@compmom - If the ramps at the back of the building and lecture hall seating were the only issues, my D would still go. Like I said, she’s lucky in that her issues are mild compared with what others are going through. One of her doctors referred her to a clinical trial a couple years ago, which introduced us to a handful of other families in the area with the same dx. We heard stories of missing weeks of school and inpatient stays for treatment, while my D and one other girl were barely missing school and holding part-time jobs. The accommodations she needs are pretty straight forward and I don’t anticipate any issues.
Sorry I wasn’t clear…more of a kind of philosophical question for everyone, though the specifics would differ.
@compmom if that was the only limitation, I’d go (personally). I’ve quickly learned that there’s rarely a “perfect” universally accessible space so if there’s something that’s even close, I’d take it.
Now that it is decision time, I am trying to rescesitate this thread… where are students with medical disabilities settling on this year? We are still waiting on decisions and financials for a bunch of colleges, but I am becoming overwhelmed worrying about things like dorm living (used mattresses – yuck!).
^^Do you never stay in hotels?
@twoinanddone I actually do on occasion, but I have to reject hotel rooms about 1 in every 5 times because of a mildewy odor that gives me an asthma attack. I can’t be in a room with air fresheners. I can’t be in a room where bleach has been used recently. At least in a hotel room I have the option to reject (sometimes it takes a fight with the credit card company to get our money back, but we always do). We often call ahead of time and explain that I can’t stay any place dusty or musty. I bring my own pillow. This is not me being fastidious – if I stay in place where I am uncomfortable, half way through the night we are going to the ER.
With dorm rooms a student is assigned sight unseen and expected to stay their for the year. They are given a mattress that could be ancient, harboring millions of dust mites, and there is no cancelling the dorm fees.
Several of the schools we had contact with had it as a ‘rule’ that if you removed the mattress at the beginning of the term to use your own, you had to store it and return it at the end of the year, so clearly a lot of people don’t want that mattress and want to bring their own. I bet you could ask the schools to remove the mattress and you could bring your own, or if you asked nicely get a new one from them. All schools replace some mattresses every year, so just explain and get a new one.
One of my daughter’s had a new mattress, and I think the other one did too but not 100% sure. It was definitely clean and coated in a plastic so we could wash it off and then cover it with a mattress cover, foam mattresses and our sheets.
I know it is a problem for you - and me too - but you’re not the one in the dorm, you son is. Does he have allergies? My daughter could sleep in a hay stack and not sneeze, but air fresheners or flowers do me in.
@twoinanddone Yes, basically I have half of what my son has (genetic condition). So he has my issues plus much more. 3 sinus surgeries in 3 years, use of nebulizer, etc.
While my experience is more with LD students than those with medical issues, I recommend that the students visit the disability services offices before they apply. If a school seems to be reticent to or unable to meet a students needs or a student gets a bad feel from the office and would be reluctant to use it, that would be a great concern.
Can’t you just get a mattress protector/cover and basically wrap the mattress?
Yes you can. Although I was actually only using the mattress thing as an example…
UPenn was actually very accommodating with my son, but he still ended up taking a (medical) leave of absence. He has T1 Diabetes and a litany of other issues including some medical stuff. His adviser was also really wonderful. In the end, though, it’s up to the student to ask for what they need. They still treat them as adults.
An initial email to CMU disabilities office garnered a wonderful response in less than 12 hours. So far that is promising.
We really didn’t have the heart to meet with disabilities offices while visiting colleges … just would seem to take away the focus. Of course – that was just us – I wouldn’t want to dissuade any other family from doing that.
@sbjdorio I guess we will know tomorrow if Penn is in contention. I do hope it did (or will) work out for your son.
@psycholing, keep us posted. I can tell you that my son lived in the new dorms at Penn (he got his first choice, and I have to think his medical conditions were one reason why) and they are clean, clean clean-new mattresses, etc. However, they were also really isolated because of their design, so that was a downside for my son, an introvert.
I bet if he registers with the disability office of whatever school he attends, and one of his needs is a new and/or clean mattress, it will happen (even if you have to buy it and bring it in).
@sbjdorio Funny story: I went to Penn for grad school over 20 years ago. I didn’t have a listed disablity, but I did get them to accomodate me with a private room for pumping breast milk (had a baby right at the onset of grad school). . At first the building manager (a 40-something year-old man) said I could do it in the general TA office (the one that 30 students or so had keys for). I agreed I could do that, but I informed him I would of course be pumping topless. I was OK with that if everyone else didn’t mind. He turned kind of purple and immediately found me a private room…
Ha! So funny, @psycholing! That’s one way to advocate for yourself. 
I bet you and your son can be equally creative in getting his needs met. I’m glad that colleges are willing to work with disabled students. Your son sounds like a great kid-perseverance is a great quality to have.
With my LD kid we visited the disability office on each tour if possible. For my kid with LD and migraines we did not. She registered with the disabilities office and was awarded accommodations but they were mainly for her LD. She was able to get notes, the recording pen (which she never used), tests in a quiet room(also it was up to her to make use of this option-the key was giving the prof enough notice.Some were no problem, others more difficult to work with). She also was suppose to get an early registration time- this happened some of the time, other times I’m not sure what happened. If problem was disability office or the registrar.
The headaches were more complicated. Unless the professor was familiar with migraines they didn’t really understand that she couldn’t make it to class or turn an assignment in when she had a headache. They also didn’t understand that a migraine can last for days and even after the worse passes you aren’t able to jump totally back in. If she missed an assignment they wanted verification from the student health center. With the stress of worrying about getting a headache made the headaches worse and more frequent. She was able to get a minimum progress waiver due to her headaches. Almost every quarter she had to drop a class. With the quarter system if you have a couple of headaches and miss 2 or 3 classes each time it is extremely hard to catch back up especially if you are in the sciences. One quarter they assisted her in taking a medical withdrawal. We didn’t get our money back but it wasn’t on her record. Ultimately she decided the quarter system and her large University wasn’t a good fit. She is finishing up through an online program from a traditional university. Her degree will say the University but not that she received it online.
I will add that during the whole time she was under the care of a neurologist and he was great in providing her with documentation of her medical condition.
I have two kids with disabilities, one with multiple health conditions. I just want to say again that the latter attended Harvard and they were amazingly supportive, especially after freshman year. There is indeed a support group for students, undergrad and grad, with disabilities and I am sorry the young woman who was in the article did not find it.
At the college level, accommodations cannot pose an undue burden for the school financially or administratively, and cannot substantially change the academic program. Obviously these are subject to interpretation and various court cases continue to define things.
My kid had two medical leaves. Yes she requested accommodations. But when she felt her illness prevented her from meeting standards - her own or the school’s- she took a leave. That is, when extensions or reduced course load or whatever else usually helped, stopped being enough.
She also got work done in advance in case something happened (I mentioned a lot of this earlier in the thread). In other words, she recognized that there were things she needed to do at her end, as well as expect from the school’s end. I think she earned respect for the way she faced these challenges, without complaint or anger, and consequently may have even received better treatment.
So I am sorry, but I just reread the article in the original post and find it annoying and also think it misrepresents the potential experience of those with disabilities at Harvard.
I don’t see the purpose of naming schools because I believe every school should be accommodating. But students and families need to understand the limits on what can be granted, too, and understand what is “reasonable.” Medical leaves are not the end of the world, and every family dealing with disability should purchase tuition refund insurance.
ps migraines are tough in college, but sometimes a neurologist can write a letter explaining that brain disorders like migraines (this gets the point across that they are not just headaches) can impact cognitive function for a few days, and that migraines are one of the few disorders that require rest for the brain in order to recover.
@compmom - the neurologist was great in writing the letter explaining the need for rest. The problem was that in a fast moving science class if you miss several lectures it is very hard to keep up. With her online program she does just what you mentioned. She tries to get as much done as she can when she is feeling well because she doesn’t know what will come later in the week. She recently found a new neurologist in her area. She had been coming home every 3 months to see her pediatric neurologist and felt it was time to find someone near where she lives. It took 4 months to get an appointment. They are trying some new ideas to see if they can reduce the headaches. She would really like to be able to attend graduate school.
I think the biggest factor in our situation was not necessarily the school but that at 18,19 years old many students aren’t able to articulate what they need. In my D case she was scared that the professor wouldn’t believe her that they would think she was slacking off.
Also if your student has a medical condition make sure the school is located in an area with strong medical services.
@mom60 Really good point about being near a medical center. In our case that is essential…but it really limited places we could apply.