Family Participation Work Group
Families of children with special health care needs have a vital role to play in improving systems of care. The Family Participation Work Group promotes and supports that role, strengthening partnerships between family members and policymakers at all levels of public and private sector organizations.
The Work at Hand
Last year, the Family Participation Work Group piloted the Family Partners Initiative (FPI), in which six health care organizations hosted specially trained parent partners in roles designed to influence policy and program design.
That initiative served as the foundation for the new Family-Professional Partners Institute, launched with support from the Massachusetts Department of Public Health.
The Work Group has now turned its focus to outreach. Families of children with special health care needs are culturally, racially, ethnically and economically diverse, and the Work Group recognizes the need to reflect diverse family perspectives in its work toward systems improvement.
The Family Participation Work Group is working to:
- Expand its own membership;
- Identify and better understand what it will mean to become more inclusive; and
- Develop practical and significant ways to broaden family leadership.
The History
Established in 2002, the Family Participation Work Group devoted its first two years to the planning and research activities that led to the Family Partners Initiative.
It surveyed parent leadership groups across Massachusetts, along with the agencies and organizations represented in the Consortium, to assess the opportunities for increasing policy partnerships.
In 2004, the Work Group hosted the final Consortium meeting of the year. The meeting featured presentations about different ways family members were already partnering with health care organizations, and a Resource Fair highlighting the breadth and depth of family organizations in the state.
In 2005, the Work Group piloted the Family Partners Initiative, which became the foundation for the current Family-Professional Partners Institute.
This work is supported by the Maternal and Child Health Bureau within the Health Services and Resources Administration, U.S. Department of Health & Human Services.
Co-Chairs:
Dalene Basden
Parent Professional Advocacy League (PAL)
ptahsw@verizon.net
Suzanne Gottlieb
MA Department of Public Health
suzanne.gottlieb@
state.ma.us
Reports:
Family Participation Work Group Interim Report, December 2003
This report provides a summary of the activities, recommendations, and policy statements of the Consortium’s Family Participation Work Group.
Mission & Policy Statements:
Family Participation Work Group Mission Statement
2006
Supporting Families to Participate in the Massachusetts Consortium for Children with Special Health Care Needs
This policy statement, presented by the Family Participation Work Group and endorsed by the Consortium Steering Committee, outlines the policy for financial support to family members not otherwise compensated for their time spent participating in Consortium activities.
Endorsed September 2003
Statement on Family Participation in Health Care Policy and Financing
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.
June 2003
Additional Resources:
For articles, educational materials, and links to further information about family participation, please visit our Resource Center.
Other Work Groups:
Care Coordination
Medical Coverage Decision-Making
Medical Home
Transition to Adulthood