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

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

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


1
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
2
  • 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

3
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.

4
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.

5
Critical Components of Partnerships
  • Families are making decisions at all levels.
  • Families are satisfied with the services that
    they receive.

6
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

7
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!

8
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

9
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
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