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State Efforts: Incentive Awards Findings

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Champions for Progress awarded incentive mini-grants to 34 states. Eleven of the states used these funds to support transition to adult life. A summary of these strategies -- and some keys to their success -- are presented below.

What strategies were used?

  1. Transition Advisory groups/Coalitions were formed.
    • Ad hoc groups were developed to guide the incentive award activities (AL, AZ, CO, NH, NM)
    • Long-term Title V advisory groups were established (DE, FL, HI, MI, NJ, OH)
    • Exclusive youth/young-adult groups were created (OH, MI, HI, FL)
    • Multiple-stakeholder groups were created (AL, CO, NH, NM, DE, HI, MI, NJ, OH)
  2. Written Needs Assessments were conducted to understand consumer priorities and to guide implementation plans.
    • Written surveys were administered to families (OH, MI, DE)
    • Surveys were administered to providers (NJ)
  3. Focus groups were conducted to determine transition challenges, needs, and priorities.
    • Focus groups with youth/young adults exclusively (DE, WI, NJ)
    • Focus groups with families exclusively (NJ)
    • Focus groups combining youth and families (MI, OH)
    • Focus groups combining youth, families and providers (CO, WY, NV)
  4. Training sessions and resource materials were developed & distributed statewide.
    • Self-directed workbooks were developed for youth and families (NV, CO, NJ)
    • Workshops and “train the trainer” manuals were developed (WI, AZ, NM)

What priorities were identified?

  • Transition is a process that begins early, not a one-time event.
  • CYSCHN need more experience, opportunities to manage their own health care.
  • Investigate youth versus parent expectations for the future, which are often different.
  • Easily-accessed educational and resource information for youth and families are needed.
  • Health care providers need to be better informed about the transition process and resources.
  • Self-advocacy skills that facilitate independence must be nurtured in youth.
  • Respect of the individual’s desired level of independence and life style is important.
  • Recognition that needing support does not mean "helpless."
  • Stronger communication among providers, especially pediatric and adult providers is needed.
  • Youth want help, but they also want to be in control.

What were the "keys to success?" across these efforts?

  • Key stakeholders were brought to the table from the very beginning.
  • Numerous voices of youth and young adults leaders with a variety of needed were involved.
  • A plan was developed that was based on stakeholder-identified needs.
  • Strategies were implemented in ways to fit the needs of communities and stakeholders.
  • Both short-term and long-term measures are needed to gauge success.
  • If at first you don’t succeed, try again – with the help of stakeholders.

How can these efforts be sustained?

  • Groups/coalitions institutionalized within Title V advisory infrastructure.
  • Training efforts can be continued by family organizations.
  • Family- and youth-friendly tools are easily accessed.
  • Provide dedicated Title V staff FTE to sustain efforts.