Shirley’s letter was published in the Sunday Chicago Tribune.
“Suffering in Secret” by Michael J. Berens and Patricia Callahan overwhelmed me at first, like a nightmare that won’t let you go. As the mother of Tamekia, a young woman with disabilities who utilizes community services, I found that the article encapsulated all of my worst fears for her. In spite of her challenges, including autism, developmental disabilities and a seizure disorder, she lives at home, participates in community life, and attends a day program where she gets individualized activities. Still, I worry every day because one of her challenges is that she doesn’t communicate traditionally, and you have to know her to understand her. I am always afraid that this will put her in a risky situation.
As an advocate for adults with disabilities and their families, I have heard many other parents and family members express the same fears. We want our loved ones to have safe, happy and fulfilling lives. We are willing to make many sacrifices to ensure this. We deeply fear that not enough people outside of our community understand the issues at stake or realize the dangers of allowing the state’s financial crisis to continue indefinitely. Providers need adequate funding to pay qualified staff a livable wage.
Thank you for printing this article and letting the citizens of Illinois know the dangers we are facing. I view this as an opportunity to gain supports and funding that can only better community services for people with disabilities. Acknowledging our fears can help us to see a way past them. We cannot afford to lose one more son or daughter.
— Shirley A. Perez, executive director, Family Support Network
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423