The Impact of Legal Services and Case Management on High Risk Infants and Their Families: A Randomized Controlled T

1. The Impact of Legal Services and Case Management on High Risk Infants and Their Families: A Randomized Controlled Trial Janell Fuller, MD, Jocelyn Hirschman, MPH, Laura Barnickol, JD, Gopal Srinivasan, MD, Jaideep Singh, MD, Swarupa Nimmagadda, MD, and Stephen Wall, MDUniversity of Chicago Hospitals and Mt. Sinai Hospitals

2. Background • Studies on the effects of low socioeconomic status on children’s health have repeatedly demonstrated higher incidences of mortality, disability and unmet health care needs • For medically fragile infants especially, socioeconomic disadvantage may further compromise the infants’ overall health and developmental outcomes

3. Background • Multiple services (Medicaid, Supplemental Security Income (SSI), State Children’s Health Insurance Program (SCHIP), etc.), exist to help poor families cope with medically fragile infants, which, if accessed could ameliorate some of the effects of poverty on these infants’ health and development • Barriers to these programs and to health care, however, still exist for these families with medically fragile infants due to complex application processes, prolonged processing times, and family limitations

4. Hypothesis Legal services and case management will improve receipt of services and outcomes for low socioeconomic, medically high-risk infants and their families.

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

6. Methods:Study Sample—Medical Criteria • Birth weight ≤1500 grams; or • Birth weight >1500 grams and at high risk for adverse neurodevelopmental outcomes • history of grade III/IV IVH, PVL, moderate/severe hydrocephalus • Extra Corporeal Membrane Oxygenation (ECMO) • major congenital anomalies • neonatal seizures, abnormal neurologic exam, or other diagnoses predisposing to poor neurodevelopmental outcomes

7. Methods:Study Sample—Other Criteria • Household Income • Annual household income <285% of the federal poverty level • Infant Primary Care Follow-up • Follow-up had to be from each of the hospital’s pediatric high-risk outpatient clinics • Custody • Family has custody of the infant

8. Methods:Randomization • All NICU admissions from March 2002 through August 2003 were screened for eligibility • Eligible infants were recruited and consented in the NICU around the time of discharge • Infants were randomized 2:1 • Intervention Group • Project Access Services • Control Group • Traditional Hospital Services

9. Methods:Services • Control Group • Traditional Hospital Services • Discharge case manager and/or social worker • Clinic social worker • Intervention Group • Project Access Services • Traditional hospital services • Legal services • Intensive case management

10. Methods • Infants and their families were followed until the infant’s reached 1 year corrected gestational age • Families were interviewed every two months on a range of topics, including: • Receipt of social services and benefits • Compliance with medical care • Infant health and development • Maternal/Infant Quality of Life • Data were analyzed using the chi-square test and student’s t-test

11. Results • Over an 18 month period • 153 infants and their families were enrolled and randomized • 103 were randomized to the Intervention Group • 80 VLBW and 23 non-VLBW • 50 were randomized to the Control Group • 40 VLBW and 10 non-VLBW • 71% of the enrolled families completed the study

12. Infant Characteristics Intervention(n=103) Control(n=50) p-value Gender Males 57% 72% 0.08 Females 43% 28% Birthweight < 1000 grams 46% 36% 0.29 1000 to 1500 grams 31% 44% > 1500 grams 23% 20% Primary Medical Criteria for Enrollment VLBW 78% 80% 0.74 Average Length of NICU Stay 70 days 68 days 0.74 Chronic Lung Disease in the VLBW group 44% 30% 0.13 Grade III/IV IVH / PVL / Hydrocephalus 15% 14% 0.80 Complex Needs at Discharge 66% 63% 0.71

13. Control(n=50) p-value Intervention(n=103) Average Age 25 years 24 years 0.58 Age Group < 18 years 18% 12% 0.11 19-35 years 69% 84% > 35 years 13% 4% Race/ethnicity Black 76% 90% 0.15 Hispanic 18% 8% Other 6% 2% Education: < high school diploma 43% 33% 0.28 Marital Status Single 80% 77% 0.88 Divorced, separated, widowed 3% 4% Married 17% 19% Maternal Characteristics

14. Maternal Characteristics Intervention(n=103) Control(n=50) p-value Employment Status Unemployed 84% 88% 0.46 Employed Part-time 7% 2% Employed Full-time 9% 10% Annual Household Income $10,000 or less 63% 63% 0.43 $10,001 - $20,000 15% 22% over $20,000 22% 15% Lives with Infant’s Father 45% 40% 0.64 First Child 48% 42% 0.52

15. Percent of Families Receiving Medicaid/Kidcare at 12 Months Likely Eligible Social Services and Benefits:Medicaid/Kidcare

16. Percent of Families Receiving Food Stamps at 12 Months Likely Eligible Social Services and Benefits:Food Stamps

17. Percent of Families Receiving TANF at 12 Months Likely Eligible p=0.03 Social Services and Benefits:Temporary Assistance for Needy Families (TANF)

18. Percent of Families Receiving SSI for Their Infants at 12 Months Likely Eligible Social Services and Benefits:Supplemental Security Income (SSI)

19. Other Outcomes • There were no statistically significant differences between the two groups in terms of: • Medical Care Compliance • Rehospitalizations • Emergency Room Visits • Infant Development • As measured by the 12 month ASQ

20. Discussion:Medicaid and Food Stamps • Not unexpected that there were no differences in Medicaid and Food Stamps • Medicaid • All hospitals initiate Medicaid applications for infants without medical coverage before the infants’ discharge • Majority of infants remain eligible for Medicaid throughout the first year of life • Food Stamps • No job requirements associated with receipt of food stamps if child less than 6 years of age • Less rigid reporting requirements and higher income limits than other public aid programs

21. Discussion:TANF • Project Access families were almost 4 times as likely to be receiving TANF than control families • ½ of all project access families were likely eligible for TANF but only ½ were actually receiving it • Only 1 of the eligible 34 control families (3%) were receiving TANF

22. Discussion:TANF • Program’s work requirement and 60 month limit on receipt of benefits often make it unappealing to eligible families • Mothers are generally unaware that they may qualify for the TANF medical exemption available to mothers with special needs children • Excuses mothers from the work requirement • Stops the clock on the 60 month limitation

23. Discussion:Supplemental Security Income • Increased access to SSI benefits for the intervention group was expected to be one of the project’s positive results • The fact that both groups received SSI in comparable numbers is most likely due to the project team’s extensive advocacy work with the Supplemental Security Administration (SSA) which benefited both groups

24. Discussion:Supplemental Security Income • Pilot study • NICU and clinic staff became educated on SSI eligibility and the application process • A streamlined SSI application process was developed • Advocated for a SSA Outpost • Local Social Security Administration (SSA) staff came onsite at each hospitals’ NICU to take SSI applications from all eligible infants in the NICUs • Outpost benefited all of the NICU infants as well as the hospitals and the local SSA offices by providing a great outreach opportunity

25. p<0.0001 Social Security Administration (SSA) Outpost Results Average Number of Days before a Disability Determination was Made on the Low Birth Weight Applications in Illinois September 01, 2003 – August 20, 2004, SSA 36 infants Range 3-14 days 632 infants Range 1-259 days

26. Discussion:Limitations • Small sample size • Only 71% completed the study • Significant differences in the two study sites • Data contamination with SSA outpost • Intervention bias

27. Conclusions • Clinic and/or hospital based legal services and case management may improve low socioeconomic, medically high-risk infants and their families access to services • Further studies are needed to fully evaluate the effects of legal services and case management, especially on the long term outcomes of these infants and their families