CW: Institutionalization:
Zainab Edwards, 23, enjoys ice skating. She skated one day last year on a Thursday morning with an instructor’s help. Edwards has disabilities and health issues. She is deaf and has an ileostomy. For years, American Sign Language and cochlear implants allowed her to thrive. Eight years ago, however, everything changed. She had difficulty walking, seizures, and behavioral issues. After years without an answer, Edwards was diagnosed with autoimmune encephalitis.
Autoimmune encephalitis is an umbrella term for various inflammatory central nervous system illnesses associated with neuronal autoantibodies. Additionally, this includes other biomarkers of central nervous system autoimmunity. Common symptoms include increasing neurocognitive symptoms with concurrent movement disorders, seizures, and autonomic dysfunction that progresses over weeks to months. Treatment can consist of steroids, IVIG (a therapy made of antibodies given intravenously), and physical therapy.
Her mother, Cynthia Elliott, now 71, began looking for a permanent living situation because she was unable to keep her daughter safe at home and was anxious about what would happen when she and her husband died. She and her husband purchased a townhouse after extensive research. The townhouse was nearby and within walking distance of a park.
The goal was to have the young woman live with a roommate. The roommate would provide companionship and offset costs. The state of Arizona would provide home healthcare services and other assistance. However, behavioral issues meant that was no longer an option.
Some families are able to pay for services out of pocket, depending on an individual’s needs. However, in many cases, this is not possible, leaving family members to care for a loved one around the clock. About 7.4 million individuals with intellectual and developmental disabilities live in the U.S. Approximately 1 in 5 of them, according to a 2017 report from the U.S. Department of Health and Human Services, receive services from a state agency.
The majority of Americans with developmental and intellectual disabilities receive no assistance. Others are stuck on waiting lists for years or even decades. Some states, including Arizona, do not have a waiting list. The state is currently paying over a million dollars a year to provide care for Edwards.
Her family says that Edward’s quality of life is still dismal. Edwards had full-time caregivers and a behavioral coach during the day in the fall. Her mother says Edwards often falls asleep on the couch in the middle of the day.
Unfortunately, due to staff turnover, Elliott often cares for her daughter. At least 60 different staff members have taken jobs and then left in the past couple of years. In four years, the police were called to the group home 100 times. Following seizures, Edwards occasionally becomes aggressive and has broken her bedroom window.
Elliott installed five cameras in Edwards’ home after she had second-degree burns on her hands, and Elliott could not ascertain what happened. Fortunately, there haven’t been any other instances. The cameras, however, do show that Edwards is isolated. She often eats meals alone at the kitchen table, according to her mother.
This starkly contrasts with the group home where Elliott’s sister lived for nearly 20 years. While living there, Jeannie Elliott enjoyed being involved in the community. She loved trips to the nail salon, massage therapist, and bookstore. She moved there after living at Cambridge State Hospital in Minnesota since the age of five.
Jeannie Elliott never walked or talked and had difficulty swallowing due to craniosynostosis. Craniosynostosis is a developmental craniofacial defect resulting in impaired brain development and an irregularly shaped skull. The main cause of craniosynostosis is premature closure of one or more cranial sutures. The condition is frequently associated with a higher risk of delayed cognitive development, facial abnormalities, sensory, respiratory, and neurological dysfunction, eye anomalies, and psychological disorders.
Medicaid is an essential program for millions of disabled individuals, including me. Medicaid allows me to live in my own apartment. My PCAs are paid for by Medicaid. My PCA assists me with daily living activities. His support allows me to participate in my community.
For people like Zainab Edwards, Medicaid funding should allow her to be a part of her community. She shouldn’t be stuck at her group home isolated, and lonely. Disabled people deserve to live in their communities regardless of age or disability.
Sources:
Arumugham VB, Rayi A. Intravenous Immunoglobulin (IVIG) [Updated 2022 Jul 4]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2022 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK554446/
Abbatemarco, Justin R., et al. ‘Antibody-Mediated Autoimmune Encephalitis: A Practical Approach’. Cleveland Clinic Journal of Medicine, vol. 88, no. 8, Aug. 2021, p. 459, https://doi.org10.3949/ccjm.88a.20122.
Kajdic, Nina et al. “Craniosynostosis – Recognition, clinical characteristics, and treatment.” Bosnian journal of basic medical sciences vol. 18,2 110-116. 20 May. 2018, doi:10.17305/bjbms.2017.2083
Lancaster, Eric. ‘The Diagnosis and Treatment of Autoimmune Encephalitis’. Jcn, vol. 12, no. 1, Korean Neurological Association, Dec. 2015, pp. 1–13, https://doi.org10.3988/jcn.2016.12.1.1.
Silverman, Amy. “Million-Dollar Question: How to Find Safe Homes for Those with Complex Needs.” Center for Public Integrity, Center for Public Integrity, 19 Dec. 2022, https://publicintegrity.org/health/institution-of-one/find-safe-homes-people-with-disabilities/.