Friday, January 28, 2011

School issues...

I promised a mama bear post so here it is:

Charlie is 3 now and eligible for preschool through the local school district. Obviously in order to attend school she needs a nurse with her the entire time, including transportation. The school district insists they cannot use our nurses...they have to use THEIR nurses from an agency.

So here are the problems with that:

1) Least of all, training more nurses and ensuring they can actually handle Charlie. If you've read the blog for a while you know this is no easy feat. But I know with patience and persistence we can get this done.

2) Charlie's nurses (particularly her main nurse) will have her hours cut considerably. She loves Charlie, but she has to think of her own family first. If she cannot get hours at our house, she will have to go somewhere else. I do not expect it will be easy to find someone to replace her. Nurses don't generally want 4 hour shifts.

3) If Charlie gets sick and has to stay home, the school nurse doesn't stay home with her. *I* would have to stay home with her. Which would be great if I had the option of being a stay-at-home-mom. But I don't. I'd have to miss work, which would lead to smaller paychecks and if done frequently, job loss. Also, if the school nurse cannot be there and they can't get a replacement in quickly enough (one that has been trained with Charlie and approved by me!), guess who also has to miss work? Me!

The school district can't seem to tell me WHY they can't use our nurses. They said they might see if their agency would be willing to hire our nurses, but they'd be taking a HUGE pay cut (like half) to work for the agency during school hours. They won't tell me if it's a legal issue or a financial one or what.

No one has been able to tell me how this affects her home hours. Do her home hours get cut to account for what she has at school? If she's in morning preschool (which would be better for her since she is tired and cranky in the afternoon), she would need a nurse with her at home, before the school nurse takes over on the bus. Our nurses come in at 6 at the earliest. They are not allowed to work only from 6-8ish. They have to work a MINIMUM of 4 hours per shift. So... what? I have to have them come in at 4 in the morning? So they can wake me up when I really just need to be getting rest?

Charlie will get more out of going to preschool. Right now, they only send out the therapists once every 2 weeks. How is it "fair and equal" if she would be getting therapy more often than that AT school? They have more equipment to work with at the school, like a stander, which we really want to try her in. And of course, I'd love for her to be able to be around other kids.

I know the school system across the entire country is jacked up, but this is ridiculous. They KNOW this is an issue. When they saw that I was upset, you know what they said? "You aren't the only person who's had to go through this you know." As if that's supposed make me feel better. If I was the ONLY person complaining, I could see how maybe I was just being over-sensitive. But they are acknowledging that this is a common problem. They should be fixing it! Not telling me that since other parents are complaining, it's ok.

Argh. "Fair and equal" indeed.

Oh and since I've been complaining and at one point told them we would have to keep her home until we got everything worked out, they keep pushing me to just keep her home. Twice in the last two days I've had someone call me and say "So you'll just be sticking with the home-based program then?" No, I'm going to fight you dammit! I don't give up *quite* that easily. And if nothing else, it's the principle of the matter. Even if I intended to keep Charlie home, I'd still be giving them hell because it ISN'T RIGHT. Special needs kids shouldn't have their home lives turned upside-down because there's some dumb rule about not using home nurses.


Katie said...

That's so frustrating :( Good luck!

sarah said...

I can see how you would be frustrated!! I have never met Charlie, but I know she should go to school!

I wonder if it is the district that is causing the issue, or if it is a state issue? The first year that my little guy was in SN preschool he had a little girl in class who had her own aide or nurse ( I am thinking it was a nurse 'cause I once saw her dealing with what I believe was a feeding tube...)

Just an idea, but can you get a letter from one ( or more) of Charlie's doctors detailing how difficult Charlie's medical issues are to train a nurse on? They could basically lay out how important it is for Charlie to have HER nurses, not just anyone who has an RN behind her name, take care of Charlie. I would also do some research and find some advocacy agencies that might have other ideas as to what language needs to be used to make the stupid school district see things your way.

Cat said...

GRRRRRR the more I read about the way public schools in this area are messing with families who need accomodations and/or services, the more I dislike them. If you want her to attend the preschool and she's eligible, then darn it they should accomodate her needs by allowing her nurses to be present with her. Keep fighting it until they realize that you aren't budging, don't let them bully you into the home-based program (although it is excellent, it is obviously not what you feel is best for her and they need to quit trying to push you that way).

Debbie said...

Hey Momma, just playing catch up and wanted to give you one idea. When Amelia was in preschool in NYC she had a nurse that went to school with her who was also registered at our home nursing agency - this meant that when she was in home with us, she was on the agency clock, or at school, on the board of Ed clock. If you can find someone willing to do that, maybe you could figure that out. Good luck and fight on!

Anonymous said...

I teach a medically fragile classroom (ages 3-19yrs!) and we have had home nurses come a couple times (they were quickly replaced by school nurses) but we really try to use school employeed nurses. It became a privacy issue...for the other kids. The agency nurse knew too much about the other students (confidential things) and other parents had an issue with it. Our school employeed nurses (I have 4 in my classroom) make a fraction of what they could make in a hospital or dr's office but they are moms with kids and the school schedule is perfect for them. We have 3 "back up" nurses that can cover when one is sick. But I could (as could my paras) do anything the nurse can do since we know the kids so well....but legally we cant deep suction or suction a trach. Thus the need for the nurses. Funny though...we can do g-tube things and cath a child....but cant suction them! I do see your point with Charlie though...I have no idea why YOUR district does not like private nurses in the classroom but I am pretty sure its nothing legal...just their preference. A neighboring district of ours has home nurses all the time....I am sure it saves them a lot of money. But on the other hand....any one of my students that requires a nurse be employeed for him/her brings in 35K+ more a year then one that does not need the district to employee a nurse. Good luck with it all! And IME, its the loud parents that get what they want lol. So keep it up!