Building Connections to Build Better Care

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


In This Issue

Legislative Briefing

State Senate Files Consortium's DME Bill

'Priorities for CYSHCN' Meeting Summary Available

Urge Your Legislator
to Attend

The Building Blocks of Childhood Success: 
A Legislative Briefing Event on Children's Issues

Monday, January 26
9:30-11:00 AM
State House

The Children's Health Access Coalition (CHAC) based at Health Care for All is organizing this event in concert with the legislative Joint Committee on Children, Families, and Persons With Disabilities. The Consortium will be one of many organizations represented. Get more information here, or find out who your legislators are and how to contact them to encourage them to attend.

Planning a Life:
Making the Most Out of High School

A Transition Conference
for Families

February 6 & 7 Worcester
April 3 & 4 Springfield area

Find conference details and registration information here.

Next Meeting
Date, Topic and Location TBA

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January, 2009

Dear Consortium Members and Friends,

The New Year has brought us some exciting news. I'm delighted to announce that the Consortium has just proposed its first piece of state legislation: a bill to examine the process of acquiring durable medical equipment (DME) for CSHCN. This is a truly important milestone for the Consortium. It is the culmination of a process that we only dreamt of when we began:

  • In 2005 one of our work groups identified a need, which was that the system for acquiring DME is overburdening and underserving families.
  • We held a Consortium meeting devoted to this topic, where we heard a cross-sector panel describe DME delivery and financing systems, then identified key challenges and ways the Consortium could pursue solutions.
  • Consortium staff designed and obtained funding for the DME Access Project: Tracking Durable Medical Equipment from Recommendation to Delivery for CSHCN.  A project advisory board was created, and research and data analysis were completed in 2008.
  • Findings from the study were used to draft the proposed legislation that has now been filed on Beacon Hill.

Ironically, the Consortium has reached this new level of achievement at the same time that we have had to suspend the activities of our two remaining work groups: Medical Home and Community-Based Systems of Care. It's a contradiction that is a sign of the times. While the Consortium's future has never been more precarious, our collaborative work has never been more needed.

I am pleased to report the following updates:

'Priorities' Meeting Summary Available

Medical home, family support programs and constituency-building were among the highest priorities identified last month at an invitational meeting of child health leaders in the state, co-hosted by the Consortium and the Massachusetts Department of Public Health. A summary of that meeting is now available on the Consortium's web site.

The documented discussion provides an excellent starting point for identifying our next steps. Given the Consortium's financial uncertainties, however, we've already acted on one of the recommendations made during the meeting: to develop a targeted, winnable, issue-driven campaign in which Consortium members and the larger CSHCN constituency can invest time, energy, and dollars.

We've identified durable medical equipment as the issue, and over the last couple of weeks have worked with state legislators to craft and submit a bill to explore why the process of obtaining DME for is so often problematic for families. (Read more about the bill, below.)

Our goal now is to leverage this success into securing financial support for the Consortium, so that we can continue to work on the priorities we've identified for children and families.

State Senate Files Consortium's DME Bill

"Resolved, that it is a priority of the commonwealth to ensure that children with special health care needs receive the appropriate necessary medical equipment in a timely manner..."

So begins the draft legislation that has been filed by State Senator Stephen Buoniconti (D) on Beacon Hill, based on a proposal from the Consortium. If passed, this legislation would establish a commission to recommend guidelines for private health insurers, the State Medicaid program and vendors to promptly process prescriptions for durable medical equipment for children. 

The commission would include representatives from the Department of Public Health, the Division of Medical Assistance, and the Joint Committee on Health Care Financing; a parent and a physician who care for children with special needs; the Executive Director of the Consortium, and other important stakeholders.

To date, primary sponsor Sen. Buoniconti has been joined by co-sponsors Sen. Fred Berry (D) and Rep. Louis Kafka (D). The current title of the bill, which has not yet been assigned a number, is "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."

You can help!  Ask your state legislators to co-sponsor the bill before the February 4 deadline. See the box at left to get contact information.

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