Health Resources and Services Administration

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Health Resources and Services Administration

• Genetic Services Branch
• Maternal and Child Health Bureau
• Michele A. Lloyd-Puryear
• June 2007

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Health Resources and Services Administration
(HRSA)

• HRSA is the Nations access agency improving
  health and saving lives by making sure the right
  services are available in the right places at the
  right time.

• Vision HRSA envisions optimal health for all,
  supported by a heath care system that assures
  access to comprehensive culturally competent,
  quality care.
• Mission HRSA provides national leadership,
  program resources and services needed to improve
  access to culturally competent, quality health
  care.

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Maternal and Child Health Bureau

• Mission To provide national leadership and to
  work, in partnership with states, communities,
  public-private partners, and families to
  strengthen the MCH infrastructure, assure the
  availability and use of medical homes, and build
  the knowledge and human resources, in order to
  assure continued improvement in the health,
  safety and well-being of the MCH population.

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Relevant Activities and Programs

• Genetic Services Program Delivering Genetic
  Services serves as models of comprehensive care
  for the delivery of genetic services testing,
  counseling, education and coordinated system of
  services.
• Sickle Cell Disease Program
• National Hemophilia Program
• Thalassemia Program

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Relevant Activities and Programs

• Advisory Committee on Heritable Disorders and
  Genetic Diseases in Newborns and Children
• http//mchb.hrsa.gov/programs/genetic
  s/committee/
• National Newborn Screening and Genetic Resource
  Center
• http//genes-r-us.uthscsa.edu/
• Maternal and Child Health Bureau Title V Block
  Grant
• http//mchb.hrsa.gov/programs/blockgrant/over
  view.htm

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CORE PUBLIC HEALTH SERVICES DELIVERED BY
MCH AGENCIES
DIRECT HEALTH CARE SERVICES (GAP
FILLING) Examples Basic Health Services and
Health Services for CSHCN
MCH
EPSDT
CHC
SCHIP
ENABLING SERVICES Examples Transportation,
Translation, Outreach, Respite Care, Health
Education, Family Support Services, Purchase
of Health Insurance, Case Management,
Coordination with Medicaid, WIC and Education
POPULATION--BASED SERVICES Examples Newborn
Screening, Lead Screening, Immunization, Sudden
Infant Death Counseling, Oral Health, Injury
Prevention, Nutrition and Outreach/Public
Education
INFRASTRUCTURE BUILDING SERVICES Examples Needs
Assessment, Evaluation, Planning, Policy
Development, Coordination, Quality Assurance,
Standards Development, Monitoring, Training,
Applied Research, Systems of Care and
Information Systems
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Programs Frequently Administered by State Title
V MCH Programs

• WIC
• Part C Early Intervention, Individuals with
  Disabilities Education Act (IDEA)
• Family Planning
• School Health
• Children with Special Health Care Needs (CSHCN)
• Newborn Screening

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Sickle Cell Disease Programs

• Sickle Cell Disease and Newborn Screening Program
• Sickle Cell Disease Treatment Demonstration
  Program

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Sickle Cell Disease and Newborn Screening Program

• The Branch funds 17 Sickle Cell Disease and
  Newborn Screening Community-Based Programs
  (grants) and a National Coordinating and
  Evaluation Center based at SCDAA (cooperative
  agreement)
• support the comprehensive care for newborns
  diagnosed with sickle cell disease or as carriers
  of sickle cell disease and their families
• Projects reflect partnerships
• State Title V and newborn screening programs,
• community-based sickle cell disease
  organizations,
• comprehensive sickle cell treatment centers and
• community-based primary care providers.
• Purpose
• to enhance the follow-up component of state
  sickle cell disease newborn screening programs
  and support community-based efforts that provide
  hemoglobinopathy counseling, sickle cell
  disease-related education, referrals to a medical
  home and support services.

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Sickle Cell Disease Treatment Demonstration
Program

• Each Network supports the work, service
  provision, education, genetic/hemoglobinopathy
  counseling, and outreach of three to five
  individual Federally-qualified health centers,
  nonprofit hospitals or clinics and/or university
  clinics that provide primary care.
• increase the present capacity and capability of
  eligible ambulatory health care delivery entities
  to coordinate service delivery, genetic
  counseling and testing, and train health
  professionals in the care of individuals with
  sickle cell disease. 

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Sickle Cell Disease Treatment Demonstration
Program

• Health Services Inc., Montgomery, Alabama Network
  for SC Care, Access, Prevention, and Education
  (ANSCAPE), Montgomery, AL
• Stedman-Wade Health Services Inc., Carolina
  Partnership for SC Treatment Continuum of Care,
  Fayetteville, NC

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Sickle Cell Disease Treatment Demonstration
Program

• Christian Community Health Center, Illinois
  Sickle Cell Action Network (ISCAN), Chicago, IL
• University of Cincinnati Medical Center,
  Cincinnati Sickle Cell Network, Cincinnati OH

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Sickle Cell Disease Treatment Demonstration
Program

• Research Triangle Institute International, in
  partnership with Meharry Medical College and
  Sickle Cell Disease Association of America,
  serves as the National Coordinating Center

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Thank You
Michele A. Lloyd-Puryear mpuryear_at_hrsa.gov 301-443
-1080