www.incontinentsupport.org

Hi! I’m 18, I have spina bifida at C5-6 and use a power wheelchair. I’m a commuter student at my local college, still living at home but hope to eventually move into the dorm with personal care assistants. I just started school this fall, and I’m taking two classes on campus and three online. I guess I’m trying to ease into it. Next semester, because I’m taking two lab classes, I’m going to be on campus for six hours two days a week. At some point during those days, I’m going to need toileting assistance. I use a diaper for both bladder and bowels, and I don’t have the strength or dexterity to change myself. Is this something that the student health center has to do for me? I need a place to go, because I’ve already discovered that even the wheelchair stalls in the campus bathrooms aren’t big enough for me to recline the chair and lie prone as I need to do. The health center sounds like the place. I’m just not sure what services I have a right to, or whether I need to hire someone to help with this. I have notetakers in class, but I don’t think that’s part of what they signed up to do. Also, two of them are male and I’m not comfortable having a man I don’t know that well doing this for me. Thanks, Mallory

I think that you need to contact the health service and ask them. There also may be some special program for special-needs students. I'm sure who does what with regard to assisting special-needs students varies from place to place. I agree that toilet assistance is not part of the job for note-takers.

Although there is federal legislation dealing with this, it leaves considerable latitude to individual states. Your college student health department should be able to help you; however, if they cannot or will not, contact your local state representative; their office personnel deal with such constituent issues routinely.

Thanks, I emailed health services and I'm waiting to hear back from them. It's a state university, if that makes any difference in what my rights are. I appreciate the advice. Mallory

Hi Mallory,

My primary employment is at a University Counseling Center and we routinely help students deal with requests for academic accommodations all the time. All universities and colleges are required under the Americans with Disabilities Act to offer reasonable accommodations to any student with a documented disability to help ensure everyone gets full access to academic success. These accommodations typically include things like note takers (which you've already alluded to), braille translated textbooks for students with visual impairments, books on tape for hearing impaired students, private testing areas for students with ADHD and so on and so forth. The problem with your request is that while you're certainly entitled to academic accommodations to help you be successful, such as being allowed to be late to class or needing to leave class in order to attend to toileting/changing issues, without these things impacting your grade or evaluation, the accommodations have to be directly related to academic success. The actual management of the medical condition is still up to the individual to deal with. As an analogy, a university would provide braille textbooks for visually impaired persons but would not be responsible for buying them glasses or assisting them with any part of caring for their eyes/vision. As such, the university health center my agree to help you with your needs but they would most likely be well within their rights to charge you or your student account an office visit fee for every time you utilize their service. They would also most likely be well within their right to state that this is a request that exceeds the scope of their services. I'm not trying to dissuade you from asking or making your request, but rather to help explain why I'm thinking you're most likely going to hear back that the answer is "no".

I hope this information is helpful.

CJ

Hi CJ, that's exactly what they told me yesterday. They don't provide that service, they will help me find a personal care assistant but I'm responsible for paying for it. That's okay, I just wanted to know what my options were.

Bless you, Mallory. I am a member of a Roman Catholic, intentional community, and I will remember you in prayer during the coming days. Your commitment to your studies is admirable and inspiring. A truly just society would support you fully in all of your medical needs. Our society falls well short of that ideal. I am sorry for that.

Noe

Thank you, Noe. I already have PCAs to help my parents with my care. We pay out of pocket, but it's reimbursed/subsidized somehow. One thing I need to learn now that I'm an adult is how all the incredibly complicated financing of my health care and personal assistance works. I appreciate your thoughts and prayers. Mallory