Legal needs often reflect unmet social needs, which contribute more to individual overall health than health system interactions and interventions.Reference Bradley and Taylor1 Despite high legal needs, access to justice to resolve needs is poor, particularly among communities of color.Reference Greene2 Reasons for lower engagement with the legal system include prior negative interactions with the criminal justice system that subsequently impact views about the civil justice system, negative past experiences with public institutions, and decreased willingness to engage in any legal proceeding or to seek legal help as it counters personal narratives of self-sufficiency and may perpetuate stigmas surrounding need for assistance. Medical legal partnerships (MLPs) address individual and structural barriers to attaining optimal health. Little is known about how interactions with MLPs reflect broader concepts of access to justice.
Screening for social determinants of health can unmask unmet social and legal needs and is recommended by national medical organizations.3 Medical legal partnerships (MLPs) are situated to address multiple unmet social and legal needs.Reference Marple4 However, lack of data on utility of screening for legal needs and success of MLPs can be a barrier to sustained use.Reference Krist, Davidson, Ngo-Metzger and Mills5 Beck et al. recently showed that use of an MLP reduced readmissions in the year subsequent to its use, demonstrating a positive health impact from MLP use.Reference Beck6 The purpose of this qualitative study is to examine the MLP experience from a 360-degree perspective, reporting legal partner data on case statistics and resolution, corresponding available medical data, and parent perspectives on their experience with the MLP, its impact on health and relationship to accessing justice.
Methods
We conducted a modified grounded-theory constructionist qualitative cross-sectional study of parents who were referred to a medical legal pilot program at a tertiary children’s hospital to evaluate the experiences of parents and outcomes of children, with an emphasis on health impact. Parents of children who were referred to the MLP between January 2019-December 2020, who spoke English or Spanish and who consented to the sharing of their legal data with the research team were invited to participate in a semi-structured interview about their experience. The interview period was selected to deliberately include sampling of parents pre- and post- onset of the COVID-19 pandemic, with January 1, 2020 used as the cut-off for post-COVID referrals. Invited parents specifically consented to recorded interviews and to the extraction of clinical data about their child from the medical record. Parents who provided this specific consent were interviewed. The study was approved by the institutional review board of the principal investigator’s institution.
The purpose of this qualitative study is to examine the MLP experience from a 360-degree perspective, reporting legal partner data on case statistics and resolution, corresponding available medical data, and parent perspectives on their experience with the MLP, its impact on health and relationship to accessing justice.
Interviews were conducted by 5 study team members (2 English speaking and 3 Spanish speaking) specifically trained on the interview guide for the study. The principal investigator either conducted or directly observed some interviews with both English and Spanish speaking study personnel who conducted interviews, in order to ensure consistent application of the study interview guide and approaches to probing where necessary.
The interview guide included several pre-defined domains of interest including questions about how the parent perceived their referral reason with respect to a need for legal assistance, their experience with the MLP process, perspective on MLP outcome/satisfaction, and the impact of the MLP on health. The interview guide underwent iterative revision. As early interviews indicated that educational issues were common, the interview guide was modified to include the role of educational issues as the primary referral reason or a concomitant concern.
Interviews were transcribed verbatim. Transcripts were entered into Dedoose and coded by two raters between February 2021 and May 2022, with discrepancies resolved by principal investigator review and consensus between coders. Codes were generated in an open coding process within predefined domains that included perceptions about access to justice including barriers and motivators to pursuing legal services, pre-MLP attempts at problem resolution, characterization of the legal issue, access to the MLP, experience with the MLP including wait time for services, MLP process and outcome, satisfaction with MLP involvement, and educational concerns.
Data was also collected from the participant’s legal and medical records to characterize the study population, including sociodemographic characteristics, parent health literacy, compliance with flu vaccination as a measure of access to preventive care, case characteristic and case disposition. Legal data was obtained from our legal partner with client consent; medical data was extracted from patient medical records. All medical and legal data were entered into Excel and stored in a restricted folder on a network drive. This file was subsequently deidentified and imported into STATA for analysis of study population characteristics. Descriptive statistics are provided for these data. Fisher’s exact test was utilized to examine associations between sociodemographic variables (gender, race, ethnicity, language, insurance, health literacy, Child Opportunity Index (COI), household size and county) and legal problem categories as well as case disposition.
Results/Findings
Sample Characteristics
A total of twenty-five individuals consented to participate. The median age of children for whom an MLP referral was made was 17 (interquartile range 7, 20). Seventeen children were male and eight were female. The majority of the population was Other/Multiracial (n=12, 44%), with White (n=8, 32%), Black (n=3, 12%) and Asian (n=2, 8%) also represented. Over half of the population identified as Hispanic (n=13, 52%). Sixty percent of participants primarily spoke English (n=15, 60%), while forty percent (n=10, 40%) spoke Spanish. Most respondents (n=22, 88%) were publicly insured or mixed private/public insurance (n=1, 4%), while two (8%) had no insurance. The majority of referrals were made for patients with endocrine (n=7, 28%), respiratory (n=6, 24%) or gastroenterological (n=3, 12%) diagnoses. Most children were also medically complex, having more than one specialist providing care (n=18, 72%). Most had not received a flu shot, a marker of routine care (n=14, 56%). The mean household size for referred children was 4 (standard deviation 1.7). Most children lived in neighborhoods with low or very low child opportunity index (COI) (n=11, 44%), with nine children (36%) living in moderate COI neighborhoods, and five children (20%) living in high or very high COI neighborhoods.
Ten interviews (40%) were conducted with parents of patients referred prior to the onset of COVID, and fifteen (60%) were conducted in parents referred after the onset of COVID. The majority of parents (n=18/19, 94%) for whom a health literacy level was documented had adequate health literacy, with one (6%) having low health literacy. Twenty individuals had problems in a single legal category, while four had two categories of legal problems and one had three. Across the twenty-five cases, the breakdown of legal problem categories is shown in Table 1. The majority of cases involved education (7/25, 28%) or family (7/25, 28%) issues. Public benefits cases included social security concerns including overpayment or reduction/termination, temporary assistance for needy families (TANF) and supplemental nutrition assistance program (SNAP) enrollment. Education issues included cases involving individual education plans (IEPs) and 504 plans. Housing issues included housing conditions concerns and evictions. Family issues included guardianship of disabled adults, domestic violence, and child support. Immigration issues included residency enrollment. Health issues were related to insurance enrollment. The majority of cases involved extended service (12/25, 48%). The breakdown of legal service involvement is shown in Table 2.
Table 1 Categories of Legal Problems
Table 2 Level of Legal Service Involvement
There were no significant associations found between sociodemographic variables and legal problem categories. Ethnicity was associated with case disposition with those identified of Hispanic origin more frequently requiring extended or full representation (9/9, 100%) compared to those of non-Hispanic origin (8/14, 57%), p = 0.048. Language was associated with case disposition with those who identified as Spanish speaking more frequently requiring extended or full representation (9/10, 90%) compared to those who identified as English speaking (9/15, 60%), p = 0.045. Timing of referral was associated with case disposition with those who were referred post-COVID more frequently requiring extended or full representation (14/15, 93%) compared to those who were referred pre-COVID (4/10, 40%), p = 0.014. Finally, county was associated with case disposition, although the small numbers in all non-Cook County locations made these associations likely not meaningfully significant.
Parent Experiences with the MLP
Multiple reasons emerged for referral to MLPs including education issues (Participant 2, Participant 14), housing issues (Participant 10, Participant 14), public benefits (Participant 3, Participant 15), disability rights and need for assistance with activities of daily living (Participant 2, Participant 20), health insurance (Participant 17, Participant 15) and guardianship (Participant 38, Participant 43). Individuals were connected to the MLP through the Children’s Hospital. Some parents reflected that this trusted entity helped, “I was on the family advisory board…at Lurie… I saw [someone] that I used to work with… I was telling her the story [and she] referred me to legal.” (Participant 2). Most participants indicated referrals were made through their doctor (7 participants) or social worker (9 participants), although referrals through a nurse, and family advisory board were also made. The remaining participants indicated they were connected generally through the Children’s Hospital. The majority of parents described no perceived delay in connecting to the MLP (Participant 18, Participant 19), while some parents noted a wait time of one to five months to be connected to the MLP (Participant 16, 45, 51). Parents described that MLP staff quickly understood their problem, which facilitated the process “[The] person at the legal services organization knew exactly what I needed as soon as I relayed information to her.” (Participant 13 and Table 3). Beyond understanding the legal problem, however, some participants commented on the MLP contact being able to understand the lived experience of the clients (Participants 26 and 30, Table 3). Participants noted that their MLP contact stayed in communication with them until the issue for which they were referred was resolved, frequently updating and communicating with them throughout the process. One participant remarked, “once the school like started to take me seriously, she kind of like stayed on until I had the actual documentation in hand that I needed. So, like he had gotten his IEP, with all of his minutes and everything that he was entitled to. Until she got that, she kept in contact with me. And then once we got all of that done and it was kind of like a binding document, then that’s when she said if I ever needed anything to [try her first for] anything [and] that she was always there to help. And I could reach out at any time.” (Participant 13 and Table 3). Outcomes from MLP referrals varied (Table 3). In some cases, no legal remedy was available (Participant 2). In other cases, there was timely resolution of the legal issue (Participant 3). Other parents noted that involvement taught them skills for the future (Participant 13). Regardless of outcome, respondents rated their satisfaction at four (4 participants) or five (21 participants) out of a possible five, and overwhelmingly described positive experiences with the MLP, noting that the legal aid organization was committed, eager to help, knowledgeable and informative (Table 3).
Table 3 MLP Experience
Impact of MLP Experience on Health of the Child
Respondents commented on variable impact on health following participation in the MLP (Table 4). Some noted no specific health impact, particularly when the legal issue for which the referral was made was not directly linked to access to healthcare (Participant 13). Others noted positive direct health impact from MLP engagement, including physical, emotional and mental health, and improved access to care (Participants 10, 23, 26, 47, 51). Finally, parents noted indirect health impact on the child secondary to improving finances, access to providers through guardianship and alleviating parental stress, leaving parents more available to attend to the child (Participants 10, 18, 26).
Table 4 MLP Health Impact
MLPs and Access to Justice
Parents noted multiple barriers to accessing legal services (Table 5) to resolve unmet social needs and, despite having problems lasting months (Participant 14) to more than a year (Participant 15), hadn’t sought legal services, “before the introduction to services in the clinic.” (Participant 15). Many were not aware that their problem could be framed as a legal issue (Participant 20) or that they would qualify for legal assistance (Participant 18). Without the MLP, the majority noted even if they were aware of the legal nature of their problem, they would not have been able to secure legal assistance (Participant 13). For those who had contemplated legal assistance, they had not reached out previously due to cost, not knowing how to connect to legal services, mistrust of lawyers, and wanting to be law abiding/avoid aggressiveness of legal intervention (Participants 2, 26, 43, 45). Some respondents reported trying alternative strategies prior to legal intervention, including letters from physicians, making their own appointments for access to benefits, and contacting the public health department (Participants 13, 26, 30). At least one respondent directly acknowledged the lack of success with alternate strategies (Participant 26). Individuals were motivated to pursue legal assistance for multiple reasons, including failed prior attempts at resolution (Participant 13), inadequacy of alternative options (Participant 18), and the difficulty in navigating programs (Participant 12), particularly in the disability setting (Participant 2). Involvement in the MLP invoked perceptions of access to justice (Table 5). Some reflected that their legal problems raised justice/fairness and equity considerations and, in some cases, direct civil liberties violations that could benefit from legal recourse (Participants 2, 33, 48). Others noted that access to justice is a fight, remarking that parents will fight for their children’s needs and that legal assistance in the fight is sometimes necessary (Participant 13, 33). Finally, some noted that MLP involvement empowered them for the future. (Participants 10, 13, 23, 33).
Table 5 MLPs and Access to Justice
Table 6 Influence of the COVID-19 Pandemic on MLP Experience/Utilization
Parents also noted indirect linkages to justice. Many commented that the MLP service was necessary, and that without it, they would not have been able to resolve their problems (Participants 2, 10, 33, 39, 47). Some highlighted the critical role that the client’s doctors and hospital played in providing a warm handoff to legal services (Participants 3, 33), although some perceived the lawyer to be a hospital lawyer (Participant 18). The MLP served an important educational role for parents, in giving them the information necessary to address their own situation and to give them the tools to facilitate peer education about legal issues facing other parents (Participant 40). In addition, parents noted additional unanticipated benefits of MLP involvement including value in sharing their story (Participant 2), making their issue visible (Participant 20), and making them feel validated (Participant 13, 26).
Impact of COVID
While the interview guide did not directly solicit information about the impact of COVID, interviews were conducted pre- and post- onset of COVID (2019 defined as pre-COVID and 2020 defined as post-COVID), in order to assess whether the pandemic impacted approaches to legal problems, or the use of legal resources. One respondent noted that they were willing to “give” on their issue, which seemed of lower magnitude in the setting of COVID (Participant 33). Others commented that advocacy was stalled, and a resolution was less attainable in the setting of COVID (Participants 12, 40). Another respondent commented, however, that loss of legally enforced pandemic mitigation measures, like mandatory masking, exacerbated negative health impacts on their child’s health condition (Participant 33).
Discussion
We found that the majority of patients referred to a medical legal partnership in a tertiary care children’s hospital were publicly insured and medically complex. Almost half were Spanish speaking. Individuals were referred from very low/low to high/very high COI neighborhoods, suggesting that legal problems occur across variable socioeconomic statuses. Although most were publicly insured, it is likely that some children qualified for public insurance based on complexity rather than income.
The majority of referrals were for education or family issues. Speaking Spanish, being identified as Hispanic ethnicity, and being referred post-COVID increased need for extended legal services or full representation. Patients identified as Hispanic ethnicity and those who spoke Spanish may have required extended services as guardianship issues were common in this group and would have necessitated court involvement to obtain guardianship. It is not clear why those who were referred post-COVID required extended or full representation though it is possible that legal issues became more complex and/or delayed during the pandemic, necessitating additional time to achieve resolution.
Most parents reported a positive experience with the MLP, noting the connection was made through their child’s hospital, a trusted entity. Regardless of whether a legal remedy was available, parents noted that MLP staff were committed, eager to help, knowledgeable and informative. Most parents noted direct or indirect positive impacts on their child’s health from MLP involvement, commenting that alleviating parent stress related to the legal issue for which the child was referred allowed the parent to better focus on the child’s other health needs. Making referrals through the child’s doctor and/or hospital approximates a “warm handoff,” a technique for referring from a known individual to a new provider, which has been recommended as a strategy to increase engagement with new providers.Reference Davis7 Positive health impacts from MLP involvement are also consistent with Beck et al.’s report of decreased readmission rates in the year following MLP involvement. In that study as well, referrals to an MLP were made through a primary known provider. We found, as Beck et al. hypothesized that positive effects stemmed both from relieving legal needs not directly related to ill health as well as conditions related to illness.8 Our findings suggest that identifying and referring for legal needs through the patient’s known provider can be a useful tool to connect parents to legal services. More widespread screening for social determinants of health may uncover greater numbers of individuals for whom MLP referral may be indicated and, if services are utilized, may lead to more positive health outcomes.
Despite an overall positive impression of the MLP, individuals still reported barriers to seeking legal services including being unaware that their problem was a legal issue, lack of access to legal assistance, concerns about cost, and a desire to avoid legal involvement and desire to be perceived as law abiding. Many of these factors align with concerns about trust outlined by Greene.9 Improving trust, through use of mechanisms like warm handoffs, may lead to increased engagement with MLPs and improve access to justice. Participants commented that access to justice requires a fight, which suggests that the civil justice system is in opposition to individual needs, also consistent with Greene’s report that negative prior experiences with the justice system can impact future conceptions about justice. Respondents also reported positive effects of the MLP experience through empowerment — teaching them skills for future problems, allowing them to have their story heard and validated and through the opportunity to educate and assist their peers. Empowerment through peer assistance may support development of community-based centers for social justice that could include peer referral in addition to medical referral, providing an alternative pathway to accessing justice.
Based on our findings, we developed a conceptual model for access to justice (Figure 1). The traditional pathway reflects current referral processes, where screening more widely may be used to improve referrals. However, consideration might also be given to development of community centers for social justice, as an alternate pathway to empower clients and potentially improve engagement through referral from community members, which may be seen as trusted messengers. Access to justice through community, people-centered, approaches has been attempted internationally.Reference Maurino10 Within such centers, the use of trusted messengers — individuals within the community who other community members recognize as part of the community — may also improve referrals for legal or other community services to facilitate access to justice and potentially improved health.Reference Cornish11
Figure 1 Conceptual Model for Medical Legal Partnerships and Access to Justice
There are important limitations which must be acknowledged about this study. The study was conducted in a single center with one MLP program. The population was diverse but may not be reflective of other MLP demographics. Additionally, interviews were conducted with those who had pursued legal services and consented to participation, thereby excluding those who were referred and did not pursue services, leading to twenty-five respondents. These factors may limit generalizability of our findings. However, the in-depth qualitative approach and reaching saturation of themes mitigates these limitations. Finally, most cases referred for legal services did not involve emergent concerns and were able to be resolved. An MLP with a different case-mix might have different outcomes. This study therefore supports future work evaluating outcomes from referrals to multiple medical legal partnerships, including assessment of why individuals do and do not pursue services.
Conclusion
Medical legal partnerships are an important vehicle for access to justice. Employing strategies such as warm handoffs and the use of trusted messengers may increase engagement with MLPs. Increasing referrals to legal services through screening or the use of community centers for social justice with peer referral may also lead to increased uptake of legal services and improved health.
Acknowledgements
The study team would like to acknowledge Jairo Chavez for his assistance in project execution. The autors have no conflicts of interest to disclose.
