The following is a letter submitted by the ARC of Livingston-Wyoming to the Editor of the GeneseeSun.com for publication.
To the Editor:
For as long as I can remember, my passion has been to build better lives for individuals with developmental disabilities and their families, both as a Special Education Teacher and as a loving Mom to a remarkable young man who was born with disabilities.
For more than 30 years as an advocate and volunteer, I have watched and helped New York State move forward with the proper supports and opportunities that fit the needs of men and women with disabilities at work and in their homes.
Shockingly, it seems to me that our state is moving backwards, and is now in danger of undoing decades of hard work and progress for New Yorkers with disabilities. While our local representatives have been supportive, Gov. Cuomo is turning his back on our most vulnerable citizens. Examples include a plan to close all sheltered work centers within 6 years, and a decree that actually prohibits new workshop employment right now. On the residential front, he has vetoed four bills that would have begun to address an expanding list of individuals who await housing because their family members are growing too old to effectively care for them.
My husband Fred and I have raised two sons in a very rural corner of the town of Springwater in Livingston County. Shortly after the birth of our youngest son Matt in 1976, it was apparent that he had disabilities. As a Special Education Teacher, I knew early on that he was not reaching usual childhood developmental milestones, like holding his head up and sitting independently.
In those earliest moments, my life changed. In Matt’s youngest years, I began a quest to find lifelong programs that would meet all of our needs, starting with The Arc of Livingston-Wyoming’s preschool program, and then transitioning into public school.
Children grow up fast, and before we knew it, Matt was graduating high school. As graduation approached, we implemented plans for employment and residential housing that had long been in the works for Matt. He would get a job at the Hilltop Industries sheltered work center, which is another program of The Arc. There, he would be paid a fair rate by the piece for contract assembly work. And he would have the much valued opportunity to socialize with peers who were experiencing many of the same joys and challenges of life.
Housing for Matt was trickier. The Residential program had to be 24/7 awake due to his seizures and an eating disorder. From the age of 12, we refined this plan annually, working toward the four-bed IRA (Individual Residential Alternative) in Dansville where Matt lives to this day with some of his closest friends in the world.
Our family was relieved that we had a good working plan and that Matt would be safe, healthy and happy for the rest of his life.
Fast forward to the present time; I am a Special Education Teacher with Genesee Valley Educational Partnership (BOCES), and have been teaching Transition and Life Skills to students aged 16-19 who have disabilities like my son.
For over 30 years, I have bragged to their families about the great services that are available to them in New York. Now, I have to tell those same mothers and fathers that the State is taking away many of the choices I have been talking about for the past three decades.
The lack of choices and opportunities has had drastic effects on those families. It is like flying into a storm where you cannot see where you are going or how long will it take to reach the sunshine.
We have learned through the years what works in New York State – and that families with choices make the best ones for their family. We’ve also learned that it is best to keep multiple employment options available, to provide meaningful work for folks who want to come to a job every day, and get regular paychecks for their hard work.
How do I tell an elderly Mother that her “job” 24/7 is to take care of her adult son/daughter forever, that services are changing – and not for the better?
Shame on Gov. Cuomo for telling us that families should be lifetime caregivers, and that someone outside the family is going to make decisions about our sons’ and daughters’ futures. This policy is not acceptable; it is wrong! It puts a great burden on families while attempting to silence us.
Try as he might, there is no taking away our voice. Right now, hundreds of us across the state are writing letters and making phone calls to our elected representatives. We are organizing and expanding activism efforts, such as The Arc’s Family Advocacy Group (www.lwarc.org) – all in the name of better lives for individuals with disabilities and their families. It’s time to get this great state back on track!
Volunteer Board Member
The Arc of Livingston-Wyoming
PHOTO CAPTION: Top – Englert’s son, Matt. Bottom – Cheryl Englert. (Photos/ARC Livingston-Wyoming)