membershipwork groupsresource centerContact UsNew England Serve



Click on a meeting title to get a summary, with links to handouts and presentation materials. Meeting materials are also available organized by topic.


December 16, 2008
Identifying Priorities for CYSCHN
Invitational meeting co-hosted with the Massachusetts Department of Public Health

Medical home, family support programs and constituency-building were among the highest priorities identified by approximately 40 of the state's child health leaders. Discussing and advising on potential policy directions were a cross-sector, cross-agency, and cross-industry group of physicians, family advocates, public and private payers and policy analysts. Additional priorities: better measurement of the quality of care that children and families recieve, access to health care for all families, care coordination and the integration of public service systems, underinsurance and medical debt, and communication between schools and children's health care providers.


October 11, 2007
Transitions & New Directions: What's Next in Massachusetts for Children and Youth with Special Health Care Needs
This two-part meeting began with a look at Make Things Happen, the Consortium's training program for care coordinators who work with youth with special health care needs as they transition to adulthood. We then had a conversation with the state's new Department of Public Health commissioner about goals and priorities for children's health.



June 14, 2007
With a Little Help from Our Friends: Moving Toward 2010 in Massachusetts
With just three years left until the national 2010 milestone for improving systems of care, we in Massachusetts find valuable inspiration in neighboring Rhode Island. We heard about an innovative project in that state that is strengthening family-centered medical homes, considered that model in the context of advancements being made nationwide, and drew on it to examine progress and priorities here in Massachusetts.

March 27, 2007
Mental Health Services for Children and Youth with Special Health Care Needs: Elements of a System of Care
Children and youth with special health care needs rely on an array of mental health services, but parents and other stakeholders have challenged the adequacy of those services. We heard from parents and service system professionals on unmet mental health needs among children and youth, the effects on families, and strategies to address them.

October 12, 2006
Collaboration in Action: Speaking Out on a State Agenda for Children with Special Health Care Needs
Collectively, Consortium participants have a wealth of knowledge and practical experience about the needs of CSHCN. In our first meeting of the new year, we tapped into that expertise to identify key issues related to achieving the goals for 2010, setting a trajectory for the entire year -- and beyond.


June 14, 2006
Many Voices, One Message: Improving Systems of Care for Children with Special Health Care Needs
A special, expanded program marked New England SERVE and the Consortium's completion of a four-year, federally funded project on health care financing. The morning session focused on cultural perspectives on health care and systems change, while the afternoon sessions centered on the Consortium's ongoing activities.
A community poster session and a panel discussion of health care reform in Massachusetts rounded out the day.

March 2, 2006
Identification of Children with Special Health Care Needs Within the Medical Home: What It Is, Some Examples of How It's Done, and Why It's So Important
Identification is the first, and often the most challenging, step in the process of building a medical home for children with special health care needs. We reviewed various identification models and tools, considered some of the challenges of implementing identification procedures, and discussed the importance of this aspect of medical home from provider and family perspectives. 

December 8, 2005
Access to Durable Medical Equipment (DME): Issues for Children with Special Health Care Needs
We heard a panel describe the basics of DME delivery and financing systems, then identified key challenges and ways the Consortium might pursue solutions. We also heard new findings about unmet needs of Massachusetts families caring for children with special health care needs, and an update on the activities of the Consortium's regional affiliates. 

October 6, 2005
Family-Professional Partnerships and Other Designs on the Future
The recent Family Partners Initiative placed specially trained parents in influential roles within health care organizations. A panel of participants shared their experiences, and we heard plans to build on the pilot's success. Small groups then discussed topics for the Consortium to address in the coming year.


June 2, 2005
Achieving Change in Tough Times: Statewide, Comprehensive Care Coordination for CYSHCN in Massachusetts
The Care Coordination Work Group presented a preliminary plan for defining, organizing and financing a statewide care coordination system. A panel then shared past cases where large-scale progress for Massachusetts CSHCN has been made despite economic obstacles, giving us advice and inspiration.

April 7, 2005
Enhancing Compassion in Medical Homes: Lessons Learned from Palliative Care

"Compassionate care" is one of the defining elements of the Medical Home.  We explored what it looks like, how compassion might be taught, and applied examples from the pediatric palliative care context to Medical Home.

February 3, 2005
Health Insurance and CSHCN: News & Views on Health Insurance Trends in Massachusetts

We explored the emerging trend of "consumer-directed" health plans, and heard the findings from candid interviews with nine health plans about how they make coverage decisions.

December 9, 2004
Employers, Health Plans & Families Caring for CSHCN: Identifying the Points of Connection

The December meeting highlighted two projects that are maximizing supports in the workplace for families caring for CSHCN, and an update on the new Directions manual from the Department of Public Health.

October 7, 2004
Promoting Partnerships Through Shared Information
The October meeting introduced us to two important new resources: the Data Resource Center for CYSHCN, and the Massachusetts Medicaid Policy Institute.


June 3, 2004

Promising Practices: Family-Professional Collaborations that Promote Improvement in Services for CSHCN

Our best-attended meeting ever introduced successful models of family-professional partnership -- in a pediatric practice, a health plan, a medical education program and more. Afterward, a dozen family organizations set up informational exhibits at a unique Resource Fair.

April 8, 2004
Transition: Where Are We in Massachusetts?

The Transition Task Force reported on key findings of the brief it had drafted, and we discussed possible roles for the Consortium in improving transition systems. We also heard updates from other work groups and EOHHS, and viewed the documentary film, “Kiss My Wheels,” which follows the members of a junior wheelchair basketball team.

February 5, 2004
Communication for Quality Care
Topics included effective communication between primary care providers and specialists, and between health plans and their members, and how both contribute to quality care for children with special health care needs and their families.

December 4, 2003
Medical Education and Training
We discussed the new Medical Home Learning Collaborative, which addresses the requirements for implementation and spread of Medical Home; the More to Life than Genes (MTLTG) program at Harvard Medical School, which has been identified among best practices in medical education; and
the Medical Home Work Group's planned survey about medical education efforts that focus on CSHCN and/or medical home.

October 2, 2003
National CSHCN Data & Family Participation
The October meeting introduced us to the CDC's National Survey of Children with Special Health Care Needs and its preliminary findings for Massachusetts, and the Family Participation Work Group presented an update on its activities.


June 5, 2003
Year in Review
The Care Coordination and Family Participation Work Groups gave interim reports, and we heard an update and status overview of the Massachusetts state budget and its implications for children with special health care needs.

April 3, 2003
Family-Centered Care and Medical Home
Consortium members were updated on Medical Home activities throughout the state, and were introduced to two new initiatives: CarePoints, which enhances pediatric palliative care by developing partnerships between parents and professionals; and Coordinated Family-Focused Care, a program of the Massachusetts Behavioral Health Partnership, which uses a blended funding model to provide flexible services for children with serious emotional disturbance.

February 6, 2003
Transition: Supporting Children with Special Health Care Needs in Becoming Adults
The Transition Work Group reported on the development of a background brief on the status of transition services for youth with special health needs, particularly in the areas of health, education, recreation and employment. The Group also invited a panel of experts to share their perspectives on current services and challenges for youth and families experiencing transition in Massachusetts.

December 5, 2002
Strengthening Family Participation in Health Planning, Policy and Financing
The goals, activities and future plans of the Family Participation Work Group were presented to the Consortium.

October 3, 2002
The Massachusetts Consortium for Children with Special Health Care Needs
Presentations included a brief history of the Consortium, an update on its grant funding and activities, recommendations from the Administrative Planning Committee, and a national view on implementing the Healthy People 2010 agenda for children with special health care needs.