I’m seeking some advice on how to go about the college process as a disabled student, and what to expect from college life when I eventually get there.
For reference, I am a 17m (trans) HS junior with multiple chronic illnesses - Hypermobile Ehlers-Danlos Syndrome, POTS (postural orthostatic tachycardia syndrome), Joint Hypermobility Spectrum Disorder, as well as some various like skin conditions and other general symptoms. I also have ADHD and autism. I’ve been using a cane for a while, but intend on transitioning to forearm crutches and maybe a walker or something.
I have a few questions about the college process in regards to my health and stuff:
Should I disclose any of this to admissions officers or in the “additional information” section of my applications? I know generally you’re not supposed to when it comes to like mental illness and such but my conditions do greatly affect my schooling and way of life so I’m not sure if it’s something they need to know about or not.
When I apply, do I mention that I will need accessibility support or not?
When do I start contacting accessibility offices after my applications? Directly when I get admissions letters, after I make my decision, over the summer that year, or when I actually start college?
Is it difficult to use mobility aids in most colleges? By difficult I mean like, is it hard to find the space you need to get around comfortably or to store them, and is it common to face harassment from other students because of it?
Lastly, is it hard to get the services you need if your condition is relatively mild? I can still walk (though it is painful) and I can read and write (though again, painful) and I don’t fully pass out from my POTS (I get veryyyy lightheaded), so I worry that I won’t be able to get things like alternate note-taking methods (recording or having another student do it), access to A/C, etc. because I’m not “disabled enough”.
Also anybody’s general experience with this stuff would be helpful too! There aren’t many resources I’ve found about disabled students’ college experiences and I really want to be prepared for when I get there.
The most important thing YOU can do is find colleges that have good disability offices and can provide you access to the supports you will need. This is very important.
You will need documentation that your accommodation are needed…and you will need to advocate for yourself in college to get them. No case manager in college! Some colleges have better supports accessible than others.
Are you tied in with any agencies in your state that might be able to help? Vocational rehab or some other service?
Unfortunately no, although my PCP is very supportive so I don’t doubt that she’ll be willing to help. I’m supposed to be in PT or OT but my parents won’t take me lol.
Do you know how I can get in contact with some kind of service / which ones there are that would be good for this? I’m honestly new to the whole chronically ill thing and my parents don’t really believe it so I’ve been trying to do my own research and I’m still kind of struggling to find support services.
I have a 504 but not an IEP - not sure if I qualify for an IEP because I’m still an above-average student and they try to avoid giving supports to kids that they think “don’t need it” (extremely stupid criteria honestly). I will definitely chat with my counselor about it though, thank you!
OP- you MUST let your PCP or any specialists that you are seeing know that your parents are not following the protocol on PT and OT. I am not a healthcare professional so cannot comment on your illnesses, but if your PCP assumes that you are working on your mobility with a professional AND learning to compensate with an OT team, you need to be transparent that this is NOT HAPPENING.
Hugs to you. If the issue is transportation, this might be something your medical team can help with (I had a disabled parent who got PT and OT at home, for example). If the issue is their denial that you are coping with something serious, then a sit-down with your medical team is in order.
Kudos to you for being so proactive with your health.
Ahh, thank you! My PCP knows that they haven’t taken me despite having 3 separate prescriptions and referrals for PT over the years. While it isn’t a good thing, I will say that at least she is aware I’m not getting the support that I need. We have the transportation and time, but they definitely don’t see my conditions as being serious, and they make comments about how I need to do exercises on my own to prove I’m committed before they take me (which?? is the opposite of how that works?? lmao) and that I don’t need it. My therapist is veryyyy upset with them about this.
Thank you, though!!! I will keep pushing for it as hard as I can.
A phone call from your PCP to your parents to explain that “doing exercises” on your own is NOT what PT is all about. I had a rotator cuff injury- (nothing as serious as what you are dealing with) and if I’d tried to be my own therapist I would have damaged the muscles permanently. Not to mention not having the right equipment…
Yeah, I am very worried about injuring myself while doing exercises. It doesn’t help that I’m overweight (baby fat / genetic fat that is incredibly hard to get rid of) so they really do think I’m just out of shape or something. I’ve been doing light yoga and very light weight training twice every other week to satisfy them and to get some movement in but even with “baby” exercises I feel like I’m gonna dislocate something.
@thumper1 and @blossom have already discussed some of the issues that you need to be addressing now, but here are my thoughts regarding two of your questions.
I would not. It’s not supposed to affect their decisions, but if you reference it, then it could color how the admissions officer views your application.
I would wait until after you receive an acceptance (via the online portal, snail mail, etc), before reaching out to the accessibility offices. You will want to know what types of documentation they require but also see how they’re responding to you. Are they suggesting additional services that they think would be helpful, or are they trying to minimize and pare everything down? Are they making suggestions regarding housing accommodations, or are they leaving you to figure out all the questions to ask? Also, ask to speak with current students who are receiving services and see what their impressions are and the quality and reliability of services. For instance, does the note-taker frequently skip class or provide poor quality notes?
Also, prior to receiving any acceptances, you can certainly ask questions on forums and investigate the quality of the services (as this may indeed impact which school(s) you decide to apply to).
Wishing you the best of luck through this process.
My son is a junior at college and has both mobility challenges and other hidden challenges. He shared his medical history at a high level in his Additional Information essay. While he had a strong academic record, he had limited EC’s and wanted to explain that his condition impacted his ability to participate in EC’s and also disrupted his studies, which made his academic record a pretty amazing achievement. I think his application would have been incomplete without this context. Ultimately he was accepted at 9/10 colleges to which he applied, all but a very high reach with a 5% acceptance rate. He’s in an honors program now studying CS with a psych minor and was just admitted to their 5 year accelerated BS/MS program. A good part of his success in that program has been great support from the college and his professors.
Once admitted, be creative about asking for accomodations. His school provides him with a comfortable steady chair and desk or table instead of an uncomfortble chair with a tiny desk attached. This is because he tends to fall and is a greatest risk while standing. This might be something that would help you.
Everyone is required to follow the law, so you will get what you need, but it’s also a matter of what can you do to make it easier on yourself. If getting around is difficult, you might want to look at campuses that are a little more compact, or that have a shuttle service or accessibility van. Do you want/need to take some/all classes online–look for colleges that offer that option. Are you more comfortable in modern buildings with elevators or do you prefer older campuses where elevators might be harder to come by? Is there a community of students with disabilities–google student clubs at the colleges where you are interested–or look up whether or not they have a chapter for Delta Alpha Pi–honor society for those with disabilities (if they have one, that’s a good sign.) As to when you should make things known–it’s going to depend on you. Admissions offices do not determine who gets what accommodations, so describing supports needed would not be useful. If your story of disability is important to you or if it explains some hiccups in your record, you might include it in your extra area, or have your counselor mention it. Generally speaking, I’d advise reaching out to disability offices after you’ve been admitted but before you’ve deposited. They won’t be able to make a decision at that point–you need documentation for that–but they can give you a ballpark of the types of things that students with your types of disabilities have. Generally, accommodations match the documentation that is provided by your physician along with your self-report. There isn’t an easy check-point of you need x to get y. It’s a conversation with the disability services provider. While having accommodations in high school is great, there is no direct correlation between a 504/IEP and college accommodations. Colleges want your original documentation. those 504s can be helpful additional information, but really your documentation and your self-report matter most. There are thousands upon thousands of disabled students in college. You’ll make your way. I’m sure of it.
I recommend you do not disclose any disability, in your case, because I do think that it would adversely affect your applications. Why take the chance? Apply based upon the merits of your record, write essays about your hopes and dreams, what you want to study, how that specific college will help you to achieve your goals. After you receive acceptances, then go visit schools and visit the disability offices.
“I’m not sure if it’s something they need to know about” - They don’t need to know about it when you apply, it’s up to you. They will have to make accommodations after you are accepted .
Nope. They need to supply those accommodations whether you make them known when you apply or not.
You should do a lot of research on schools zeroing in on Disability Services offices. Build a list of schools that are a match academically, socially and medically (trans friendly health center and campus, as well as nearby specialists that deal with your medical conditions)
Apply to the schools you want to apply to. You contact the offices after you are accepted and immediately inquire about the supports you need. Definitely factor your experience dealing with each Disabilities Services office into your final decisions as it sounds like this will have a direct impact on your success. Most offices will set up a time to meet with you before the term starts to have all of your supports in place. You should discuss not only academic supports but also any residential accommodations you may need.
Your diagnosis should be enough. The Disabilities Office will usually ask you what you need and work from there. The accommodations you mentioned are pretty common so you shouldn’t have a problem. Not all schools have dorms with A/C, so you should check that out. When there are limited rooms with A/C, usually they do go to people with medical needs first. You might also want to inquire about getting a single or being in gender inclusive housing.
