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 51
• Access to Affordable Insurance Status 60
• Early and Continuous Screening Status 52
• Easy Access to Community Based Services Status
  74
• Services to Transition to Adulthood Status 6
  

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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.
• 12.8 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

• Bonnie Strickland

Reene Newton
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Office of the Director

• Leads, integrates and represents systems of
  services issues with the leadership of other
  Federal agencies, professional organizations, and
  national family organizations.
• Leads the development of emerging issues
  impacting CYSHCN, including Access to
  Subspecialty Services Autism Spectrum Disorder
  Mental Health Oral Health and
• Leads data initiatives for CYSCHN with the MCHB
  National Surveys and the MCHB Data Resource
  Center.

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Integrated Services Branch
Diana Denboba
Lynda Honberg
Irene Forsman
Janie Martin Heppel
Elizabeth McGuire
Bev Jones
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Integrated Services Branch

• 1. Promote family-centered care, cultural
  competence, and family professional partnerships
  to assure that families of CYSHCN are full
  partners in decision-making at all levels,
• 2. Assure that all CYSHCN have access to ongoing,
  comprehensive, coordinated care through the
  medical home,

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Integrated Services Branch

• 3. 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,
• 4. Improve access to early and continuous
  screening and surveillance through enhanced data
  integration capacity, improved guidelines, and
  increased awareness,

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Integrated Services Branch

• 5. Support Community-State Partnerships to assure
  that community services are available, inclusive,
  and organized for easy use,
• 6. Improve access to comprehensive services to
  support youth transition to adult health care,
  work, and independence.
• 7. Promote infrastructure that facilitates the
  integration of categorical programs into a
  comprehensive, coordinated service system (TBI,
  Epilepsy, Newborn Hearing Screening).

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

• 1. Facilitate the development of 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.
• 2. Examine emerging issues and evaluate emerging
  technologies in genetics with a special emphasis
  on the financial, ethical, legal and social
  implications of these issues/technologies for MCH
  populations.

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Genetic Services Branch

• 3. 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.
• 4. Provide leadership in defining the educational
  needs in genetics for health professionals
  working with MCH populations.

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Genetic Services Branch

• 5. Support the National Hemophilia, the
  Thalassemia Comprehensive Care, and the Sickle
  Cell Disease Newborn Screening Programs as a
  model of comprehensive care for the delivery of
  genetic services testing, counseling, education
  and coordinated system of services.
• 6. Build on the expertise gained with the MCH
  population to provide national leadership on
  expanding and enhancing genetics services for the
  entire population.

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Genetic Services Branch

• 7. Advise the Secretary on science and technology
  for expanding or enhancing screening for
  heritable disorders in children, through the
  Advisory Committee on Heritable Disorders and
  Genetic Diseases in Newborns and Children.

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Partnership
We work with you!
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Join the 2010 Express!