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Background Briefs  

Adequacy of Health Care Financing for Children with Special Health Care Needs in Massachusetts
This background brief presents an overview of health care financing for children with special health care needs in Massachusetts. It assesses the current status, opportunities and strategies for achieving adequate health care financing for this population.
January 2002

How Massachusetts Health Plans Make Coverage Decisions: A Report on Interviews with Nine Massachusetts Health Plans
The Consortium's Medical Coverage Decision-Making Work Group, conducted case-based interviews to clarify the processes health plans use in making coverage decisions.
February 2006

Projects & Presentations

Early Intervention and Third Party Payers in Massachusetts
Ron Benham of the Massachusetts Department of Public Health presents an overview of the Early Intervention system, and the evolution of its financing by both public and private payers.
June, 2005

Beginnings of the CommonHealth Program
The groundbreaking establishment of CommonHealth in the 1980's removed economic barriers for adults with disabilities to go to work. Nora Wells presents lessons learned from that success, providing inspiration for new advances in systems change.
June, 2005

Health Insurance Trends: Emerging Employer Strategies
Peter Kilmartin of Mercer Human Resource Consulting examines the emerging trend of "consumer-directed" health plans, and why they are attractive to employers amid rising health care costs.
February, 2005

Health Insurance Trends: Consumer-Driven Healthcare
Alexandra Schweitzer of Tufts Health Plan provides an overview of this emerging trend, using Tufts' Liberty Plan to illustrate the drive to bring a "consumer's mindset" to the use of health care services.
February, 2005

Medical Coverage Decision-Making in Massachusetts Health Plans
How do health plans make decisions about medical necessity, benefit exceptions or experimental procedures? And how can providers and families influence the process? The Medical Coverage Decision-Making Work Group designed a series of case studies to stimulate discussion in interviews with nine Massachusetts health plans. This is what they learned.
February, 2005

Employee Benefit Study for Children with Special Health Care Needs (2004)
The Employee Benefits Project is researching the many ways employer-sponsored programs can support families caring for CSHCN. This report highlights their findings, including the important opportunities within Work-Life and Employee Assistance Programs (EAP) for addressing families' needs. (Please see the publications section, below, for the project's final products.)
December, 2004

It Takes a Partnership: Supporting the Parents of Children with Special Health Care Needs
Employer benefits can go far beyond health insurance for families with CSHCN. LifeCare, Inc. is a work/life services vendor serving nearly 1,500 employers with 4.5 million employees. This presentation outlines a win-win formula for families and employers.
December, 2004

Massachusetts Medicaid Policy Institute (MMPI)
Robert Seifert, Director of Research & Policy at MMPI, offers background on this new, independent organization dedicated to public understanding and discussion of Massachusetts' Medicaid program.
October, 2004

The Alliance for Health Care Improvement: A Collaboration of Massachusetts Health Plan Medical Directors
This information sheet provides an overview of the purpose and activities of The Alliance for Health Care Improvement.
August 2004

Statement on Family Participation in Health Care Policy and Financing
A one-page statement on the unique contributions families can make to improve health care policy and financing, and why it is critical that they participate.
June 2003

Employee Benefits Study for Children with Special Health Care Needs (2003)
How do employee benefit structures help families of CSHCN? Where there are opportunities for improvement? This presentation outlines the findings of a study conducted by the Center for Child and Adolescent Health Policy at Massachusetts General Hospital for Children. (Please see the publications section, below, for the project's final products.)
April 2003

Coordinated Family-Focused Care (CFFC)
This presentation provides an overview of the CFFC program, launched in 2003 by the Massachusetts Behavioral Health Partnership for MassHealth clients. Using a blended funding model, it is a collaboration of state public health agencies, the state Department of Education, and the Parent/Professional Advocacy League (PAL).
April 2003

Publications & Surveys

Making the Case for Coverage: Tips for Helping Children and Families Get the Benefits They Need from Their Health Plans: A Guide for Clinicians & Advocates
New England SERVE and the Massachusetts Consortium for Children with Special Health Care Needs, 2007
Based on the findings of candid interviews with nine Massachusetts health plans, Making the Case for Coverage is both a down-to-earth guide to the process payers use to make decisions about coverage requests, and a handy tip sheet to help clinicians understand and play their role in that process more effectively.

New SSI Eligibility Guidelines for 2007
Gail Havelick, MA Department of Public Health
SSI eligibility guidelines effective January 1, 2007 include a cost of living adjustment that will increase the Federal Benefit Rate. This federal change will affect the monthly SSI benefit and the maximum income limits for
families with disabled or blind children in Massachusetts.

Companies Are Offering Assistance to Parents of Kids with Disabilities
Sue Shellenberger, The Wall Street Journal Online, October 14, 2005
"A code of silence has long kept parents of children with disabilities, from autism and Down syndrome to cerebral palsy and depression, from talking about their kids at work. Now, driven by growth in their numbers and in the cost of raising special-needs children, some of these parents are starting to 'come out' at work. And a handful of employers are stepping up to help, with support groups, informational meetings and insurance benefits."

Improving Coverage for Children with Special Health Care Needs
Rebecca Lipchitz, BU Today/Boston University, August 30, 2005
The recently established Catalyst Center is part of national initiative and will conduct research on how best to promote adequate financing for children and youth with special health care needs.

Building Funding Mechanisms to Support a System of Care
Issue Brief 04, Champions for Progress, March 2005

Children with Special Needs and the Workplace: A Guide for Employers
Center for Child and Health Policy, MassGeneral Hospital for Children, January 2005
Employees balancing the demands of work with the special health care needs of a child at home have often been overlooked when employers design benefit packages or work-life programs. This guide explores how many of the benefits employers already offer -- and many that can be provided at little or no cost to the employer -- can help maximize health care investments, improve productivity, and cultivate employee loyalty. Practical guidelines to help employers respond to employees' needs are included, along with a list of resources that can help an employer address develop responsive policies and programs.

Workplace Benefits for Families of Children with Special Needs: A Guide for Employees
Center for Child and Health Policy, MassGeneral Hospital for Children, January 2005
This guide is designed to help working parents think about employer-sponsored benefits and supports that can help them balance the special needs of their children with the demands of their work lives. It addresses health care benefits, employer advocacy, work-life and employee assistance programs, flexible spending accounts and more.

"Tea, Biscuits and Health Care Prioritizing"
Health Affairs, Vol 24, Issue 1, 234-239, Copyright © 2005 by Project HOPE
Medical coverage decision-making issues aren't restricted to this side of the pond. Marthe Gold, a family physician, takes us to England's Midlands, where local government representatives are seeking the public's input into whether the National Health Service should cover a costly new therapy.

Flexibility is Paramount for Parents Caring for a Disabled Child
Maggie Jackson, Boston Globe, June 6, 2004
A hidden but growing sector of the labor force, working parents of the country's 9 million children with special health needs have enormous challenges balancing exhausting home lives with job demands.

Telling Our Stories (2002, Massachusetts Consortium for CSHCN, Pamela Gossman, Editor)
These are the personal stories of thirty families who have benefited from public services in caring for their CSHCN. Collected through an informal survey, the stories cite specific programs and reveal the impact they have had on many aspects of family life.

Paying the Bills: Tips for Families on Financing Health Care for Children with Special Needs
New England SERVE, Second Edition, 1999
Paying the Bills was developed by parents who have children with special health needs. The parent authors have tapped their own experiences, as well as those of other families and professionals, in order to share information and strategies for getting payment for children's health care. Paying the Bills encourages families to ask questions, learn about the health financing system, and be persistent.


Catalyst Center: Improving Financing of Care for Children and Youth with Special Health Care Needs
The Catalyst Center is a national center dedicated to improving health care insurance and financing for children and youth with special health care needs (CYSHCN).

Health Care For All
Health Care For All is an independent, statewide consumer advocacy organization dedicated to making quality and affordable health care accessible to everyone in Massachusetts.

Massachusetts Medicaid Policy Institute (MMPI)
MMPI is an independent and nonpartisan source for information and analysis about the Massachusetts Medicaid program ("MassHealth").

Massachusetts Consortium for CSHCN Medical Coverage Decision-Making Work Group