I was going through my mail the other day when I noticed a letter from the state of New York. It was a wonderfully articulated and very official document letting me know that as of a certain date it was a state mandate that I had to enroll in a “long-term managed healthcare program.”
Simply stated, this is a system that is supposed to “streamline the delivery of long-term health care” for those who receive benefits from programs like Medicaid. And now I had to choose from a laundry list of providers, none of whom I was that familiar with.
So being a good consumer I, along with my family, chose a provider called “ICircle.” After trying to navigate a very complicated and confusing website, we set up an appointment with the intake nurse. The intake interview — to me at least — seemed more like a sales pitch than anything else. After the nurse’s somewhat rehearsed, but very in-depth description of the program, we signed up. This included some testing that — to me — seemed more like an I.Q. test than intake for someone who was in need of comprehensive healthcare. I was also told that if any of my doctors weren’t a part of their program, they had to enroll. Also many of the medical supplies that I used were not a part of their program; I would have to use their brands of things such as adult diapers, bed inconvenience protection pads, etc. Too, there was the possibility of us having to pay out of pocket if I wanted to use the name brands that I was used to getting. All of this seemed like something out a George Orwell movie in which Big Brother was dictating to me what products I could and could not have available to me.
Next came the “tasking tool.” This is used to determine how long the client needs to complete certain tasks. Thus identifying — in this individual’s estimation, anyway — the level of services and coverage available to the perspective client. Then I was informed that due to my enrollment in this program, the hours of aid services I receive through the Consumer Directed Personal Assistance Program would be cut. All of this information had left me — along with my family who are my advocates — totally confused and honestly panic stricken!
Desperate and confused, we were able to reach out to an organization here in Rochester, New York, called the Center For Disability Rights (whom I like to refer to as “The Disability Cops”). They put me in touch with a consumer advocate specialist who has been invaluable in guiding me and my family through a very time consuming — and at times frustrating — process of getting our basic needs met. At the time of publication we have filed a grievance with the state health department to get the proper amount of CDPAS hours needed for my home care needs. And after trying to search out another long-term managed healthcare provider it looks as if ICircle is the best they can come up with.