PROJECT ACCESS: A Medical, Legal & Case Management Collaboration (2000 - 2004)
ABOUT THE PROGRAM
Project Access was developed by Health & Disability Advocates, in collaboration with two participating Chicago area hospitals: Mount Sinai Children’s Hospital and the University of Chicago Children’s Hospital. Its goal was to implement, describe and test an intervention designed to provide a greatly enhanced support system to families of infants newly discharged from the hospitals’ Neonatal Intensive Care Units (NICUs) so that these families were better able to follow the medical care plans prescribed by their neonatologists at the time of discharge. Compliance with follow-up medical care is crucial to the health and development of these infants; however, many families are without the resources necessary to follow through on these plans.
In most cases, hospitals have not seen it as their responsibility to help families obtain essential logistical resources that would enable them to follow through with their infant’s prescribed medical care plan. Even if neonatal intensive care personnel were to assume this responsibility, they typically do not have the time, training, or resources to help families effectively overcome their multiple logistical barriers to compliance.
Project Access case managers and attorneys worked closely with families from the time their infant was first admitted to the NICU and continued to provide services throughout the child’s first year of life. Designed to be proactive and accessible, Project Access helped families identify and receive needed financial, medical, developmental and educational supports for their infants and themselves.
The young parents and their infants who were the primary recipients of Project Access services faced an array of challenges. Most of the factors that place young women at high-risk for delivering low-birth weight infants (such as poverty, lack of pre-natal care, teen pregnancy and limited education) also present risks to the neonate during his/her first few years of life. These mothers need a lot of support as they prepare to take on the challenge of caring for an infant who is medically fragile or has special health care needs.
Health & Disability Advocates and its hospital partners initiated Project Access understanding that NICU infants have complex, chronic medical problems that place them at higher risk for post-discharge mortality and morbidity from acute and chronic illnesses and long-term developmental and emotional difficulties. Project Access was designed with these families in mind to help improve parental compliance with post-discharge medical and developmental interventions.
Addressing the Problem
By helping families obtain essential logistical supports, the Project Access model allowed the neonatal care teams at the participating NICUs to take responsibility for assisting families to comply with their infants’ medical service plans.
The Project Access case manager first identified eligible families upon the infant’s admission to the NICU. During the infant’s stay, the case manager obtained consent from the family for participation in Project Access. Participating families then received enhanced services from the Project Access case manager and staff attorney. All families worked closely with their case manager and attorney to complete a Family Service Plan that proactively planned for their needs. In addition, families received information about and assistance with enrollment in a range of support programs, such as: SSI benefits; Medicaid/KidCare; private insurance coverage concerns; TANF/Public Aid; Unemployment Insurance Benefits/Workers Compensation; Food Stamps; WIC; Early Intervention; and DSCC. At discharge, the family received assistance with both their transition to the community and the hospital’s outpatient clinic.
After discharge, the case manager and attorney met with the family at every outpatient pediatric clinic visit (usually every 2-4 weeks), and evaluated the family’s continued needs, providing assistance as necessary. The Project Access staff attorney stepped in when families were denied benefits, filing any necessary appeals and representing them at administrative hearings. The staff attorney also provided representation in other legal matters such as housing, domestic violence and child support cases.
The Project Access approach to client services is based on a multi-disciplinary service delivery model. Team members received support, training and resource materials from Health & Disability Advocates through regular training sessions and a special website. In addition, epidemiologists at the Sinai Urban Health Institute designed and implemented a randomized-controlled study of Project Access services. This study, entitled the Neonatal Infant Outcomes Study (NIOS), was designed to evaluate whether the program: 1) increased parental/caregiver compliance with post-discharge care; 2) improved medical/developmental outcomes for the infant; 3) enhanced quality of life for parents, caregivers and infants; and 4) increased utilization of support services among high-risk NICU graduates.
Project Access officially ended in December 2004. Its research was concluded and a final report was issued in spring, 2005. The program’s comprehensive program and research results can be seen in its final report which can be downloaded from this website. For additional information on Project Access contact Amy Zimmerman or Stephanie Altman at 312-223-9600.
PROJECT ACCESS RESOURCES
The results are in! To see a copy of the Project Access Final Report click here.
Project Access has presented its results at numerous research conferences and meetings. To see a complete list of the Project Access Research Abstracts click here.
Throughout its four years, Project Access developed program materials used to operate the medical-legal collaboration and materials on a range of topics that case managers and attorneys used in working with participating families. To see all of the Project Access Program Materials click here.
For further information on current medical-legal collaboration activities at HDA, click here to go to the Chicago Medical-Legal Partnership for Children page of the HDA website.