ABOUT THE CONSORTIUM

The Massachusetts Consortium for Children with Special Health Care Needs is a working group dedicated to improving systems of care for children and families in the state.

Its members are parents and providers, advocates and administrators, consumers and professionals from the public, private, and non-profit sectors.

Together, Consortium members are committed to promoting and realizing the Healthy People 2010 national objectives of building a more responsive and family-centered system of care for children with special health care needs.

Work groups conduct projects focused on specific goals for system improvement. Two regional affiliates extend systems improvement efforts across the state.

The Consortium meets as a large group several times a year, providing a unique forum for connection and communication among representatives from different parts of the system of care.

New England SERVE, an independent health research and planning organization, established the Consortium in 1999 and continues to convene and facilitate its activities.

Who are children with special health care needs?
According to a definition developed by the U.S. Department of Health and Human Services and the American Academy of Pediatrics, children with special health care needs are those who live with any of a broad range of chronic illnesses, or medical or behavioral conditions expected to last twelve months or more.

They include children with cerebral palsy, developmental delay, ADHD, depression, sickle cell anemia, childhood cancers, cystic fibrosis, and many other conditions. Some require only an accurate diagnosis and routine treatment and monitoring. Others require life-sustaining technology, treatment, and medicines throughout their lives. Virtually all, no matter the severity of their condition, live at home with their families.

Findings from a recent national survey show that approximately 14% of all children nationwide meet this definition, including nearly a quarter of a million children in Massachusetts.

For additional data, please visit the Data Resource Center on Children and Youth with Special Health Care Needs.

• Mission & Policy Statements
• Core Values
• Goals for CSHCN
• Steering Committee
• Staff

WORK GROUPS

• Care Coordination
• Family Participation
• Medical Coverage Decision-Making
• Medical Home
• Transition to Adulthood

• Central Massachusetts Partnership for Children and Youth with Special Health Care Needs

• Western Massachusetts Consortium for Children with Special Health Care Needs

• In-kind donations from members and their organizations

Grants and contracts from:

• The Maternal & Child Health Bureau, Health Resources & Services Administration, U.S. Department of Health & Human Services
• The American Academy of Pediatrics
• The Massachusetts Department of Public Health
• The Deborah Munroe Noonan Memorial Fund

Executive Director's Report
June, 2007

Years in Review/Preview:
June, 2006
October, 2005
October, 2004

Focus of Work Group Activities
October, 2005

Basic structure, issues and background of the Consortium:
Building a Better System of Care for Children with Special Health Care Needs
July, 2003