CW: Psychiatric Disabilities & Depression
Douglas Chafe is adored by his family, who strive to provide him with the best life possible. Douglas is 24 years old and severely autistic. According to his mother, Lorriane Morgan Chafe, he has not been enrolled in any programs for the last two years, having graduated from high school.
According to the ARC, more than 5,000 people in Massachusetts are not receiving all the required assistance. According to the state, over 70% of people who turned 22 in the last three years receive services.
Anne Kaufman, whose daughter Maya is 22, has faced similar challenges. Maya has schizoaffective disorder. Schizoaffective disorder (SAD) is a persistent, debilitating disorder. SAD is frequently used for those with a mix of mood and psychotic symptoms and whose diagnosis is unknown. It is distinguished by 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 challenging. 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.
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.
Donnie Duggan of Haverhill, MA, used to attend a day program. The program reopened following a closure caused by the COVID-19 pandemic, but Duggan has been unable to return. The program lacks the necessary staff to support him.
In 2001, Duggan was in a terrible car accident that left him paralyzed on his left side. Due to his disabilities, and size, Duggan frequently requires at least two people to help transfer him. Dugan also needs assistance with activities of daily living.
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 My IEP was no longer valid.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 increased my spasticity.
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 June 2023, and I am still unemployed.
Every year, millions of disabled people leave public schools. They are often left with very little support. Disabled people nationwide need access to home and community-based services. Unfortunately, low pay keeps many people from taking these jobs, which means disabled people are often stuck at home.
Sources:
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.
Fiandaca, Cheryl. “‘Systemic Failure’: Families Say There Aren’t Enough Programs for Young Adults with Autism.” CBS News, 7 June 2023, http://www.cbsnews.com/boston/news/iteam-young-adults-autism-developmental-disabilities-services-massachusetts/.
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.
LeMoult, Craig. “Thousands of Adults with Intellectual and Developmental Disabilities Have Lost Access to Day Programs in Mass..” WGBH, WGBH Educational Foundation, 27 Apr. 2023, https://www.wgbh.org/news/local-news/2023/04/27/thousands-of-adults-with-intellectual-and-developmental-disabilities-have-lost-access-to-day-programs-in-mass.