Beyond the Stigma: Doubling the help for kids

State health officials expect to double the number of children with serious behavioral problems who get “wraparound” services such as peer support, in-home counseling and respite care, after the federal government approved a change in the state’s Medicaid plan.

The recent rules change will be a huge benefit for families eligible for FAST Forward, a community-based program that serves youngsters with serious behavioral health needs, according to Erica Ungarelli, director of the Bureau for Children’s Behavioral Health at the state’s Department of Health and Human Services. 

“The goal is to keep them in their own homes and keep them out of repeat hospitalizations, because that’s what these kids experience,” she said. They also are at risk for out-of home placement, she said.

Crystal Lutz of Gorham said FAST Forward has been a huge help for her family. Her 11-year-old son, Wyatt, has Tourette syndrome, ADHD, oppositional defiant disorder and other behavioral issues. He’s also 5-foot-6 and weighs 175 pounds. 

“He’s a little bit of a handful,” his mom said.

Wyatt’s behavioral issues started worsening when he was in third grade, Lutz said. “I’ve always worked with kids with disabilities, and I couldn’t even handle my own son,” she said. “That was the hard part for me.”

At one point, she worried that she’d have to find a residential placement for Wyatt. Instead, she found FAST Forward.

The program is family-driven, with parents and children identifying their needs, strengths, priorities and strategies, Ungarelli said.

They also choose a care team, including “people that are important in their lives and their child’s life and their child’s treatment,” she said. That could mean a counselor, but it could also be a trusted teacher or coach.

Until now, Ungarelli said, limited funds meant only 60 children covered by Medicaid could participate. That’s because Medicaid pays for clinical care but services such as peer support counselors and respite care had to be paid for with state funds.

But on July 12, the federal Centers for Medicare and Medicaid Services approved an amendment to the state’s Medicaid plan that allows the public insurance program to cover the kind of non-clinical services that supporters say make FAST Forward successful. Since Medicaid relies on a 50-50 state/federal match, Ungarelli said, that means “we’re essentially able to double the capacity” of the program.

A system of care

For the Lutz family, it has given them support they need to find their way. “I’ve never seen a program like this,” Lutz said. “I like how they come to the house and we can sit here and just talk.”Modeled on a program in Milwaukee, Wis., it grew out of a federal grant the state received in 2012 to develop what experts call a “system of care” for kids with behavioral health issues. When the grant ended in 2016, DHHS contracted with NFI North in Contoocook to continue the program.

Paul Dann, NFI North’s executive director, said the state is moving to a more proactive approach in addressing behavioral health issues.“I think in our culture, typically we wait until there’s a problem and then we respond,” he said. “This helps us in a more proactive way ... to help these families earlier on.”

Karen Cusano, assistant executive director of NFI North, said in the old model, care providers told families what they need. In FAST Forward, the care coordinator asks the family to identify their own needs and, even more importantly, strengths. “And that builds hope, and that gives them the will to carry on and do the hard work,” Cusano said.

Ungarelli said the kind of support offered through FAST Forward are “critically important” for the families they serve. It’s not uncommon for these children to end up in psychiatric hospitals “multiple” times a year, she said. “That’s a real disruption, in the family, in the child’s connection to the community and to school,” she said.

Seeing success

To qualify for the program, kids must be 6 or older; eligible for Medicaid; having difficulty in day-to-day life due to a serious emotional disturbance; and at risk of out-of-home placement in a residential treatment facility, psychiatric hospital or juvenile justice facility.

Kathleen Abate, a care coordinator for FAST Forward said the program is seeing real, tangible success. One young teen in Cheshire County had been going to the emergency department every two weeks for evaluation and, sometimes, hospitalization. Since getting into FAST Forward, she said, “That young man has not seen an emergency room in over a year.” “That’s success.”

Lutz said she’s seen a “huge change” in her son since they started working with their FAST Forward team. He’s calmer, doing well at the Enriched Learning Center where he goes to school, and learning to express his emotions, she said.

“If something is bothering him, he’ll come out and tell us. He uses his words now instead of his actions and his hands,” she said.The next step, Ungarelli said, is to explore expanding the program to the non-Medicaid population. She’s planning to meet with private insurance companies this fall to start that conversation.

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