Achieving and Measuring Success for Children with Special Health Care Needs

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Partnering to Achieve Community Service Systems
for Children with Special Health Care Needs
Merle McPherson, MD, MPH New Leaders Orientation
Meeting October 2003
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History (1)

• 20-year history of
• Development
• Demonstration
• Partial implementation in every state
• Moving to a comprehensive, strength-based,
  family-centered approach
• Key partnerships with
• Health professionals
• Families
• States and communities

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History (2)

• Surgeon Generals Conferences
• 1982
• 1988
• Title Vs revised legislative mandate (Omnibus
  Budget Reconciliation Act of 1989) (OBRA 89)
• Provide and promote family-centered,
  community-based coordinated care
• Facilitate the development of community-based
  systems of services
• Healthy People 2000 and 2010
• Broad definition of CSHCN
• Published in Pediatrics (1998)

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Current Status (1)

• Partial implementation in all States
• State and national data released from first
  National CSHCN survey
• Next survey being planned
• Performance measures for States on 6 core
  outcomes in place

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Current Status (2)

• Incorporated as part of the Presidents New
  Freedom Initiative (NFI)
• Delivering on the Promise (March 2002 status
  report on NFI) charges HRSA with
• developing and implementing plan to achieve
  appropriate community-based systems for children
  and youth with special health care needs and
  their families.

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Integrated Services Branch Program (1)

• Family Professional Partnership -Desired National
  Status by 2005
• Family-professional partnerships and cultural
  competence are key elements in 100 of SPRANS
  grants.
• 50 of Family Voices State Coordinators and 100
  of the Family-to-Family Health Information and
  Education Centers (F2F) provide data on family
  needs, consistent with National Survey.
• F2F Centers implemented in 6 more States.
• Family Voices Cultural Competence/Outreach Plan
  is fully implemented.

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Integrated Services Branch Program (2)

• Medical Home -Desired National Status by 2005
• 75 of Title V State CSHCN agencies have a plan
  for statewide implementation
• Medical home accepted as the standard of care for
  primary and specialty care providers
• Medical home promotes and integrates 6 outcomes
  of an integrated system of care
• Evidence-based data gathered and analyzed for the
  cost-effectiveness of care coordination and the
  improved outcomes associated with medical homes
  for Children and Youth with Special Health Care
  Needs (CYSHCN)

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Integrated Services Branch Program (3)

• Adequate Financing -Desired National Status by
  2005
• Utilization cost profiles of CSHCN widely
  disseminated and innovative risk models used
• 3 health plans have Question and Answer
  initiatives for CSHCN use various strategies to
  identify and stratify
• CPT coding modifications accepted by AMA
  increasingly accepted by major insurers
• At least 5 key employers initiated steps to
  improve health work support benefits
• 7 States decreased uninsured and/or increased
  number with adequate insurance

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Integrated Services Branch Program (4)

• Universal Newborn Hearing Screening -Desired
  National Status by 2005
• All States screen 90 of newborns for hearing
  loss prior to discharge from nursery
• Medical homes established for 80 of all newborns
  screened
• Part C programs have (a) established standards
  for quality pediatric audiologic assessment and
  treatment and (b) increased capacity to meet
  needs
• Linked data systems to facilitate long term
  follow-up will be established in at least 30
  States

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Integrated Services Branch Program (5)

• Integrated Community Systems -Desired National
  Status by 2005
• 75 of State programs have implemented strategies
  to build/monitor/measure integrated community
  systems
• 100 of States/jurisdictions have access to
  technical assistance, information sharing, and
  funding
• Status reports available on all States
  implementation of easy-to-use community-based
  service systems

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Integrated Services Branch Program (6)

• Adolescent Transition -Desired National Status by
  2005
• Healthy and Ready To Work (HTRW) II projects
  deliver replicable components from State
  implementation models
• At least half of CSHCN programs identify
  transition priorities, with needs assessments and
  youth advisory councils in place
• At least 10 States implement HRTW components and
  work collaboratively with other partners on
  transition for YSHCN
• The Physicians Consensus Statement on Youth
  Transition is disseminated to youth, families,
  and providers, and is followed as standard
  practice

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Genetic Services
Translational
Delivering Genetic Services
Infrastructure
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Title XXVI of Childrens Health Act 2000

• Screening for Heritable Disorders in Newborns and
  Children
• To expand newborn and child screening programs
• Congressional language to begin implementation
• Involves 4 agencies HRSA, AHRQ, CDC, NIH
• Three parts
• 1109
• 1110
• 1111

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Resource Center

• National Newborn Screening and Genetics Resource
  Center -
• http//genes-r-us_at_uthscsa.edu
• Serves as a focal point for national newborn
  screening and genetics activities, and provides
  related resources to benefit consumers, health
  professionals, the public health community, and
  government officials.

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Contact Information

• Maternal and Child Health Bureau
• Division of Services for Children with Special
  Health Needs (DSCSHN)
• 5600 Fishers Lane, Room 18A-27
• Rockville, MD 20857
• [phone]
• Web site ftp//ftp.hrsa.gov/mchb/factsheets/dschs
  n.pdf