When Sam Johnson took his 5-year-old daughter, Alexis, to an appointment with her pediatrician at MetroHealth Medical Center in Cleveland, Ohio, in June 2014, he never expected to walk away with a team of lawyers who over the next year would assist him in removing legal barriers related to child custody, special education, Medicaid, and Temporary Assistance to Needy Families (TANF) benefits. Johnson’s life had recently taken unexpected turns.
Johnson had spent much of his life, juvenile or adult, in and out of the criminal justice system while dealing with a long-standing substance-abuse problem. Most recently, he went back to prison when Alexis was only a year old. During this most recent incarceration, Johnson decided to make some changes in his life now that he had a daughter who was relying on him as both parent and role model. He figured that he would take advantage of whatever resources were available to him in prison so that when released he could put himself in a position to create stability in his life. He registered for all available courses and earned a folder full of certificates showing all he had learned—everything from understanding addiction to anger management.
When Johnson was released from prison in December 2013, he was ready to see his daughter for the first time in three years. He was reunited with Alexis for her fifth birthday the following month. However, he was devastated by what he saw. Alexis’ appearance was disheveled, and she was clearly not being well cared for by her mother. When he spoke with his daughter, he found that she lacked very basic preschool skills expected for her age. She could not say the alphabet, count numbers, or consistently recognize colors and shapes. Johnson also found out that Alexis’ mother did not have stable and safe housing for herself, Alexis, and Alexis’ half-sibling.
Johnson’s first reaction was emotional. He was furious about the circumstances in which he found his daughter. Without realizing it, Johnson was personally witnessing how the social determinants of health affect children’s well-being. According to the World Health Organization,
[t]he social determinants of health are the conditions in which people are born, grow, live, work and age. These circumstances are shaped by the distribution of money, power and resources at global, national and local levels. The social determinants of health are mostly responsible for health inequities—the unfair and avoidable differences in health status seen within and between countries.
Johnson, drawing on the lessons he had learned and his new coping skills, recognized that there was a legal way to deal with Alexis’ situation. Rather than lash out in anger at Alexis’ mother, Johnson went to juvenile court and was awarded emergency temporary custody of Alexis. Johnson took Alexis for a doctor’s appointment at MetroHealth Medical Center in Cleveland, Ohio. Alexis was diagnosed with high lead levels and developmental delays; her health needs were met. Moreover, Alexis’ pediatrician recognized that Johnson and Alexis had unmet legal needs. In the same way that the pediatrician could refer a family to any other MetroHealth provider, she gave Johnson a referral to an on-site legal aid attorney.
The Community Advocacy Program: A Medical-Legal Partnership in Cleveland
For more than 13 years, the Legal Aid Society of Cleveland and the MetroHealth System have been working together through a medical-legal partnership called the Community Advocacy Program.
The Legal Aid Society of Cleveland is the fifth oldest legal aid organization in the United States and delivers free civil legal services in five counties of northeast Ohio. Legal Aid handles cases that affect basic needs such as health, shelter and safety, economics and education, and access to justice. The MetroHealth System is, like Legal Aid, a long-standing Cleveland institution and has provided health care, regardless of a patient’s ability to pay, to the area since 1837.
Legal Aid boasts a complex practice at the intersection of multiple areas of the law. The four goals of Legal Aid’s strategic plan guide its work, and all apply to work done in the medical-legal partnership. First, Legal Aid improves safety and health. Legal Aid secures safety against domestic violence and for other victims of crime, increases access to health care, and works to improve the health and safety of homes and neighborhoods. Second, Legal Aid promotes education and economic stability by ensuring access to employment, public benefits, and other income. Legal Aid helps clients access quality education because education is a proven route out of poverty. Third, Legal Aid secures decent and affordable housing by increasing housing stability and improving housing conditions. Fourth, Legal Aid ensures that the justice system and government entities are accountable and accessible. Legal Aid increases meaningful access to courts and government agencies for specific vulnerable populations, such as persons with limited English proficiency.
Medical-legal partnerships integrate lawyers in health care settings to help patients navigate the complex government and community systems that often hold solutions to many social determinants of health. For example, medical-legal partnerships lead to income supports for food-insecure families, utility shutoff protection during cold winter months, and mold removal from the home of asthmatics.
Together Legal Aid staff and MetroHealth medical providers practice preventive legal work and medicine through the Community Advocacy Program. The innovative partnership brings legal counsel into a variety of health care settings to assist patients and their families in navigating some of the social and environmental challenges to health. Lawyers and a paralegal from Legal Aid work alongside doctors, nurses, social workers, and other providers from MetroHealth to overcome legal barriers to patient health and improve community health through individual and systemic advocacy.
When the Community Advocacy Program originated in 2002, the legal side of the medical-legal partnership consisted of one attorney serving pediatric patient-clients at MetroHealth Medical Center. Since then, the program has expanded to include four attorneys and a paralegal, each focused on a particularly vulnerable population—children, Spanish speakers, pregnant women, the elderly, and individuals recently released from prison.
The Medical-Legal Partnership Referral
The Community Advocacy Program has integrated itself into the health care team at its MetroHealth sites. Upon identifying a legal issue harming a patient’s health, the MetroHealth provider completes a program referral order in MetroHealth’s electronic medical record system. The referral attaches to the patient’s electronic medical record. The provider hands the hard copy of the referral to the patient (or patient’s family member) to contact the program attorney or paralegal and complete a Legal Aid intake.
Without realizing it, Johnson was personally witnessing how the social determinants of health affect children’s well-being.
In Johnson’s case, the pediatrician identified that Johnson would benefit from speaking with the on-site Community Advocacy Program attorney to discuss the custody case, and she referred Johnson to the program. Johnson needed to convert the emergency temporary custody order to permanent custody of Alexis and had a number of questions about the conversion. The program enlisted the help of one of Legal Aid’s family law attorneys to handle the custody problem. After months of hearings, home visits, and interviews, the juvenile court awarded permanent custody to Johnson. Alexis’ mother would still be allowed to visit with Alexis, but the court acknowledged that Johnson had given Alexis a stable and safe home, had enrolled her in school, and was otherwise caring for all of her needs.
The Community Advocacy Program and Special Education Advocacy
Securing custody of Alexis was not the end of the Community Advocacy Program journey for Johnson, however. While meeting with the program attorney for the initial interview to gather information about the custody problem, Johnson handed the attorney a letter from the pediatrician outlining her concerns about Alexis’ developmental delays and educational needs. At that time the program agreed to represent Johnson for a special education case as well.
Alexis had not been identified as a student with a disability by her school district. However, the pediatrician’s letter that Johnson showed the Community Advocacy Program attorney was a request for the district to evaluate Alexis and determine her eligibility for special education due to the identified developmental delays and concerns related to communication and fine motor skills.
The primary legal issue referred to the Community Advocacy Program by MetroHealth’s Department of Pediatrics is the need for appropriate special education services for children with disabilities. The program has worked with the medical providers at MetroHealth to develop tools they can use to engage in educational advocacy both on their own and in collaboration with the program’s attorneys.
MetroHealth’s electronic medical record system contains letters that providers can easily complete to request either a special education evaluation or an individualized education program (IEP) team meeting to take up concerns or modifications of students’ special education services. These letters were created by Community Advocacy Program attorneys with the input of MetroHealth pediatricians to make the letters as effective and time-efficient as possible for medical providers to use. Patient information, such as name and date of birth, autopopulates into the letter from the patient’s electronic medical record. Providers click through a series of drop-down lists to select the most common concerns about how a child’s disability harms the child’s education. There is also an option for providers to add information not included in the basic template.
The Community Advocacy Program includes an informational component for each electronic medical record advocacy letter. For example, in Ohio a school district has 30 calendar days to respond to a request for a special education evaluation, and so the letter concludes, “I understand that the school must answer this request in writing within 30 calendar days.” Now the provider, the parent, and the school district all have the same information on the required next step. The program’s advocacy letters are available for the use of any MetroHealth provider, not just those who have a program attorney on-site, effectively leveraging the medical-legal partnership advocacy beyond its limited staffing resources.
The Community Advocacy Program has also developed the Karody Special Education Calculator, a pocket-sized device based on the design of a due-date-calendar wheel used by an obstetrician. However, instead of estimating due dates, the calculator points to the legal deadlines in the special education process. Low-income children with special education needs risk denial or loss of services because they are not evaluated in a timely manner. The calculator aids the explanation of special education processes and deadlines to parents and providers. It also alerts the provider to missed deadlines triggering the need for a program referral. To date, the program has distributed hundreds of Karody calculators to MetroHealth’s pediatricians and pediatric residents.
The Community Advocacy Program successfully advocated for Alexis to receive a special education evaluation. She was subsequently identified as a student with a disability. She now receives instruction at school from a special education teacher, speech-language services, occupational therapy, transportation, and other services as outlined in her IEP.
Johnson’s Continuing Journey with the Community Advocacy Program
The story for Johnson was not over yet. Over the next 12 months, Johnson kept in contact with his Community Advocacy Program attorney about new legal problems that continued to pop up in his life. Johnson’s TANF benefit was sanctioned. Again, the program enlisted a Legal Aid colleague to help. A state hearing was held, and the sanction was removed because the hearing officer deemed that the sanction had not been appropriately imposed. Around the same time, Johnson’s Medicaid coverage was incorrectly terminated. Again, Legal Aid resolved the matter, and Johnson’s health coverage was reinstated—this time without the need for a hearing.
Like many Legal Aid clients, Johnson had more than one legal problem that needed to be handled. For the Community Advocacy Program to bring down all of the legal barriers in Johnson’s life, his daughter’s pediatrician needed to recognize beforehand that to treat Alexis’ health conditions, the pediatrician also needed to tend to the social determinants of health that were affecting Alexis and her father. Further, the program and Legal Aid are especially attuned to the idea that clients’ presenting legal issue does not usually occur in isolation. Low-income clients are often facing a number of legal hurdles, and Legal Aid approaches their needs in a holistic manner. Where the program attorney did not have the expertise in a certain substantive area, the attorney could draw upon the rest of the resources of the Legal Aid office.
Alexis has now been living with Johnson for over a year. Alexis is a happy, healthy 6-year-old child, who likes coloring and playing house and constantly asks her father, “Why?” Johnson’s outgoing voicemail message reminds his callers that “failure is not an option,” and he approaches every aspect of his life with that philosophy. Johnson is enrolled in college (a straight-A student), off parole (he reports that this is the first time he has had no involvement with the criminal justice system since he was 11), and engaged to be married. He has found a way to give back and, through a local nonprofit organization, is organizing a play for a group of young adults with disabilities.
Johnson recently received a job offer to work with a construction company and learn a trade. This stability could not have occurred if he was left to manage his and Alexis’ various legal problems on his own. Because of Legal Aid’s intervention, the Johnson family’s health and life are stabilized. This low-income family is gaining economic security to help lift itself out of poverty. When asked about the impact of the Community Advocacy Program on his and Alexis’ life, Johnson said, “I can’t be any more grateful that this service existed to help me when I was ready to help myself. My gratitude I have for Legal Aid is unconditional because they helped me get my life on track” (telephone interview (July 1, 2015)).