PAVING THE WAY: Meeting transition needs of young people with developmental disabilities and serious mental health conditions Mandy Davis Pauline Jivanjee Nancy Koroloff CONTENTS PUBLISHER This publication was produced by the Transitions to Independence Project at the Research and Train- ing Center on Family Support and Executive Summary ............................................................5 Children’s Mental Health, Regional Research Institute, Portland State Background .........................................................................7 University. Definitions ...............................................................8 Prevalence of Dual Disabilities ................................9 P.O. Box 751 Portland, OR 97207-0751 Challenges .............................................................10 Phone: 503-725-4040 Recommended Approaches ..................................13 Website: www.rtc.pdx.edu Research Approach ...........................................................14 Phase I ...................................................................14 Phase II ..................................................................15 FUNDERS Program Summaries .........................................................17 Project SEARCH Funds to support this activity come Cincinnati Children’s Hospital ................................17 from The Child, Adolescent and Family Branch, Center for Mental The Intercept Center .............................................23 Health Services, Substance Abuse Serendipity’s Transition to Mental Health Services Adminis- Independence program .........................................27 tration, U.S. Department of Health ChristieCare Mosaic Program ................................31 and Human Services; and from The National Institute on Disability and Francis Foundation ................................................36 Rehabilitation Research, U.S. De- Trillium Family Services .........................................40 partment of Education (Grant No. Vermont Crisis Intervention Network ...................44 H133B40038). The Center for START Services ...............................48 Best Practice Summaries ..................................................53 Peer Support .........................................................53 Youth Driven Resource Mapping ...........................54 Transition to Independence (TIP) Model ...............55 Community Connections .......................................56 SUGGESTED CITATION Culturally Specific Services ....................................58 Davis, M., Jivanjee, P., & Koroloff, Discussion .........................................................................59 N. (2010). Paving the way: Meet- Conclusion .........................................................................62 ing transition needs of young peo- ple with developmental disabilities References.........................................................................66 and serious mental health condi- Appendix A: Interview Protocol .......................................69 tions. Portland, OR: Research and Appendix B: Selected Resources ......................................73 Training Center on Family Support and Children’s Mental Health. EXECUTIVE SUMMARY outh and young adults aged 16 to 24 who team first conducted telephone interviews with have dual diagnoses of a serious mental 12 policy-level experts, researchers, and program Y health condition and a developmental dis- directors to identify the challenges serving youth ability experience significant challenges as they with dual diagnoses, the services provided, and transition to adulthood. Services to support these respondents’ recommendations for improving young people are inadequate and they are com- services. Review of the literature and analysis of monly served inappropriately either because they interview notes guided the development of plans have been misdiagnosed or because the services for phase 2 in which the team used the “ideal” they receive target only the developmental dis- program characteristics identified by a workgroup ability or only the mental health condition. Young of the National Association of State Mental Health people with both disabilities are considered par- Program Directors (2004) as criteria for examining ticularly vulnerable because they are also transi- programs identified through an expert nomination tioning from receiving services in the child and ad- process. Fourteen semi-structured telephone in- olescent mental health system and the education terviews were conducted with program directors, system into adult serving systems. For many young providers, and experts who serve youth and young people, the inadequate service system results in adults with dual diagnoses. inappropriate hospitalizations, restricted living The report that follows includes eight case situations, homelessness, interrupted education, and incarceration. studies of programs providing innovative services Responding to the identified lack of informa- and six short descriptions of specific best practic- tion about effective interventions with young es. The programs featured in the report include a people with dual diagnoses, the research team school-based transition program; outpatient men- developed an exploratory qualitative study. The tal health services; an employment preparation purpose of the study was to identify and describe program; programs supporting youth transitions best practices for transition to adulthood servic- from restrictive environments to community set- es for young people aged 16 to 24 who are du- tings; system-level crisis prevention and interven- ally eligible for mental health and developmental tion planning; and system level planning and con- disability services. In a two phase process, the sultation. 5 Programs featured in this report are: health challenges a few of whom also have a developmental disability. • Project SEARCH, Cincinnati, Ohio • Young people with dual diagnoses are char- • Intercept Program, Aurora Mental Health acterized by a high rate of traumatization. Center, Aurora, Colorado • There is a beginning understanding that in- • Transition to Independence Program, Seren- dividuals with developmental disabilities can dipity Center, Portland, Oregon benefit from mental health therapies that • Mosaic Program, ChristieCare, Lake Oswego, have been modified to accommodate a de- Oregon velopmental disability. • The Francis Foundation, Middlesex, Vermont • There is a growing recognition of the need • Young Adult Program, Trilllium Family Ser- for staff working with young people with dual vices, Albany, Oregon diagnoses to be cross-trained in the fields of • Vermont Crisis Intervention Network, More- both mental health and developmental dis- town, Vermont abilities. • Systemic, Therapeutic, Assessment, Respite • While there are major differences in the phi- and Treatment Services (START), Concord, losophies and treatment approaches of the New Hampshire. mental health and developmental disabili- ties service systems, there are communities Discussion of the key features of these pro- where effective collaborations have been- de grams and of the related literature leads to a num- veloped. ber of conclusions: This study identified several innovative pro- • There is some literature on the needs and grams that are being delivered on a small scale in challenges of young people with dual diag- local areas or across a single state. Few programs noses. focus specifically on transition into independent • There are few programs designed specifi- adulthood. In general the picture for young people cally for this population. Programs serving with dual diagnoses is bleak and there is a need young people with dual diagnoses fall into to focus planning and resources on meeting their two groups (a) those designed for individu- needs effectively. Documentation of innovative als with dual diagnoses, some of them in the programs and evaluation of their effectiveness will young adult age range, and (b) those serv- help to develop a research base for best practices ing young people in transition with mental with this population. 6 BACKGROUND outh aged 16 to 24 with serious mental The difficulties facing transitioning youth with health conditions often experience chal- serious mental health conditions are compounded Y lenges as they assume adult roles and when they also have a developmental disability. transition into adulthood (Armstrong, Dedrick, & The oppression and exclusion imposed on this pop- Greenbaum, 2003; Clark & Unruh, 2009; Vander ulation create more barriers and fewer opportuni- Stoep, Davis, & Collins, 2000). The long term out- ties for employment and independent living and comes for these youth have been poor and include increase the need for continued support in their higher rates of interrupted education, unemploy- adult years. While evaluating a local alternative ment, homelessness, involvement in criminal ac- school’s transition supports and services for youth tivities and ultimately in the justice system, un- who have both a serious mental health condition planned pregnancies, and the likelihood of suicide and a developmental disability we became inter- compared with their non-disabled peers (Blackor- ested in exploring the experiences, outcomes, and by & Wagner, 1996; Clark & Unruh, 2009; Collins, best practices for this particular sub-set of youth 2001; Levin-Epstein & Greenberg, 2003; McMillan, in transition, [those with an added developmental 2009; Vander Stoep, Davis,