Do Indigent, High-Risk Infants Need Legal Advocacy To Receive Health and Welfare Services?

1. Do Indigent, High-Risk Infants Need Legal Advocacy To Receive Health and Welfare Services? Laura Barnickol, JD, MSW, Jocelyn Hirschman, MPH, Janell Fuller, MD, Gopal Srinivasan, MD, Swarupa Nimmagadda, 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. • Children from families of lower socioeconomic status 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, public benefits and other vital services to which they are legally entitled. • By providing case management and legal services to families on-site at hospital clinics, we can help them obtain these benefits and services.

6. Study Objective • To describe the frequency with which indigent infants, discharged from the NICU, require legal assistance to obtain the health and welfare benefits that they are legally entitled to.

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

9. Study Intervention • Case Management and Legal Services • Provided from the time of the infant’s NICU discharge through 1 year of age • Offered on-site in the NICU follow-up clinic

10. The Role of the Case Manager and Attorney • Assess each family’s eligibility for and access to public benefits like: • Medicaid/KidCare • Income supports (TANF, SSI) • Nutrition programs (Food stamps/WIC) • Early Intervention Programs • Screen for other issues like: • Child support problems, domestic violence, housing problems, immigration issues • Address any problems that arise through intensive case management and legal services

11. Description of Legal Services Provided Legal Counseling • Attorney provides legal education, advice & counseling Legal Advocacy • Attorney provides legal counseling andintervenes with outside agencies on behalf of the infant or family, through one or more of the following: • Written & verbal correspondence with state agencies • Assistance filing and resolving appeals • Representation in administrative hearings or other court proceedings

12. Method of Service Delivery Infants Enrolled for Case Management Eligible for Services No Legal Intervention Required Legal Intervention Required Legal Counseling Legal Advocacy

13. Infant Demographics (N=92) • VLBW - 76% • mean gestational age: 27 weeks • mean birth weight: 950 grams • Non-VLBW - 24% • mean gestational age: 37 weeks • mean birth weight: 2962 grams

14. Maternal Demographics • Average Age: 25years • Race • African American: 81% • Hispanic: 16% • Other: 3%

15. Maternal Socioeconomic Status • Single Mothers: 59% • Unemployed: 84% • High School Diploma: 67% • Annual Income <$5,000: 50%

16. Need for Legal Intervention for Access to Services (N=92) # of Infants Eligible for Services

17. Overall Need for Legal Intervention to Access Services (N=92) 17/92(18%) 16/92(17%) 59/92(65%)

18. Outcomes of Legal Advocacy With a total of 105 legal issues identified among the 92 participants: • Benefits were received: 97/105 • Actions are pending: 2/105 • Benefits not received: 6/105

19. Conclusions • Legal advocacy is often necessary for low socioeconomic high-risk infants to receive the health and welfare services that they are eligible for through existing legislation. • Hospital-based legal aid programs may be effective in improving access to these 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 • Use individual client experiences to advocate with state and federal agencies to reduce these barriers • Examples of systemic advocacy issues identified through this study: • State’s failure to transfer eligible children to the state medical program that best meets family’s income level • Inappropriate enrollment in Medicaid HMOs • Medicaid transportation problems • Developed a streamlined SSI application process & hospital based SSA outpost for taking applications