Problems with college dorm not willing to make accommodation for daughter w/ alopecia universalis

My daughter is 18 years old and about to be a freshman in college.  She has Alopecia Universalis which she was diagnosed with in 8th grade.  She desires to go away to college and try to spread her wings a little bit.  At the college she wants to go to, it is required for freshmen to live in the residence halls (dorms).  She has been very hesitant to go off to college due to the simple fact that she is so worried about privacy issues with the rooms and bathrooms. 

She is emotionally not at the point where she is comfortable with anyone seeing her without her wig on.  The college only has one residence hall that offers private and semiprivate rooms/bathrooms.  The rest of the residence halls have large community bathrooms. 

I called the Student Access Office to talk about my daughter filing a request for housing accommodation due to her medical condition.  The lady I spoke with was very cold, dismissive and not compassionate.  She said the Access Office is only responsible for removing barriers to access for students with disabilities and my daughter’s condition did not meet this criteria and they did not need to make an accommodation just to make her feel more comfortable.

 Does anyone  know of any recourse, or supporting documentation I can submit about what an emotional toll Alopecia can have on those afflicted with it?  I appreciate your time and any assistance any of you can give me.

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Danna, 

I'm so sorry.  Make it easy.  Get her doctor to write a letter stating that your daughter needs a medical single with a private bathroom due to medical necessity.

Don't get into the details- keep it simple.  I went through this as well and wish you the best of luck. Rely on the ADA if you need to.  

Good luck!!

Courtney

I work at a small liberal arts university and we would NEVER turn our back on a student in your daughter's situation.  This would make me think twice about sending her there TBH.  What if she gets to school and needs further support/counseling?  It's disheartening that anyone could be as dismissive as the woman you spoke with.

I would suggest speaking with Student Disability Services, the Dean of Students office, and/or your daughter's admissions counselor if she has one.  Especially if she's a good student, the admissions folks should want to advocate on her behalf (I know it shouldn't be this way, but admissions offices generally do give preferential treatment to desirable students and will help them navigate the rest of their enrollment arrangements with other departments).  The person answering phones in the office you called probably doesn't have much influence over these sorts of requests anyway -- she's the first point of contact and is probably used to telling people asking for special treatment NO.  

It's unfortunate, but if this is a large institution I anticipate you will have much more difficulty in getting your (absolutely legitimate) request fulfilled than you would with a smaller institution.  Best of luck to you and your daughter.

I'm sorry she's going through this, but Alopecia isn't really considered a medical condition by many people/agencies.  It takes good information to inform them that eyelashes really do matter, and self esteem is a necessity to function in society.  I developed AU with a telltale "spot" on my head in 2011 that quickly spread everywhere.  Being in the Army at the time, I was given a number of "fun" nicknames and asked numerous times if I had cancer.  As a former Ranger, I have remarkably thick skin and a biting sense of humor, so none of that really bothered me, but I was 42 at the time, not 18 like your daughter.  I recommend that you read each post on here and find the one from the 23 year old recent college grad and use that as your template to success.  She seems to have the answer to your daughter's dilemma and can provide one on one support.  Todd

Hi Danna,

I have had your post on my mind ever since I saw an alert to it in my inbox. I am a student myself and lived in college dorms last year. It's late at night here, and this is my last stop before sleep... so I'm sorry if I'm missing key information in this thread before writing this, as I'm unable to read it all right now.

The thing that concerns me most is the coldness and lack of compassion from the person you spoke to. My application to live on campus started with a bad experience over the phone too. Even though this woman's behaviour was horrendous, and she did hold a significant position in student housing, I still moved there. I figured she is only one person, and perhaps I could just keep my head down and avoid further contact with her. 

Little did I know, that her behaviour was setting the scene for what the entire year would be like... only it just got worse and worse as time went on. And that's why I haven't only moved off campus, I have changed universities altogether. What I have now is a horror story that absolutely beggars belief (and it's a newsworthy one, which I do actually intend to tell).

I am not saying that the same will happen to your daughter at all. In fact, I feel like my previous university has just about got to be "one of a kind". But there are people who have a tremendous knack for making alopecians feel like the day they got diagnosed, is the day they kissed being treated like a human being goodbye. Sometimes it's just because these people were born with their foot in their mouth, other times it's overt and vindictive... but after everything I have been through, I find it hard to accept that any of these people make good accommodation providers for young alopecians. 

I think it might be a good idea to make a few calls... search the university's website for key words like "student advocacy", "student union", "discrimination officer", and "student services" to find the right people to chat with. Keep everything absolutely amicable of course... but if they make that hard to do, or you find that there are multiple staff with callous attitudes, take notice of all the red flags. This isn't only about a private bathroom, you also need to know that your daughter would be moving into the safe and supportive environment that all student housing services claim that they provide.

Hello Danna - The emotional stress this condition causes is very evident. I would in a very polite manner keep engaging someone higher up and to whom the "Student Access Office" reports to and explain to them about the condition. In many cases, I have seen people shrug this of as "just hair" and it is up to us to explain the emotional stress it causes in young kids and their families. As someone else pointed out, reach out to your dermatologist and get an official letter explaining the situation and the need for a special housing accommodation. We have an extremely supportive family doctor and a leading dermatologist who have been amazing, caring human beings before being a doctor. Also, reach out to folks at NAAF.ORG

Thanks

Jags

Has anybody heard back from the OP?

The ADA and other laws that protect people from housing discrimination due to a disability state that you are not required and it is illegal to ask you what your daughter's disability is when it comes to a reasonable accommodation. They can only verify that your daughter has a disability through a third-party verifier (usually a doctor, counselor nurse, ect. but doesn't actually have to be a medical professional) that would have knowledge of her disability and the nexus between the disability and accommodation requested. Never are you or your third-party verifier required to reveal exactly what her disability is. If they ask you, sue them or file a complaint.

I work for a company that has many low income apartment complexes and part of my job is assisting our reasonable accommodation coordinator in making determinations on reasonable accommodations. So, I liason from our home office and individual property managers on reasonable accommodations daily.

"Discrimination against persons with disabilities is prohibited by Section 504 of the Rehabilitation Act of 1973 and Title II of the Americans with Disabilities Act of 1990 (Title II prohibits discrimination on the basis of disability by public entities, whether or not they receive federal financial assistance). This includes discrimination against individuals currently without an impairment that substantially limits of a major life activity, but who have a record of or are regarded as having a disability."
http://www2.ed.gov/about/offices/list/ocr/complaintprocess.html
Key statement is "regarded as having a disability". If you are perceived as having a disability then you are covered too. People can discriminate or treat you differently if you look like you have a disability, even though you may not. I get this all the time when I just run errands without my wig. Hope this helps. Sorry I didn't get to see your post sooner.

I feel that Alopecia definitely fits into the perceived as or regarded as category. In addition, the psychological impact of the disease is huge, especially when it happens in your formative years. Just a little help dealing with it, such as a housing accommodation, can lead to a major difference in your daughters ability to focus on her education instead of trying to deal with the alopecia and live in a communal housing situation like a dorm.

Thank you so very much to everyone for sharing their stories, suggestions, and thoughts. The outpouring of concern and reading about other's life experiences was wonderful for my daughter to see.  After several unsuccessful phone conversations,  I went on and submitted documentation from my daughter's doctors to the university and the National Alopecia Foundation wrote them a letter.  After a few weeks of persistent phone calls, they changed her housing to a private dorm room in which she shares a bathroom with one other girl. Got her moved in last weekend and she started classes on Monday!

I have a huge problem with this! I have a lot of questions to ask of this college. But the main is that can i pay someone to write my paper that will help me with my study of alopecia study. Because this is the serious disease and should be dealt with immediately. 

I completely agree. I discovered this problem when I was still young. But after I went to O by Cirque du Soleil Show Tickets Online I just took heart. I think that really good emotions can improve your well-being!

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