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Medical Forum / Diseases and Disorders / Epilepsy / October 2003Sheltered and supported employment
HI everyone, I do volunteer work for the regional vocational epilepsy center in Seattle and I was asked to come up with some research about the percentage of people who are afflicted with epilepsy who are in some form of sheltered employment, as to how many are in a supported work environment. IS there any information on line that discusses that? Or, if not can someone set me straight about what is out there concerning sheltered workshops and Epilepsy. My Thanks in advance. Sincerely, Cassie Howdy Cassie! I think that you probably have an impossible mission. To get a percentage you have to sample a broad, non-skewed sample. I bet a lot of epileptics who work at full time, permanant jobs wouldn't dare admit the fact that they have epilepsy. That means that your analysis will be faulty. If you use responses from this group, your sample is limited to people who post here. Most of us have TLE, have computers and post. There are a LOT of lurkers out there. Doesn't sound like a random sampling to me!  SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > HI everyone, > [quoted text clipped - 11 lines] > > Cassie Hi Cassie, I created my own "supported environment" by quitting my full-time job as an Office Manager for an engineering company and choosing to do a variety of things. I volunteer for the Epilepsy Foundation of Idaho (design and maintain their website); I have worked through temp agencies doing office work; and I design websites with the help of my son - a home based small business. I also work as an independent contract worker, presently working with an attorney when they need help. All of these things make it possible for me to work when I want and rest when I need. I have been offered many full-time positions, but I prefer to work for myself. I also have an 83 year old mother who has more doctors than friends. Since I am the one in charge of her medical needs, I like having the independence to get her to the doctor when needed. Because of my epilepsy, I don't drive when I don't feel well, so there have been times when I've had to call her doctor and explain that we need to change her appointment. Take care, Julie, volunteer Webmaster Epilepsy Foundation of Idaho http://www.epilepsyidaho.org > HI everyone, > [quoted text clipped - 11 lines] > > Cassie For Julie, and Dave, Thanks for responding. I was unsure whether this post was even posted til a few days ago, but, again thanks for responding. Yes, I was in an imposssible situtation, and the person who asked me to do research on that fact admitted that there wasn't much out there. (He just came back from an international epilepsy conference in Portugal). I guess he got what he was looking for. All the best, Cassie Howdy Julie! For us bachelors and bachelorettes who don't have a spouse with health insurance it's a whole different story. Personally I would LOVE to go back to work but I can't afford it. My pharmacy bills alone are about $700 a month. As soon as an insurence company finds out what my preexisting conditions are, they don't even bother responding to my letters requesting a quote. My field is mostly contract work. If I do contract work I must provide my own insurance. If I work for an agency I don't have the job security that I need with my medical expenses. If the bottom temporarily falls out of the market, you're out on your ear without insurance. I am fairly well covered with Medicare and MedicAid. As soon as I work for a total of 8 months (I already have used up 4 months on a temporary job about 5 years ago) I am dropped like a hot potato from SSD. When I get dropped from SSD, there goes my subsidized housing. SSD allowes to work provided I make less then $300 or $400 month. That amount of money means that I must do peon work that won't prevent the brain rot from setting in. Taking the risk of losing insurance into consideration, about the only thing that I can do is free volunteer work. You're stuck between a rock and a hard place if you don't have another family member with insurance. SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Hi Cassie, I created my own "supported environment" by quitting my > full-time job as an Office Manager for an engineering company and [quoted text clipped - 34 lines] > > > > Cassie >HTML><PRE>Subject: Re: Sheltered and supported employment >From: "Dave ©¿©¬" <dave@_nospam_howdydave.com> [quoted text clipped - 77 lines] > ></PRE></HTML> so, your pharmacy bill is paid by people like me...who work 40 hours a week pay mongo taxes ( My middle income level is taxed alot more than rich people), people like me who pay 200 dollars a month to insure me and my husband ( by your standards this is cheap but who am I to tell you whats cheap... you way is paid by people like me who have epilepsy work full time hard jobs pay their own way and own housing and here you are sitting around on ssi saying you cant afford to work., thats so sick Hey, jump back just a little bit. Dave has more issues than just seizures. If you are only paying $200/month for insurance for the both of you, then consider yourself very lucky. For me, it's cheaper not to have insurance and just hope I remain controlled. Some people can't afford to work, some can't afford not to work. So life isn't fair, neither is the government. You work things out however you can. Lainie > so, your pharmacy bill is paid by people like me...who work 40 hours a week pay > mongo taxes ( My middle income level is taxed alot more than rich people), [quoted text clipped - 3 lines] > way and own housing and here you are sitting around on ssi saying you cant > afford to work., thats so sick >TML><PRE>Subject: Re: Sheltered and supported employment >From: LainieWebb@yahoo.com (Lainie) [quoted text clipped - 22 lines] >> afford to work., thats so sick ></PRE></HTML> how does a person just sit back and collect a check and practically throw it in our faces with that : cant afford to work story... can you walk and talk...than you can work., just like me seizures and other health problems dont prevent people from working...I am proof of that, I cant believe people kick back and relax while I work my a.s off, and I actually wind up paying for it as a taxpayer, I take home $1050 a month after 200 health insurance and taxes are deducted, I am working my a.s off scraping by while some dote gets a free ride whos ep might not even be as severe as mine...there is no justice in this world. Whoa there bucko...I am not a person with epilepsy, and my (middle income America) taxes pay for lots of services for lots of people who can't work because of a legitimate disability. So on a newsgroup dedicated to support of individuals with epilepsy, you take potshots at another. Hmmmm, I can't decide if I need to feel sorry for you that you are ignorant of the fact that each person here, and how they struggle to live their life, is unique and is bound by that uniqueness, or amazed that you are so self-centered that you would write this drivel - or maybe you're just a troll (probably why you didn't sign your, errrr, contribution). Your post was made more memorable by it's very uselessness. Kathie Robinson "Moral indignation is jealousy with a halo." - unknown >>>so, your pharmacy bill is paid by people like me...who work 40 hours a week pay mongo taxes ( My middle income level is taxed alot more than rich people), >>>people like me who pay 200 dollars a month to insure me and my husband ( by [quoted text clipped - 15 lines] >world. > Howdy Nomad! Your post really doesn't warrant a response but I just thought that I'd give you something to think about. Do some arithmatic for me... Start with your monthly take home pay (NET not gross.) Subtract $1,600 per month off of the top: $700 to the pharmacy $300 for doctors visits (a conservative estimate)* $100 for medical equipment rental $ 500 for rent * I see doctors for epilepsy + 5 other conditions. (Let's not forget that with my pre-existing conditions I can't even get insurance to acknowledge my letters, let alone give me a quote for health insurance.) How much does that leave you for food, transportation and cost of living? If you are currently working, are you paying ALL of your medical bills out of your own pocket? If you have insurance, do you pay for your own policy or do you get your insurance through your employer? BTW: I was working for MORE THAN 40 hours a week for quite some time before I was forced to go on disability. (Don't have the luxury of a mere 40 hours a week when you're salaried!) SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com BTW: My profession is about 100% contract work. That means that you don't get any benefits from your employers, you have to provide your own. SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Howdy Nomad! > [quoted text clipped - 27 lines] > I was forced to go on disability. (Don't have the luxury of a mere 40 hours > a week when you're salaried!) >TML><PRE>Subject: Re: Sheltered and supported employment >From: "Dave ©¿©¬" <dave@_nospam_howdydave.com> [quoted text clipped - 45 lines] > ></PRE></HTML> my advice, get a job in a non-contract thingie job like other people and pay a hundred bucks a month for full boat insurance and that saves ya the 1000 for dr visits and pharmacy, then get off the dole. >TML><PRE>Subject: Re: Sheltered and supported employment >From: "Dave ©¿©¬" <dave@_nospam_howdydave.com> [quoted text clipped - 32 lines] >I was forced to go on disability. (Don't have the luxury of a mere 40 hours >a week when you're salaried!) ive been salaried too, and worked my fairshare of OT, you ask about insurance, its about 200 a month for myself and my husband together, thats full medical dental optical, co-pays on scripts $20, insurance pays 90 percent of medical bill patient respons %10. So, I pay only 20 bucks for lamictal good deal, it isnt that hard to find a big company that doesnt have pre-existing clauses to work for, gee my pharmacy bill is 20 bucks, see a doctor once a year, I work my butt off for my 1000-1100 dollars I take home a month and believe me Iwish I could " not afford to work' too, I scrape by, but not on a free ride. If you can walk and talk I believe a person can work and earn a living without a freeride. Howdy Nomad! You didn't do the arithmatic for me! SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > >TML><PRE>Subject: Re: Sheltered and supported employment > >From: "Dave ????" <dave@_nospam_howdydave.com> [quoted text clipped - 22 lines] > > > >How much does that leave you for food, transportation and cost of living? "Dave ©¿©¬" wrote: > Howdy Nomad! > [quoted text clipped - 33 lines] > > http://www.howdydave.com Hi Dave You're welcome to every one of my tax dollars that you need! :-) Bob > >TML><PRE>Subject: Re: Sheltered and supported employment > >From: LainieWebb@yahoo.com (Lainie) [quoted text clipped - 32 lines] > whos ep might not even be as severe as mine...there is no justice in this > world. This is a _support_ group and comments like that don't belong here in my opinion. Put yourself in the other person's shoes and judge not lest ye be judged. Bob Howdy Bob! Better watch yourself there! Somebody might mistake you for Rev. Chuck! (Have you been around long enough to know our good buddy Rev. Chuck?) Anyway, using Nomad's numbers there, it sounds like she is taking home about $1100 a month. That just about covers my pharmacy, medical equipment and (if it's a VERY good month) doctors bills. Nothing is left for food, lodging, transportation or cost of living. n.b.: There is a difference between not being able to work and can't AFFORD to work. SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > This is a _support_ group and comments like that don't belong here in my opinion. > Put yourself in the other person's shoes and judge not lest ye be judged. > > Bob "Dave ©¿©¬" wrote: > Howdy Bob! > > Better watch yourself there! > > Somebody might mistake you for Rev. Chuck! (Have you been around long enough > to know our good buddy Rev. Chuck?) Haven't seen him around for a while! > Anyway, using Nomad's numbers there, it sounds like she is taking home > about $1100 a month. > > That just about covers my pharmacy, medical equipment and (if it's a VERY > good month) doctors bills. Nothing is left for food, lodging, transportation > or cost of living. Your numbers don't work out and that's why I have no rpoblem with tax dollars etc. > n.b.: There is a difference between not being able to work and can't AFFORD > to work. I heard'ja the first time! :-) Bob > -- > Dave ©¿©¬ [quoted text clipped - 7 lines] > > > > Bob Howdy Bob! > > n.b.: There is a difference between not being able to work and can't AFFORD > > to work. > > I heard'ja the first time! :-) I know ya' did... Sometimes I respond to one person and stick words in there for other potential readers. > Bob -- Dave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com >HTML><PRE>Subject: Re: Sheltered and supported employment >From: "Dave ©¿©¬" <dave@_nospam_howdydave.com> [quoted text clipped - 25 lines] > ></PRE></HTML> if you get a regular job with a regular large company like everyone else you wont have to use 1600 on medical bills because guess what... they are paid for by the insurance which will cost 100-200 a month depending on type of ins. Guess what...if you do that...no need to be on the dole, cause then youd have all that money that you saved when you were a self pay, so get a job working for someone else, with insurance, do your contract thingie on the side, off the dole Dear Anonymous (or is nomad205 your real name): do not attempt to speak for others who read this newsgroup. So far, nobody has agreed with you - or didn't you notice that either. Re-read this entire string - for content this time...that you could read the contributions here and still chant the same litany is indicative of your unwillingness to comprehend. You were challenged to do the math. Do the math. Since you have all the answers, please let me know how one would get around that pesky pre-existing condition clause most insurance companies have. And in a cautions economy, when 'regular large companies' are not hiring for 'regular jobs' (maybe because 'everyone else' has a job there already, like you I presume) - how do you propose one accomplishes this. I'm with Bob - people who can't work because of circumstances surrounding their disability are welcome to my tax dollars. That is not my definition of 'being on the dole'. (A hint: if you want to be taken seriously, have the guts to post your name.) Kathie >if you get a regular job with a regular large company like everyone else you >wont have to use 1600 on medical bills because guess what... they are paid for [quoted text clipped - 4 lines] >dole > >HTML><PRE>Subject: Re: Sheltered and supported employment >From: Kathie Robinson <robinska@muohio.edu> [quoted text clipped - 111 lines] > ></PRE></HTML> my name is jill I have epilepsy for 23 years, grand mal now control -didnt used to be, full time workforce since I was 18- 15 years ago, I have always had jobs with Insurance, pre-exist is 1 year...but..inmost all companies...if you have had insurance in the last 52 ( or 62 I cant remember) days they waive the pre-exist..even Aetna my company said even though I didnt have 52 days they would review my claims and pay them on a caser by case basis. for that year they paid my dr visits, tests, and I used Glaxo-welcome to pay for my presciption based on my income level, ( most all companies do that for people working who do not have insurance or revieve any type of welfare or disability-- because Lamictal costs 400 I feel they can afford a few charity cases like me for a year based on what they rake in) anyways Aetna pays for all my costs Ive always had epilepsy and always worked full time and always made enough to support myself even though its not alot of money its my money, and Ive always had my own insurance, with only a 1 year lapse while waiting for a pre-exist, but hey... I paid my own way. Dont expect you to like me, or what I say, you might even think I am jealous of people who dont work, I dont have seizures lately but ohh I so miss having a nocturnal grand-mal and having to be to work in 3 hours couldnt call in sick cause I was the store manager and no-one else could open the store...ohhh I so do miss that, I am so happy for those who went to task and fought to stay home and skip the whole work thing. Jill, I'm a little confused by your response, but at least now we all know your name. Dave, you are welcome to my tax dollars also. Let's see help Dave live one more day --- or --- buy a $500,000.00 lug wrench for the armed services. Even my brain can figure that one out. Julie > >HTML><PRE>Subject: Re: Sheltered and supported employment > >From: Kathie Robinson <robinska@muohio.edu> [quoted text clipped - 131 lines] > no-one else could open the store...ohhh I so do miss that, I am so happy for > those who went to task and fought to stay home and skip the whole work thing. > Jill, I'm a little confused by your response, but at least now we all know your > name. [quoted text clipped - 4 lines] > > Julie g'day julie, i reckon a half pound box of whitmans classics would be a better investment ;) pablo > > >HTML><PRE>Subject: Re: Sheltered and supported employment > > >From: Kathie Robinson <robinska@muohio.edu> [quoted text clipped - 131 lines] > > no-one else could open the store...ohhh I so do miss that, I am so happy for > > those who went to task and fought to stay home and skip the whole work thing. > <snip> > my name is jill I have epilepsy for 23 years, grand mal now control -didnt used > to be, full time workforce since I was 18- 15 years ago, Hi Jill You deserve a lot of credit for working full-time as you have been. It can be a source of much personal pride & satisfaction. At the same time, you can feel fortunate that you have found employers who had jobs openings that matched your talents & qualifications and were willing to hire people with epilepsy. That's, unfortunately, not true of all employers and job-types. > I have always had jobs > with Insurance, pre-exist is 1 year...but..inmost all companies...if you have [quoted text clipped - 6 lines] > disability-- because Lamictal costs 400 I feel they can afford a few charity > cases like me for a year based on what they rake in) But they rake it in from the people who pay the insurance premiums. :-) The more they pay out for people such as yourself, the more they have to charge in premiums for everybody. How is that different than taxes? > anyways Aetna pays for all > my costs Ive always had epilepsy and always worked full time and always made > enough to support myself even though its not alot of money its my money, and > Ive always had my own insurance, with only a 1 year lapse while waiting for a > pre-exist, but hey... I paid my own way. Except for the part that the premium payers (taxpayers?) were paying. > Dont expect you to like me, or what I > say, you might even think I am jealous of people who dont work, I dont have > seizures lately but ohh I so miss having a nocturnal grand-mal and having to be > to work in 3 hours couldnt call in sick cause I was the store manager and > no-one else could open the store...ohhh I so do miss that, I am so happy for > those who went to task and fought to stay home and skip the whole work thing. He said he was ready & willing to work! It's only that some pretty harsh numbers stand in the way. Best wishes to you and please always try to understand the other person's dilemna. Bob Howdy Bob! Well... actually I AM working... Only problem is... although I can (and do) work I can't afford to do anything other than volunteer work. I work with the SSC, Inc. (South Sudanese Community), an organization that assists refugees here in Rochester from Southern Sudan. (Get to brush up on my Arabic that way too!) Geez'... some of the people who come here don't even know what MONEY is 'cuz they use the barter system. SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > > <snip> > > my name is jill I have epilepsy for 23 years, grand mal now control -didnt used [quoted text clipped - 45 lines] > > Bob "Dave ©¿©¬" wrote: > Howdy Bob! Alikem salaam! :-) > Well... actually I AM working... > [quoted text clipped - 3 lines] > I work with the SSC, Inc. (South Sudanese Community), an organization that > assists refugees here in Rochester from Southern Sudan. Good for you! Volunteer work counts too! > (Get to brush up on > my Arabic that way too!) Ma salaama? :-) > Geez'... some of the people who come here don't > even know what MONEY is 'cuz they use the barter system. Heh heh!<g> Very clever of them. Bob > Dave ©¿©¬ > "Noli illigitemi carborundum decendus" [quoted text clipped - 73 lines] > > > > Bob Wa alikem a' salaam Bob! Ante tarrof arabi? For everybody else, just say: Anna muta assif, anna ma a'arof arabi! SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > > Howdy Bob! > [quoted text clipped - 85 lines] > > > > > > Bob "Dave ©¿©¬" wrote: > Wa alikem a' salaam Bob! shukran. al-hamdu li-lâh. wa ant? > Ante tarrof arabi? la :-) > For everybody else, just say: > > Anna muta assif, anna ma a'arof arabi! shukran! ma'assalama ;-) Bob > Dave ©¿©¬ > "Noli illigitemi carborundum decendus" [quoted text clipped - 112 lines] > > > > > > > > Bob Howdy Bob! That's ok, I really don't either. I've forgotten just about everything that I learned about 10 years ago. lailakhum bel kkher! SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > > Wa alikem a' salaam Bob! > [quoted text clipped - 34 lines] > > > > > > > > http://www.howdydave.com
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