Step 1: Get Organized
Activity 2: Recruit "champions" (i.e., Administrators, Direct Service Providers, Consumer and Family Advocates, Data Analysts, and Other Key Stakeholders).
Guideline 2 involves forming a State Leadership Team comprised of stakeholders from the broader system of care. In addition to key stakeholders and project "champions," the state interagency team should bring together missing representatives who have previously had little direct communication with the state's CSHCN program.
State Leadership Teams consist of the following essential groups of participants:
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Consumers (parents, youth with special health care needs)
- Parents from various cultural groups
- Representatives from structured parent organizations, e.g., Family Voices
- Youth with SHCN
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State-level agency representation (directors)
- Medicaid
- Education
- Vocational Rehabilitation
- MCH/Public Health
- University Centers of Excellence in Disabilities
- Organized advocacy groups such as Family Voices
- Community-level providers (physicians, public health nurses, etc.)
Involvement of families from diverse cultures is critical. Advantages of family involvement include (a) assurance that the data-driven, decision-making system reflects family priorities; (b) assurance that measurement tools are meaningful to families; (c) assistance in interpreting data; and (d) advocacy for long-term use of data findings to improve the system of care for youth with special health care needs are equally important, particularly in addressing measure #6: transition to adult life.