The Family Partners Project: The Health Care Experiences of Families of Children with Special Health Care Needs (1998-2002)


Description

In a collaborative partnership between Family Voices and the Heller School at Brandeis University, this project designed and conducted a survey called ‘Your Voice Counts!' where 2,220 families in 20 states responded about the health care experiences of families with children with special health care needs during 1998-1999. Using the same questionnaire, Family Voices and the ABT Associates also conducted the survey in four counties and two rural areas in California in 1998. An additional 957 California families responded.

Materials

Please read Data Use Guidelines before using any materials from this project.

National Reports

"Many parents gave advice about how to look at a plan, and how to choose: ...Watch out for pre-existing consditions clauses...How are they about referrals to specialists...How generous are they with mental health benefits, etc." from "What Do Families Say About Health Care for Children with Special Health Care Needs? (Your Voice Counts!! Survey) "

  1. What Do Families Say About Health Care for Children with Special Health Care Needs? Your Voice Counts!! The Family Partners Project Report to Families. What Do Families Say (English)-pdf | What Do Families Say (Spanish)-pdf April 2000 2nd edition. A 16 page report summarizing the major findings, written for families.
  2. The Health Care Experiences of Families of Children with Special Health Care Needs: Summary Report of Findings from a National Survey.Summary (Spanish)-html | Summary (English)-pdf February 2000. A 2 page report of highlights of the major findings.
  3. POLICY BRIEF: The Importance of Public Health Coverage to Families of Children with Special Health Care Needs.Brief-pdf April 2002. A 2 page report comparing findings from the Your Voice Counts Survey.
  4. Navigating Systems of Care: Results From a National Survey of Families of Children with Special Health Care Needs. Published in Children's Services: Social Policy, Research, and Practice, Volume 4, Number 4, 2001. Authors: Marty Wyngaarden Krauss, Nora Wells, Stephen Gulley, and Betsy Anderson. Reprints available upon request from:

    Nora Wells, Director of Research Activities
    Family Voices @ Federation for Children with Special Needs
    1135 Tremont Street
    Boston, MA 02120
    email: nwells@familyvoices.org
    phone: 617-236-7210 x.1210
    fax: 617-572-2094

  5. Access to Rehabilitation Services and Technology for Children with Special Health Care Needs: Findings and Recommendations for Families and Providers. Access-pdf Author: Margaret E. O'Neill, PhD, PT, MPH. September, 2001. An executive summary of an 84-page report on a research project using the survey data. For more information on the report, please contact Margaret O'Neill at moneil@drexel.edu
  6. Comments From Families Children with Special Health Care Needs.Comments (English)-pdf | Comments (Spanish)-pdf February 2000. A 17 page report of direct quotes from families in response to the open-ended questions in the survey.
  7. The Family Partners Project: Report on a National Survey of the Health Care Experiences of Families of Children with Special Health Care Needs. October 2000. A 111 page report of all findings. Special order. Available upon request from:

    Nora Wells, Director of Research Activities
    Family Voices @ Federation for Children with Special Needs
    1135 Tremont Street
    Boston, MA 02120
    email: nwells@familyvoices.org
    phone: 617-236-7210 x.123
    fax: 617-572-2094

  8. The Family Partners Project: The Health Care Experiences of Families of Children with Special Health Care Needs: Summary of Findings and Conclusions.Findings-pdf February 2000. An 8 page report of the major findings and conclusions.
  9. Children with Secondary Health Care Coverage Secondary Coverage (English)-html | Secondary Coverage (Spanish)-html A 1 page fact sheet.
  10. Satisfaction with Health Plans Satisfaction (English)-html | Satisfaction (Spanish)-html A 1 page fact sheet.
  11. Children with Behavioral and Mental Health Conditions Behavioral (English)-html | Behavioral (Spanish)-html A 1 page fact sheet.
  12. The Effect of Cost Containment Strategies on Parental Rankings of Health Plan Performance Cost Containment (English)-html | Cost Containment (Spanish)-html A 1 page fact sheet.
  13. Family Impacts Family Impacts (English)-html | Family Impacts (Spanish)-html A 1 page fact sheet.
  14. The Effect of the Child's Medicaid Enrollment upon Parental Rankings of Health Plan performance and Use of Services Parental Ranking (English)-html | Parental Ranking (Spanish)-html A 1 page fact sheet.

California Reports

  1. What Do Families Say About Health Care for Children with Special Health Care Needs in California? Your Voice Counts!! Family Survey report to California Participants Family Report (English)-pdf | Family Report (Spanish)-pdf May 2000. A 16 page report summarizing the major findings, written for families.
  2. The Health Care Experiences of Families of Children with Special Health Care Needs: Summary of California Survey Results Summary (English)-pdf | Summary (Spanish)-pdf February 2000. A 2 page report of highlights of the major findings.
  3. California Survey of the Health Care Experiences of Families of Children with Special Needs September 2000, 86 Pages. Special order. Available upon request from:

    Nora Wells, Director of Research Activities
    Family Voices @ Federation for Children with Special Needs
    1135 Tremont Street
    Boston, MA 02120
    email: nwells@familyvoices.org
    phone: 617-236-7210 x.123
    fax: 617-572-2094

Tools and Methodology

  1. Survey Tool Survey-pdf March 1998. The 32 page survey (89 questions) completed by families.
  2. Study Methodology November 2000. A 2 page report summarizing the survey methodology.
  3. Technical Report #1: The Survey Methodology Tech Report 1-pdf April 2000. A 10 page report detailing the survey methodology.
  4. Technical Report #2: Special Issues Regarding Survey Questions Tech Report 2-pdf April 2000. A 7 page report of suggestions regarding the questions in the survey instrument that should be considered by others interested in using some or all of our questions.
  5. Technical Report #3: Procedures for Requesting Access to the Survey Data Tech Report 3-pdf A 4 page report detailing the procedures to allow access to survey data.

Data

  1. National Data Frequencies A 42 page report of data frequency tables based on all state data
  2. Results From YOUR VOICE COUNTS: The Survey of Health Care Experiences of Families of Children with Special Health Care Needs Qualitative and quantitative information gleaned from the national survey data. State-specific reports are available for the following states:

    Arizona, California, Colorado, Delaware, Florida, Kansas, Maryland, Massachusetts, Minnesota, Missouri, New Jersey, New Mexico, New York, Oregon, Tennessee, Texas, Utah, Washington, Washington, DC, Wisconsin

    Available in hardcopy upon request from:

    Nora Wells, Director of Research Activities
    Family Voices @ Federation for Children with Special Needs
    1135 Tremont Street
    Boston, MA 02120
    email: nwells@familyvoices.org
    phone: 617-236-7210 x.123
    fax: 617-572-2094

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