Today I scheduled his three-year assessment with his managed care org (MCO). They come to our home and assess what he can do and what he can't do, but because he can't speak for himself, I have always done all of the answering, and I'm sure that's true for many parents and guardians.
Today the scheduler tells me that we must have two people present who have known Isaac at least 3 months, and I tell her that must be a new requirement because unless my case manager was present (I don't think he/she has been to most of these assessments), I have always done it solo. I'm way too honest and said it's painful enough for me. I don't want to inflict pain on someone else. I did laugh out loud, but I wasn't laughing inside. Note: The assessment can last up to 3.5 hours while everyone is sitting around my kitchen table.
I told her that the last two times the assessors have come into my home (they are always very nice people), Isaac is okay with it until he's not. One time AFTER A FEW HOURS, he turned off the lights and put all of their paperwork in folders and opened the front door. He wanted them gone! She said she would note that in his file.
I'm always very pleasant, and I was very pleasant on the phone, but it's exhausting. She said I needed another person to be at the assessment, and who should that be? I gave her my husband's name, knowing full well he does not want to take off four hours of work for these rapid-fire questions.
The questions are like this: Can Isaac dress himself? What level of support does he need? Well, the answer is yes, he's independent, but that's because he doesn't wear shirts or pants with zippers, buttons, or snaps. He can't tie shoes. And he wears the same thing every day. So how do I answer? He needs some support to do those things and if he were to put on dress clothes, for instance (good luck with that, by the way), he would need assistance to get the whole outfit on, belt buckled, etc. A lot of the answers are gray instead of black/white and it takes forever.
As the woman on the phone was signing off, she said, "Great! They will see you and your boyfriend at the appointment in June." I asked who that referred to and she said, "I do apologize."
To all of my boyfriends past & present: skip the assessment because it's not worth all the pain and suffering.