May 18, 2003

1
Partnerships between Families and
ProfessionalsLooking Back and Looking
ForwardInstitute for Leaders in State Title V
CSHCN ProgramsBaltimore, MD

• May 18, 2003
• Nora Wells

2
History 1970s

• new focus and treatments for children with
  disabilities and special health care needs
  treatment mostly in tertiary care hospitals
• growing ideas of normalization and integration
  at home, school and community
• Parents and professionals work together to pass
  special ed law PL 94-142 (later to be called
  IDEA)
• Pilot parent training and information centers
  (PTIs) grow to funded parent education agencies
  in every state
• Some families begin to work with hospitals on
  visiting, advisory committees, communication

3
History 1980s

• Vanderbuilt Study and Carnegie Council on
  Children report, The Unexpected Minority
• 1982 Katie Beckett waiver passed, acknowledging
  importance of children living at home
• PL 99-457 Early Intervention law recognizes
  important roles for families in program oversight
  
• Parents developing partnerships with
  professionals in information sharing and
  advocacy CAPP project ACCH conferences
  individual parents working in states some
  parents hired by Title V
• Surgeon Generals Conferences on CSHCN MCHB
  framework of family centered, community based,
  coordinated, culturally competent care

4
History 1990s

• Clinton proposes universal health care reform
• December 1992, group of 17 family members meets
  in DC, Family Voices is formed as a volunteer
  communication network voice in the reform
  discussion
• Health care reform crashes, but Family Voices
  organization has raised awareness of issues for
  cshcn value of a national family network
• Partnerships between families of cshcn and Title
  V, AAP, NACHRI, ICHP, academic researchers,
  others grow
• Parents are paid stipends for their roles, a
  number of states hire families to work in Title
  V, parents awarded funded projects and partner in
  others

5
Critical Influences in Family Professional
Partnerships

• Leadership of MCHB
• Funding for family roles/activities at the state
  and national level
• Development of measuring and monitoring,
  including family satisfaction and involvement
• Inclusion of family voice in design and
  implementation of measuring and monitoring
• Influence of MCHB role with families in other
  arenas

6
Examples of Family Partnerships

• Your Voices Counts A family survey conducted by
  Family Voices and Brandeis University
• Family Voices Interviews with Managed Care
  Organizations
• Families in Program and Policy Interviews with
  Title V Programs

7
Your Voices Counts!!Families as Partners in Data
Collection

• Designed with families and academics as full
  partners in research
• Values Key family roles in designing what
  questions to ask, what findings mean, findings
  relevant to family issues
• Families had ready access to put data into action
  
• with legislators
• in program and policy discussions with managed
  care plans, state Title V programs, providers
• 2,220 responses from 20 states

8
Family Voices Materials Developed from Your
Voice Counts Findings

What Do Families Say About Health Care for
Children with Special Needs?
What Do Families Say About Health Care for
Children with Special Needs in California?
The Importance of Public Insurance / Medicaid
Coverage for Children with Special Health Care
Needs
www.familyvoices.org for further information
9
Adding New Areas of Measurement

• Many families provide health care at home such as
  changing bandages, care of feeding or breathing
  equipment, giving medication and therapies, and
  providing transportation to appointments. Do you
  or other family members provide health care at
  home for your child?
• (From MCHB National Survey of CSHCN SLAITS)

10
Parent Interviews with MCOs

• To learn how health care plans address areas of
  special importance for CSHCN
• To collect information about good ideas,
  interesting policies and exemplary programs
• To initiate relationships between health care
  plans and Family Voices
• 41 interviews in 12 states completed

11
Comment from an MCO Provider

• As a pediatric nurse, can you please push for
  input from parents at plans? We need your help.

12
Family Voices Materials Developed From Managed
Care Interviews
Beginning the Conversation
From Conversations to Connections
Selected Highlights from Interviews with Managed
Care Plans
Parents Partnering with Managed Care Plans
www.familyvoices.org for more information
13
Families in Program and Policy Interviews
with State MCH and CSHCN Directors

• Parent leaders conduct interviews by telephone
  (104 completed) with CSHCN and MCH Director in
  each state
• Funded by MCHB, Div of CSHCN Div of Child,
  Adolescent Family Health
• Collect info on
• Kind and extend of family impact to program and
  policy
• Participation in advisory councils, Block Grant
  process, in-service training, negotiated measures
• Recruitment, support and compensation for family
  involvement
• Benefits and impact of family involvement
• Interviews 2001--2002 build on 1992 information
• Report including recommendations - Spring 2003

14
Family Involvement in Title V Programs

• To what extent are families part of program and
  policy activities in your program?
• CSHCN MCH
• Involved in most 57 18
• Occasionally involved 43 66
• Not really involved 0 16

(n53)
(n50)
15
Family Involvement in Title V Programs

• How long have families been involved in your
  program?
• CSHCN MCH
• 1-5 years 28 42
• 6-10 years 28 28
• Over 10 years 44 30

(n53)
(n50)
16

• Much value is placed on families as true partners
  and they play key roles in advocacy and policy
  making- CSHCN program
• 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
Families/Family Organizations Involvement in the
Block Grant Process
18
Parents/Family Members involved in Block Grant
Reviews

• 39 states invited a parent/family member to be a
  member of their Regional Block Grant Review Team
  in 2000 or 2001
• All states have had a parent review their Block
  Grant as part of the federal MCHB Review Team
  (data, other source)

19
1993 Report Questions Became Elements of MCHB
Reporting Requirements (Performance Measure 14)

• Family members
• participate on advisory councils
• receive financial support for parent activities
• become involved with the Block Grant process
• are involved with in-service trainings
• are paid as staff/consultants
• are from diverse cultures

20
How Performance Measure 14 Scores are Determined
by CSHCN Programs

• Internally 49
• Externally 2
• Combination 49

CSHCN (n45)

• Examples
• State Parent Advisory Committees
• Discussions at state and regional levels, among
  staff and parent groups
• Data collection and analysis
• As part of a state contract with an external
  parent group

21

• After a review of what we had done for the whole
  year, I gave it Performance Measure 14 to the
  FAC Family Advisory Council and asked them to
  discuss it, fill it out. Our scores varied by 3
  points, mine being higher...- CSHCN program

22
Growth in Support Offered to Families Family
Organizations by CSHCN Programs
23
Parents Employed as Staff, Consultants, or
Through Contracts with Parent Organizations

• 1993 2002
• CSHCN 41 (21) 79 (42)
• MCH N/A 36 (18)

(n53)
(n51)
24
Family Feedback on Involvement in Program and
Policy Questionnaire to FV Coordinators

• Family perspective on
• Working relationships
• Performance Measure 14
• Benefits of involvement
• Family participation
• Kinds of support
• Difficulties and obstacles
• Ideas for improvement
• Employment of families
• Parent knowledge of employment
• Impact
• Ideas for support

25

• I am pleasantly surprised at the collaboration
  with our CSHCN and Family Voices. Our opinions
  are sought out and respected. -Family Member
• Its an ongoing problem with hiring parents
  within an agency. Whom do they really work
  for?...The expectation needs to be that families
  represent family interests, not the interest and
  marketing needs of their agencies.- Family Member

26
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
• Block Grant Review Materials, Performance Measure
  14
• Title V Information
• http//www.familyvoices.org/toolbox

27

• ...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
• 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

28
Looking Forward

• Funded Family to Family Health Information
  Centers in every state (FOA legislation passed)
• Valued partnerships between parents and Title V
  recognized as a strong coalition for change
• Strengthened family voice in research and data
  collection activities