What's Inside the Toolkit?

• An Overview Booklet
• Tools to Help Identify Children with Special Health Care Needs
• Tools to Support Collaboration with Families, Providers, and State Title V Programs
• Tools to Assess a Health Plan's Capacity to Improve the Quality of Care for Children with Special Health Care Needs
• A Sampling of Best Practices

Click on any item in the Toolkit to view or download it. Publications are in PDF format unless otherwise noted. PDF documents require Adobe Acrobat Reader to view them.

Overview

Shared Responsibilities Overview: Identify...Collaborate...Improve
This 8-page booklet introduces the Toolkit and answers the questions:
Who are children with special health care needs?
Why should health plans identify this population?
How can health plans improve quality of care?

Identify...

Questionnaire for Identifying Children with Chronic Conditions - Revised (QuICCC-R)
R.E.K. Stein, L.J. Bauman and E.J. Silver, 1999; 10 pages
The QuICCC-R is a shortened form of the QuICCC, an interviewer or telephone-administered instrument for identifying children with a chronic or disabling condition. It consists of a 16-item subset of the original 39 question sequences for the QuICCC

The Children with Special Health Care Needs (CSHCN) Screener�
Foundation for Accountability - FACCT, 2002; (4 pages)
The CSHCN Screener© is a five item, parent survey-based tool that responds to the need for an efficient and flexible standardized method for identifying CSHCN. The survey can be administered in person or by telephone.The screener is specifically designed to reflect the federal Maternal and Child Health Bureau definition of children with special health care needs.

Summary Description of Clinical Risk Groups (CRGs)
National Association of Children's Hospitals and Related Institutions -NACHRI; 2000. (4 pages)
Clinical Risk Groups (CRG's) is a system that classifies individuals into mutually exclusive categories and assigns each person to a severity level if s/he has a chronic health condition using enrollment, and claims or other encounter level data. The commercial software for CRGs has been developed by 3M Health Information Systems.

Summary Description of NHP Algorithm
P. Linov, Neighborhood Health Plan, 2001. (3 pages)
This is an example of how one health plan has approached the development of an algorithm for identifying children with special health care needs using existing administrative data as one of many strategies for screening and identification.

Collaborate...

Family Survey
(Use the Word file version to add the name of the health plan); New England SERVE, 2002, (14 pages)
This self-administered questionnaire is designed as a mailed survey for pre-identified families caring for children with special health care needs. The tool is designed to collect family experiences of care and assess satisfaction in 7 domains: Primary Care, Mental Health, Specialty Care, Care Coordination, Inpatient & Emergency Care, Other Health & Therapeutic Services, Medical supplies or Equipment.

Primary Care Provider Survey
(Use the Word file version to add the name of the health plan); New England SERVE, 2002 (10 pages)
This self-administered questionnaire is designed as a mailed survey to pediatric primary care providers to collect their experiences and assess their satisfaction in providing care to children with special health care needs. It is intended to be used in conjunction with the Shared Responsibilities Family Survey. Findings from families and providers can be compared in the same seven domains described above.

Statement on Family Participation
New England SERVE, 2002 (1 page)
The Shared Responsibilities model encourages health plans to create meaningful ways for consumers to join in quality improvement. This statement was developed by a group of family advisors who served on a health plan advisory council for more than two years. It spells out their motivations, expectations and their hopes for the outcomes of their participation.

Sample Job Description - Family Advisor
New England SERVE, 2002. (1 page)
Some health plans are creating staff or consultant positions for family advisors to increase their internal capacity for building family-centered models for care. This job description provides specific roles and responsibilities for this type of position.

Criteria for Formatting Managed Care Reports for Primary Care Providers
Hood Center for Children & Families, 2002. (3 pages)
Health plans have access to information on health care utilization that can be shared in an organized way with primary care providers to assist them in both identifying and serving children with special health care needs in their practice. Patient cost profiles presented in a timely way can help initiate individualized care planning and enhanced coordination of care. This tool provides an example of the types of information being provided to primary care providers by two commercial health plans.

Contact Information for State Title V Programs for Children with Special Health Care Needs, Institute for Child Health Policy, September 2002 (6 pages)
Health plans are encouraged to use the expertise and information available through their state's Title V program for children with special health care needs. This list provides contact information for all 50 states, Puerto Rico & US Virgin Islands.

Improve

Organizational Readiness Measures
New England SERVE, 2002 (3 pages)
This tool is designed for health plans to assess their own organization's readiness to take on quality improvement Initiatives for children with special health care needs. Designed to be completed by health plan staff, questions are asked in five domains: Pediatric Leadership; Purchaser interest in children; Linkages to provider network; Polices & Practices, and Existing Collaborations.

Health Plan Checklist
New England SERVE, 2002 (4 pages)
This checklist offers health plans a detailed list of specific policies and operational procedures that can support quality care for children with special health care needs.

Best Practices

The Shared Responsibilities Model in Action: A Case Study at Neighborhood Health Plan

Pediatric Alliance for Coordinated Care: A Medical Home Demonstration Project

Children's Hospital and Regional Medical Center Seattle, Washington, Pediatric Palliative Care Project

Children's Choice of Michigan: Consumer Participation in Governance