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From its establishment in 1999 until its closing in 2009, the Massachusetts Consortium for Children with Special Health Care Needs occupied a unique position in the constellation of organizations that work to improve the way we care for children in our state.

With a focus on systems improvement, the Consortium established a creative venue for identifying, exploring, and addressing barriers to high quality care for children and families who need it most. Stakeholders from across the system of care came together in a candid forum to discuss, debate, and learn from each other about the issues.

These exchanges informed the Consortium's work group activities, which included research, fact finding, training, and developing policy recommendations.

The Consortium's mission for Massachusetts was aligned with the six national health objectives for children with special health care needs outlined in Healthy People 2010.

More than 200 active members from more than 75 organizations in Massachusetts participated in the Consortium:  providers and payers, advocates and administrators, and consumers and professionals from the public, private, and non-profit sectors. Two regional affiliates extended systems improvement efforts across the state.

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 the 2001 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


• Parents of Children with Special Health Care Needs

• Health Care Providers from Diverse Settings

Health Plan Administrators

• Public Health, Mental Health, and Human Service Professionals

• Researchers & Educators


• Care Coordination
• Community-Based Systems of Care
• 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

rants 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
• Children's Hospital Boston
• Blue Cross Blue Shield of Massachusetts