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Family Well-Being in Massachusetts: State Analysis of the National Survey of Children with Special Health Care Needs
The Center for Child and Adolescent Health Policy collaborated with members of the Consortium's Family Participation Work Group on the Massachusetts analysis of the National Survey of Children with Special Health Care Needs.

The project sought to understand the needs of families of children with special health care needs in Massachusetts, with a focus on two areas: financial impact and unmet need.

Researchers address the impact of race, poverty, severity of the child's condition and other characteristics on each focus area. They also examine how each relates to the Maternal and Child Health Bureau's key indicators of progress towards Healthy People 2010 national goal for service systems for CSHCN.

Using the CSHCN Data for Fun and Profit
Deborah Allen, of the Boston University School of Public Health, introduces the Data Resource Center for CYSHCN web site, and offers guidelines for researching and applying the national survey data.
October, 2004


Please see the Resource Center: Medical Home Partnerships page.


The Implementation of Chapter 171
A report by the Community-Based Systems of Care Work Group of the Massachusetts Consortium for Children with Special Health Care Needs to the Massachusetts Family to Family Health Information Center. June, 2008


Is Your Child Different?
This parent brochure was developed as part of the Opening Doors project with significant input from parents representing diverse and underserved populations. Their collective experience determined the brochure's key message ("Talk to other parents!"), its wording and format. The brochure is available in English, Chinese, Haitian-Creole, Portuguese and Spanish.
Also available are guidelines for Creating a Similar Brochure for Your Community.

Who's at the Table?  Why is it a Table Anyway?
Suzanne Bronheim, PhD of the National Center for Cultural Competence offers insight into "including many voices" in the work of improving systems of care.
July 2006

Many Voices: Cultural Perspectives on Health Care for Children with Special Health Care Needs
Rooshey Hasnain, EdD of the Institute for Community Inclusion introduces a panel discussion of the successes and challenges families and care providers experience when working with CSHCN from ethnically, racially, linguistically and economically diverse backgrounds.
July 2006

Policy Brief:  Cultural and Linguistic Competence in Family Supports
Bronheim, S., Goode, T., and Jones, W.  National Center for Cultural Competence, Georgetown University Center for Child and Human Development. 
Spring, 2006

Cultural Competence California Style
Brach C, Paez K, Fraser I. Agency for Healthcare Research and Quality Working Paper No. 06, February 2006
California health plans have led the country in implementing innovative practices to improve health care for diverse populations. This article reports on eight leading California plans’ cultural competence activities, and how they were influenced by California’s promulgation of cultural and linguistic competence standards for public insurance programs.

The Role of Cultural Competence in Family-Centered Care is included in the Definition and Principles of Family-Centered Care, issued by the Maternal and Child Health Bureau, Division of Services for Children with Special Health Care Needs, July 2005.

National Center for Cultural Competence (NCCC)
Georgetown University Center for Child and Human Development, University Center for Excellence in Developmental Disabilities


The DME Access Project: Tracking Durable Medical Equipment from Recommendation to Delivery for Children with Special Health Care Needs
The Consortium tracked families' experiences as part of its research into the often cumbersome process of acquiring needed DME for CSHCN. Findings were used to draft legislation that was then filed on Beacon Hill. See also the project's parent training presentation and final report.

Durable Medical Equipment for Children with Special Health Care Needs: A Family Perspective
Erin Ward, mother of a child with special health care needs and Family Initiatives Coordinator for the Center for Families at Children’s Hospital Boston, outlines how the system for accessing DME affects families caring for children with special health care needs.
December, 2005

Access to DME: Summary of Challenges and Opportunities
This document summarizes small group discussions on access to DME, in which Consortium members began to identify both primary challenges and possible strategies for intervention by the Consortium.
December, 2005

Access to DME: A Conceptual Framework
This visual illustration of the interplay among the various challenges to accessing DME for CSHCN is based on the outcomes of the same small group discussions as the summary, above.
December, 2005

The Wheelchair Recycler
The Wheelchair Recycler in Marlborough, MA refurbishes and distributes pre-owned power wheelchairs and electric scooters at a very low cost to people who either do not have health insurance or do not qualify for equipment. Parts and repair service are also available.  


From New England SERVE's Sharing Responsibilities Toolkit: Tools for Improving Quality of Care for Children with Special Health Care Needs:

The Children with Special Health Care Needs (CSHCN) Screener©
The CSHCN Screener© is a five item, parent survey-based tool that offers an efficient and flexible standardized method for identifying CSHCN.
Foundation for Accountability - FACCT, 2002

Summary Description of NHP Algorithm
This is an example of how one health plan has approached the development of a systemfor identifying children with special health care needs using existing administrative data as one of many strategies for screening and identification.

P. Linov, Neighborhood Health Plan, 2001

Summary of Utilization Indicator in NHP Algorithm for Identification of Children with Special Health Care Needs
This addendum to the algorithm is a recent update to the original.
Pamela Linov, Neighborhood Health Plan

Summary Description of Clinical Risk Groups (CRGs)
Clinical Risk Groups (CRG's) classify individuals into mutually exclusive categories and assign severity levels for chronic health conditions using enrollment, and claims or other encounter level data. The commercial software for CRGs was developed by 3M Health Information Systems.
National Association of Children's Hospitals and Related Institutions -NACHRI; 2000

Questionnaire for Identifying Children with Chronic Conditions - Revised (QuICCC-R)
This shortened form of the QuICCC is a 16-item subset of the original 39 questions, and is used for identifying children with a chronic or disabling condition.
R.E.K. Stein, L.J. Bauman and E.J. Silver, 1999


The Parents' How-To Guide to Children's Mental Health Services in Massachusetts
The Guide takes families through the state's mental health system step by step, from deciding if a child needs care to getting specific services. The updated edition includes a new chapter on "aging out" of child services. See also the links to additional resources for both families and health professionals.
Boston Bar Association with Children's Hospital Boston
Updated edition, April 2007

Rosie D. vs. Romney: An Overview
One-page overview of the class action lawsuit on behalf of children with psychiatric disabilities and its landmark ruling in January, 2006.
From the Parent/Professional Advocacy League
March, 2007

Children's Mental Health: The Time is Now
Powerpoint presentation outlining the Children's Mental Health Campaign, a collaboration of the Massachusetts Society for the Prevention of Cruelty to Children, Children’s Hospital Boston, and Health Care for All.  (Visit the MSPCC site for more information and to download a copy of the Campaign's 20-page report.)
Karen Darcy, RNC, MSN, Director of Mental Health Advocacy, Children's Hospital Boston
March, 2007

Thematic Summary: An Act Improving Behavioral Health Services for Children in the Commonwealth
Thematic summary of proposed legislation sponsored by Senator Tolman and Representative Balser. See also a sample letter and phone script that can be used to support this legislation.
Children’s Mental Health Campaign
March, 2007

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. It is a collaboration of state public health agencies, the state Department of Education, and the Parent/Professional Advocacy League (PAL).
April 2003


Oral Health Resource Bulletin, Volume XIII
National Maternal and Child Oral Health Resource Center
December, 2005.

Guide to Children's Dental Care in Medicaid
The Centers for Medicare and Medicaid Services (CMS), October, 2004

Oral Health Conditions in Children with Special Needs: A Guide for Health Care Providers
This fact sheet provides full color photographs of oral conditions, each accompanied by a paragraph of descriptive text and a recommendation for health care providers who encounter the condition.
Reprinted by the National Oral Health Information Clearinghouse, National Institute of Dental and Craniofacial Research, March 2004

An Introduction to Practical Oral Care for People with Developmental Disabilities
This fact sheet presents an overview of the Practical Oral Care series from the National Institute of Dental and Craniofacial Research (NIDCR) at the National Institues of Health.

Booklets in the series include:

Continuing Education: Practical Oral Care for People with Developmental Disabilities

Dental Care Every Day: A Caregiver's Guide

Practical Oral Care for People with Autism

Practical Oral Care for People with Cerebral Palsy

Practical Oral Care for People with Down Syndrome

Practical Oral Care for People with Mental Retardation

Wheelchair Transfer: A Health Care Provider's Guide

Order these and other publications through the National Oral Health Information Clearinghouse


American Academy of Pediatric Dentistry

National Maternal and Child Oral Health Resource Center

National Institute of Dental and Craniofacial Research


Getting a Break: A Roadmap to Respite Care for Massachusetts Families of Children with Special Health Care Needs
Community-Based Systems of Care Work Group of the Massachusetts Consortium for Children with Special Health Care Needs in collaboration with the Massachusetts Family-to-Family Health Information Center, 2008. PLEASE NOTE: Brochure is designed to be printed on legal-size paper.
This brochure features a grid that delineates publicly-funded respite programs in Massachusetts and their eligibility requirements. Information was provided by five state agencies: the Departments of Public Health, Mental Retardation, Mental Health, and Children and Families; and the Massachusetts Commission for the Blind. Also included are parents' tips for other parents on finding respite care providers and making the most of limited respite resources.

Central Massachusetts Respite Project (CMRP)
The objective of the CMRP is to provide much needed respite services to eligible families in the Central Region, while expanding opportunities for �hands-on� training for respite providers. The CMRP operates as a collaboration of the Seven Hills Foundation, UMASS Memorial Children's Medical Center, and Quinsigamond Community College. See the flyer or presentation slides.


Background and Policy Recommendations: Massachusetts Consortium for Children with Special Health Care Needs
The Consortium's policy recommendations synthesize the outcomes of its recent research and project activities. Upon its closing in June 2009, the Consortium offers this document in the hope that the next generation of advocates will use the resources it has developed to further system improvement efforts for children with special health care needs and their families in Massachusetts.

Leadership Opportunities to Improve Systems of Care
The LEND programs at both the Shriver Center and the Institute for Community Inclusion have been designed to enhance the knowledge and skills of future leaders and clinicians in interdisciplinary, family-centered and culturally competent care of children with neurodevelopmental disabilities.
Visit the Shriver Center's LEND Web site
or see a Powerpoint presentation made to the Consortium in March, 2006.

Partnerships and Collaborations: Building Connections to Build Better Care
Using the Consortium as a model, Susan Epstein presents the ins and outs of partnership building: how to create partnerships, how to sustain them, and why they're critical to improving systems of care.
November, 2005

How Innovations Spread
Charles Homer MD of the National Initiative for Children's Health Care Quality provides a roadmap for spreading change.
June, 2005

Thinking about How & When Systems Change: The Role of Partnerships
Marji Erickson Warfield of the Heller School for Social Policy and Management at Brandeis gives an overview of the key components of systems change.
June, 2004