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?
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!
In Partnership, 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.
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.
Why?
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).
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.
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.
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.
- etc.
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
A school cannot refuse to provide needed care. Nor can it pass along the expense of emergency care because it is failing to provide care to your child. Nor can it administer care that is inconsistent with your child's written treating physician's orders; that would be blanket policy, which is prohibited.
If your child's school is failing to deliver written physician's orders, you can:
1. File a written complaint. Document the date/time/persons involved in a letter sent to the District's Director of Student Services, or whomever is the designated person overseeing 504 Plans in your school district. (Emails don't get taken as seriously as letters.)
2. Engage your medical team to help you. Treating physicians and their teams can be of help by contacting your school principal to explain your child's needs.
3. If need be, work up the chain of command at the district level. If that fails to yield positive outcomes, then you may need to file a grievance with the U.S. Dept of Ed's Office for Civil Rights (OCR).
I actually sent a cert letter to the Superintendent and all his staff including the Attorney of record for the school district. Their response:
"In the case of acute hypoglycemia, Sophia's response to lower than standard dose of carbohydrates as set by our policy, even with Physician's orders and support, cannot be predicted. Specifically, treatment with just 4 grams of carbohydrates does not insure that her blood sugar levels will promptly return to normal levels and be sustained throughout the remainder of the day. Our school staff does not have the capacity or qualifications to identify and remedy the cause of Sophia's drop in blood glucose or provide the close, continuous blood glucose monitoring this situation requires. In the event you are required to pick Sophia up so that you can more closely monitor her condition, you may certainly return Her the following day at your discretion."
They just don't care and do not want to be bothered as she is the only child in that school with T1. Thanks for the info - I will look into filing a complaint.
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!
If you are able to document that their protocol has a negative impact on your daughter's bg levels, i.e. causing her bg's to become too elevated, that would be a way to demonstrate that their protocol is inappropriate for your child.
Again, engage your medical team. And don't give up!
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!
How do we parents advocate for our children in a system that doen't work for them or in their favor. I advocate for 2 children with health issues, one is diabetic and the other a chronic severe asthmatic with middle lobe syndrome. I live in Miami, Fl and the school sytem here is really bad, you have principals who question parenting skills and counselors that instead of guiding their students they degrade them and bring their self esteem down. The lack of training and teaching of diabetes is big and brings fear to parents like myself.
I wished there was more help for teens with type 1 diabetes here in Miami, Fl. The public school system isn't trained or educated enough about this desease and children are denied and discriminated. I've been having issues with my daughter's high school since January 2012, it's gotten so bad that I have decided for my daughter to finish HS on Virtual School, where I can monitor and check her sugars properly. I understand that she's a teen and needs to take responsibility for doing certain things herself, but unfortunately she is also ADD and Mood Disorder, so it's conflictive to get her to do what she needs to on her own. I wish there was more for us parents, so we can help our kids more.
