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The National Survey for Children with Special Health Care Needs: Knowing How Many is Not Enough PowerPoint PPT Presentation

The National Survey for Children with Special Health Care Needs: Knowing How Many is Not Enough Bonnie Strickland April 23, 2002 National Agenda for CSHCN Grew out of work begun in late 70’s Articulated a new model of care: Partnership with families Community-based care

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The National Survey for Children with Special Health Care Needs: Knowing How Many is Not Enough

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The National Survey for Children with Special Health Care Needs: Knowing How Many is Not Enough

Bonnie Strickland

April 23, 2002


National Agenda for CSHCN

  • Grew out of work begun in late 70’s

  • Articulated a new model of care:

    • Partnership with families

    • Community-based care

    • Comprehensive services

    • Available and accessible

  • Serve a broad population of children


Definition of CSHCN

  • “Children with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”


Title V Legislative Requirements

  • Provide rehabilitative services for children under 16 receiving SSI if medical assistance is not provided through Medicaid

  • Provide and promote family-centered, community-based coordinated care

  • Facilitate the development of community-based systems of services


Healthy People 2010

  • Increase the proportion of States and territories that have service systems for children with special health care needs (#16-23)

  • Increase the proportion of children with special health care needs who have access to a medical home (#16-22)


National Survey on CSHCN

  • MCHB Partnership with National Center for Health Statistics, using the sampling frame for the National Immunization Survey,

  • Identifies 750 CSHCN per state by random digit dialing telephone survey (approximately 40,000 children with special health care needs)

  • Data available December 2002,

  • Repeated every 4-5 years.


National Survey on CSHCN

  • Purpose:

    • Establish uniform state, regional and national prevalence estimates for CSHCN under 18 yrs.

    • Provide state, regional, and national data for determining the impact of the system on children with special health care needs and their families,


National Survey on CSHCN

  • Additional Purpose:

    • Provide estimates of health care coverage for all children, and

    • Provide information on low income, uninsured families regarding health status and Medicaid/SCHIP


National Survey on CSHCN

  • Potential uses:

    • Reporting on Title V Block Grant performance measures,

    • State and national needs assessment,

    • Reporting on Healthy People 2010,

    • Advocacy and research.


National Survey on CSHCN

  • Identification Tool:

    • Children with Special Health Care Needs Module developed by the Foundation for Accountability (FACCT),

    • Non-categorical screening tool, does not generate a medical diagnosis,

    • Identification based on limitations of daily activities, increased need for or use of services, medicine, special therapies or services.


National Survey on CSHCN

  • Interview on System Impact:

    • demographics

    • health and functional status

    • health insurance coverage

    • access to care

    • service utilization

    • care coordination

    • satisfaction

    • impact on family


Health and Functional Status

  • Extent to which condition limits ability to do things other children can do,

  • Overall severity and stability of condition,

  • IFSP or IEP,

  • School days missed.


Access to Care

  • Usual source of care (location and provider),

  • Reasons for delay in obtaining needed health care,

  • Difficulty in obtaining specific services.


Care Coordination

  • Availability,

  • Source of care coordination,

  • Coordination within health,

  • Coordination with community services,

  • Services from Title V.


Satisfaction with Care

  • Time spent with child/family,

  • Listening and partnership,

  • Respect for values and customs,

  • Adequacy of information.


Health Insurance Coverage

  • Source of insurance,

  • Gaps in insurance coverage,

  • Duration of uninsurance.


Adequacy of Health Care Coverage

  • Adequacy of benefits,

  • Out-of-pocket costs,

  • Access to health care providers,

  • Adequacy of information,

  • Overall satisfaction.


Impact on Family

  • Out-of-pocket expenses,

  • Health care provided by family,

  • Time spent providing and coordinating care,

  • Financial and employment impact.


Brief Interview for Children Without Special Needs

  • Health Insurance Coverage

  • Demographics


Medicaid and SCHIP

  • All low income and uninsured receive Medicaid/SCHIP section plus a subsection of the CSHCN questions:

    • Main reason for no health insurance

    • Awareness of Medicaid/SCHIP

    • Application, eligibility, and enrollment information,

    • Reasons for not wanting to enroll.


Update: Expanded Data Sources

  • Expansion Activities During Past Year:

    • Screener and selected interview items included in other State and national measures (Medical Expenditures Panel Survey)

    • Screener and selected interview items included in the Health Plan Employer Data and Information Set (HEDIS 2002), the national quality monitoring system for managed care organizations.


Research Questions

  • Research Questions:

    • Prevalence issues: What is the prevalence? How does it vary by age, sex, ethnicity, income, etc.

    • Health Needs: Are they being met? To what extent do unmet needs exist?

    • Insurance: What is the level, type, and how well does it work?


Research Questions

  • Impact on Family: Out of pocket expenses, employment, time spent on care coordination,

  • Care Coordination: What proportion receive it? How satisfied are families with these services?

  • Quality Care: How do parents perceive the quality of primary, specialty, and ancillary care? What factors are associated with better quality, more comprehensive care?


Research Questions

  • Medical Home: What proportion of children have access to a medical home,

  • Other Programs: How many children receive services from Title V, Early Intervention, or Special Education.


Challenges/Next Steps

  • Develop strategies for measuring early and continuous screening,

  • Develop a mechanism to survey youth with special health care 18 years and older,

  • Develop strategies for identifying children “at-risk”,

  • Develop strategies for identifying individual children and youth.


More Information

  • Web sites:

    • www.mchdata.net

    • www.cdc.gov/nchs/slaits.htm

    • www.facct.org/cahmi/html


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