chronic illness

<p>Great, hopeful stories- but his mother pushed his wheelchair? I wouldn't mind pushing a wheelchair for my kids (hypothetically) but that is not exactly an accommodation that approaches normalcy. I just purchased Brook Ellison's book, which several have mentioned, partly because I am curious what the mom did, instead of Harvard doing it, as one person said.</p>

<p>But otherwise, it is wonderful to read about the successes of these kids with obstacles, and that schools also worked with them. Thank you!</p>

<p>Compmom:</p>

<p>The Brooke Ellison story is not hat germane to your D. Brooke had massive health problems and her mom moved into her dorm with her, attended classes with her, and so forth (I sometimes came across the van that shuttled her from class to class on my way to work). But this was a chronic situation which is very different from your D's. It's the combination of highs and lows that make it difficult for your D (and her profs and the administration) to figure what is best. But by all means, read her book. It's very inspiring! And it shows what colleges are willing to do to accommodate students. In another case, S, along with other students in his major, once got a call from a director of undergraduate studies to help a blind student with his problem sets.</p>

<p>Please let us know what happens today in your D's meeting. I hope that the school is reasonable here, but it sounds as if you're needing them to come up with a new policy and it may be that a single meeting with a student can't produce something of that scope. Even if things work out well for now, I would still advise the meeting that includes the parents and the lawyer so just in case the issue arises again during her college career, you won't have to go through these difficulties and the stressful uncertainty again. In other words, it would be good to get the accommodation that she can take X number of courses (whatever you think would work) and still be counted as a legitimate, full time student for purposes of staying in school and keeping her FA spelled out in writing so that the school can't mess with her again.</p>

<p>Oh, in terms of the advocate, be sure that this is someone who has worked with colleges, as the legal situation is different for high schools. Forgive me if you already know all this. Finally, worst case scenario, if all else fails, you should be aware that the civil rights division of the dept. of education does deal with accommodation issues on behalf of students with physical challenges and LD's. They don't necessarily file lawsuits off the bat; as I understand it, they also have negotiators who can come in and help work out problems. You can find the phone number of the regional office for your state online.</p>

<p>We realize the situation with Brooke was very different, but someone e-mailed me about the role the mom played, and whether maybe the school should have done a little more, instead of the mom. So, just curious, because that is pertinent for any parent, who is trying to honor autonomy while also taking care of what needs to be taken care of.</p>

<p>I consulted my friend at OCR all through high school, but it seems he has moved or changed jobs. We never complained but would get suggestions, and also, as now, a more certain feeling about what to aim for. Actually, the state DPH also was very helpful, surprisingly, and first recommended to the school that the nurse go to the classroo, rather than the student go to the nurse.</p>

<p>I really appreciate the overview you are all giving, meaning looking beyond the short-term crisis. We thought we had done a lot of legwork and had provided reams of documentation. Now that we understand the kinks in the system a little more, I agree that meeting for a long-term plan with all people involved, not just disabilities service alone, or the dean alone, but together, would be great.</p>

<p>Any mom in this situation knows that things can turn on her if she is too "squeaky", but if she is not squeaky enough, nothing happens. A good way to solve that is to bring an advocate. Someone sent me a list today, which I can use. Money is a bit of an issue, but there is also an agency I can call that provides advocates in training, for free.</p>

<p>We knew there was a difference in rights between high school and college, and that may have made us a little more reticent. Now we are a little clearer on what should be provided, and this forum has been a big help.</p>

<p>The MD wants our daughter to go to the ER to again try to break this very long, two week migraine, and stay, even if inpatient, until it is broken. This is very unusual. She does not usually have them for days, let alone weeks. But she is all caught up, and still meeting with the disabilites rep tomorrow sometime. I will report the results. Thanks everyone.</p>

<p>p.s. I hope this thread is helpful to others as needed!</p>

<p>Compmom:</p>

<p>From what I know of the Brooke Ellison case, there is nothing that Harvard could have done that was not done. For example, I believe that classes were relocated so that Brooke could attend those she wanted to take, as not all buildings are wheel-chair accessible. Her mom was able to live with Brooke. Her mom--not someone else--was needed to take notes and write for Brooke as she had extremely limited ability to express herself. Brooke was ferried in a van from class to class. I do think that Harvard spent a huge amount of money and resources to help her. Brooke performed magnificently (I believe she graduated magna) and repaid Harvard's confidence in her. If you read her story, you'll see that no one but her mom could have taken care of her. But as I said, her case and your D's are entirely different because the nature of their health problems is so different, and therefore the accommodations must be different.</p>

<p>Compmom, I greatly appreciate your willingness to bring this issue up for discussion. I, too, have a daughter with chronic illnesses (RA and just recently diagnosed with fibromyalgia...as well as a severe headache that went uninterrupted and unabated for more than two years!) The challenges of dealing with doctors and figuring out what's wrong is challenge enough; the role of trailblazer (as you so aptly put it) is just one more "headache" for the student.</p>

<p>Although my daughter has been more than fortunate at her college (the support and understanding have been amazing), she still has to be her own advocate more often than she would like. What has helped her immensely is that she's very prepared to tell the disabilities office what she needs and then works with them to figure out a mutually-acceptable solution. For example, she came out of RA remission this quarter with a mega-flare, and quite literally was unable to walk to classes for more than two weeks. She informed the disabilities office and explained the situation, and they immediately a) informed her profs that her absences were to be excused (for those profs that had attendance requirements as part of their syllabi); b) ensured that she had meals brought to her as needed; c) had someone in her dorm check on her daily; d) had notes from her classes delivered to her every day; e) offered her the services of a scribe if she wished to dictate her homework responses; and f) provided information about voice-activated software that could help her complete papers on her computer (as well as providing an application to the State for a discount on this software). She didn't need to avail herself of all of this help, but it certainly relieved some of the stress knowing she didn't have to tackle everything on her own. </p>

<p>In addition, the Disabilities Office has a prepared report that she can present to any of her profs which details the ongoing effects of her RA, which is particularly useful when one has an invisible disability. I've read the report, and it's quite thorough...including such details as the "waxing and waning" of symptoms and describing thoroughly that the exhaustion that accompanies RA is much more than "normal" college student tiredness. The source of their information for the report...my daughter's direct input as well as medical sources.</p>

<p>Is your daughter familiar with The Spoon Theory ( <a href="http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf%5B/url%5D"&gt;http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf&lt;/a> )? My daughter has found this invaluable in helping to explain what life with a chronic illness is about. It was written to explain life with lupus, but it really works with any invisible illness.</p>

<p>I wish you the best in all of this, and of course, for your daughter too. I'm constantly amazed at how much my daughter is able to accomplish despite the extra burdens she has to deal with on a daily basis, and it sounds like your daughter is cut from similar cloth.</p>

<p>Anonymom suggested I contribute here. I'm not sure I have any great insight but it sounds like you have a great and courageous daughter.</p>

<p>We have a son who is highly dyslexic, has a weak immune system, was diagnosed at age 17 with sleep apnea, and who missed a lot of high school with illnesses. I've negotiated with the school system largely over the learning disabilities, although he is also quite gifted and I worked with them on that. Reading and writing were physically painful for him. He took four mid-term exams on four consecutive days during his freshman year in HS (1.5 hour exams for which he was allowed 3 hours). He got an A+, an A, an A-, and a B+. He got a splitting headache during the third exam (English) that lasted for over a week and got a B+ in geometry, which was trivial for him (he even wrote 4 > 4.2 on the test). He suffered from low muscle tone (hypotonia) when he was younger and this seems to have manifested itself in sleep apnea. He had very extensive surgery in mid-January for the sleep apnea. He is just starting to see the benefits and we hope that this will help reduce the illnesses in the future (I doubt it will eliminate them, but should help with immunity among other things). Like the girl who wrote the spoon theory essay, he has had to husband his energy every day. We worked with the school to create a partial home schooling program so that he could a) do advanced work at his own pace and not be held back by the school; and b) work on writing (and to a lesser extent reading) to bring his written communication skills closer to the level of his intellect. That plan was quite successful (especially part b). It also turned out that it gave him flexibility during periods of illness to take care of his in-school classes first and then get back to his home school classes.</p>

<p>What I do know a lot about is negotiating constructively. The advice I'm going to give is relatively generic since I don't actually know much about either the conditions or the school. </p>

<p>In your situation, I would really start by understanding the university's legal obligations and also its public statements about diversity and disabilities. What are the university's legal obligations under ADA? How if at all do its public pronouncements affect what it might do? I wouldn't do this to assert legal claims, but to know a) what you might have to resort to if the university were unyielding; and b) where there sensitivities are.</p>

<p>I'd then try to understand who were the relevant decision-makers at the university about this? Disabilities office, general counsel if they were worried about a lawsuit, head of college, Dean of Students, ... . If I could, I'd learn from others who had dealt with them. Were they sympathetic or unsympathetic? Were they flexible or bureaucratic. If unhelpful, why? Budget? What kinds of appeals seemed to resonate best with each? You may or may not be able to get info on each. I'd also focus on what the decision-making process is? Does one person decide? A committee?</p>

<p>I'd then meet with each person one at a time to explain the situation and ask for their help in terms of working out a plan that would work. E.g., explain that not all semesters are like this, the sporadic nature of the problem, how the school knew about this before she accepted, etc. I'd go into these meetings assuming that the person I would meet with was someone who wanted to do the right thing, and was not malicious or malevolent. Occasionally, I'd find people who were solely concerned with budget issues for SpEd, but that was actually quite rare. Most wanted to do the right thing, if someone could explain what was the right thing and why in today's circumstances.</p>

<p>After the first meeting, I'd assess which ones could be gotten on board, which ones would be hard, and if there were patterns of deference (e.g., I listen to the head of the disabilities services office). That would be a guide to how to sequence the conversations, though it might make sense to meet all at once at the end.</p>

<p>I wish you the best of luck and would be happy to give you more specific advice if it would help.</p>

<p>My son is currently applying to university and is applying, among others, to several Ivies. We've felt that one option for him might turn out to be taking one fewer course per semester and taking a fifth year. Would you be willing to PM me and let me know the school your daughter attends, as this might inform us about a possible Plan B for my son?</p>

<p>Wow, thanks everyone.</p>

<p>Mezzomom, I copied and pasted your daughter's accommodations- it sounds like her school did a great job. These are great accommodations (that also honor her independence, because they do not rely on you, as I noticed someone actually checked in with her, and brought her food, things which I am currently doing. I don't mind, but it would establish a better feeling and connection if the school did some of that). Notes being provided and even brought to her would be so helpful, and we have asked, but no success. Also, the scribe or software would help when she cannot use her right arm, which is happening for a week every few months: we did ask for a "notetaker," again, no success.</p>

<p>Shawbridge, your advice also very helpful, and yes, we do try to start off "constructive."</p>

<p>I can see clearly that there are some problems with our daughter's school's approach to disabilities/illness, either it is too fragmented in its structure, or because in some deep way they don't "get" it, despite the superficial appearance of wanting to accommodate.</p>

<p>We thought we had gotten way ahead of any potential problems. Not only did we provide multiple letters from MD's, a year ago,but my daughter and I wrote the letters to be signed, with lists of possible accommodations that we thought were both reasonable and thorough. Also, my daughter has met with the disabilities office twice. From all of that work, the outcome was a letter to professors that she should be able to eat snacks in class (which she does not need to do, and we did not request), and information on how to clear a postponement for exams (which means a make up two months later!).</p>

<p>When we asked (nicely of course) about the lack of accommodations, despite my daughter's work, we were told that the deans handled a lot of this, and also that my daughter would have to work things out with each professor, for each episode. This is cumbersome and has increased stress. Many days she is too sick to do all this, and so there are delays in getting work she needs, or even in getting permission to miss class, so she feels insecure until she is well enough to talk to a prof. The dean does e-mail them, but the last time, our daughter was told to take care of it herself- the day after 9 hours in the ER, still groggy from treatment.</p>

<p>There was a good dean who "understood," but she is, herself, on medical leave right now, so some of the problem is also from that changeover. That happened in January.</p>

<p>I think the deficiencies caught us unawares when things got bad, in December. We have been doing this for 15 years and are very experienced, establish strategies for "worst case scenarios" in advance, try to come at things with positive, cooperative attitudes, and know how to get tough when needed. But starting fresh at the college level, we were hampered by uncertainty as to what colleges do, in fact, have to do, and fear that they would make her leave if her requirements were too cumbersome. We have heard from another family that that is what students like this face, and there is an implied threat that if the leave is involuntary, it will go on the record. We would not let this deter us, but we thought that they actually could do that, and so my daughter was almost afraid to push things, and was more intent on proving she "could do it."</p>

<p>The other problem is the very obvious preference for dealing with my daughter only. In the fall, I and my daughter also were trying to arrange things so she would have as much autonomy as possible with her health care. (This is an issue someone like Brooke and her mom did not have to deal with in the same way: invisible disabilities can bring prejudice, and also I think for my daughter, emotionally, the more she connects with others besides her mom, to get her needs taken care of, the better for her- even though for me it would be easier to do everything!).</p>

<p>But while my daughter is ill, taking care of the RX's, referrals, appointments, remembering meds, advocating with professors and dean, calling doctors and coordinating them, is way too difficult. She still has all the diabetes care to do, too. It is hard for an 18 year-old short on time due to conflict between illness and work, to make the multiple, insistent calls needed to secure help. So now I am stepping in more aggressively. I was doing some of that, for her, but only w/her direction. I also have been there with her, and talk to her overnight, and drive in nearly daily with food and comfort, but a couple of weeks ago I also asked if she would be willing to e-mail the dean and all doctors to allow them to talk to me. This has helped, but I am still being careful to defer to my daughter's wishes and not intrude upon her independence. It is a balance.</p>

<p>We got a very confusing e-mail from the dean, which said that permission to drop to 2 classes was rare, and that the idea was that if you were too sick to take 3, then you would be too sick to take 2, and also would not benefit fully from the experience academically or emotionally or socially or whatever,</p>

<p>Then the dean said that permission to take 2 would not be granted for a condition that waxed and waned, meaning it would not be granted for someone who could foresee taking a full courseload in the next semester. But would be granted for someone with a chronic situation, such as a student doing chemotherapy. The inconsistencies and illogic in this statement are mind-boggling.</p>

<p>Strawbridge, I will pm you if I can figure out how, or pm me. Maybe we can change things a little so it will be easier for your son!</p>

<p>We looked into these things before my daughter accepted, and she also looked into things before applying. This school gave the impression it was very enlightened.</p>

<p>Compmom,
Best wishes for you and your daughter at the meeting today. I hope her pain is starting to ease.</p>

<p>You are right about the health-impaired student being the last frontier in equal access to education. I have a neighbor with a child who has Crohn's disease. This young person is simply brilliant and was accepted to our county's math and science magnet high school. This condition also waxes and wanes and , as a result, the student accumulated many absences and tardies the first year in high school. But, despite the pain, she was able to keep up with assignments and excel at all her classes. Her teachers were quite pleased and were more than happy to work with her to keep her on track.</p>

<p>However, the principal was unhappy with the absences. He wanted her to return to her regular high school and began a campaign to pressure the family to withdraw her from the magnet school. During her second year, he demanded a conference with the student and her mother every single time they were late. Some days he would not allow the student to go to classes at all. He would not allow teachers to accommodate her. In the end, the school simply called the family at home one day and told the student not to return. Evidently magnet schools are not for ill children, only for healthy ones!</p>

<p>The young lady is completing her work taking on-line courses from a Stanford program for gifted students. But she is quite lonely and is looking forward to college. She hopes to have a better experience. And I am definitely telling my neighbor about this thread! I hope it will help them prepare.</p>

<p>
[quote]
Then the dean said that permission to take 2 would not be granted for a condition that waxed and waned, meaning it would not be granted for someone who could foresee taking a full courseload in the next semester. But would be granted for someone with a chronic situation, such as a student doing chemotherapy. The inconsistencies and illogic in this statement are mind-boggling.

[/quote]
</p>

<p>The point to make is that the condition is chronic but also episodic. There is no contradiction between the two. Chemotherapy does not happen every day, either!</p>

<p>Then I was not clear. I can find the actual text. But no, they said a "flare" would not be a reason for the reduced course load. I will find the exact wording again. You are right, it is not contradictory to say that something is chronic, but is not present all the time. </p>

<p>About the gifted student leaving the magnet school, that is an awful story and I hate to think of her isolated at home. They should call the Office of Civil Rights at the Fed. Dept. of Education, who can pursue a complaint (they also problem-solve and educate, but it is too late for that).</p>

<p>That said, our daughter had a similar experience and we just withdrew her, because the atmosphere was already toxic after only a week. Due to her health problems (in that case, she was recovering from a surgery, was past the supposed recovery time at the start of school, and was going to be alright in a couple of week) a very good private arts school told her that she was "not up to the rigors of their program," and should probably get out of music. This was funny, because she had been admitted with a huge merit scholarship from the music department, and her achievements so far had been in a year when she was worse off than the one she was in at the time.</p>

<p>They obstructed every little thing: the chef got mad about making grilled chicken without butter or breading, the dorm person was uncomfortable with diabetes, etc.etc. as well as making comments about the general situation that were upsetting.</p>

<p>We did withdraw her, and they refunded all of our money.</p>

<p>I think, too, that after 14 years of advocating and getting a really, really good situation in the public high school, it was a relief to go back there.</p>

<p>Hiring a lawyer in her 7th grade was enormously helpful, and positive. We only paid $150 to meet with her in her office, and then brought the ideas to the school, telling them that a lawyer gave them to us. After that, teachers filled out a form with work done in class, homework, grades missing, and test/quizzes attached, every single day. The nurse collected them and gave them to us at the end of the day. This way, our daughter could move in and out, go to one class, come home, go back up etc. The only missing thing was class notes, which SPED could not provide contractually, because our daughter was not in SPED. Teachers who had notes, were slow to copy them. With a long absence, the school clerk did it once, but generally our daughter copied them herself, from friends, or I did.</p>

<p>Also, for her emotional life, the school allowed her to go to play rehearsal or play in a concert even if she had missed some classes that day.</p>

<p>A public school at the elementary, middle or high school level that behaves the way that magnet school behaved is just outrageous!</p>

<p>Hopefully, college will be better, and I hope, as things resolve, that this thread is helpful to them!</p>

<p>I started another thread under "504/ADA" with the links that the Office of Civil Rights sent me. Accommodations at a college are much lower than high school, as we all know, but I did not know how bad it really is. In fact, when I asked the OCR person point blank if my kids, with her chronic illnesses, might not be able to go to college, she said that was true. Obviously, I am going to talk to some legal folks.</p>

<p>For now, our daughter is withdrawing (her choice) but meeting with the disabilities office to settle some questions for the future: minimum course load allowed (would have helped avoid this crisis), getting the right info in their letter to professors (about extensions and excuses absences), and the number of semesters allowed to graduate. She will also talk to her department, which we have heard can be extremely helpful. After all that, I plan on meeting with someone higher up about the broader legal and policy issues involved in chronic illness at college. </p>

<p>The rationale for the difference in level of accommodations has always been that high school is compulsory. College is still not compulsory, but it sure is necessary.</p>

<p>I do feel that admissions knew everything about our daughter's conditions, when they admitted her: we did full disclosure of her problems, and of how she got through high school with certain accommodations. I would think that her admission would constitute some sort of contract.</p>

<p>The school may want her "genius" (her recommendations used that word) but of course, many gifted artists, composers, and writers have had health problems. What would they have done for Beethoven, who, once deaf, would not have been "qualified" to take music history because he could not listen to the tapes?</p>

<p>But our daughter's school has been completely vetted by OCR, and their procedures are legally proper, and we will depend on their good will in the future, not the law.</p>

<p>ADA/504 at college level
This info was sent to my e-mail directly by the person I spoke with today at the Office of Civil Rights, Federal Dept. of Education. I did not call to complain, but to find out what is reasonable to expect, in terms of college accommodations for "disabilities." The answer was disappointing, and the difference between public high school duties and those of colleges, is substantial. I have, so far, read the one about "10 cases."</p>

<p>OCR documents on 504 and post-secondary education:</p>

<p>OCR Reading Room</p>

<p>OCR Reading Room</p>

<p>Auxiliary Aids and Services for Postsecondary Students with Disabilities</p>

<p>Students with Disabilities Preparing for Postsecondary Education</p>

<p>Dear Parent letter from Assistant Secretary for Civil Rights Stephanie Monroe</p>

<p>Transition of Students With Disabilities To Postsecondary Education: A Guide for High School Educators</p>

<p><a href="http://www.ed.gov/about/offices/list...bharassltr.htm%5B/url%5D"&gt;http://www.ed.gov/about/offices/list...bharassltr.htm&lt;/a&gt;&lt;/p>

<p>US Department of Justice ADA website (DOJ has jurisdiction over private colleges under Title III of the ADA; OCR has jurisdiction over state schools under Title II)</p>

<p>ADA Home Page - ada.gov - Information and Technical Assistance on the Americans with Disabilities Act</p>

<p>Voc Rehab</p>

<p>RSA: Frequently Asked Questions About RSA</p>

<p>Court cases addressing alterations in essential elements of a college's academic program:</p>

<p>Southeastern Community College v Davis (US Supreme Court)</p>

<p>Wynne v Tufts University School of Medicine</p>

<p>Guckenberger v. Boston University (also on reevaluation requirements)</p>

<p>SOUTHEASTERN COMMUNITY COLLEGE v. DAVIS, 442 U.S. 397 (1979)</p>

<p><a href="http://www.onthejobsolutions.com/Wyn...20Medicine.htm%5B/url%5D"&gt;http://www.onthejobsolutions.com/Wyn...20Medicine.htm&lt;/a&gt;&lt;/p>

<p>Disability Support Services</p>

<p>Emory University Faculty Resources for Disabilities - ADA Law</p>

<p><a href="http://www.nacua.org/documents/Gucke..._v_BostonU.txt%5B/url%5D"&gt;http://www.nacua.org/documents/Gucke..._v_BostonU.txt&lt;/a&gt;&lt;/p>

<p><a href="http://disability.law.uiowa.edu/lhpd...stice33-58.pdf%5B/url%5D"&gt;http://disability.law.uiowa.edu/lhpd...stice33-58.pdf&lt;/a&gt;&lt;/p>

<p>Also, FYI, this is the professional disability service providers organization which has a useful search engine</p>

<p>Welcome to AHEAD! | AHEAD: Association on Higher Education And Disability</p>

<p>Mass Rehab Commission ADHD/LD Task force Learning Disabilities and Attention Deficit Hyperactivity Disorder (LD/ADHD) Task Force</p>

<p>The Mentally Ill and Access to Higher Education: A Review of Trends, Implications,and Future Possibilities for The Americans With Disabilities Act and The Rehabilitation Act</p>

<p><a href="http://www.adaptiveenvironments.org/...pring_2008.doc%5B/url%5D"&gt;http://www.adaptiveenvironments.org/...pring_2008.doc&lt;/a&gt;&lt;/p>

<p><a href="http://www.cfnc.org/static/pdf/home/...ransitions.pdf%5B/url%5D"&gt;http://www.cfnc.org/static/pdf/home/...ransitions.pdf&lt;/a&gt;&lt;/p>

<p>Education Discrimination Materials - Advocacy & Legal Resources - American Diabetes Association</p>

<p><a href="http://www.naspa.org/kc/dckc/NASPA%2...20Nov%2008.pdf%5B/url%5D"&gt;http://www.naspa.org/kc/dckc/NASPA%2...20Nov%2008.pdf&lt;/a&gt;&lt;/p>

<p>The Family Village - Transition & The Internet</p>

<p>www1.cenmi.org/tspmi/downloads/Resources.pdf</p>

<p><a href="http://www.fcsn.org/pti/topics/transition/websites.doc%5B/url%5D"&gt;www.fcsn.org/pti/topics/transition/websites.doc&lt;/a&gt;&lt;/p>

<p><a href="http://www.pacer.org/pride/504.htm%5B/url%5D"&gt;http://www.pacer.org/pride/504.htm&lt;/a&gt;&lt;/p>

<p>ADA Q & A: Section 504 & Postsecondary Education</p>

<p>A D A Audio Conference Series</p>

<p>Four fact sheets from the US Department of Labor</p>

<p>The Why, When, What, and How of Disclosure in an Academic Setting, After High School</p>

<p><a href="http://www.dol.gov/odep/pubs/fact/wwwh.htm%3E"&gt;http://www.dol.gov/odep/pubs/fact/wwwh.htm&gt;&lt;/a&gt;&lt;/p>

<p>Youth, Disclosure, and the Workplace: Why, When, What, and How</p>

<p>ODEP - Youth, Disclosure, and the Workplace</p>

<p>Advising Youth with Disabilities on Disclosure: Tips for Service Providers</p>

<p>ODEP - Advising Youth with Disabilities on Disclosure</p>

<p>Entering the World of Work: What Youth with Mental Health Needs Should Know about Accommodations</p>

<p>ODEP - Accommodations</p>

<p>A complaint may be filed online at the OCR website</p>

<p><a href="http://www.ed.gov/about/offices/list...ocs/howto.html%5B/url%5D"&gt;http://www.ed.gov/about/offices/list...ocs/howto.html&lt;/a>
or with the WORD forms attached.</p>

<p>DD's roommate in her university/conservatory program has chronic health issues with flare ups. Much like mezzomom's DD, she has assistance from the disability office in "running interference" with the profs. DD is her buddy for assignments when she can't get to class. They live in an apt. now so that she can fix/eat her special diet without dorm issues. She has a standing letter that covers her, does not need one for each flare up, and it is renewed each semester with letters from the disability office to the profs. She does not have to reduce her class load to such a low level because the various accommodations allow her to keep up the work overall, even if in a different fashion. Continue to work with the disabilities office. They are really the only place that can piece it all together. Most other places in the university haven't a clue.</p>

<p>That's good to hear, and very heartening, especially in a conservatory program. Your daughter also sounds like a great friend.</p>

<p>What that school is doing, and others are doing, is completely voluntary however, according to OCR. The schools can have an attendance requirement, they can say that the medical problems make the student no longer "qualified," they can say that things are "administratively" difficult, and so on.</p>

<p>Unfortunately, the disabilities office seems not to have the same methods as I am reading about at other schools: at my daughter's school, it seems more geared to "structural access" issues. The letter to prof.'s did not contain any of the accommodations asked for by MD's (and my daughter just never got over to advocate more for herself, because she was well, and busy- so now she has learned). Also, they have a fragmented system where another office (dean) deals with absences and extensions, and the disabilities office needs to find a way to deal with them in a situation like this. Sorry if I am repeating myself.</p>

<p>There should either be a cover-all letter, or a single person to contact for help, and I am hoping this can be addressed over the next months.</p>

<p>OCR told me about the buddy system idea. Was this organized by the girls themselves, or did the prof. ask? Apartment living also good idea, though expensive. Our daughter's room and board are covered by financial aid. At our daughter's school, food services people are amazing in providing for allergies, diabetes, etc. Really tops. Met with her before school, with director and chef there, very warm and welcoming, wonderful</p>

<p>If things had been properly in place for academics, I agree that things might have been better now, without a need to reduce courses, but I think we can make sure they are in place for the fall, now that we/she know(s). </p>

<p>Thinking longer-term, I think that my daughter can make this all work out. There are, I"m sure, good intentions on all side, just a need for more interaction that is worthwhile and informed. </p>

<p>Right now her pain is bad, so maybe it is all working out for the best, while she tries to find the right treatment for what is going on.</p>

<p>
[quote]
and my daughter just never got over to advocate more for herself

[/quote]

This is key. The disability office cannot do much without your daughter knowing how to advocate for herself. A skill my own DD had to learn and so did her roommate. DD and her roommate each reviewed the requirements for their own letters in person at the office before they were prepared for the profs. They helped develop their own solutions, including buddies, but the disability office also volunteered to arrange for it if they wanted. And it could be done anonymously with notes taken and turned into a neutral place. . . They did have choices as to how the info was communicated, what level of privacy they wanted, etc. For a couple of her classes DD has no issues, so she never gave the prof the letter. For others, it has taken several 1x1 sessions in the prof's office to work out a plan. But she had to arrange them and work on it. </p>

<p>This process at her school may be voluntary, I'm not sure, but it is nothing without the student learning how to be a self advocate. The office does not go out looking for them, they have to take that first step. They need to understand their own situations and what they really need to succeed. They have to ask for it. It is a skill they will need throughout life.</p>

<p>My daughter did advocate for herself, and met with the disabilities office 3 times, I think. I am not saying that she did not advocate for herself, only that she did not have the letter changed. Sorry to be unclear. Ultimately, she was told that the disabilities office does not handle academic extensions and so on, but another talk with the office could have let her know that earlier. That was the wrench in the system.</p>

<p>I rewrote my post in more positive terms, and it timed out somehow. I am done with this, but want to say that people at the school have been individually wonderful overall, including the disabilities office and dean, the professors and TA's (who have met with our daughter after she e-mailed them,another way in which she advocated for herself), and food services (with whom she also met). </p>

<p>There are some problems with the way things are structured, and yes, it takes awhile for an 18 year-old in transition to learn exactly how squeaky a wheel to be, especially for one who likes to take care of things herself.</p>

<p>I posted the OCR links for others so they can better understand the difference between college and high school. We knew about this in theory, but I think overall our expectations were not realistic, and now we know.</p>

<p>The links are good. College is different. A good message for others is that understanding that difference and being pro-active and early with what you need works best. There are limits to what the disabilities office can do at some point if things have gone off track. </p>

<p>It is hard compmom and it is hard to be far away while they are learning the right balance. She will be better at it when she goes back. She can also take back with her what works when she is home getting better again. It will make it easier for her to articulate what she needs to help prevent the same occurrence. DD's roommate had to come up with a way that worked for her and the profs to still manage the work even when she was missing classes. It took a few tries.</p>

<p>Sending best thoughts your way for her speedy recovery.</p>

<p>Compmom, thank you for your update. I think, under the circumstances, your daughter's choice to withdraw for now makes sense; it will also give you all time to prepare a plan for her return with full knowledge as to how best to make the system work for her needs. My heart aches a bit for these young people...while they may be learning necessary life skills, it saddens me that they must do this while coping with the burdens of their illnesses. Services offered by any disabilities office must by necessity be broad enough to accomodate a range of illnesses/circumstances, but I do hope your ongoing conversations will enable a more coordinated response for your daughter upon her return.</p>

<p>I've been heartened this quarter by the response from my daughter's disability office, but I'm well aware that it's probably the exception rather than the rule. Her professors have also been just incredible; one professor is willing to suspend her written homework and quizzes (she's essentially lost use of her right [dominant] hand over the course of the quarter) and just complete her coursework with a two-hour oral final. Her Arabic professor has enlisted other students to write out her Arabic responses and will give her an incomplete in the class, so she can complete her homework assignments over spring break (and even suggested she enlist a family member to do the writing for her if her hand does not improve...I'm hoping she doesn't have to rely on that option since that means me!) And we're probably going to go ahead and buy the voice-recognition software that was recommended. She hasn't wanted it in the past, since she tends to think things through while writing, rather than dictating, but I want her to have it available, especially with the possibility of grad school in her future.</p>

<p>Most of all, {{{hugs}}} to you. I know what an emotional roller-coaster this can be, and finding the balance between being strong and supportive, encouraging independence and self-advocacy, and not rushing in to "fix" everything can be a challenge when all you want to do is make things "better." It sounds like you've found that balance, but if you're at all like me, I also know that maintaining that balance is a constant effort.</p>

<p>Thanks mezzomom and good luck to your daughter.</p>

<p>I just want to emphasize with everyone that the problem is not in my daughter's inexperience with advocacy. She did a fine job. She met with the disabilities office 3 times. We/she provided MD letters with all the accommodations that would have helped (there were quite a few, and losing use of her right arm is actually one of the things that happens, but for a week at a time only, but we can sympathize with your daughter mezzomom). Our daughter also met with the dean, we wrote a letter, and she met with dining services. We also wrote something for the dorm RA about diabetes. And she has contacted professors after each missed class, and arranged meetings with them. I think that is plenty for a kid her age, new on campus.</p>

<p>Our daughter could not have been more proactive and thorough, with the exception that she did not go back to the disabilities office about the letter to the professors, but that was also because, when she asked them why accommodations listed by MD's were not on the letter, she was told that another department (the dean's office) handled academic accommodations such as extensions, and that they were also at the professors' discretion. There is really no way she could have challenged this, at 18, and even I would not be able to challenge things at that level- it needs to go higher up.</p>

<p>So, I feel that our daughter was skilled and articulate, but the response was confusing, fragmented and inadequate. In other words, to noone in particular, let's not blame the victim here,and I regret that one sentence fragment that was badly written, and said she needed to go back and do more. She hit a wall, and there was not much else she could have done.</p>

<p>When I read about the accommodations others have, such as your daughter, mezzomom, I again wonder if she should be taking a leave. The use of incompletes, for instance, could make a big difference. How can we know what to ask for, when noone is telling us about any of these things ?</p>

<p>She has missed 4 classes total, due to ER trips and illness. Until yesterday, she was actually pretty caught up. It's just hard for her to burden the professors with further meetings to catch up, and she feels the stress of the whole thing. </p>

<p>She's a survivor and is already able to have a positive take on leaving, but after reading this before bed, I am again unsure. It is hard to contemplate copying others' responses with accommodations described, and giving it to them- that is kind of confrontative, but they really don't seem to know about strategies for helping a kid like this.</p>