How Maryland failed families and children with complex needs

In Maryland, a prosperous state that’s home to some of the nation’s best behavioral health care and social-work institutions, dozens of children every year languish in hospital emergency departments, sleep in government offices or live in hotel rooms with no one but an aide camped out in the hallway to care for them.

How did it come to this?

Caring for children with highly complex emotional and behavioral needs is a challenge across the country. But in Maryland, the problem has worsened over the last decade — and many blame outgoing Republican Gov. Larry Hogan.

Several children’s advocates, health care executives and current and former state employees say state officials have cut costs, reprioritized and shrunk the size of government. Now, they say, these children are suffering the consequences.

“Why are we in this predicament? Because over the last eight years, they sat on their hands — sat on their asses — and did nothing,” said Patrick Moran, president of AFSCME Council 3, the state’s largest public employee union, adding that members who work with children have been fleeing agency positions as a result of low pay and egregious work loads. “There have been very adverse effects on children who are struggling,” he said. “There are no longer adequate facilities to place them. We’re down hundreds of jobs for caseworkers, social workers, and psychiatrists to help these kids cope. It’s just not there.”

One major change has been a move away from a proven team approach that provided specialized services to families. Short- and long-term treatment facilities were shut down without building out the services that families needed to keep children at home and in school. The Hogan administration has also left at least 15% of positions vacant in the state health department, shifted $100 million in Medicaid funds to the general fund and set low reimbursement rates that have made it difficult to find providers for children with disabilities and other specialized needs.

As a result, unlicensed facilities — hospitals, offices and hotels — have become the de facto dumping grounds, and the numbers of children in this predicament have risen. In other cases, kids are living at home with parents who are desperate for relief.

Hogan administration officials counter that the number of children and families affected is relatively small, the needs too complex to be scaled. They point to several investments they’ve made over time. And, they said, much of their work centering on at-risk youth ground to a halt during the coronavirus pandemic, which trumped all other priorities.

“Each one of the cases out there is an individual story; there is no one cause, individual or agency at fault; it is a complex, multi-stakeholder, public-private problem we’re facing across the U.S.,” said Bryan Mroz, director of the Maryland Department of Health Healthcare System, in an interview earlier this year.

Maintaining a full continuum of care requires constant effort, the health department and the Department of Human Resources said in a joint statement. They added that nearly all children in the state’s foster care system have their needs met.

But advocates, lawyers and families experiencing behavioral health crises describe the placement options available to Maryland’s children as scarce, overly selective and often too slow to respond.

“As much as we say that mental health is such a crisis, at the end of the day you really, truly have to follow the dollars to say, ‘Do we actually value it as a society and are we making the right decisions?’ ” asked Dr. Harsh K. Trivedi, president and CEO of Maryland-based Sheppard Pratt, considered among the largest private, nonprofit mental health treatment centers in the United States. “We also have some of the best mental health services in the country right here. We just have to choose to fund them and let them do what they’re really good at.”

In particular, those involved in the matter point to three specific breakdowns in the system: a change in philosophy that cut down on the number of out-of-state inpatient options without increasing in-state placements, the decline of holistic “wraparound” care, and the state’s failure to account for a coming wave of demand for mental health services.

Change in philosophy

In an ideal world, a vast continuum of social services and programs would be available to children and families with complex needs. This includes children with autism spectrum disorder, severe trauma or other co-disorders that could cause them to harm themselves or others. Across Maryland, kids have injured their loved ones, flung themselves off balconies, set fires and run away from home.

Options for optimal care would include day schools, outpatient mental health treatment and at-home aides. For more intense cases, short-term respite care facilities could help families and support networks catch their breath, potentially keeping kids away from emergency departments. At the end of the spectrum are longer-term residential centers for kids who need intensive therapy and may not be safe at home.

The first four years of Gov. Martin O’Malley’s administration included what Kevin Keegan believed was creative leadership by the Democrat’s appointees. A plan, created in 2008, provided a blueprint for caring for children with intense and specialized needs. But by O’Malley’s second term, Keegan — a former Department of Human Resources official who now serves as Catholic Charities of Baltimore division director — said the momentum around youth and families started to decline, prompted by administrative turnover and a recession.

After Hogan took office, officials began changing how they funded such services. They also underwent a shift in philosophy, backed by children’s advocates, that favored closing down residential treatment centers and short-term respite facilities in favor of more home- and community-based placements.

At the same time, state officials, including Comptroller Peter Franchot, were alarmed both by the high cost of sending kids out of state and reports of abuse in the facilities. He pushed successfully in 2017 to start bringing them back to Maryland after a teenager died in one residential treatment center in Delaware, though some children continue to travel far to receive the care they need.

Those two decisions led to a scarcity of resources for Patience, a 14-year-old girl who spent five months earlier this year at an inpatient mental health treatment center in Utah. Since adopting Patience from a Delaware foster care system in 2017, her mother, Danielle Leclair, has emptied her bank account, shuttled her daughter back and forth across state lines and poured all of her energy into finding appropriate care for her daughter.

In an act of desperation, Leclair wound up paying more than $100,000 for the Utah placement — a private facility for teens and adolescents — when no other inpatient service in Maryland could be found.

The number of residential treatment center beds available for such kids in Maryland has declined, said Ann Geddes, director of public policy at the Maryland Coalition of Families, which advocates on behalf of families experiencing behavioral health challenges.

But as those avenues for care diminished, Hogan administration officials did not expand services to meet the children’s needs, Geddes said. That has left only one place to take children when their behavior at home becomes unmanageable: hospital emergency rooms. Some kids sit there for weeks and months with no treatment for their worsening behavior and no end in sight to the waits for more appropriate placement options. Health care workers and executives are united against the use of locked, isolated hospital units to handle the failures elsewhere in the system.

Maryland’s system is top-heavy, concentrating care in hospitals and inpatient treatment rather than providing services in the community, said Lauren Grimes, assistant director of the Community Behavioral Health Association of Maryland. “They cut the number of residential treatment beds. They cut group home beds for foster care. The goal was to redirect money to intensive in-home and outpatient resources that would support children and families, but those services haven’t been built out.”

She described the community services as “paltry.” The result, she said, is a bottleneck. Kids can’t leave residential treatment facilities because there aren’t enough services they can access while living at home — and others are stuck in emergency departments because they can’t get into residential treatment facilities, she said.

“We have gotten ourselves in a place where we have a crisis on our hands,” she said.

Meanwhile, the state also underwent changes in how it delivers specialized services to families. Maryland had used federal grants and state funds to pay two contractors, Maryland Choices and WrapAround Maryland on the Eastern Shore, to coordinate care for about 400 children with intensive needs such as autism and developmental disabilities or foster children with acute trauma and other disorders. The flexible system allowed families to get services tailored to what their child needed.

With “wraparound” care, a child’s network of caregivers would meet regularly to discuss what a family needed to keep them thriving at home. Solutions might include art or animal therapy, one-on-one support in school or respite services for exhausted caregivers.

Maryland Choices put the family at the center, said Ayesha Holmes, the organization’s former top executive. It apportioned $30,000 per child, which could be distributed on a case-by-case basis. If one family needed more services than another, the funds were flexible enough to roll over into another person’s account.

“It puts the family in the driver’s seat and allows them to say, ‘This doesn’t work.’ That was the key to the success. It wasn’t shoving anything down someone’s throat,” Holmes said.

While the cost per child was high, it was less expensive than placing children in residential treatment, she added. ”On average, about 93% of families were successfully able to avoid a return to residential care. That was unbelievably high.”

Experts involved in the practice said inpatient hospitalizations among children stayed relatively stagnant during this period, from about 2010 to 2015.

Then, starting in 2014, the three federal grants disappeared, and state officials rescinded the flex funds in favor of having more families receive services through Medicaid, which now serves only 30 to 35 of these kids a year.

Leclair hit hurdle after hurdle in her crusade to connect Patience with the help she needed. She said the Prince George’s County school district has fought her at every turn, at one point opposing a unanimous decision by Patience’s local care team that would have placed her in a state residential treatment center earlier.

She couldn’t understand why state officials played down her daughter’s needs. After the adoption, she quickly realized Patience had hyperactivity and a mood disorder that infringes on her ability to form bonds with others. At times, memories of an abusive childhood cause her to lash out due to post-traumatic stress.

In the five years since the adoption, Leclair has spent much of it screaming into the abyss. Patience had a grant for therapy while in foster care, but those dollars evaporated after the adoption was finalized. And because Patience had both Medicaid and private insurance, Leclair had limited options to access at-home aid.

“We have phenomenal health care facilities in our state, but for kids’ mental health, we are failed again and again and again by every single system,” Leclair told The Baltimore Banner last month. The day Patience returned from Utah, mother and daughter drove to Frostburg, where the teen has lived at a residential group home since September. Still, she has yet to receive the therapy she needs to return home.

Complicating the care of children such as Patience are the system’s silos. Several state agencies, all with different missions, can control aspects of a child’s care. During the O’Malley administration, the Governor’s Office of Children oversaw agency coordination. But that changed under Hogan. Several people cited the dissolution of that office — once its own agency but now part of the Governor’s Office of Crime Prevention, Youth and Victim Services — as evidence of the state’s flagging commitment to youth and families.

In addition, Keegan said, Hogan appointed leaders “who weren’t visionary leaders on how to make things better,” but more adept at “maintaining the status quo.”

“They’ve been checked out for eight years, and now this will all fall on the incoming administration, and they will walk away wiping their hands clean of anything,” Moran said.

‘They kept us out of this mess’

The state’s change in strategy — the severing of the contracts for wraparound services for 400 children in 2016 and the return of more than a dozen children from out of state in 2017 — was intended to produce cost savings.

The state also saved money in other ways, from not filling jobs in the health department to setting reimbursement rates for residential treatment so low that providers say they can’t break even.

Providers and advocates say the state is starving the system of cash that could be used to rapidly expand services, an assertion the state denies. The Hogan administration said it has added $30 million to the budget for crisis response teams, higher rates for providers and programming for providers who deal with these children.

Recently, state agencies say, they have been trying to add inpatient spots — both for long-term residential treatment and short-term respite care.

However, they have had little response from providers. The state issued a request for proposals that so far has produced only six more beds for youth at Maryland Salem’s Children Trust in Western Maryland — where Patience is living now — and four future beds at the Board of Child Care of the United Methodist Church in Baltimore.

And no provider responded to the state’s request for private providers to add dozens of new, short-term placements for “respite care,” a place for youths with severe behaviors to go instead of an emergency room when their families can no longer care for them.

Trivedi said the current rates being offered by the state don’t cover Sheppard Pratt’s cost of providing the service.

Catholic Charities also cannot afford to expand its care because the state’s reimbursement — along with the way it is structured — doesn’t cover the cost. Already, Keegan said, Catholic Charities’ donations must subsidize some of its programs. But, he said, “you can’t can’t expect charities to pay for child welfare. It has to be funded by the government.”

He acknowledged that some aspects of the continuum — particularly respite care — are expensive. Still, the state used to pay for it.

“We actually had high-intensity respite beds. And they existed. They were very expensive. But they kept us out of this mess,” Keegan said.

Advocates point out that while the state has never tried to count the number of children who need such intensive treatment, it is relatively small — in the hundreds rather than the tens of thousands. They contend that the state has a wealth of health care resources and a $2 billion budget surplus.

Last winter, the Hogan administration had a $100 million windfall when the federal government decided to increase the percentage of Medicaid expenses it would cover. The money that had been originally budgeted to pay for the state’s share of Medicaid reverted back into the general fund.

Critics say some of that $100 million could have been spent on providing more mental health services.

Franchot, who as a member of the state Board of Public Works has tried to severely limit the number of contracts that place youth in facilities outside the state, said the state had 60 children in out-of-state residential treatment facilities. It is down to 25 now, he said.

At his last meeting, Franchot cast a protest vote against four emergency contracts totaling about $415,000 to send children out of state, even though money had been spent. It is up to the state, he said, “to incentivize the existing institutions that are world-class and allow us to treat these kids in state.

“It is not a lack of money, it is a lack of political will to implement what is needed to take care of these severely disabled kids,” said Franchot, a Democrat.

Rising demand for mental health services

Even before the pandemic forced families to stay home, mental health complexities had become more common among children, according to data from the U.S. Centers for Disease Control and Prevention.

The rate of diagnoses for depression and anxiety among the 6-to-17-year-old age group rose from 2003 to 2012, according to the CDC. Among adolescents and teenagers 12 to 17 years old, more than 15% reported having a major bout with depression and 36.7% reported having persistent feelings of sadness and hopelessness, according to reporting from 2018 to 2019. And close to 20% seriously considered attempting suicide, according to the latest figures.

In Maryland, the number of children 17 and under going to an emergency department saying they wanted to commit suicide rose by 15% between 2018 and 2021, according to Behavioral Health Administration data.

The pandemic worsened already concerning trends.

For Patience, the public health crisis hurled her into a downward spiral. Leclair said that while the initial months at home passed with relative ease, Patience hit a wall by December 2020.

“She was isolated and afraid the new mom who loves her is going to die now,” Leclair said. Her behavior escalated in January, prompting Leclair to scramble for help.

From February until April 2021, Patience did not log on to join remote classes. With the help of a sympathetic principal, Leclair found a way for Patience to return to in-person classes full time by the end of that month. Leclair began to see some improvement in her daughter.

But by summer, things took another turn. Leclair took her to the University of Maryland Medical Center, where the girl received care for about a week. A few weeks later, she wound up at a private residential facility for about six weeks in Pennsylvania. And by mid-2022, after a Washington, D.C., hospital threatened to call Child Protective Services on Leclair for not bringing her daughter home after a roughly monthlong stay as she sought a placement, Patience was admitted to ViewPoint Center in Utah.

Unfortunately, Patience’s story is not uncommon, said Rachel Boro-Hernandez, director of pediatric social work at Johns Hopkins Hospital. With some children, it can take months to find a provider willing to open its doors to them; in one case, Boro-Hernandez said, a young Hopkins patient waited in the emergency room for eight months before space was found in another state.

The situation creates a strain on hospitals, she said; at Hopkins, 30% of the beds are not being used because staff have been diverted to help care for children who shouldn’t be there. “We’d have the capacity if we had the ability to get the kids in and out,” she said.

In a letter to Maryland Health Secretary Dennis Schrader, Democratic members of Maryland’s congressional delegation urged the Hogan administration to apply for new federal funding for specialty clinics called Certified Community Behavioral Health Centers. They provide comprehensive mental health and substance use treatment to anyone in need, including children.

The deadline to apply for grant funding expires Dec. 19, and the lawmakers cite a pressing need: Federal and state data show Maryland has the longest emergency-room wait times of any state, with behavioral health patients accounting for nearly 70% of all “ER boarding” days but only a quarter of admissions.

Lawmakers said the money could “give the next administration flexibility to take advantage of this remarkable opportunity to improve the lives of Marylanders experiencing serious mental health and substance use disorders.” The state has told advocates it does not intend to pursue the grants.

Dr. Lisa Burgess, the state’s deputy secretary for behavioral health, said the Hogan administration has been proactively monitoring and addressing the surge in mental health demand using what she referred to as the “three pillars”: “Someone to call, someone to respond, and somewhere to go.”

Starting this summer, people in distress can call 988 for mental health services to circumvent dialing law enforcement. Mobile crisis teams have been established to respond to some callers in distress. And the state is in the process of investing in more walk-in crisis centers. Providers can also now dial 211 to assess if there are any open placements.

Burgess said these steps should be enough to keep more children from requiring higher levels of care.

Boro-Hernandez and others disagree. None of these tools have been appropriately scaled, she said; for example, mobile crisis teams are not yet available for children, who will be met only by police officers.

“It is the state that controls the money and financial decisions, the policies regarding who they’re going to shelter and which facilities to open,” she said. “It speaks to a larger value in society about how we value children: look at education, welfare, our insurance system. These children with mental illness and low resources are not really valued.”

Baltimore Banner reporter Meredith Cohn contributed reporting.

hallie.miller@thebaltimorebanner.com

liz.bowie@thebaltimorebanner.com

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