Achieving and Measuring Success for Children with Special Health Care Needs

1
Partnering to Achieve Community Service Systems
for CSHCN
Merle McPherson, MD, MPH New Leaders Orientation
Meeting October 2004
2
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

3
History (2)

• Surgeon Generals Conferences
• 1982
• 1988
• Title Vs revised legislative mandate (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)

4
Core Outcomes (1-3)

• Families of CSHCN will participate in decision
  making at all levels and will be satisfied with
  the services they receive.
• CSHCN will receive regular ongoing comprehensive
  care within a medical home.
• Families of CSHCN will have adequate public
  and/or private insurance to pay for the services
  they need.

5
Core Outcomes (4-6)

• Children will be screened early and continuously
  for special health care needs.
• Community-based service systems will be organized
  so families can use them easily.
• Youth with special health care needs (YSHCN) will
  receive the services necessary to make
  transitions to all aspects of adult life.

6
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

7
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.

8
Integrated Services Branch Program OVERALL
STRATEGIES 2004-2005 (1)

• SIX OVERALL IMPLEMENTATION STRATEGIES
• Fund implementation grants,
• Work with DSCH and Block Grant,
• Identify/address special issues,
• Coordinate with partners,
• Develop/Disseminate information,
• Monitor/Measure progress
• Integrate new programs (Epilepsy, TBI)

9
Integrated Services Branch Program (2)

• 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.

10
Integrated Services Branch Program (3)

• 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 CYSHCN

11
Integrated Services Branch Program (4)

• Adequate Financing -Desired National Status by
  2005
• Utilization cost profiles of CSHCN widely
  disseminated and innovative risk models used
• 3 health plans have QA 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

12
Integrated Services Branch Program (5)

• 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

13
Integrated Services Branch Program (6)

• 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

14
Integrated Services Branch Program (7)

• Adolescent Transition -Desired National Status by
  2005
• HRTW 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

15
Genetics Services Branch Program
1. Facilitate the development of health care
and public health infrastructure to enhance and
expand newborn screening programs and to improve
linkages among them and the 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.
16

Genetics Services Branch Program

• 3. Improve the genetic literacy of the MCH
  population by enhancing its 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 of health
  professionals working with the MCH population.

17

Genetics Services Branch Program

• 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.

18
Genetic Services
Translational
Delivering Genetic Services
Infrastructure
19
Title XXVI of Childrens Health Act 2000

• Screening for Heritable Disorders in Newborns and
  Children
• To expand newborn and child screening programs
• Involves 4 agencies HRSA, AHRQ, CDC, NIH
• Three parts grants to states, evaluation and
  established advisory committee
• Advisory Committee on Heritable Disorders and
  Genetic Diseases in Newborns and Children
• Advise the Secretary on science and technology
  for expanding or enhancing screening for
  heritable disorders in children

20
Genetic Branch Initiatives FY 2004 (1)

• Family History as an Educational Tool
• utilize a consumer-based family history tool to
  increase awareness about genetics
• Regional Genetics and Newborn Screening
  Collaboratives
• enhance and support the genetics and newborn
  screening capacity of states within defined
  regions

21
Genetic Branch Initiatives FY 2004 (2)

• Genetics Public Policy
• increase the knowledge base in the area of
  genetic services
• evaluate existing data and recommend and weight
  priorities on health and economic value of
  genetic services, including genetic testing,
  education and counseling to provide important
  cost, health outcomes, and quality of care data
• address the ethical and social issues surrounding
  the use of new and emerging technologies
• Evaluate current and future models for delivering
  genetic tests and other genetic services

22
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.