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My name is Rafael Semansky. I am the senior policy analyst at the Judge David L. Bazelon Center for Mental Health Law. The Bazelon Center advocates for the rights of adults and children with mental disabilities. Mental health disorders affect a large number of children in New York state. In 1995, the Substance Abuse and Mental Health Services Administration estimates that between 150,000 and 278,00 children in New York had a severe emotional disturbance. When these conditions are not treated, they negatively affect family stability, school performance, and social development. Fortunately, there are effective mental health treatments for these conditions. Federal law entitles any of the 1.3 million children enrolled in the state's Medicaid program to all medically necessary services covered under Medicaid. Over the last ten years, New York, like many other states, has expanded the array of child mental health services defined in its state Medicaid plan. The Bazelon Center has reviewed plans from all states. New York has, on paper, one of the most comprehensive benefit packages for children's mental health services. But listing these services in the state plan does not mean that families can get them. Last year, the Bazelon Center conducted focus groups in New York and in Oregon to learn what this expansion means on the ground—whether it has increased the availability of services to children on Medicaid. We conducted groups in New York City and in Onandaga and Schoharie counties. Thirty-five New York families with 40 children on Medicaid told us about their experiences seeking mental health services. Today we join New York families and advocates to announce findings from these focus groups. Unfortunately, we found that many families whose children have serious mental disorders and behavioral problems reported that they were unable to find the services their children needed. Parents reported that some innovative programs—notably the state's use of a Medicaid waiver to provide home- and community-based services, the Coordinated Children's Services Initiative (CCSI) and other programs like the Friends program in New York City—helped their children access services. But these programs are available to only a fraction of the families across the state. In general, parents reported gaping holes in the state's safety net for children with serious mental disorders. Most parents we spoke with reported great difficulties and experienced long delays in obtaining almost all types of mental health services covered by New York's Medicaid plan—including diagnosis, therapy, case management and intensive services, such as day treatment and home-based services. The families we spoke with had a hard time getting any services at all, and when they did, they often felt that the services provided were inadequate. Without early and effective intervention, children's conditions worsen, making more intensive— and therefore more expensive— mental health services necessary. In the long run, this approach saves no dollars and makes no sense. Families reported that many of the children in the most dire need of services go without because access to the most intensive services is also the most limited. As a result, parents shoulder the burden of providing care for children when their conditions may require more intensive residential treatment and in-home services. Some parents reported that they had been forced to call the police
or child welfare to shorten the wait for intensive services, reluctantly
turning over their child to the juvenile justice system or relinquishing
custody to the state. Families in the focus groups cited several barriers to obtaining needed services: First, a failure by providers to identify and assess children early; An overemphasis on basic medical and clinical treatment;
To address these barriers, we urge the state to increase the number of families benefitting from Medicaid's waiver for home-and community-based services. This approach expands intensive community-based children's mental health services. Yet today only 610 waiver slots exist statewide. Nine hundred and seven children were served last year. The state should also invest in intensive community rehabilitation services. Parents expressed a need for more in-home service providers, day treatment programs, and after-school and summer programs. New York State must also develop a better crisis-response system. Most hospital emergency rooms cannot handle psychiatric emergencies. Specialized mobile crisis teams and emergency room staff could reduce the need for expensive inpatient, residential care. Finally, the state must also enhance collaborations between the many public agencies that serve children. This can be accomplished, at least in part, by increasing support for the Coordinated Children's Services Initiative. Parents often reported that their children fell between the cracks of multiple agencies. Programs such as CCSI can help state agencies direct scarce mental health services in a coordinated manner. Implementing these recommendations may be difficult, but the desperation expressed by so many in the focus groups underscores the urgent need for change. This report is a snapshot of what parents across the state are experiencing. Based on these reports — and the tragic stories that New York family advocates hear everyday — the state needs to take a long, hard look at real access to mental health services for the state's Medicaid-eligible children. Thank you. ###The Bazelon Center for Mental Health Law is the nation’s leading legal advocate for the rights of people with mental disabilities. |
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