Niagara Gazette

February 23, 2013

GUEST VIEW: New era, same commitment to developmentally disabled

By John J.M. Reardon
Niagara Gazette

Niagara Gazette — As I assume the mantle of leadership at Niagara Cerebral Palsy, I am humbled to have the unwavering support of our board of directors, including our new president Dr. Salvatore Passanese from Niagara County Community College. The members of our board sacrifice their time and are 100 percent committed to serving some of our most vulnerable citizens in our community — the developmentally disabled.

I also would be remiss if I did not acknowledge the dedication and commitment of our tremendous staff that provide the developmentally disabled with such compassionate care. It takes special people to provide such care and our organization is fortunate to have so many who provide this care on a daily basis.

Rather than communicate anecdotally about the dedication and commitment of our board and staff, I would like to share a couple of real-life stories. Don Napoleon has served on our agency’s board for the past 22 years. His daughter, Becky, started in our pre-school special education program when she was 3 years old and through the years has received physical, occupational and speech therapy. Becky is 31 years old today and according to her father has maintained the same infectious smile since she arrived at our agency all those years ago.

As Don will tell you, Becky is simply trapped inside a body that doesn’t work. She cannot speak and goes about her day in a powered wheel chair. She brings home a paycheck through a work program at our Community Vocational Rehabilitation Center. The paycheck Becky earns every two weeks from the center fills her with great pride because she loves to work.

Don Napoleon serves on our board because he is his daughter’s voice; as Don has conveyed to his fellow board members and others in our community throughout his years of service, it’s easy to sweep the developmentally disabled under the proverbial rug, especially when it comes to the legislative process. The fact is, programs and services for the developmentally disabled are in jeopardy every budget cycle. Our board can never rest or be content because of this threat.

Helen White’s son, Darrell, has been in our residential services program since he was 14 years old; Darrell is now 32 years old and currently lives at our Ward Road residential home. The residents at Ward Road have typically been a younger group and like Darrell, are in their 20s and 30s.

Staff is always there to support the residents in their daily endeavors, as well as therapists to assist individuals in realizing their potentials to the fullest extent possible. The facility provides a large backyard for picnics, playing ball, or just getting outside for some fresh air. A walking path has provided countless opportunities for exercise and solitude over the years.

Helen and her husband are a bit older parents so Ward Road not only provides them respite, but also more importantly provides Darrell a home where is he loved by the staff that takes care of him on a daily basis. This does not mean that Darrell does not see his parents regularly. To the contrary, Darrell stays with his parents every other weekend and as Helen will tell you, it takes that time in between to get rested for Darrell’s next visit!

Weekends with Darrell are spent driving throughout the Niagara region with Helen and her husband, sometimes putting over 500 miles on their car! And, if it’s Sunday during football season Helen knows where to find Darrell – in front of the television cheering on the Bills. After a couple of days with mom and dad though, Darrell is ready to go home to Ward Road.

Here is what Helen has to say about the Ward Road home: “When you have to give up a child to something like this, it’s wonderful to know you made the right decision and you chose the right place because that above anything else is the most important thing we ever could have done for our son.” Helen also will tell you that she serves on our board because she wants to know what we are doing every minute to make sure that the care we are providing Darrell and all of our residents keeps them happy, safe, feeling special and most importantly loved.

I could go on and on and tell many other similar stories not only about our board members but the experiences of our staff that provide this care. I hope the stories of Becky Napoleon and Darrell White gives some sense as to how special and unique those with developmentally disabilities are and how important it is that they are taken care of in a loving and compassionate way.

It is by no means an easy job, but our organization provides a voice to the voiceless and supports to the people who need it most. We will remain resolute as an agency in our commitment to the developmentally disabled in Niagara County.

John Reardon is the executive director and CEO of Niagara Cerebral Palsy in Niagara Falls