Free Danny from the System

Danny comes into my office fairly frequently, usually with his father and one or more aides from the group “home” where he lives. He looks like a junior varsity football player with his padded shoulders, padded chest, his helmet and the multiple bruises he wears on his face, neck, arms and legs. A constant motion machine, his presence does not go unnoticed by the other families or the staff.

Like many children with Autism, Danny has a number of ear, nose and throat problems. Eating preferences, self-abusive behavior resulting in trauma to the head, face and neck, and chronic ear disease all require precise diagnosis and targeted treatment, just as in any child. But in this now-a-teenage boy, with no speech or other communication skills, serious behavioral issues, and the inability to sit for examination, the challenges of keeping him healthy are all the more difficult.

Today he came in for ear drainage, now smelling badly and possibly making his behavior even worse. Two very large aides (each one well over 6 feet and nearly 300 lbs with muscles I have no doubt could pump some serious iron) had difficulty keeping him still enough for me to examine the ear. But finally we managed and Danny went home with a plan and his aides. His ever smiling and pleasant father asked if he could speak to me about his frustrations with Danny and “the system.”

I really like Danny’s parents. I am actually in awe of them. They are always cheerful and positive. I don’t know how they do it. And even though it was 1 ½ hours after we usually finish, I sat back and heard a story I knew he needed to tell.

I think I have told you that we have been trying to get Danny home. I cannot tell you how frustrating it is. We have asked for 90 hours a week of services so he can live at home, and we are told that it is too much.

Right now Danny lives in a facility where he gets 24/7 services plus his room and board. This costs the taxpayers more than $250,000/year for this arrangement. If they give us the 90 hours we think Danny needs, it will cost only $165,000/year.

We go from meeting to meeting and have administrators who know nothing about Danny tell us that it cannot be done.

I asked him how he keeps his good humor and smile on his face.

Well, first I try to kill them with kindness, but when that doesn’t work, I really get tough.

I had never seen him “tough” because with each visit, practically wrestling with his son who is getting taller and bigger by the day, he always keeps his voice calm and his demeanor positive. I told him I didn’t know how he and his wife do it.

It’s just the way life is.

We want Danny home and we can’t get him home. Once he is in the system, it’s nearly impossible, but we are not going to give up.

I heard a plea and I thought a hint of despair. I told him if they needed any help, to let us know. So, if any of our elected officials read this story, could you please free this child held captive in a system that thwarts a parent’s wishes and costs taxpayers more money? No, I couldn’t make up this kind of sorry story even if I tried.