Updated: Aug 25, 2019
I have MS, I'm on the physical disability waiver. My caregiver made an error in her daily records, she did not know she was supposed to include the N1 code which indicates assistance with dressing. I had discussed with my United Health Care case manager that this was just a misunderstanding, that work was being done, and that the code would be on all future daily records. At the state fair hearing appealing the reduction in my level of care this case manager testified that this code was on none of the daily records and that the work was not being done. He neglected to mention that the code was on all records after I discussed the matter with him and that he had been informed the work was being done. He lied under oath and gave false information to the administrative law judge in an attempt to cut my services. I have a recording of the conversation prior to the hearing to prove this. I had asked my new case manager approximately a year later if he was still employed by UHC after lying under oath, she stated that he was. The next year during my needs assessment interview they were asking questions regarding my ability to prepare meals and do house cleaning. I told them I do nothing of either of those due to severe fatigue of MS. The interviewer continued to ask if I could do specific task, each one simpler than the last. The last question for meal preparation was, "can I open the refrigerator?". I said yes, I could open the refrigerator. The last question for house cleaning was, "if handed a a small wet rag after a meal could I wipe the spot on the table directly in front of me?" I told her that I am not a complete quadriplegic and I suppose I could do that. Based on those 2 answers she determined that I was capable of doing up to 50% of all meal preparation and up to 50% of all the housecleaning. Again, I have a recording of this conversation. UHC did end up withdrawing the reduction to my level of care, but not until the day before it was going to go to a hearing. Before that they had made an offer to not cut my level of care if I signed a gag order to not share this information or recording with anyone else. My attorney with disability rights Iowa told me they could not do so.
Far more important than the struggles I've been through having to fight nearly every single thing thrown at me all the way up through a state fair hearing are the multitude of other people out there don't have the skills, knowledge, determination, and perseverance it takes to appeal, appeal again, and appeal again every time their services and supports are being ripped away from them. I fear that thousands are just getting run over by the MCO's and are unable to go through the complicated lengthy appeals process to fight for themselves. Far more than for people like myself, it's for those people that we need to get the system changed!