Disability Info

Always looking for the best information, or accommodations tips for work or school! Let me know, I'll add it in! narcolepsy_indiana@insightbb.com or k.heeter@insightbb.com thanks! http://www.talkaboutsleep.com/ has the best detailed disability info I've found. But here are some personal ones.

High School/College accommodations

High School Councilors, and the Disability Office of the college can offer a lot of accommodations. Let them know what would help you. Educate them on Narcolepsy, what it is, what it does to you, and what would help you succeed. Tell your professors too! Some ideas are....testing separately at the proctor's office where you can get up and walk around, get a drink at the water fountain. No time limits/ extended time limits. I have problems with fluorescent lighting, I need a place with windows and sunlight or incandescent lighting. A tape recorder for lectures in case you fall asleep, or you need to get up and walk around a minute. Someone to help study with. If you do well with these accommodations most will not fuss over giving them to you, you're trying to compensate, not get away with something! I compensate by becoming interactive. I didn't know about Narcolepsy at the time, I just told them I had problems concentrating on things unless I could make comments and interact. Most teachers liked that. I also doodled with my notes about things that were pertinent to the lecture if I could not interact. Other students would look on me as a teachers pet, or want to be, but I went from C-D's to A-B's when the EDS started to hit in Middle School by adapting this way. Good thing I'm outgoing anyway! I just learned I think a little differently and when I asked questions and commented I was adjusting my thinking to the teacher, and I retained more information.

Student Loans (USA)

Here is a copy of the email I received from US Dept of Education concerning work and the repayment of student loans that were discharged due to disability. My husband also works with Sallie Mae and can answers many questions especially if your loans are at least overseen by Sallie Mae (many companies hire Sallie Mae to keep track of their loans, even if Sallie Mae is not the guarantor of the loans originally). Write me personally with any questions and I'll see if he can answer them. k.heeter@insightbb.com (my comments are in blue in parenthesis)

E-Mail Unit
Federal Student Aid
US Department of Education

Thank you for your additional inquiry about federal student aid.

As previously stated, the US Department of Education (ED) administers three major student loan programs: Federal Perkins Loans (formerly National Direct Student Loans [NDSLs]), Federal Family Education Loans (FFELs), and William D Ford Federal Direct Loans (Direct Loans). The FFEL Program comprises FFEL Stafford Loans, FFEL PLUS Loans, and FFEL Consolidation Loans. The Direct Loan Program comprises Direct Stafford Loans, Direct PLUS Loans, and Direct Consolidation Loans.

Your loans (my personal ones) have been canceled due to total and permanent disability. A borrower whose ED loan account is canceled on or before June 30, 2001 (as my account was) under the total and permanent disability cancellation provision is not required to reaffirm the previously canceled debt. In other words, you are not legally responsible for making a payment on the loan or for signing a new promissory note or repayment schedule if you return to school and again receive federal student loans. In addition, you are not responsible for repayment of the loan account even though you might return to gainful employment (part time or even full time again).

A borrower whose ED loan account is canceled under this provision on or after July 1st, 2001 but before July 1, 2002, however, must reaffirm the previously discharged loan(s) if the borrower receives another ED loan within three years after the date the borrower became totally and permanently disabled, as certified by the physician. As you are aware, this means that a borrower will have to repay (reaffirm) the loan account if the borrower returns to school and again receives federal student loans. In addition, the borrower is not responsible for repayment of the loan account once his or her loans have been discharged, even though the borrower might return to gainful employment.

After July 1, 2002, a borrower who is determined to be totally and permanently disabled will have his or her loan conditionally canceled for a period of up to three years from the date the borrower became totally and permanently disabled. During the conditional cancellation period, the borrower is not required to make any payments of principal or interest on the loan beginning on the date the borrower was initially determined to be totally and permanently disabled. In addition, the borrower is not considered to be delinquent or in default on the loan unless the loan was delinquent or in default at the time the conditional cancellation was granted.

If a borrower continues to meet the eligibility requirements for total and permanent disability cancellation during and at the end of the three year conditional period, the borrower's obligation to repay the loan(s) is canceled. A borrower meets the eligibility requirements for loan cancellation if, during the end of the three year conditional period, the borrower does not have annual earnings from employment that exceed 100 percent of the poverty line for a family of two and does not receive a new loan under the Federal Perkins Loan, FFEL or Direct Loan Program (except for a FFEL or Direct Consolidation Loan that does not include any loan that is in a conditional cancellation status).

If a borrower does not continue to meet the eligibility requirements for loan cancellation at any time during or at the end of the three year period, the borrower must resume repayment. The borrower is not required to pay any interest that accrued on the loan from the date of the initial determination of total and permanent disability through the end of the conditional cancellation period.

For additional information, we suggest that you contact the Federal Student Aid Information Center (FSAIC) at 800-4-FED-AID (800-433-3243). One of our counselors will gladly assist you with your questions.

We hope this information will be helpful. If we may assist you further, please let us know.

E-Mail Unit
Federal Student Aid
US Dept of Education

Social Security Disability (USA)

When dealing with Social Security know the law...this is the appendix they use for listing disabilities.
http://www.ssa.gov/OP_Home/cfr20/404/404-ap09.htm
you have to look for what each symptom would fit under. Like Cataplexy is actually looked at like Epilepsy because of falling spells, frequency and duration and severity. Many people with Narcolepsy also have depression problems because of the circumstances that surround them. But there are other things that can be listed under the mental illness organic.

Recently I found out that while waiting for an ALJ (Administrative Law Judge) (the hearing phase of disability) that if your are in dire straits and are about to be foreclosed on your house, you can contact your local HUD (Housing Urban Development) and they can give you a loan of up to 3 months held against your disability back pay. Also when getting close to foreclosure you can contact your local ALJ hearing office and give them the mortgage notice and they can move up your hearing date! This is very important! Even though they seem to want us to loose everything before we get approved for disability there are some safe measures to insure you don't lose your house! Also many local charities and government offices can help with utility payments and food/clothing while waiting through disability. Remember, you have a disease that you are not in control of. If taking help bothers you, remember what is given and give back when you get your back pay so the money is there to help another person! Don't let everything you've tried to achieve be taken away because you are too proud to receive help! Just replenish to pool when you're done, if you can! Many times we didn't have a good career because of the Narcolepsy and therefore our disability isn't much as a result.

This is my story of winning disability case, without a lawyer (or even my personal doctor recommendation). It took me from Sep of 99 to July of 2001 to win my case and it was Sep of 2001 when I got SSI (supplemental security income) pay but then they deducted that pay from my settlement that I finally received in Nov of 2001. Starting Dec of 2001 I started to receive monthly benefits. You also receive Medicaid Hospital benefits at 3 years, and they WILL take out the supplemental Medicaid B if you do not ask in writing BEFORE the 1st month the benefits start. It's like 40 extra dollars so IF you are covered by a spouse THEN get on it before they start deductions! Also NEVER call the 800 number for an answer to an important question or for them to change something. Most likely it will be wrong or not get done. I know this from experience! Your local administration can handle EVERYTHING and are much nicer (at least in my city).

If your doctor is behind you, and your tests show fairly severe you have a chance on making it on the first submission or even the appeal. 90% are turned away the first time just because you are not at or near age of retirement. If your 1st appeal is rejected you go to the (ALJ) Administrative Law Judge. Before this stage they do not look at several conditions in relation to each other. If they see that it is a treatable condition through medication then it's not counted as a disability. Even if you have several conditions. If each condition is treatable it is not a disability. Even if the treatment of one condition counteracts the other condition, they are not allowed to put them together. When you get to the ALJ hearing they know and read your case before hand. At the hearing it is up to you to prove how this has affected your ability to work. IF you have things diagnosed and the tests are there, and you show them how it affects your daily life and the medications haven't worked then you should get it. Document, document, document. Keep a journal of your EDS/AB/C and how it affects you and your work. How many attacks and their severity. Have parents and bosses, and neighbors and friends write letters of how you have tried to take care of working and what has happened to you, your decline in ability. What they've seen in their own words.

My judge looked like death warmed over when my hearing started. I was scared that I had some crusty judge that wanted to deny everything! I had my parents and neighbors and friends and even my last boss tell what they've seen. Not that I don't want to or try. I'd make plans and be looking forward to them and then back out and miss them because I just couldn't do it, I ended up in bed. I was having problems taking care of my young children to the point that some of my friends that didn't understand the situation were talking about turning me into welfare (before diagnosis and education of them). I felt guilty that I couldn't keep up with other Mom's performances, and it was hard to explain to the kids that I can't do that, or I can't do that right now.

This was the order I told the judge; I told him the expert stuff, all the technical things about what narcolepsy is and what they've found out. (If General Practitioners only get 15 min of education on Narcolepsy in med school, then I doubt if the judge knows anything more than what is in a movie like Duce Bigalow or Rat Race). Then I told him about my education experience. I graduated high school at 16, not a GED I actually graduated through hard work and extra classes to get ahead. That I then supported myself through college while my parents moved overseas. I found it more and more difficult to continue with college and was failing classes and missing classes so I could have the energy to go to work and support myself until I dropped out because I just couldn't do it anymore.

On to the career. I could never hold a decent job because I didn't finish school even though I was paying 300 a month for the loans. I wasn't dependable enough even though I'm very responsible and even that has gone to pot because I never know when my body is going to function or not. I have problems just getting through and remembering things now. So I never got promotions even though well or over qualified because of my attendance/tardiness. I showed that my last employer stood by my side for the last year till he just couldn't cover for me anymore and had to put me on-call only. He wrote a letter for the hearing.

I explained the heartache of trying to get a doctor to understand what I was going through to get a diagnosis. That I was diagnosed as depressed, which I wasn't really at the time but I was becoming depressed because no one would listen to me! That everyone was telling me to loose weight and that would solve my problems but that they have found a link between N and metabolism, that we can eat less and still gain weight. And the fact that we were finding out now that I personally could not do that because the production neurons are most active when you are and I am loosing the ability to use what I produce which is causing problems (re-iterating the educational part I told before). I was part of the spinal fluid study which Stanford did to determine that people with Narcolepsy are losing a production of a neurochemical called Hypocretin/Orexin. My levels were off the chart instead of being non existences. See Technical stuff on narcolepsy for more. I had always been athletic but every year I would look back and see what I could before but not now. My work was physical and I was starting to slow down. My parents backed this up with what they remember of me as a child and teenager and what they've seen when they come to visit. They thought that during my teenage years when I needed more rest that it was normal for a teenager to need a nap or not be able to do as much. I did go to the doctor several times through Jr. high and high school because I had times I was so worn out. We tested for Mono and thyroid problems, always normal. My parents knew something was wrong as I progressed to college and I couldn't keep up. I slowly stopped doing the things I enjoyed like swimming and soccer, as well as canoeing and hiking.

Then i went to the financial aspects. We went for 2 months without water because our well collapsed and we couldn't pay for the city water to be hooked up! My bathroom floor was falling through (my 5 year old son fell half way through it into the crawl space). My septic was overfull. My car was kaput and my husbands car needed work, and I can do nothing to help out because I just couldn't work anymore!

Then I went to the emotional aspects of raising young children and not being able to hardly take care of myself some days let alone truly take care of them. They've grown up as this has been developing so they have adapted although they don't really understand. This is where I lost it and went into a bad C attack but thank God he was helping me from going over the threshold of total wipe out! Crying joy/sorrow is my worst trigger. I was shaking so bad and my speech slowed down and I had problems with keeping on track of where I was going! When I took a moment to calm down so I wouldn't flop over on the desk he stopped me and said "you didn't do anything wrong. You have a disease. I'm going to give my approval for total benefits with back pay and I hope you can now take care of your family financially and I wish you the best." I responded with wanting him to share my educational stuff with the other judges and he said he would. That "he sees now that although many people with Narcolepsy can find medications and a job that can accommodate their needs, there are those others that cannot." I also told him that education is the key to helping those undiagnosed out there. Educating the public that many people develop this in middle school, and college, while trying to finish their education and start a family and career in a world that sees them as lazy. There are medications and accommodations that help the majority of us and if they should be able to get this before they started a career or had kids. I want (and have started) to get the education out there, and having the income to get my car fixed and print the educational materials I can devote a few hours a month to talking to various groups about it. I also said I was hoping to get treatments that would help me take care of my family better when they come out. This is where he ended, restating that he WAS fully approving it and stood up to find his "kit" of approval process stuff as it was his 2nd case of the day and I guess the other one he didn't approve. I asked him if I could give him a big hug, he seemed a little startled by this so I dropped it and just thanked him. I was so excited (which is a stimulant for me thankfully) I went out the wrong door of the building and went out of my way by 3 blocks to find my car! I stopped and got my kids from my sisters and took them to get something to eat because I knew as soon as I got home and the excitement wore off I'd be passed out for hours (my weird combo of C/SP/REM/HH/and quiet wakefulness) and that's just what I did!

I meant to tell the judge about the collection calls that cause me severe Cataplexy. When I was still trying to work part time I would get a phone call right when I was getting up and the kids ready and trying to get to work and I would just loose it. I would end up in my combo of C/SP/REM/HH/and quiet wakefulness and it would cause me problems with work and my sons school (he was in afternoon kindergarten) they almost reported me because he missed or was late so often until I finally gave up/was forced to go on call basis for work. I meant to tell the judge this because it really has affected my functional life. I no longer answer calls that I don't know or comes up as unavailable because I just don't want to explain to them, I just tell them that I will call THEM when I have the money to pay for them and that's that. Don't start in on me or I'll hang up because I'm starting to loose control over my muscles and I will not be able to respond to you. We told several places that they had to deal with my husband only and he was home in the afternoons on Friday and no other time that they would be able to call. I had physical problems and they had to respect that I couldn't help them.

Read My Story and Technical Stuff for the rest.

Work Accommodations

You have to understand that no matter how clearly defined your disabilities are, if they don't want to accommodate you, they will find another way to get rid of you! Please, document, document, document, everything that is said, what/when/where/how/why/by who, and get things in writing that are agreed upon. A new manager will not remember what another said and you will have to start over. If you work hard and can do your job, most employer's will accommodate you, but you have to prove your disability. If you can BEFORE you are hired to see their doctor, you can inform them what you are taking, how well you have things under control and get an approval from the doctor. If you work several years with no problems and then suddenly develop more, then you have backing from the doctor. If you are diagnosed after working there, but had a good history with them until symptoms developed they also SHOULD be more understanding on giving you accommodations. It all depends on how good you are in your work and how much they like you and are willing and able to accommodate for you. If the job itself is not flexible you can't ask them to be either. You can ask for a good letter for disability from your boss of what you were like and what you have done to try to fit and what you are like now.

You need Adobe Acrobat reader for these...http://www.adobe.com/products/acrobat/readstep2.html
You can also look at http://www.eeoc.gov

http://home.insightbb.com/~narcolepsy_indiana/ADAOVRNO.pdf

http://home.insightbb.com/~narcolepsy_indiana/BRIEF_RIGHTS_and_Responsibilities__ADA.pdf

http://home.insightbb.com/~narcolepsy_indiana/Reasonable_Accommodation_Overview.pdf

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