Congressional Briefing Highlights Needs of Transition Age Youth with I/DD and Behavioral Health Conditions

On May 15, Representatives Grace Napolitano (D-CA) and John Katko (R-NY), co-chairs of the Congressional Mental Health Caucus, hosted a very important Hill briefing as part of Mental Health Awareness Month. This briefing addressed the decarceration of transition age youth with intellectual/developmental disabilities (I/DD) and mental disorders. Key presentations outlined the issue, its impact, including upon families, and needed solutions.

Napolitano opened with welcoming remarks. She decried the plight of many children and young adults with disabilities, and she emphasized the need to move toward community care. 

Jeff Cross, Benchmark Human Services, and I described the growth and seriousness of this problem. In recent years, growing numbers of transition age youth with I/DD and mental illness have become incarcerated in our county and city jails. Although no federal data are available on the extensiveness of this issue, the best field estimates are that these youth now represent between 5-10% of county and city jail populations. Some of these youth have complex health problems, including mental illness or substance use conditions. Most have fallen off the radar of local health and human services programs. Almost all have failed to make the transition from youth to adult services. County and city jails are not an appropriate care setting for them.

Susan Fowler, a retired dean of education at the University of Illinois and a parent, spoke eloquently about the extremely serious impact of this problem on her son, Chris, and on her own family. She noted that aging out of child services triggered a whole series of events for her son which culminated in jail and probation time.

Valerie Bradley, president emerita of the Human Services Research Institute in Boston, noted that many in this group are “falling through the cracks” and that waiting lists are “extremely long” for home and community-based services. She also described effects on care providers, and our inability to develop the work force needed to address this issue.

Sheriff Peter Koutoujian of Middlesex County, Massachusetts, described how this problem has impacted his local criminal justice programs. The sheriff also outlined a new initiative in his jail, People Achieving Change Together (PACT), which is altering the nature of the local corrections environment by moving from a punitive to a supportive culture. This program has already shown good success.

Efforts are taking shape to address the problem. A J. Breyer and Niki Ford, also of Benchmark Human Services, highlighted the importance of crisis intervention services to divert these youth into community services.

Mark Tassé, director of the University Center for Excellence in Developmental Disabilities, Nisonger Center, Ohio State University, proposed key service interventions to eliminate the youth-to-jail trajectory. These include prevention of incarceration through better outreach and care coordination, and better use of a full range of home and community-based services for transition age youth.

In closing, Jeff Cross and I summarized several essential steps that can be taken to ameliorate this problem. These would include creation of a Center for Excellence on Transition Age Youth with I/DD, better identification of I/DD in both community care and jail settings, better national data, and better community service coordination and care delivery. Extension of federal Medicaid payments to jail settings through the Tonko-Turner Bill (HR 3129) was identified as a key prerequisite.

Clearly, much work will be needed to develop an approach that reflects the America we seek for these transition age youth. We all are acutely aware that a key measure of our society is how we treat our elderly, our disabled, and our youth.

Sponsors of this Briefing included the National Association of County Behavioral Health and Developmental Disability Directors, the National Association for Rural Mental Health, the National Association of Counties, the National Sheriffs Association, the National Association of Social Workers, the National Association of State Directors of Developmental Disability Services, Benchmark Human Services, and Optum.