The term “crisis” may be over-used, but sometimes it’s the only term that captures the moment. Right now, Maine's behavioral health system for children is in crisis. At DRM we know firsthand that young people with disabilities are languishing for days and months in emergency departments and hospitals. Families in Maine must contend daily with the failure of the service system to provide them and their loved ones desperately needed crisis and supportive services.
DRM has been pushing Maine DHHS to expand access to services for Maine families. We have outlined enormous frustrations with provider agencies that cherry pick clients, refusing services to some, while placing others on waitlists. We are convinced that Maine has the capacity to serve young people in the community and in their homes.
Unfortunately, the state’s response to these pressures has been a recently rolled-out proposal to develop two new inpatient institutions, to fill what is described as a gap in services for Maine children with disabilities. DRM is convinced that resorting to institutional care for our children, and denying them the home and community-based support they are entitled to, sets Maine on a path toward relying on bricks and mortar to somehow meet the unique and individualized needs of our youth. It’s not a solution we can be proud of, and it’s not a solution that is fair to kids, or effective.
Developing congregate, institutional remedies to the problems in our youth behavioral health system reflects backward-looking policy. It is an inappropriate and inefficient use of scarce public resources. Most troubling, it goes against 20 years of legal progress made on behalf of people with disabilities of all ages. In Olmstead v. L.C., a landmark civil rights case decided in 1999, the U.S. Supreme Court made clear that prioritizing public dollars to support institutions over community services was potentially discriminatory. Youth with serious disabilities – those deemed "at risk of institutionalization" - have a legal right to receive services in the most integrated settings possible, alongside peers with and without disabilities. Any policy solution that risks needlessly segregating our young people with disabilities runs counter to the ADA's integration mandate.
Research and experience demonstrate the folly of relying on institutions to do what only a comprehensive, community-based mental health system can properly do. We should learn lessons from other states instead of repeating their costly errors. For instance, a multi-state demonstration project funded by the Centers for Medicare and Medicaid (CMS) and the Substance Abuse and Mental Health Services Administration (SAMSHA) showed that community-based services can provide better outcomes at a lower cost than the type of institutional setting being contemplated by DHHS.
The Psychiatric Residential Treatment Facility (PRTF) Demonstration Project revealed that home and community-based services reduced the cost of care and produced better outcomes for children. Home and community-based services provided to children cost 25% of what it would have cost to serve those children in PRTFs. Children also showed an increase in behavioral and emotional strengths, including the ability to form interpersonal relationships, develop a positive connection with family members, perform better at school, and demonstrate self-confidence.
Other major findings from the Demonstration Project on the benefits of diversion from PRTFs to treatment in the home and community included:
- Improved school attendance;
- Improved clinical and functional outcomes;
- More stable living situations for children;
- Reduced suicide attempts; and
- Decreased contacts with law enforcement and the juvenile justice system.
These are all outcomes that we want for Maine children receiving behavioral health services. The results are clear: high-quality home and community-based services produce better outcomes at far less cost than PRTFs.
It is far from assured that the existing services in Maine are being provided in a manner that is effective by cost and outcome. Spending scarce resources to build new facilities, in the name of addressing a “missing level of care” in a system that includes approximately 100 inpatient psychiatric beds and approximately 300 residential beds statewide, raises serious questions about the coherence of our approach. We risk developing, in a piecemeal fashion, a service system weighted toward institutional care at the expense of community services. That is not a system that reflects what we want or what is best for our children.
Currently, there are many children on waiting lists for home and community-based treatment, a number of them waiting longer than the 180-day limit set out in federal law. At the same time, residential providers have unused capacity. They have available beds to serve children, but are unable to hire staff, so children wait for residential services as well. Maine desperately needs a plan to achieve timely access to home and community based treatment, the far less expensive and far less restrictive services that can keep kids in their homes.
According to the most recent publicly available data from FY2013, Maine spent $195 million on Community Based programs. A complicated and complex suite of services as the children’s behavioral health system should have a strategic plan with outcome measures and a well-developed quality improvement program. The most recent Strategic Plan for children’s behavioral health services was delivered to the legislature in 1997. Clearly, more thoughtful planning is needed.
The cost of building the proposed new institutions will be high. Attracting and keeping qualified staff will be expensive as well, because the educational requirements of PRTF staff will be higher than for existing direct care workers. In order to pay the staff higher wages, DHHS will need to develop new and higher rates. This will exacerbate the existing workforce shortage within home and community-based services and residential services because workers will be drawn to the higher pay. With fewer staff working in home and community-based services and the existing residential services, it will become even harder to discharge youth from residential facilities and hospitals, and waitlists will grow.
DRM believes that Maine’s behavioral health system for children requires a complete review and overhaul, placing priority on what research tells us is healthiest and most effective for children and families – research-based community services implemented with fidelity. We strongly recommend that DHHS hire an expert to comprehensively assess children’s behavioral health services and help Maine develop an effective and smart plan to fix this system. We can demonstrate a commitment to our young people by developing a system that both honors their rights and provides for their most pressing needs.
If you have any questions or want more information, contact Peter Rice or Katrina Ringrose at DRM at 626.2774 or 800.452.1948.
 Joint CMS and SAMSHA Informational Bulletin, Coverage of Behavioral Health Services for Children, Youth, and Young Adults with Significant Mental Health Conditions, May 7, 2013; available at https://www.medicaid.gov/federal-policy-guidance/downloads/cib-05-07-2103.pdf