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Max Donatelli: People with disabilities thrive with support

Our son, Craig, was born in Children’s Hospital on May 10, 1988. My wife, Joyce, and I were informed by Dr. Luther Robinson, geneticist, that Craig had Down syndrome. The doctor said that while Craig had a developmental disability, it was mild; he would always learn, though it might take him a little longer. Importantly, he was healthy, since at least 50 percent of babies born with Down syndrome have significant health issues.

While we were initially overwhelmed with grief because of our own prejudices of what having intellectual disabilities would mean, our 8-year-old daughter, Connie, was undeterred and proclaimed that “at least he is ours, and we can take him home.” She just saw her baby brother.

This was the start of an incredible journey of learning about Down syndrome and what Craig’s potential could be. Early on, we learned from his teacher in early intervention at Heritage just how important inclusion was for his development. From these in-home supports at 9 weeks of age, we learned how valuable it would be for Craig to socialize and be educated with his same-aged peers.

We then began a quest to become expert with his inclusion, seeing that he could reach his full potential. With support from family, friends and professionals, we forged a path for Craig in schools – both in Buffalo and Frontier – to see that Craig could be educated with his peers, with the support he needed to accommodate for his learning challenges.

While we faced significant obstacles, we helped others to believe in Craig’s potential and saw him blossom. His inclusion has afforded Craig to have a positive self-image and to be very social.

With support, he has begun a successful career at Denny’s, working as a busboy. In addition, with person-centered planning, Craig has been able to realize his dream to live with his “honorary brother” David, a dear friend of similar age and disability. With help from other loving families and professionals from Aspire of WNY, Craig and David, and other friends, are in a shared-living situation. After two years, Craig has a satisfying living situation with friends and is getting support from a life coach and facilitators of life choices from Aspire.

Craig has been at Denny’s for four years now. His recreation includes playing drums, going to the gym, SABAH, Touching Bases, et al. He learns at People Inc.’s CAP Program and Self-Advocates of WNY. We couldn’t be prouder of how well Craig has done. We are so thankful. He is social, happy, positive, a hard worker and a peacemaker. Joyce and I are cheerleaders for inclusion and hope that others are given the same opportunities as our son.

However, we have serious concerns with the state’s move toward “managed care.” Too many families can’t plan for their loved one’s future. Individuals with developmental disabilities have a wide range of needs and many require life-sustaining support in order to live successfully. Without this support, they would be in life-threatening situations.

We want Gov. Andrew Cuomo to assure that housing, meaningful day programs, pre-employment and competitive wages for direct service professionals are included in the budget so families can plan and access what their loved one needs. These citizens deserve a high-quality life, so their parents can sleep at night.