about a month ago i received a rejection notice from masshealth (state medicaid essentially) rejecting me from the PCA (personal care assistant) program. among other things, this would have allowed me to pay a person to help me with stuff that is difficult to impossible for me to do by myself: bathing, food prep, laundry, cleaning. living stuff. their ruling was that, against the advice of my PCP and the nurse who filled out my paperwork. the nurse called me to tell me i should appeal.
about two weeks ago i received a call that, contrary to my previous assumptions, there was in fact a meals on wheels program for disabled people, with "only" weekdays lunch and dinner five days a week. i was overjoyed and relieved. they told me someone would call later with some information and to ask about dietary restrictions. a few days later i received that phonecall, and upon telling them i had a gluten allergy, i was told that lunches were always sandwiches, but maybe i could "pick around on some of the dinners." a further call informed me all of their sauces are thickened with gluten; there was absolutely no way the program would work.
a few days ago i received a call that my SSI payment would be going down because i had "unreported income." i've told them i received music royalties from the start, but they likely misplaced that info when they fucked up my recert when i moved. SSI is only income-based when it counts against you; it doesn't matter if your total income is less than expenses, if you have any income while receiving SSI, they deduct it from the SSI income you're eligible for. they do have a cap, below which income won't count against you, which is apparently $20/month. i kept asking clarifying questions and the person kept contradicting herself or not being clear, and she promptly figured out how to end the call and pass the buck once i became unable to hide how upset i was getting. it is unclear whether i am going to owe thousands of dollars.
this morning i received a phone call for my court date appeal with Masshealth about the PCP program. it became clear that this was not an appeal, it was a negotiation session, where Masshealth's representative would try to talk down the number of hours that the nurse had filed on my behalf. if i hadn't appealed, they would have rejected all hours, but instead because i had a nurse who understood the process and would advocate me, i was able to get an (admittedly reduced) amount of hours, so i can finally get (some of) the help i needed.
i'm very lucky to have supportive friends and family, so i'm going to be fine. it's just unconscionable how convoluted, demoralizing, debasing, and despair-inducing it is to be disabled and to try to get the help our society purports to offer.