I've joined your group temporarily to share some info I gathered at a UCSF diabetes symposium and kids' camp last weekend. The Diabetes Hands Foundation table was next to the table for an organization called Disability Rights Education and Defense Fund (DREDF), which, as it turns out, represents the American Diabetes Association (ADA). DREDF has been fighting for years to ensure that children with diabetes can receive the care they need, including insulin administration, in California public schools.
Very important work. Have any of you in this group run into problems getting adequate care for your kid in school?
I am in Washington state and it seems like every school district handles diabetes care a little differently. In the district that my child goes to they have designated schools for children with special medical needs. These schools have full time nursing staff and the others do not. They will not administer insulin if your child chooses to go to a school other than the designated one. I understand that this saves money, but my biggest issue is that they picked a sub-par school as the designated school. Our home school has much higher test scores, much better parent involvement, much less free and reduced lunch than the designated school. It makes me sad that my younger child cannot go to the same school that my older child went to just because she has diabetes. I do not feel she is getting as great as an education and she also is not meeting kids that live close to us because she does not go to the neighborhood school. But, my child is getting very good medical care in her school, so I feel like I just have to supplement her education at home. The one other positive side to this is that she has 5-6 other diabetics is her school (including one that is in her class). It is nice that she does not feel alone in her disease and she also has a buddy to walk to the nurses office with.
If there are people out there that are not getting good care in their schools, I apologize for my rant. My issues probably seem small compared to their worries about their childs' care.
There have been reports of "diabetes schools" in WA state (and other states, too).
Generally speaking, such a practice is considered to be inconsistent with the spirit of federal laws.
Because forcing a child to attend a non-neighborhood school is not in the least restrictive manner if the reason is simply because he or she has a diagnosis that requires related aids and healthcare services.
In many instances requiring a child to attend a non-neighborhood school is considered to be a discriminatory practice because the determinant is the disability. Aimee, from what you describe, all children with type 1 diabetes are being refused 1) the ability to attend a neighborhood school, 2)to attend with neighborhood peers and/or siblings, 3) an education that allegedly is inferior to the neighborhood school based on quantifiable (factual) measures.
If it were me in your shoes, I would be filing a complaint against the school or district for discriminatory practices that appear to be based on blanket policy (i.e. all kids with diabetes go to school 'x') and, therefore, fail to meet the individualized needs of my child (both medical and non-medical).
To learn more about the laws in WA state, go to:
ADA's webpage on WA state laws
- Lisa Shenson
When I was first told about the practice I looked into fighting it (my daughter was not yet in Kindergarten at the time). I was told that others had fought it before me and did not win (although I do not know the details of exactly how they fought it). I contacted ADA legal at that time (about 4 years ago) and was told that if I were to find a staff member at the school that was willing to be a PDA for her I could probably fight the district and win.
The school is not forbidding my child to go there, but they are putting the responsibilty on me of finding a Parent Designated Adult that could be at the school with her. I know some of the people at her home school and was told that the staff there is not open to becoming PDA's. The basic attitude of the school is that they do not want to deal with it; send the kids to a different school. While I do not think it is right, I did not want to send my child to a school where they are not wanted. I got the feeling that she would not be welcome. I also felt her medical care would be better with a school with a full time nurse and an assistant (there is always someone at her school that knows her diabetes). I felt that she would need not one, but at least two PDA's at the other school to make sure that one is available when she needed them and the task of finding them and training them was daunting.
It is a horrible feeling to have to choose my daughters' health over her education. I work full time and cannot be with her during the day, nor do I have the means to hire someone to go to school with her.
Over the last three years that my daughter has been at this school, I have thought about taking on the cause for others that are newly diagnosed. I don't know if I would actually switch my daughters school at this point since I think it would be difficult for her at this point socially. I guess I am hoping someone else will take it on and I will back them up!
Its true that we would never want to force anyone to provide care if that person wasn't comfortable in doing so. Yet, it is also my experience that there is almost always at least a few staff members at every school who are willing and eager to be trained in diabetes care. People who choose to work in the school setting do so because they are committed to helping children. So, there is usually a few people willing to be trained. In WA state, there are experts in diabetes care who provide training to school personnel.
I realize its doubly difficult to advocate when you work full-time. Yet if you truly want to secure appropriate care and do so in your neighborhood school, it requires parent advocacy. So, don't give up!
Thanks for sharing info with the group, Emily!
Based on federal laws - chiefly Section 504 of the Rehabilitation Act of 1973 (Section 504), Americans with Disabilities Act (ADA) and Individuals with Disabilities Education Act (IDEA) - schools that are recipients of federal funds are prohibited from discriminating against children with a known "disability". The term "disability" legally means that the condition affects a major life activity such as walking, talking, learning, providing self-care, eating, thinking, etc. As such, type 1 diabetes is largely viewed as meeting that legal definition.
The law requires a school to provide ...
...a free, appropriate public education (aka FAPE)
...equal to non-disabled peers
...with reasonable accommodations
...including related aids and healthcare services
...all of which is to be delivered in the least restrictive manner.
In order for the child to have access to a FAPE:
- it is illegal to require a parent or parent designee to provide care; a parent may choose to do so but cannot be required to do so,be it on a regular basis, field trips, extracurriculars, etc.
- it is illegal for a school or district to implement blanket policies that fail to meet the INDIVIDUALIZED needs of a particular child or that have the affect of preventing the child's needs from being met.
- it is illegal for a school/district to in any way assist or promote discriminatory practices (such as outside vendors providing afterschool programs held on school property)
- financial burden is not a valid defense; schools/districts cannot legitimately cite budget constraints as a reason for failing to meet a child's needs,
- it is the right of a school/district to annually review the child's 504 Plan of accommodations,
- the 504 Team is to be comprised of persons who are deemed knowledgeable about the child; since parents are most knowledgeable, it stands to reason they should be afforded opportunity to participate meaningfully in the development of a 504 Plan,
- there are no rules about the length of a 504 Plan of accommodations
- every school/district is required to have a channel of Due Process to resolve conflicts and disagreements.
Give children with diabetes a voice.
Learn about the laws and your child's rights.
Advocate for your child.
Together, we will make all children with diabetes safe at school!
Lisa Shenson, Diabetes Parent & Advocate
My son was diagnosed in high school at 15 so I can only speak to our high school in Coppell, TX ( a suburb of Dallas). The only requirement was for us to supply them with a Glucogan Kit each year that they kept in an emergency kit by the door. The nursing staff sent communications to each of my sons teachers supplying them with info about his diabetes and what to do in case of emergency. If there ever was an emergency, the would go to his room and administer glucagon and another staff person would call 911 and meet the ambulance since it is a large school. I felt comfortable that they had a plan.
The nurses office supplied each diabetic child with a bin for supplies and another bin for the refrigerator to keep insulin supplies onsite. The first year my son went to the nurse's office daily to check BG and do injections prior to lunch. I think that by this age all of the students could administer their own injections but the nurse's were qualified to do so. The last few years since he is now on a pump, he goes only when low for a snack. He is allowed to check BG anywhere in the school (I thought the blood/AIDS issue might come up) and give his own adjustments with the pump.
He has no special accomodations except that he will be allowed extra time if a pump problem or emergency low delays him taking a test or finishing an assignment. He had the same accomodation for the SAT Test - only extra time if a delay occurred.
When he was in a Clinical Trial and missed 22 days of school, it became a truancy issue and he was required by the State of Texas and the school district to makeup instructional time - I thought this unfair. His Sports Medicine teacher, always a great advocate for him, stepped in and fought to let him use his sports trainer hours since the athletes who miss class for events are not required to makeup their class time because competing is considered "educational". Most of his teachers were fine with him missing class. He had his work done or made up in a reasonable time and still made decnt grades. He is now a senior and graduates in a few months on schedule. Now we have to start navigating the disabilities dept at College.
I just started the 504 process with our local elementary school. The school nurse there is an "old hand" when it comes to managing diabetes, since a number of T1 kids have gone through that school and several are there right now. I'm still a little nervous about it though. Eric starts kindergarten this fall and I am more than a little uptight as to whether they will monitor him the way I want them to.
Most schools will not initiate the 504 Plan process until the school year has begun. Since your child is an incoming Kindergarten student, that means July 1st (assuming your school is a 9 month school year running from Aug/Sept-May/June).
Every child will require written treating physician's orders; these should be detailed instructions about the daily medical care required by your child. It should include instructions for bg checks, admin of insulin & glucagon, ketone checks (if desired), carb counting needs, treatment of highs and lows, etc. Be sure to include specific timeframes for delivery of care, and both predicted and unpredicted circumstances that would require care.
Once you have written physician's orders, you can then develop a Diabetes Medical Management Plan (DMMP) and a proposed 504 Plan.
The DMMP provides instructions on daily medical care.
Your proposed 504 Plan should articulate the accommodations related to the diagnosis. Examples of accommodations might include such things as:
- there will be at least 2-3 staff members trained in all aspects of diabetes care, including admin of insulin, and at least one person will be present on campus at all times.
- student will have immediate access to water and bathroom.
- student will be afforded additional time to complete school work if s/he is negatively affected by diabetes.
- school will provide carb counts for all food sold by the school
- all accommodations will be implemented for all school sponsored activities, including field trips, extracurricular activities and afterschool care programs.
To view an excellent sample 504 Plan and DMMP Plan from which to create plans tailed to your child's individualized needs, go to: ADA's Sample 504 Plan & DMMP Plan
My school is a little different. They've worked pretty closely with Eric's endocrinologist (his practice is the primary source of pediatric endocrinology care in the state, so they don't have much choice) for a number of years and he has the school nurse thoroughly into his way of thinking — which is, start early, communicate often. I've already met with the school nurse because she happened to be there when I came in to register him and make sure that the school took note of the need for a 504 Plan. One good thing about schools in a small town: everyone knows everyone, so she already had it in her head that Eric would be coming this year. We'll get into the nitty-gritty details in June or thereabouts, but they're already prepared mentally for my son's needs. I'm probably more uptight about it than is strictly necessary!
I felt the same way about starting early. Although we did not fill out the 504 paperwork until August I was already communicating with the nursing staff the year prior to when my daughter started Kindergarten. It was a good thing, because she was the first with a pump at that school so the nurses went through pump training before the school year started. It is a little scary when they start school. My daughter was 3.5 years when diagnosed so I had almost 2 years to imagine how scary school may be. It turns out that her school has been great and I had no reason to worry.
I am in Reno, Nevada and have had nothing but trouble with the district here. My 7 year old daughter has managed her Type 1 through the Honeymoon period on a Shot of Lantus and has required no Fast Acting during the day. The school district has refused to comply with Doctors orders of 1 DEX 4 tab in the event her blood sugar is at 75 or less. They say their protocol is 15 grams and that Doctors orders cannot overide their set protocol. So, in the event that her BG IS 75 OR LESS one of her parents will be contacted to pick her up and remove her from school property and if not done in a timely manner they will call a ambulance and we will have to bear the expense of the ambulance. They refuse to acknowledge that she is not on fast acting insulin and needs to be treated differently - a 15 gram juice box will send her BG into orbit - it's all sugar.
I am waiting for the Honeymoon period to end but in the interim if they call for me to pick her up again after their response to my letter - I guess I will hire an Attorney and go after them full steam ahead.
Anyone run into this situation?
So sorry that you are having these issues. It sounds like the school is being completely unreasonable. Our school nurse will not only treat for low blood sugar but they also allow the parents to decide what that specific treatment will be (for blood sugars below 60 we give more juice than those that are between 60 and 70). Our doctors office purposely writes the plans so that the parent has the say in treatment. They have never required me to pick her up due to a low blood sugar. They will call me to give me the information. There has only been a couple times I have picked her up due to low blood sugars and it was because they were more severe and I chose to. I could tell that the nurse felt better having me come, but there has never been the kind of attitude you are experiencing. I have always felt like we worked together as a team. I can;t imagine how much school my daughter would miss if I had to pick her up every time her blood sugars were out of the normal range.
I wish you the best of luck; it doesn't sound like the school district is trying to think of what is best for the child.