SLIDE 1: As families, health plans, providers, advocates and state agency leaders come together to build partnerships to improve the quality of care for CSHCN, 4 key elements will be crucial to making those partnerships effective:

1. Establishing a shared definition for quality: All partners will need to agree on set of measures for what constitutes quality care. Recent progress with NCQA and the special HEDIS measure with supplemental items for CSHCN are an important contribution to a shared definition of quality. The 2010 objectives for CSHCN make it clear that families of CSHCN are to participate in decision making at all levels of the system, including measuring and assessing the quality of care, and family satisfaction with care should be assured.
2. Understanding the complex system of care delivery: All partners will need to gain a better understanding of how the public and private health systems combine to meet the needs of these children and their families; how health, education, early intervention, SSI and Title V all participate in providing care for CSHCN and how complex care delivery becomes for children who are heavy users of these systems of care.
3. Understanding the needs of CSHCN and their families: Beginning with the landmark

Vanderbilt Study in 1985 and the national endorsement of family-centered community-

based care, we have seen a growing understanding and commitment to respecting the

centrality of families, the flexible breadth of services needed by CSHCN, and the need to attend to the developmental needs of children in their care delivery. Speakers this morning-both providers and families- emphasized the range of these needs. The gaps in the system’s current capacity to meet these needs were also documented by the Family Voices national survey.

4. Establishing mutual respect: The goal must be to establish open communication for these partnerships to work, with a free exchange of information. Information is power. One parent spoke this morning of families of CSHCN offering health plans and health care providers an "early warning" system, identifying problems and barriers in care delivery or quality. Partnerships characterized by mutual respect and listening can add value on all sides.

SLIDE 2: There has been tremendous progress in the last decade on the national level, where key organizations dedicated to improving maternal and child health have established important new linkages with major quality oversight groups and with families. The Maternal and Child Health Bureau (Title V), and the federal Medicaid agency have established new partnerships with NCQA, the major quality assurance organization for health plans in this country. In securing a new HEDIS measure for CSHCN, working in collaboration with the Foundation for Accountability (FACCT), the American Academy of Pediatrics (AAP) and Family Voices, we have a solid foundation on the national level to support strong partnerships on the state level.

SLIDE 3: In Massachusetts, we have seen new evidence of groups coming together to build partnerships and effective collaborations for CSHCN. 1) The Massachusetts Consortium for CSHCN, a forum for addressing system level barriers to care, has been bringing together public and private agencies, families, providers, advocates and health plans since 1998. 2) The recent Family Advisor Initiative offers another exciting example of how families and health plans can begin to work together to improve quality systems of care. 3) The Department of Public Health’s new initiative to enhance care coordination services for CSHCN illustrates an innovative partnership between the DPH and primary care physicians interested in providing comprehensive care to CSHCN. 4) The Massachusetts Association of Health Plans’ endorsement of the recent Family Advisor Initiative, and their participation at this forum demonstrates further evidence of an interest in strengthening partnerships between health plans and consumers. 5) And the Parent Professional Advocacy League (PAL) in Massachusetts provides evidence of how families and professionals have collaborated in our state to identify gaps in the children’s mental health system and work together to find solutions.

SLIDE 4: Recent trends in the larger context of the health care industry may also provide evidence for why partnerships for quality care may be even more successful now than in the past. At least four trends seem to indicate new opportunities for families of CSHCN to enter the health care quality arena as partners:

1. Increased attention to public discontent and concern over the future of our health care system,

2. Increased survival of children due to the success of research, better trauma and surgical care and innovation;

3. The promise of broad based access to information by consumers via the internet;

4. Increased attention by purchasers to consumer satisfaction and the emphasis on educating consumers to be informed purchasers and users of care.

Two additional characteristics of the current environment may add special concern to families who are heavy users of the health care system:

5. Increased reports and evidence of physician dissatisfaction

6. Increasing interest among employers and purchasers to shift to a defined contribution for health care insurance rather than a defined set of benefits.

SLIDE 5: With a national agenda for CSHCN endorsed by so many partners and a 10 year plan at the national level of how to achieve these goals; a shared definition of CSHCN; new tools available for identification; the promise of statewide data in 2002 from the SLAITS survey; and a demonstrated readiness in our state…NOW is the time for effective and meaningful partnerships to get to work in Massachusetts.

SLIDE 6: The afternoon sessions will provide participants with an opportunity to consider 4 main areas for improvement in our state’s system of care for CSHCN. These four areas were identified in the findings from the interviews with health plans done through the Family Advisor Initiative in our state. The afternoon sessions invite you to think about the power of partnerships as you identify new strategies for improving the quality of care in:

• Services for children with behavioral issues
• Home- health and community-based services
• Care Coordination
• Identification of CSHCN