Achieving and Measuring Success for Children with Special Health Care Needs

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MCHB

• DSCSHN

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All Aboard the 2010 Express!
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Systems Mandate

• Amended Legislation for Title V of the Social
  Security Act (1989)
• Facilitate the development of community-based
  systems of services
• Healthy People 2010 Objective 16-23
• Increase the proportion of States and
  territories that have service systems for
  children with special health care needs.
• The Presidents New Freedom Initiative (2001)
• Responsibility given to HRSA for developing and
  implementing a community-based service system

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6 Systems Components

• National Survey of Children with Special Health
  Care Needs
• Family Partnership and Satisfaction Status
  57
• Access to Medical Home Status 47
• Adequate Financing/ Insurance Status 62
• Early and Continuous Screening Status 63
• Easy Access to Community Based Services Status
  89
• Services to Transition to Adulthood Status 41
  
• ALL COMPONENTS Status 20

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Who are CYSHCN?

• 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.
• 13.9 of children and youth under age 18

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Who Are We?
Office of the Director
Integrated Services Branch
Genetic Services Branch
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Office of the Director

• Revisions of NS-CSHCN to improve measurement of
  outcomes for family partnership, organization of
  services for easy use, and developmental
  screening.
• Launch new initiative on universal vision
  screening for young children via National
  Coordinating Center for Vision Screening for
  Young Children.
• Work with public and private constituents to
  protect focus on pediatrics and family-centered
  care in the new world of medical home.

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Integrated Services Branch
Diana Denboba
Lynda Honberg
Janie Martin Heppel
Irene Forsman
Deidre Washington
Donelle McKenna
Deanna McPherson
Bev Jones
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Integrated Services Branch

• Supports the core systems program through State
  Implementation Grants in over half of States,
• Supports National Resource Centers to facilitate
  core systems outcomes (Family Voices, NCCC, AAP,
  Catalyst Center, HRTW, Champions),
• Supports systems development activities for
  specific conditions including Newborn Hearing
  Screening, Autism, Epilepsy, and Traumatic Brain
  Injury.

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Integrated Services Branch

• Promote family-centered care, cultural
  competence, and family professional partnerships
  through Family-to-Family Health Information and
  Education Centers in every state and DC,
• Support Continuous Quality Improvement (CQI) in
  all sponsored programs (Continuation of Learning
  Collaborative Model with National Initiative for
  Childrens Healthcare Quality)

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Integrated Services Branch

• Expand the capacity of the private and public
  health system to strengthen the financing system
  and provide adequate health insurance and
  financing for all CYSHCN,
• Improve access to early and continuous screening
  and surveillance through enhanced data
  integration capacity, improved guidelines, and
  increased awareness.

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Genetic Services Branch
Michele Puryear
Marie Mann
Penny Kyler
Alaina Harris
Jill Shuger
Lorraine Brown
Jack Arner
Carrie Diener
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Genetic Services Branch

• Facilitate health care and public health
  infrastructure to enhance and expand newborn
  screening programs and to improve linkages among
  state and community systems of care for CSHCN
• Support the National Hemophilia,Thalassemia
  Comprehensive Care, and the Sickle Cell Disease
  Newborn Screening Programs as models of
  comprehensive care for the delivery of genetic
  services testing, counseling, education and
  coordinated system of services.

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Genetic Services Branch

• Examine emerging issues and technologies in
  genetics with a special emphasis on the
  financial, ethical, legal and social implications
  of these issues/technologies for MCH populations,
• Improve the genetic literacy of the MCH
  population by enhancing understanding of the
  benefits, risks, limitations, and implications of
  genetic testing and the role of genetic
  information in improving health practices.

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Genetic Services Branch

• Newborn Screening Saves Lives Act of 2008
• Establish Grant Program to provide education,
  outreach, and coordinated follow-up care,
• Expands responsibilities of the Advisory
  Committee on Heritable Disorders and Genetic
  Diseases in Newborns and Children to advise the
  Secretary on science and technology for expanding
  or enhancing screening for heritable disorders in
  children.

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Genetic Services Branch

• Newborn Screening Saves Lives Act of 2008
• Facilitate creation of Federal Guidelines on
  newborn screening
• Assist States in meeting Federal guidelines.
• Clearinghouse for newborn screening educational
  materials,
• Establish an Interagency Coordinating Committee
  on Newborn and Child Screening.

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Partnership
We work with you!
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Additional Information

• Contact
• Bonnie Strickland, Ph.D.
• Director, DSCSHN
• HRSA/MCHB
• bstrickland_at_hrsa.gov
• 301-443-9331

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Join the 2010 Express!