Family Participation: The MCH Side of the Equation

Betsy AndersonFamily VoicesFeb 21, 2005

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

Funding Sources

U.S. Department of Health and Human ServicesHealth 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)

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

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

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)

Telephone Interview Participation

• Hour long interviews during 2001-2002

• 51 MCH Programs

– 35 with MCH Directors– 16 with MCH Directors’ Designees

Interview Tool Development

• Project Staff

• Advisory committee

• Discussions with MCHB staff

• FV Coordinators

• Piloted with 2 MCH and 2 CSHCN Directors

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

Parent Interviewers (11)

• Identification

• Preparation- individual conversation, 2 step-by-step information packets, conference call

• Continuing follow-along support

• Telephone calling cards

MCH Directors-- Preparation for Interviews

• Postcard Announcement

• AMCHP Conference display

• Family Voices Web Site posting

• Interview form with letter of explanation

FindingsFindings

Family Involvement in Title V Programs

Families are part of program and policy activities (n=50)

MCH

Involved in most

Occasionallyinvolved

Not really involved

18%

16%

66%

0 20 40 60 80 100

Hired as staff or consultants (n=50)

Involved in in-services training (n=51)

Support offered for familyorganization activities (n=49)

Support offered for Family Activities(n=47)

Involved on advisory committees ortask forces (n=48)

Involved in Block Grant process(n=49)

MCH 2002

Summary Findings

% Family Members

• MCH - Years of family involvement (n=50)

Family Involvement in Title V Programs

1-5 years

6-10 years

Over 10 years

42%

28%

30%

“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

Special Initiatives

0 20 40 60 80 100

Racial Disparities

Parenting Education

SIDS

Perinatal Care

Genetics

SCHIP

Child Care

Healthy People 2010

Health Care Quality

Bright Futures

% MCH Programs

% Families involved

Special Initiatives

0 20 40 60 80 100

ParentingEducation

RacialDisparities

% MCH Programs

% Families involved

Special Initiatives

0 20 40 60 80 100

SIDS

PerinatalCare

% MCH Programs% Families involved

Special Initiatives

0 20 40 60 80 100

Genetics

S-CHIP

% MCH Programs% Families involved

Special Initiatives

0 20 40 60 80 100

ChildCare

HealthyPeople2010

% MCH Programs% Families involved

Special Initiatives

0 20 40 60 80 100

HealthCare

Quality

BrightFutures

% MCH Programs

% Familiesinvolved

State Negotiated MeasuresDegree of Family Involvement

Med High

MCH 97 72

7-10 Measures per state500 +/- Measures overall

(n=49)

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

0

2

4

6

8

10

0 1 2 3 4 5 6 7 8 9 10

Number of Measures

MCH (n=49)

Number of Measures in which Families were Involved, per Program

Number of

States

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

“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

Frequency of Family Involvement in Staff In-service Training

0% 20% 40% 60% 80% 100%

None

Rarely

Occasionally

Regularly

MCH (n=51)

Support Offered to Families who Participate in Title V Activities

0% 20% 40% 60% 80% 100%

No Support

Mentoring

Child/RespiteCare

Payment

Travel Stipends

MCH (n=47)

Support Offered to Family Organizations

0% 20% 40% 60% 80% 100%

No Support

Other

Space

Grants

In-kind Services

Special Projects

Clerical Support

MCH (n=49)

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)

http://www.familyvoices.org/toolbox

ICHP

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

“...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 VOICESSpeaking on Behalf of Children and Youth with Special Health Care Needs

2340 Alamo SE, Suite 102, Albuquerque, NM 87106 Telephone 505-872-4774 Fax 505-872-4780Toll Free: 1-888-835-5669 E-mail: kidshealth@familyvoices.org Internet: http://www.familyvoices.org