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

National Performance
Objectives Project

Family Professional
Partnership Publications

Chapter 171
Implementation Report

Transition to Adulthood Training Curriculum

Medical Home

Respite Care

Opening Doors

Next Meeting

January, 2009
Date, Topic and Location TBA

Issue Alerts

In addition to the
Consortium's meeting
invitations and monthly
e-newsletter, you'll
soon begin receiving
occasional issue
alerts. These brief e-mail
messages will let you know about timely
actions you can take to
help improve the lives
of children and families
in Massachusetts.

In the Spotlight:
Judith S. Palfrey

Judith Palfrey, MD (Photo: AAP)

The American Academy
of Pediatrics (AAP) has elected Judith S. Palfrey, MD, FAAP, as its new
Pediatrician, educator,
researcher, and advocate for children with special health care needs, Dr. Palfrey has long been a
supporter of the Consortium. We wish
her well in her new

Photo: AAP

'Cameron's Arc'

Cameron's Arc (AAP)

Cameron's Arc:
Creating a Full Life
the winner of the 2008
International Health
and Medical Media
Award in the category
of programs dealing
with coping issues.
Designed to train health care professionals in
providing palliative care
to children and their families, Cameron's Arc was developed jointly by the American Academy
of Pediatrics National Center of Medical Home
Initiatives for Children
with Special Needs and Carepoints. Consortium members may recall screening the DVD at last year's June meeting.

Photo: AAP

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October, 2008

Dear Consortium Members and Friends,

Welcome to the Consortium Outreach, a new, monthly e-newsletter to keep you updated on all the Consortium's activities.

We announced last spring that big things were happening. The Consortium was about to become independent from New England SERVE, I had just assumed the role of Executive Director, and we were facing an uncertain future as longstanding federal support was no longer available to us.

Four months later, big things are still happening. We've reached important milestones in our collaborative projects, released new publications, and begun a critical new partnership with the Massachusetts Department of Public Health.

As for the shift in the Consortium's funding structure, we unfortunately have had to discontinue the activities of the Family-Professional Partners Institute. It is always regrettable when a successful program like the Institute ends due to a lack of funding, especially when it has made such a clear and positive impact. The individuals and organizations who created the Institute and participated in its partnerships have much to be proud of.

The Consortium, of course, is far from alone in having to adapt in the current economy. What's important is that we are continuing to move forward, working to improve the system of care for children and families.

This e-newsletter is a case in point. Over the past year or so, meetings of our large group have had to become less frequent. To maintain connections with our members between meetings -- and to make the best use of our resources -- we plan to take advantage of communications technology in new ways. The Consortium Outreach is a first step. (More information in the sidebar -- and in the months ahead.)

In the meantime, I am pleased to report the following updates on Consortium projects:

CSHCN National Performance Objectives
The MA Department of Public Health has tapped the Consortium to collaborate on its CSHCN National Performance Objectives Project. We're working together to strategize ways to grow the system of care for CSHCN, close the gaps and raise public and legislative awareness of the needs of this population.

Family-Professional Partnership Publications
In its role as a partnership broker, the Family-Professional Partners Institute facilitated 16 successful partnerships, demonstrating a range of sustainable roles for family members in a range of organizations.

Structure and Spark!The Power of Partnership

Structure & Spark! Building Family Professional Partnerships to Improve Care for Children with Special Health Needs is a 100+ page publication that outlines the Institute's model, describes its activities as a partnership broker, and incorporates the best knowledge gained from its experience.

The Power of Partnership: Sixteen Family-Professional Partnerships That Are Making a Difference for Children with Special Health Care Needs describes the Institute's 16 partnerships in a concise booklet.

Click on publications for more information and free downloads.

Chapter 171 Implementation Report
The Community-Based Systems of Care Work Group (chaired by Kathy Ryan, Carter Development Center) recently completed a report on the implementation of Chapter 171. This is an act of the state legislature that requires seven public agencies to obtain substantial consumer input about the needs of people with disabilities. The report was prepared by the Work Group for Massachusetts' Family-to-Family Health Information Center.

Transition to Adulthood Training Curriculum
After training nearly 100 care coordinators, case managers, social workers and others who work with youth with special health care needs (YSHCN) and their families, the Consortium released its Make Things Happen curriculum. Make Things Happen is designed to help YSHCN prepare for adult life. The curriculum and other materials are available on the Consortium's web site.

Medical Home
The Medical Home Work Group (chaired by Dr. Beverly Nazarian, UMass Medical Center) has turned its attention to a critical issue in the implementation of medical homes: reimbursement. The group is identifying the clinical activities of the pediatric medical home, and beginning to work with two pediatric practices -- one in a hospital setting, the other community-based -- to learn how these activities are currently reimbursed.

Respite Care
The Community-Based Systems of Care Work Group is researching respite care services for families of children with special health care needs. The findings will be used to create a resource to help Massachusetts families access respite care.

Opening Doors
Working with a multicultural focus group of parents of CSHCN, the Consortium is developing materials for Opening Doors for Children and Youth with Disabilities and Special Health Care Needs, a collaboration of Children's Hospital Boston and the Institute for Community Inclusion at UMass Boston.


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