OBJECTIVE: To determine the types of legal problems addressed by the Health Law Partnership (HeLP) and the impact of the legal interventions in pediatric patients with sickle cell disease (SCD) or its variants. We hypothesized that an interdisciplinary team that includes lawyers would positively affect the social determinants of health that affect patients with SCD.
METHODS: The HeLP database was retrospectively queried for all patients with the diagnosis of SCD or 1 of its variants who had been seen by the lawyers of HeLP between April 2004 and September 2010. Data collected in this cohort of patients included income level of the patient/client, the initial presenting problems, any patient/parent/guardian problems identified during the legal checkup, and the type of legal assistance provided. Estimated annualized financial outcomes were calculated.
RESULTS: From April 2004 through September 2010, 71 parents/guardians with 76 children with SCD were referred to the HeLP for legal intervention. Of the 71 parents/guardians, 33 were at <100% of the federal poverty level. There were 106 initial case problems identified in the 71 parents/guardians; 51 of 106 problems were directly related to the child. An additional 93 issues were identified during the legal checkup. Of 106 cases, 99 were closed with 21 resulting in a measurable gain of benefits.
CONCLUSIONS: In a cohort of families of children with SCD, incorporating access to legal services as part of the care plan resulted in a positive impact on these patients/parents/guardians. The impact was directly attributable to the intervention of the HeLP.
WHAT'S KNOWN ON THIS SUBJECT:
Socioeconomic factors can adversely affect health outcomes. Low-income children with chronic disease have more exposure to these factors and frequently experience poorer outcomes. Legal issues associated with low socioeconomic status contribute to these poor outcomes.
WHAT THIS STUDY ADDS:
An interdisciplinary approach to the care of patients with chronic disease that includes lawyers on the health care team can address legal issues previously not identified, improve access to services, and help to eliminate barriers to care.
Factors related to low socioeconomic status can adversely affect health outcomes. Poverty increases exposure to a variety of conditions that negatively affect health.1 Poor children are more frequently exposed to family violence and instability while experiencing less overall emotional and financial support. They have a higher likelihood of living in lower-quality, crowded housing situated in neighborhoods with higher crime rates and inferior schools.1 Furthermore, persons of lower socioeconomic status and associated ethnic minority status experience greater psychological stress and lack of control over their lives because of inadequate social support.2 These conditions often predispose to attendant legal issues as well.
Sickle cell disease (SCD) is an inherited, chronic hemolytic anemia that was first described by James Herrick in 1910, who noted “large numbers of thin sickle-shaped and crescent-shaped” red blood cells in the blood of a 20-year-old West Indian man.3 This genetic disorder, characterized by the presence of the abnormal hemoglobin, hemoglobin S, is one of the most common genetic disorders worldwide. SCD is present in ∼1 in 400 black people in the United States, whereas 1 in 12 has the sickle cell trait. People of African descent are not the only population affected by this disease. SCD is also present in Mediterranean and Middle Eastern populations. Factors related to low socioeconomic status can adversely affect health outcomes. Poor children are more frequently exposed to family violence and instability while experiencing less overall emotional and financial support. These same poor children have a higher likelihood of living in lower-quality, crowded housing situated in neighborhoods with higher crime rates and inferior schools.1 Furthermore, those of lower socioeconomic status and those of ethnic minorities experience greater psychological stress and lack of control over their lives that are results of inadequate social support.2
Thus, legal problems associated with poverty can potentially affect the health and well-being of the patients and families affected by SCD who depend on the system of health care to manage their chronic disease and address acute health issues. A model that addresses the barriers to access and/or provision of care faced by low-income children is the medical-legal partnership.4 A medical-legal partnership is a collaboration between a legal entity such as a law school and a medical entity such as a hospital or clinic formed to address the multiple determinants of health, including legal issues that might present barriers to patient health and well-being. These partnerships are guided by the recognition that a lawyer can help patients navigate the complex legal systems that hold solutions to many social determinants of health. The medical-legal approach to patient care can create family stability, improve access to education and improve access to care and other benefits.5,–,8
In 1993, the first medical-legal partnership for children was founded by Dr Barry Zuckerman to serve as a resource for patients/families at Boston Medical Center who have legal issues that impede their ability to get the care they need. Since then, >180 medical-legal partnerships have formed. In January 2009, a National Center for Medical-Legal Partnership (NCMLP) was created to serve as an informational, technical, and networking resource center for existing and emerging medical-legal partnerships.
In Atlanta, Georgia, 3 community partners built on this principle of interdisciplinary health care by creating the Health Law Partnership (HeLP) in 2004. HeLP is a unique collaboration among Children's Healthcare of Atlanta, the Atlanta Legal Aid Society, and the Georgia State University College of Law. This collaboration created a true interdisciplinary approach to patient care. HeLP became a community resource for referral by health care staff to attorneys with the medical-legal partnership for assistance in offering legal solutions to patient problems.
Recognizing that families of children with SCD frequently encounter legal issues related to their health and well-being and that those issues were being addressed by HeLP, we evaluated the use of HeLP with clients of families with SCD at our institution and the impact of HeLP's legal interventions on those problems. We hypothesized that HeLP intervention would be associated with significant improvements in care and cost savings and general benefit to the patients/parents/guardians.
The medical-legal partnership formed by Children's Healthcare of Atlanta, Georgia State College of Law, and the Atlanta Legal Aid Society provided a new model for the metropolitan Atlanta area with certain features novel to other medical-legal partnerships. A licensed attorney is located on-site at each of the 3 Children's Healthcare campuses. A law school clinic also assists in handling cases for patients referred by the medical-legal partnership. In addition, a law school class specifically addresses system issues that require legislative or regulatory intervention and affect the patients/parents/guardians.
The annual budget for the collaboration is approximately $750 000. Allocation of financial responsibility among the partners is ∼40% from the Atlanta Legal Aid Society, 40% from the Georgia State College of Law, 10% from Children's Healthcare of Atlanta, and 10% from other sources. The largest outlay is salary and benefits for staff attorneys and law faculty.
Social determinants of health are identified through a comprehensive “legal checkup” (Fig 1). The legal checkup is a series of questions modeled after the medical history and physical designed to identify other problems not initially recognized by the health care provider or the family. The legal checkup is performed in 2 stages and on any patient/parent/guardian referred to the HeLP. After initial contact, an intake interview is conducted to determine eligibility for services. The eligibility analysis includes determination of family income level and the legal problem identified by the patient/parents/guardians. Patients/parents/guardians are screened to identify legal problems beyond the scope of the HeLP, such as criminal matters and personal injury claims, and are referred elsewhere for these issues. Patients/parents/guardians are queried regarding problems with issues such as child care, disability claims, domestic violence, education access, employment, or substandard housing conditions. Affirmative responses determine further evaluation for opening a case.
All new initial case intakes are discussed at a weekly case-acceptance meeting conducted by HeLP. All cases are triaged for case priority, referral to a volunteer lawyer, and need for self-help assistance. Input regarding the medical problem of the patient/parents/guardian is solicited from the medical champion. A determination for whether the case should be assigned to a HeLP lawyer or to the law school in-house clinic for direct representation is made. Cases assigned for direct representation have a second, more-detailed evaluation performed.
Health care workers (physician, social worker, respiratory care professional, etc) who identify any legal issues may refer the patients/parents/guardian directly to the HeLP. Ongoing in-service educational programs are offered to familiarize health care providers with the types of legal problems with which the HeLP may provide assistance. Finally, some patients/parents/guardians self-refer after being exposed to readily available brochures or associated signage throughout the hospital.
Institutional review board approval was obtained from both Children's Healthcare of Atlanta and Georgia State University for this study. A descriptive analysis of a retrospective cohort of patients was conducted for this study. Data were obtained on all patients with SCD or a variant and/or their parents or guardians who were referred to the HeLP from April 2004 through September 2010. Data were obtained from a previously developed internal database created to collect patient/parent/guardian demographics and outcomes. Patients/parents/guardians provide informed consent for this database collection during initial HeLP intake. Data collected include self-reported family income level, legal case types, the nature of legal assistance provided, and the annualized financial outcomes. Each case is assigned a problem code (using a standard legal-problem list developed by the Legal Services Corporation [LSC]) that describes the type of legal case.9 After completion of the legal intervention, the closed case is assigned an LSC closing code that categorizes the level of service provided.10 Benefits were calculated on the basis of an estimate of the present fair-market value of the individual benefit obtained. Annualized financial outcomes were also estimated from the database on the basis of the same methodology. The database was reviewed to determine family demographics, types of interventions, and outcomes. The average and overall financial impact attributed to obtaining public benefits, education, employment, health care, and housing was calculated; total annualized benefits are estimated to be $778 068. Additional benefits related to issues of family law and wills/estate planning are also identified.
Sixty-nine clients with 73 children with SCD or a variant were referred to HeLP during the 77-month period described (Table 1). Median patient age of affected children was 9.24 (range: 4.01–13.82). Of the reported case-subjects, 36 of 71 (49.3%) were female and 35 (47.9%) were male. In 2 cases there was no documentation of gender. Fifty-seven percent of school-aged patients were in school; 16 of 27 (59.3%) were in the appropriate grade. The median age of the clients was 35 (interquartile range: 30.7–40.0). Of the 69 clients, 31 (44.9%) were at <100% of the US federal poverty level, 8 (11.6%) were between 100% and <125%, 7 (10.1%) were between 125% and <150%, 11 (15.9%) were between 150% and <200%, and 12 (17.4) were at >200%5 (Table 2).
One hundred six initial case problems were identified at the time of HeLP intake; 51 (48%) of the problems were directly related to the child (Fig 2). The most common types of problems included education (25%), Social Security Insurance (19%), housing (17%), family law (13%), and wills/power of attorney (8%). An additional 93 issues were identified either during the legal checkup or at some point throughout the legal interaction (Fig 2). These additional issues were not legal in nature and were addressed by referring the patient/parent/guardian to the appropriate resources to help them address the problem. Of 106 cases, 99 (93%) had been closed by June 30, 2010. Of the closed cases, 21 (21%) resulted in measurable gain of benefits (Table 3).
The legal problems encountered included denial of benefits to people who appeared eligible. The denial then triggered the referral for the legal problem. The denial might have been caused by many factors including the inability to provide required documentation, inability to negotiate the bureaucracy, miscalculations, etc. The most common benefits included acquiring food stamps, obtaining Social Security Insurance or other health benefits, family stability, employment, housing, and/or education (Table 3). The greatest net benefit ($720 000) was ascribed to obtaining education benefits, followed by public benefits, employment, health care, and housing benefits. Three types of benefits were also described in the database: family stability, protection from violence, and wills/power of attorney. No annualized savings were ascribed to these benefits.
SCD is a complex, chronic disease accompanied by multiple complications including vaso-occlusive crisis, a predisposition to infection, and the need for frequent medical care. Providing quality care for patients with any illness, especially one as chronic and complicated as SCD, requires coordinated and repeated care over time. Engaging professionals from multiple disciplines and across institutional settings is a necessary part of that care, especially for low-income patients.
Boulet et al11 reported that, in a sample of patients with SCD, the parents of the patients encountered more barriers to accessing health care. In their study almost half of the families interviewed had income levels of <100% of the federal poverty level. Socioeconomic factors were determined to be a significant independent factor in physical and psychosocial health-related quality of life when assessing pain-related functional outcomes; socioeconomic factors were also cited as significant predictors of child functional disability.12 This occurs because socioeconomic factors that affect patients with SCD can trigger the pathophysiologic mechanisms of chronic hemolytic anemia and vaso-occlusion, which result in pain and tissue injury from ischemia and therefore necessitate access to medical care and/or hospitalization.13 Hypoxia, infection, fever, dehydration, and exposure to extremes of temperature can trigger painful events. In addition, patients have cited anxiety, depression, and physical exhaustion as precipitating causes of crises.13
It is important for patients with SCD to minimize their exposure to potential causes of pain crises and to things that may affect their compromised immune systems. It is unfortunate that for some patients, exposure to triggers of pain crises or other health conditions can exist right inside the home. Certain housing conditions can result in exposure to environmental risk factors and increased psychological stress.14 Such conditions could include inadequate heat or poor ventilation, mold and mildew, dust, rodent and insect infestations, or inadequate plumbing. Patients with SCD who are of low socioeconomic status are more likely to experience such risk factors. Moreover, poor housing conditions in which multiple occupants share a single dwelling might contribute to the risk of exposure to infectious diseases. In a recent study by Bundy et al,15 141 of 159 patients with influenza-related hospitalizations came from large metropolitan areas that are comparable to ours, where this type of housing condition is prevalent. Results of other studies have indicated that children with SCD who live in families with low socioeconomic status have higher hospitalization rates, more frequent emergency department visits, and more home health care needs and associated costs compared with children without SCD.16,–,19
Coordinated holistic care for patients, provided jointly by doctors and attorneys, can address barriers to optimum health for patients with SCD by addressing an array of underlying legal problems such as housing conditions.
In addition to extending the services provided by the medical-legal partnership, the law school clinic provides an interdisciplinary learning environment for members of the medical and legal professions. The clinic course component trains law students together with pediatric medical residents. These collaborative learning experiences teach future professionals to work together to address health-related issues for patients, including those with SCD.
The collaboration offers an interdisciplinary approach to patient care, and its services can reduce patient and family stressors such as family instability, access to health insurance or other public benefits that might assist the family, substandard housing conditions, and access to education. Only 57% of the children eligible for school were actually in school. Many of these children were referred to us because their need for accommodation at school was not being addressed and the parent or guardian might have made the decision not to send the child to school. To the extent that access to education and academic achievement is the path out of poverty, we must ensure that services, such as hospital homebound services and extended school-year services, help bridge the gaps created by a student's inability to attend school regularly.
A multidisciplinary approach that embraces lawyers as a part of the health care team can help identify and begin to address many of the social determinants of health that negatively affect the patient population. The ongoing relationship with lawyers as a part of patient care has resulted in the identification of additional patient issues that might not have been apparent initially and yet can affect a patient's health.
Our results are limited by the lack of satisfaction data from patients with SCD and their providers. As part of the future development of the partnership, feedback will be solicited from patients/parents/guardians and providers through an approved evaluation-and-research protocol. All patients/parents/guardians are now invited to participate in a preintervention telephone survey conducted 7 to 10 business days after initial case intake and a postintervention telephone survey conducted 1 month after each identified legal case is closed.
The retrospective nature of the data, the lack of statistical analysis, and small numbers might limit the interpretation of the results of this study and the global application of its concepts. However, our program has been collecting data on all encounters since its inception, and in the future we will to analyze these data to determine the impact of the partnership on patients with other chronic diseases such as asthma, developmental delay, heart disease, cancer, and diabetes. It is likely that not all patients/parents/guardians who had the need for legal assistance were identified. To address this deficiency, we are educating all the medical providers to identify problems during their patient encounters. We have developed a set of questions that will be embedded into the patient-interview process for all residents and attending physicians that are aimed at identifying a potential legal problem and triggering a referral to the HeLP. Another possible concern arises because the data were collected from interviews with family members, and answers to specific questions might be unknown, undocumented, or subjected to the bias of the person reporting or collecting the data. Finally, for certain types of assistance, the calculation of benefits was based on estimates of the present value of a service rather than actual cost, which can lead to either an overestimation or underestimation of benefits. These initial findings, however, suggest that the medical-legal partnership model, a new service not previously available at Children's Healthcare of Atlanta, has value-added benefit to the patients and the health care organization.
Combining the health care expertise of hospital professionals with the legal expertise of lawyers allows the health care team to effectively address the socioenvironmental factors that exacerbate poor health and results in a coordinated, interdisciplinary approach that improves access to care, patient health and well-being, and access to financial resources for many patients. In families of patients with SCD, medical-legal intervention through the HeLP was associated with positive financial value and demonstrable positive impact on the overall well-being of clients/families.
Further study will be important to better determine the additive impact of legal support to health care efforts on family satisfaction, physician satisfaction, and avoidance of cost through improved preventive care.
We thank, Susan McLaren, MPH, FACHE, independent evaluator, and Bridget Bier, office manager, for their contributions in collecting and analyzing the data in this report. We also thank James Fortenberry, MD, for his review of the article.
- Accepted August 31, 2011.
- Address correspondence to Robert Pettignano, MD, MBA, Department of Pediatrics, Emory University School of Medicine, 49 Jesse Hill Jr Dr SE, Atlanta, GA 30303. E-mail:
Dr Pettignano, Ms Caley, and Ms Bliss made substantive intellectual contributions to development of this article.
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
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- Copyright © 2011 by the American Academy of Pediatrics