Here's something that might distract these advocates for awhile from undermining the infrastructure of services available to people with DD: Put your efforts into untangling the mess that is Medicaid customer service that causes despair and outrage in anyone trying to penetrate the Medicaid wall of inefficiency and ineptitude.
I've written about this before, but here we go again.
Here's the deal: Danny needs a replacement part on his wheelchair for the tilt mechanism to work. This is vital for repositioning, which he needs frequently for his care and comfort. The wheelchair repair service set the chair in one position to still make it usable. Then they sent in all the paper work for Medicaid to authorize the purchasing of the part. Medicaid has such a huge backlog, that wheelchair repair waited for four weeks for Medicaid to respond. When they called about the authorization for service a week ago, they discovered that Medicaid had no evidence that an authorization request had been sent to them. Wheelchair repair started the process all over, faxing in the paperwork. When I called this morning, the wheelchair service said I might have better luck as a parent finding out what has happened to the order for a replacement part.
I called the Medicaid help line [1-800-642-3195] to begin several rounds of responding to automated menu items and listening to messages about how they probably could not help me on this line. After something about cervical cancer and Medicaid hearings, a message played that said "Check your local phone book for dentists. We do not have lists of dentists who take Medicaid".
"Why not?", I said to no one in particular. Some of the messages were so well done that I believed I was finally talking to a human being only to find out that I was still on an automated call.
I finally did get through to someone named Dan. To be sure, I do not blame Dan for any of what ensued. He probably is just some guy who is waiting to find a real job and is doing the best he can in the meantime holding on to one of the worst jobs on earth: listening to people like me complain about Medicaid and reminding him that their inefficiencies hurt real people.
Dan quizzed me, first gathering information about me and then information about Danny, including his Medicaid number. I was not listed as Danny's guardian, although I sent in the paperwork for that years ago. Dan was therefore unable to impart any information of a confidential nature. But he did place me on hold for ten minutes, so that he could figure out who I could call, depending on Danny's Medicaid classification.
Dan will send me the form to fill in (again) so that I will be listed as Danny's guardian and will then be permitted to discuss his case more specifically on the phone. What I then learned is that even when I am listed as Danny's guardian, it won't make any difference: I will have to ask the provider of the service to find out about the status of the Medicaid authorization to replace the broken part. While Danny no longer has a workable tilt mechanism on his wheelchair, I will be running around in circles with the provider who is already banging his head against the proverbial wall.
In other words, there appears to be no way for an individual or a guardian to directly intervene to find out about the status of a request for Medicaid authorization for a service.
Meanwhile, I am spending most of my energy on trying to keep government-funded advocates from "helping" to liberate my sons and people like them from the services they need.