1. Improving Transition Services Through Integrated Services and Research for Youth with Chronic Health Conditions Presented by Richard N. Roberts, Ph.D. Early Intervention Research Institute Utah State University Logan, UT 84322-6580 (435) 797-1172 richard.roberts@usu.edu Paper presented at the Invitational Transition Conference 2008: Building an Interdisciplinary Research Agenda to Enhance Quality of Life and Transition to Adulthood for Youth with Chronic Health Conditions Minneapolis, MN January 18, 2008

2. Invitational Transition Conference 2008 Building an Interdisciplinary Research Agenda to Enhance Quality of Life and Transition to Adulthood for Youth with Chronic Health Conditions January 18, 2008 Speaker Richard N. Roberts, PhD Professor, Psychology Director, Early Intervention Research Institute and National Center for Special Health Care Needs (Champions, Inc.) Utah State University Sponsors: University of Minnesota School of Nursing, Center for Children with Special Healthcare Needs Minnesota Department of Health – Minnesota Children with Special Health Needs Co-sponsors: Department of Pediatrics, University of Minnesota Medical School Maternal & Child Health, University of Minnesota School of Public Health The Institute on Community Integration, University of MN College of Education and Human Development

3. What is Transition All About? Universal rite of passage in becoming more independent and self reliant: Universal rite of passage in becoming more independent and self reliant: Puberty Puberty Self reliance-health, social, employment Self reliance-health, social, employment Autonomy Autonomy Different circles of friends and contacts Different circles of friends and contacts Finding new sources of social and instrumental support Finding new sources of social and instrumental support

4. It’s All About The System!

5. What is the mandate that makes this a high priority? Survival rate has increased to 90% - particularly in certain diagnoses Survival rate has increased to 90% - particularly in certain diagnoses Legislation frames the mandate for us, for example: Legislation frames the mandate for us, for example: New Freedom Initiative-promotes full access to community life for persons with disabilities New Freedom Initiative-promotes full access to community life for persons with disabilities Delivering on the promise HHS report Delivering on the promise HHS report

6. What Should Transition Look Like? Like everything else- reflect the needs of the consumer/citizen Like everything else- reflect the needs of the consumer/citizen Family centered, youth centered, non punitive in the transition (waivers, etc.) Family centered, youth centered, non punitive in the transition (waivers, etc.) State Title V performance measures developed through PAR process State Title V performance measures developed through PAR process Strong youth involvement speaking their own voice. Strong youth involvement speaking their own voice.

8. Transition Incentive Awards Findings Eleven statewide projects funded under Champions for Progress. Eleven statewide projects funded under Champions for Progress. Findings: 1.Transition is a process, not an event 2.CYSHCN have little or no experience managing their own health care, 3.Disconnect between Youth and adult expectations of education and employment opportunities, 4.Youth with SHCN want to be considered like any young adult without special health care needs; 5.Families tend to be unaware of programs and resources that could help; 6.Pediatric and adult health care professionals have little experience to communicate and collaborate and do not know the other system parts 7.Systems level coordination between the health care system, education, rehabilitation or insurance systems is very problematic. 8.Moving from entitlement to eligibility ( ICD-9 codes /health to voc rehab)

9. Champions for Progress Strengthening stakeholder partnerships Stakeholders represent target population (client and system) Buy in and power sharing by partners Allow opportunity for co-learning and capacity building Developing coordinated plans Clear vision based on service needs identified by stakeholders Specific operational tasks form plan Implementing community-based service system Service delivery plan endorsed by stakeholders Measuring and monitoring progress

10. Where’s the Policy and Practice Path? Our practice/incentive award/literature review suggests going back to square one with infrastructure building: Team members: PAR in action -working with others; documented effective programs; infrastructure; consumers integral to the team Relationships: shared vision and power; diversity valued; good relationships with other players Organizations: leadership; formalized procedures; effective communication; sufficient resources; CQI process

11. PAR as the Framework Participatory Action Research (PAR) is an approach that encourages researchers and those who will benefit from the research (families, providers, policymakers) to work together as full partners in all phases of the research.

12. Continuous Quality Improvement Model Phase I Develop Community Focus/Agree Upon Outcomes Phase V Report Accomplishments/ agreed upon outcomes Phase II Collect Baseline Data Phase III Action Plan Phase IV Measure Change (Recursive loops suggest the dynamic rather than linear nature of the plan)

13. Vertical and Horizontal Integration Model Federal State Family Primary Care Health Dept. Mental Health Social Services School District (Part B) Community

14. Coalition Building See the community as the unit – not individual programs Aim for ecologically valid innovative programs that meet the needs of the community, Recognize the integration and balance of knowledge generation and intervention ( iterative process) Build on the community strengths and resources Focused objectives, realistic goals Address locally relevant public health problems and multi-determinants of health Equally involve partners in every facet of research process (PAR) Allow opportunity for co-learning and capacity building systems development using cyclical and iterative process Disseminate findings or outcomes to all partners Engage in project as a long-term process

15. Partners/stakeholders Shared goals/mission statement Connections b/w task force and state agencies Community task force governance and authority Service delivery system/model Financing and budgeting Information systems/data management No Connection Information Sharing and Communication Cooperation and Coordination CollaborationConsolidationIntegration Informal Formal Intensity of Integration Continuum P P P P P P Key: P = Prior to task force P Pocatello Service Integration Matrix Service Integration Goal: Coordination of Early Intervention with the Medical Home Target Population: 0-5 Part C/Part B in CDS or CSHCN Definition Children and Families Outcomes and Accountability: Referrals from local physicians to early intervention: 16% in 1999; 1999 1999 = 1999 SI level increased to 26% in 2001. I I I I = Ideal level in 1999 I I I I 2001 2001 = 2001 SI level 2001

16. Individual/System Outcomes ? Improved or sustained health status over time Getting the right services and supports at the right time Inclusive settings for health/care/recreation/ education/having friends and supports

17. What’s Out There for Assistance? HRTW Center HRTW Center A very committed constituency who are critical to the process A very committed constituency who are critical to the process Tools and supports options on all the web pages of the national centers Tools and supports options on all the web pages of the national centers A creative and engaged group of people in Minnesota A creative and engaged group of people in Minnesota New legislation and/or grants to support change New legislation and/or grants to support change