Caregivers , working and diapers

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CPDude

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  1. Adult Baby
  2. Incontinent
Does anyone else use paid caregivers to help them manage full incontinence (bowel and bladder) and also work? I have found that many employers are uncomfortable with the fact I need caregivers throughout the day while at work. I have been unemployed for a while and maintaining employment has been hard.
 
Everyone I know with a disability is having trouble getting and maintaining a job , as one friend quipped "they want the Sun, the moon, the stars , and a telescope for there pathetic job" employers have tunnel vision many times of "what there perfect employee is going to be" and in many caees will pass over a worker with a disability , because they don't meet that image, in other cases they give the stupidest reasons a friend of mine uses arm canes and has been told you "wobble too much" thats a liability come back and reapply when you get a nice safe wheelchair, unfortunately in many cases we have to put up with that kind of thing because ADA has been so watered down over the years , that bringing an action with it is near impossible, most vultures don't want to take a case that's not easy money, open and shut ,and the ADA now has big holes in it from different adminstrations creating èxcemptions and exceptions for there specisl intrest big money donors , and with this new trump stuff more holes are going to be poked in it .People wonder why many people with a disability don't work , the should look in the mirror, people like them overlook us , because we don't look like them , is what it boils down to .

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The unemployment or under employment eat among blind/ visually impaired people is like 70% and it's been that way for like 30 yrs and hasn't changed much. I only work part time like 12 hrs a week but even doing 20-25 hrs a week is still considered underemployed so I'm in that 70%. Not much financial help for the blind and what there is, usually is related to finding work. I'm sure life will become a lot harder for people with disablities under trump.
 
I've been lucky in this regard. I'm disabled military, so I was able to find a job where that was seen as bonus in filling a "minority" position. Though I also live in a military friendly town, so that helped too.
 
I'm disabled and work at Walmart. I can only work 3 hours though and have a job coach with me everywhere I go. If it wasn't for the career center in my town I would still be unemployed.
 
If you look up the FLSA & NRA legislation that also allows people with disabilities to be paid less than minimum wage , it's fascinating to read why the President signed it into law at all, and his warnings to the future about it , show just how brilliant a man FDR was and is,and also shows why we need some politicians with a spine , there are all kinds of incentive programs periodically to both employers and the disabled , that are really half heated attempts (especially because those programs are farmed out to private companies , who are paid regardless of the effectiveness of the program) I get my phone blown up periodically by these programs and i let the people calling know what a scam this is ( because most of them boil down to the "ticket to work" program ,and when i ivestigated working four hours a week , i found out that program was garbage ,by working 4 hours a week ,i would lose all of health care benefits immediately , just my medications are north of $1750 add catheters and diapers and your north of $5000 dollars ) so why on earth do they keep calling the same disabled people who can not return to work ? Because we are easy targets for creating a paper trail, that they tried ! If these programs were pay for performance , they would not continuously run through the list of people on compassionate social security disability, they would be wasting resources that could be used to gain employment or better employment for the disabled that can work and want to work ,as far as low or no vision employment it is an uphill battle my best friend was blind and she had to waste 4 years trying to convince people that a blind person could do the work and achieve a master's degree once she was finally allowed she aced her work and earned her master's in social work, she was never able to get a job with her master's degree , because the invisible wall against the visual impaired is monumental even with a master's degree .If people would lay aside there bias and give the disabled a chance to do the job that there bias says they can't do it would be a great day .

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90% of us Autistic adults are unemployed.
We are seen as "too difficult to work with".
In my daily outings I see that places like WALMART will only employ a couple token disabled adults, just to say they hire the handicapped.
My own experiences with employment have been difficult.
None of my employers made any accomodations to my disabilities of Asperger's Syndrome and Mild Cerebral Palsy.
My own experience is that employers really loath and look down upon disabled adults who are incontinent.
It is like, we do not want to see your dirty adult diapers in our bathroom's trash bin.
Sad, but true.


 
I had 42 interviews and no job offers.

I then got a job that lasted 6 months. I got the job because the CEO of the agency that provides my care knew the owner.

I tried my best, showed up every day and was never a problem. The job was boring and I was let go on a training day for a issue that should have been dealt with using training.

I don't have the energy for dozens of more interviews. And your right, ticket to work did nothing. Employers didn't honor it.
 
CPDude said:
I had 42 interviews and no job offers.

I then got a job that lasted 6 months. I got the job because the CEO of the agency that provides my care knew the owner.

I tried my best, showed up every day and was never a problem. The job was boring and I was let go on a training day for a issue that should have been dealt with using training.

I don't have the energy for dozens of more interviews. And your right, ticket to work did nothing. Employers didn't honor it.

​"Ticket to Work" is a joke here in New Hampshire where I live.
 
I am not disabled except for my severe bowel urgency IC. I owned my own company so nobody could fire me or let me go. I didn't become IC until 20 plus years ago after a surgery. I consider any IC where diaper are needed to be a disability. But it is one of the few disabilities that one can still work with. Those that are blind or in a wheel chair face an uphill battle unless you have really good skills with education behind you. I started my company before I became IC so I was well established in the business with a steady flow of old and new clients. It wasn't easy after my surgery and subsequent IC but I managed and to my knowledge, no client had a clue. So in effect, nobody saw me as disabled. My heart goes out to all disabled people who want to work and know they can do the job. There is no doubt in my mind that there is blatant discrimination. I'm not sure what the answer is. The politicians won't listen unless you have a strong lobbying partner who can put $ in their reelection campaigns. I suggest that those that are able to become involved politically. Tammy Duckworth here in Illinois is our new senator. Double amputee. Demacrat with a soul. Research your district/state and find the canidates that are on your side. Rep or Dem, doesn't matter if they are aware of the inequities in the system.
 
Well I walk with crutches, or use a wheelchair, wear diapers, and I have a caregiver with me 12 hours a day. So regardless of my skills and knowledge, I am convinced I scare employers off because I am not like them. That has been my experience. I have faced discrimination, but I lack the evidence to prove it legally. One employer handed me a check for $10,000 and asked me to leave and drove me home back in 2002. This was the day he fired me.
 
And that is why I never disclosed my incontinence with my (now) current employer. That, and I truly belive it has NO impact on my ability to do my job, hence they do not need to know.
 
I'll be honest, an employee who needs a caregiver with them while at work, should probably not be in the workforce... I'm picturing somebody who needs help toileting, feeding, basic care for themselves.

Granted I've worked with blind people, and they had seeing eye dogs and assistance was given when navigating places like the cafeteria and when there is a building evacuation, etc

I had a coworker who had seizures and those of us who sat near her knew what to do if she were to need assistance

Most employers are willing to make reasonable accommodations for employees (special desks and chairs, larger monitors, motorized scooters to allow the employee to navigate a large building, assistance in the cafeteria carrying trays, etc)

There are some jobs that require certain skills. For instance to work for my small business you must be able to lift 50+ lbs, must be able to drive, must be able to stand for long periods of time, must be able to work outdoors in the heat, must be available weekends all day. My business is a DJ, photo booth service


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I never told my employer I was ic but you can't hide dirty diapers forever in the trash. I have a bachelors in computer science and a masters in teaching along with some older Microsoft certifications. I did work as a programmer for 4 years before I was fired and given 10k. I have not been able to find steady employment since
 
caitianx said:
90% of us Autistic adults are unemployed.
We are seen as "too difficult to work with".
In my daily outings I see that places like WALMART will only employ a couple token disabled adults, just to say they hire the handicapped.
My own experiences with employment have been difficult.
None of my employers made any accomodations to my disabilities of Asperger's Syndrome and Mild Cerebral Palsy.
My own experience is that employers really loath and look down upon disabled adults who are incontinent.
It is like, we do not want to see your dirty adult diapers in our bathroom's trash bin.
Sad, but true.



Yeah I fall into that 90% as well, I was on a temp job and did very well with it as it was in the range of one of my main narrow set of abilities but when that 9 months ran out they offered full time work in other areas but it ended up being in something I can't physically work due to an injury in my past or did not pay enough, I would lose my disability coverage and be totally fucked, meaning I would lose my mobile home, I had in the past worked for a company that would work with me and did very well, basically give me new stuff to test and broken stuff to repair and leave me alone type of thing but then had a change in management and then fired me a while after, I had 9 years of history at that company and they just did not care, they became hostile to people with disabilities, I never divulged that I am IC except for the tax free money I would set aside for medical stuff like diapers.
I worked at a tv shop for a while and my boss there knew all of my disabilities as he let me use his dumpster for my trash to save me money, he came in to work one time saying some one dumped a bunch of diapers in the dumpster, I owned up to it and just said " I thought I told you about that" he did not care after, he had thought some one illegally used his dumpster and that did happen often. He worked around my income limits with disability and that went well until we went out of business in 2013, I have not found squat since then except that 9 month assignment and a few odd jobs, I fix lasers for one guy but that work is maybe once or twice a month as it's a small company

I have an off topic question Caitianx, where did your avatar picture come from?
 
Cpdude I am sorry I am a sarcastic ass sometimes, I would have looked at the guy and said something like I would have left your sorry ass for two grand , thanks for the tip .

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This is something which creeps up into my thoughts once in a while. I'm trying my best to pursue a computer engineering degree(finally decided) I've done already 2 years but it wasn't easy. I've already had to take a break for a semester because my incontinence flared up and I had some other medical things to take care of. I just hope that after this degree I can keep going and maybe pursue a master's or something or maybe get some job? I really don't know. I mean hopefully I can finish my degree without any more complications but anyway.... My performance has been pretty good despite the exam stress I always get.

I really badly want to one day be able to support myself, that's like my goal. I mean I have never been in a job where as some of my friends have worked to pay off some of their tuition. All I got was a measly SAT scholarship and my parents do the majority, but at least I got that [emoji14]
Anyway maybe I'm doing pretty good by my standards.... Maybe I need to just take it easy.
 
After reading aall the posts after mine, it made me more aware of a few things. While the discussion ofeveryone, even people with disabilities should be able to get jobs and lead normal lives, and some part of society seems to push us towards that end. It's clearly bullshit. It seems as though that society ingenral wants to seem accepting of us but only to the point it makes them look good. When i was in vision rehab, they were always saying to me , nik has so muchpotential. Well yeah thats fine but the reality is that i will always be part of that 70 percent under or unemployed. For me it come to the realization that its about an incremental qulity of life increase. I will always be on the system, and thats fine. I realize also how lucky i am to have a part time job and even if thats only 12 hrs a week, itssomething. My major life change that will provide that increase in quality of life, is moving from NH to ME. I will be living in a buidilding of apartments of people with similar disabilities, a community with way better public transportation and a lot more things to do and will still have my part time job bagging at the grocery store. So overall i think i will benefit more from moving. Yes I'll have to learn a new city, ill probly rely on diapers a lot more but hey whatever it takes.
 
My life got a lot better when I packed up my one suitcase and moved to New York to be with my wife. I have many more friends, and much more to do then ever before. My life is good, except for the job part. I get ssdi and I make it work with help from my family. When I was last working, it was hard, it was boring and it was repetitive. I had to closely watch my earnings, so I didn't go afoul of the system. It felt good to be doing everything I could to help my family. But when ithe job ended, I felt like a weight was lifted off of me. I saw that it needed to end because my caregiver was close to getting in trouble for staying 2 extra hours every weekday to ensure my safety. I also know that it was hard on him personally to get up by 5 am to get to me by 7 so I could be clean, dressed and fed and ready for work at 9. I also realized that my take home pay per month at this $13 a hour job was only $200 more then my ssdi benefit. So after a while it felt like I was working 140 hours a month for $200 more then I would make if I took a walk knew the park instead.
 
DracoAmericanus said:
Yeah I fall into that 90% as well, I was on a temp job and did very well with it as it was in the range of one of my main narrow set of abilities but when that 9 months ran out they offered full time work in other areas but it ended up being in something I can't physically work due to an injury in my past or did not pay enough, I would lose my disability coverage and be totally fucked, meaning I would lose my mobile home, I had in the past worked for a company that would work with me and did very well, basically give me new stuff to test and broken stuff to repair and leave me alone type of thing but then had a change in management and then fired me a while after, I had 9 years of history at that company and they just did not care, they became hostile to people with disabilities, I never divulged that I am IC except for the tax free money I would set aside for medical stuff like diapers.
I worked at a tv shop for a while and my boss there knew all of my disabilities as he let me use his dumpster for my trash to save me money, he came in to work one time saying some one dumped a bunch of diapers in the dumpster, I owned up to it and just said " I thought I told you about that" he did not care after, he had thought some one illegally used his dumpster and that did happen often. He worked around my income limits with disability and that went well until we went out of business in 2013, I have not found squat since then except that 9 month assignment and a few odd jobs, I fix lasers for one guy but that work is maybe once or twice a month as it's a small company

I have an off topic question Caitianx, where did your avatar picture come from?

My Avatar is a still image from "Star TRek IV: The Voyage Home"
My work experience is spotty at best.
15 years of work total between the years 1978 to 2001.
My last job was working for 5 doctorate level engineers at a robotics company.
 
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