My child currently has an IEP under other health impairment with an attached IHP and the school wants to move her to a 504. There is no full time building nurse. She has a 1-1 aide at this time and they are looking to eliminate that position. My child has hypoglycemia unawareness. She is 7. I am wondering first what my rights are. I have checked a variety of website and have contacted the ADA, but not sure how long I have to wait for a reply. I know they are supposed to provide free appropriate public education, and not discriminate, but I don't know how I am supposed to convince them that this is medically necessary for my child to have access to medical care 100% of the time in the building (even if her doctors recommend it), 1-1 especially with the severity of her diabetes. She can go from 200 to 40 and start convulsing in about an hour after eating one day and need glucagon. She's not a typical diabetic (if there even is such a thing), she never follows the "rules' so to speak. The diabetes educators will tell us what should be happening at a certain age and it's not for our child. My meeting with school is coming up within the week. Obviously, we feel we need the 1-1 for at least another year or so because she's brittle and has no awareness of lows, and the school nurse isn't herself fully trained. The nurse splits her week as a couple days in one school, a couple days in another about 15 minutes away. She has said in the past that she would drive from one building to the other to administer the glucagon. My child would be dead in that amount of time and to have a nurse say something so ignorant is very scary. I am gathering information and reading, but wish there were some sort of documentation about liability schools need to be held accountable to care for all of our children regardless of their medical condition and without a full time trained nurse in the building I think they're not making me feel like they value my child's life as much as I do. Plus, I want to know if we go with a 504 like the school wants (which is an unfunded mandate) if we'd definitely lose the 1-1. How can we push to keep the current IEP in place which is funded? Help. Suggestions.. please..
I'm sorry I can't help on your main question - but I don't believe an IEP, IHP and a 504 are mutually exclusive. From what I have read some children have all of them and schools are more often to resist the 504.
As far as the glucagon and the nurse's reaction, I hope it is in her plan that at least one person is always in the building that knows how to deliver glucagon. And that if the nurse is not there that 911 is called immediately if your daughter is having a seizure or is unconscious. (I would hope common sense would dictate calling 911 vs. "well I called the nurse, so now I'll just sit here and watch this child convulse." kind of attitude.)
Good luck. Do not agree to anything that you are not comfortable with.
Currently with the IEP she has a 1-1 and he's well trained. The fear is they're trying to cut positions and that's one they're looking to cut. Plus, with an IEP there's funding as with the 504 there isn't and I don't know how they determine if it's an IEP or 504. I thought an IEP included a 504 sort of? They think her lisp and her sensory issues are not enough where she's a smart little girl. My fears lie in the fact that with her lows, she's not learning after, and even though she's not pulled to be taught in special ed, her 1-1 can test her individually if she can't have the test at the same time the class does due to low bg's. In addition, like just now, she dropped to 34 at recess and without her 1-1 noticing that something didn't look alright in her face, it wouldn't have been caught, as the other person that watches her for lunch and takes her out for recess had no idea she was low. My child doesn't know if she's low. I don't know if that would qualify her for and IEP itself or not. ?? It's just really scary and it shouldn't be this way for families. At least in my opinion, we need to feel our kids will be safe at school, and currently, my way of knowing she's in good hands is having her 1-1 and with a 504 we might lose that and I don't know what I should do.
I'm a speech pathologist who works with kids w/ hearing loss, so no experience with diabetes and IEP's specifically. (504's etc didn't exist when I was in school....). But, for my kids, if they need a special PERSON (such as a one-on-one aid, audiologist, etc) they can't get it on a 504, only an IEP. The 504 is for accommodations that the regular teachers/school can provide w/o specialized help of a person (e.g., letting the child check BG's as needed, letting the child w/ hearing loss sit in front, etc).
I find that for kids who don't fit the norm (like yours w/ D), unfortunately, the parents end up having to pay for an education advocate or attorney to join them at the eligibility meeting. If I were you, I'd go in with a list of what you feel is absolutely necessary for your child (e.g., glucogan right away) and what you feel is negotiable, but don't tell them what you'll negotiate on right away, lol (e.g., having a trained teacher instead of a nurse administer the glucagon). Then, make sure whatever document they offer you meets all the necessaries.
You also have the right to bring any person you want to invite to an eligibility meeting. So, for example, you could bring a diabetes educator who you could pay to come, etc. You know, someone who could offer medical expertise that the nurse lacks...
I've heard ADA and JDRF will both provide education resources. I'd check them out! Good luck -- I hope it works out.
Thank you for giving me something to think about, Sarah. I hope the school would realize how essential having my child's 1-1 is given the situation that happened today and her 34 blood sugar that no one noticed until her 1-1 aide returned from lunch. I was under the impression that a 504 is unfunded and can't guarantee a 1-1 and that an IEP is funded and with her IEP in OHI with an IHP is what she has, but they think she doesn't qualify anymore. Her disease never goes away. Low blood sugars mean she's not learning anything new for the remainder of the day, and it's going to catch up with her, gaps in learning, etc..
Everyone has given great advice on dealing with the schools. The children with diabetes website has a standard list of 504 plans if that will help you put your list together. http://www.childrenwithdiabetes.com/504/
I don't buy that anyone is a brittle diabetic. Diabetes is about matching the insulin to the food eaten and blood sugar levels. It's not a perfect science, but frequent severe lows mean that the insulin dose or timing isn't accurate. This isn't your fault or your daughter's fault. Your doctor and diabetes educator should be making adjustments. Have they suggested using an insulin pump so your daughter can have more flexiblity? Insulin pumps also help hypo unawareness.
Your daughter probably won't be able to sense low blood sugars as long as she's having so many. When a diabetic first has lows their body goes into emergency mode and releases adreneline and other hormones that cause low blood sugar symptoms. But after too many lows, the body sees them as normal and doesn't go into red alert. The only way to correct that is to have no lows for several weeks or months.
Also, giving glucagon shouldn't be a common thing. It should only be used if the diabetic is passed out and isn't coherent enough to swallow. If your daughter is conscious, juice or a squeeze tube of cake frosting might be a better option. Glucagon makes a person feel extremely ill and takes a long time to recover. It usually causes bad rebound highs. I've been diabetic over 30 years and was given glucagon only twice in my life, both times by paramedics, during times when my diabetes was badly out of control, like during college when I worked 2 full-time jobs and rarely tested.
Work with your doctor to make sure your daughter has an accurate insulin to carb ratio and correction factor. Insulin pumps are great tools because they allow a person to tailor his/her base rate of insulin, then just take extra to correct high blood sugars and cover food. If your daughter is taking shots with long acting insulin (like Lantus) then it sounds like the timing may need to be changed so she's not crashing mid-day.
A couple books you may find helpful are "Think Like a Pancreas" by Gary Scheiner and "Using Insulin" by John Walsh. Good luck getting your daughter what she needs at school.
I was under the impression that a 504 is unfunded and can't guarantee a 1-1 and that an IEP is funded and with her IEP in OHI with an IHP is what she has, but they think she doesn't qualify anymore.
Once something is written on a 504, it's a legal document. So, they need to find a way to do it, funding or not. But, again, the 504 is limited in its scope...
Low blood sugars mean she's not learning anything new for the remainder of the day, and it's going to catch up with her, gaps in learning, etc..
Luckily, once they treat her low, it shouldn't affect her for the rest of the day. I find that I'm more "with it" in 15-20 min after a "bad" low. Sometimes, if I overtreat and it rebounds to a high, I'll feel ill later. But, that shouldn't happen everytime and I can still function. My concern with kids with T1 at school is when they are pulled out of class sooo often that all those 5 minutes here and 15 minutes there add up to missing important learning, if that makes sense. There more she can quickly be treated in the classroom, the better IMO...
Have you asked the endo about a CGM? I also have hypo unawareness, so it's wonderful. I have mine to buzz at 80 (but, they usually say 90 for a child), so I'll eat about 10 grams just to make sure it doesn't go into a low.
jennagrant, my child has been like this no matter what has been tried, lantus, pump with novolog only, it's a roller coaster. One good day, a crazy low day, a crazy high day, and without making a change it does this on it's own. It's good carb counting, it doesn't seem to matter. Even with the pump and the cgm set for 100 it doesn't catch her lows always.. I mean it's a help, but not enough. Especially when she has no idea she's going low or what that should feel like regardless of how much we try to teach her this is how your body feels when it's low. Her academic scores have gone down some, although she's performing ok, so maybe not enough for an IEP, idk? She is currently with an IEP, OHI with and IHP and a 1-1 since only a building nurse 2x week.. who isn't trained. The nurse would be willing to drive 15+ min to administer the insulin if she's in seizure and it's happened before. Honestly, it seems that EVERYTHING affects my child, and more severely than others. No matter what they say should happen at a particular age, it's like my child is exempt from the "norms". I think they're as baffled as I am which is why I have such concern. It would be so different if she felt her lows, (she used to a little) and she has had lows which the doctors have tried to correct but like randomly she'll just go low again. Or she'll skyrocket. So this week, she's done all of that at the same time she's had her low, severe low, skyrocketed high, all within a day or two. It's possible that spring, growing, maybe she's coming down with something, but honestly I would say I'd be extremely lucky to have a single night of sleep because it's so erratic. Thoughts??
Sarah, I might have answered some of your thoughts in jenna's above, like she has the cgm/pump alarms for 100 but she'll drop so fast it doesn't even alarm until after the fact sometimes. She was convulsing at 40 and the alarm went off after she'd been treated. :( She wasn't convulsing at 34, and no alarm that time either because the sensor was not ready for the meter bg now until after. Even when it alarms at 240 it could be with an arrow up and the same deal and she'd be well over 300, like today, same time as the 34 a couple days ago ( and no pattern so no changes made with the pump).. what's up with this?? I don't know, but that is why I'm so concerned about her care at school.. I would love for it to be less crazy, but without patterns the doctors won't make daily changes.. it's really hard.
I heard at a conference recently that insulin absorption really differs between people, and within the individual. Seems like that would relate here...
Sorry you all are going through this. ): Luckily, CGM technology is getting better and better, so maybe in a few years ... ?
As an adult person with T1D who has experience with IEP, and 504 I would suggest sticking with the IEP. I had to have an IEP for another health issue, but I remember there was a semester that I was on the 504 plan and it was the worst, most difficult semester I ever had. Also, when your child becomes college bound there are scholarships they can qualify for with the IEP that they won't with the 504. I hope this helps. :)
Sarah, Do you happen to remember what conference this was or if there was a supporting document? I would love to have a copy to take with me to my school meeting this week. For instance, tonight, I've given her 40 carbs with no insulin over the past 4 hours, as she's sleeping.. and she was fine last night. It''s like this all the time. No changes, one day one thing, the next something else completely. Her CGM alarmed for 93 tonight, I tested, she was 61. :(
acousticmelo, thanks for the tip, should she stay with an IEP, it's nice to know there's help later on, financially for college.