Building Community Partnerships to Support Integrated Infant Mental Health Systems of Care

1. Building Community Partnerships to Support Integrated Infant Mental Health Systems of Care Richard Roberts, Diane Behl, Adrienne Akers Early Intervention Research Institute Center for Persons with Disabilities Utah State University Logan, UT 84322-6580 USA www.eiri.usu.edu World Association for Infant Mental Health July 16-20, 2002 Amsterdam

2. EIRI is an interdisciplinary organization committed to investigating and improving policies and practices that support the well-being of at-risk children as well as those with special needs and their families. We conduct research and evaluation as well as provide technical training and assistance at community, state, national, and international levels.

3. Purpose of the Opening Doors Into Rural Communities Project (ODRC) Improve services for children with special needs and families through a participatory action research approach and interagency collaboration.

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

5. Participatory Action Model of Research/Evaluation Program/ Provider/ Staff Consumers/ Family Voices Researchers/ Evaluators

6. Why Use a PAR Approach? PAR efforts help to ensure that the results are meaningful and will make a difference in the lives of the key stakeholders, particularly children and families.

7. How Are PAR Teams Involved? • The PAR team as a whole: • Determines the research questions • Designs research project, including evaluation tools • Carries out the research activities • Analyzes and interprets the data • Shares results in meaningful ways with stakeholders

8. ODRC Work in Lewiston, Idaho Goal: To integrate mental health services into the system of care for young children and their families.

9. Lewiston’s Community Focus • Children with mental health needs often did not qualify for disability programs • Intensive, specialized services were lacking • No systematic process to follow up on referrals • Community services were fragmented • No clear definition of “mental health”

10. ODRC Evaluation Model Phase I Develop Community Focus Phase II Collect Baseline Data Phase III Action Plan Phase IV Measure Change Phase V Report Accomplishments (Recursive loops suggest the dynamic rather than linear nature of the plan)

11. Ways Families Partner PAR • Serving as essential members of task force • Designing questions and methods • Collecting data and other information • Interpreting data • Dissemination

12. Keeping Families Engaged in Interagency Councils: • Recruit families through different doors • Make sure families know why they are there • Value family member’s time • Identify different ways families can participate

13. Defining Mental Health as a Continuum of Care Self-Contained/Disorder- Specific School Program Inpatient Hospitalization Financial Assistance Mentoring Therapy/Counseling Prevention Child Abuse and Neglect Interdisciplinary Team Planning Incarceration Parent-to-Parent Foster Care EI and Preschool for Children with Special Needs Recreational Opportunities Therapy/ Counseling Residential Treatment Center Family Support Respite Care Institutionalization Crisis Intervention Home Visits

14. ODRC Evaluation Tools 1. Community Map • Depicts community services/resources and their relationships 2. Community Self-Assessment Survey • Obtains quantitative information on capacity and coordination 3. Community Service Integration Matrix • Examines the infrastructure of the community system 4. Family Telephone Survey • Measures the family perspective regarding services and their needs.

15. Service Integration Goal: Improved awareness, coordination, and availability with mental health. Target Population: 0-5 Part C/Part B children and families. Outcomes and Accountability: A written interagency policy to support coordinated referral and follow-up. Lewiston, Idaho Service Integration Matrix (1999) Baseline Matrix Key: 1999 baseline Ideal level Intensity of Integration Continuum Informal Formal No Connection Information Sharing and Communication Cooperation and Coordination Collaboration Consolidation Integration 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

16. Lewiston’s Action Plan • Broaden interagency screening to include mental health • Recruit mental health providers to provide training and consultation • Develop a screening coordinator position to ensure follow-up • Increase community awareness of early childhood mental health

17. Service Integration Goal: Improved awareness, coordination, and availability with mental health. Target Population: 0-5 Part C/Part B children and families. Outcomes and Accountability: A written interagency policy to support coordinated referral and follow-up. Lewiston, Idaho Service Integration Follow-up Matrix (2001) Key: 1999 baseline Ideal level 2001 level Intensity of Integration Continuum Informal Formal No Connection Information Sharing and Communication Cooperation and Coordination Collaboration Consolidation Integration 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

18. Benefits of PAR • Multiple perspectives result in stronger buy-in from task force members • Family participation ensures that goals translate directly to improved child and family outcomes • Products of PAR efforts are designed in a variety of formats to reach the various audiences (i.e., parents, providers, community- and state-level policymakers) • PAR offers a mechanism for identifying & resolving potential conflicts • Participation of multiple stakeholders results in more creative problem solving and use resources • Evaluation methods drive the work plan as well as reveal changes

19. Challenges and Solutions of PAR • PAR efforts take more time than traditional research. Gathering data from multiple sources, delegating responsibilities, and reaching consensus require greater amounts of time • Establish ground rules • Share/delegate responsibilities • Pacing the activities so that participants don’t get frustrated with the lengthier process • Set short-term objectives • Report and discuss accomplishments regularly • Communities that lack strong leadership and vision may need more direct facilitation and coaching through the PAR process • Identify and utilize strengths of participants • Offer more direct forms of facilitation and coaching (continued.....)

20. Challenges and Solutions(continued) • Additional funding/resources are needed to support the extra planning meetings, conference calls, stipends for parents • Establish commitment from agency heads • Build funds for parent payments & systems building time into grants • Seek donations from community businesses & organizations • PAR members must be willing to share the work and the rewards • Establish commitment from the beginning • Determine individual strengths and highlight them • Look to media and professional opportunities for recognition • Consumers must be strongly represented and heard • Ensure that multiple parents/consumers participate • Build opportunities for parent/consumer input into the agenda • Allow multiple methods for obtaining parent/consumer input

21. Summary of PAR • Interagency councils must balance: • the need for a comprehensive vision • the practical demand to focus on action • Barriers to effective collaboration are as much institutional and political as they are problems with the methods or content of the evaluation. • No matter how rigorous the scientific method used, shifts in political agendas may determine the fate of many social programs.