February 13, 2009
A Love Story about Two Special Needs Consumers at Niagara Cerebral Palsy
My name is Tony Cecere and I would like to share my story and how the services provided by Niagara Cerebral Palsy have changed my life and that of my family’s forever. I am developmentally disabled.
In the early part of the 1980’s I met a wonderful woman, Patty. In 1983 we were given news that would change our lives forever. We were expecting our first child. I went through the same emotions as anyone who has just been told they were going to be a father when life took another drastic turn. Since my girlfriend was also disabled she was placed in a home where pregnant disabled individuals could go for the needed support. I felt very excluded during this process.
When my son was born I was unable to be at his birth. It was decided for me that the birthing process would be to difficult for us to handle. I regret that I was not there for his birth and I would have liked the opportunity to make up my own mind as to whether or not I could handle his birth. Following our sons birth, social services took custody of our child claiming that we were unfit parents because of our disabilities. My wife and I married one month following his birth. That is when Niagara Cerebral Palsy stepped in.
We were provided services (through the NCP Service Coordination Department) to educate us as parents. After a long custody battle we were able to regain custody of our son. We continued to receive services to assist us with budgeting, parenting and daily living skills. My wife and I began working through the collocated work program; another Medicaid funded program. This program gives us both a sense of value and accomplishment in our lives while earning a paycheck to fulfill our needs and desires. This agency has provided us a means to live a productive life and continues to provide the support needed to maintain our lives. Over the years my wife has succumbed to many health issues and has developed dementia. The agency has increased services to allow us to remain together for which we are very grateful.
On July 27th, Patty and I renewed our vows in front of friends and family. It was in celebration of our 25th wedding anniversary. Our success at life and family would not have been achievable without the hard work and dedication of the NCP agency and staff.
-Written by Tony Cecere
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Story: A letter of thanks sent to NCP CEO Joseph Mineo from mother of Autistic child, Noah Borzynski
Dear Mr. Mineo,
I would like to thank you and your staff for all that Niagara Cerebral Palsy (NCP) has done for my family. When I first registered for Medicaid Service Coordination I thought I was just preparing for Noah’s future. I soon realized I was receiving much more.
As the parent of an autistic child, there are times when you are not sure where to turn. I soon found out that Noah’s service coordinator could point me in the right direction. Noah started service coordination in 2004. NCP Service Coordinator, Carol Gee made the mess of paperwork to enroll him seem very easy. When I returned to work full-time, another Coordinator, Nancy Secic helped me find your Children’s Respite Program which offered after-school care in a safe environment and when he was too old for that program, another Coordinator, Loretta Godfrey helped me locate a babysitter in the community. I have to tell you that there are not a lot of after-school care providers willing to take on an autistic child with the habit of wandering away from the group. Through it all, they were there at every IEP (Individual
Educational Plan) meeting to make sure that Noah was getting the appropriate services and placement at school and have helped me find recreational programs which Noah enjoys that cater to his disability.
In your Children’s Respite program, I found a safe environment for Noah where I knew he was well cared for and which reinforced training we were doing at home. When I was working on toilet training with Noah, I only had to let them know what we were doing at home and they would do the same things after school. The program was not one where you left the child there and they played on their own. They did crafts with Noah, reinforced proper eating at snack time and played with him in a manner where he probably didn’t even realize that he was learning. After Noah became too old for Children’s Respite we were introduced to your Adolescent Respite Program. Although it only meets one night a week, Respite employees Bill, Megan and Elaine take him and other children like Noah out into the community and do things with him that we are sometimes unable to do. At dinner they reinforce proper habits for eating at a restaurant and do fun things like bowling or going to a movie that any normally developing child might do. They work towards giving him a normal life, one in which he is no different from any other child.
It may seem as if everything is geared towards Noah, but NCP has also helped my family. Because of Adolescent Respite we are able to focus attention to our other son Dylan at least one night a week reminding him that life does not revolve around Noah’s disability. I have attended your parent support meetings where I have learned from other parents and your staff what to expect or what to in the future when Noah grows up. It has given me a forum to find out what recreational programs are in the community and answer some of the questions I didn’t even realize I had. I have also attended workshops and NCP on Guardianship and Special Needs Trusts so that I may better plan for Noah’s future.
I would like to thank you for everything NCP has done for our family and hope that in these uncertain times, the programs that you offer will always be there. NCP has done a lot for Noah but most of all, it made me realize that my family is not alone in trying to do what is best for Noah; that we will always have the support from your staff, guiding us to answers we may seek.
Sincerely,
Marlies Borzynski
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A Story about Jackie McGrath
Jackie is a 46 year old developmentally disabled woman who has been cared for by her parents all of her life. Her mother passed away in January 2009 and her father, at 81 years of age, has limited ability to assist her. Her siblings have always known that they would need to step up and look out for her, but they are employed full-time and have families of their own now so they depend on NCP for day programming for her.
By some standards, Jackie has had several advantages as she has grown up. Her mother was a pioneer in the 1960’s in fighting for Social Security Disability benefits for the developmentally disabled as well as State funding for special education that allowed her to attend a private school for special needs children. Jackie learned basics of reading and writing as well as daily living skills, but remains at about a ten to twelve-year old developmental level.
There is evidence of mental health issues that need to be managed medically. She is unable to drive or work outside of a sheltered workshop setting. She depends on her day programming for transportation and meaningful work. She looks forward to working with vocational staff as they keep her reading and computer skills up. The weekend structured recreation program allows her to have a safe setting for outings and socialization that is difficult for individuals like her.
