Thursday, September 13, 2007

My three-year-old goes hungry because of "protocol"

There was a big story in the news here that on the first day of school for the state-run Recovery district, something like 40% of the registed kids didn't show up. It turns out that many families had registered their kids at more than one school - probably one Orleans Parish and one Recovery, and maybe a private or charter as well, to cover their bases in case their first choice turned out not to be ready to open by the first day of school. Last year lots of kids got turned away either because the school wasn't ready or because the child's enrollment had been lost. It's all administrative chaos. Without any way of predicting numbers, there's no way to set budgets, assign classrooms, etc. You'd think someone would have a central list of all the students in public schools and what schools they were assigned to - but no.

Both the teacher and the aide said Susan did really well yesterday at her first full day of school. I think they're surprised, having been prepared for the kid on the year-old evaluation. My big beef today, and it's a big one, is that they've decided they have to have orders from a gastroenterologist that says she is allowed to eat food orally. We already submitted a diet plan from the pediatrician that explicitly said she should be fed orally first, and then get a tube feeding at lunch time to supplement what she takes by mouth. Strangely enough, it's not the tube feedings that have to be approved by the G.I., just the oral ones.

Since she doesn't see a G.I. regularly (her feeding issues aren't digestive, they're behavioral), I don't have a doctor who will just dash off a script for me to fax them. The doctor wants to see her first, which I can understand. The thing is, we had the feeding plan written assuming she'd get oral feeds, so the one tube feeding at lunch time is not enough for the whole day.

She was hungry today, and was reaching for food at snack time, and they wouldn't let her have it. Can you believe this is SUSAN, and she actually wants to eat something and they won't let her???

I'm going to beg the GI nurse to squeeze her in tomorrow. I'm pretty sure the GI requirement is yet another rule the school and/or district (I don't know which) has pulled out of its ass, but I don't have time to fight with them on it.

It seems that the administration is just gridlocked. The more I've thought about it, the more troubled I am that they let a 3 year old go hungry, because protocol says they need approval from a specialist instead of her family doctor to let the kid eat. Something is just upside down there, and part of me is feeling that it's nothing but harassment to make us give up and go away.

Tuesday, September 11, 2007

Three steps forward, two steps back.

It's the story of my life, I tell ya. I'm just going to copy and paste some posts from the x-treme therapy thread at TableTalk, where I've been chronicling our struggle to get Susan into school.


We're still getting bounced around between two school districts and the charter school Susan is supposed to start at in the fall. She hasn't had any state-sponsored services since she aged out of EI last November. I have providers lined up who work for the state-run school district, but nobody in administation can agree on who should do the EIP. The school itself is balking about taking her unless she gets an aide from the city school district. I'd be perfectly happy for her to have an aide, but I don't know how much the city is going to want to pay for one. We're going to have to bring in a lawyer for the next meeting, and I had hoped to avoid going that route. There's already a big lawsuit in the works about the charter schools turning away special needs kids outright.

Laws? What laws? This is Louisiana, we have no laws!


Susan's starting at public school next week, in a Montessori pre-k classroom with 3, 4 and 5 year olds. That should give us access to some more resources than we've had this past year, both for evaluation and for therapy. If it becomes apparent that she does have some kind of permanent disability, I am going to need to re-evaluate whether we stay in Louisiana or move to another state with better programs. The school she's starting in is very good, and goes through 6th grade, but if we're going to have to relocate eventually it would make more sense to do it when I finish law school than after I've been working here for a number of years.

9-5-07 (10 am)

Our ongoing saga had another plot twist this morning. After talking up going to "big girl school" for the last two weeks, and making two advance visits for her to get comfortable with the classroom and teachers, Susan was turned away from school this morning because for some reason the aide wasn't ready for her to start. She'd already been pushed back ten days from the official first day of school. Yesterday she had her goodbye party at day care. I guess it was premature.

Heh. Premature.

I am SO TIRED of this shit.

9-5-07 (7:40 pm)

It was just today that they turned her away. They told me the Friday before the first day of school that she couldn't start right away because the aide hadn't been identified yet, but committed to today. That's already six missed days of school, but I accepted it. I was told then that we'd have the IEP meeting today, I'd show the aide how to feed her, and she'd be all set. Susan visited the classroom with her dad last week and with me yesterday. While I was there yesterday I asked the principal what time they expected the IEP meeting to be, so DH and I could both be there. She didn't know and said she'd have the coordinator call me.

The coordinator didn't call. We got a call at 6:20 p.m. yesterday from someone at the district, saying the IEP meeting wouldn't be until Tuesday next week. This was on voicemail, she said Tuesday was the first time everyone who needed to be there was available, bla bla bla. Note that they never asked if WE were available and the scheduled time conflicts with one of my classes. The message from the district didn't say anything about attending school until Tuesday.

So this morning DH took her in, and whoever was watching the class (the teacher was at CPR training) sent them to talk to the principal. The principal told him that Susan can't start school until she has an IEP.

I'm pretty sure that this rule that she can't attend without an IEP is bullshit - after all, most kids DON'T get IEPs. It's also bullshit that they can't get the damn meeting scheduled. She's been on the roll to attend this school since March. The school and the district keep saying it's the other's job to schedule IEPs. It seems like rather than keeping her out of school, they could just hold the freaking meeting with whichever people ARE available and fill the others in later.

The lady at the district who called yesterday evening claimed to have tried several times to reach us - but never left us a message before then. They have four numbers for us, all of which have voicemail. Our cell phones have caller ID too, and there haven't been any missed calls from the district. What the F'ing F?


Fortunately, her old day care hasn't filled her spot yet so we just took her back there, and they can take her until the school gets its shit figured out.

I'm not sure how much she understands. We'd been explaining to her about going to big girl school, but she wasn't upset about going back to day care. DH and I are pretty upset though. It feels a lot like last year when the university's day care said they didn't have space for her, but strangely all the other law students' kids got in. She's just this sweet little girl that nobody wants to be bothered with.

Oh yes, the lawyers have been called. We had actually gotten an advocate involved earlier in the summer when we were getting the runaround about whether the school would take her and having the district assign an aide. All it took was for the advocacy organization to submit the written request to review the file, and the district suddenly agreed to hire the aide. I talked to her this morning and she's calling back the people we talked to yesterday. She confirmed that there's no reason not to start school while the IEP is pending.

This actually goes back further than March. Susan turned 3 last November. She was evaluated by the district two months before that. Her evaluation said she should get a bunch of services, but they never wrote her an IEP. If she had an IEP, then they'd have to provide the services. They lied and told me they didn't have to do an IEP until they enrolled her full-time in a public school, and there wasn't any space available in a school. In March she was offered a space in a segregated special needs pre-K classroom, but I declined it because it was too close to the end of the school year to move her, and because she does not need to be in a special classroom. I hadn't heard about the law pertaining to Least Restrictive Environment at the time. I was told that since we turned down that spot, we had waived her right to receive any services. I offered to take her to the school just for services. They said her evaluation required services to be provided in a full-time special education setting. In other words, they lied to me to get out of providing any services or writing an IEP that would have made it easier for me to force them to provide services.

Sorry if I'm overuseing the word "services." For lurkers, it's shorthand for occupational, physical, and speech therapy.

Once this immediate matter is settled, I want to pursue getting reimbursed for what I paid out of pocket for therapy last year. I'm seriously tempted to get into a lawsuit, either on our own or in a class action, for the civil rights and IDEA violations. What they're doing is wrong, it's against the law, and it's not just my kid it's happening to.

Today, 9-11-07
The much-anticipated IEP meeting was today. It was stressful, and I'm so glad I had DH and the family advocate there. Our main point of contention are that they have no back-up for the aide, so if she is sick or otherwise misses work, the school is saying Susan won't be allowed to come to school that day. I said that for the short term DH and I are willing to come in ourselves as backups if necessary, but we won't accept Susan being excluded from school, and in the long term they need to come up with an alternate plan. The therapists did at least say that if we had to keep Susan home, we could bring her in for therapy - an option that we weren't given last year.

They tell me that it took them since March to find someone to hire to be the aide, and that she moved her from Dallas for the job. I'm doubtful that that story is entirely accurate, but I do acknowledge there is a workforce problem here. The thing is - this is a city of two hundred some-odd thousand people - how is it possible that there aren't other kids in the district that need aides? Where are they? How can there be no plan for back up care?

I suspect the answer is that the kids have all been shoved into a special ed classroom, like the one they tried to shove Susan into last year. Can you imagine a kid like Tarti's Max, who has physical challenges but is bright, being swept into a classroom where all the other kids have significant intellectual development delays? How unfair is that? How illegal is that? I suspect that all the families in that situation have given up and moved elsewhere. That might yet be what we have to do.