1. Family Participation: The MCH Side of the Equation Betsy Anderson Family Voices Feb 21, 2005

2. Families in Program and Policy: Interviews with State MCH Programs Families in Program and Policy: Interviews with State MCH Programs

3. Funding Sources U.S. Department of Health and Human Services Health Resources and Services Administration Maternal and Child Health Bureau Division of Child, Adolescent and Family Health (6U93 MC 00121) Division of Services to Children with Special Health Care Needs (H H02 MC 00060-04-03)

4. We would like to thank…. ♥ David Heppel, Division of Child, Adolescent and Family Health ♥ Diana Denboba, Division of Services to Children with Special Health Care Needs ♥ MCH and CSHCN State Staff ♥ Family Interviewers ♥ Family Voices Staff

5. Purpose To collect and report information on family involvement with state MCH and CSHCN programs Baseline for MCH Update CSHCN from Interviews done in 1992 In this report only MCH data will be reported

6. Background Previous reports: Family Voices Families in Program and Policy: Report of a 2002 Survey (CSHCN) Family Employment in State Title V Programs (CSHCN) (1995) Families in Program and Policy: Survey of Parent Participation (CSHCN) (1993)

7. Telephone Interview Participation Hour long interviews during 2001-2002 51 MCH Programs – 35 with MCH Directors – 16 with MCH Directors’ Designees

8. Interview Tool Development Project Staff Advisory committee Discussions with MCHB staff FV Coordinators Piloted with 2 MCH and 2 CSHCN Directors

9. Interview Topics Family Involvement in MCH Programs Advisory Committees In-service Training HRSA/MCH Special Initiatives Title V State-Negotiated Measures Title V Block Grants Support for and Relationships with Families and Family Organizations Family Members Employed as Staff or Consultants

10. Parent Interviewers (11) Identification Preparation- individual conversation, 2 step- by-step information packets, conference call Continuing follow-along support Telephone calling cards

11. MCH Directors-- Preparation for Interviews Postcard Announcement AMCHP Conference display Family Voices Web Site posting Interview form with letter of explanation

12. Findings

13. Family Involvement in Title V Programs Families are part of program and policy activities (n=50) MCH 18% 16% 66%

14. Summary Findings % Family Members

15. MCH - Years of family involvement (n=50) Family Involvement in Title V Programs 42% 28% 30%

16. “It has been a very interesting, complex, sustained influence on our whole division and the behavior of our staff as well as the department…” MCH Program

17. Special Initiatives

23. State Negotiated Measures Degree of Family Involvement MedHigh MCH 97 72 7-10 Measures per state 500 +/- Measures overall (n=49)

24. Keyword Categories for Measures with Family Involvement Measures varied from state to state; the most frequent MCH key words were: Access to Health Care Morbidity/Mortality Primary/ Preventative Health Care Health Screening

25. Number of Measures in which Families were Involved, per Program Number of States

26. State Negotiated Measures Examples of Family Roles: MCH Families and teens involved in developing County Adolescent Health Plans Families offered ideas to market MCH and SCHIP Families have led the prevention advisory committee Parents pressured schools for tobacco intervention

27. “Other programs within the Bureau have become more aware of how important it is to have families involved in their decision making and policy making… even though they (parents) don’t have a degree after their name, they are just as knowledgeable.” CSHCN Program

28. Frequency of Family Involvement in Staff In-service Training

29. Support Offered to Families who Participate in Title V Activities

30. Support Offered to Family Organizations

31. Family Members Employed as Staff or Consultants 2002 MCH n=(50) 36% (18) States Employ Family Members: Directly (9) Through another agency (2) As consultants, directly (7) As consultants, though other agency (4)

32. http://www.familyvoices.org/toolbox

33. ICHP

34. Title V Toolbox for Family Participation Products from states that have been developed to support family participation are accessible on a web site Mission Statements and Policies Family Advisory Committee Development Tools Family Employment Tools, Contract Information Needs Assessments and Focus Group Tools Title V Information http://www.familyvoices.org/toolbox

35. “...If we don’t involve families in retooling programs, protecting funding, making programs culturally relevant, we are missing the boat. We do involve families at the local level, but it is very difficult at the state level.” MCH Program FAMILY VOICES Speaking on Behalf of Children and Youth with Special Health Care Needs 2340 Alamo SE, Suite 102, Albuquerque, NM 87106  Telephone 505-872-4774  Fax 505-872-4780 Toll Free: 1-888-835-5669  E-mail: kidshealth@familyvoices.org Internet:  http://www.familyvoices.org