CW: Psychiatric Disabilities & Depression:
For parents like Anne Kaufman, the moments their children reach certain milestones are memorable. Maya Kaufman, her 22-year-old daughter, performed on stage in front of dozens of people just a few months ago.
Maya has schizoaffective disorder. Schizoaffective disorder (SAD) is a persistent, debilitating disorder. SAD is frequently used as a diagnosis for those who have a mix of mood and psychotic symptoms and whose diagnosis is unknown. It is distinguished by the presence of signs of a significant mood episode (either depressive or manic episode) alongside symptoms of schizophrenia, such as delusions, hallucinations, or incoherent speech.
For Maya, the condition causes her to have hallucinations and makes everyday activities tough. She needs full-time care to function in daily life. It took a lot of effort to build Maya’s confidence to the point where she could perform on stage. She attended the Ivy Street School in Brookline, MA for six years. As a student, the teachers helped her develop social skills and a passion for the arts.
Anne Kaufman is concerned about Maya’s future now that she is transitioning to adult services. She is concerned about seeing her daughter hit new milestones. There aren’t enough services available for disabled people who need them or potentially benefit from them. Many facilities are understaffed, making placements difficult to come by. Kaufman has had a hard time locating these services for Maya ever since she left school.
The Kaufmans aren’t alone. The transition to adulthood is difficult for many people with disabilities and their families. When I graduated from high school in 2018, I was anxious about my future. I felt lost after years of attending daycare, preschool, and public school. Suddenly, I had no idea what my life would be like. My IEP was no longer valid. This meant I was ineligible for physical therapy and other services, which meant that my spasticity increased. I had been accepted to Westfield State University, but I wasn’t prepared for the challenges I would face in the next couple years.
I had difficulty finding personal care assistants to accompany me to college. My PCAs would drive my wheelchair van to campus, and assist me with activities of daily living. They were often unreliable or had personal issues. My first PCA was late nearly every day. My mom and a friend often took me to college at the last minute.
It forced them to rearrange their schedules. I constantly felt like a burden to them. Receiving accommodations was challenging as well. I wasn’t used to having to request them weeks in advance.
At the end of my freshman year, I wanted to find a job for the summer. I wanted to add work experience to my résumé. I visited the career center on campus. I looked at numerous opportunities. I contacted a local publishing business. Unfortunately, the location wasn’t accessible. Later that year, I started to look for a job again. It is December 2022, and I am still unemployed.
Too often, employers don’t hire me once they find out about my disability. I even tried working with my local vocational rehabilitation office. Staff turnover was unfortunately very high. I went through three different VR counselors before giving up. They often didn’t respond to e-mails or phone calls.
By 2019, I was experiencing severe depression and anxiety. This made it difficult to get through the day. Nearly every day I was sad, and frustrated. At times, it felt like I couldn’t control my emotions. It was an extremely challenging time for me.
The beginning of the COVID-19 pandemic affected my education. This was the case for millions of students around the world. I had difficulty concentrating while learning remotely. Receiving accommodations remotely was also a challenge. I missed being on campus and felt isolated. The pandemic caused my mental health to decline even more By January 2020, I was on antidepressants. Nearly three years later my mental health has improved albeit slowly.
I also began thinking about moving out of my parent’s house. Finding accessible housing is challenging. Nationwide, only 6% of homes in the U.S are accessible. However, 15% of households include a member with a physical disability. I ended up moving out in 2020. I enjoy having a greater sense of autonomy. Making my own decisions was nerve-racking at first, but I eventually became used to living on my own with a friend who is my full-time PCA.
Every year, millions of disabled people leave public school. They are often left with very little support. Adulthood shouldn’t mean that we are forgotten. We deserve to live meaningful lives and to be treated with dignity and respect.
Amer, Yasmin. “Shortage of Care Workers Means Heartache, Stress for People with Disabilities and Their Families.” WBUR News, Boston University, 5 Dec. 2022, https://www.wbur.org/news/2022/12/05/care-work-disability-human-services.
Miller, Jacob N, and Donald W Black. “Schizoaffective disorder: A review.” Annals of clinical psychiatry : official journal of the American Academy of Clinical Psychiatrists vol. 31,1 (2019): 47-53.
Warnock, Rob. “How Accessible Is the Housing Market?” Apartment List , Apartment List, 19 February, 2020, http://www.apartmentlist.com/research/how-accessible-is-the-housing-market.