I've shared with you before about how things didn't get good for Ashley in school until she reached high school. Before then, each IEP meeting brought a long list of things she couldn't do. But with the amazing staff at high school, and what I believe might be an attitude shift with my school district, IEP meetings now are a celebration of Ashley's accomplishments. And, when there are things with which she needs help, the approach is to find the right supports so she can continue with her lists of accomplishments.
Unfortunately though, we have not left behind those meetings where deficits are on the agenda.
Each year Ashley has a meeting to develop a 'Level of Functioning' (absolutely hate that term) for her continued qualification for a Medicaid waiver. It's a meeting that reminds me so much of her elementary school IEP meetings that it brings a sense of deja vu.
In these level of functioning meetings, we must go through pages and pages of tasks and answer on a scale of 1-5 (with 5 being total care) how much assistance Ashley needs. If Ashley doesn't have a certain number of 4's and 5's, she will not continue to qualify for the Medicaid waiver, and trust me, we really, really need the services provided by the waiver.
I just hate that we have to go back to focusing on the negative rather than the positive. I hate that her continued right to stay out of an institution is judged by someone (or some group of someones) who sit around and discuss whether she can bathe herself, whether she wears Depends, and whether or not she is aggressive towards herself or others.
I understand that there is a lot of abuse of Medicaid resources, and that meetings such as these are necessary to weed out that abuse, but I always leave depressed. Yes, my beautiful daughter has a whole list of things she can't do or things she needs a lot of help with. Yes, those things will more than likely continue for the rest of her life. But could we throw in just a few positives during the meeting? She is really so much more than those 8 pages of failed tasks....
We have our medicaid waiver review in July. I already talked with our rep and she said Peyton will continue to qualify this year but I know we will lose the waiver at some point..and her medical costs are still going to be the same so that kind of sucks. My husband has somewhat better insurance now, atleast better than we had before as primary but still we will have to pay ALOT more out of pocket plus we will lose HIPP which basically pays our mortgage!
ReplyDeleteWhich waiver are you one? And oh yea, the HIPP. I had totally forgotten about that!
ReplyDeleteThe ECDC waiver but she really only still qualifies because she's a child and unable to do the daily activities of living by herself, she likely will be able to at some point. So her diagnosis will hold no ground for us.
ReplyDeleteI wish VA would have some type of katie beckett type waiver as well.
Took me a while to find out about HIPP but I was so glad after we did because it was amazing. Plus medicaid isn't paying more than 2k per year when P had one bill alone that was over 100k last year.
We pay $145/week for our health insurance and we get the medical portion of that back (not the vision/dental) with the HIPP.
I took me a while also to find out about HIPP. It's almost like they try to keep it a secret. My employer pays most of my health insurance, but I do get back the part I have to pay.
ReplyDeleteAshley was on the EDCD until this past fall, and my son, Ronnie, is still on it. He won't qualify for any other waiver.