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ADA Moderator : Welcome to ADA Live!
Today our guest is Crystal Jackson, ADA's Manager of Legal Advocacy with a focus on school discrimination issues. She will be happy to answer your questions regarding diabetes school discrimination and advocacy issues.
Thanks for being here today Crystal. With school just starting up, I'm sure it's a very busy time for you. Lots of questions coming in so let's get started.
Crystal Jackson: Thanks Bob, it's great to be here.
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Silver Spring, MD: Our school health policy will not allow the glucagon injection to be administered intramuscularly by a non-RN even in an emergency, only via the slower subcutaneous route. This rule reflects the MD State Nursing Code for legal nursing practices. However, isn't it true that in a medical emergency, anyone is allowed to administer aid in good faith without fear of prosecution for violating such a rule, if the purpose is to save a life or prevent serious brain damage? The school district refuses to direct persons to administer the injection into the muscle.
Crystal Jackson: It is up to your child's physician to determine whether glucagon be administered IM or SC. Please be aware that the package insert from Lilly directs "....by subcutaneous, intramuscular, or intravenous injection."
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Silver Spring Maryland: My son is a senior in High School. We are looking into colleges. When should we disclose my son's diabetes and what should we look for and ask for (especially if he's thinking of living on campus). thanks
Crystal Jackson: It is important to remember that your son is a college student first and his focus should be to transitioning to college - not as a person with diabetes, but as a student ready to take on new studies, new friends, new social life, etc. It is important to learn what health services are available on and off campus and also where to go if your son runs out of supplies. It is important to stay connected with your child - but ask about classes, cafeteria food, social life before you ask about his diabetes. With respect to whether or not you should disclose diabetes and what you should ask for, it is probably a good idea to let your son's RA, roommate, health clinic know about his diabetes and perhaps to store extra hypo supplies with folks with whom he will interact. Section 504 protections do extend to the post-secondary level, but - unlike the public school setting - there's no requirement for the school to identify students with disabilities. If you feel your son will need accommodations put in place, contact the campus disability office to work through needed accommodations. Perhaps you want to make sure that he or she is able to check blood glucose levels in the classroom or able to take an exam at an alternate time when blood sugars are out of range. Just remember - it is important for your child (who really is no longer a child) to seek real life solutions and to know what resources are available to help resolve diabetes challenges and concerns.
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shrewsbury, ma: My son is 8 and started the 3rd grade this year. We have a 504 plan since 1st grade and update annually. This year the school changed the lunch time for the 3rd grade to 1:10 PM, We found out on the first day of school. needless to say we had a hard time managing his diabetes and on the second day just before 11:00 AM snack he was 44. Two weeks before school started I mirror the school day schedule however I used the times based on last years 3rd grade. How much of a stink should we make about the lack of communication and the risk it put my son in. Thanks
Crystal Jackson: Ideally, it would work best if your school was willing to move your son's lunch to an earlier time. However, since it sounds like this is the lunch for the entire 3rd grade, this is probably not a realistic or reasonable solution. Recommend that you consult with your child's health care provider to ascertain possible adjustments to carb intake schedule and amount and changes to insulin regimen.
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Frederick, Oklahoma: Hello Crystal, It seems like there are so many parents having trouble with the people in the school system, whether it be a principal, teacher, nurse or whom ever. I am no expert by all means but have been T1 15 years now and really want to help!! So my question is... is there anything I can do??? I am a stay at home mom and diabetes is a huge part of my life. I have seen and done a lot when it comes to diabetes. I also will be counselor at a diabetes camp next year. If there is anything I can do to nicely wake some people up in the school systems that have no clue about diabetic children, please let me know. Thanks, Lesliem T1 15 years Daughter Gwen 3, dx T1 August '05
Crystal Jackson: How wonderful that you want to enhance awareness of issues impacting students with diabetes!:) Please consider registering on our website as a Safe at School advocate so that we may provide you with updates about current federal and state school advocacy concerns and so you can take action on specific issues. In addition, I recommend that you contact your local ADA office and tell them you are interested in school advocacy issues and educating the educators about appropriate diabetes care. Thanks so much for your interest and commitment to children with diabetes. You can find your local ADA office by going to the diabetes.org home page and putting your zip code in the box.
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Vienna, Ohio: What can we do to convince schools to supply Carb counts for lunch foods? Is there any program we can use for this?
Crystal Jackson: http://www.fns.usda.gov/cnd/Guidance/special_dietary_needs.pdf
I recommend referring your school to the above resource. Also, stress how providing nutritional information on school breakfast and lunch menus enable all students to make healthy food choices.
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Jensen Beach, Florida: Hi, My name is Margaret, mother of a now 12 year old son with typeI diabetes. For 5 years now we have been terrorized and tortured by the local school district because of retaliation. They conceded to OCR for 1 little act , I appealed and I won an appeal with the Florida Statewide Advocacy Council in July 2005. Yet, I am ignored and my son's education has been denied! I would like to know if filing with DOJ is the right step in my effort to stop the practices taken by the local school district. We have made some great strides recently, with clinics being upgraded, personnel being trained and testing insinde the classroom, but we have a long way to go. It certainly is difficult without support.
Crystal Jackson:
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Burlington, Vermont: I would like to advocate for policies, professional development, and laws to help students with Diabetes and their parents with school issues. Can you point me toward model policies and laws and places for professional development so that I can pass that information on to my school district and representatives? I am especially interested in ways to educate school personnel about 504 procedures related to Diabetes. Thanks!
Crystal Jackson: Some resources you may want to consider: www.diabetes.org/schooldiscrimination (in particular you should check out the NDEP school guide, state diabetes care guidelines, and a wealth of other information). www.diabetes.org/schooltraining www.childrenwithdiabetes.com www.wrightslaw.com Also, please be sure to register as a diabetes advocate at http://advocacy.diabetes.org. By registering you will receive information and action alerts on state and federal legislative and policy developments that affect people with diabetes.
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Lutherville, MD: I am in MD also and the school district willnot allow anyone but a nurse to inject anything at all - they are saying that if the nurse isn't present that they will call 911 and while awaiting paramedics cake gel will be rubbed in the cheeks in place of a glucagon injection. My doctor seems to think this is a suitable substitution in the case the nurse is not available. What do you think?
Crystal Jackson: If your school district is taking the position that only a school nurse may provide care, then your school needs to provide a school nurse at all times - during the school day, on field trips, and during extracurricular activities. Although physician's orders for every child will be different, it is the consensus of the diabetes health care professional community that glucagon is the appropriate treatment for severe hypoglycemia ( i.e. LOC, seizures, inability to swallow). Work with your child's health care team to educate your school district about best school diabetes care practices and how your child's needs should be met.
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Rosemount, MN: Any ideas on how to get a child qualified for an IEP vs 504 under other health conditions? (my son also has ADD)
Crystal Jackson: Contact your school's IDEA/504 eligibility coordinator and ask that the process be initiated. The coordinator should convene a team to study whether your child's diabetes and/or other disability falls under IDEA or 504. The key element in qualifying for services under IDEA is to show that your child's diabetes and/or other disability (or OHI) adversely impacts academic progression and learning.
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Brighton, MI : What happens if the school insists only one person needs to be trained in the care and monitoring of the student...and says if that person is not there that day, they will send the child home.
Crystal Jackson: In order to provide appropriate services under 504 or other applicable federal and state laws and also to ensure a medically safe environment for students with diabetes, a trained staff member should be available at all times (during the school day, during extracurricular activities and field trips) to provide both routine and emergency care. Even the most independent student will need help in the event of a hypoglycemic emergency. Every school needs to have a back-up plan in the event that the school nurse or other trained adult is not available.
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Mount Holly, NC: Our 5-year-old daughter goes to a private school that does not receive federal funding. I understand that a 504 plan would not be applicable, but what about the Americans with Disabilites Act in general? What kinds of rights does she have in a private school setting?
Crystal Jackson: Is your child's school operated by a religious entity? If so, then protection under federal laws is not provided. If it is not operated by a religious entity, then ADA is applicable, but services it is required to provide are not always equal to services under 504. For more information, go to www.diabetes.org/schooldiscrimination
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Rockville, MD: Could you discuss how to explain to school personnel how diabetes is a physical impairment which substantially limits one or more major life activities as required to be eligible for a 504 plan? Learning is mentioned as one of the examples of activities that may be impaired along with things like walking, seeing, hearing, etc. Our school had told us that learning HAS to be impaired in order to obtain a 504.
Crystal Jackson:
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Roseville, Minnesota: Several people I know have been told by the school district that they have no responsibility to administer insulin during the school day and the parent must come in person to do it if needed. It seems like this is a gray area in the law--is it? What can parents do if this happens to them?
Crystal Jackson: Assuming you are referring to public school, schools are indeed required to provide a school nurse or other trained personnel to administer insulin. Parent should not be required to come in during the school day to administer insulin. What is the basis for the school's refusal to administer insulin? Further, Minnesota law permits delegation so if a school nurse is not available at all times, then administration should be delegated to another school staff member with the school nurse providing ongoing training and supervision of this staff member.
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Rosmount, MN: If there is a 10 absense rule for schools before 'flunking' a class, can they include absenses related to D in those 10? Do they have to make up gym activities if missing gym for an endo appt? If his sugars are out of range at test taking times (70-270) how long do you think they need in order to be at optimal mind for taking school tests? Do you think 70-270 is a decent range to have for this purpose>? What do you know about memory, spatial and recall being affected from many severe lows during toddlerhood? Is this a permanent memory problem? How can you tell the difference between this and ADD? or can't you? What assurances can we have for our kids in after school sports? Do they have to provide someone for helping treat a low, and even help test blood sugars for the child if they are unable to do so? Thank you for your info Crystal!
Crystal Jackson: These issues can and should be addressed in a student's 504 plan. Student should not be penalized for diabetes related absences (such as doctors appointments), should be permitted to take exams at alternate times if blood glucose levels are out of target range, and a trained staff member (perhaps your school's athletic director or team coach) should be available to provide needed care at all after school sports.
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Vienna, Ohio: My question has to due with in class testing, How can we get schools to see this is very Important? I also wish there was a place to look up laws on these things..
Crystal Jackson: The diabetes health care professional community strongly supports classroom bgm as the safest model of care for students who are able to self-monitor and self-treat. It is important to find out and understand your school's objections to classroom bgm. Is it fear of bloodborne pathogens, feel of injury from the lancets, what is your school's concern? Use ADA's resources and also NDEP's school guide to help to educate your school about how classroom bgm for many students is the safest and preferred best practice of care.
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Montgomery County, PA: From a legislative advocacy perspective are there some states where laws are more protective of diabetic students? Assuming there are is there a process of advocacy that can bring those best practices to other states and how do we as parents and voters make that happen? Particularly is there a way to bring the protections of federal laws like 504 into private and church schools through state board of education licensing?
Crystal Jackson: Here is a list of states that have passed specific legislation re: school diabetes care. Just because your state isn't listed, doesn't mean your state or school district is not required to provide care - only that these are states where ADA has identified significant school challenges and legal barriers to appropriate care and has worked to effectuate change legislatively.
http://www.diabetes.org/advocacy-and-legalresources/discrimination/school/legislation.jsp
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Montgomery County, PA: These are reader?s digest versions of issues that have come up on the board: Can a public school refuse to allow a child wear a pump or require the pump to carry an rx label with dosing instructions? Can a public school require, by grading, field trips, or similar activities and refuse to allow a diabetic child to participate by not providing supervision of the medical need or by insisting on practices such as pump use or insulin dosing other than those instructed by the child physician? Is it an acceptable practice for a physician to put the responsibility of insulin dosing on parents and is so is the school nurse expected to dose insulin at the levels instructed by the parent or can the nurse dose insulin independently?
Crystal Jackson: 1. What is the school's basis for refusing to allow a child to wear an insulin pump? Need more information to fully answer this question. 2. Schools are required to provide trained adults to accompany students on field trips and cannot refuse to allow a child to participate on the basis of not willing to meet health care needs in accordance with physician's order. 3. Insulin dosages are determined by physician's orders which usually permit parent to instruct school nurse to adjust insulin dosages.
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Vienna, Ohio: What can we do when a school will not let the child carry her diabetes supplies in school, they are kept in the office.. My Concern is more for Middle and HS where the schools are bigger and the child is all over that school the office could be 3 floors away.. How do we get them to see a paper cut is as much blood as testing .
Crystal Jackson: You need to find out the reasons behind the school's objections to your carrying her supplies and work with your school to educate about the safety of carrying supplies. Enlist the help of your child's health care provider who should be willing to write an order or letter stating that your child's medical safety and meeting of her diabetes needs can best be accomplished by keeping diabetes supplies accessible at all times. If your child is able to self-check and self-treat, then certainly she should be able to keep her meter and other supplies with her at all times. You should also remind your school that nosebleeds, skinned knees and paper cuts result in a lot more uncontrolled blood loss than the minute drop of blood produced by a fingerstick. How does your school handle other blood producing incidents?
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Houston, Texas: I've noticed that there seems to be a regional difference in how schools are handling 504 plans. Here in Texas, the schools seem to think that State Law 984 is all my daughter needs in the way of modifications. I was told that she was turned down according to Region 3 training guidelines. They based her need on the fact that she is keeping up with the average child without modifications. They also argued that because her insulin therapy was succesful now that there was no need for modifications.
Crystal Jackson: Federal law prohibits discrimination against persons with disabilities - bottom line. If your school district has taken this position - that is, that your daughter isn't 504 eligible because there's no demonstrated academic impact, then they are solely confusing Section 504 with IDEA. In order to qualify under 504, it must be shown that diabetes substantially limits a major life activity. The major life activity need not be learning, but can be performing manual tasks, eating, metabolism, and caring for oneself. Please send me the url of the educator's guide that you speak of and also the sixth circuit decision so that we may determine what is happening here and chart an appropriate course of action. Thanks!
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Montgomery County, PA: Can you outline some general guideline we can follow to protect rights in dealing with school issues so that council can be efficient effective if heaven forbid it be necessary to involve legal council? For example:
-Keeping dated notes of conversations.
-How should we document phone calls to make a permanent record?
-Is written communication better than phone conversations with notes how about email?
-If we send a letter or email and there is never a response what does that imply if anything?
-Should we be creating documentation of what works well?
Crystal Jackson: Always, always put everything in writing with dates and notes about the substance of your conversation. If it isn't in writing, then it didn't happen..... If you don't receive a response, then follow up with additional written communication to confirm your understanding.
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galloway, Ohio: hi my name is gina and I have a 4 year old son who just started preschool this year, He will be in kindergarden next fall and was wondering if you have any advice on what I should start doing now to prepare the teachers and others involved with his school so they will be redy for his arrival? Also should I look around for a school that seems to be more familiar with diabetes to send him to or what would you do if it were your child? Thank you for your time and helping me sort through this, gina( mother of hunter age 4 diagnosed july 2004 )
Crystal Jackson:http://www.diabetes.org/safeatschool.
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Brighton, MI : Disaster planning...who determines what is needed? Parent, nurse, principal, or school superintendant? Should we demand a written protocol for the school to follow...can we?
Crystal Jackson: Work with your school to incorporate an diaster/emergency evacuation plan into your child's 504 or other written education plan. Your school nurse will also want to incorporate with your child's health care plan.
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Damascus, MD: My 8yo has T1 for 1 yr, and the school nurse (who isn't usually there on campus) insists that her MMP
Crystal Jackson: A 504 plan is a legal document that clearly sets out how diabetes needs will be met, while a DMMP sets out your child's school diabetes care regimen. If your school uses a pre-printed form and you find that it doesn't adequately meet your child's needs, there's no reason that your form (assuming that you and the school have agreed upon its provisions) can't be incorporated by reference by the school's form.It is also important that school staff who have custodial care of your child are familiar with the contents of both plans and understand their respective roles in the implementation of these plans.
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las piedras, pr: my son has diabetes and has his snack between 2:00 to 2:30 every day. His science teacher makes him leave the room to have his snack because she doesn't allow food in the classroom. Hence, he misses important information. Can the teacher make the student leave the classroom to have his or her snack?
Crystal Jackson: Recommend that you develop a 504 or other written education plan whereby you and the school agree that your son can eat his snack in the classroom. Many times - and sounds like it may be the case here - all that is needed is education about the necessity of a snack to ensure your child's health and safety.
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Jensen Beach, Florida: Hi Crystal, What can I do when the provate school my child attends an a school voucher, refuses to accept physicians orders and the physician goes along with the school's request? Thanks for the informative chat!!! Margaret
Crystal Jackson: Need to know more about your school's concerns and what care your school is refusing to provide. Does your school have an order from your child's physician at all? For example, your school cannot require you or your physician to change your child's insulin regimen just because they don't have the resources (i.e. school nurse or trained personnel) to administer insulin.
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Brighton, MI : Testing in the classroom, when is it most advantageous...and who determines? If a parent requests this to be done can the school deny it? What about testing at the students locker?
Crystal Jackson: It is the consensus of the diabetes health care community that students who are capable of doing so should be permitted to check blood glucose levels anywhere, anytime - if authorized by parent, student's health care provider and with input of the student's school nurse or other school administrator who is familiar with the student's regimen and ability. The advantages to being able to test anywhere, anytime are obviously to avoid missing unnecessary classroom time and to ensure that hypoglycemia is promptly treated without the necessity of traveling to the clinic.
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Roseville, Minnesota: Crystal, you mention that schools must provide a person able to help with diabetes care--for instance, in the case where the school insists that only a nurse can do the injections, they must provide a nurse--but I've heard of public schools that are forcing the parents to come in to do injections because no school nurse is available, or trying to bully the parents into using alternate insulins to avoid schooltime injections. Have cases like this gone to court, and are there examples we can point to where the school had to provide a resource?
Crystal Jackson: There is currently a lawsuit in California filed in federal court that has a set of facts very similar to the situation you describe. There are several success stories from around the country where parents who have been placed in this situation and have successfully advocated for trained personnel to administer insulin when a school nurse isn't available.
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Vienna, Ohio: They won't let my Daughter test in the classroom over Fear of the lancets.. When I asked about a meter and Lancet to be kept in the classroom in fear of a Lock down, I was told they would have to check on that and would need to be locked up!??
Crystal Jackson: Students with diabetes should have access to their equipment, supplies, and medication at all times. Recommend that you document this in your child's 504 plan. You might remind your child's school that there are many other items in the classroom (scissors, staplers, bulletin board tacks, lab and shop tools) that are readily accessible to students that can cause far greater injury.
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ADA Moderator : We're close to the end of our time here today.
Do you have any thoughts you'd like to leave us with Crystal?
Crystal Jackson:
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ADA Moderator : Preparation of your child's return to school begins way before the commencement of the school year. Prior to the first day, (1)make sure your school nurse has your child's current physician's order or a Diabetes Medical Management Plan; (2) work with your school's 504 team to develop a 504 or other written education plan;(3)make sure the school nurse and other school staff members responsible for your child understand YOUR child's diabetes; (4) be a diabetes resource for your child's school - offer to help train school personnel or to arrange for training; (5) be familiar with and utilize ADA's school resources found at www.diabetes.org. Again, most schools are doing a fabulous job of meeting the needs of students with diabetes; however, when challenges arise, employ the ADA Legal Advocacy mantra of educate, negotiate, litigate, and legislate. Information and assistance from ADA is just a phone call away 1-800-DIABETES. It would be a good idea to contact your son's new school before the end of this school year to begin developing needed plans and so that the school has enough lead time to train appropriate school personnel. Recommend that you call 1-800-DIABETES and ask for our school discrimination packet that will provide you with information and tips. Also, check out the many resources available on In a nutshell, in order to be eligible for services under Section 504, one must have a physical or mental impairment that substantially limits a major life activity. The MLA can be learning, but need not be learning. Other examples of MLAs are walking, eating, caring for oneself, performing manual tasks, and metabolism. If your school has taken the position that learning impairment must be demonstrated, then it is confusing 504 with another federal law - IDEA. I urge you to review and share the resources on ADA's website with your school in order to educate them about diabetes and 504 and to call 1-800-DIABETES to discuss your specific situation with our Legal Advocate. Margaret, I am sorry to hear about your difficulties with your son's school district, but it sounds like your persistance has paid off. Unfortunately, change does not occur overnight so we must keep at it. As you know, OCR is the government agency responsible for enforcing 504 is is the appropriate agency for filing an administrative complaint. While it is always preferable to institute change at the local level, you may want to consider seeking legal counsel if you are contemplating further action. Please give us a call at 1-800-DIABETES and ask to speak to our Legal Advocate to discuss your specific situation.
That's it for today. Thanks so much for taking the time to be here Crystal.
Thanks to all of you who joined us by asking great questions or by just tuning in. If you wish to continue any of today's discussions please feel free to visit the ADA Message Boards.
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We hope you found this interesting and informative and that you'll join us again next time here at ADA Live. Our guest will be Peter Sheehan, Director, Diabetes Center of Greater New York, who will address your questions about improving your vascular health at 1:00 p.m. ET September 21, 2006. See you then.
Crystal Jackson: This was great. We need to do it more often. thanks everyone for your wonderful questions.
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