Residential Services: Presented by Jackie Ceonzo, Parent
March 13, 2015
My son Joey is 20 years old. He’s the most lovable, kindest person that I’ve ever met. He’s very handsome and he’s a very social guy. Unfortunately, things haven’t been so easy for him. In addition to his autism, he has complicated medical issues.
For about seven years, from the time he was about 14 months, Joey had literally hundreds of seizures a day. They were terrible. We went all over trying to figure out where they came from, and we never found anything. Luckily, the seizures finally stopped when he was eight, around the time my father passed away. We often say that my father took the seizures with him because there really was no medical explanation.
When Joey was 14 he began getting very aggressive and self-injurious. He would bite himself, and he was really hurting himself and us, and other people as well. He’s big, about 6 feet tall and 250 pounds. He would come charging at you to hug you, but he was so strong he would hurt you and then he would bite you on the head. We put him on medications to calm him down. We tried a lot of behavioral and other interventions, too. Now he still has difficult behaviors, but they are not as extreme.
Joey also has a bleeding disorder, a kind of borderline hemophilia, that we think was caused by some of his medications. He wakes up during the night because of severe bleeding from his nose, and then he vomits because he is so sick from the bleeding.
Joey doesn’t have a sense of danger. He loves to cook and to eat but he would think nothing of putting his hand into the frying pan to take out a slice of bacon. He’ll eat all the toothpaste, he’s been known to take a bite out of the soap, and take a swig out of the Windex. He still wets the bed at night, and I have to shave and shower him every morning.
I am 50 years old in human years, but in special needs care years, sometimes I feel much older. Luckily, I am still married but it’s been a rough road since Joey was born.
The future is scary. My husband, Joe, and I are going to get older. We’re going to die. We need a plan for Joey’s future. Because of his intense needs, I can’t imagine him living in any type of environment that’s not 24/7. He really needs arms-length supervision at all times for his safety. He has complicated medications that even I have a hard time with. I’ve learned that it’s almost impossible to get round-the-clock residential services. There are huge waiting lists. Adults in their 30s and 40s—even 50s and 60s—are waiting for residences. I understand that OPWDD’s priority is to bring kids back from residential schools, and that’s really important, but families like ours also need long-term options. So where does that leave us? No new residences are being constructed. If anything, what’s in place is being deconstructed. I’m really worried about what’s going to happen to my son and others with more challenging needs. When we’re gone, who’s going to shave him?
This year’s Executive Budget has practically nothing for residential services for families like ours. Our only hope is that the Legislature will stand up for us and our children and add more funding in the budget so that Joey and others like him can have a secure future.
Thank you.