Michael Reese 
Health Trust Peer Review 
of PROJECT ACCESS
September 30, 2021

Overview of Presentation

    Describing, Implementing & Documenting the Project Access Intervention 
    Julie Justicz, JD, Project Access Director
    Laura Barnickol, JD, Project Access Attorney
    Elaine Mister, RN, Project Access Case Manager at U of C
    Minerva Esparza, MSW, Project Access Case Manager at MSH

    Physicians’ Perspective of the Need for Legal Advocacy
    Janell Fuller, MD, Neonatology Fellow, U of C
    Rupa Nimmagadda, MD, Pediatrician, U of C

    Project Access Research Study Update
    Jocelyn Hirschman, MPH, Project Access Research Coordinator

    Highlights & Next Steps
    Julie Justicz, JD, Project Access Director

What is Project Access? 

    Medical, legal and case management collaboration to assist families of infants with special health care needs

    Four years of program operations, 2000–2004

    Partners: 

    Health & Disability Advocates
    Mount Sinai Hospital
    University of Chicago Children’s Hospital
    Sinai Urban Health Institute

Why Was Project Access Developed? 

  •  Convenience and access for families
  •  Legal services on-site in medical care setting
  • Combined medical risk and socio-economic disadvantage of target families
  • Increased need for enhanced case management services
  • Proactive model
  • Address issues before crisis
  • Best practice model for providers

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
  • Helping families access broad range of social support services and developmental therapies

Who are Project Access Families?
- Medical Criteria

    Birth weight =1500 grams (3.3 lbs); or
    Birth weight >1500 with…

        History of grade III or IV intraventricular hemorrhage    
        Extracorporeal membrane oxygenation (ECMO)
        Major congenital anomalies requiring follow-up with two or more sub-specialists
        Neonatal seizures, abnormal neurologic exam or other high risk for poor neurologic outcome

Who are Project Access Families? 
- Other Criteria

    Low income: Total family income <285% of the federal poverty guidelines
    Follow-up primary care at the NICU follow-up clinic at each hospital site
    Family has custody of infant

Who are Project Access Families?
- Maternal Age

Who are Project Access Families?
- Maternal Race/Ethnicity

Who are Project Access Families?
- Socioeconomic Status

Project Access Intervention Flow Chart and Timeline

  • Copies of Flow Chart and Timeline in packets
  • Intervention typically lasts 12 months
  • These charts are guidelines, not rigid timetables

Nature of the Project Access Intervention

Services Addressed by Project Access 

  • Supplemental Security Income (SSI)
  • Medicaid/Kidcare
  • Temporary Assistance for Needy Families (TANF)
  • Food stamps
  • Early Intervention (EI)
  • Division of Specialized Care for Children
  • Housing referrals 
  • Landlord/tenant assistance
  • Immigration issues
  • Insurance problems 
  • Child care
  • Domestic issues
  • Women, Infant and Children (WIC) program 
        

Case Manager Duties

  • Outreach 
  • Screening 
  • Consenting Families
  • Assessment 
  • Service Plan Development
  • Coordination of Care
  • Benefits Counseling, Linkage & Enrollment
  • Care Monitoring 
  • Supportive Counseling
  • Reassessment
  • Disengagement 

Attorney Duties

  • On-site assessments of client legal needs 
  • Providing legal advice, counseling & representation on a range of civil legal issues 
  • Coordinating services with medical providers to ensure accurate & timely medical records accompany client public benefits applications
  • Benefits training, support & trouble-shooting with project case managers
  • Legal advocacy with public agencies to advance clients’ rights both individually & systemically

Institutional Differences Impacting Project Access
While the same basic program structure has been in place at both project sites, the differences in hospital size & structure have contributed to significant differences in how the project operates at the two participating institutions.

Institutional Differences
– Hospital Resources

    U of Chicago

        Large institution
        Close academic ties
        National reputation
        Significant monetary resources
        53 bed level III NICU serving more than 850 infants a year

    Mount Sinai

        Smaller institution
        Limited monetary resources
        35 bed level III NICU serving more than 400 infants a year

Institutional Differences
– Hospital Staff

    U of Chicago

        Inpatient staff: 2 social workers, 2 case managers, physical therapist, speech & swallow therapist, developmental therapist, nutritionist & Project Access case manager

        Outpatient staff: social worker, physical therapist, speech/swallow therapist, developmental therapist, nutritionist, nurse educator & Project Access case manager

    Mount Sinai

        Inpatient staff: Project Access case manager & hospital social worker only if social issues arise

        Outpatient staff: Project Access case manager, limited developmental screening by physical & occupational therapists, other services available upon referral

Institutional Differences
– Project Operation

    U of Chicago

  • Enrollment occurs just prior to NICU discharge b/c often unclear where infant will receive follow-up care
  • Relationship building occurs primarily in outpatient clinic rather than NICU
  • Case manager’s office is located in different building than hospital NICU
  • Project case manager is RN

    Mount Sinai

  • Enrollment occurs shortly after birth b/c all families return to hospital’s outpatient clinic
  • Relationship building occurs while in the NICU making transition to outpatient clinic smoother b/c case manager & attorney already know families’ situation
  • Case manager’s office located inside NICU
  • Case manager is social worker

Benefits of Collaborative Model
On-going connections between attorneys
& health care providers lead to:

  • Cross-discipline Information Sharing – enhances ability of medical, legal & case management professionals to advocate for family and assist them in accessing programs
  • Educational Opportunities – attorneys better understand medical model & medical professionals learn about patient benefits & service barriers
  • Collaborative Team Approach – medical, legal & case management staff actively work together to improve client access to benefits & services
  • Pro-active Service Model – intervention is designed to address problems before they reach crisis level
  • Generally leads to better legal representation and patient care

Advocacy Issues Arising 
out of Collaborative Model

  • Failure to transfer eligible kids from Medicaid to KidCare
  • Inappropriate enrollment in Medicaid HMOs
  • Medicaid transportation problems
  • Need for SSI streamlined application process
  • Problems in accessing Early Intervention system & disparities in services the system provides
  • Collaborating with other national groups working on medical-legal models to promote this method of service delivery

Documenting the Intervention

Intervention Manual 
– Primary Documentation Tool

  • Developed to document project’s intervention methods
  • Provides detailed description of the intervention, its development, implementation, and the factors effecting it
  • Working document that may be adapted as needed
  • Will be used to assist in replication of this or similar models in the future

Description of Case Managers Time

    

  • Case managers log their time spent working with project participants
  • Types of family contact measured:
  •  Supportive counseling (91%)
  •  Benefits counseling (100%)
  • Administrative advocacy (84%)
  • Intake/consent
  • Establishing NICU relationship
  • Case review with attorney

On average, they spend 11.4 hours on each client in the first 6 months

Description of Case Managers Time

    U of Chicago

        6.3 hours total time 
        9 face-to-face visits
      

    Mount Sinai

        15 hours total time
        18 face-to-face visits

Description of Attorney’s Time

  • Attorney also logs all her time spent with project participants
  • Types of contact with families:
  • Legal advice/counseling (100%)
  • Administrative advocacy (84%)
  •  Referrals
  • Hearings
     

On average, she spends 5 hours on each client in the first 6 months

Explanation of Time Differences

  • Significant differences in project operation at the 2 sites have impacted both the intervention’s implementation & service delivery
  • Differences in institutional size, structure & resources all contribute to case manager time variances between the 2 sites

Factors Contributing to Time Differences
Hospital Resources

    U of Chicago 

        Multiple resources available to families.

    Mount Sinai

        Few resources available to families

Factors Contributing to Time Differences
Case Manager Office Location

    U of Chicago

        Located in another building

    Mount Sinai

        Located in NICU

Case managers’ office location impacted both enrollment and NICU contact. Mount Sinai caseworker was more accessible to families because her office was right in the NICU, where they regularly came to visit their infants.

Factors Contributing to Time Differences
Case Manager Background

    U of Chicago

        Nurse Case Manager

    Mount Sinai

        Social Worker

Case managers’ educational background impacts their interaction with project families.  At Mount Sinai the social worker does supportive counseling with 100% of intervention families, while at U of C the nurse case manager does supportive counseling with 80% of intervention families.

Case Examples
- A Tale of Two Families
Michael Reese Health Trust 

Peer Review of  PROJECT ACCESS 
September 30, 2021

Laura Barnickol, JD, MSW
Project Access Attorney

Elaine Mister, RN
Project Access Case Manager at U of C

Minerva Esparza, MSW
Project Access Case Manager at MSH

Background 

Two cases with similar situations – typical project participants
Families were enrolled into study within few months of each other
Both have now graduated
Noticeable differences between the families’ responses to Project Access intervention
Family situations look very different at time of graduation 

Success Story
- Nina

    Mount Sinai participant

    Time spent with family 
    21.3 hours with Case Manager
    17.3 hours with Attorney
    Successfully linked family to 7 different public benefits programs, 3 additional sources of monthly income, 5 community resources & ensured stable housing 
At graduation mother reports that the intervention was extremely useful in helping her access & retain the benefits & services her family was eligible for

Unsuccessful Story
- TJ 

    U of Chicago participant

    Time spent with family
    19.9 hours with Case Manager 
    25 hours with Attorney
    Referred family to 7 different public benefits programs (family accessed 3), 3 sources of additional monthly income (family accessed 1) & 4 community resources (family accessed 1)
At graduation mother has no direct complaints about intervention, but feels like project did not provide much assistance & consequently, she did everything on her own anyway

Discussion about this Dichotomy

  • Who does this type of intervention work for?
  • What are its essential elements?
  • What is the best setting for this type of intervention?
  • What impact does the case manager’s training/education have on the intervention’s outcomes?
  • Physicians’ Perspective on the Need for Legal Advocacy

Perspective from the Neonatal Intensive Care Unit (NICU)

Michael Reese Health Trust 
Peer Review of 
PROJECT ACCESS 
September 30, 2021

Janell Fuller, MD
Neonatology Fellow, U of C

Who are High-Risk NICU Patients?

    Very low birth weight infants 
    <1500g or < 3.3 lbs
    Respiratory distress syndrome (RDS), interventricular hemorrhage (IVH), retinopathy of prematurity (ROP), etc… 
        Heavier infants with serious medical problems
        Birth asphyxia
        Lung/heart disease requiring extracorporeal membrane oxygenation (ECMO) 
        Major congenital anomalies

Trends

    Increased number of very low birth weight infants

Prematurely Incidence

Trends

    Increased survival of NICU infants
    1915 through 1997: overall mortality for premature infants (<37 weeks) has decreased by 93%

Current Survival Rates

Sick Babies Lead to Sick Children

  • High risk for chronic medical problems
  • Chronic respiratory problems
  • Visual and hearing deficits
  • Neurological impairments
  • Growth deficiencies
  • Long term developmental problems
        

Sick Babies Lead to Sick Children

  • High re-hospitalization rates
  • Low birth weight infants are 5X as likely to be readmitted to the hospital in comparison with healthy newborns
  • Multiple follow-up appointments after discharge
  • Number of follow-up appointments with different doctors averages four per infant 
  • Multiple appointments for other needs

Physical therapy, occupational therapy, developmental therapy, speech, nutritional counseling…
    
Compounding Socioeconomic Factors

  • Poverty
  • Poor access to appropriate health care
  • Low maternal education
  • Inadequate social support

Conclusions

Increased number of high risk infants + Increased survival of high risk infants = Increased social burden 
and increased resource need

Conclusions

Current resources are allocated to NICU hospitalization with very little investment toward follow-up needs

Perspective from the Pediatric Clinic
Michael Reese Health Trust 
Peer Review of 
PROJECT ACCESS 
September 30, 2021

Rupa Nimmagadda, MD
Pediatrician, U of C


The Pediatrician’s View

    NICU graduates are medically complex 
    “Scary”
    Time-consuming
    Beyond expertise of MD alone
    Solution is “medical home”
    Multidisciplinary approach for high-risk needs
    Includes therapists, registered dietician, etc.

The Social Component

    Social factors exert a profound influence on the health of children
    Early childhood is designated a “critical” period for brain development
    This is the basis for early intervention programs & services
    Effectiveness of these programs persists into early school years

Targeting Vulnerable Populations

Targeting Vulnerable Times

The Physician’s Perspective

    Awareness
    Social factors exert strong influence on health
    Recognition
    The provision of health care depends on access
    Realism
    Resources to overcome social barriers are often beyond our reach

Physician Training

   No formal introduction to social services 
   Social service systems = complicated forms & difficult, ineffective advocacy
    The result is frustration due to inability to help your patients

Making Treatment Possible…

    Diagnosis     Developmental Delay
    Treatment     Therapy
    Obstacles     Immediate basic needs
                        Follow-up with Early Intervention Program (EIP)

    Intervention  Securing Supplemental Security Income (SSI) benefits
                        Navigating through EIP

Making Treatment Possible…

    Diagnosis     Poor growth / failure to thrive
    Treatment     Increased calories
                        Frequent follow-up
    Obstacles     Transportation, no phone
                        Expensive high-calorie formula
    Intervention WIC access for formula change
                        Transportation assistance
                        Case manager contact with appointments

Value of Legal Advocacy 
& Case Management

    Means for effective & efficient advocacy within complex social service systems
    Integrates social factors into medical care
    Socially & culturally competent health care 
    Places solutions to social barriers within reach
    Improves health care delivery to highest risk infants

Conclusions

Project Access Research Update

Evaluation of Project Access
Overall Objectives

  • To determine whether Project Access improves the high risk baby’s receipt of services after NICU discharge
  • Do they receive more services for which they are eligible?
  • Is there less delay in receiving services?
  • Are there fewer lapses in these services?
  • What are the systemic obstacles to the receipt of services? 

Evaluation of Project Access:
Overall Objectives

  • To determine whether Project Access improves outcomes for the high risk baby after NICU discharge
  • Do they miss less scheduled clinic appointments?
  • Are they re-hospitalized less?
  • Are they growing and developing optimally?
  • Do they and their families experience a higher quality of life?

What is NIOS?

    NICU Infant Outcomes Study (NIOS): Randomized Controlled Trial of Project Access Services
    Eligible infants are identified, recruited & consented in the NICU
    Randomized into either the intervention or control group (2:1)
    Families are followed-up in the hospital’s clinic until 1 year corrected age 
   

What is NIOS?

    Battery of standardized and research team designed instruments are administered to measure:
    Compliance with scheduled care
    Re-hospitalization and frequency of ED visits
    Growth and developmental outcomes 
    Utilization of services
    Maternal quality of life and parental stress


Screening for NIOS Eligibility
- NICU of Both Hospitals


Enrollment into NIOS
- Mount Sinai Hospital 

Enrollment into NIOS
- University of Chicago

Follow-up of NIOS Families

Withdrawal from NIOS

    To date, 20 families have withdrawn from NIOS
    Reasons for withdrawal
        8 actively withdrew from study
        6 infants died
        3 entered DCFS custody
        3 lost-to-follow-up

Who are Project Access Families?
-Baseline Psychosocial Data

    Extensive baseline data is being collected on:

        Social support, stress, locus of control, quality of life
    This (or these) data will be used to:
        Describe study participant characteristics
        Control for confounding effects of these characteristics on the study outcomes
        Examine whether the effects of Project Access are modified by these characteristics

Who are Project Access Families? 
- Maternal Psychosocial Characteristics

Who are Project Access Families? 
- Social Environment

Who are Project Access Families?
- Social Environment, cont.

Who are Project Access Families?
- Social Service Needs

Who are Project Access Families?
- Conclusion

    Impoverished mothers of infants at high-risk for poor medical and developmental outcomes
    Commonly experience more stressful life events than demographically similar mother’s of healthy infants and often have less social support and poorer health
    Eligible for many social service programs like Supplemental Security Income (SSI), public aid (TANF), and Early Intervention (EI)
    Face numerous barriers that make them less able to comply with crucial follow-up care 

Highlights & Next Steps

Continuing Medical, Legal & Case Management Collaboration in Our Community

    Continue Project Access model at same two hospitals
    Expand Project Access to new sites; where socio-economic disadvantages are similar
    Broaden model to provide legal services back-up support to social workers and case managers at several sites; less intensive,  more general services
    Expand target population to include more families at outpatient pediatric clinics

Emergence of Medical & Legal Collaborations Nationwide

    Increasing recognition of efficacy of this model
    Boston Medical Center Collaboration with HDA
    Discussions with ABA Center for Pro Bono
    Search for local and national funders