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 promoted and supported that role, strengthening partnerships between family members and policymakers at all levels of public and private sector organizations.

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 Family-Professional Partners Institute, launched with support from the Massachusetts Department of Public Health.

The Work Group then turned its focus to outreach.  Families of children with special health care needs are culturally, racially, ethnically and economically diverse, and the Work Group recognized the need to reflect diverse family perspectives in its work toward systems improvement.

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)


Suzanne Gottlieb
MA Department of Public Health

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