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

Partnerships – the next generation

Discussion & Questions

Contact Information

Bev BakerCo-Director

National Center for Family-Professional

Partnerships207-459-1009

bbaker@familyvoices.org

www.fv-ncfpp.org/

Beth DworetzkyProject Director

The Catalyst Center BUSPH

617-638-1927bethdw@bu.edu

www.catalystctr.org

We look forward to meeting you at the AMCHP conference in February!

Lynn PedrazaExecutive Director

Family Voices1-888-835-5669

lpedrazza@familyvoices.org

www.familyvoices.org