Do Medically High-Risk Infants from Families of Lower Socioeconomic Status Need Legal Advocacy To Receive Health and Welfare Services?

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Do Medically High-Risk Infants from Families of
Lower Socioeconomic Status Need Legal Advocacy
To Receive Health and Welfare Services?

• Janell Fuller, MD, Jocelyn Hirschman, MPH, Laura
  Barnickol, JD, Gopal Srinivasan, MD, Swarupa
  Nimmagadda, MD, Kwang-sun Lee, MD, and Stephen
  Wall, MD

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Background

• Low socioeconomic status has been repeatedly
  demonstrated to have negative effects on the
  health of children and families
• These children have a higher incidence of
  mortality and disability, and are more likely to
  have unmet health needs

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Background (continued)

• Moreover, the combination of low socioeconomic
  status and medical complications at birth puts
  children at an increased risk for long term
  problems

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History

• 1965--Medicaid
• enacted to provide health care services for
  certain low-income individuals and families
• 1972--Supplemental Security Income
• created to provide cash assistance to low-income
  elderly, the blind, and the disabled (including
  children)
• 1997--State Childrens Health Insurance Program
  (SCHIP)
• created to reduce the prevalence of unmet health
  needs among the most disadvantaged children

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Specific Hypothesis

• Medically high-risk children in families of lower
  socioeconomic status are still encountering
  barriers in obtaining health insurance and other
  vital services for which they are legally
  entitled
• By providing case management and legal services
  to the families on-site at hospital clinics, we
  could help them obtain these services

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Study Objective

• To describe the prevalence of health and welfare
  services that require legal assistance among
  indigent infants after their discharge from the
  NICU

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Patient Population

• Medical Criteria
• VLBW infants (lt1500 grams) or
• Heavier infants at high risk for adverse
  neurodevelopmental outcomes
• Household Income Criteria
• Annual household income lt285 of the federal
  poverty level

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Study Sites

• Two Chicago urban area hospitals
• University of Chicago
• 55 bed NICU
• 82 African American and 10 White
• Mt. Sinai Hospital (Chicago)
• 34 bed NICU
• 56 African American and 40 Hispanic

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Study Intervention

• Case Management and Legal Services
• Provided from the time of NICU discharge through
  1 year of age
• Provided on-site in the NICU follow-up clinic

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The Role of the Case Manager and Attorney

• Assessing of each familys needs, eligibility,
  and access to services
• Medicaid/KidCare
• Income support (TANF, SSI)
• Food stamps/WIC
• Early Intervention Programs
• Screening for other needs
• Child support, domestic violence, housing,
  immigration

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Legal Counseling

• Attorney provides legal education or counseling

Legal Advocacy

• Attorney provides legal counseling and intervenes
  with outside agencies on behalf of the infant or
  family, through one or more of the following
• Phone calls and letters to state agencies
• Appeals
• Representation in administrative hearings or
  other court proceedings

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• Infants Enrolled for Case Management

No Legal Intervention Required
Eligible for Services
Legal Intervention Required
Legal Counseling
Legal Advocacy
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Infant Demographics (N67)

• VLBW (N52)
• mean gestational age 27 weeks
• mean birth weight 950 grams
• Non-VLBW (N15)
• mean gestational age 37 weeks
• mean birth weight 2962 grams

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Maternal Demographics

• Mean Age 24.9 years
• Race
• African American 77
• Hispanic 20
• White 3

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Maternal Socioeconomic Status

• Single 80
• Sole Caretakers 55
• Unemployed 82
• High School Diploma 57
• Annual Income lt5,000 43

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Need for Legal Intervention for Access to
Services (N67)
of Infants Eligible for Services
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Overall Need for Legal Intervention to Access
Services (N67)
14/67(21)
9/67(13)
44/67(66)
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Outcomes of Legal Advocacy

• Receipt of benefits 65/70
• Actions are pending 2/70
• Still not receiving benefits 3/70

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Conclusions

1. Legal advocacy is often required by low
   socioeconomic high-risk infants to receive health
   and welfare services for which they are eligible
   by existing legislation
2. Hospital-based legal aid programs may be
   effective in improving access to critical
   services for low socioeconomic high-risk infants

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A Broader Claim

• The barriers to assistance for these children
  after NICU discharge are not all financial---
  indeed, some children may be entitled to
  significant income support and social service
  programs, but still have extreme difficulty in
  accessing them without legal intervention.
• If we intend to care for these children in a
  comprehensive way, we must not only support
  efforts to create and sustain health and welfare
  programs, but also reform the bureaucracies that
  administer them, so that families have real
  access.

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Implications

• Conduct research to fully describe barriers that
  limit families access to these programs
• Advocate with state and federal agencies to
  reduce these barriers
• Provide families with case managers and legal
  assistance when necessary
• Work to educate agency personnel and legislators
  about barriers and ways to overcome them