Chicago Family Advocacy Program: A Medical Legal Partnership for Children

1. Chicago Family Advocacy Program: A Medical Legal Partnership for Children University of Chicago Monday, April 17, 2006 Julie Justicz Health & Disability Advocates jjusticz@hdadvocates.org 708/567-9471; 312/223-9600

2. BACKGROUND: Project Access 2000-2004 • Pilot Project – A Medical, Legal, Case Management Collaboration • Very low birth weight infants or medically high-risk infants from neonatal intensive care unit (NICU) at two hospital sites • Followed for one-year post-discharge in clinic setting • Families of infants met regularly (2-4 weeks) with lawyer/case manager • Rec’d range of legal help • Neonatal Infant Outcome Study (NIOS): Randomized-controlled study of project services

3. BACKGROUND: Key Elements of Project Access Services • Intensive case management services • Legal services provided on-site at hospital neonatal intensive care unit (NICU) and follow-up care clinic • Interdisciplinary approach: Doctor, lawyer, case manager, social worker, nutritionist, Early Intervention providers, etc.

4. BACKGROUND: Why Was Project Access Developed? • Convenience and access for families • Combined medical risk and socio-economic disadvantage of target families • Proactive model • Best practice model for providers • Help families access broad range of social support services and developmental therapies • Good results in several key areas: access to benefits, receipt of benefits, compliance with care

5. NEW PROGRAM, May 2006: Chicago Family Advocacy Program • Medical and legal collaboration to assist families of infants and children with special health care needs; builds on successes of Project Access; expands patient base and range of services • Start Date: May 2006 • Partners: • Health & Disability Advocates • Legal Assistance Foundation of Metropolitan Chicago • University of Chicago Comer Children’s Hospital/Center for Health Families Clinic • McDermott Will & Emery

6. CHICAGO FAMILY ADVOCACY PROGRAM • SITE: University of Chicago’s Center for Healthy Families • PATIENTS: Medically high-risk infants and children, birth to age 5 years, who seek follow-up care at clinic • MORE SERVICES: Broader range of legal help for families: LAFMC brings array of legal resources

7. Who are CFAP Patients and Families?- Housing & Neighborhood Context • 63% have annual household incomes less than $10,000 • 57% are living without their babies’ father • 54% live in one of the poorest communities in Chicago 70% expect that they need help finding housing now that they have a new baby

8. Most are in unstable housing situations: 32% moved at least once in the last year 44% live in someone else’s home 53% find it difficult to pay rent each month 17% are currently behind on rent payments Few receive housing assistance: 6% lived in CHA or HUD housing 9% received a subsidy to help pay for rent Housing & Neighborhood Context

9. Characteristics of NICU Infants • Highest prevalence among hospital-based pediatric settings of • uninsured • public assistance • low maternal education • teen mothers • parental stress (exacerbated by infant’s illness and lengthy hospitalization)

10. High-Risk Infants: Special concerns after NICU discharge • High risk of mortality and morbidity • Home care routines may be complex and demanding • Special vulnerability of infant to “minor” lapses in care, follow-up appointments • Greatest vulnerability in first few months after discharge • Increased # of follow-up appts post hospital d/c

11. CFAP OPPORTUNITIES: Legal Help for Families • Lawyers meet families during medical clinic hours, assess cases, provide brief advice, referrals, counseling, or legal representation • Lawyers take referrals from hospital social workers, medical providers and provide assistance to families • Lawyers provide training, back-up and support to social workers and medical providers • Lawyers conduct individual representation and administrative advocacy on range of civil issues

12. Types of Legal Services Provided • CFAP will provide full range of civil legal services including: Public Benefits – SSI, TANF and other benefits, Medicaid, Insurance, Housing/Landlord-Tenant, Consumer, Unemployment Insurance, Utilities, Domestic Violence, Early Intervention, Special Education, and other issues.

13. Case Example • Twenty-year old single mother quit her full-time secretarial job to care for newborn infant with special medical needs. She was denied unemployment insurance because she “voluntarily quit.” Receives eviction papers because she did not pay rent. Child may be eligible for SSI, but mother is not sure if she applied.

14. Case Example: Legal Response • Assess Unemployment Regs: Determine if she qualifies for exception to voluntary quit rule; • Review eviction papers; examine defenses to eviction, 5 day notice, defenses; represent in court, negotiate with landlord; help obtain emergency funds • Advocate with Social Security administration to expedite SSI benefits; if denied, appeal case and represent at hearing

15. Likely Eligible Social Services and Benefits- Results from NIOS Percent of Families Receiving Some Other Cash Benefit (e.g., Temporary Assistance for Needy Families) at 12 Mos. p=0.04

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

17. How to Make a Referral to CFAP • Referring doctor to complete referral form • Communicate with Social Work about problem • When referral and SW contact are made, contact Dr. Nimmagadda • Preferred method of referral is email, if possible • Dr. Nimmagadda’s pager is 4040