I thought I’d better check in and give an update on the school situation before time slips away and my already overloaded brain forgets …that’s a small window of time these days!
Let’s see, we’ve found out that —for right now— we cannot pull Nik out of school and get his therapies covered by Medicaid. On the surface, that really sucks; but there’s a glimmer of silver in this cloud somewhere. I’ve been having lots of conversations with lots of people who have volunteered to help us.
One is the “high muckity-muck” from Medicaid who is responsible for authorizations and works right under the Medical Director. She also happens to be the person who was Nik’s first case manager when we moved to DE in 2005; she has more than a passing acquaintance with Nik’s case. She basically told me that the school needs to step up and deliver the necessary services. We need to go through the IEP meeting and then look at what school hasn’t delivered on and whether Medicaid can bridge the gaps. A prime example would be feeding therapy; school does not do this so Medicaid will automatically approve it. (Um, wouldn’t it have been wonderful if the SLP at school had bothered to mention this like, oh I don’t know —A YEAR AGO so we could have done something about it sooner?!) But…Ms. Muckity-Muck has agreed to come to the IEP meeting to help do a little pushing back on the “Oh, no, that’s medical not educational” bull that’s been shoveled at us for the past year.
Did I mention that Ms. D —the world’s greatest OT —is also coming to the IEP? She’s basically going to tell the IEP team exactly what she sees and the amazing progress Nik is making with the right level of services. (He currently gets a total of 2 hours per week in 30 minute sessions.) She said to me today, “You know, Nik is so smart that if we can just get past all this sensory junk he’s got going on, he could really take off!” Did I mention we think she’s terrific? (She even called us tonight to give us some tips to help Nik after surgery tomorrow! Never would have gotten that from school, for sure!)
So let’s see…Duck #1 (Medicaid); check. Duck #2 (OT); check. Duck #3 just happens to be one of the most highly respected women in the local and state-level disability advocacy circles —and a woman I’ve know casually (very) for two years; she thinks Nik is a living doll, too. She’s the one I mentioned in my other post (I think?) who is an educational advocate for kids in the child welfare services system. Been playing this game for many years. She’s given us some good coaching so far. She will be at Nik’s IEP.
Finally, Duck #4 — the one we will keep in reserve in case we really need her — a legal aid attorney who does — ta da! —special education work. We haven’t made contact with her yet but she is a friend of a friend so we have an “in” with her when we need it.
So, while we aren’t thrilled with the idea of Nik having to be in school, we have greater hope that school will either deliver the goods directly or they will be backed up against that old proverbial wall and will have to provide funding for additional services.
I’ve been thinking a lot about some of the suggestions that commenters made on my recent post —especially about reduced hours. Since we still have the OT and PT authorization for a set number of sessions through early November —I checked it with Ms. Muckity Muck just to be sure —we are scheduling sessions two days each week in the early afternoon. This means I will take Nik out of school just before lunch, take him home to feed him, then go to see our beloved Ms. D and Ms. T. That leaves us a reasonable window of time to be able to go to the park, or my sister’s pool while the weather is warm enough, before Nik has to be home for dinner.
I am sure school is going to have a complete cow about this but I plan on pushing for that to be his daily schedule —leaving school at 11:30 each day. They’ve already lengthened the school day by 20 minutes on each end —making it a 6 hour 40 minute day. The change is just enough that it may impact Nik’s overall feeding and sleep schedule. He already doesn’t nap consistently at school —too much sensory input to be able to tune it out and relax —so his bed time ends up being earlier than “normal.” I won’t get into the whole complicated schedule we have to keep —what with meds before meals, meds with meals, separating one seizure med from the other, etc. Suffice to say, a seemingly small shift can have a domino effect that can have undesirable results. When Nik’s seizure meds are given too close together he is like a drunken sailor for hours afterward and is very lethargic and unresponsive in terms of interacting with other people or his environment. Great way to send a kid to school, eh?
Anyway, I am rambling now but the gist is this — Niksdad and I feel like we are pulling together a more concrete plan and have some more objective eyes than ours watching over the process. We hope that they can help us prevail in getting Nik what he needs.