Achieving CommunityBased Service Systems for Children with Special Health Care Needs and Their Famil

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Achieving Community-Based Service Systems for
Children with Special Health Care Needs and Their
Families

• Merle McPherson
• September, 2002

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The Presidents New Freedom Initiative (1)

• Delivering on the Promise released in March
  2002
• Reviewed barriers to community living for people
  with disabilities
• Compilation of reports of nine Federal agencies,
  including HHS.
• 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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The Presidents New Freedom Initiative (2)

• Identified access barriers to
• Comprehensive, family-centered care
• Affordable insurance
• Early and continuous screening for special health
  care needs
• Transition services to adulthood
• Also addressed issues for families
• Need for family satisfaction
• Complexity and organization of services resulting
  from fragmentation and multiple funding streams

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The Context

• Building on a 20-year history
• development
• demonstration
• partial implementation
• History
• National Agenda for CSHCN-1987/88
• Legislative Changes in Title V- OBRA 89
• Healthy People 2000 and 2010

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Title V Legislative ChangesOBRA 89

• Provide rehabilitative services for children
  under 16 receiving SSI if medical assistance is
  not provided through Medicaid
• Provide and promote family-centered,
  community-based coordinated care
• Facilitate the development of community-based
  systems of services

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Why Now?

• Healthy People 2010 Objectives and Title V
  Performance Measures provide accountability.
• CSHCN defined being operationalized.
• Six core outcomes for system defined and
  disseminated/accepted
• SPRANS program/priorities reflect outcomes
• Measurement initiatives in place to provide
  national/State data on progress
• 21st century has arrived!

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Defining CSHCN (1)

• New definition developed through consensus
  process - 1994 and 1995
• Published in Pediatrics - July 1998
• National/State survey using definition to gather
  prevalence and other data

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Defining CSHCN (2)

• 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.

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Core Outcomes

• Family Participation and Satisfaction
• Access to Medical Home
• Access to Affordable Insurance
• Early and Continuous Screening
• Easy-to-Access Community-based Service Systems
• Services Necessary to Transition to Adulthood

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Action Steps - Family Partnership Satisfaction

• Assure family-professional collaboration as a key
  element of the medical home
• Enhance family-professional collaboration at all
  levels to improve the system of care for children
  with special health care needs
• Support the participation of traditionally
  under-represented families
• Develop and promote adequate measures for
  determining family satisfaction with health care
  services

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Action Steps - Medical Home

• Standardize the core elements of the medical home
• Promote the medical home approach
• Expand access to medical homes
• Use the medical home as a measure of quality care

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Action Steps - Adequate Insurance

• Expand insurance to uninsured children with
  special health care needs
• Expand coverage for children with private and/or
  public insurance and address the issue of
  under-insurance
• Strengthen the financing system

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Action Steps - Early and Continuous Screening

• Improve access to and availability of screening
  services
• Support data capacity for integration of
  screening results
• Improve screening guidelines and standards
• Promote awareness of the need for and benefits of
  early and continuous screening

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Action Steps - Easy-to-UseCommunity Systems (1)

• Establish and maintain units at the community
  level with responsibility for development of
  systems of services that are fully inclusive of
  CSHCN and their families
• Build the capacities of key community
  stakeholders to develop community-based systems
  of services

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Action Steps - Easy-to-UseCommunity Systems (2)

• Provide adequate public financing for the
  development of community-based systems of
  services and the provision of needed community
  services
• Work toward the goal of every community having
  adequate services for all CSHCN, organized so
  families can use them easily
• Provide results-based accountability of
  community-based systems of services

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Action Steps -Transition to All Aspects of Adult
Life (1)

• Use Title V to facilitate the development of
  HRTW/Transition systems for children, youth, and
  young adults with special health care
• needs and their families
• Include youth with special health care needs
• as decision-makers and as partners

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Action Steps -Transition to All Aspects of Adult
Life (2)

• Expand accessible and affordable health insurance
  for youth with special health care needs.
• Provide youth with special health care needs with
  medical homes responsive to their needs

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Evidence Base Family Participation and
Satisfaction (1)

• Families of CSHCN are likely to be dissatisfied
  with information received
• Need it to be clear
• Need condition specific, developmental and
  services information
• Need to get some information from others who have
  been there
• (Brandeis University, 1999)
• 18 of 12.6 million families with CSHCN reported
  dissatisfaction with some aspect of care,
  including informational needs
• (Newacheck, 1998)

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Evidence Base Family Participation and
Satisfaction (2)

• Families of CSHCN want
• Sustained State-level effort formally organized
  and staffed with paid parents
  (Robert Wood Johnson, 1999)
• Increased parent/professional communication and
  understanding
  (CAPP, 1993)
• Family-centered, culturally competent services
  and providers (Malach, 1996)
• Congress concerned about families ability to
  obtain sufficient and appropriate health care
  wants health information and education centers
  (1997,1999 Senate Conference Reports
• for Appropriations)

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Evidence Base Medical Home

• Simply put, when a child visits the same
  practitioner rather than different practitioners,
  care is more efficient. A population-based study
  involving review of all claims of a random sample
  of Medicaid patients (aged 0-21) for 3 years
  indicated that longitudinally was associated with
  a reduction of hospital admissions and overall
  costs.
• (Flint, 1987)

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Evidence Base Adequate Insurance

• Approximately 90 have private or public health
  insurance
• approximately 60 with private/30 with Medicaid
• 80 of uninsured CSHCN lived in families with
  incomes below 200 of FPL
• 3/4 families with uninsured CSHCN cited high
  cost of health insurance as the main reason for
  absence of coverage

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Evidence Base Early and Continuous Screening

• Universal newborn hearing screening leads to
  earlier detection and to earlier treatment of
  hearing loss. On average, hearing loss is
  detected and treated 6-9 months earlier (U.S.
  Preventive Services Task Force, 2001)
• Children enrolled in a program of early
  intervention by 6 months demonstrate language and
  verbal skills approximately those of their
  hearing peers (Yoshinaga-Itano, et. al.
  1998)

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Evidence Base Easy-to-Use Community
SystemsFamilies report lack of service
integration a major problem Mechanisms for
communication between providers, funding streams,
and processes have not been highly developed.
Thus, care provided to one individual by
multiple providers could be duplicative,
unnecessary, or at cross-purposes with other
care.Family Voices/Brandeis Your Voice Counts
Survey found that families often rely upon
themselves to coordinate care because they are
more knowledgeable than case managersand case
managers have a high turnover rate and too heavy
caseloadsTitle V State Block Grant Needs
Assessments e.g, in Washington State, 43 of
families in managed care identified lack of
care coordination as an issues interagency
coordination now a State-wide priority
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Evidence Base Transition

• Almost 1 million children under age 18 and more
  than 500,000 adult recipients who became eligible
  before 18 are receiving SSI benefits with
  expected time to receive benefits 30 years
• (SSA, Children Receiving SSI, June 2002)
• More than 90 of CSHCN are living to adulthood
• (Newacheck, 1998)
• About 70 of adults with disabilities ages 18 to
  65 are unemployed
• (DOL)
• Access to health care is accepted as a primary
  barrier to keeping people with disabilities
  outside the world of work
• (PTFEAD, Re-Charting the Course, November
  1998)

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National Survey on CSHCN

• MCHB Partnership with NCHS
• Uses the sampling frame for the National
  Immunization Survey
• Identifies 750 CSHCN per State by random digit
  dialing telephone survey
• Uses the Living with Illness Survey as a common
  measure to identify CSHCN
• Gathers information on the impact of the system
  on CSHCN and their families