Years After NY Medicaid Overhaul, Kids’ Access to Mental Health Care Still in Crisis: Report

The state’s Medicaid redesign under former Gov. Andrew Cuomo included a plan to reform the program’s patchwork, under-resourced mental health care system for children. But nearly a decade later, advocates and experts say access to youth behavioral health services in New York has barely improved, and may have gotten worse. 

Lea la versión en español aquí.

In 2011, former Gov. Andrew Cuomo ordered an overhaul of the state’s Medicaid system, including reforming coverage for the approximately 2 million kids across New York enrolled in Children’s Medicaid.

Core to the Children’s Medicaid Redesign Plan was expanding and streamlining youth behavioral health services—which are used by approximately 10 percent of the state’s children on Medicaid each year—and which were previously provided through a patchwork of waiver programs that advocates and customers said led to fragmented and substandard care.

The redesign, which also included shifting children’s mental health and substance use disorder services into managed care, aimed to offer a wider array of treatment options to more Medicaid enrollees under age 21. The goal, officials said, was to expand the state’s network of “community-based recovery-oriented services and supports” so kids could access care closer to their homes and earlier on, to avoid costly emergency room and inpatient treatment and prevent more complex behavioral health issues later in life.

But nearly a decade after the announcement of the redesign, advocates and experts say access to youth behavioral health services in New York has not substantially improved, and may have gotten worse. While the state has indeed reduced its inpatient capacity—the average number of Medicaid-enrolled youth staying daily in state psychiatric beds and residential treatment facilities both dropped by more than 20 percent between 2012 and 2019—it has failed to adequately invest in the community-based care that was promised to help prevent the need for those more expensive, intensive services, according to a recent report by The New School’s Center for New York City Affairs (CNYCA).

This can mean months-long wait times for young people in need of care, as they struggle to secure a therapist or treatment program spot in a system that advocates say has long suffered from a shortage of providers and decades of under-investment. Lacking adequate outpatient options, some youth in crisis end up cycling through emergency room and hospital visits; In 2019, more than a third of young New Yorkers hospitalized for psychiatric care were back in the ER again within three months, the CNYCA report found—one of the main issues the redesign aimed to prevent.

“I think for most families, they would say nothing has changed. It’s always been difficult, it still is difficult, and the services that they need are not there,” CNYCA Director Kristin Morse told City Limits. “The actual plan is a good one. It should work. It’s just never been funded.”

That lack of state investment in community-based treatment options is evidenced by just how few New York children on Medicaid are actually receiving them, the center says. After delaying the promised expansion of those services for several years, the state began rolling out two new packages of behavioral health services in 2019. They include a slate of 18 different Home and Community Based Services (HCBS) intended for kids at risk of hospitalization or institutionalized care, and another package of six Children and Family Treatment and Support Services (CFTSS) for young people with social, emotional, behavioral health and substance use issues.

But just a fraction of the children and teens on Medicaid who are eligible for such services are getting them. Of the approximately 200,000 youth the state estimates as eligible for CFTSS, just over 8,000 enrollees were treated through one of those programs in October of 2020 (the most recent month for which data was available at the time of CNYCA’s report, its authors say). Between the start of 2019 and April of this year, a little more than 20,000 kids have been served through CFTSS, just 10 percent of those eligible, the report found.

A similar gap is seen for those being treated through HCBS programs, which includes things like family/caregiver support, social and living skills help for youth with developmental conditions and palliative care for young people with life-threatening illnesses. Of the 65,000 Medicaid enrollees estimated as eligible for HCBS, just over 2,000 in a given month are using them, CNYCA says.

“We’re now a couple of years into this, and it seems very clear that the promise of Medicaid redesign has not been fulfilled,” said Alice Bufkin, director of policy for child and adolescent health at the Citizens’ Committee for Children of New York (CCC is a City Limits funder). “And what that means, if we stopped using jargon-y words, is that kids desperately need services, and they’re not getting them.”

The slow uptick in the number of kids enrolled in these programs can be attributed to a number of factors, she says, including the state’s initial delay in launching the services as well as underfunding their rollout (the state first estimated that full implementation of the Children’s Medicaid Redesign Plan would require close to $64 million, but only $15 million has been funded for the transition so far, according to CCC).

Reimbursement rates for the nonprofit providers selected to offer the services are also too low, advocates argue, making it difficult for those organizations to keep programs fully staffed.

It’s not, however, due to a lack of need: approximately 1 of every 5 children in the state has an emotional, behavioral or developmental condition, while suicide is the second-leading cause of death for New Yorkers aged 15 to 19. The COVID-19 pandemic has only exacerbated these issues, advocates say, as youth continue to deal with the isolation and stress of the pandemic. Thousands of children across the state have lost a parent to the coronavirus.

“[The pandemic] led to a spike in the extent of children’s mental and emotional needs, at the same time that accessing services became much harder,” Bufkin said. “We see that not only in the data at the national and the state level, but we see that anecdotally from our partners on the ground who are saying, ‘We have waiting lists, we have children waiting for hospital beds, and they can’t get in.’”

For its part, New York health officials say Medicaid redesign has allowed it to reinvest approximately $100 million each year—savings from the inpatient beds it has closed across the state as part of the overhaul—into community-based mental health services for all ages. About 29 percent of those annual reinvestment funds are specifically put towards services for children and teens, and represents just a small portion of the state’s overall investments in behavioral health, according to the New York State Office of Mental Health (OMH).

“Providing the best possible services and treatment options for New York’s children and families are among OMH’s highest priorities, which is clearly demonstrated by the resources and investments made each year into children’s services,” OMH spokesman James Plastiras told City Limits in a statement.

The number of kids served in outpatient mental health clinics across the state has indeed increased since 2012, CNYCA’s report notes. But those facilities aren’t always the right fit for young people with more complex needs. In addition to the shrinking number of youth inpatient psychiatric beds in recent years, slots in specialty outpatient programs that offer more intensive services for young people dropped by 20 percent between 2014 and 2019.

“We want to avoid the need to put children in more intensive services. But if you’re going to shut those down, and then not reinvest it in something that’s working and replacing it, you have to address that fact,” Bufkin said.

While it’s only been three years since the redesign’s new services really began being offered to Medicaid recipients, families who need care don’t have the luxury of waiting for real improvements to take root, she adds. “We’re talking about children, who don’t have three or five years to figure out if these changes worked.”

Both she and Morse say mental health access for Medicaid recipients is just one piece of a broader, systemwide shortage of behavioral health care, particularly for children. Youth with commercial insurance coverage also face challenges in finding a provider and getting needed care.

“Kids are always the afterthought,” said Morse. “We don’t have a mental health care system that works for kids and adolescents, or, frankly, adults for that matter.”

Advocates who work in the field are pushing for the state to make more meaningful investments into the system, citing nearly $300 million in federal stimulus and American Rescue Plan funding allocated to New York for mental health and addiction services. That money, they say, could be used to build more school-based clinics or fund programs that Medicaid recipients aren’t currently eligible for.

Stakeholders are also calling for the state to increase the portion of its overall mental health funding that goes towards youth. New Yorkers under 18 make up approximately 20 percent of those served by the state’s public mental health system, while about 25 percent of New York’s behavioral health resources are allocated for children’s services, according to OMH.

That should be raised to at least half of those state funds, advocates say, to reach more New Yorkers before their mental health needs reach crisis levels.

“So that we stop the cycle of children not having their needs met when they’re young, and then becoming adults who still don’t have adequate access to services,” Bufkin said. “Maybe if interventions had happened younger, they could have gotten the support they needed to thrive as adults.”

City Limits’ series on behavioral health and NYC’s children is supported by the Citizens’ Committee for Children of New York. City Limits is solely responsible for the content and editorial direction.