by Abigail Kramer

House Republicans' first big effort to get rid of Obamacare has died a noisy death (at least for now). The implications for New York are big: Had the proposed “repeal and replace” American Health Care Act become law, State officials estimate that more than a million New York residents would have faced a significant loss of health care, and that the State, its counties, and hospitals would have taken a cumulative hit of more than $4.5 billion over four years.

Even if Republicans don’t manage to resurrect their most recent bill, however, there remain many opportunities for the Trump administration to quietly strangle Obama-era health care reforms.

Under imminent threat in New York: a State plan to fix overburdened, underfunded services for children with mental health and substance abuse problems.

Each year, approximately 200,000 New Yorkers under age 18 on Medicaid use so-called “behavioral health” services, according to an analysis by the Medicaid Institute. The total cost to the State is approximately $255 million, in addition to funds paid by localities.

Many of the providers who offer those services, however, have operated in a state of near-financial crisis for years—largely due to limitations set by insurance. Most private plans offer skimpy mental health and substance abuse coverage, at best. And Medicaid, which has traditionally provided better behavioral health benefits, has successively reduced reimbursement rates over the past several years.

The result is a chronic shortage of programs and specialists, especially in pediatric settings. Clinics are often overwhelmed, and sick kids may sit on waitlists for months. Depending on where a child lives, it can take half a school year to get into a pediatric therapy program, and even longer to see a child psychiatrist.

The consequences can be severe, says Kristin Woodlock, a former acting commissioner of the New York State Office of Mental Health (OMH) who helped write the plan to redesign children's services. “Kids that encounter trauma or mental health issues can very quickly get off track. Maybe they aren’t able to pay attention in school, so they fall behind. There are academic and social consequences that can channel them into the special education pipeline, or put them on a pathway toward the juvenile justice system.”

When Governor Andrew Cuomo’s administration launched its project to redesign the state's Medicaid program in 2011, one of the goals was to expand and modernize the children's behavioral health system, pushing it to catch up with research on what works for hard-to-treat kids.

The children’s redesign plan took five years to develop, during which time its creators wrangled unprecedented consensus among providers, advocates and State and Federal officials about what a children's behavioral health system should, ideally, look like. Under the final version, released in 2016, providers would be allowed to bill Medicaid for a newly flexible range of services, designed to meet the particular needs of kids—rather than forcing them into replicas of models created for adults. For example, a therapist might work with an anxious teenager on social skills at her school, where she needs them, rather than expecting her to sit and talk in an office.

The plan would also drastically expand eligibility for services like respite care and crisis intervention, which are currently reserved for kids at imminent risk of being sent to institutional care. The goal, says Donna Bradbury, an associate commissioner at OMH and co-chair of the working group in charge of the children's Medicaid plan, is to "catch kids on the way up."

BY JANUARY OF THIS YEAR, when the Trump administration took over Washington, one of the few pieces missing from New York's children's plan was final approval from the federal Centers for Medicare and Medicaid Services (CMS)—a step previously assumed to be a sure thing. The State was so confident of approval, in fact, that it had already released a call for providers to apply for designation to offer the newly expanded services.

Now, State officials say they have no clarity about whether or when CMS will move forward. Late last month, the State OMH put the designation process on indefinite hold. "New York State remains committed to the Children's Medicaid Redesign," an OMH representative wrote in an email to a listserv dedicated to the children's reform plan. However, implementation would depend "on the timing of approvals and the review of incoming Federal Administration priorities and processes."

Advocates for kids fear that, in the meantime, hard-won support for fixing the system will evaporate.

Part of the challenge is that, unlike most of the State's Medicaid reform measures, the children's plan doesn't offer the prospect of immediate cost savings. Even among the sickest and hardest to reach adults, for example, investments in primary care can lead to reasonably quick savings in more expensive events like emergency room visits and hospital admissions.

With children's behavioral health, on the other hand, "there was always acknowledgement that there needed to be investment of new resources, not savings, because the system is so insufficient," says Andrea Smyth, the executive director of the NYS Coalition for Children's Behavioral Health and a member of the State's children's redesign workgroup.

The State doesn’t keep formal track of clinic wait times; nor does it publish system-wide data on the gap between the number of kids who need behavioral health services and the capacity of providers to serve them. But estimates used during the children’s planning process indicate just how dramatically State officials expect the system to grow.

One of the major elements of the expansion plan involves a subset of services called “Home and Community Based Services" (HCBS), currently reserved for a capped number of children already in urgent states of crisis. In 2014, according to an analysis by the State’s redesign subcommittee, fewer than 8,000 children received HCBS services across the state.

Under the redesign plan, eligibility for HCBS would be broadened to kids who meet medical assessment criteria—meaning they’re sick enough to need the help, but not necessarily in imminent danger of hospitalization. By 2022, the subcommittee projects that nearly 33,000 children will be enrolled in HCBS services—an increase of more than four times the 2014 numbers.

LAST YEAR, NEW YORK CITY launched a pilot program that offers insight into what better-funded services can look like. Through its Thrive NYC program, the City helps support seven early-childhood therapeutic centers, which offer specialized mental health programs for very young kids.

At the Harlem Child Development Center, operated by the Jewish Board of Family and Children's Services, therapists see kids up to 8 years old, many of whom exhibit early signs of emotional disturbance, or have witnessed extreme violence or been sexually abused. "Even very young children hold memories, or hold those experiences in their bodies," says Tonia Spence, the Jewish Board’s senior director of early childhood services.

One of the Center's patients is Lucas, a skinny 8-year-old who shares a crowded apartment with his mom, grandma, and little brother in Morningside Heights. Lucas's behavior problems started in daycare, says his mother, Maryam Christie, who works as a program director at a nursing home. "He was very sweet and outgoing, but he would get angry and hit his teacher and throw things."

By the time Lucas was in elementary school, he had out-of-control tantrums, running the halls and breaking things. Once, he tried to eat staples and was taken to the hospital after his principal called 911. At 6, a suicide threat landed him in a locked psychiatric ward overnight.

Christie brought Lucas to a string of therapists, who variously diagnosed him with ADHD, oppositional defiant disorder, and autism. But no one was really able to help, Christie says, until she found the Child Development Center, where she and Lucas meet every week with a therapist who's trained in specialized, evidence-based strategies for kids.

A basic premise of their sessions is that therapists can't actually do much to change a child's behavior in an office visit. Instead, the treatment must be primarily delivered through the people who shape Lucas's environment every day—most importantly, his mother. Each week, in addition to playing with toys and practicing good communication, Lucas, Christie, and the therapist discuss strategies to help Christie meet Lucas's needs and manage his behavior at home. They "help me to remember that this is a child with special needs and it takes a lot of patience to deal with those special needs without yelling,” Christie says.

The result is real improvement. Lucas is doing better in school and everyone in their home is less stressed, Christie says. “If I didn't have that help, I really don't know where we would be."

If the Medicaid redesign plan is approved, these kinds of specialized services might become available to many more families and children. If it isn't, advocates question whether the political will exists, in New York State, to push progress forward—especially in the face of other impending cuts to the State's social services budget.

"If the State wants to be courageous, it would recognize that getting kids on track and in treatment early is going to lead to savings in the long run," says Kristin Woodlock, the former OMH commissioner.

But, she says, "The normal government reaction would be to contract and restrict and delay."

Abigail Kramer is a staff editor at the Center for New York City Affairs. Improving health and human services for children and families is a long-standing priority at the Center. Special thanks to the Child Welfare Fund and the Sirus Fund for their generous support

Photo credit: Monica H.