If you were asked to name the most common childhood diseases, what would you say? Asthma? Diabetes? When most people are asked this question, they often name one of these diseases; rarely do they list a mental health disorder. However, mental health disorders are the most common childhood disease. According to the Child Mind Institute, about 17.1 million children in the United States have or have had a mental health disorder, which is more than the number of children with asthma, cancer, diabetes, and HIV/AIDS combined. Despite this prevalence, about 80 percent of children identified as having a mental health disorder are unable to access treatment.
In addition to accessing treatment, the child’s social and physical environment can further exacerbate existing mental health issues or cause more, as well as severely disrupt the child’s family stability. Consider the following statistics:
• 21 percent of low-income youth will experience a severe mental health disorder, compared with only 10 percent of youth in middle- and high-income families. Mental Health, Prevalence, youth.gov.
• 50 percent of youth in the child welfare system and up to 70 percent of youth in the juvenile justice system have a severe mental health disorder. Mental Health, Prevalence, youth.gov.
• 48 percent of families have to quit their jobs in order to care for a child with a severe mental illness; 27 percent are terminated from their employment. Eileen M. Brennan et al., “Employed Parents of Children with Mental Health Disorders: Achieving Work-Family Fit, Flexibility, and Role Quality,” Faculty Publications—School of Social Work (George Fox University 2007).
• Rates of suspensions and expulsions for children with a mental health disorder are three times higher than those of their peers. Mental Health, Effects, youth.gov.
• Youth with emotional disorders have the lowest graduation rates and highest dropout rates; only 32 percent continue on to postsecondary education. Mental Health, Effects, youth.gov.
• Up to 25 percent of the homeless population has a mental health disorder, compared with only 6 percent of the general population. National Coalition for the Homeless, Mental Illness and Homelessness (July 2009) (fact sheet).
• Individuals with a severe mental health disorder die as much as 25 years earlier than those without. World Health Organization, Premature Death among People with Severe Mental Disorders (information sheet).
• Approximately 20 percent of parents nationwide reported relinquishing custody of their child to the foster care system solely to access mental health treatment; in Illinois, a parent is giving up custody for this reason once every four days.
These conditions, called the social determinants of health, negatively affect not only the mental health of the child but also that of the family as a whole. Yet, in an overburdened mental health system treating only a small percentage of these youth, the external factors can rarely be addressed. A legal advocate, however, could help address most, if not all, of these conditions through the medical-legal partnership model.
Legal Care at Under the Rainbow
Through an Equal Justice Works fellowship generously sponsored by Walgreen Co. and Baker & McKenzie, LLP, I led the establishment of the first child and adolescent behavioral health-legal partnership in Illinois, working collaboratively with Legal Council for Health Justice, behavioral health clinicians, and Sinai Health System leadership. Based in Chicago, the project partners with Under the Rainbow, a program of Mount Sinai Hospital Medical Center of Chicago (Sinai). Under the Rainbow is a child and adolescent outpatient mental health clinic mostly serving impoverished families in some of the most violent neighborhoods around Chicago, such as North Lawndale.
The program—which joins law, psychology, social work, and medicine—integrates free, accessible legal assistance into the child’s mental health treatment plan to improve the mental health outcomes and stability of these families. To fully address these needs as the legal partner, I work on issues ranging from poverty, poor education, and community and family violence, to child welfare involvement. In the first quarter of the partnership, Under the Rainbow clinicians referred 25 legal issues within one of these categories, including access to more income through Social Security or public benefits, special education advocacy to obtain better services in school, or assistance navigating the foster care system. After intake interviews with the client and the client’s family, these 25 referrals turned into 42 individual clients with 93 individual legal cases. Some of these cases are kept in house while others, such as housing or criminal cases, are referred to other legal partners. Legal areas that are most frequently referred by the clinicians have been custody, child support, special education, supplemental security income (SSI) eligibility, and immigration.
Serving almost entirely children and families in poverty, Under the Rainbow provides mental health services to children ranging from infants to age 18 and some adults, such as adult family members or caregivers. Approximately 70 percent of Under the Rainbow clients are Latino and 30 percent are African American. These children live in violent neighborhoods where they regularly watch friends and family members get shot and killed. Nearly all of these clients live with post-traumatic stress disorder (PTSD) or some other form of trauma. Other common diagnoses include attachment disorders, attention deficit hyperactivity disorder, and depression. Many live with family members other than their parents or in the foster care system, and many have been abused or neglected at some point in their young lives. Frequently overlooked and without access to additional resources, the Under the Rainbow clients have many unaddressed legal needs exacerbating their mental health and preventing treatment to enable them to move forward.
By providing legal care through this type of interdisciplinary model, these children and families can be helped by (1) looking outside the system, (2) empowering the clinicians and clients, (3) becoming a member of the treatment team, (4) expanding system capacity, and (5) repeating the model.
Looking Outside the System
As discussed above, the social determinants of health heavily affect a child’s mental health and overall stability. Despite our knowledge of these external factors, our policies rarely prioritize or work to resolve them, leading to poorer health. Although the United States far exceeds other industrialized nations in health care spending, we rank near the bottom for health outcomes. This paradox is further investigated by Elizabeth Bradley and Lauren Taylor in their book, The American Health Care Paradox: Why Spending More Is Getting Us Less. Bradley and Taylor explain that although the United States is spending much more on health care, we are spending much less on social services that address those external factors. In fact, according to the Centers for Medicare and Medicaid Services, about 90 of the factors contributing to health status occur outside the health care system and in the realm of social services. Yet, the United States only spends 3 percent of its health care funding on these nonclinical factors. In other words, while other industrialized nations are spending $2 on social services for every $1 spent on health care, the United States only spends 55 cents on social services for every $1 spent on health care.
The most important lesson from these studies is that overall health cannot be addressed in a vacuum, especially mental health. While we now know that social conditions need to be addressed in addition to the health and mental health needs of our clients, health providers often lack resources or capacity to address everything. Even when funding is available to provide social services, legal barriers often prevent advocates from resolving a legal need for a client. Attempting to fix this problem, a physician in Boston hired a lawyer to help a patient with her housing needs. After realizing the positive effects of having a lawyer address a health-harming legal need (as this person’s asthma was affected by mold in her apartment), the medical-legal partnership model was born, according to the National Center for Medical-Legal Partnership. In the nearly 25 years since, over 300 of these partnerships have been created across the country. They vary in size and implementation, but all of them have the same goal: improve health outcomes by addressing legal needs.
While the spending paradox discusses the lack of funding for social services, leading to more health problems, this discussion is still missing the component of legal aid. Looking outside the health care system to social services or education is not enough. We must also look to the legal system for assistance, both for direct representation when clients face legal issues and for education and training.
Empowering Clinicians and Clients
After identifying ways to collaborate across systems to improve a child’s mental health, the next step is to provide education and training to those either working in or accessing the mental health system. Many legal needs can be negotiated or settled without a lawyer once a clinician, client, or family is given the tools to advocate for themselves. For example, after receiving training on special education law and rights, clinicians can attend a meeting with the school and advocate for the appropriate services. The same is true for family members.
In addition, providing a foundational knowledge on other social determinants and legal areas can ensure quick identification of legal needs by the mental health system, which can mean engaging the client sooner in the legal process and likely preventing a crisis. For example, on my first day on site at Sinai, a clinician met with an uncle who had been the foster parent to two nieces and a nephew for the past year and a half. The three children were all clients at Under the Rainbow and had seen dramatic improvement to their mental health since starting therapy. That day, the uncle received a notice from the child welfare agency, the Department of Child and Family Services (DCFS), stating the children were going to be moved to a non-relative foster home because the child welfare caseworker had been unable to make unannounced visits. With only three days to appeal this change of placement, the clinician immediately recognized the urgency of this legal issue, informed the uncle that he had a right to appeal the change, and walked him down to my office.
Because of the quick nature of the change of placement procedures, lawyers rarely get involved at such an early stage. Because the clinician had been empowered, this client was able to connect immediately with legal services. Then, using the clinician’s experience with the children and her expertise and understanding of the child welfare system, we were able to convince DCFS that it was not in the children’s best interest to be moved; rather it would be detrimental to their mental health. This partnership prevented that terrible outcome from occurring.
The same is true when empowering the client, family, and community. Know-your-rights trainings, especially when conducted jointly by both the legal and mental health partner, provide similar advocacy tools for clients to protect their rights and get appropriate services under the law. A grandmother caring for four grandchildren could be helped immensely just by being told what public benefits she had a right to and how and where to apply. Trainings for teenagers can help them understand their privacy rights under mental health confidentiality laws and prevent an abusive family member from accessing their mental health records. By providing additional tools to clinicians and the community, legal needs can be addressed earlier and often without a lawyer becoming directly involved.
Becoming a Member of the Treatment Team
Perhaps the most crucial step in making this model work has been the integration of legal aid into the mental health treatment setting. Medical-legal partnerships across the country arrange this aspect of the partnership in different ways. Some send referrals to the legal partner without seeing clients or clinicians on site while others have varying levels of on-site integration—from being on site only when appointments or trainings are scheduled to being on site for specific blocks of time each week or month.
Through the partnership with Sinai, I am on site at Under the Rainbow Tuesday and Friday afternoons for a total of 12 hours per week. Each week, I participate in the clinic’s weekly staff meetings, meet with clients, and consult with clinicians. Most families try to schedule an appointment before, during, or after their child’s therapy appointment. Many, with the clinician in tow, arrive at my office as walk-ins after a legal need was identified in their therapy session. When I’m not meeting with a client, my office door remains open for clinicians to stop in and discuss legal questions that are coming up with their clients. This on-site accessibility to the treatment team and family has been critical for several reasons, including meeting the clients where they are and quickly accessing the clinician’s expertise to help guide legal strategies and priorities.
Meeting the clients where they are. An important aspect of integration into the treatment setting is prioritizing the needs of the client, particularly with an urban population. Using a trauma-informed lens, I try to be aware of all the obstacles my clients face in traveling to appointments. Many of my clients cannot afford bus fare or cannot find or afford a babysitter to watch their children, so being on site helps clients make their appointments and feel more comfortable. To accommodate those who are employed, I have early evening appointment times available the days I am on site. If the appointment with me does not correspond with the therapy appointment for the child, then the child has access to Under the Rainbow’s waiting room and activities. But my physical presence does more than alleviate these transportation and cost barriers; it alleviates some of my clients’ overwhelming stress. For example, many clients may feel intimidated or uncomfortable going to an unknown building outside their comfort zone. In addition, about half of my clients are Spanish-speaking. While on site, I have access to the clinic’s interpretation services, helping bridge the language gap more quickly and efficiently. The simple fact that I am down the hall at Under the Rainbow with immediate access to all these resources means that the client’s stress and instability can already begin to dissipate.
Depending on the clinician’s expertise. Because the main goal of this collaboration is to improve the child’s mental health and family stability, the expertise of the clinician is necessary to help prioritize and address legal needs. The uniqueness of working beside a mental health clinician is their frequent contact with the client and family as well as the foundation of trust built between them. Once appropriate releases permitting clinicians to share information with me for the purpose of legal advocacy have been signed, the clinician will refer the client and family to me for legal intake. In most cases, this referral happens in person, providing an opportunity for me to gather background information on the client and legal issue from the clinician. This pre-intake consult can make a large difference in how I approach a meeting with a client.
For example, one clinician referred a special education case to me for a 15-year-old client. Prior to meeting with the parents, however, the clinician spoke with me about the client’s rocky relationship with his father, the father’s tendency to be verbally aggressive and controlling of the mother, the mother’s hesitancy to speak up when the father was in the room, and that the mother only spoke Spanish while the father spoke English and inaccurately translated conversations to the mother. With this background in hand, I was able to go into this meeting with both parents and make it clear to each that I needed to hear from them both and from their son. I brought in an interpreter to ensure the mother was receiving the correct information and felt safe communicating her thoughts about the case.
In some instances, after signing appropriate releases and having attorney-client privilege explained to them, a client or family will ask that the clinician be present for the intake appointment. Having the clinician present can help the client feel at ease, especially if I’m meeting with the child. At other times, the clinician will help clarify details that the client forgot or might not realize are legally relevant. As with the pre-intake consult, this speeds up the legal process in addition to alleviating stress for the client. It can also help prioritize legal issues as they are identified. Most of my clients are referred for one or two legal issues, such as special education or custody. Yet, during the intake appointment, I frequently discover additional unmet legal needs, such as eligibility for Social Security or public benefits, immigration status, or an insurance denial. As additional legal needs become apparent, the clinician can help determine which ones are more emergent or impactful on the mental health and stability of the client and family.
Finally, and most importantly, the clinician’s expertise is enormously helpful in resolving a legal matter. A large percentage of referrals have been for special education services. Although the clinician is working with a child weekly or biweekly for several months, that same child may have no services available in school. The clinician’s familiarity with the client’s needs helps guide what evaluations I should seek or whether or not a certain placement is the appropriate setting and least restrictive environment available. My weekly presence at the clinic eliminates the back-and-forth phone calls or emails often seen in traditional law practices, allowing me to quickly follow up and consult with a clinician as a legal case proceeds. Another example of the benefits of working collaboratively with the clinician are in family or child welfare–related cases. These cases often turn on the question of what is in the best interest of the child. The clinician’s work helps answer that question and often supports and guides my legal strategy in the case. My role as the attorney is simply to be the tool that carves a legal path to resolving a client’s needs.
Building System Capacity
The larger benefit of partnering lawyers and mental health professionals is the ability to build additional capacity in the system. Only 20 percent of youth can even access mental health services. Lack of access occurs because of many problems, including a small workforce, geographic inaccessibility, and lack of funding and resources. Working in this model provides an additional outlet to address these systemic concerns.
In fact, just by preventing and addressing legal needs immediately, the treatment of current clients can continue, allowing them to move more quickly through the mental health system and opening spaces for clients who ordinarily would not have received any services. In addition, having a lawyer on the ground working with the clinicians can help identify policy issues that can be addressed at an administrative, legislative, or judicial level. For example, this model can help promote research into alternative and community-based settings to treat the mental health needs of children by showing the importance of looking outside traditional silos. Or the legal team may identify a pattern, such as a burdensome process to obtain a release of information for a primary care physician to communicate with the emergency room psychiatrist who treated the same child two weeks beforehand. Seeing patterns emerge firsthand provide opportunities to develop informed advocacy strategies to address the gaps more holistically.
Repeating the Model
Since the start of the partnership with Sinai at the beginning of 2016, the number of identified legal needs has been astonishing. More important, however, have been the outcomes starting to come out of the collaboration between the legal and mental health sides. Among those outcomes, two children obtained stronger and better special education services; three children remained in their stable and loving home; another child, who is only six years old, was prevented from being kicked out of her school without appropriate steps to address her needs; a grandmother is about to obtain guardianship of her four grandchildren, which will allow her to more easily navigate the health and education systems; and many others are in the process of applying for or appealing denials of Social Security benefits.
The increasing success of this partnership would not have been possible without the dedication and hard work of the clinicians at Under the Rainbow and Sinai leadership. Without their passion, expertise, and desire to include legal aid in the services they are providing, many of these families would likely never have had access to an attorney. Partnerships that work directly with a mental health provider are increasing across the country, including a similar Equal Justice Works project working on veterans’ mental health in Chicago, another child and adolescent mental health project in New York City, and many others across the country focused on adults with mental health needs. To make a bigger difference and improve the mental health of these clients, just repeat these steps and watch the positive outcomes begin to build.
Keywords: litigation, children’s rights, mental health, legal-medical partnership