No time to waste today so I’m going right into it. This email is from a mom whose daughter has celiac, is making ALL of her own food at college, yet still has to pay for the $5,000 per year meal plan. Why? Because the reaction to gluten is not severe enough.
Read on and please offer some words of advice if you have them.
Hello Gluten Dude,
I am seeking some advice regarding my daughter’s required college meal plan. Here’s the gist:
She was diagnosed with Celiac in June ’14 (biopsy confirmed). Her symptoms are “silent”, but of course doing all that internal damage. She suffers from migraines, iron def anemia, insomnia, skin conditions, and irregular periods, to name a few.
[Dude note: Those don’t sound like “silent” symptoms to me.]
She’s in her first year at a private college which requires freshmen and sophomores to stay in dorms and pay for the meal plan. We checked out the food, of course, before signing on and they assured us that she would have plenty of GF options. Wrong.
At her 6 month followup this December, the anti-body levels had not changed a bit. Compare that to her younger brother, who, after eating GF at home, showed anti-bodies at normal levels at his 6 month followup last June.
Ok, so we decided to approach the school with an alternative plan. She would cook her own food, using her own equipment, in the dorm house’s full sized main kitchen. We also requested that she be allowed to move into a private dorm room so that she’d have more storage space for her equipment as well as a larger fridge/freezer.
They were SUPER accommodating in this and allowed it without question. All we needed was documentation from her doctor and she got her own room under the university disability program.
[Dude note: This sounds like a success story so far. Alas…keep reading.]
Then, she applied to be removed from the meal plan. She was denied on the grounds that because she did not go into anaphylactic shock from gluten ingestion, they could not excuse her from the meal plan.
This meal plan costs $2,500/semester.
It’s not so much about the money as it is about the lack of understanding. Sure, gluten won’t kill her right away like a peanut would someone with that allergy; it will just kill her slowly by silently destroying her intestines where over 70% of her immune system lives; not to mention, her silent symptoms will seriously undermine her efforts to excel in her education.
I am writing to see if you have any suggestions or advice on how I can best approach this situation. Have you, or any of your readers ever experienced this obstacle? I am not asking them to change the way they run their kitchen to accommodate my child. All I’m asking is for some recognition of the seriousness of this disease and to not make us pay for something we absolutely CANNOT use.
Thank you for your time and for giving us a voice.
You are quite welcome and I’m sorry for the utter BS you are going through. It’s not just a lack of understanding on the college’s part, but a lack of compassion, something we are seeing far too often in today’s world (and I’m not just talking about celiac.)
I’m sure the college is simply thinking dollars and cents (but no sense). On-campus students normally pay for the meal plan…off-campus students normally do not. I assume it’s worked into their budget.
My advice is to simply stick with it. $5,000 is a heck of a lot of money to spend on something that is not being used.
Anybody else been in a similar situation? Got some advice? Step right up…don’t be shy.
In Massachusetts, the Department of Justice classified celiac disease as a disability and required Lesley University to train staff and set up GF stations for a student who was required to be on a meal plan. It sounds like the university here is working with the parents/student, but it doesn’t sound like they are fully compliant in terms of the student getting GF options from the university. I do not believe that a university can charge for a meal plan that a student is unable to use. Be persistent and document all requests/efforts made by you and the university to deal with this situation. Check out the decision below.
http://www.ada.gov/lesley_university_sa.htm
My advice is similar to Debby’s – keep trying by contacting different people, document everything, and when you want to escalate things, mention the ADA (Americans with Disabilities Act). Since your daughter has a Celiac diagnosis, that should make that part of things easier. Sad as it is, sometimes the unspoken threat of a lawsuit can make things move when simple common sense fails.
I don’t know if she applied to be removed from the meal plan through the disability office – if so, it sucks that they’re not better advocates. But if she went through the bursar’s office or student life, she might try getting the disability staff to wade into the fray. Since they’re more experienced at dealing with this and they’re already within the system, they may be in a position to know the more effective routes to pursue.
Also, on a practical level, I’d focus on getting her out of her meal plan obligation for next year first, then talk about getting a refund (try for full, but you may only get a pro-rated one) for this year. Speaking as someone who works in higher ed, it’s always easier to get people to part with money that’s part of next year’s budget which you haven’t already paid than it is to get them to refund something for the current semester. Good luck!
Trying contacting someone from the local media near the school, perhaps some negative publicity will spark some responsiveness.
Unfortunately we experienced something similar at Ohio University. Our son (diagnosed with Celiac Disease via biopsy in 2006) started OU in August 2014. They claimed they could accommodate his GF needs and at first we were very pleased. Then he started getting sick…GI issues, unable to focus, etc. OU has the freshman and sophomore dorm/meal plan rule, so we knew it wouldn’t be easy to work out. We had our doctor write a note and began the process of terminating the meal plan. At first they told us we wouldn’t get any of our money back (over $1800 for the weeks he wouldn’t be using the plan) and then I fought back. The form we had to fill out noted that we had to wait 14-21 days to see if it was accepted and if we would receive any money back. I wrote a letter that accompanied our form to terminate the meal plan (the form requested a signature that we were agreeing to their terms…I didn’t sign it) that explained the seriousness of Celiac Disease and gluten exposure. I believe I also mentioned bringing in our attorney if need be and we had a response and our money back in record time. Our son has since transferred to a college that is closer to home so he can live at home for now and then get his own place with friends in the fall.
I like the suggestion about contacting local media to get involved. It is a shame that a doctor’s note isn’t enough.
I’m with Kim on this one. There is no surrender, none, nada, zilch, zero. We are not talking about someone who walked into a school cafeteria and said they wanted a gluten free option because they heard about it on a celebrity news show, we are talking about someone who has to avoid gluten completely, because it could kill them eventually if they didn’t. And you have a biopsy to prove it.
Honestly, this has Local News Channel 6 written all over it. It also has “attorney” written all over it. You have a documented disease that disallows your daughter from eating the options provided by the school – not by her choice, but because her disease doesn’t allow her to eat it.
We cannot sit by quietly and allow this stuff to happen. Remember also that often, the squeaky wheel gets the grease. I recently retired from the military, and I am going back to school. I am technically a college freshman. I am not forced to pay for a meal plan because I don’t live on campus, but I assure you, if they tried to force me to pay for a meal plan that I knew I couldn’t eat, I would be in the school president’s office every day until he/she saw me, and I would pull out a piece of paper listing the contact information for the 10 local media outlets that I would be passing my concerns to if he/she didn’t resolve the issue immediately.
This is a tiring disease, and an inconvenient one. This issue is about the lack of compassion, and it is also about the money, make no mistake.
Best wishes. Please keep us updated on this one as this has serious implications for many people.
Keep fighting.
Celiac Soldier
The school sounds like they have been partially reasonable (regarding the room and cooking) so I would like to assume you haven’t been able to talk to the right people yet regarding the meal plan. It sounds like there is a breakdown on how gluten affects her. Perhaps a letter of clarification from the Dr to the administration ( cc the president, Dean, board of reagents, etc) that Celiac Disease is an autoimmune disease and not an allergy. Anaphylaxis shouldn’t be mentioned as a criteria for accommodation or denial at all. So that’s what makes me think there isn’t enough understanding on the part of whoever issued the denial. Go over their head with clarification and see if that helps. If not, a good lawyer shouldn’t require more than 5k to resolve this relatively simple issue and at least then you are getting something for the money 😉 best of luck.
I agree Shannon- Sounds like some education is required clarifying that coeliac disease is an autoimmune disease and NOT an allergy
I graduated from college two years ago. Freshman year was a bit rough for me, and I only ate baked potatoes, rice, salad, fruit, and cereal. By the second semester, I was tired of it and started to meet with the director of dining services and the head chef and we would have meetings on what they could do to help me. I gave them lists of brands that I used, they got a dedicated gluten free toaster and waffle iron, etc. They really went above and beyond to accommodate me. I could email or text the chef and let him know I was coming in for a meal and he could make me something special if I wanted, since the cafeteria style lines were most likely contaminated, even if they started out gluten free. At first, I objected to my own meals because I was embarrassed having to go back into the kitchen, stand and wait, and bring back a plastic wrapped plate to my table, I just wanted to fit in and eat what everyone else was eating. Finally I realized that I should take advantage of it, and my college experience was forever changed, and really made the next three years better. It helps that I was at a small private liberal arts school, and I was one of the few with allergies, so they would really ask for my feedback.
I suggest becoming friends with the dining staff and head chef, once you develop a relationship, they will really go above and beyond.
Bring in the ADA and prior legislation! They need to know not to mess around or there will be a lawsuit on their hands! It’s not that hard to just let her off the meal plan!
This is exactly what we went through. I finally got UW to let us out of the meal plan and I am helping another student who is going to be a freshman next year. If you email me, we can exchange phone numbers and I am very happy to help. Not trying to spam this post but here is a look at our story: http://glutenfreemom.com/blog/struggles-university-washington-gluten-free-meals/#.VR6mGUbzRl8
What they are doing is illegal and you have the right to get your money back.
I agree that you should go over the heads of the department that denied your request for removal. Continue up the hierarchy until someone listens to you. If you have to, mention the lawyer. Sometimes even a letter from the lawyers office will make them sit up and listen before you have to go the route of a lawsuit. If all else fails and you can’t get the university to listen, then go for more drastic measures with the media and/or a lawsuit. Please stick with it though and be the catalyst for change on their policies because it will make life much better for future students in the same boat as well as your daughter. Good luck! We are all behind you on this!
This is incredibly illegal AND has recent, highly relevant legal precedent. The attorney who brought – and won – cases exactly like this is now the Secretary of Labor. Don’t take this bullshit!
Gluten Dude –
I work at a college and please tell this parent and her daughter to FIGHT FIGHT FIGHT! They should be writing to the president of the college, the alumni association, the trustees and anyone else in a position of power. They may also consider having an attorney contact the school’s general counsel.
This cannot be ignored. Feel free to pass on my email address to this parent and if I can assist in any way I will.
Will pass along the word…thanks.
At Northland The Environmental Liberal Arts College in Ashland, WI, I experienced a similar situation. I was very involved with food issues on campus, as the Food Systems Educator and Co-Chair of Environmental Council. I had a doctor write a letter stating that due to contamination issues eating anything from the cafeteria would pose a dangerous threat to my health. Residential Life staff denied the doctors request to have me removed from the meal plan, told me to switch to the smallest meal plan (3 meals a week and $100 in the campus store, where the only thing I could maybe eat was potato chips) and went as far as to suggest that, “It’s only three meals a week Jen, you can bum them to your friends if you don’t use one.” At $12/meal plus the store money, I could just give it all away to friends, and then buy the food I could actually eat. My course of action took me to document buying and cooking all organic, mostly local, totally gluten and dairy free meals in home averaging $3/meal. In the interest of getting off the meal plan, I learned that I actually was the tipping point for the college to either break even or lose money on their contract with the food service company. They told me there was nothing they could do, we had to follow campus policies. I had to call my Dad in. He talked to Dean of Students and she told him the same thing, and he said: “BULL SHIT! The solution to this is a stroke of a pen and you know it.” She pushed back, and so did he: “Either cancel her meal plan or cancel her tuition, how much money do you want to lose right now?” and instantly I was removed from the meal plan with the stroke of a pen.
To add insult to injury, months later I was written up for drinking on campus, even though I hadn’t had anything to drink because the only alcohol in the room was gluten filled beer. The man to write me up was the same man who spoke directly with my doctor.
Keep fighting, and stop paying!
I agree that this falls under the ADA, and the 2013 Lesley University agreement with the Department of Justice is a precedent. Use the Lesley University agreement to respectfully approach the school’s general counsel department. The school probably has no idea it is out of compliance with the ADA. Your daughter may need to register with the school’s disability office and provide documentation of her diagnosis first. More info: http://www.celiaccommunity.org/advocacy/lesley-university/
As an aside, this situation is one of the reasons why our foundation recommends that parents not put their children on a gluten-free diet without first getting tested for celiac disease. A celiac disease diagnosis by a physician is often necessary for gluten-free diet accommodation at a university and in other settings of public accommodation.
A test for the DQ2 and DQ8 genetic markers would give a high reliability diagnosis combined with symptoms in the past. This would mean that she doesn’t need to eat gluten to generate a positive iGg test, ruining at least a semester of her life, or get an invasive endoscopy.
Also, I have autoimmunity (still figuring out what flavor) that has been diagnosed for now as Non Celiac Gluten Sensitivity (NCGS) and still qualify for ADA protected accommodation.
http://www.ada.gov/q&a_lesley_university.htm
Contact the schools legal team, explain prior legislative decisions, and explain that you will contact your own solicitor if necessary and sue for clear discrimination.
Going into “anaphylactic shock” is NOT the definition of allergy!!! And this school needs to be corrected for the sake of ALL allergic people.
Consuming gluten destroys the central nervous system. That means she is being deprived of the education for which she is paying.
Most lawyers will at least talk with you for free. Contact one to see if it’s worth pursuing.
Also, constant the local government ADA agency. They may be able to get your money back with a simply phone call. I had to call the government consumer protection agency for a different matter. They conferenced me to listen to the calls. There is a totally different attitude when they hear someone announce themselves as XXX person calling from federal-agency-Y to “clear up a matter on behalf of ____”. It took about an hour for them to “fix” my problem.
Good luck
prior legislative decisions, and
I don’t have any helpful suggestions, but I wanted to say this is BS, and I stand behind this mother and her daughter completely!!! Hopefully all the suggestions above will help to resolve this!
So I went through the same problem in college, I still had to pay for the meal plan even though I could not eat the food offered! Even the “gluten free” options were super cross contaminated. I appealed to be exempt from the meal plan numerous times and kept getting the same BS about it. So I just dealt with it. If I had to spend the money, I was going to get something out of it! I bought things like bottled water, kitchen and bathroom items, and any other random thing like pencils at the campus version of the convenient store. It sucked to be paying more for the items, but I was not going to let them waste my money! It is super frustrating, but until people realize just how serious Celiac is, we have to make the best of our situation!
This brings back memories from when I was in college. I went through the same things. Freshman and sophomores were required to have a meal planning they were living in dorms. Going to a small private school, there weren’t a lot of off campus options.
We did the sit down with dining services and was assured I would be accommodated. The first year I watched as gloves were never changed while handling my food prep and there were way too many cross contamination issues that I couldn’t eat anything even after being assured it was safe. After absorbing the cost that first semester we went to my physician and had her write a letter to the university stating that due to my health condition warranted being exempt from the required meal plan. We had to resubmit a new letter for the following year, but that was enough for me to be removed from that fee.
I know that for my university they said it was an issue where they required it to ensure each student on campus had adequate food available to them. Ironic since I still couldn’t eat there.
I hope you are able to find a solution that will work for your daughter. It is definitely an extra challenge and I wish her the best of luck!
The adequate food supply is a huge issue. I taught on a campus like this where I could not get food for lunch or anything else within 10+ miles, even at the H-E-B. They didn’t cater to us at the location, so there was nothing on the shelves.
This contributes and compounds the school’s legal risk – if there’s no where near by, the school HAS to do more than remove a fee. They have to feed their student safely – what ever that means to the student, family, and physician – not the school staff or vendor cooks.
Lawyer up. CD falls under the ADA.
You’ve gotten a lot of advice, I’m gonna give you some insight in to higher ed. I work at a large 4 year university and this is what I know – don’t assume that one office is talking to another. They are most definitely not. I would encourage you to start with the Disabled Students Program Office and ask them to get on the phone with you and the person responsible for billing for your housing and dining office and have your DSP staffer be your advocate for getting out of the meal plan. Honestly, universities are usually really reasonable with this kind of thing, you just have to get through a lot of bureaucracy to get what you’re looking for. And if all else fails, yes, a letter from an attorney should do the trick. Just be sure the letter includes exactly what you’re asking them for to resolve your case. And hopefully you know someone with a law degree that will do this for you pro bono…perhaps you could start with the draft letter for the attorney. Universities HATE lawsuits and will do everything possible to avoid litigation. One other avenue to explore, if you don’t want to escalate to an attorney’s letter is to have your student go to the student Ombud’s office. Good luck and don’t give up!
Please read this!!! I had a very similar situation in college, only I was not yet diagnosed, I was in the process of diagnosis for celiac. A little known fact: each college must have a representative who handles Americans with Disabilities Act (ADA) cases. Celiac is covered under the ADA and, as such, the law requires the school to make reasonable accommodations, and paying for a plan she does not and will not and cannot use, is not reasonable accommodations. You need to find that person. Depending on how helpful your school’s ADA rep is, that person should go to bat with the administration to ensure she is accommodated. If not, you might need an attorney. But I can tell you that under the ADA, she would qualify for not just the accommodations she has already received, but exemption from the meal plan charge. Personally, I had to go through a lengthy hearing process, an appeal and had to have many documents from my doctors, but eventually won my case. I was actually allowed to move off campus early (my school only allowed seniors to live off campus) to meet my needs and was exempted from the meal plan. Keep fighting. And use the law, it is on your side. Also worth mentioning, my ADA coordinator wrote a letter each year to all my professors that explained my condition and required them to make reasonable classroom accommodations as well. Being sick and undiagnosed, I missed about 30 percent of my college classes and was forced to take a 5th year. I was eventually diagnosed the summer before that 5th year. But with the help of the ADA and my rep, I was able to get very fair accommodations for those first few years so my grades did not suffer because of my disease. It was brutal struggling through classes while being so sick, but I graduated and managed to pull Cum Laude too. Best of luck to her.
Great story!
I have a suggestion that might have the college change their view. Since she is stuck paying for a meal plan that she will not use, have her “invite” some people from a homeless shelter, women’s shelter where as her portion will not go to waste.
Just an idea!
fight this by all means. mention lawyer, ADA, the school will fold. obviously the emailer doesn’t want to name the school, but i’d like to know what school it is.
it is hard enough college students with celiac to deal with food, it is disgusting that a school would make it even more difficult and charge the student for the difficulty.
would love to get updates on this specific story as it proceeds.
I would advise her to get a lawyer. In a lawsuit involving Lesley University, a student complained that, ‘the school’s mandatory meal plan did not provide sufficient gluten-free food alternatives, and the school did not accommodate the needs of those with gluten-free diets by excusing their participation in the meal plan or providing a reasonable alternative to it. ‘
I work at a college and I know the hoops we’ve jumped through to make sure we are compliant with Title III . As an employee, I have a choice to eat in the dining rooms. Students who live on campus don’t have a choice, so the policies and procedures regarding food allergies and celiac are followed to a T.
As there is a legal precedent involving Lesley University and the DOJ, I would push it.
http://www.ebglaw.com/publications/act-now-advisory-doj-serves-notice-celiac-disease-and-severe-allergies-now-classified-as-disabilities-under-the-ada-far-reaching-implications-for-virtually-every-facility-serving-food/
Just to stress what everyone has already said. There is precedence already set with the ruling against Lesley University. They had to reimburse the family for charging for a meal plan the student couldn’t use. Many colleges have changed their ways because they don’t want the same to happen to them. My daughter’s GI specialist in Boston told us about the case and how incredibly foolish and arrogant Lesley University was. Shame on them, but kudos to the Justice Dept for setting them straight. All the family wanted was to opt out of the plan Lesley deemed mandatory. Not to mention Lesley should have provided safe food.
This spells out the terms in the settlement/agreement and the $ amount any student identified as having had an issue, got compensated:
http://www.justice.gov/opa/pr/justice-department-and-lesley-university-sign-agreement-ensure-meal-plan-inclusive-students
it’s likely that the law/regulations vary state-by-state on this, but you should absolutely consult legal counsel in the state where this college is located!
the other alternative is to find a more supportive school….
With a high school sophomore who has celiac, this story gives me chills. Is there a list of schools that have a successful track record or at least a positive approach to meeting dietary limitations?
The ADA should cover this. You might want to show her the link below:
http://www.ada.gov/lesley_university_sa.htm
Here’s another link to an article about the Lesley University settlement:
http://americanceliac.org/doj-lesley-settlement/
Today Kellongs announces Gluten Free Rice Crispies has been discontinued http://www.thesavvyceliac.com/2015/03/27/gluten-free-rice-krispies-discontinued/ Sad day for Gluten Intolerant and Celiacs. The question is, has Dr Gibson’s 2013 study and saying Gluten Intolerance is false DOOMED the Gluten Free food eaters. Is this only the beginning of Gluten Free products disappearing from the shelves. Is the Monsanto’s GMO and Wheat industries getting rid of the Gluten Free movement. Sadly I think the answer is YES
Definitely don’t accept this. It may be a bit of a run around, but you can try contacting EVERYONE! Try contacting the Provost – this is a higher up office at the university which is a good liaison between students and staff. Email Deans and definitely get the Disabilities office involved (hopefully they weren’t the ones originally saying no). The american’s with disabilities act can cover celiac (not sure if the states are allowed to interrupt, but in MA Celiac is considered a disability, and reasonable accommodations have to be made.
Look what FARE just released
http://www.foodallergy.org/2015/040615?tr=y&auid=15365141#.VSP0yntCgnM
They also are offering this webinar:
FARE’s next webinar, led by Kristi Grim, FARE’s College Outreach Manager, is scheduled for Wednesday, April 22 at 1 p.m. ET. This webinar will tackle the important topic of choosing a university and planning for campus living with food allergies. Grim will provide an update on the FARE College Food Allergy Program as it enters its pilot stage, and address aspects of college life that will be covered through the program for students with food allergies. The presentation will address the role dining services, residence life, health services, disability services and emergency services all play, and provide some best practices for students and parents in working with your school to request accommodations.
As part of the FARE team, Grim works to ensure the safety and inclusion of students with food allergies on college campuses. Grim worked with committees and expert stakeholders to develop FARE’s “Pilot Guidelines for Managing Food Allergies in Higher Education,” which form the basis for the FARE College Food Allergy Program. She is currently working with universities to implement the guidelines and training during a pilot phase of the program.
Space is limited, so be sure to register today! Interested in viewing previous webinars? Check out our webinar archive online.
Register link: https://attendee.gotowebinar.com/register/3525165485636744962?tr=y&auid=15362406
My daughter goes to college and she has Celiac Disease – she is also required to pay the meal plan but is very limited on the gluten free food – they have a room where they keep gluten free food – but it is usually the same things everyday. There is also 4 other dining centers but there is no gluten free options at those dining centers. So she is limited to only one dining center. It is not fair that other students paying the same amount get to eat in the other dining centers and have way more options. They said they will not refund any money to us and are not sure if my daughter can get a room for herself – (currently living with roommate that leaves crumbs everywhere and cross contaminates the microwave/fridge etc.) We went through disability services and they received the medical documentations from my daughter’s doctor requesting she has a room by herself because of cross contamination and also her numbers are still very high. The lady at the disability services office told my daughter it may be better to look into another college – She was very hurt by this – Also called our state disability office and they told me Celiac Disease does not fall under disabilities even though I mentioned Section 504. Please Help !
Hi! I am so sorry to hear about the poor accommodations at your daughter’s school. My school was similar at first, but after pushing them hard via multiple meetings with the head of dining services, nutritionists, and center for students with disabilities, many positive changes were made. I can only eat at one specific dining hall, but there, I know I can trust the food. I call ahead for all my meals, and I am able to specify what foods I want. I have my own microwave and toaster and blender, and a freezer in the back where many of my specially ordered products are kept.
Freshman year, I struggled with cross contamination, and my TTG levels skyrocketed. I was sick constantly. Sophomore year, I am amazed by the progress my dining hall has made. I am no longer fearful and anxiety-ridden at every meal. Through CSD, I have also been approved for a single dorm room next year because of issues with my roommate cross contaminating. Feel free to contact me if there is anything I can do to help you and your daughter!
Thank you ! We have had numerous meetings school is not budging. Was trying to at least get an on campus apartment but we got denied . She has to switch universities but not sure they can accommodate either. Very frustrating !!
I can’t believe the school refuses to assist you! Have you had her TTG levels tested to prove how she requires special accommodations to keep her healthy? It is incredibly frustrating when it feels like no one is listening. It took many meetings and emails to get through to my school, but in the end they were able to assist me. I found that having documentation from my gastroenterologist and my blood tests helped a lot to prove that they were making me sick!
are you able to say which school? the response about looking into another college is of course dreadful. but perhaps 504 doesn’t apply as the school may not receive federal funds. maybe this helps, and according to the second paragraph below, clearly diagnosed celiac falls under the Disabiities ACT
STUDENTS PROTECTED UNDER SECTION 504
Section 504 covers qualified students with disabilities who attend schools receiving Federal financial assistance. To be protected under Section 504, a student must be determined to: (1) have a physical or mental impairment that substantially limits one or more major life activities; or (2) have a record of such an impairment; or (3) be regarded as having such an impairment. Section 504 requires that school districts provide a free appropriate public education (FAPE) to qualified students in their jurisdictions who have a physical or mental impairment that substantially limits one or more major life activities.
12. What is a physical or mental impairment that substantially limits a major life activity?
The determination of whether a student has a physical or mental impairment that substantially limits a major life activity must be made on the basis of an individual inquiry. The Section 504 regulatory provision at 34 C.F.R. 104.3(j)(2)(i) defines a physical or mental impairment as any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological; musculoskeletal; special sense organs; respiratory, including speech organs; cardiovascular; reproductive; digestive; genito-urinary; hemic and lymphatic; skin; and endocrine; or any mental or psychological disorder, such as mental retardation, organic brain syndrome, emotional or mental illness, and specific learning disabilities. The regulatory provision does not set forth an exhaustive list of specific diseases and conditions that may constitute physical or mental impairments because of the difficulty of ensuring the comprehensiveness of such a list.
Major life activities, as defined in the Section 504 regulations at 34 C.F.R. 104.3(j)(2)(ii), include functions such as caring for one’s self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working. This list is not exhaustive. Other functions can be major life activities for purposes of Section 504. In the Amendments Act (see FAQ 1), Congress provided additional examples of general activities that are major life activities, including eating, sleeping, standing, lifting, bending, reading, concentrating, thinking, and communicating. Congress also provided a non-exhaustive list of examples of “major bodily functions” that are major life activities, such as the functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions. The Section 504 regulatory provision, though not as comprehensive as the Amendments Act, is still valid – the Section 504 regulatory provision’s list of examples of major life activities is not exclusive, and an activity or function not specifically listed in the Section 504 regulatory provision can nonetheless be a major life activity.
Please know that we feel for you!
Every student with Celiac disease should be able to choose to go to college away from home and not be tucked away, out of sight, unable to associate with fellow students during the most social times of the day.
If the college doesn’t even accept federal monies (unless they are a religious organization that doesn’t accept federal monies), the following is a guide to getting your equal rights under the law:
Realize that there are processes in place that, at the very first hint there is resistance to catering to your or your child’s gluten-free needs, should be followed. 1) File an informal then formal grievance. 2) The Department of Education will expect you to have filed a complaint with them (504) within 180 days of your knowledge that there is a problem with civil rights being violated. This route is the least flexible in time but colleges hate to deal with the feds and it may be the quickest. DoE OCR has an Early Resolution Mediation process. Your lack of equal treatment, benefit of socializing with other students not to mention the money and (maybe) difficulty in accessing gluten-free food for a reasonable diet also have a certain timeline. Your health. There are regional offices for the Office of Civil Rights for the DoE and this may be your shortest time for a resolution (after any grievance with the university has already failed).
3) The Department of Justice (Lesley University agreement, 12/12) takes longer but will, upon examination of your complaint, initiate an official investigation and protect the laws of the United State under the ADA. The benefit is having gluten-free food. Just the hint of an investigation may get the administration moving. 4) Knowledge civil rights attorneys dealing with higher education disability will handle the case as well, but we have found that, even in Massachusetts, they are difficult to find. (Many represent colleges and universities.)
The college must prove that they will suffer terribly in accommodating your or your child’s needs under the law.
These processes all take time and any period of hesitation after finding resistance will come into play. My daughter was poisoned with gluten for a year and half at a small, 175-year-old college where the 504 coordinator told us in 2013 that “they” were not like Lesley University. Persecuted by the disability director, sent to counseling instead of having advocacy for her needs, put on academic probation when all the devastating neurological symptoms returned, denied even the apartment that the 504 coordinated had suggested so she could be out-of-sight, out-of-mind for the rest of the those who do not want to be bothered, my daughter (a National Merit Scholar) may never go back to college. One less STEM major to worry about.
Getting sick and starving because of a problem with ignorant academics who think they know what is best for your child is a terrible end result and is shocking when otherwise well-meaning people purposely harm you or your child. You are not a helicopter parent but may be perceived as one. Don’t hesitate. We all need to take a firm and resolute stance so that our children can attend college where they are admitted and not be apologizing for their needs. We as Celiacs have been left out, put aside, apologizing for needing to eat our “safe” food for too long. This is the law and civil rights take a lot of work to uphold. (Just ask other groups about this!) There is a word for the attitude of those that can eat gluten…it is entitlement. Microaggressions about Celiac disease are rampant at this time and we need to stand up for the rights of those who are precious to us. Learn the vocabulary of the oppressed. It will give you a better backbone. (I had to toughen up and am still in shock.)
Take good care…and if any of you know of a disability attorney in Massachusetts that is familiar with the Leslie case, please post…we might at least sue for the $50K+ lost in dropped courses and unfit food to eat if my daughter doesn’t go back.
my situation is a little different, my son is only in middle school, this is first year he went back to school after two years of home school, during those two years, we found he is intolerant to gluten, he has skin rash since he was little, and which also lead to BXO diagnosis recently after skin biopsy. So when this week, he goes back to school, we request the gluten free meal from school which is current provided by his school, but they need a signature from our physician, but our physician would not sign the form (which is just for a gluten free meal), she wants we reintroduce gluten into my son`s meal and test for Celiac disease, although it is good for diagnosis purposes, right now it is not the point, and I do not want my son goes through this painful intolerant just for a school form. But the doctor refused to sign the form and we have to prepare all the meals for my son. I am just wondering how you middle school deals those things, although gluten intolerant is not several enough to life threaten, but it is still a situation for some kids.
Ugh…why can doctors be so frustrating (for lack of a better curse word)? I know it’s easier said then done, but my advice would be to find a doctor who will listen to you. What if he did get tested and it came back negative? Your son still has a gluten intolerance and still needs to be gluten free. I hope you find a solution maggie.