The Family Partners Project: A survey ("Your Voice Counts") of families of children with special health care needs(completed project

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.
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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) "
  • 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.
  • 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.
  • 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.
  • 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.123
      fax: 617-572-2094
  • 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
  • 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.
  • 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
  • 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.
  • Children with Secondary Health Care CoverageSecondary Coverage (English)-html | Secondary Coverage (Spanish)-html
    • A 1 page fact sheet.
  • Satisfaction with Health PlansSatisfaction (English)-html | Satisfaction (Spanish)-html
    • A 1 page fact sheet.
  • Children with Behavioral and Mental Health ConditionsBehavioral (English)-html | Behavioral (Spanish)-html
    • A 1 page fact sheet.
  • The Effect of Cost Containment Strategies on Parental Rankings of Health Plan PerformanceCost Containment (English)-html | Cost Containment (Spanish)-html
    • A 1 page fact sheet.
  • Family ImpactsFamily Impacts (English)-html | Family Impacts (Spanish)-html
    • A 1 page fact sheet.
  • The Effect of the Child's Medicaid Enrollment upon Parental Rankings of Health Plan performance and Use of ServicesParental Ranking (English)-html | Parental Ranking (Spanish)-html
    • A 1 page fact sheet.
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California Reports

  • 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.
  • 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.
  • 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
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Tools and Methodology

  • Survey ToolSurvey-pdf | Survey-html
    • March 1998. The 32 page survey (89 questions) completed by families.
  • Study MethodologyMethodology (English)-html | Methodology (Spanish)-html
    • November 2000. A 2 page report summarizing the survey methodology.
  • Technical Report #1: The Survey MethodologyTech Report 1-pdf
    • April 2000. A 10 page report detailing the survey methodology.
  • Technical Report #2: Special Issues Regarding Survey QuestionsTech 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.
  • Technical Report #3: Procedures for Requesting Access to the Survey DataTech Report 3-pdf
    • A 4 page report detailing the procedures to allow access to survey data.
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Data

  • National Data FrequenciesCover-html | Table of Contents-html | Report-html
    • A 42 page report of data frequency tables based on all state data
  • 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:
    • Your Voice Counts State Data
      Arizona Kansas New Jersey Texas
      California Massachusetts New Mexico Utah
      Colorado Maryland New York Washington
      Delaware Minnesota Oregon Washington, DC
      Florida Missouri Tennessee 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
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En Espanol

  • ¿Qué dicen las familias acerca de la atención de salud para niños con necesidades especiales? Familias acerca-pdf
  • Las experiencias con los servicios de salud que han tenido las familias de niños con necesidades especiales: Resumen de los Resultados de la Encuesta Nacional Las experiencias-html
  • Comentarios de las familias de niños con necesidades especiales de atención de saludComentarios-pdf
  • NIÑOS CON COBERTURA SECUNDARIA DE ATENCIÓN DE SALUDCOBERTURA SECUNDARIA-html
  • GRADO DE SATISFACCIÓN CON LOS PLANES DE SALUDSATISFACCIÓN-html
  • NIÑOS CON PROBLEMAS DE COMPORTAMIENTO Y DE SALUD MENTALPROBLEMAS DE COMPORTAMIENTO-html
  • EL EFECTO DE LAS ESTRATEGIAS PARA EL CONTROL DE COSTOS SOBRE LA EVALUACIÓN REALIZADA POR LOS PADRES ACERCA DEL FUNCIONAMIENTO DE LOS PLANES DE SALUDCONTROL DE COSTOS-html
  • IMPACTO EN LAS FAMILIASIMPACTO-html
  • EL EFECTO QUE TIENE LA AFILIACIÓN DE LOS NIÑOS EN MEDICAID SOBRE LA EVALUACIÓN REALIZADA POR LOS PADRES ACERCA DEL FUNCIONAMIENTO DE LOS PLANES DE SALUD Y LA UTILIZACIÓN DE SERVICIOSEFECTO QUE TIENE LA AFILIACIÓN-html
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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.

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Project Highlights

NCFPP
Training and technical assistance for the development and expansion of Family-to-Family Health Information Centers (F2F HICs)

Bright Futures
Development of resources and materials for families and communities to promote and improve the health and well-being of all children

KASA
Development of a national grassroots network of youth with special needs and friends, speaking on their own behalf

Title V Toolbox
Collection of resources, materials, and models for family involvement from the FiPPS project organized in a searchable web repository


En Español

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