Today I received another email asking me to contact the governor to request that no cuts be made to services for individuals with disabilities. I called the governor, and I have done it over and over these past months. The newspapers have printed the numbers over and over. Illinois rests one step up from the bottom — out of all of the states — in its services to adults with disabilities.
I am the parent of two adult sons with severe autism and mental retardation. We are blessed that my sons are a part of an excellent day program — Oak Leyden. There they are part of a community outside of our family that fills their days. We are grateful for this program. It allows my husband and me to go to work, and keeps away the specter of me as the old lady who spends her days walking my sons back and forth on Roosevelt Road for the want of any constructive activity. So, I repeat that I am grateful from the bottom of my soul for the day program. Not only does it serve a purpose, it is staffed by kind, caring, educated adults who understand why my sons do the things they do — at least as much as anyone can understand.
Now the state wants to cut services. What do you propose to cut from a day program? The state of Illinois has already made it clear that I will be caring for my sons until both my husband I are dead. Caring for our sons entails total physical care: showering, dressing, cleaning after toileting, locking refrigerator and cupboards to keep them from eating constantly, dispensing twice daily medications, being attacked physically for reasons that are never quite clear, changing wet bedding, and keeping our lives on a schedule filled with routines that are meant to soothe and control their behaviors. We care for them as we have cared for them since their births 25 and 28 years ago. I am even resigned to caring for them until I die, but don’t tell me that you are going to take away what precious little that we already have. Balancing the budget on the backs of those who can’t fight back is not something that I expect in a civilized society. What is the governor of Illinois thinking?