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

[DarkLight]

This is something I’ve been thinking about, as someone who’s been fighting with disability and trying to manage. I hear the argument a lot that people who spend money have a right to know and control how their money is spent. Either if you’re depending on family, on private charity, or on government money, the argument is the same - there need to be extra limits to ensure the money isn’t wasted.

At the same time, most of us believe that adults generally should have the right to determine what they do with their lives, provided they contribute to society as best they can and don’t cause harm to others. Where this becomes an issue especially clearly is when it comes to disability rights, or rights for those with more expensive illness.

A disability is not typically something someone has control over or chooses to acquire, so we can’t argue that the individual should have made better choices. It can, however, easily prevent a person from being self-supporting on the level of a normal adult, whether through inhibiting the ability to work, requiring extra physical care, or simply racking up medical bills.

What level of control is reasonable on aid, whether it comes from family or the government? We justify restrictions on children in part because we expect them to grow up and be able to support themselves on their own, but this isn’t always the case with disabled adults.

 

[Julia_Mae]

I’m sorry, I read this twice and I’m not sure what point you are making or question you may be asking. Could you clarify?

 

[maryjk]

I’m sorry, I read this twice and I’m not sure what point you are making or question you may be asking. Could you clarify?

DarkLight is an adult but relies on her parents for monetary support.

She is asking if it is reasonable for her parents to have a say in what she does, if they are helping to support her.

Part of the question seemed to be, at least in another thread, was, is DarkLight doing all she can to help herself.

 

[andrewstx]

When money leaves your bank account of pocket and enters the general budget it is no longer yours to control.

I am disabled from a bad stroke 8 years ago, and I get less than $700 a month SSI. Believe me that money goes for general survival. No one make so much on dissability that they can buy Cadillacs and cases of champagne, Just think about it, my clothes come from St Vincent de Paul, not Nieman Marcus. This computer was a gift.

 

[DarkLight]

I’m sorry, I read this twice and I’m not sure what point you are making or question you may be asking. Could you clarify?

This:

What level of control is reasonable on aid, whether it comes from family or the government?

 

[DarkLight]

DarkLight is an adult but relies on her parents for monetary support.

She is asking if it is reasonable for her parents to have a say in what she does, if they are helping to support her.

Part of the question seemed to be, at least in another thread, was, is DarkLight doing all she can to help herself.

Yes, that was the original thought, although I was avoiding citing the specific situation so as not to get on a zillion rabbit trails of people who think they know my life from an internet post better than I do.

 

[Julia_Mae]

Yes, that was the original thought, although I was avoiding citing the specific situation so as not to get on a zillion rabbit trails of people who think they know my life from an internet post better than I do.

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.

 

[DarkLight]

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.

Heh…I actually live on my own, the problem is that my school insurance doesn’t cover the stuff I need covered. However, my state thinks that I should quit school and get a job over the same hours in order to get their help - which I think is a terrible idea, particularly since I have something that with appropriate treatment need not be disabling in the long term, I just need enough time to find an appropriate treatment without worrying about missing work. My professor for the one class I’m taking is willing to work with me on my schedule (even registering it as an incomplete if necessary), but I have to take that class this year if I want to graduate. All the available jobs in this area require a sort of specific schedule commitment that I just can’t make if I want to seriously deal with my health. The state’s really trying its best to keep single adults from getting benefits - it’s sort of frustrating, comes across as having to prove that you really can’t work to people who automatically disbelieve everything you say. Part of why I haven’t done it is that it’s so much work and energy that dealing with their offices causes me to be out of commission for days.

It’s actually a sort of frustrating situation, because it feels like my inability to pay for care on my own is precisely what’s keeping me disabled for several years now for something that should have been treatable, simply because in so many cases I’ve been told that if I make the choices that I need to get better, I’ll lose the support I need to survive.

But in any case, I was really trying to keep my specific situation OUT of this thread precisely for this reason. I don’t want a good general question to be bogged down in a long list of strangers speculating on my options.

 

[Julia_Mae]

But in any case, I was really trying to keep my specific situation OUT of this thread precisely for this reason. I don’t want a good general question to be bogged down in a long list of strangers speculating on my options.

I am disabled, I don’t need to speculate on your options, everything you say sounds like exactly the kind of incredible ____ the government lays down. The problem is, your question is so general, there isn’t any way to answer it and the fact is: there’s no answer. Things are what they are whether they should be that way or not.

My only advice is: if you have not consulted an attorney, do so. You can also apply to SSDI for a temporary disability status, which will get the state off your back, and is easier to have approved. SSDI comes with Medicaid so you’ll get treatment, and a year to focus on your health issues. I think it’s for 1 year but can be renewed. If you have already eliminated this option, I can only offer you prayers.

Good luck.

 

[VivienneJ]

I suggest that in cases where the money comes from a government disability or similar scheme, it is somewhat like a salary - an employer does not ask or expect to be told how the money earned is spent (beyond expecting that you come to work as expected and keep yourself healthy enough to do the job).

While that should be similar if the money comes from family, that is not always the case. When my daughters were children and I gave them pocket money, while I tried to discourage them from making unwise spending choices, I left if pretty much up to them how it was spent, as I felt this would help them learn some valuable lessons. I have felt differently giving to help support an adult “child”; and have made some different decisions. I think of an occasion when she was “desperate because she had no food” - I took her shopping and into her trolley she included purchases of chocolate and a magazine - at that point I was on a very limited budget and chocolate and magazines were not part of my usual shopping, so this rankled and the next time she was “needing food” I stopped at the supermarket and bought food which I took to her. I did feel she “owed” me some accountability and needed to show some responsible commitment to, in her case, her studies to justify my further and continuing financial assistance.

 

[maryjk]

The state’s really trying its best to keep single adults from getting benefits - it’s sort of frustrating, comes across as having to prove that you really can’t work to people who automatically disbelieve everything you say. Part of why I haven’t done it is that it’s so much work and energy that dealing with their offices causes me to be out of commission for days.

It seems that the state is trying to keep as many people off of disability as they can, regardless of their marital status. Disability money doesn’t grow on trees, so they need to be sure that the person is disabled before they hand over any money. As someone that pays taxes, I want the government to be skeptical about anyone applying.

It’s actually a sort of frustrating situation, because it feels like my inability to pay for care on my own is precisely what’s keeping me disabled for several years now for something that should have been treatable, simply because in so many cases I’ve been told that if I make the choices that I need to get better, I’ll lose the support I need to survive.

I don’t know how old you are, or what your disability is, but yes, sometimes I am sure it feels like a catch 22.

But in any case, I was really trying to keep my specific situation OUT of this thread precisely for this reason. I don’t want a good general question to be bogged down in a long list of strangers speculating on my options.

Okay, so in general, people applying for disability should have to prove they are disabled. They should have to have doctors (yes, more than one) that verify the disability and that person that is unable to care for themselves.

And yes, I think there should be strings attached to the money that is received. If someone can’t take care of them self, simply handing them money isn’t a solution.

 

[Bill_7154]

This is something I’ve been thinking about, as someone who’s been fighting with disability and trying to manage…What level of control is reasonable on aid, whether it comes from family or the government? We justify restrictions on children in part because we expect them to grow up and be able to support themselves on their own, but this isn’t always the case with disabled adults.

Most of quoted post cut so reply could fit.

I can tell you that I have extensive experience working with folks who are deemed disabled because of a mental defect or illness and that in my own subjective opinion, based on working directly with, or indirectly with hundreds of people who fit into that catagory, most of them (more than 50%- and that is a quite conservative guestimate) are either able to work part-time or able to acquire the skills necessary to work part-time in a relatively short period of time (less than 6 months).

As you may know, someone on disability through social security can earn up to $1,050 per month. If they have government supported housing they pay 30% of their income towards rent, the gov’t picks up the rest. So if they work and earn $1,000 per month they will have to pay $300 more towards their rent. They also get medicare and/or medicaid either for free or for a low cost of under $100 per month I believe. When it comes to co-pays, for Dr, and therapy visits they pay nothing. For medications they pay $1-$3.

Now if someone can work 5 hrs per week and earn $1,000, or 10 hrs or less per week and earn $1,000 I think most will do it even if they have to give up 1/3 toward their housing. And some will do it if they had been working well into adulthood, say if they worked full-time from age 21-40 then became disabled because work and structure has become a significant and ingrained part of their daily routine. However, if they become disabled before reaching age 21, or do not have something like 4-5 years of working (I foget how many ‘quarter years’ someone has to work in order to collect social security- if they haven’t worked enough quarters they get SSI from social security which is most always less than social security income) and also get gov’t supported housing they fair much worse financially if working. Folks on SSI can only earn something like $140/month (last I knew it was $80/month and am assuming it has went up but not certain) and then the social security office takes 50% of every dollar they earn from their gross income over the $140. The gov’t also takes 30% of their total gross income, meaning they get to keep 20% of their income from work. I hope no one is surprised that the majority of people in this catagory choose to not work. They get both medicare and medicaid so no co pays for anything except for $1-$3 for medications.

So their are disincentives to working while on soc security or SSI, particularly on SSI. And for people who would be working at or close to min wage while on soc security, needing to work 20hrs/week in order to earn and keep only $700 of the 1K they earn, there is much less incentive to work. And if a person becomes disabled in their early to mid 20’s and are not invested in working from the get go, they stagnate and develop comfort to collecting and living off of soc security and effectively become ‘retired’.

Of course working taxpayers pay for all of this, for a system that disincentivises working where they suffer by paying taxes and the individuals on the dole suffer because they loose whatever status they had in society and become a ghost, their role in life becomes ‘a mental patient’. Also, not only can most of these individuals either work part time or learn to work part time in a short period of time, many could also acclimate themselves to working full-time…but why would they? Certainly NOT for financial reasons. After all, most of them are going to be working jobs at or close to min wage, definitely low paying jobs. Many of those will loose their free healthcare, taking a large financial blow. So the small % of people who are highly motivated to work (under 5% for sure) have a bunch of disincentives in their face which turn them away from ever working full time… despite having the ability to learn to adjust and function while working a low level full time job. It’s simple economics, cut and dry. And most of the individuals who become mentally disabled were not working high paying jobs before becoming disabled, so the income level they are used to receiving from work is met or surpassed from the check from soc security/SSI, subsidized housing, and free health care.

Ask yourself this question: If your employer basically guarenteed for you to be cut a check for 80% of what you earn, and you could keep your healthcare… and this would be for the rest of your life, would you do it? I for certain wold do it. This is the situation people on disability or SSI are in. They are typically not dr’s or lawyers or ceo’s where earning small money would hurt them so they would be highly motivated to engage in rehab to get back to where they were at. SSI or social security, especially when subsidized housing comes through for them… are highly motivated to NOT WORK via gov’t disincentive entitlement programs.

God Bless,
Bill

 

[DarkLight]

Well, first off, it looks like there’s two separate issues here. One, how do we determine who should get help, and how much help. Two, what sorts of restrictions should we place on people who are getting help.

As far as the first - when we’re dealing with government programs, it’s a cost-benefit analysis. Less restrictive rules mean an increased chance of cheats. More restrictive rules increase the chances of people being denied legitimate care. The effects of disability on the application process also have to be considered - can people make required appointments, is paperwork clear and accessible, can personnel understand the manifestations of various disabilities and work around them?

This is of course aside from the questions on, once the support has been decided, what sorts of restrictions should be placed on it. Do you simply provide insurance and money for medical care, or should someone be overseeing what care is purchased? Should there be restrictions on what sorts of things monetary aid can be used for?

My own personal biggest frustrations are simply with dignity. You feel like you’re constantly under suspicion of being lazy and dishonest, no matter your actual character - even many lay people feel the right to judge whether someone is “truly disabled,” On the flip side, many people who do know about the disability tend to discourage you from trying to achieve your own goals - I’ve had many people try to caution me away from pursuing a PhD and career, on the assumption that I couldn’t possible handle it. I think my concern with money is that people act like you deserve to be minded like a child. The psychological effect, at least on a young adult, of feeling like you’re not trusted to take care of yourself, is…something that most people, I think, don’t see. Many people speak of it as feeling like you’re a perpetual child, no matter what you do.

Before I hit this patch, I would have supported a lot more rules. Now…I worry that our tradeoff for trying to prevent cheats is coming in human dignity. Or if you rely on family, in the same assumptions that people make about your character, the sense of being forced to live in a suspended adolescence. Even in little things - little things that can help you feel human and loved, like getting a beer with friends once a month without anyone questioning you for it. Being able to make medical decisions without having to run it by endless people who know very little about the situation. Not having random people question if you’re faking it if you do something that, in their minds, doesn’t “fit” with your disability. All these wear on a person, make you want to give up.

 

[Dale_M]

What level of control is reasonable on aid, whether it comes from family or the government? We justify restrictions on children in part because we expect them to grow up and be able to support themselves on their own, but this isn’t always the case with disabled adults.

I think one of the reasons for government programs which provide money directly to persons with disabilities is to increase the dignity of person receiving the money, and by extension, the autonomy of that person. Such programs are an entitlement of being a citizen of the country, and the money transferred belongs to the person receiving it.

In contrast, private donors, whether individuals or organizations, often want to supervise how “their money” is being spent by the person receiving it. The money doesn’t belong to the recipient outright…ownership is conditional. The donor wants to make sure the money is used in a way which meets the donor’s approval. This leaves the recipient in a constant state of humility (or humiliation.)

The approach of private donors seems part of human nature. We want to make sure that no one is taking advantage of our generosity. But this approach can deprive the recipient of dignity.

 

[Bill_7154]

On the flip side, many people who do know about the disability tend to discourage you from trying to achieve your own goals - I’ve had many people try to caution me away from pursuing a PhD and career, on the assumption that I couldn’t possible handle it. .

Read up on the life of Dr. Daniel Fisher. Mental Patient told he would never hold any kind of full time job, ever. He choose to ignore that and went to medical school. He as an M.D. and 2 PhD’s. He was on the presidents counsel for mental health in 2004. He mostly gives speeches, writes papers, etc now rather than seeing patients. His life story is very inspiring.

God Bless,
Bill

 

[Do_Good_Then_Go]

Well, first off, it looks like there’s two separate issues here. One, how do we determine who should get help, and how much help. Two, what sorts of restrictions should we place on people who are getting help.

As far as the first - when we’re dealing with government programs, it’s a cost-benefit analysis. Less restrictive rules mean an increased chance of cheats. More restrictive rules increase the chances of people being denied legitimate care. The effects of disability on the application process also have to be considered - can people make required appointments, is paperwork clear and accessible, can personnel understand the manifestations of various disabilities and work around them?

This is of course aside from the questions on, once the support has been decided, what sorts of restrictions should be placed on it. Do you simply provide insurance and money for medical care, or should someone be overseeing what care is purchased? Should there be restrictions on what sorts of things monetary aid can be used for?

My own personal biggest frustrations are simply with dignity. You feel like you’re constantly under suspicion of being lazy and dishonest, no matter your actual character - even many lay people feel the right to judge whether someone is “truly disabled,” On the flip side, many people who do know about the disability tend to discourage you from trying to achieve your own goals - I’ve had many people try to caution me away from pursuing a PhD and career, on the assumption that I couldn’t possible handle it. I think my concern with money is that people act like you deserve to be minded like a child. The psychological effect, at least on a young adult, of feeling like you’re not trusted to take care of yourself, is…something that most people, I think, don’t see. Many people speak of it as feeling like you’re a perpetual child, no matter what you do.

Before I hit this patch, I would have supported a lot more rules. Now…I worry that our tradeoff for trying to prevent cheats is coming in human dignity. Or if you rely on family, in the same assumptions that people make about your character, the sense of being forced to live in a suspended adolescence. Even in little things - little things that can help you feel human and loved, like getting a beer with friends once a month without anyone questioning you for it. Being able to make medical decisions without having to run it by endless people who know very little about the situation. Not having random people question if you’re faking it if you do something that, in their minds, doesn’t “fit” with your disability. All these wear on a person, make you want to give up.

Great post DarkLight. I don’t have any answers but I think you raise some REALLY good points and some important questions that we should all be thinking about.

I have an intellectually disabled family member - he is obviously disabled and it’s immediately apparent to anyone who meets him that he couldn’t work in regular employment (he does work at a sheltered workshop) and couldn’t manage his finances even if he wanted to so many of your points don’t apply in his case but even so I’ve had people say that his government disability money or the very small amount he earns at the sheltered workshop shouldn’t be used on ‘frivolous’ things like new clothes or outings!!

Why should he not have the dignity of having new clothes when he needs them just because he’s intellectually disabled? And why should he not be allowed to go on an outing or even a holiday just for pleasure? Thankfully he doesn’t understand enough to know that some people think that people in similar situations to him should only be given enough government assistance to exist.

 

[andrewstx]

It seems that the state is trying to keep as many people off of disability as they can, regardless of their marital status. Disability money doesn’t grow on trees, so they need to be sure that the person is disabled before they hand over any money. As someone that pays taxes, I want the government to be skeptical about anyone applying. I don’t know how old you are, or what your disability is, but yes, sometimes I am sure it feels like a catch 22.

Okay, so in general, people applying for disability should have to prove they are disabled. They should have to have doctors (yes, more than one) that verify the disability and that person that is unable to care for themselves.

And yes, I think there should be strings attached to the money that is received. If someone can’t take care of them self, simply handing them money isn’t a solution.

It took 4 Drs visits diferent Doc each time. A visit to a shrink and a physical thereapist and a two year wait to establish that I was really, truly, genuninely disabled.

All it would have taken was an interview with my ex-Benedictine roomy to tell them 1 my drivers liscence was takemn form me before I left hospital 2 Ican can not bathe or dress myself without a lot of assistence. 3 I am incapable of walking without a walker or quad cane. 4 I have short periods when I space out continually have no idea what is going on. 5 I can start the same book over several times and it is like starting anew each time.

I think sometimes the checkers waste more money with all nthe appointments and delay than they would if they just see the obvious.

 

[maryjk]

It took 4 Drs visits diferent Doc each time. A visit to a shrink and a physical thereapist and a two year wait to establish that I was really, truly, genuninely disabled.

All it would have taken was an interview with my ex-Benedictine roomy to tell them 1 my drivers liscence was takemn form me before I left hospital 2 Ican can not bathe or dress myself without a lot of assistence. 3 I am incapable of walking without a walker or quad cane. 4 I have short periods when I space out continually have no idea what is going on. 5 I can start the same book over several times and it is like starting anew each time.

I think sometimes the checkers waste more money with all the appointments and delay than they would if they just see the obvious.

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.

 

[Bill_7154]

Great post DarkLight. I don’t have any answers but I think you raise some REALLY good points and some important questions that we should all be thinking about.

I have an intellectually disabled family member - he is obviously disabled and it’s immediately apparent to anyone who meets him that he couldn’t work in regular employment (he does work at a sheltered workshop) and couldn’t manage his finances even if he wanted to so many of your points don’t apply in his case but even so I’ve had people say that his government disability money or the very small amount he earns at the sheltered workshop shouldn’t be used on ‘frivolous’ things like new clothes or outings!!

Why should he not have the dignity of having new clothes when he needs them just because he’s intellectually disabled? And why should he not be allowed to go on an outing or even a holiday just for pleasure? Thankfully he doesn’t understand enough to know that some people think that people in similar situations to him should only be given enough government assistance to exist.

I take a pretty strong line on disability ie ppl on disability should be contributing to the community but your brother would fall into the catagories where I would excuse him from doing so as he is severely impaired.

God Bless,
Bill

 

[Bill_7154]

It took 4 Drs visits diferent Doc each time. A visit to a shrink and a physical thereapist and a two year wait to establish that I was really, truly, genuninely disabled.

All it would have taken was an interview with my ex-Benedictine roomy to tell them 1 my drivers liscence was takemn form me before I left hospital 2 Ican can not bathe or dress myself without a lot of assistence. 3 I am incapable of walking without a walker or quad cane. 4 I have short periods when I space out continually have no idea what is going on. 5 I can start the same book over several times and it is like starting anew each time.

I think sometimes the checkers waste more money with all nthe appointments and delay than they would if they just see the obvious.

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