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RESOURCE CENTER:
FAMILY PARTICIPATION IN HEALTH CARE POLICY-MAKING

 
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Projects & Presentations

Rhode Island Pediatric Practice Enhancement Project (PPEP): Medical Home Enhancement Through Parent-Professional Partnership
Through this project, pediatric practices that serve a large percentage of CSHCN are provided with parent consultants, who help provide a comprehensive, coordinated medical home. Parent consultants link families with community resources, assist in accessing specialty services, and help identify and resolve systems barriers to coordinated care. The PPEP is a partnership of the RI Departments of Health and Human Services, and the RI Chapter of the American Academy of Pediatrics.
June 14, 2007

Launching the Family-Professional Partners Institute (FPPI)
Building on the success of the Family Partners Initiative, the Family-Professional Partners Institute will be created with a 3-year state implementation grant from the Maternal and Child Health Bureau.
October 6, 2005

The Family Partners Initiative (FPI)

This pilot program demonstrated sustainable, meaningful partnership roles for family members of children with special health care needs within a range of health care organizations. The presentation gives an overview of how the pilot was developed and key factors in its success.
October 6, 2005

It Takes a Partnership: Supporting the Parents of Children with Special Health Care Needs
Employer benefits can go far beyond health insurance for families with CSHCN. LifeCare, Inc. is a work/life services vendor serving nearly 1,500 employers with 4.5 million employees. This presentation outlines a win-win formula for families and employers.
December, 2004

Family-to-Family Health Information and Education Center
This new resource is an initiative of Massachusetts Family Voices at the Federation for Children with Special Needs.
December, 2004


Promising Practices: Family-Professional Collaborations that Promote Improvement in Services for CSHCN was the title of the June 3, 2004 Consortium meeting, hosted by the Family Participation Work Group. See the agenda, or the individual presentations:


Publications & Surveys  

Structure & Spark! Building Family-Professional Partnerships to Improve Care for Children with Special Health Needs
The Family-Professional Partners Institute and the Massachusetts Consortium for Children with Special Health Care Needs, Programs of New England SERVE, June 2008

This 116-page publication describes the brokered partnership model developed by the Family-Professional Partners Institute, including the assessing an organization’s partnership readiness, training Family Partners for their role, making contractual arrangements and more.

The Power of Partnership: Sixteen Family-Professional Partnerships That Are Making a Difference for Children with Special Health Care Needs
The Family-Professional Partners Institute and the Massachusetts Consortium for Children with Special Health Care Needs, Programs of New England SERVE, June 2008

This 16-page booklet describes the Family-Professional Partners Institute’s brokered collaborations, which demonstrate a range of sustainable roles for family members in a range of health care and related organizations.

Working Together: The Family-Professional Partners Institute
New England SERVE, June 2006
This oversize brochure presents an overview of what family-professional partnership is, examples of how it works, and ways the Institute works with consumers and organizations to make it successful.

Building State & Community Teams
Issue Brief 03, Champions for Progress, March 2005

Family, Youth & Professional Partnerships in Decision-Making
Issue Brief 05, Champions for Progress, March 2005

Statement on Family Participation in Health Care Policy and Financing
MA Consortium for Children with Special Health Care Needs, June 2003

A one-page statement on the unique contributions families can make to improve health care policy and financing, and why it is critical that they participate.



Links
 


Family Partners Initiative
In this pilot program, parents of children with special health care needs are partnering with health care organizations in roles that will influence policy and program design.

Family TIES of Massachusetts is a statewide information and parent-to-parent support project for families of children with special needs and chronic illness.

Family Voices is a national, grassroots clearinghouse for information and education concerning the health care of children with special health needs.

Institute for Family Centered Care (IFFC)
The Institute for Family-Centered Care serves as an information resource center for consumers, families, and health and human service providers who want support for advancing family-centered care. The site includes a section on
Serving as a Consumer Advisor: Roles Patients and Families Play.

Massachusetts Family Voices, the state chapter of the national organization, hosts an online forum for families and professionals to work together on behalf of children with special health care needs. 

Massachusetts Consortium for CSHCN Family Participation Work Group