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Role of Families in Title V and Family-Professional
Partnerships
Presented by Lynn Pedraza, Bev Baker,
and Beth Dworetzky
AMCHP Family Scholars
December 20, 2012
Introductions
Assistant DirectorCatalyst Center:
Improving Financing of Care for CYSHCN
Bev Baker
Co-DirectorFamily Voices
National Center for Family /Professional
Partnerships
Beth DworetzkyLynn Pedraza
Executive DirectorFamily Voices
Objectives
Meet two National CentersA little History Explain how policies contribute to FPP* Explain how FPPs contribute to systems
change Describe factors that contribute to successful
FPPs from both sides Describe the responsibilities of families and
professionals in FPP *FPP = Family-Professional Partnerships
Funded by the Division of Services for Children with Special Health Needs within the federal Maternal and Child Health Bureau, Lynda Honberg, Project Officer
A project of the Health and Disability Working Group at the Boston University School of Public Health
The National Center dedicated to the MCHB outcome measure: “…all children and youth with special health care needs have access to adequate health insurance coverage and financing.”
Catalyst Center: What we do
We work with states (Title V, Medicaid, legislators, others) and stakeholder groups (family leader organizations, etc) to: Provide technical assistance on health care
financing policy and practice Conduct policy research to identify and evaluate
financing innovations Create resources (educational products like policy
briefs, tutorials, and webinars) Connect those interested in working together to
address complex financing issues
Catalyst Center: What we don’t do
• No direct advocacy or lobbying• No benefits counseling for individual families• Excellent Resourceso Catalyst Center Family Resources Pageo http://hdwg.org/catalyst/resources
o National Center for Family ♥ Professional Partnerships
o Locate the Family-to-Family Health Information Center in your state
o http://www.fv-ncfpp.org/
www.familyvoices.org
We are . . . a national family-run non-profit organization founded (1992) by families of CYSHCN to activate family roles in health care
Our mission is . . . to achieve family-centered care for all children and youth with special health care needs and/or disabilities
Through our work, we . . . • Provide families with tools to make informed
decisions, • Encourage self advocacy/empowerment in
youth/young people with disabilities • Build partnerships among families and professionals• Advocate for improved public and private policies• Serve as a trusted resource on health care
www.familyvoices.org
Our Projects: • NCFPP: Building family/professional
partnershipswww.fv-ncfpp.org
• and wellness for all children, including CYSHCNwww.brightfuturesforfamilies.org
• KASA: Encouraging self advocacy/empowerment in youth/young people with disabilitieswww.fvkasa.org
Our Connections with Families & Professionals:
• Website • Facebook • Twitter: Materials, social media, news alerts, e-newsletters
• Memberships: Individual, organizational, State Affiliates
• Family Stories: Real-life policy impacts
FV-NCFPP is the National Center dedicated to the MCHB outcome measure: families will partner in healthcare decision-making for CYSHCN at all levels. We
• Created the concept of F2F HICs and pushed for their funding
• Provide peer mentoring, support, training, TA to family leaders in every state
• Promote partnerships between family and professionals by providing tools, opportunities, and mentorship “The NCFPP staff have provided valuable guidance and direction and
are committed to developing future leaders.”
“Cultural broker guide is an excellent resource, gives great ideas; we share with other family organizations and CBOs.”
FPPs: A Definition
The Relationship between families and providers
where there is
Two-way collaboration and support Mutual trust and respect Equality in the relationship
The way things were…
1950’s – 60’s Parents presumed to lack the knowledge & skills to be
decision-makers Decisions made primarily by providers Families offered therapy to learn to “cope” with child’s
disability
1960’s – 70’s Parent “training” Parents as therapists to maximize opportunities for
interventions
1970’s – 80’s Initiatives to work toward family-centered models of care Recognition that families “know their child best,” have valuable
input that contributes to improved outcomes valued partners
Systems change due to influence of Laws & Policies
Federal Special Ed Law passed, 1974: families and special educators work together to pass PL 94-142 (became IDEA); (PA passed first state special ed law)
Roles for families: “parent training and information centers” in every state help families learn their roles in in special education; families meet across special needs (70’s)
Early Intervention Law/regulations (80’s): expanded roles for families in planning their own child’s care; roles in ICCs at the program and policy level
Families influence policy changes in healthcare
Patient’s Bill of Rights/Informed Consent: patients need access to information, decision making roles
Tech Dependent children come home – Home and Community Based Services waivers (Katie Beckett)
Hospital visiting hours change to allow families 24 hour visiting
Design of facilities take in to account family needsHospital Advisory Committees/ Family Resource Centers
createdFamilies as Faculty – in grand rounds, in service
training, medical schools and pediatric provider training programs, public health programs.
Matching families to healthcare students for in home experiences of daily life
Standing on the shoulders of giants
Took a “deficit-based, categorical, medical model of care” “consumer-driven, family-centered and strength-based”
FPP in Title V
1982: Surgeon General’s Workshop on “Children with Handicaps and Their Families.” Developed strategies for comprehensive services
needed by CYSHCN; Addressed the challenges and burdens of the
families w/CSHCN Stimulated development of community resources
1987: Surgeon General's Report on Children with Special Health Care Needs Focus on Family-Centered, Community-based,
Coordinated Care
Family-Centered Care & Family Involvement
1989: OBRA* '89 & state requirements for Title V funding: Annual reporting Needs assessments Public input
When states report on Title V activities, there’s a measure for Family Involvement in Title V CYSHCN programs.
See Snapshot for each state’s score at https://perfdata.hrsa.gov/mchb/TVISReports/Snapshot/SnapShotMenu.aspx.
Visit http://www.hdwg.org/catalyst/online-chartbook/ to compare states to each other or to National Average.
Focus on family-centered, community-based, coordinated care.
*OBRA = Omnibus Budget Reconciliation Act
Title V Today
Has undergone legislative and organizational changes
No longer a program to “extend and improve….services for locating crippled children and for providing medical, surgical, corrective, and other services and care, and facilities for diagnoses, hospitalization, and aftercare for children who are crippled…”
Recognizes this will not happen unless family voices are heard and families are at each table in which decision making occurs. Thus, the involvement of families is a key indicator of systems development.
Nothing about us without us
1990’s – present
FPP and FCC as the “standard” of care; ACA
Idea that no policy should be decided withoutthe full and direct participation of members of the group(s) affected by that policy
This involves all marginalized groups –without regard to disability, race socio-economic status
FAMILY PARTICIPATION IN CSHCN PROGRAM
Family members participate on advisory committee or task forces
Financial support offered for parent activities or parent groups.
Family members are involved in MCH Block Grant Application process.
Family members participate in in-service training
Family members hired as paid staff or consultants
Family members of diverse cultures involved in all of the above activities
Scale: 0 = Not Met 1 = Partially Met 2 = Mostly Met 3 = Completely Met Scoring: best possible = 18
See all scores Catalyst Center Chartbook http://hdwg.org/catalyst/state-data-chartbook
Family Involvement in Title V
FPPs - Are we there yet?
2001/02 2006/05 2009/10
57.5 57.4 70.3
National Survey of Children with Special Health Care Needs. NS-CSHCN 2009/10. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved 12/16/12 from www.childhealthdata.org.
CSHCN whose families usually or always feel that they are partners in decision making around issues important to their child's health.
Factors that hinder partnerships?
Attitude/Belief that “we already do that” Concerns about confidentiality Resistance to change Lack of resources – time, money Lack of trust Communication: Complexity of listening, avoiding jargon,
articulating a purpose Fear Culture
Hispanic CSHCN/ Spanish primary household language
59.5
Hispanic CSHCN / English primary household language 65.6 Non-Hispanic CSHCN 71.6
CSHCN whose families are partners in shared decision-making
National Survey of Children with Special Health Care Needs. NS-CSHCN 2009/10. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved 12/18/12 from www.childhealthdata.org.
Describe factors that contribute to successful Family and Professional
Partnerships from both sides
Communicate & share information openly and objectively
Make decisions togetherBe willing to negotiateAcknowledge each other’s skills and expertiseBe inclusive Respect each others’ points of viewLearn from each otherDevelop a shared agendaCreate action items and timelinesUse evidenced-based research (published articles,
data, family stories to make the case for changeEvaluateShare your successes
Factors that contribute to successful Family and Professional Partnerships
Other factors that contribute to successful partnerships
• Commitment from the top• Identification of consumers to
participate/ongoing support in their roles• Critical mass of participants; not a solo
representative; commitment over time; mentoring
• Thorough, transparent planning process; proactive creative thinking about challenges and solutions
• Clear articulation of value from each perspective
• Financial support to consumer groups and consumers
Resources
National Responsible Fatherhood Clearinghouse Online Library http://basis.icfi.com/cwig/ws/library/docs/fatherhd/SearchForm
National Center for Cultural Competencehttp://nccc.georgetown.edu/
Family Voices Title V toolbox for Family Participationhttp://www2.familyvoices.org/projects/toolbox/
The Seven Challenges Workbook — Communication Skills for Success at Home & Workhttp://newconversations.net/ (English, Spanish, Portuguese)
Partners in Policymakinghttp://www.partnersinpolicymaking.com/online.html
Resources from the Catalyst Center
Catalyst Center www.catalystctr.org
Dancing with Data traininghttp://hdwg.org/catalyst/data
Publications and more section of websitehttp://hdwg.org/catalyst/publications
Enewslettershttp://hdwg.org/catalyst/publications/pastissues
Chartbook state pages
http://hdwg.org/catalyst/state-data-chartbook
Resources from the NCFFP
Two reports on partnerships with CSHN programs
Families in Program and Policy FiPPs CSHCN Report
Families in Program and PolicyFiPPs MCH Report)
http://www.familyvoices.org/work/title_v?id=0012
Contact Information
Bev BakerCo-Director
National Center for Family-Professional
Partnerships207-459-1009
www.fv-ncfpp.org/
Beth DworetzkyProject Director
The Catalyst Center BUSPH
www.catalystctr.org
We look forward to meeting you at the AMCHP conference in February!
Lynn PedrazaExecutive Director
Family Voices1-888-835-5669
www.familyvoices.org