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

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Family Participation The MCH Side of the
EquationBetsy AndersonFamily VoicesFeb 21,
2005
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Families in Program and Policy Interviews with
State MCH Programs
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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)

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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

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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

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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)

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Telephone Interview Participation

• Hour long interviews during 2001-2002
• 51 MCH Programs
• 35 with MCH Directors
• 16 with MCH Directors Designees

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Interview Tool Development

• Project Staff
• Advisory committee
• Discussions with MCHB staff
• FV Coordinators
• Piloted with 2 MCH and 2 CSHCN Directors

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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

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Parent Interviewers (11)

• Identification
• Preparation- individual conversation, 2
  step-by-step information packets, conference call
• Continuing follow-along support
• Telephone calling cards

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MCH Directors-- Preparation for Interviews

• Postcard Announcement
• AMCHP Conference display
• Family Voices Web Site posting
• Interview form with letter of explanation

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Findings
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Family Involvement in Title V Programs

• Families are part of program and policy
  activities (n50)
• MCH

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66
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Summary Findings
Family Members
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Family Involvement in Title V Programs

• MCH - Years of family involvement (n50)

42
28
30
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• 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

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Special Initiatives
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Special Initiatives
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Special Initiatives
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Special Initiatives
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Special Initiatives
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Special Initiatives
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State Negotiated MeasuresDegree of Family
Involvement

• Med High
• MCH 97 72
• 7-10 Measures per state
• 500 /- Measures overall

(n49)
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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

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Number of Measures in which Families were
Involved, per Program
Number of States
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State Negotiated MeasuresExamples 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

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• 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) dont
  have a degree after their name, they are just as
  knowledgeable.
• CSHCN Program

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Frequency of Family Involvement in Staff
In-service Training
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Support Offered to Families who Participate in
Title V Activities
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Support Offered to Family Organizations
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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)

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http//www.familyvoices.org/toolbox
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ICHP
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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

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• ...If we dont 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 [phone] Toll Free
1-888-835-5669 ? E-mail kidshealth_at_familyvoices.o
rg Internet ? http//www.familyvoices.org