Family Advisor Initiative

Building Connections Between Health Plans and Families in Massachusetts to Ensure Quality Care for Children with Special Health Needs

In 2001, Family Voices joined with New England SERVE on a project to learn more about the health care services for children with special health care needs here in Massachusetts. Please learn more about this project:

What were the goals of The Family Advisor Initiative?

  1. To strengthen the network of Massachusetts families of children with special health care needs who can serve as advocates and advisors on health policy and managed care.
  2. To collect information from health plans that describes their current capacity to identify and serve children with special health care needs and their families in Massachusetts.
  3. To initiate constructive relationships between health plans and family leaders in Massachusetts.
  4. To use the information collected to improve the quality of systems of care for children with special health needs.
  5. To demonstrate effective parent-professional collaboration in research, data collection and policy making.

How was this accomplished?

  • The Family Advisor Initiative recruited, trained and supported a group of parents to conduct interviews with health plans in Massachusetts. These interviews sought to identify current policies and services available to children with special health care needs and their families.
  • Each interview was conducted by a team of two parents, using a set of interview questions developed and tested in previous interviews.
  • The health plans to be interviewed reflected the variety of organizations currently operating in Massachusetts, including a range of managed care plans, publicly supported and private health insurance plans, as well as self-insured plans provided by large employers.
  • Information collected from the interviews was compiled into a report, highlighting good ideas and promising practices from managed care organizations and other health plans. Individual plans were not identified by name in the report.
  • The report was used to bring parents, health policy makers and health plans together to address opportunities for improving systems of care in Massachusetts at the Partnerships For Quality Forum held on October 26, 2001.

Who is organizing this initiative?

This is a collaborative project between Family Voices and New England SERVE. Family Voices is a national grassroots network speaking on behalf of children with special health care needs. More than 30,000 families and friends from every state are part of the Family Voices network. Volunteer coordinators and members in each state serve in many capacities to bring the family perspective to policy discussions. New England SERVE is a regional health policy and research organization, established in 1983 to promote quality systems of care for children with special health needs and their families. New England SERVE has been working with the six New England state Departments of Public Health, other state agencies, families, providers and health plans to build family centered measures of quality care and to support collaboration between families and professionals to make family centered care a reality.

How does this initiative connect to other national and state efforts?

This effort to collect information from health plans in Massachusetts is based on an ongoing Family Voices project. Seventeen (17) managed care plans have already been interviewed in 10 states across the US. This project has demonstrated the power of family directed conversations with health plans to identify strengths and gaps in the system of care. Additional managed care interviews will be completed around the country under a newly funded effort by Family Voices called, From Data to Action. The interviews conducted in Massachusetts will be part of that larger national project.

The Family Advisor Initiative is also linked to the current efforts of New England SERVE to bring families into policy advising roles with health plans to improve the quality of care for children with special health needs. Findings from these interviews will support the efforts of the Massachusetts Consortium for Children with Special Needs, a coalition of public and private organizations-parents and professionals- convened by New England SERVE to address system level barriers to quality care for these children and families.

How is this initiative funded?

The work of the Family Advisor Initiative was supported by Family Voices through a grant from the David and Lucile Packard Foundation of California and additional funding from the Massachusetts Department of Public Health. Other funding was contributed by New England SERVE, with support from the federal Maternal and Child Health Bureau, Department of Health and Human Services, and the Pediatric Alliance for Coordinated Care (P.A.C.C. project).