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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.
Replies to This Discussion
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Permalink Reply by Tanya on
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Well put. We all have to live with the hand we're dealt. College would be a great place to test the waters with her situation to learn how to handle people's reactions and expectations on her own. College is a shared experience with all kids of people with all kids of quirks and disabilities, she might be pleasantly surprised that her big secret is not as big a deal as she is expecting it to be. She could have AU for the rest of her life and dealing with it is as much of a skill as the many others you learn at school.
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Permalink Reply by Susan VanOrder on
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I would discuss this with them stating that a wig for someone with alopecia is actually a prosthetic and would be the same as an artificial leg, arm or other extremity.
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Actually, Susan, I have had some people whose insurance company would not pay for a wig UNTIL the code for prosthetics was used. Then the insurance company paid. Go figure.
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Permalink Reply by kastababy on
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Actually, Susan, that would be incorrect.
In order to be recognized as a prosthetic, it *has* to meet the clinical definition of a prosthetic, with the key determinant being that said piece is made to fit one - and ONLY ONE - head, in addition to being purchased from a DME (durable medical equipment) supplier. A wig can be mass manufactured and procured anywhere from a trade show to a swap meet to a beauty supply store to a specialty boutique.
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Permalink Reply by Craig on
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Just curious. You said there was one residence hall that offers private bathrooms. Why doesn't she go live in that hall? Having alopecia sucks and we have to make choices. The world won't bend for us, and because of that we get stronger.
Since she's going to a brand new place where no one knows her, this, IMO is the perfect opportunity to share her alopecia story and try to start getting comfortable without a wig. My biggest problem with alopecia was having people find out who knew me when I had hair, and then seeing me without it. But I find when I go new places or meet new people, it's way easier. But that's just me and we are all different in the way we cope and deal with alopecia. Might be worth talking to her about though. Good luck.
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That is what we are trying to do - get them to move her room assignment to the residence hall that offers the more private bathrooms. That was her first choice but they placed her in one of the other dorms that only have community bathrooms. Thanks!
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Just some helpful experience from 2 ends. Not only was I a student with Alopecia Universalis but I am now a residential life administrator.
When i went to school I submitted a doctors note recommending a single room for physical and emotional needs since I did not know anyone going to my school who I was comfortable enough to live with. I had to pay the single rate but I was granted one.
As an administrator I know now it really depends on the school. A doctors note from a doctor or counselor is almost always needed but some schools require their own health center to verify the diagnosis and recommendations and some will just take your doctors note. You should speak to residence life directly, not the disability services or access office because while they may want to give you an answer they may not really know what reslife will accept (you would be surprised at how some schools really don't have great communication between offices)
Also look on the reslife website because their may be a form to fill out already.
Please feel free to contact me and I will help you through to process if you need. Most reslife folks anyway got into this to help students.
I would also encourage your student to start having these conversations and advocate for herself. Once she enters college, the student is the adult and holder of their academic record and some schools won't even talk to you - only the student.
When i was in school I spoke to my mom first and she helped me find all the info and prep me for the conversation but she made me have those conversations myself which really helped me in life and to get some confidence. Also most administrators in college not only can't talk to parents but it makes our jobs a lot harder because sometimes the students don't tell parents the whole story and we can't tell parents anything. It's very hard.
My name is Rose and my email is piacenterose@gmail.com
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Permalink Reply by Keith on
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Are you requesting special accommodations under the ADA? Does the university have a disability resource center or the such? Contact them for help. This is what I found through a Google search. The question is if this falls under the federal definition of a disability. And if so, is the accommodation reasonable.
http://www.apa.org/pi/disability/dart/toolkit-three.aspx
Under federal disability law, only if the student has disclosed a disability are you or your program responsible for providing accommodations. Most often, the student is advised to initiate the accommodation process with the disability resource center or office on campus. This office then determines whether the student is eligible for services and, if so, coordinates appropriate accommodations and services based on the documentation provided and in consultation with the student and other professionals, as appropriate. It is the also the responsibility of students who seek disability-related accommodations and services to provide written documentation of their disabilities. You or your program may also opt to obtain your own professional determination of whether specific requested accommodations are necessary.
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I really think that instead of fighting the college for a private room for your daughter, you should instead be encouraging your daughter to embrace the college dorm experience. Roommates and sharing a bathroom are part of it! And remember they're not like locker Rooms, there is still privacy. she'll get a chance to talk with her roommate before school starts and she can talk to her openly about it and then she'll have an advocate and ally before she even moves in. College is about new experiences and finding yourself. She's a young adult and the rest of the world will not treat her as though she has a disability. She has a physical difference (yes it can have emotional consequences.) And that is what society will expect of her. Everyone has differences, most people just have ones that just aren't as easy to spot. Imagine all the kids with autism heading to school with social issues. They probably also would prefer to have a single... but thats just not reality. Imagine how strong and empowered she'd feel once she owns this situation, chooses the best way to tackle it and then does it! That's being an adult.
I realize this is scary. When my stepdaughter switched to a new school (middle schoolers are rough no matter where you are!) this year we were all a little nervous. Storm doesn't wear a wig or headcovering of any kind because its so hot here in FL she chooses to go without. She walked in with her alopecia universalis and explained to her whole class at the end of her first week what it was and that she wasn't sick or contagious. That was it. The kids were understanding and accepted her without any issues. We have always let Storm lead us with what she's comfortable with and then just offer support. Yes, there are true idiots out there who can be just plain rude... but we talk about it and work through those emotions when they come.
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I lived in a college dorm for three years. I'm a very private person, and at that time I wasn't willing to share my issues publicly. This is how I handled it, and I survived just fine. I had a roommate,my first two years, a different one both years. My third year, I paid extra for a private room, and sometimes that is an option if they have space. All our dorms had public restrooms. I kept a spare night time wig, which I changed into either in bed, or a bathroom stall, and switched the other out inside a duffle. Sometimes I changed in bed quickly, in the dark, or behind a closet door. My bedtime one I kept a very short hair tie on, so in bed it wouldn't be noticeable that it was different. I showered, and washed normally, with my wig on, and if it wasn't due for a cleaning, I kept a towel on,or a shower hat, to keep it dry. Seriously, it wasn't a big deal, and I'm a very, very private. Honestly, I would have been mortified, if my mom had called the school, and told anyone !!! Seriously, she can figure this out. I have been there, as we all have, I get it would be easier to have a private room. In doing so, she is going to lose the experience of living with a roommate, and lose that social experience. I became close enough, and trusted my roommate, at some point to share openly with her, but I still never changed in front of her. I actually kept a steel lockbox in my closet, with my night wig locked inside it, so nobody would actually accidentally see it, when they came in to "borrow" clothing.
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