The National Survey of Children with Special Health Care Needs

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The Washington State Experience with CSHCN Data
Maria Nardella, Manager CSHCN ProgramWashington
State Department of Health February 29, 2004
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Todays Purpose

• Overview of Washington State CSHCN Program
• Describe Washingtons CSHCN Road Show
• Share what was learned from the Road Show process

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Mission of the CSHCN Program

• Promote integrated systems of care that assure
  the population of children with special health
  care needs the opportunity to achieve the
  healthiest life possible and develop to their
  fullest potential.

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Health Department
School
Behavioral Psych
Family and Child
Birth to Three
Physician
Therapist
Hospital
Nutritionist
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Principles of the Program

• Families are the core of the health services
  system
• The community is the center of service provision
• Systems of care are comprehensive
• Systems of care are culturally competent

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? MEET THE CSHCN STAFF ?
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Center for Children with Special Needs (CCSN)

• State Contract Purpose to improve statewide
  systems of care for children with special health
  care needs

 
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Washingtons CSHCN Road Show

• Developed an evolving Power Point
• Presented at CSHCN stakeholder meetings
• Asked targeted MCH 5 Year Needs Assessment
  questions
• Engaged in dialogue with stakeholders
• Developed summary and follow-up

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Stakeholder Groups

• 4 CSHCN Regions
• Neurodevelopmental Center Directors
• WISE Grant Steering Committee

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Washington State CSHCN Regions
Pend Oreille
Whatcom
Okanogan
San Juan
Ferry
Skagit
Stevens
Island
Clallam
Snohomish
Chelan
Douglas
Spokane
Jefferson
Lincoln
King
Kitsap
Grays Harbor
Mason
Grant
Kittitas
Adams
Whitman
Pierce
Thurston
Pacific
Lewis
Garfield
Franklin
Yakima
Columbia
Cowlitz
Benton
Wahkiakum
Asotin
Skamania
Walla Walla
Key
Klickitat
Clark
Northwest
Southwest
Central
East
October 2000
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Washington Integrated Services Enhancement Grant
for Children with Special Health Care Needs

• WISE
• For
• CSHCN

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CSHCN Family Involvement
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CSHCN Road Show Content

• Needs Assessment overview
• Current Washington State data sources
• National CSHCN Survey data for WA
• MCH Needs Assessment Questions

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The CSHCN Road Show Planning for Washingtons
Children With Special Health Care Needs

• January 26, 2004
• Presentation to NDC Directors
• CSHCN Program

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Needs Assessment is part of a bigger process
Needs Assessment

• What do we know?
• What dont we know?
• Where do we go from here?

Evaluation
Strategies
Monitoring
Plan
Implementation
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Goals for Washingtons MCH 5 Year Needs Assessment

• Meet MCH Block Grant requirements
• Make MCHB process valuable work for
  Washington--not just an exercise
• Create a process that is systematic and ongoing
• Involve stakeholders
• Avoid duplication of efforts

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CSHCN Priorities Identified in Previous MCH 5
Year Needs Assessment

• Lack of coordination of services
• Lack of routine sources of data
• Health Care Financing issues
• Inadequacy of Quality Assurance for CSHCN
• Valuing families as partners and culturally
  competent care
• Information resources for families, providers,
  health plans and others
• Availability of support services for families

?
?
?
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Defining CSHCN
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MCHB Definition of CSHCN

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

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Available Data Children with Special Health Care
Needs

• County Level
• Child Health Intake Form (CHIF)
• Comprehensive Hospital Abstract Reporting System
  (CHARS)
• Birth Events Record Database (BERD)
• Department of Social Health Services (DSHS)
  Service Use Data
• Office of the Superintendent of Public
  Instruction (OSPI)Special Education Services
  Data
• Healthy Youth Survey (HYS)

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Available Data Children with Special Health Care
Needs

• State Level
• Aggregate of all the County level data sources
• MedicaidConsumer Assessment of Health Plans
  Survey (CAHPS)
• Behavioral Risk Factor Surveillance System
  (BRFSS)
• Healthy Youth Survey (HYS)
• National CSHCN Survey for Washington State

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• The National Survey of Children with Special
  Health Care Needs

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Prevalence of Children with Special Health Care
Needs Households
Source National (n196,888) WA (n3517)
Household files.
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Prevalence of Children with Special Health Care
Needs Persons
95CI 0.52
95CI 0.11
Source National (n372,174) WA (n6629)
Screener files.
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Needs Assessment Questions

• Do the examples from the National CSHCN Survey
  reflect the needs you see in the population you
  serve?
• What is missing?
• What other data sources on CSHCN are you aware
  of?
• How will your agency use the CSHCN data results?

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Feedback Summary

• Additional indicators were recommended for MCH 5
  Year Needs Assessment
• Confirmation of priorities identified in previous
  needs assessment is applicable to current needs
  of population
• Want more on how representative results are of
  both rural and urban populations
• Needs of population not recognized in National
  CSHCN survey were identified

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More Feedback

• Confirmed that Washington State data from
  National CSHCN Survey is useful to our
  stakeholders
• Input on additional data analyses was received
• Input on format of a future report was secured
• Identified ways to further involve stakeholders
  in MCH Five Year Needs Assessment

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Next Steps

• Feedback will be woven into Integrated MCH 5 YR
  Needs Assessment approach
• CSHCN Road show will be used at a Family
  Leadership Institute this fall
• CSHCN Survey Data already being integrated into
  state local reports (MCH Assessment Data
  Report, Health of Washington State, future
  Washington State CSHCN Data Book)
• Input on development of questions for the next
  National CSHCN survey

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Contacts

• Maria Nardella, Manager CSHCN Program,
  maria.nardella_at_doh.wa.gov
• Stacey De Fries, Assessment Coordinator, CSHCN
  Program, stacey.de_fries_at_doh.wa.gov
• Ginny Sharp, Research Associate, Center for
  Children with Special Needs, CHRMC,
  ginny.sharp_at_seattlechildrens.org

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