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Back to School For Parents
On Wednesday, August 3, 2005, Crystal Jackson of the ADA joined parents for a "back to school" chat.
Moderator (server) Wed Aug 03 08:00:04 PM EDT 2005
Our Back to School chat with Crystal Jackson from the ADA starts at 9pm Eastern.
is there a room max?
Our Back to School chat with Crystal Jackson from the ADA starts in 10 min in the 'Back to School' room.
hi all
Hi stace--long time no see
hello everyone
slpmom sure thing
hi every one
Good evening everyone! How's your summers going? Ready for bac-to-school?
Good Evening Ms. Jackson! Thank you for doing this chat
Can't wait to see school start - to see how many times the nurse complains about orders written by doc.
Sure. Glad you could join us. I'm anxious to hear about concerns this school year.
What are your nurse's specific complaints about doc's orders?
Hello Crystal what is this new rule they have for diabeic kids in school?
Good evening all.
Danielle, I am not sure what you are referring to. Please explain. Are you talking about the recently passed legislation in TX, HI, KY, SC?
Hey Brenda.
in TX
You name it they found a problem w/it.
Evening all!
TX Diabetes Care Act - requires schools to have a minimum number of trained personnel who can provide both routine and emergency care. There's a link from the ADA's website. Check it out. Kids in TX will be well-protected ow.
I was hoping you could discuss 504 specifics (testing, shots, glucagon) in the school site and what modifications the district has to support
Any advice for a mom of a future kindergartener? I have my 504 ready to go, medical plan and a meeting set with the school....anything I am missing?
Re: Doc's orders. Recommend lots of specificity. Also, flexible to enable parents to make diabetes care decisions such as insulin dose adjustments.
Re: 504 - where care is going to occur, who provides care, level of child's ability to provide self-care, who has been trained to provide care. The foudation of a 504.
Thank you Crystal very much. Now I must go good bye all.
what really is the schools responibilty doesn't this vary from state to state?
Lisa, go into meeting in spirit of cooperation. Know the laws. Read info on ADA's and CWD's website. Education is the key.
Tennessee passed a law allowing sugar testing and insulin administration anywhere on campus and the local schools reaction was to be more restrictive then ever last year. Hoping for more this year.
Crystal--say school states won't do glucagon in an emergency and my daughter goes dangerously low. They say they'll call 911. By the time a volunteer fire dept shows up at our school--who knows how long that'll take
Under Section 504, public schools and private schools who receive federal funding must meet our child's medical needs to ensure safety and the ability of our children to participate in all school activities. State nurse practice acts have an impact on who can perform which task.
We do not use sliding scale - they called the doc's office everyday until he finally wrote them one - I was informed by the nurse after the fact. I sense some dislike of my son's doc from them and that could be part of the problem.
Why does this room keep closing?
TN - law is structured in a way that does not require non-medical personnel back-up. It's up to each school district to decide. TAlk to your school board members to impact policy.
Doesn't appear to be closing from here. Who is your host IP?
True--but when we have 1 nurse for 7 schools ---how do we help get things to happen without threatening a lawsuit
Unfortunately, personality concerns can be an obstacle, but it should not and cannot limit appropriate care.
Netscape and I am on MAC.
Hi
In order to provide a safe environment for your child, schools must have someone available on-site to provide both routine and emergency care - including glucagon. Calling 911 is not an acceptable back-up plan.
SugarCube ... for Mac, we have only tested using Safari
hey
Unfotunately, most schools do not have a f/t nurse or any nurse all. This does not relieve the school district from its obligation to provide care. ADA takes the position that non-medical school staff members should and can be trained to supplement care provided by a school nurse.
Tasha, this is a Back to School chat. Do you have diabetes?
Hello...
Crystal, you know that and I know that, but how do we convince school corps of it, short of legal action?
Has everyone at this point met with appropriate school personnel to review your child's health care plan or physician's order and to begin work on a 504 plan? Now is the time if you haven't already done so.
who would/should provide the instructions to other personal than a nurse?
Do you have to have an LPN for a school aged child who cannot give themselves insulin or test blood sugar or could the health assistant do this? I am referring to the elementary school level of children.
Judith, education is the key. Educate about school legal responsibilities, educate about diabetes, help your school to understand that good diabetes care benefits both the student and the school.
Cryastla---so a non-medical person who agrees , can administer glucagon, injections if agreed upon without risk of liability ? Liability is the token word here... it is a great idea to say the school district has the obligation..reality is different
In Canada we have no school nurses..but Amber's teacher, principal, childcare worker and the school childcare worker supervisor are all trained in recognizing signs, supervising testing, treating lows/highs, and also the use of glucagon.
Our district has 3 nurses (down from 4) for 11,000 kids in 12 schools. I will do some inservice on diabetes care for those nurses, but the "policy" is very definite: No one can give injections at school. (Oh wait, they'll give EpiPens in case of anaphylaxis)
Marlene, have you had any problems at school with this system?
I feel that I can now freely advocate, without fear of any reprisals, since (after 33 years!) all my kids are out of public schools.
same in our district--they'll use an epipen, not a syringe
School nurse should coordinate care, help to train personnel, monitor those who have been trained, etc.It's a good idea and actually necessary that the parent sit down with appropriate personnel to talk about your individual child's needs because our children are so different from one another in their symptoms, regimens and abilities.
No injections in Canada also...except for Glucagon as it is considered First Aid not medication.
My school district says that a doctor's order that states my child needs to keep her meter with her is not clear so they cannot honor it.
Many states permit non-medical personnel to provide diabetes care and also have immunity provisions on the books. It is not unreasonable for a school to require a consent and liability waiver.
Marlene, it sound like you have a good, working system of back-up lay personnel.
Judith, what state are you from? What is the source/authority/policy of no injections? I recommend that parents work to change it.
One big challenge is that state nurse practice acts have not kept up with the pace of diabetes care. Laws are archiac and not practical.
No problem with the system....however I also daily check in with the teacher and childcare worker via a communication book, keep the "team" advised of insulin changes, illness,etc and also have a "team" meeting every three months to review Amber's file and to work on goals to help Amber be a self advocate(hope that makes sense)
It is a good idea to have your child's health care provider include in the order that your child must have access to insulin, equipment, and supplies - as maturity and age appropriate of course.
I'm in Indiana. The state teachers' contracts say they do not have to do any medical stuff. There are no nurses in the schools. Medications such at Ritalin!, antidepressants, antibiotics, etc is handed out by school secretaries.
Marlene, sounds wonderful. Just to clarify - there are folks available who have been trained to administer glucagon?
I was able, when my son was in 4th grade, to get his previous teacher (2nd grade) to agree to give cake frosting gel if he got low. We did have to sign a waiver of liability; her husband was legal counsel for the schools.
hi
Judith - teachers cannot be required to provide medical services in any state to the best of my knowledge. It cannot be a condition of employment. However, in states like VA where I live we have a very comprehensive legislatively mandated system that requires a minimum number of personnel for each school, but these personnel must be volunteers.
Yes there are 4 who have had hands on training...I just save up expired glucagons.
With the ANA saying that all diabetes care should be done by nurses, and AFT saying teachers will not do diabetes care, our kids are left up a creek!
What do you think about nursing home hepatitis outbreaks caused by infection control breaks by health care personnel? The CDC now recommends that blood glucose meters NOT be centrally stored in long term care facilities. They should be stored with the resident when possible. Any thoughts about how that applies to schools.
Important thing to remember is to develop a written agreement like a 504 plan so that everyone's responsibilities are clear and it is absolutely clear as to what services will be provided to meet your child's needs. Even if everything is going well, still write a plan to prevent future misunderstandings.
Not familiar with this CDC recommendation, but I will look into it as I think it may very well benefit our kids' ability to keep meters with them.
Crystal--I think another important point to mention is that a 504 plan is different from an IEP. It is an agreed upon contract in that place and time and not automatically transferred from one year to the next or between another school in the same year.
allys school has been pretty good with everything
Can parents write their own 504 Plan? Our school system has 504 Plan Forms, but they don't cover much.
ANA and AFT have taken positions that are oppositional to ADA. Have not heard of any instances thus far where diabetes care has been impacted because of these positions, but it is very unfortunate that this groups have responded in this fashion.
Recommend that you come into a meeting very prepared. Have provisions written out. Don't get caught up on whose form is going to be used. The important thing is to make sure that everything has been included - including by reference is fine.
is it enough to have a school plan or do you need a 504 plan too?
I'd also suggest you decide ahead of time which things might be negotiable, and which are not. You may have to do a bit of give and take....
Differences between 504 and IEP. First a 504 plan is developed under a federal anti-discrimination law known as Section 504 and it need not be shown that diabetes impacts academic performance. IEPs are developed under IDEA - a special ed law under which some kids with diabetes qualify if it can be demonstrated that diabetes or another disbility adversely impacts learning or academic performance.
Ask for the universe and expect the world.
Great quote, Crystal
Last year, the school told us we did not need a 504, just a school plan and we didn't have any issues. Of course, it could be because Marissa was a high school senior and has had diabetes since a toddler.
Hello
Recommend a written plan - like a 504 - in addition to health care plan/dr's orders. 504 is the implementation tool for your child's health care plan and will address academic accommodations that are needed such as alternate times to take a math exam if your child's bg is out of range.
Definitely look into it. Apparently the hepatitis virus lives a very long time on inanimate surfaces. The spring loaded stickers state in their instructions that they should never be shared. Nurses passed infection even though lancets were changed etc. Nurses and other residents did not get infected, the diabetecs got infected. It is in March 2005 MMWR.
hi tina
I agree that it's better to have a 504 in place and not need it rather than not have one and then deal with problems.....
Important that you have a written plan - no matter what the school chooses to call it. Doesn't relieve school's responsibilities under 504.
We are entering junior high school-- my concerns regarding her 504 plan are pretty specific but ones I can fight ( I'm in the special ed field already). However, we have new kinders coming in that don't do own shots. Parents have to work and can't hang out all day--what do they do?
where do you get this 504 plan?
3-24-03
at age 8
ADA has a sample on its website and CWD has many actual plans. A wealth of information out there. Also, you can call ADA at 1-800-diabetes and we'll send you a school packet containing a sample plan. Pick and choose the provisions that are appropriate for your child.
yeah i noticed they had same number next to name
School must provide trained personnel to administer insulin. Bottom line.
Boy Judith--your good
What other concerns or questions? Any other challenges anticipated?
Again, Crystal.... other than educating them about federal laws, how can that be implemented? What if they continue to refuse? What's the next step? I know "Educate, Litigate, Legislate" .... but what in the short term?
Is everyone aware of states that have passed school diabetes care legislation?
Is there a handy list of those, Crystal?
what states wuold that be?
Do you know anything about filing due process? I tried an OCR complaint last year and they told me to file due process. hopefull things will go better this year.
Unfortunately, change does not occur overnight. Work your way up the chain of command. Talk to your school board members. You'd be surprised at how many folks have a personal connection to diabetes and will understand. If negotiation fails, then consider filing a complaint with U.S. Dept of Education/Office of Civil Rights. That's usually the next step. You could also file a claim in state or federal court.
Nashville TN so far has refused to honor their state law.
Due process. Which state are you in? I would like to talk to you more off-line about your OCR complaint and its directive. Can be reached at CJackson@diabetes.org.
Are class action suits appropriate there, assuming you can gather a group of affected families?
Nashville has blatantly refused? On what basis? TN has been a challenge.
The biggest concern about going the lawsuit route is that your child will have probably graduated before it is resolved.
Hi. I just came on. My problem is Kristen walks home with her 13 y/o sister and she can't carry a meter because they won't allow sharps outside of the nurses office. Is there any law that would allow her to carry her meter/lancets in her backpack?
Right....and/or face problems at school because of the suit.....
Each school district is required to inform you about its due process procedure. You should have received some type of pre-printed form from your school that will explain due process filing procedure. Be alert to filing deadlines.
There are one time use lancing devices that are not a hazard except in the moment of use. BTW does that school allow push pins, compasses, thumb tacks, etc?
Let Kristen carry a safety pin to prick her finger.
Stephanie, there is a CA law that permits kids - with parent and physician consent - to self-treat wherever they happen to be. In order to provide self-care meters and supplies must be in possession of student. There's a link to law on ADA website.
Judith
The basis was that they said they could not interpret the law until they rewrote the state guidelines. The new guidelines came out about two weeks and they did not address much. I think my OCR complaint may have pushed the writing of those guidelines along.
Your child should be allowed to use the lancet and insulin delivery system of choice and not be restricted to single-use lancets (ouch!), insulin pens, etc. Key thing is have it included in doc's order or your child's health care plan and also write it into your 504.
I will check that link! Thank you so much.
Stephanie, Crystal may be referring to
http://www.leginfo.ca.gov/pub/03-04/bill/asm/ab_0901-0950/ab_942_bill_20031009_chaptered.html
TN guidelines have been in the works for a couple of years. I saw an early draft, but not final. Will take a look at these and alert our TN advocacy director about continuing challenges in TN.
Thanks Brenda.
Anybody from TX, HI, KY, SC? These states passed school diabetes care laws in last legislative sessions.
I love the safety pin idea. Have you ever used a safety pin?
Are these the only states that have done that?
BTW Judith, we did use a safety pin once when we were at an airport and packed all her lancets!
She said it hurt
No, just the most recent. Other states include VA, WA, NC, TN, CA, MT, WI.
Also, MA & CT have laws that state that a school cannot prohibit a child (who has parent and doc consent) from self-bgm.
Excellent. From what my child's high school assistant principal has told me so far, the TN schools have doing our children a great diservice by not allowing them self care and treating them like diseases. No respect.
Sounds like you may have an ally in your asst. principal. Would s/he go to bat for kids with diabetes?
Are there other students with diabetes in your school? How do they address their diabetes care at school?
Anyone have any other concerns? Recommend that you become familiar with the info on the ADA's and CWD's websites. Be prepared and know what you need to ask for in order to meet your child's needs. Also, ADA will send you its free school packet if you call 1-800-diabetes.
What plan of action can we that do not have these laws take?
Crystal, you obviously have a very high profile now (and have done GREAT things for kids with diabetes!). Did you ever feel that there were any negative consequences for your child as a result of your advocacy?
Crystal, you are truly a goddess and mother for all of us. You help us pave the way to get what we need for our children. THANK YOU for your strong efforts on everyone's behalf.
I am hopeful things will go better this year. My child was allowed to self treat for the first four years. Then we met our first school nurse and the rest is a long story.
Schools must accommodate under federal laws. Become familiar with this laws.
Amber would like to say hi....she says the best thing about being diabetic at school is she doesn't have to participate in the ethnic food sampling because mommy doesn't know how to figure out how many carbs. She also likes that she is the only one
Devin never ever experienced any negative consequences. Actually, teachers and school administration wanted to provide care. It was school district administration and school district interpretation of VA Drug Control Act that started the problems. We have always been treated with dignity, respect, and fairness.
Good to hear, Crystal.... Our problems started with a particular teacher and principal. Had to go to the ass't superintendent to get any relief.
Ellen, I have been called a lot of things, but never a goddess.
The asst principal told me that my child's new school (high school) has five DB students and that the nurses lines them up and does all their sugars for them. This is TN, one of the states with the law.
Amber is reminding me that it is 7 and her turn on the computer so I had better go. Night everyone...thank-you Crystal for your time tonight.
What you are telling me about TN is making me very concerned. Please, please ask these parents to call ADA. We need to hear from folks in order to identify TN as continuing to be a problematic state. Absolutely critical.
Night Marlene and Amber.
Certainly does not seem appropriate, esp for HS age students, SugarCube. We had good (older nurses) until Dave's senior year. Then 2 of the 4 retired, and only 1 - a new grad - was hired to replace them. The young nurse knows EVERYTHING!
Crystal, thanks for taking the time to chat tonight. This room will remain open until 11pm Eastern, and you're all welcome to stay and chat about school issues.
Time for me to head to bed though.
Crystal, thank you for all you do and your time this evening. Night everyone.
Great info, Crystal! Thanks for all you do.....
Thanks for allowing me to share info Jeff. I can stay on for another 10 or so minutes.
Goodnight all. Thanks Crystal.
Seems such a shame that every family has to fight the same battles..... Should not have to be this way.
Our schools also feel that calling 911 immediately resolves them of any responsibility to deal with medical issues.
Remind everyone to stay informed about school developments and the ADA's Safe at School Campaign.
Crystal, have you been able to apply the US Supreme Court case "Cedar Rapids vs Garrett F" to diabetes care?
Thanks Crystal and good night!
911 is not an acceptable back-up plan. Many EMTs are not even able to start an IV drip. And what happens if rescue vehicle gets stuck in traffic or cannot attend right away?
learned much from this hopefully will never have to face some of it Thanks all.THANKS Crystal.
Exactly..... Many parents/schools have a false sense of security thinking an EMT will administer glucagon. Won't usually happen. They don't carry it and would be very unusual for them to use a pt's medicines.
We are working on a key attorney tool right now utilizing relevant case law, statutes, regulations, and OCR settlement agreements. Stay tuned.
Where will that tool eventually appear?
The other thing I have to say is that many,many schools are doing a fabulous job of providing care. Unfortunately, I usually only hear from situations where it's not working.
Distribution plan is being developed. Check the ADA's website in a few months.
When Dave was in elementary, his (there only on Tuesday afternoons) school nurse herself had type 1, from childhood. However, her knowledge of current treatment was WOEFULLY inadequate.
She was understanding and helpful, however.
Our kids' diabetes is not the school nurses or our Aunt Wilma's. Very different, but then I don't need to tell you guys this!
Again Crystal: thanks so much!
Have a good night everyone. Time to turn in.
good evening all!
anyone around?
This room will close in five minutes. Please move to a new room.
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Last Updated: Saturday August 06, 2005 14:34:25
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