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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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  1. 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

  2. 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

  3. Background (continued) • Moreover, the combination of low socioeconomic status and medical complications at birth puts children at an increased risk for long term problems

  4. 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 Children’s Health Insurance Program (SCHIP) • created to reduce the prevalence of unmet health needs among the most disadvantaged children

  5. 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

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

  7. Patient Population • Medical Criteria • VLBW infants (<1500 grams); or • Heavier infants at high risk for adverse neurodevelopmental outcomes • Household Income Criteria • Annual household income <285% of the federal poverty level

  8. 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

  9. 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

  10. The Role of the Case Manager and Attorney • Assessing of each family’s 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

  11. Legal Counseling Legal Advocacy • Attorney provides legal education or counseling • Attorney provides legal counseling andintervenes 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

  12. Infants Enrolled for Case Management No Legal Intervention Required Eligible for Services Legal Intervention Required Legal Counseling Legal Advocacy

  13. Infant Demographics (N=67) • VLBW (N=52) • mean gestational age: 27 weeks • mean birth weight: 950 grams • Non-VLBW (N=15) • mean gestational age: 37 weeks • mean birth weight: 2962 grams

  14. Maternal Demographics • Mean Age: 24.9 years • Race • African American: 77% • Hispanic: 20% • White: 3%

  15. Maternal Socioeconomic Status • Single: 80% • Sole Caretakers: 55% • Unemployed: 82% • High School Diploma: 57% • Annual Income <$5,000: 43%

  16. Need for Legal Intervention for Access to Services (N=67) # of Infants Eligible for Services

  17. Overall Need for Legal Intervention to Access Services (N=67) 14/67(21%) 9/67(13%) 44/67(66%)

  18. Outcomes of Legal Advocacy • Receipt of benefits: 65/70 • Actions are pending: 2/70 • Still not receiving benefits: 3/70

  19. Conclusions • 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 • Hospital-based legal aid programs may be effective in improving access to critical services for low socioeconomic high-risk infants

  20. 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.

  21. 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

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