Building Connections to Build Better Care

Consortium Outreach
Monthly E-Newsletter of the Massachusetts Consortium for Children with Special Health Care Needs

   
 

Links to 2008-2009 Resources (pdf's)

Background and Policy Recommendations

Durable Medical Equipment: Challenges to Access for Children with Special Health Care Needs in Massachusetts

Getting A Break: A Roadmap to Respite Care for MA Families of CSHCN

Identifying Top Priorities for CSHCN: Joint Meeting of MA Consortium for CSHCN and MA DPH

Implementation of Chapter 171

"Is Your Child Different?" Brochures from the Opening Doors Project

Preparing for Practice: Addressing Special Health Care Needs in Pediatric Residency Programs


June, 2009

Dear Consortium Members and Friends,

It is with great sadness that I announce the closing of the Massachusetts Consortium for Children with Special Heath Care Needs at the end of June 2009. In these challenging economic times, we have not been able to secure funding sufficient to sustain our work.

Since 1999, the Consortium has been dedicated to improving systems of care for children with special health care needs and their families throughout the Commonwealth of Massachusetts. Starting as an informal networking group of dedicated researchers, policy makers, families, physicians, providers, and advocates, the Consortium grew to more than 200 individual and organizational members, all committed to the belief that communication and collaboration among stakeholders across the system of care is essential to achieving significant, sustainable systems change. We have accomplished much over the last ten years and are proud of our many contributions to policies and programs affecting children with special health care needs and their families.

In spite of the fiscal challenges of this past year, we continued to advance our mission through innovative projects and strategies that addressed a variety of issues affecting children with special health care needs:

  • June 2008: In collaboration with the MA Chapter of the American Academy of Pediatrics and with funding support from the MA Department of Public Health, the Consortium's Medical Home Work Group, led by Dr. Bev Nazarian, completed the publication, Preparing for Practice: Addressing Special Health Care Needs in Pediatric Residency Programs.
  • The Community-Based Systems of Care Work Group, under the leadership of Kathy Ryan, partnered with the MA Family-To-Family Health Information Center at the Federation for Children with Special Needs to produce two timely resources:
  • December 2008: The Consortium and the MA Department of Public Health co-hosted a meeting of child health leaders from across the Commonwealth to identify policy priorities relating to children with special health care needs. Medical home, family support programs and constituency-building were among the highest priorities identified, all of which will guide the Department of Public Health's efforts to strengthen public supports for children with special health care needs and their families.
  • December 2008: We completed the DME Access Project, a study of families' experiences acquiring durable medical equipment (DME) for their children with special health care needs.
  • January 2009: The findings of the DME Access Project provided the impetus for Senate Bill No. 800, "An Act Establishing A Commission to Reduce Unnecessary Wait Time for Children with Special Health Care Needs To Receive Needed Medical Equipment Such as Wheelchairs and Lifts." The Consortium drafted the legislation and Senator Stephen Buoniconti (D-Hampden) submitted the bill on January 12th. We enlisted 15 other state senators and representatives to sign on as co-sponsors. This is the Consortium's first legislative effort, and if passed, would address barriers to access to durable medical equipment for children with special health care needs.
  • February 2009: The Consortium completed a three year collaboration with the RRTC Opening Doors Project of Children's Hospital Boston and the Institute for Community Inclusion. Our work this year focused on developing resources for families of minority and immigrant communities to help them better understand and access the health care system. To broaden their reach, we created brochures in English, Chinese, Haitian-Creole, Portuguese and Spanish.
  • June 2009: The Consortium released Durable Medical Equipment: Challenges to Access for Children with Special Health Care Needs in Massachusetts. Between 2001 and 2008, the Consortium conducted several projects to better understand the process and challenges related to acquiring DME for children. This report describes these various projects in one comprehensive summary.
  • June 2009: The Consortium organized oral and written testimony for Senate Bill No. 800. Along with six other members of the Consortium, I testified before the Joint Committee on Public Health on June 9th to voice support for Senate Bill 800 and submitted the Consortium's DME report as part of my written testimony. Testifying with me were:
    • Erin Ward, parent and Family Facilitator for the Program to Enhance Relational and Communication Skills (PERCS) at the Institute for Professional and Ethical Practice-Children's Hospital Boston;
    • Ken MacDonald, DME Coordinator for Boston's Community Medical Group;
    • Elaine Rosen, Physical Therapy Supervisor and Equipment Clinic Coordinator at Franciscan's Hospital for Children;
    • Barbara Kneeland, parent and Care Coordinator at Children's Health Care;
    • Linda Landry, Senior Attorney at the Disability Law Center; and
    • Dr. Emily Davidson, Director of Inpatient Services for the Complex Care Service and Director of the Down Syndrome Program in the Developmental Medicine Center at Children's Hospital Boston and Instructor in Pediatrics at Harvard Medical School.

The Consortium's website will retain an Internet presence, serving as a legacy of the Consortium's work. We have also developed a final set of recommendations to inform and guide future program and policy development across the Commonwealth. It is our hope that the next generation of advocates will use these resources to further system improvement efforts for children with special health care needs and their families in Massachusetts. These recommendations and all of the resources mentioned above are available on our website.

In closing, all that the Consortium has accomplished over the last ten years has only been possible with the active participation, tireless efforts, and deep commitment of our members. Many have served on the Steering Committee, as Chairs of work groups and on project advisory committees; contributed countless hours to work group activities and research projects; and supported the Consortium staff in so many invaluable ways. On behalf of the Steering Committee and staff, thank you for always challenging our thinking, guiding our efforts, and supporting our work.

Sincerely,
Chris Fluet
Executive Director
Massachusetts Consortium for
Children with Special Health Care Needs