Disability rights or rights to know how our money is spent?

[DarkLight]

Part of my struggle is that my issues are quite variable. On a good day, I function just as well as anyone else. On a bad day, I might be having trouble getting out of bed and showered. In-between days I tend to look like I’m functioning if you don’t talk to me too much - though my brain will be pretty well fogged. Unfortunately I deal with a lot of judgement because of that, even from doctors who only see me on a good day and assume I can function all the time like that. Of course I can’t predict in advance what days are when, so I can’t hold down a job that requires me to function according to a set schedule…

 

[Bill_7154]

Part of my struggle is that my issues are quite variable. On a good day, I function just as well as anyone else. On a bad day, I might be having trouble getting out of bed and showered. In-between days I tend to look like I’m functioning if you don’t talk to me too much - though my brain will be pretty well fogged. Unfortunately I deal with a lot of judgement because of that, even from doctors who only see me on a good day and assume I can function all the time like that. Of course I can’t predict in advance what days are when, so I can’t hold down a job that requires me to function according to a set schedule…

I completely understand as I have severe depression and was just hospitalized for 2 weeks and now am going to a day tx with groups. The difference is that I have worked full time for the past 20 years. My company encouraged me to apply for long term disabilty a couple of years ago, I told my doctors but they didn’t say ‘that’s a great idea’ so I let it lay.

I think it’s important to keep in mind how $ motivates. If someone has no housing subsidy and no gov’t check…and McDonald’s started a program where anyone on disability could start working on a salary guarenteed for life starting at 50K and going up with the rate of inflation until they die or choose to not work anymore… how many ‘disabled’ would run to McDonald’s and how many would seem indifferent?

The current system dis-incentivises work among the disabled. That is a shame.

Peace,
Bill

 

[ringil]

If you have disability from the government, that is: SSDI, they give you money. How you spend it is entirely up to you. I don’t know the nature of your disability, but if you are dependent on your parents or anyone else, then, they will exert as much control as they want to. It is irrelevant what we think is right or wrong or whatever: it’s their money. When you take it, if it has strings, it does.

Have you applied for SSDI? This is the only way I know to be independent. Once you have your award, you can apply for subsidized housing and get your own place.

Yes, I receive SSDI but I certainly am looking for employment. SSDI is provided for those who have worked and paid a certain amount in taxes but who are disabled and cannot currently work.

The Government does want an accounting for the money I receive for my child (one half of my total SSDI). I have no problem with this as the money is designed to be used for her care, not for me to buy cool stuff.

 

[ringil]

It doesn’t always take that long.

I know someone that applied, sent information from her doctor and was declared 100% disabled pretty quickly. There weren’t multiple appointments or different doctors. And it certainly didn’t take two years. And from what I know, WAS completely disabled.

I also know someone else that was declared partially disabled, received payments but went out competitive dancing twice a week. They should have investigated her a little more.

Yes, I am legally blind so it is pretty straight forward. Still I have to reapply every few years, I guess, in case some miracle occurs, and my completely unchangeble condition mysteriously resolves itself.

For folks using “combination” diagnoses they will tend to take a long time. Sometimes folks choose to hire attorneys with this process.

 

[andrewstx]

My father got on disability when he was 55. Before that he took an early pension deal with the company he worked for. He has major back problems, with surgeries, and also cardiovascular problems with operations on his arteries. His dr’s supplied the info on his conditions and he still had to see a dr Soc Security referred him to. But he received disability at 6 month point, the fastest they give it to someone. FYI he’s not faking and was very conflicted about applying. He was working something like a min wage job for like 10hrs/week before that and after he got retirement bennies from the co he worked for his whole life and that job was making his back worse.

There is, IMO, from soc securities point of view, someone applying for disability in their early to late 20’s and someone applying in their 50’s. Many more fake when they are young, not many in their 50’s if they have worked their whole life without missing a day of work…

Also, in my dad’s case it is HIS money he is collecting as he paid the max into the system his whole working life. It’s different for someone in their 20’s, they have not paid into the system long enough to be covered by their own money until they die like my dad is…

God Bless,
Bill

I was 49 when I became disabled. I too worked and paid into social security. I feel the Government is paying back a bit early what I paid them.

 

[DarkLight]

I completely understand as I have severe depression and was just hospitalized for 2 weeks and now am going to a day tx with groups. The difference is that I have worked full time for the past 20 years. My company encouraged me to apply for long term disabilty a couple of years ago, I told my doctors but they didn’t say ‘that’s a great idea’ so I let it lay.

I think it’s important to keep in mind how $ motivates. If someone has no housing subsidy and no gov’t check…and McDonald’s started a program where anyone on disability could start working on a salary guarenteed for life starting at 50K and going up with the rate of inflation until they die or choose to not work anymore… how many ‘disabled’ would run to McDonald’s and how many would seem indifferent?

The current system dis-incentivises work among the disabled. That is a shame.

Peace,
Bill

Definitely get that. I think I may have a different view in part from being younger. I don’t just want a job - I want a career. I think I have a decent chance at building one that fits with what I can do, if I can get through school. I don’t want to get stuck working at McDonald’s any more than any other academically inclined young adult. Maybe if it would put me through school so I could do something I love and care about…but of course, unlike some of my friends, there’s no way I can hold down a full time job and go to school full time (or even really part time, since “full time” with grad school is one class).

The trouble is, when the current system incentivizes work, it almost invariably pushes towards that sort of low-level job. Even in cases like mine where there’s a good chance of being able to do other things. If I had the choice…I’d rather stay home and try to research and publish in my field, even if I never got paid, than go to working for Walmart and not have time or energy to do the stuff I actually enjoy.

 

[maryjk]

Definitely get that. I think I may have a different view in part from being younger. I don’t just want a job - I want a career. I think I have a decent chance at building one that fits with what I can do, if I can get through school. I don’t want to get stuck working at McDonald’s any more than any other academically inclined young adult. Maybe if it would put me through school so I could do something I love and care about…but of course, unlike some of my friends, there’s no way I can hold down a full time job and go to school full time (or even really part time, since “full time” with grad school is one class).

The trouble is, when the current system incentivizes work, it almost invariably pushes towards that sort of low-level job. Even in cases like mine where there’s a good chance of being able to do other things. If I had the choice…I’d rather stay home and try to research and publish in my field, even if I never got paid, than go to working for Walmart and not have time or energy to do the stuff I actually enjoy.

If most people, disabled or not, had the choice, they would rather spend time doing things they enjoyed rather than working at Wal-Mart or any job.

So do you think it is right for the government to pay for you to get an advanced degree when they have no guarantee that you will ever be able to use that degree? Because that it seems you are saying here.

Is there a way to work in your field without an advanced degree? Maybe work with a BS, then after you have saved some money, then go on for your Masters or PhD? Not knowing your field, I don’t know if that is possible.

 

[DarkLight]

If most people, disabled or not, had the choice, they would rather spend time doing things they enjoyed rather than working at Wal-Mart or any job.

So do you think it is right for the government to pay for you to get an advanced degree when they have no guarantee that you will ever be able to use that degree? Because that it seems you are saying here.

Is there a way to work in your field without an advanced degree? Maybe work with a BS, then after you have saved some money, then go on for your Masters or PhD? Not knowing your field, I don’t know if that is possible.

In academia? No, you don’t get work without a PhD.

My concern is less than the specifics and more that the system seems to be ok with leaving disabled people at poverty-level jobs, with no way of advancement. If those sorts of low-level jobs gave me a chance to save up more. As it is, I’ve struggled on an equivalent amount of money to even find ways to pay all the bills.

As a young adult, that doesn’t just mean you don’t get to go to school right now. It means you never get to go, unless your health improves. It means you can’t take a risk on training for another job, even if it would be more compatible with your own conditions. For that matter, it means you’ll never be able to support a family - not that most people will think that you should have one. That’s what I’m not okay with - the idea that I’m supposed to be happy spending the next 40 or 50 years in a dead-end, poverty-level job. And remember with a disability, there’s a fair chance that job is my life, because it’s too draining to show up to work and then go see a movie or spend time with friends afterwards.

I don’t consider that a life - I consider it little more than legalized slavery. You get told you should be happy for the “privilege” of working at all, and that it doesn’t matter if it consumes your entire life and you never get out.

 

[maryjk]

In academia? No, you don’t get work without a PhD.

So your degree is only useful in a university setting?

My concern is less than the specifics and more that the system seems to be ok with leaving disabled people at poverty-level jobs, with no way of advancement. If those sorts of low-level jobs gave me a chance to save up more. As it is, I’ve struggled on an equivalent amount of money to even find ways to pay all the bills.

The goal of any disability training program should be to get the participants working. If going to college is the plan, then a job should also be the end game. Now, working in academia may be your dream, but maybe it isn’t in the cards for you. Many people would like to get more education, but simply can’t afford it.

As a young adult, that doesn’t just mean you don’t get to go to school right now. It means you never get to go, unless your health improves. It means you can’t take a risk on training for another job, even if it would be more compatible with your own conditions. For that matter, it means you’ll never be able to support a family - not that most people will think that you should have one. That’s what I’m not okay with - the idea that I’m supposed to be happy spending the next 40 or 50 years in a dead-end, poverty-level job. And remember with a disability, there’s a fair chance that job is my life, because it’s too draining to show up to work and then go see a movie or spend time with friends afterwards.

I don’t consider that a life - I consider it little more than legalized slavery. You get told you should be happy for the “privilege” of working at all, and that it doesn’t matter if it consumes your entire life and you never get out.

Welcome to life. Most people work long hours at a job that pays the bills. If they are lucky they save up for a week long vacation. Many people are out of work, many that have jobs haven’t had a raise in a long time. It has nothing to do with being disabled, it is just life.

And although this thread is about “general” disability rights, it started because of a question about your rights. What you haven’t mentioned is that you are not getting disability. Your parents are the ones footing the bill. There is a big difference between what the government is willing to give you and what your parents can give. In addition, the government may not require as much as a parent might when asking for an accounting.

 

[DarkLight]

So your degree is only useful in a university setting?The goal of any disability training program should be to get the participants working. If going to college is the plan, then a job should also be the end game. Now, working in academia may be your dream, but maybe it isn’t in the cards for you. Many people would like to get more education, but simply can’t afford it.
Welcome to life. Most people work long hours at a job that pays the bills. If they are lucky they save up for a week long vacation. Many people are out of work, many that have jobs haven’t had a raise in a long time. It has nothing to do with being disabled, it is just life.

Then society is wrong. If society thinks that it’s ok to stick people at poverty level and leave them there, then there’s a problem with society. Do I need an education? Not necessarily. But I think there’s something wrong in any case where people are allowed to get stuck with no savings and no chance for advancement or having a family or a life outside of work. It just bothers me that, when you have a disability, a lot more people seem to think you should be grateful for that chance to work at all.

How would you feel if I told you that, in order to survive, you had to accept working 80 hour weeks up until retirement age, at a job that would just barely cover the bills if it does at all? That you would never be allowed the chance to look for another job, or have a family? Even if that job makes you get sicker? That’s effectively what goes on with disability.

And although this thread is about “general” disability rights, it started because of a question about your rights. What you haven’t mentioned is that you are not getting disability. Your parents are the ones footing the bill. There is a big difference between what the government is willing to give you and what your parents can give. In addition, the government may not require as much as a parent might when asking for an accounting.

I mentioned the government because the reason I’m relying on my parents is that the government won’t provide useful help. It would require me to quit my education and take on a job that, while I am technically capable of doing it, would be detrimental to my health and still not provide the resources I need to get care.

As far as I’m concerned, it’s the same issue for me in both cases. Someone else is making decisions that are both personally degrading and detrimental to my health for me, and gets away with it because I can’t afford expensive medical care. Yet somehow when I talk to people it ends up being my fault.

 

[maryjk]

Then society is wrong. If society thinks that it’s ok to stick people at poverty level and leave them there, then there’s a problem with society. Do I need an education? Not necessarily. But I think there’s something wrong in any case where people are allowed to get stuck with no savings and no chance for advancement or having a family or a life outside of work. It just bothers me that, when you have a disability, a lot more people seem to think you should be grateful for that chance to work at all.

How would you feel if I told you that, in order to survive, you had to accept working 80 hour weeks up until retirement age, at a job that would just barely cover the bills if it does at all? That you would never be allowed the chance to look for another job, or have a family? Even if that job makes you get sicker? That’s effectively what goes on with disability.

Who do you know, with a degree, that works at a job 80 hours a week? You have a degree, if that degree is worth anything, you should be able to get a 40 -50 hour a week job that would more than support you. Maybe you didn’t choose well when you went to school.

My nephew’s girlfriend is getting a degree in French Lit and is worried that she won’t be able to find a job. No kidding, I would be worried too.

Maybe instead of planning on another 4 - 6 years of school, you devote your schooling on being self sufficient.

No one is saying disabled people shouldn’t get a degree. But it seems over the top to think that if you don’t have a PhD you are going to be stuck at the poverty level.

I mentioned the government because the reason I’m relying on my parents is that the government won’t provide useful help. It would require me to quit my education and take on a job that, while I am technically capable of doing it, would be detrimental to my health and still not provide the resources I need to get care.

As far as I’m concerned, it’s the same issue for me in both cases. Someone else is making decisions that are both personally degrading and detrimental to my health for me, and gets away with it because I can’t afford expensive medical care. Yet somehow when I talk to people it ends up being my fault.

Maybe it is what you find degrading vs. what other people find degrading.

I don’t see it as degrading that someone else won’t pay for your PhD. Or that they think you should work, at least some, if you are able, to help pay for your health insurance.

 

[DarkLight]

Who do you know, with a degree, that works at a job 80 hours a week? You have a degree, if that degree is worth anything, you should be able to get a 40 -50 hour a week job that would more than support you. Maybe you didn’t choose well when you went to school.

My nephew’s girlfriend is getting a degree in French Lit and is worried that she won’t be able to find a job. No kidding, I would be worried too.

Maybe instead of planning on another 4 - 6 years of school, you devote your schooling on being self sufficient.

No one is saying disabled people shouldn’t get a degree. But it seems over the top to think that if you don’t have a PhD you are going to be stuck at the poverty level.
Maybe it is what you find degrading vs. what other people find degrading.

That’s not the point, though. If I’m working with my (currently largely untreated) disability, my 30 or 40 hour week is the equivalent, in energy, to your 80 hour week. If I have to go in on a specific set schedule, 8 hours a day for 5 or days a week, I have nothing left after that in terms of energy. I can barely manage to cook food. If I have a bit of extra energy I might manage to do laundry. I use 80 hours a week as an analogy for what life as a disabled person can be like.

Same thing with the sorts of minimum wage jobs I’m being offered as a person with a disability. Once you add in medical bills (often not fully covered by insurance, even if you manage to get some), and all the other little expenses that disability can provide and you aren’t getting help with, you’ve quickly eaten through the paycheck you’ve gotten. Even with help I’ve had times when I’ve forgone medical care because I simply couldn’t afford it - sometimes even just the copay. Or gone without food because I couldn’t spare the effort to cook or go out and couldn’t afford to order delivery yet again. These are expenses that aren’t covered but nevertheless arise for people with a disability.

In my case, the disability probably isn’t permanent, if I could get proper care. What frustrates me is that the care I need is incompatible with holding down a job right now. But because I technically can work if I don’t try any new meds and don’t spend any serious time getting help, I’m expected to no matter what the consequences for me. No matter even if it’s more likely to result, in the long term, in a permanent disability.

That’s what I consider degrading. That my right to medical care is allowed to depend on this sort of thing. Or that it’s considered acceptable to force me into a job that’s too high a stress level for my current condition, regardless of the fact that it’s making me slowly unable to care for myself. Or even that my right to have the time for some life outside of work is in question, even at the basic level of being able to see friends once a month, or guarantee that I will usually be able to make Mass. These are basic. These are not things that I have guaranteed right now; they are all things that I have lost at different points in time due to disability.

 

[maryjk]

That’s not the point, though. If I’m working with my (currently largely untreated) disability, my 30 or 40 hour week is the equivalent, in energy, to your 80 hour week. If I have to go in on a specific set schedule, 8 hours a day for 5 or days a week, I have nothing left after that in terms of energy. I can barely manage to cook food. If I have a bit of extra energy I might manage to do laundry. I use 80 hours a week as an analogy for what life as a disabled person can be like.

Well, since I have Lupus, you shouldn’t compare yourself to me.

Same thing with the sorts of minimum wage jobs I’m being offered as a person with a disability. Once you add in medical bills (often not fully covered by insurance, even if you manage to get some), and all the other little expenses that disability can provide and you aren’t getting help with, you’ve quickly eaten through the paycheck you’ve gotten. Even with help I’ve had times when I’ve forgone medical care because I simply couldn’t afford it - sometimes even just the copay. Or gone without food because I couldn’t spare the effort to cook or go out and couldn’t afford to order delivery yet again. These are expenses that aren’t covered but nevertheless arise for people with a disability.

But now we are back to your degree. If you are only being offered minimum wage jobs, are you using your degree?

People don’t need a PhD to make a decent living.

In my case, the disability probably isn’t permanent, if I could get proper care. What frustrates me is that the care I need is incompatible with holding down a job right now. But because I technically can work if I don’t try any new meds and don’t spend any serious time getting help, I’m expected to no matter what the consequences for me. No matter even if it’s more likely to result, in the long term, in a permanent disability.

So, work on getting better, then work on your advanced degree. Many people take time off from getting an advanced degree to make money or to regroup. Maybe you need to do that.

That’s what I consider degrading. That my right to medical care is allowed to depend on this sort of thing. Or that it’s considered acceptable to force me into a job that’s too high a stress level for my current condition, regardless of the fact that it’s making me slowly unable to care for myself. Or even that my right to have the time for some life outside of work is in question, even at the basic level of being able to see friends once a month, or guarantee that I will usually be able to make Mass. These are basic. These are not things that I have guaranteed right now; they are all things that I have lost at different points in time due to disability.

You are confusing right with wants or desires.

No one has a right to have whatever medical care they want. Heck, I want a doctor on call for me. With Lupus, it would be nice to have someone ready to answer all of my questions. But instead, like everyone else, I deal with nurses and receptionists.

I went for months without being able to go out with friends. I don’t have a “right” to that. Instead, I was taking care of a sick family member.

 

[DarkLight]

I got my B.A. with the understanding that I would go directly for a PhD afterwards. I was not disabled until the very end of my undergrad career and did not have any way of knowing it would get this bad. The field my degree is in does not have jobs that will take you with only a B.A. There are a very few that will accept you with a M.A. but almost all require a full PhD. So no, I’m not “using my degree” because I haven’t had the chance to get to where I could use it.

The problem is that the sorts of minimum wage jobs I can get right now interfere with the sort of medical care I need. The treatments require a lot of time and energy to focus just on that. Medications take up to a month of adjustment period to evaluate, during which I can be much sicker than normal and not able to do work. The only way for me to hold down the sort of shift-work offered to young adults here is if I refuse almost all medical care. But since I could do that for a while, I’m being told I have to do just that. Even though I go home and have difficulty taking basic care of myself.

That’s what I meant by a right. I’m not just not getting medical care that I want. I’m effectively being denied the basic treatment indicated for my condition. I’d love to be able to just call up a receptionist and make an appointment, even to see the nurse. If my medical stuff didn’t result in so many missed appointments because I lacked the resources to get myself there, or if every conversation didn’t end in “you need to be doing such-and-such” that I can’t do because I’d have to take time off of work.

 

[Pug]

I think it is frustrating to have to choose between employment and correct personal care. But that is the way of it with disabled people as far as I can tell, unless they have good support at home. That is why I think these things need to be taken care of locally. It is obvious to one’s family that going to the store and preparing decent meals and bathing and going to the doctor and physical therapy, etc. are the basics, before going to a job. Even so, it doesn’t happen.

I know in my life I choose to work rather than always have decent care. That is the choice I was trained to make from childhood. Perhaps it is an American thing.

 

[Bill_7154]

I was 49 when I became disabled. I too worked and paid into social security. I feel the Government is paying back a bit early what I paid them.

The shame with the system as I see it now, and even moreso into the future, is that people pay into it starting in their teens and don’t collect until 65, with ppl in their 40’s and younger probably not until 70 yrs old or more… so if they live 10-15 yrs they will not get back nearly what they paid into it. If it was a privatized system where people could control where their money was invested in the yield would be much higher… and if a relative could keep collecting in the event of death of the person…the family at least could get what the person put into it, plus accumulate profits from the investment.

As it stands now, how many pay from age 18-65 and then die at age 68 or something? It’s neglectful IMO.

Peace,
Bill

 

[Bill_7154]

Definitely get that. I think I may have a different view in part from being younger. I don’t just want a job - I want a career. I think I have a decent chance at building one that fits with what I can do, if I can get through school. I don’t want to get stuck working at McDonald’s any more than any other academically inclined young adult. Maybe if it would put me through school so I could do something I love and care about…but of course, unlike some of my friends, there’s no way I can hold down a full time job and go to school full time (or even really part time, since “full time” with grad school is one class).

The trouble is, when the current system incentivizes work, it almost invariably pushes towards that sort of low-level job. Even in cases like mine where there’s a good chance of being able to do other things. If I had the choice…I’d rather stay home and try to research and publish in my field, even if I never got paid, than go to working for Walmart and not have time or energy to do the stuff I actually enjoy.

My McDonald’s example (with very high pay compared to real McDonald’s jobs) was simply to point out that a lot of ‘disabled’ people would instantly become not disabled if they could get full time jobs making a lot more money than they do on disability.

As it stands, most people won’t want to work unless they can have a professional job, the type your interested in, because it’s financially not worth it. They give up guarenteed income, often subsidized housing, free health care… and a paid 52 week per year vacation.

In order for it to be financially ‘worth it’ for people in that situation to give that up and work full time, they are not going to do it for a 10-12 $ per hour job. But if they can make 50-60K/yr, NOW it becomes attractive, moreso than disability does. I wish you the best with your goal, most everyone can do what you want, with enough time and effort devoted to it along with a mindset that there is no ‘failure’ only temporary setbacks which can be overcome.

God Bless,
Bill

 

[Bill_7154]

If most people, disabled or not, had the choice, they would rather spend time doing things they enjoyed rather than working at Wal-Mart or any job.

So do you think it is right for the government to pay for you to get an advanced degree when they have no guarantee that you will ever be able to use that degree? Because that it seems you are saying here.

Is there a way to work in your field without an advanced degree? Maybe work with a BS, then after you have saved some money, then go on for your Masters or PhD? Not knowing your field, I don’t know if that is possible.

The problem is that the gov’t sets it up this way, it’s not because disabled people through fits and constantly demonstrate for this. Let’s face it, if you could earn 80% of your salary from not working, and it was guarenteed for life, you probably would do it. I know I would. And for disabled people, for the most part, they are collecting 80%, or more than that, of what they earned prior to being disabled. It’s simple economics before right or wrong even enters into it. The gov’t gives pppl a living, a poor one but a living, while giving them a 52 week/yr paid vacation. What economic incentives need to be in place for most people to give that up?

Peace,
Bill

 

[Bill_7154]

Then society is wrong. If society thinks that it’s ok to stick people at poverty level and leave them there, then there’s a problem with society.

You do realize that this is the reality for millions of people not on disability, don’t you? I work full time and am behind on my bills. When I was 25 and homeless people encouraged me to collect SSDI, I wanted to work so I started working at temp agencies. I could have qualified for disability. I still work full time, I’m a working poor person. Sometimes I think that I would be better off being a non working poor person. I would be able to spend a ton of quality time with my son if I were in that catagory rather that being exhasued after work and using all my vacation time as sick time plus taking unpaid medical leave due to my condition. It’s not fun. But it is my life and the life of many other people.

Peace,
Bill

 

[Bill_7154]

Who do you know, with a degree, that works at a job 80 hours a week? You have a degree, if that degree is worth anything, you should be able to get a 40 -50 hour a week job that would more than support you. Maybe you didn’t choose well when you went to school.

My nephew’s girlfriend is getting a degree in French Lit and is worried that she won’t be able to find a job. No kidding, I would be worried too.

Maybe instead of planning on another 4 - 6 years of school, you devote your schooling on being self sufficient.

No one is saying disabled people shouldn’t get a degree. But it seems over the top to think that if you don’t have a PhD you are going to be stuck at the poverty level.
Maybe it is what you find degrading vs. what other people find degrading.

I don’t see it as degrading that someone else won’t pay for your PhD. Or that they think you should work, at least some, if you are able, to help pay for your health insurance.

I would love to be able to collect money and go to school paid for. As it stands I can’t school and work full time b/c of my mental status, let alone financial. I could get out of poverty, but I"m stuck where I’m stuck. So a lot of working ppl are in your exact situaiton, the difference is that they work and dont get a living, albeit a poor one, for not working. I will probably go on disability before retiring but am trying to hold onto my job as long as I can. I could quality now I’m sure, but I want to work as long as I can.

Peace,
Bill