ABOUT THE PROJECT
Living in the Gray Area on the New York Developmental Disability Spectrum
While New Yorkers with developmental disabilities transition into young adulthood, they have the ability to register with a government organization called The Office for People with Developmental Disabilities (OPWDD). It is the umbrella organization that is in charge of funding services for over 130,000 people across the state.
Yet, some New Yorkers with developmental disabilities are not eligible for these services due to intellectual cut offs, like the Adaptive Behavior Assessment System test (ABAS-3), which is an IQ scale that assesses daily living skills of individuals with developmental disabilities.
When an IQ level of 70 is the cutoff for benefits, people with slightly higher cognitive functioning lose out on services, leaving families to create a plan for their child to succeed independently. People who score above a 70 on the IQ test, like James Maciaszek from Setauket, do not qualify for state benefits.
These members of society fall between the cracks. Their families are left to figure out living accommodations and a way for their young adult children to succeed in the world, both independently and financially.
This story breaks down the complicated system of “aging out” of the federal Individuals With Disabilities Education Act (IDEA) at 21 and will follow James and his mother, Christine, as they navigate the services and benefits system.
HOW IT GOT STARTED
This project is dedicated to my brother Kevin.
For my senior year reporting class in The School of Journalism at Stony Brook University I wanted to write about a topic close to home. I decided to delve into the world of developmental disabilities and research all the aspects of government benefits that are meant to assist this community.
Living in the Grey Area was a topic I chose to cover after years of watching my mother fight for my younger brother. Kevin was born with Down syndrome and Autism Spectrum Disorder in 1999. He has the functioning level of a 2-year-old and is wheelchair-bound due to never recovering from a hip surgery. It has been a long journey to set him up with benefits to support him at the level he needs and deserves. He has lived in an OPWDD group home on Long Island due to his inability to walk for the last three years.
The journey of navigating the system has been a long haul for my family and is a burden that plagues all families with children with developmental disabilities. While children can receive OPWDD benefits as young as three-years-old, no one ever told my mother about the program.
She only discovered this benefit program through a friend when Kevin was around the age of 16. That means that for 16 years, my family paid out of pocket for benefits that are usually provided through the government. Many families are unaware of all the benefits out there and the purpose of this piece is to shed light on how difficult and lengthy and often-time confusing the process can be.
I met James and Christine at a pool party in the summer of 2019. It was for a young adult with Autism Spectrum Disorder that I care for as a Community Habilitation Service Provider for AIM Services Inc., a nonprofit organization funded by the OPWDD.
I want this piece to both educate and address how complicated the system is. Families with children with disabilities already have enough on their plate. The system needs to better help these families in finding life-long support for their children. Too many fall between the cracks, like James, especially those in the gray area on the developmental disability spectrum.
ABOUT ME
KATHERINE HOEY
The School of Journalism at Stony Brook University
My name is Katherine, but I prefer to go by Kat. I’m a Long Island native about to graduate with a B.A in The School of Journalism at Stony Brook University. My main focuses in reporting are culture, the environment and social issues. I’ve always felt a drive to try to change the world and what better way to be a part of the conversation of our time than through journalism.
Check out more of my work at katherinehoey.com