BDN. About 28 percent of the children had been waiting longer than three months, though the waitlists don’t say how much longer. The program sends behavioral health professionals into the homes of children with serious emotional disturbances and disruptive behavior. The specialists work with the children in the context of their family life.
In addition, as of May 11, there were 312 young people with cognitive functioning issues waiting for non-specialized services under MaineCare Section 28. About 43 percent had been waiting longer than three months.
And 156 children, likely most with autism, were waiting for specialized services under Section 28 as of May 11. The BDN also obtained a waitlist for this service from October 2016, back when the lists stated how long each child had been on hold. About half had been waiting more than six months then, with some waiting nearly two years.
There is overlap between the three lists. There are also additional programs not represented here because they do not have centralized waiting lists.
Providers said that the available waitlist numbers understate the need, as many families give up waiting or are just never referred to services, and that even when people get into a program it’s rarely enough. Still others called for a review of the children’s behavioral health system as a whole.
DHHS did not respond to questions about whether it has specific plans to reduce the waitlists and whether it wants a system overhaul.
When children don’t get help, many “end up in institutional care as a result of that, whether it’s emergency departments, psychiatric hospitalization or our juvenile justice system,” said Katrina Ringrose, the children’s team leader with Disability Rights Maine. “The consequences are dire.”
‘Problems become more severe’
Smith, the RSU 63 superintendent, feared that the delay in state assistance was causing the mental health of one of her Clifton students to deteriorate even further. So after months of trying different educational options for the child and attempting to navigate a complex social services system, she decided to take more unusual action by getting permission from her school board to go public.
She wrote to DHHS’ leader, Commissioner Ricker Hamilton, in a letter dated April 24, to ask if they could work together to find a solution. “I find it atrocious that these kids are not getting the help they need,” she wrote. “Problems become more severe as time passes.”
The student missed 138 of 175 school days last school year and has missed all but four days this school year.
She received a letter back from DHHS a month later that said “resource coordinators” were working to enroll new providers and expand the coverage areas of existing providers. It didn’t say how.
DHHS didn’t respond to questions about how long that work had been happening or how well it was going.
Smith faced a conundrum: By law, students of a certain age are supposed to be in school, and parents face a civil penalty for violating that law. But some children can’t attend classes if their diagnosed mental health challenges aren’t addressed.
So the district, which serves Holden, Eddington and Clifton, tried a number of alternatives. It gave the child the chance to attend school for part of the day. It offered tutoring on site and off site. It sent the child to an alternative school, then tried an abbreviated day at the alternative school. It offered online sessions. And it had various counseling options available, but they were not enough to address the child’s severe needs.
Without the right counseling and support at home, the student wouldn’t walk out the door.
Smith, who is obligated to tell DHHS when children accumulate a certain number of unexcused absences, called child protective services within DHHS last November. She shared her concerns, hoping it might spark action, but received a letter back saying the circumstances “do not meet the criteria to assign a child protective assessment at this time,” she said.
The child continued to miss school. Smith had a sheriff’s deputy notify the family again of the law, but the student racked up more absences, requiring Smith to call child protective services a second time in January. That time, she said, she didn’t hear back.
The family “is doing the best they can, honestly,” Smith said. The family did not reply to the BDN’s request for comment for this story, made through Smith for privacy reasons.
As the child continued to miss school, Smith said she tried making more phone calls to people she thought could help. She eventually connected with Jane Sawyer, a behavioral health program coordinator at DHHS, who took her call March 30.
That’s when Smith learned just how long the student had been waiting for services as of that day: nine months.
After additional phone calls, she learned the particulars. The student had been on a waitlist for non-specialized Section 28 services for 284 days, and on a waitlist for home- and community-based treatment for a minimum of 150 days.
At least two other Clifton students had been waiting for various services, too.
Non-specialized Section 28 services are often, but not necessarily, for children with intellectual and developmental disabilities who need help learning basic daily living skills, improving social skills or managing behavior. The staff who work with them do not need a bachelor’s degree and often earn minimum wage.
The specialized Section 28 program, meanwhile, provides applied behavior analysis treatment mostly to children on the autism spectrum. The treatment has been validated by decades of research.
The other program, called home- and community-based treatment, under Section 65, is provided by a two-person treatment team — usually a social worker and a bachelor’s-level behavioral health professional. The duo aims to help young people with diagnosable mental, behavioral or emotional disorders and their families. Parents may be using substances, or have their own developmental or mental health challenges.
The services are provided in the home and community in part because workers are trying to address clients’ isolation.
“The community-based services are so important and effective because they allow us to accompany parents and children in the community to do a variety of different activities and allow them to participate in society like anyone else. A lot of families haven’t been out to dinner for years because they’re worried about what will happen in the restaurant,” said Doug Patrick, director of case management and behavioral health services at Woodfords Family Services, based in Westbrook.
At the beginning of April, the Clifton student who prompted Smith’s inquiry was assigned one member of a treatment team but as of the end of May was still waiting for services and not attending school, Smith said. The child is now on an additional waitlist for a more intensive service called multisystemic therapy.
Still dealing with the student’s truancy, Smith did what the law spells out: She brought the family to civil court. They face a fine, but Smith said she hopes the legal route will help more than it hurts. She couldn’t find a way to get her student services, but perhaps a judge can, she hoped.
The services available for children today have their origins in a number of prominent legal battles about two decades ago.
The first lawsuit, French v. Concannon, filed in January 1997, alleged Maine had not delivered services for kids in accordance with Medicaid federal law. The state agreed to a number of improvement measures in its 1998 settlement.
Meanwhile, a Maine law passed in the spring of 1997 directed various state agencies to oversee the design of “a comprehensive, integrated system” for children’s mental health services. Children at the time were being placed in psychiatric hospitals at twice the national rate, creating more expense and reflecting the lack of services in the community.
But it took another lawsuit, filed in 2000, to actually push the government to develop more capacity for care throughout Maine.
In that 2000 class action suit, Michael and Susan Risinger of Winslow, on behalf of their 13-year-old daughter Jill Risinger, and Annmarie Fitzpatrick of Augusta, on behalf of her 14-year-old adopted son Eric Fitzpatrick, sued the state in U.S. District Court. Jill Risinger had Angelman’s Syndrome and functioned at the level of a 20-to-35-month-old child; Eric Fitzpatrick had fetal alcohol syndrome, and had experienced abuse and neglect.
Together with Disability Rights Maine, they asserted that the government had violated federal Medicaid law by letting their children and others “languish on waitlists, by providing on-again-off-again services, by providing inadequate services, and by maintaining a system of unpredictably unequal access.”
The state agreed to settle in 2002 and said it would provide in-home mental health services to kids who needed them in accordance with the law: “generally within an outer limit” of six months. It also agreed to develop a system within four months of the settlement to track children who were waiting, so it could make sure kids were getting timely help.
Making the changes proved difficult, however. When the government failed to keep its agreement, the court in 2003 ordered state officials to hire an outside expert, Clarence Sundram, to advise the government. He found that, as of February 2003, 869 of 1,084 kids had been waiting longer than six months for in-home mental health services.
The work took a long time, but it was a collaborative effort between the government, providers and the attorneys involved in the litigation, said Patrick, who was the state’s system manager for children’s behavioral health services from 2006 to 2012, and now works at Woodfords.
“A lot of our work was facilitating development of programs within existing agencies and also supporting the development of new agencies to provide services,” he said.
For several years, the state managed to ensure kids had timely access to services. But after 2013 and 2014, it started to slip, said Rice, with Disability Rights Maine. Medicaid reimbursement rates, which haven’t changed since the programs were created in the 2000s, didn’t keep up with costs, and it became harder for providers to find staff, especially in more rural places.
Today it is difficult to determine how many children are waiting and for how long.
For some time, the waitlists showing how many kids needed services in each community were posted to DHHS’ website. They didn’t publish names or identifying details, but providers used the lists to figure out where to offer services. Then, this winter, the waitlists disappeared from the website.
“They pulled that down and then didn’t tell us what was happening with it, didn’t tell anyone what was happening, in those two months. In that time nobody could be pulled off the waitlist because no one knew where they were,” said Lydia Dawson, executive director of the Maine Association for Community Service Providers.
Today, the waitlists are emailed to the providers directly, but they’re not available publicly, and there’s no assessment of the services as a whole. KEPRO, the company that manages the referral system for the state, didn’t respond to several phone calls.
“The children’s behavioral health system in Maine needs a real serious look as a system,” said Malory Otteson Shaughnessy, executive director of the Alliance for Addiction and Mental Health Services. “It is hard to get any information. In some states you just go online and see report-outs of waitlists, number served, hot spots, but in Maine the providers can’t even get the information.”
A number of people interviewed echoed the call for a review of the system in its entirety. They said it’s unclear how effective services such as non-specialized Section 28 and home and community based treatment are for children with the diagnoses they’re serving.
“It’s well over $100 million of state dollars. It’s a super complicated set of services to try to deliver. It’s a really important part of state government, and we’re not going to have a strategic plan? It doesn’t make any sense,” said Lindsey Tweed, a child psychiatrist and president of the Maine Council of Child and Adolescent Psychiatry.
The current system wasn’t deliberately organized, said Tweed, who also served as medical director of the Office of Child and Family Services within DHHS until 2015. For example, the first iteration of non-specialized Section 28 services was just for people with developmental disabilities.
But, after a legal decision, it’s now used for kids with a wide range of diagnoses, such as post-traumatic stress, attention deficit hyperactivity disorder, depression and anxiety, even though he’s not aware of any research backing the program’s effectiveness at alleviating those issues.
When should a child receive one service as opposed to another, or both? How can Maine control the quality of the services? “We need a plan. We need to think that through,” he said.
Given the growing waitlists at the end of 2015, Disability Rights Maine started putting together another lawsuit against the state, Rice said. But, understanding procedural motions would take at least a year, staff decided to try a different tack. Hamilton, the DHHS commissioner, agreed to negotiate with them.
“They know that we could sue them. They know that we would probably win, or they would probably settle,” Rice said. “So let’s skip all that procedural stuff and get down to the nitty gritty. How do we solve this problem? They agreed that was a better way to go.”
Disability Rights Maine is asking the state to hire an expert to recommend improvements to the system as a whole, said Ringrose, with the organization. DHHS did not respond to a question about what it hopes to achieve through the negotiations.
Behind the scenes, without providers available to offer services, children continue to wait.
The issue comes down to providers’ business models. It’s more difficult for them to take on clients who are spread out geographically, given that they can’t get reimbursed for mileage or travel time, and it’s harder to find qualified staff in rural places, said one behavioral health provider, Care & Comfort, which serves the towns around Bangor, including Eddington, but not the adjacent town of Clifton.
“Some towns are just more difficult to hire in than others. Those are going to be your more rural areas where it’s difficult to find your bachelor’s level [behavioral health professional] staff and/or your clinician, your master’s-level staff,” said Mike Stair, president and chief operating officer of the organization.
The situation is “a crisis of epidemic proportions,” said Kelly Moores, CEO and founder of Open Arms Developmental Services in Columbia, in Washington County. “As far as serving a child within the first 90 days, that almost never happens.”
She is shutting down her agency June 30 because she can no longer cover the costs of providing non-specialized Section 28 services, and described the professional but also personal pain of ending operations. She saw her son, Gabriel Howard, benefit from a number of services when he was young, including non-specialized Section 28. Howard, now 13, has several diagnoses, including autism and Tourette Syndrome.
“What my son can do now because of the early intervention that he got is going to be instrumental in him being a productive member of society,” she said.
“I would love to be able to continue to serve the children of Washington and Hancock counties. But unfortunately the state of Maine does not really hold what we do, and what these other organizations do, to be valuable,” she said. “They’re setting up a rather large population of children and families for failure.”
In 2014, there were more than 6,095 people diagnosed with autism on MaineCare, according to a DHHS report. That represented a 46-percent increase from five years prior and an 848-percent increase from 2000.
Another provider, Community Care, described how workforce issues contribute to the waitlists. “We’re just not getting qualified applicants coming through the door,” said David McCluskey, executive director of the organization, which is based in Bangor and has offices in Skowhegan and Saco.
With staff members based out of their homes, they can only travel a certain distance away to see clients before the organization starts losing money, McCluskey said.
Even if providers have staff in the right area, their caseloads may be full, he said. In other instances, multiple families may need services, but there aren’t quite enough to justify hiring an employee full-time. The organization also avoids relying on one employee to provide services far from a population center, in case that person leaves.
“You try not to create these little islands of services throughout the state,” McCluskey said. “What happens if they get done? Now you’re stranded with nine or 10 clients you have a responsibility to serve.”
With the current Medicaid reimbursement rate, Community Care can travel 30 to 45 minutes away from a particular base. It previously won a grant from the John T. Gorman Foundation to extend its coverage area to more than an hour away, McCluskey said, but those funds ended several years ago.
Could Community Care serve Clifton? Probably, McCluskey said, but it depends on where in Clifton. It’s right on the edge.
Maine Focus is a journalism and community engagement initiative at the Bangor Daily News. Questions? Write to firstname.lastname@example.org.