For Steven — A Plea for Equity in the World of Developmental Disabilities
Open day programs for adults with developmental disabilities in New Jersey now
Individuals who are developmentally disabled (DD) are not adults until they are over the age of 21 within the state of New Jersey. Our New Jersey DD adults are not being allowed access to their day programs due to the Covid-19 Activity Level Index (CALI). There is no other group of individuals in New Jersey that are being denied the option to their livelihood at this point in the Covid-19 pandemic.
Steven Kowitski, my third-cousin and one of my favorite people on the planet, was diagnosed with Autism in 1992 when we were both 2 years old. This past fall, he called to tell me that he was finally back at “work,” what he calls his adult day program. I later found out it was only part-time, with all Covid-19 protocols in place including 3-feet of space, for 8 weeks from September 24th to November 23rd. During the second week in November, the majority of the state was considered Orange — HIGH according to the CALI. At this point, the CALI was only strongly recommended to open anything, including businesses, public and private schools, places of worship during the Covid-19 pandemic within New Jersey. Using the CALI as guidelines and with the appropriate capacity restrictions, health and safety protocols — all these spaces were open. Then on the Monday before Thanksgiving 2020, parents and legal guardians of the Developmental Disability Adult Programs received emails from their adult child’s day program that stated the following, “It is with great sadness that I have to pass along the following information from a DDD (Division of Developmental Disabilities) communication received one hour ago. All Division-funded in-person congregate day service facilities are directed to close again effective close of business November 25, 2020 through at least January 19, 2021.” Read more in a recent email sent out by the DDD here. It’s now April 6th, 2021.
As public and private school educators, my husband and I knew that this was the statement being made to all state funded programs, and we knew about the color system within the CALI. However, come January, public schools reopened for in-person learning even at a high level. Day programs and schools for what New Jersey considered children with DD were given the option to reopen as well and they did. Here is where the discrimination is occuring, the adult day programs for developmental disibilities are the sole demographic who are being denied access to their programs due to the CALI Report.
We do know that there is a “division budget of over $1.8 billion (state and federal funds) within the DDD.” Where is Steven’s money going? To a Zoom membership?
Upon accepting the invite to the private Facebook Group from my cousin, Pam DeSciscio-Kowitski, Planning Protest in NJ — Open Day Programs for Adults, I quickly scrolled through realizing that group founder’s Claire Derosa and Marianne Nugent Reagan have worked tirelessly to build a community of parents to support and advocate for their children. I listened to their stories. “I am writing to you on behalf of my son Ross. Ross lives in Princeton Junction in an Eden Autism residence. We have all had to make adjustments, but being autistic he really doesn’t understand why. Before COVID-19 he [led] a very full life, i.e.: day program, job, family and community integration. So now a year later it’s like he is in jail…” Sincerely, Linda M. Adler, Monroe Township, NJ.
It was a week later on Monday April 5th, I called Pam who I call my surrogate Aunt, Mom, and Sister and asked, “How can I help?” She shared that it felt like “nobody is listening, we need help being heard.” I’m on it, a petition was started via Change.Org that same hour.
Later that day, Jersey1st had invited members of the FaceBook group to “sit down” with Senator Kristin Corrado of New Jersey’s 40th Legislative District. I was honored to join in. In a previous statement Senator Corrado said, “The reopening guidelines for adult day care programs are not only bizarre, but they do not even coincide with the school reopening guidelines…” This is exactly the validation that these parents needed to hear. As I continued to listen to more stories of the detrimental effects this is having on DD adults, I began to understand that this is an act of discrimination that needs to be held accountable. As Pam’s anger has continued to grow so has her evidence, “Steven is part of the “Protected Class” which is a Federal Law, The developmentally disabled are one of the protected classes that cannot be discriminated against.”
The lack of response by the majority of our state’s leaders is appalling. My question to our state’s decision makers, is this the legacy you want to leave?
“Dear Governor Murphy, Our population matters! Open our day programs, do not hold us to the CALI Report. I have civil rights and day programs are the only place that must follow CALI. This is not fair. Thank you for reading my letter. Signed, Daniel Osborne’’ Oh, my heart. Thank you, Daniel. “[Almost everyday] he writes a letter to Murphy, he addresses it, stamps it, we drive to the post office and he mails it. I’m sure he doesn’t even see it but [it] helps Daniel feel like he’s doing something,” Jola Osborne, Daniel’s Mother. There has been no response from Governor Murphy or his office to our families of the adult DD community.
You could say I’m delusional or way too optimistic but it should be our goal of humanity to want to be measured by how we treat each other. When we lift up one another, we in return are lifted up by individuals we did not think we could learn from. This is for you Steven, I adore you, I see you, I hear you. I’ll do more, I’ll do better for you.
Please sign our petition on Change.org and share this story widely. Join the community of individuals who want to treat all humans with dignity and equity. Ask Governor Phil Murphy to make a public statement of accountability and an apology to our adults with disabilities. I’m calling on all New Jerseyans to advocate for a better home for all individuals — not just those of us who are typically-abled.
Sign the petition at Change.org & Share it! https://www.change.org/p/governor-phil-murphy-open-day-programs-for-adults-with-disabilities-in-new-jersey
Send the DDD this message: Reopen Developmental Disability Day Programs for ages 21 and older now!: https://nj.gov/governor/contact/all/
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Edited by: Friend, world-changer, and brilliant Journalist, Colleen Hagerty and Friend, champion, and fierce Photo-Journalist, Meghan Dhaliwal
About Me: I define myself as a passionate learner, I want to see a world where we see and hear everyone equitably, hoping to leave a legacy beyond my own needs and wants. I was born and raised in New Jersey, hailing from Fort Lee, raised in Fanwood, now living in Scotch Plains. My education, professional life, and personal story are one in the same, I will not compartmentalize who I am. I studied History (mainly American) and Education at Union County College and Montclair State University. I have experience working alongside children and adults with exceptionalities (developmental and physical disabilities/special needs), their parents, and fundraising, educational support, communicating, working within non-profit organizations. Together my husband, Ryan and I have two young daughters under the age of three. Ryan is my partner, he cares deeply about learning and his middle school students’ mental health, as their science teacher.
