So the new home health aide hours that Onondaga County has authorized—“effective immediately,” which was on Monday, August 20—are to go on the call-out list, which consists of about eight agencies that have contracted to serve poor people. John, the nurse, says it will take him two hours to do the paper work, including but certainly not limited to sending me two letters of my right to a fair hearing. Eating and getting showered apparently are not rights and are secondary to paper work.
He and Cathy Dutton interviewed me on Monday afternoon. John says he will definitely get the order on the call-out list by Wednesday. I need to be in a skilled nursing facility right now and I don’t understand why John says it’ll take him two days to get me on the list. I would think that when someone is that sick then they should zoom to the top of the list and get immediate attention. Imagine Emergency Room triage in which the guy who’s been gut-shot is put after the woman with a sprained ankle.
John doesn’t get me on the list on Wednesday. On Friday, he sends me an email that the order for my services has gone to one agency, not to the full call-out list. So I call John and get the message that he’s gone on vacation.
So I call supervisor Cathy Dutton and she says that the order for my home health aides has only gone to one agency because they—the Onondaga County, Office of Aging, Long Term Care Resource Center—has a special contract with that agency to provide services to difficult patients!
And how is it that I am a “difficult” patient?
Well, Cathy says, you said that you’ve had trouble with agencies before.
Because I have had trouble with them, I am difficult? Because a couple of for-profit home health care agencies have provided substandard care, I am difficult? Because I know my rights as a patient and require agencies to provide the required level of care, I am difficult? Because I hold agencies accountable for providing services at the level required by law, I am difficult?
And what absolutely terrifies me is what’s in the special contract for “difficult” patients. Just how do they plan to treat me differently than their other patients? Knowing Onondaga County and the health care system, I’m picturing aides who are all over six feet tall and have been trained in hand-to-hand combat.
So I try to talk to Cathy about my right to be treated just like everyone else; about my right to go on the call-out list. The way it works is that the Long Term Care Resource Center, i.e., nurse John Terry, sends out (by fax, probably) my order to all the agencies on the list, which is about eight. The agencies pick up the order, consult their aide list, consider the duties involved, look in their crystal balls, and then decide whether to pick up the order.
Once one agency picks up the order, then the rest are put on hold, even though all an agency picking up the order means is that they will send their own nurse to do an assessment and decide if they’ll take the case.
So I’m trying to get my rights back and be put on the full call-out list so that I have the chance to be considered by all the agencies, and Cathy Dutton says, “It’s not in your best interest.”
And there it is: one county employee who has met me once has decided what’s ‘in my best interest.’ I have ceased to be free. Because I am poor, the government has taken away my right to choose. Big Sister, who has sat with me for one hour, has decided what’s best for me.
I am sick with horror at what is being done to me, and it is being done because I am an activist. Because I speak out against government policies that result in delivery of services that are substandard, illegal and/or immoral, I have been designated as “difficult.” Because I hold people accountable when they are being paid by the taxpayers, my freedom to choose my care givers has been taken away from me.
Stunned and terrified, I pick up the phone and call Kate.
Richard Bach, author of Jonathan Livingston Seagull and other light classics, has written that the way to know a writer is to read what he writes because it is in his writing that he is most clear, most honest, most open. My true friends are the people who know me by my blog, and these friends include Loes in the Netherlands, Maggie in England, Maie in Canada, Don in Michigan and Kate, who actually works down the road from me here in New York State.
Kate and I did some business together a few years ago regarding VESID, which is the New York State Office of Vocational and Educational Services for Individuals with Disabilities. I had been diagnosed with the learning disability called “executive dysfunction.” Since I already was an award-winning writer, I asked VESID to help me get organized and get published. They said no, I should be trained as a receptionist.
This is a pretty cool three-part story that begins at https://annecwoodlen.wordpress.com/2010/10/01/tabula-rasa-by-vesid-part-i/ and you should check it out when you have time. It has a great ending.
Actually, having just re-read it, I realize that it doesn’t tell the ending, so let me finish that story right here, right now.
There was a fair hearing and there also was a committee meeting. The committee decided to turn down my request for services because I would require continued life-long support. The experts I had talked to at Syracuse University and Upstate Medical Center had told me that it would require a one-time-only intervention to teach me different ways to learn.
Then I asked who was on the VESID committee and found out that it did not include a single person who knew anything about executive dysfunction. Well, shit.
Needless to say, I not only got VESID to pay for a series of learning sessions with a psychologist who is an expert in the subject, but I also got “executive dysfunction” entered into the VESID system so now you and everybody you know can get services for that particular disability.
Then I sat down and wrote “‘Tabula Rasa’ by VESID,” the story of how VESID said I couldn’t earn money by writing. Then I got the piece published, received a paycheck, photocopied it and hung the photocopy on the wall.
Haw-haw-haw—sometimes I absolutely crack me up.