One on One Aide Needed...

[MyLittlePrincess]

Im am new here, and my 8 yr old daughter is multi handicapped. She is wheelchair bound, no speach but vocalizes, developmentally delayed, medically fragile (GERD and seizures) and a failure to thrive due to her many and severe food allergies: peanuts, soybean, eggs, whey, orange and tomatoes.Her syndrome is 22q13 deletion and is best described as a combination of cerebal palsy and autisim. Although she is technically not diagnosed autistic the children with this syndrome display a lot of traits of autisim.
I am going to describe our situation as best I can without HOPING it turning into a lengthly post. Here I go...

She is attending a LRE class in a public school system. This is here second year. The teacher is wonderful and her staff is well.
Currently there are 8 children (technically 9 but 1 is pretty much homebound due to some severe medical problems)
4 are wheelchair bound and high functioning, and none of them speak. My daughter included. The other 4 are very mobile and low functioning (2 are Downs and the other 2 are AHDD, ADD or in that spectrum) Those 2 are also VERY ACTIVE!! As I am sure any parent here who has a child like that knows that they have the energy level of 5 children in 1! So we have 8 children were 50/50 are on complete opposite ends of functioning levels. And there are 4 adults.
I know some may think this isn't too bad, but considering what has to be done in a day I think its overwhelming for staff. Getting kids into standers, walkers, communication sessions, scheduling times with the pt, Occupational Therapist (OT) and speech therapist and so on....
My daughter is still learning to feed herself and its important she eats what she has because she doesn't have a whole variety of foods in her diet. So its important she gets her nutrional level to avoid going to a feeding tube.
She has come home many times and finding out that she hardly ate or drank anything. Twice she has come home in the same diaper I sent her to school in.
I was quite upset over this but also understand how it could happen if the staff appears to be shortstaffed!
Last year we had this problem and several times I brought my daughter in and it was just the teacher with 5 kids! She was trying to feed my daughter her breakfast (our county does breakfast as well as lunch at school) and had to keep getting up and deal with the AHDD child who was making chaos!! I certanly don't blame the child because she couldn't help it, but I do blame the system as they have created a situation that could turn ugly.
I have spoke with the teacher many times and we have discussion and tried several options to help avoid these things happening. After the diaper incident I said ,"I think my daughter will be better off with a one on one aide." The teacher AGREED with me wholeheartedly, and told me to make sure I keep saying, "my childs needs ar not being met." And be a squeaky wheel because the administration HATES parents who are pushy about it.
I've already informed the teacher and principal that I want a meeting. The principal said I could give the SPED director a call and ask, but there is no money in the budget. And if I want to call a meeting I can, but she thinks the director will say no anyway. I told her I still wanted a meeting.I've requested the director be invited, afterall if its his decision no sense putty footing around the table to wait.
I also went over my daughter's IEP last night and there are a few spots under Modifications and that where it does say "one on one assistance" so I don't know if I have them on a technicality or not.
The other thing Im going to bring up is the fact that there are at least 4 children in the school system who are Austistic only and have one on one aides. Two of the parents of these kids offered to attend the meeting with me as support.

I got my battle gear on /ubbthreads/images/graemlins/war_mom.gif and IM READY TO GO!!

My apologies for making this so lengthy!!

 

[Sharon1974]

There are many children that have one on one aides that are not as bad off as your daughter. I would be livid if my child came home in the same diaper she went to school in. How would the teacher like to sit in a dirty diaper all day? Any to have hardly ate or drank during the day? This could lead to medical consequences.

My son doesn't have an IEP, so I can't help you there, but I think you could get an aide for your daughter if you keep pushing. If you don't get anywhere with the IEP meeting, there are other steps you can take. Her needs are NOT being met. Not even her basic human needs are being met at school, let alone her academic ones.

 

[Sheila]

Glad you found your way here. Welcome.

I've already informed the teacher and principal that I want a meeting. The principal said I could give the SPED director a call and ask, but there is no money in the budget. And if I want to call a meeting I can, but she thinks the director will say no anyway. I told her I still wanted a meeting. I've requested the director be invited, afterall if its his decision no sense putty footing around the table to wait.

As the parent you are a full member of the IEP team and you can call an IEP meeting at any time. It's very important to put the request in a letter and send it via Certified Mail. (There are sample letters in the Sp Ed Archives if you need them.)

Technically, no one but the IEP team members have any control over student placement or services -- including the Sp Ed Director unless she/he is an actual team member.

Always remember that it doesn't matter how many people attend a meeting or what their titles may be, there are two votes -- one for the parent, and one for the school district.

The school district's budget is not the parent or student's problem. If your child needs a 1:1 aide, then the school district must provide it. Getting it written into the IEP is the trick.

The following applies to IEPs and 504s. From https://web.archive.org/web/20050201024121/http://www.504idea.org/Intersection_Dyslexia.pdf

"It is important to recognize that the cost of a device or the difficulty of providing a particular
service are of no concern to federal law. If the service or device is necessary for FAPE,
expense or inconvenience does not matter. Note that OCR has seriously chastised schools
where the decision about what services or devices to provide to eligible students is made on
the basis of cost and convenience rather that on the basis of proper FAPE considerations.
(See, for example, Modoc County where OCR found a pattern of “school officials controlling IEP team decisions, disapproving requests or suggestions with no explanation, imposing
procedural delays, intimidating staff and parents, and instructing staff to generalize IEP’s....
[These officials] presented no educational justification for their decisions and accepted no
arguments.” OCR finds that to the extent that evaluation and placement decisions were made
by anyone other than the appropriate ARD Committee or IEP team, they were in violation
of 104.35(c). Modoc County (CA) Office of Education, 24 IDELR 580 (OCR 1996)."

When you go to the IEP meeting to get the 1:1 added, take a Parent Attachment to the IEP with you (see Glad you found your way here. Welcome.

I've already informed the teacher and principal that I want a meeting. The principal said I could give the SPED director a call and ask, but there is no money in the budget. And if I want to call a meeting I can, but she thinks the director will say no anyway. I told her I still wanted a meeting. I've requested the director be invited, afterall if its his decision no sense putty footing around the table to wait.

As the parent you are a full member of the IEP team and you can call an IEP meeting at any time. It's very important to put the request in a letter and send it via Certified Mail. (There are sample letters in the Sp Ed Archives if you need them.)

Technically, no one but the IEP team members have any control over student placement or services -- including the Sp Ed Director unless she/he is an actual team member.

Always remember that it doesn't matter how many people attend a meeting or what their titles may be, there are two votes -- one for the parent, and one for the school district.

The school district's budget is not the parent or student's problem. If your child needs a 1:1 aide, then the school district must provide it.

The following applies to IEPs and 504s. From https://web.archive.org/web/20050201024121/http://www.504idea.org/Intersection_Dyslexia.pdf .

"It is important to recognize that the cost of a device or the difficulty of providing a particular
service are of no concern to federal law. If the service or device is necessary for FAPE,
expense or inconvenience does not matter. Note that OCR has seriously chastised schools
where the decision about what services or devices to provide to eligible students is made on
the basis of cost and convenience rather that on the basis of proper FAPE considerations.
(See, for example, Modoc County where OCR found a pattern of “school officials controlling IEP team decisions, disapproving requests or suggestions with no explanation, imposing
procedural delays, intimidating staff and parents, and instructing staff to generalize IEP’s....
[These officials] presented no educational justification for their decisions and accepted no
arguments.” OCR finds that to the extent that evaluation and placement decisions were made
by anyone other than the appropriate ARD Committee or IEP team, they were in violation
of 104.35(c). Modoc County (CA) Office of Education, 24 IDELR 580 (OCR 1996)."

When you go to the IEP meeting to get the 1:1 added, take a Parent Attachment to the IEP with you (see https://web.archive.org/web/2009102...es.com/Athens/Oracle/1580/twin_documents.html ). By law, specifically Prior Written Notice, the school district have written documentation about parent recommendations. This document "helps" this requirement along. They most certainly will not want the reason for refusal to be "because it's not in the budget."

Fill out your requests before going to the meeting. You can handwrite the rest at the meeting. Be sure and keep a copy for your files.


Be sure and read the Procedurals and Safeguards info the school district is required to provide you. It should give the specifics of parent options when an agreement with-the sd can't be reached.

 

[slsh]

Boy, this does bring back memories. :wink: Went thru this for years with- my oldest, though what ultimately happened was he ended up in a segregrated (no LRE in IL) class with- 4 or 5 aides, two teachers, and 12 kids. Staffing was definitely good. He does have a 1:1 nurse paid for by SD now due to his seizures (status), but the nurse also does diapering and feeding.

Couple of thoughts - the feeding and diapering issues are huge, especially since you're trying to avoid a g-tube. Basic care of your daughter is essential. Not having enough staffing to feed/toilet her is a "safety issue" (big flag in every IEP mtg I've ever been in, get's the SD's attention fast). Skin breakdown, dehydration, yada... you know the drill. She should have an assigned trained aide for feeding, consistently, every day, both to insure she actually does get fed but you can also argue that this will assist in addressing Occupational Therapist (OT)/ST goals (oral motor and such).

Having a combination of ambulatory and nonambulatory kids in a classroom with-out enough staff is tough. Your daughter is not receiving "educational benefit" from her IEP if there isn't a staff person *with* her (I'm assuming her motor/self help skills are limited). It's not like they can give her an assignment and expect her to complete it independently. While there is a certain amount of down time in these types of classrooms, more so than in reg. ed., my experience is that if you have a nonverbal kiddo who isn't demanding attention, he/she won't get it until all the other fires have been put out. That's not education, that's warehousing.

The downside to having a 1:1 and something that needs to be very specifically addressed is what happens if the aide is absent. Who fills in, with what level of training? My son has missed at least a full semester of school in the last 4 years due to no nurse being available. You need to make sure there are contingencies built in.

One thing that might help is where they have one on one assistance noted in modifications on the IEP, get *specifics* - Mrs. Smith will be responsible for transferring child to prone stander 1 x daily, Mrs. Jones will be responsible for setting up communication device. While I've never had diapering/feeding (aside from oral motor goals) in the IEP, those *are* services that need to be provided for FAPE in LRE and if they're balking at 1:1, get those written as goals - Daughter will cooperate in hygiene at 9, 1, and 2:30. Mrs. Classroomaide will provide 1:1 assistance with- those services. Daughter will self feed with moderate assistance. Mrs. Classroomaide will be trained by Occupational Therapist (OT)/ST to insure maximal encouragement of proper oral motor skills, and will assist daughter one a 1:1 basis daily at breakfast and lunch time. Who implements IEP goals is written on IEPs but usually it's pretty generic - classroom aide. Maybe by getting them to specify *which* aide, and who would take the aide's place in the event of illness, you could end up with- in essence a 1:1 throughout the day. Perhaps when SD sees that daughter needs 1:1 assistance globally, and that you're holding them accountable for providing that support, they'll be more inclined to actually get one body for her.

Just some thoughts. Good luck!

 

[MyLittlePrincess]

/ubbthreads/images/graemlins/big_hugs.gif THANK YOU!!! THANK YOU!!!
I am so glad I came across this website!! I have gained so much info in the last 24 hours its wonderful!!
I am printing this thread up, and I hope you don't mind but I am going to highlight some of the stuff you have said that I can engrave it in my mind.

This is the first time in five years that we ever had a problem with the IEP. Her first school was so dedicated to doing whatever it took to help the children! Boy do I miss that school!!

 

[MyLittlePrincess]

Here is an update....
we had a meeting scheduled for this coming friday. But this morning when I dropped my daughter off the teacher said she had a meeting with the principal who said that she was extending 6 extra hours a day to extend the hours of the aides already in the classroom.
The teacher said this would allow for one on one assistance with my daughter because now they will have the extra help.
She also said this would be a trial and if I didn't like it I could still get a meeting and request the one on one.