New York has been severely impacted by the COVID-19 global pandemic. While so many New Yorkers have suffered, it is important to highlight the needs of those most vulnerable in the city, including people with disabilities.
Individuals with intellectual/developmental disabilities have seen more budget cuts in services through the New York State Office for People With Developmental Disabilities, OPWDD. I have a sibling who is academically smart but struggles with everything else, even with basic tasks, and I’m not always there to help him. My family and I had plans to get services through OPWDD, but COVID has turned our initial plans upside down. It has been over a year and a half since we began the process to prove eligibility and attain proper services, yet we continue to wait. Legislators don’t seem to understand the impact these cuts make and the barriers they create for family members to access existing services. It is a long process to become eligible through OPWDD, let alone getting services, especially during the pandemic. Cutting down funds for vulnerable individuals who struggle to advocate for themselves is unethical and we all need to speak up.
When families discover their child has a disability, they worry about their child’s progress and future. It isn’t easy to know where to start when you don’t have someone to guide you. At times, it can be an emotionally challenging journey. The professionals who are supposed to help you, don’t. The unknown can be frightening to many, and when their child turns 18 years old and is considered an adult, the family has to file for guardianship or navigate the system with little aid while dealing with many obstacles. Their child may also be graduating from high school, and as a result, they lose the Department of Education’s services. Many families find it surreal when their child reaches such a milestone and graduates from high school, seeing them graduating should be a source of pride, not the stress that being 18 and out of high school invokes to guardians of children with disabilities.
I was fortunate to see my sibling receive two awards at his ceremony and for once, see him happy. My sibling wound up graduating with a Career Development and Occupational Studies diploma, typically known as an IEP diploma. He wasn’t given a chance to take the regents, and navigating help from the Individualized Education Program (IEP) team wasn’t always helpful, nor were we taken seriously. My sibling’s school experience continues to affect him negatively. However, he was able to obtain a GED diploma and enroll in college. He is lucky to have an advocate from the start who believed in him, but it is challenging to get the help he needs. I would act as the advocate and translator for our mother; however, we wouldn’t be taken seriously at his IEP meetings despite her being present.
OPWDD has not helped us, but instead has created more hurdles since we’re forced to provide mountains of paperwork. We weren’t even given the option to get services virtually. This is unacceptable and needs to be addressed since individuals with disabilities require additional support, especially during a pandemic.
Many individuals aren’t aware of their disability until a later time in life, and despite some being diagnosed as children, they don’t get the adequate services they require. My brother was never provided with applied behavioral analysis (ABA) therapy, and as for occupational therapy, it was removed from his IEP despite having penmanship issues that weren’t resolved. Due to my brother not receiving the adequate services he needed, we looked into OPWDD hoping to get help. Unfortunately, that hasn’t been the case and it has been a waste of time emotionally and physically for all of us. During and after the shutdown, while taking virtual classes, my brother’s behavior reminded me how he depends a lot on someone just being there for his mental health and also providing home care. We didn’t receive assistance from OPWDD during his meltdowns, just disappointments.
State legislatures need to help New York’s most vulnerable community during the pandemic in getting their services. New Yorkers with disabilities need to be given every chance to succeed, not brushed off to the side. The COVID-19 pandemic has clearly heightened a crisis amongst individuals with anxiety and other emotional challenges, which should be taken seriously and provided with urgent assistance from the state. It is time for New York to invest in the communities in drastic need, no more budget cuts to disability services.
Anonymous, yet concerned New Yorker