From Data to Action (1998-2001)


Description

Family Voices is committed to ensuring that families build partnerships with professionals in systems that impact the health of their children with special health needs. Family Voices has found that initiating relationships with health plans and caregivers has been an essential basis for improving children's health. We want to learn more about the promising policies and practices that plan's are using to best serve children with special needs and their families, as well as issues that managed care organizations face in providing quality care for these children.

Interviews

To this end, Family Voices worked with parent leaders across the nation to conduct interviews with managed care organizations both to learn more about their services for children with special health care needs and to connect families with plans. A total of 41 interviews were completed in 2 phases - 17 between December 1998 and January 2000 and 24 between December 2000 and September 2001. The interviews were funded under the Data to Action project by the David and Lucile Packard Foundation.

Forums

Following the interviews, Family Voices parent leaders held forums in three areas of the country, California, Massachusetts and Tennessee, with state Title V and Medicaid staff, managed care officials, providers, families and other key stakeholders. The forums provided an opportunity for family leaders, staff of managed care plans, providers, state agency staff and advocates to come together:

  • to learn about the findings of the "Your Voice Counts" survey of the health care experiences of families of children with special health care needs,
  • to learn about findings from the managed care interviews, and
  • to discuss key issues for children with special needs in their area.

Forum participants considered local opportunities and developed plans and strategies for improving the quality of care for children with special health care needs in their area.


Materials

Background

"The case management team at one plan met routinely with schools and early intervention programs. The plan developed policies regarding rehabilitation, PT, and other services. Another plan employed a specific staff person to talk with the neonatalogist about children being discharged from the NICU who needed early intervention services." from "Beginning the Conversation"

  1. Questions and Answers: From Data to Action. Data to Action Q&A-pdf
    December 2001. A 2-page question & answer document that provides general information about the project's purpose and activities.
  2. Questions and Answers: Managed Care Interviews. MC Interviews Q&A-pdf
    December 2001. A 2-page question & answer document that provides information about the Managed Care Interviews, the first phase of this project.

Reports

  1. Beginning the Conversation: A Report of Family Voices' Interviews with Seventeen Managed Care Organizations (Revised). Beginning the Conversation-pdf
    November 2001. A 20-page report summarizing the major findings of the 17 interviews conducted between 1998 and 2000.
  2. Selected Highlights from Interviews with Managed Care Plans highlights-pdf
    January, 2002. A 4-page report listing selected highlights from all 41 interviews; these include interesting ideas, programs and policies and are presented as examples of good ideas that may be helpful to health plans and to parent leaders as they work to ensure quality health care for CSHCN.
  3. Parents Partnering with Managed Care Plans: A Discussion Guide on Services for Children with Special Health Care Needs. Partnering-pdf
    April, 2002. A 7-page pamphlet of topics & questions which can be used as a starting point for families and plans to share perspectives on services for CSHCN and to help guide plans and families in ways to partner together to improve services for this population.
  4. From Conversations to Connections: A Report on Parent Interviews with Managed Care Plans in Massachusetts about Children with Special Health Care Needs. MA Interviews-pdf
    October 2001. A 20-page report summarizing the major findings of the managed care interviews in Massachusetts.
  5. Preliminary Summary of Managed Care Interviews in California. CA Interviews-pdf
    March, 2001. A 3-page summary of the managed care interviews in California.

Tools & Methodology

  1. Original National Interview Questionnaire. Original Interview-pdf
    A 10 page document of questions used in the 17 interviews conducted between 1998 and 2000.
  2. Revised National Interview Questionnaire. Revised Interview-pdf
    A 10 page document of questions used in the 15 national interviews conducted between 2000 and 2001.
  3. Massachusetts Questionnaire. MA Interview-pdf
    A 14 page document of questions used in the 9 interviews conducted with managed care plans in Massachusetts, as part of the Family Advisor Initiative.

Project Contact

Nora Wells
Family Voices, Inc.
ERG
110 Hartwell Ave.
Lexington, MA 02421
Phone: (781) 674-7207
Fax: (781) 674-2851

You may also use our Online Contact Form to contact the Project Director.