What do Families of CSHCN Need and Want to Know about Health Plans and Providers Nora Wells, Family

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Family Partnerships for Children with Special
Health Care Needs
Tri-Regional Workshop for Regions V, VI, and VII
September 23-25, 2002 Kansas City,
Missouri Jennifer M. Cernoch Executive Directo
r
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• A national grassroots network of 40,000 families
  and friends speaking on behalf of children with
  special health care needs that provides
  
• Information
• Education
• Support
• Advocacy

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Where We Are

• MCH has been a crucial force in bringing families
  to the policy table.
  
• Families are now participating at the national
  level in workgroups and developing policies and
  procedures.
  
• Now need to continue education of families of the
  importance of this initiative, and roles they can
  play nationally and in their states.
  

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Core Principles

• Partnership strong family-professional
  partnerships improve decision-making, enhance
  outcomes, and assure quality.
  
• Implementation delivery of primary and
  specialty health care and supports that are
  affordable and within geographic reach of all.
  
• Accountability what families practice every day
  cost effectiveness without compromising
  quality, in the delivery of services.
  

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Critical Components of Partnerships

• Families are making decisions at all levels.
• Families are satisfied with the services that
  they receive.
  

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Levels of Partnerships

• Partners with family leaders as State
  Coordinators or State Chapters
  
• Partners with national organizations
• Partners with federal agencies
• Partners at the state level
• Partners at the community level
• Individual partnerships for families

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Mechanisms for Parent Partnerships

• Identifying Parents of CSHCN to participate on
  Advisory Boards and state level workgroups
  
• Ask Us what we want!
• Parents as trainers and liaisons
• Ask Us how we can contribute!
• Parents as staff or consultants in Title V and
  other state level agencies on program and policy
  designs
  
• Ask Us if we like the services!
• Family-friendly newsletters and other printed
  information
  
• Ask Us if we understand!
• Parents participating in state-level policy
  discussions and initiatives around medical
  services
  
• Ask Us what is important to our families!
• Parents as outreach liaisons to other parents,
  minority groups, unserved and under-served
  populations
  
• Ask Us for help!

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Examples of Partnerships

• Medical Home Training with AAP
• Forums on Managed Care
• Data Collection in Region VIII
• Title V/CSHCN Programs and Families
• Respite legislation in Arkansas
• Family Café in Florida
• Family-friendly newsletter in Oklahoma
• Regional information centers in Wisconsin
• Block grant process and family forums in New York

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Achieving Success for All CSHCN

• An agenda for all families
• Will succeed only if all players are fully
  engaged
  
• Will improve quality of services desperately
  needed by families
  
• Families have important roles to play in
  promoting, supporting, and monitoring
  
• Full partnership at every level