Punished for being disabled.

gnd567

Est. Contributor
Messages
985
Role
Adult Baby, Diaper Lover, Little
I feel like the U.S. government is punishing people for being born with a disability.
I recently had my first meeting with someone from my state’s Department for the Blind and Visually Impaired since 2008 when I was 17 and they closed my case. I’m now 28 and I wanted to see if there was anything they could do to help me find ways to gain more indpependence: both physically and finically.
I wanted to see if I was eligible to receive full disability and I was curiious to see if I qualified for any type of grant or plan for disabled people trying to start a small business. I want to be able to grow and expand my small business (my band and our publishing company/recording studio) so that I can gain some independence and eventually move out of my parents house.

Here's what I found out.

Because I became disabled before I was able to work (since birth in my case), I am not eligible for full disability. I’m currently on SSI and receiving $663 a month.
The lady told me that I am currently recieiving the maximum amount that someone in my situation is able to receive and that it won't increase.
I can't survive on that. I can't rent a room or pay for transportation, food, bills etc. Not on that.

I was also informed that I can't earn more than $2000 a month (SSI + band gigs) or they will take away my SSI. She also said they can take it away if they find out I have more than $2000 in assets. I also can't get married (not even common law) or they will take my money.

She basically told me that in order to keep my SSI check, I would have to remain in poverty the rest of my life. I can not make enough money to advance. I have to stay here.
She suggested looking into section 8 housing. She said she could help me get a job making pens and pencils with other blind people. She said that might make bme feel like I'm accomplishing something/earning a living.

I'm disgusted. I'm not even allowed to try and make a decent living. I can't.
I don't want to live off the government forever. I wanted help so that I could eventually make it on my own without them. But I'm not allowed. They don't want me to better myself. I wanted a chance to make it like everyone else.

For the last several years, I've given my entire check to my parents to help pay the house payment so that I will have a house to inherit when they're gone. It's our way of at least making sure I won't end up homeless. In the meantime, I use the money that I earn each week from playing guitar in a cover band to buy food, pay my bills and I pay for the gas and tolls for my dad when he takes me to and from my weekly gigs.

This just isn't fair.
 

chuck

Contributor
Messages
686
Role
Incontinent
You need to meet with someone who is on your side: a disability lawyer perhaps. Explain your situation and they may be able figure a way to help you perhaps by using some laws/rules that may not be obvious or other methods.
 

Pawlf

Est. Contributor
Messages
701
Role
Diaper Lover, Babyfur
I can sort of relate as I've been pretty much disabled since birth but to a lesser degree. I was diagnosed with Spastic Diplegia CP at three weeks and suffered a severe left hip injury during adolesence that affects me to this very day. Doing anything physical has been a lifelong challenge for me.

I attempted to seek help from my state's Division of Vocational Rehabilitation (DVR) and they weren't of much help. I ended up finding suitable work on my own and eventually got booted off SSDI but I don't mind.

In a society that is filled with people who take advantage of programs that are designed to help the less fortunate, its kind of no wonder they're reluctant to really help people that REALLY need the assistance so yeah it isn't fair. I'd like to think we all do the best we can regardless of our situation.

I've spent about a decade trying to find a suitable job and finally found one almost six years ago in 2013 working in healthcare administration. Its a job that pays decent and is easy on my half-crippled body. I'd also like to think there's a job for everyone out there including those who may have visual and auditory challenges. It does sound like you're doing what you can.

Best of luck
 

caitianx

Est. Contributor
Messages
3,025
Age
61
Role
Adult Baby, Babyfur, Incontinent
I feel like the U.S. government is punishing people for being born with a disability.
I recently had my first meeting with someone from my state’s Department for the Blind and Visually Impaired since 2008 when I was 17 and they closed my case. I’m now 28 and I wanted to see if there was anything they could do to help me find ways to gain more indpependence: both physically and finically.
I wanted to see if I was eligible to receive full disability and I was curiious to see if I qualified for any type of grant or plan for disabled people trying to start a small business. I want to be able to grow and expand my small business (my band and our publishing company/recording studio) so that I can gain some independence and eventually move out of my parents house.

Here's what I found out.

Because I became disabled before I was able to work (since birth in my case), I am not eligible for full disability. I’m currently on SSI and receiving $663 a month.
The lady told me that I am currently recieiving the maximum amount that someone in my situation is able to receive and that it won't increase.
I can't survive on that. I can't rent a room or pay for transportation, food, bills etc. Not on that.

I was also informed that I can't earn more than $2000 a month (SSI + band gigs) or they will take away my SSI. She also said they can take it away if they find out I have more than $2000 in assets. I also can't get married (not even common law) or they will take my money.

She basically told me that in order to keep my SSI check, I would have to remain in poverty the rest of my life. I can not make enough money to advance. I have to stay here.
She suggested looking into section 8 housing. She said she could help me get a job making pens and pencils with other blind people. She said that might make bme feel like I'm accomplishing something/earning a living.

I'm disgusted. I'm not even allowed to try and make a decent living. I can't.
I don't want to live off the government forever. I wanted help so that I could eventually make it on my own without them. But I'm not allowed. They don't want me to better myself. I wanted a chance to make it like everyone else.

For the last several years, I've given my entire check to my parents to help pay the house payment so that I will have a house to inherit when they're gone. It's our way of at least making sure I won't end up homeless. In the meantime, I use the money that I earn each week from playing guitar in a cover band to buy food, pay my bills and I pay for the gas and tolls for my dad when he takes me to and from my weekly gigs.

This just isn't fair.
I understand the situation.
I am on SSDI, because I have a work history as a 61 year-old with Cerebral Palsy and Autism.
I am not allowed to make > $500.00/month "extra".
I have no life's savings.
Here in New Hampshire my $1,442.00/month does not go very far.
My younger brother and I own a manufactured home, but not the land it is on in our mobile home park.
I pay $360.00/month rent.
It pays for the communal trash pickup and snow removal.
Sigh...
I have an Upper Middle-Class Education in Electronics Engineering.
But, I live in abject poverty.
I do not own a handicapped-adapted car anymore.
I am dependent upon others to get me out into the community.
The plan is for me to "age in place".
I tried hard to be independent and make it on my own, but it was not to be.
I accept this at this time in my life.
 

gnd567

Est. Contributor
Messages
985
Role
Adult Baby, Diaper Lover, Little
I am dependent upon others to get me out into the community.
The plan is for me to "age in place".
I tried hard to be independent and make it on my own, but it was not to be.
I accept this at this time in my life.
And that’s exactly what they want me to do. To just “accept it.” But I can’t just “accept’ it. I’m 28 and hope to be here for a long time. I want a life to live.
 

Cottontail

Sailing, sailing, ...
Est. Contributor
Messages
4,364
Role
Adult Baby, Diaper Lover, Sissy
I can't claim to relate, but I do sympathize. Boiling down what you said about SSI: If it's doing as little for you as it sounds, then there would seem to be little point in struggling to keep it, no? It sounds like the only meaningful struggle is to find work--which, I gather is difficult. I don't mean to trivialize that. I can only think to offer an anecdote, which is that, as an engineer working for a large company, I had the opportunity to work with quite a few senior and financially successful individuals who were disabled in various significant ways, including multiple blind engineers and one who was a quadriplegic and wrote software using a mouth joystick. I guess my point is: If you have a marketable skill or the desire to grow one, you may be somewhat less different from your non-disabled counterparts than you think.

Doubtless being blind comes with complications, but that aside, you still have to set goals, network with people who can help you reach them, and work like hell to get there. I certainly agree that life isn't fair. I've had my own dealings with that, though not in the form of physical disabilities. Nevertheless, I can assure you that if you focus on the not-fairs and assume that they're the ultimate reason why you haven't had the success you'd like to have, then you're just finished. Done. Going nowhere.

Your stated interest (music) is one that seems, at least from my vantage point, quite forgiving of the visually impaired. If in doubt, I would suggest doing what other aspiring 20-somethings who want to get into the music business are doing. And if it doesn't work out, I'd be more inclined to blame an inherently challenging and competitive business landscape that I would to blame your disability. By virtue of its being right there with you at all times, and being something that makes you different from many of those around you, your blindless may be doomed to be your first choice of a proximate cause for just about any bad thing that happens to you. I hope not, though. Because I'm pretty sure, no matter what you try to accomplish in life, most of the challenges you'll face will be the same ones faced by all those with similar goals, regardless of physical differences.

I know. That's all quite easy to say. I do believe it, though.
 

Calico

Est. Contributor
Messages
4,785
Role
Adult Baby, Diaper Lover, Little
Being on it sucks and so is having a disability. I don't want to be on it either but I am not sure how I am going to earn more money and if I lose my job, I am screwed because finding one isn't easy. I have a disability review coming up in a few weeks to see if my condition has improved. I know this is just random and they do this to everyone on SSDI. This is my first one ever.

I would also check with your state law to see if you are allowed to save money up to $100,000. A new law had came out that allows people on disability to save. I forget what it is called but I think there is a criteria for to qualify for it. If I remembered the name, I would have mentioned it so you look more into it. Maybe someone else here will know.
 

willnotwill

Est. Contributor
Messages
1,752
Role
Adult Baby
Understand that like retirement, regular SS disability stems from having worked a qualifying amount. It has nothing to do with when you were disabled. It has to do with that you never worked. You could have been blinded at 50 and if you never worked before, you'd not qualify.

SSI is needs based. You have assets or income, you'll not qualify. It's a final stop gap, not a handout for having a disability that doesn't keep you from getting income. My stepson is profoundly disabled. He hasn't ever held a job (most jobs won't deal with you being hospitalized for months out of the year). He does do a decent amount of volunteer work when he is able. I've worked with completely blind and also with profoundly deaf coworkers over the years. These disabilities themselves do not necessarily mean you can't earn. The fact that you have a plan to make a living with your music interests indicates that you do too.
 

DanielW

Est. Contributor
Messages
844
Role
Little, Incontinent, Other, Private
There are workarounds for the $2000 limit. Money can be held in a Special Needs Trust for use on your behalf for expenses, entertainment and most other things that would improve your quality of life. That might mean transportation and musical instruments also in your case as well.

I'm not sure of your situation, but I don't know that inheriting a house would be the best for you. with your income being what it is now, could you afford property taxes, insurance, home repairs, etc. in addition to monthly utilities like water/sewer/garbage?

Have you looked into vocational training? I don't know what level of disability you are dealing with, but it might be possible to learn to use either public transport or the door to door option disable citizens who are otherwise unable to access the regular service. If you can speak well enough, and have basic computer skills, even a part-time call-center or tech support job would boost your income a bit.

Please get in touch with someone who can give you better information and support than you are getting now. Social workers don't know this stuff, a lawyer who does estate-planning for people with disabilities would be ideal.

While its great that you want to help your parents out and pay your own way, giving them all your money every month is no plan for your future, if it leaves you with a house you can't afford to keep up and later, elderly parents.
 
Last edited:

gnd567

Est. Contributor
Messages
985
Role
Adult Baby, Diaper Lover, Little
Boiling down what you said about SSI: If it's doing as little for you as it sounds, then there would seem to be little point in struggling to keep it, no? It sounds like the only meaningful struggle is to find work--which, I gather is difficult.
The reason I'm trying to keep it is so I'll have something to fall back on

I guess my point is: If you have a marketable skill or the desire to grow one, you may be somewhat less different from your non-disabled counterparts than you think.
Well, musician is my only real "marketable" skill. I didn't finish school for various reasons. Plus. music is me. I've had an absolute passion for playing musical instruments and singing since the age of two. It's all I've ever wanted to do. It's why I was put on this earth. The public and private school systems both failed me and thus I never finished high school. They were no longer willing to adapt to help me.

Your stated interest (music) is one that seems, at least from my vantage point, quite forgiving of the visually impaired. If in doubt, I would suggest doing what other aspiring 20-somethings who want to get into the music business are doing. And if it doesn't work out, I'd be more inclined to blame an inherently challenging and competitive business landscape that I would to blame your disability.
I've been playing music since the age of two and playing professionally from the age of fourteen. I've had various bands of my own and been several others. I currently have my own original rockabilly/surf-rock band. We formed a small publishing company/recording studio/label to release our music. We've released four albums: all of which have received good reviews in music blogs and all have gotten a small amount of internet radio airplay but it doesn't pay anything and while we go over amazingly well in front of an audience, trying to grow a decent sized following in this area has proven to be quite a challenge. Neither the band nor myself have the money or the connections to really push our music/product out there. We can't afford to play out but a few times a month because it doesn't pay well enough for any of us to miss work.
My main "job"/gig is playing guitar 1-3 nights a week for a couple of local cover bands- neither of of which are interested in going anywhere.
That's okay. I'm only in those bands for the money. But the money isn't great. My dad takes me to the gigs and picks me up afterward and helps me get my gear in and out of the clubs. This means my dad has to drive to the venue to drop me off, then back home, then back to pick me up and then finally back home again. That's about 2-3 hours of time that he has to spend hauling me around. The least I can do for him is help pay his gas and tolls. After all is said and done, the $100 I earned is now more like $50-60. It's not that profitable.

Basically, my only skill is a musician, and I don't have the means to really to pursue my career.
 

gnd567

Est. Contributor
Messages
985
Role
Adult Baby, Diaper Lover, Little
Understand that like retirement, regular SS disability stems from having worked a qualifying amount. It has nothing to do with when you were disabled. It has to do with that you never worked. You could have been blinded at 50 and if you never worked before, you'd not qualify.

SSI is needs based. You have assets or income, you'll not qualify. It's a final stop gap, not a handout for having a disability that doesn't keep you from getting income. My stepson is profoundly disabled. He hasn't ever held a job (most jobs won't deal with you being hospitalized for months out of the year). He does do a decent amount of volunteer work when he is able. I've worked with completely blind and also with profoundly deaf coworkers over the years. These disabilities themselves do not necessarily mean you can't earn. The fact that you have a plan to make a living with your music interests indicates that you do too.
I don't want a handout. But I can't see myself living on the little amount of money that I'm receiving. I'd like to eventually be able to earn enough to where I don't need their help anymore. But I can't afford to spend the money that it would take to get my band to the level it needs to be at where I could earn a living from playing music. That's why my dad is driving me around at al hours of the night, picking me up from bar gigs with cover bands so that I can make enough money to afford food, clothes, phone ect.
 

gnd567

Est. Contributor
Messages
985
Role
Adult Baby, Diaper Lover, Little
There are workarounds for the $2000 limit. Money can be held in a Special Needs Trust for use on your behalf for expenses, entertainment and most other things that would improve your quality of life. That might mean transportation and musical instruments also in your case as well.
Special Needs Trust? I need to talk to someone about this because I have several questions/concerns. The transportation part would be kinda hard because I would require more than just a ride. I need somone to help get me and my musical equipment in and out of the venue and onto the stage. I don't think most services would really help me there.
Have you looked into vocational training? I don't know what level of disability you are dealing with, but it might be possible to learn to use either public transport or the door to door option disable citizens who are otherwise unable to access the regular service. If you can speak well enough, and have basic computer skills, even a part-time call-center or tech support job would boost your income a bit.
Yes. Many times. But it's just not for me. They offer jobs like call-center jobs or making pens and pencils but I just can't do that.
I've always known that music is where I'm supposed to be and what I'm supposed to be doing. I've been playing professionally for more than half of my life. Even as a toddler I was able to copy melodies nearly note-for-note on my toy guitar. Music is in me. It's who I am.

I'm not sure of your situation, but I don't know that inheriting a house would be the best for you. with your income being what it is now, could you afford property taxes, insurance, home repairs, etc. in addition to monthly utilities like water/sewer/garbage?
Hmm... Yeah, you've got a point there. I definetly couldn't afford any of that stuff in my current situation.
While its great that you want to help your parents out and pay your own way, giving them all your money every month is no plan for your future, if it leaves you with a house you can't afford to keep up and later, elderly parents.
Yeah, you're right. Unfortunately, I kind of have to at this point. My father is disabled and can't work and my mother took a major pay cut a few years back when she was laid off from work and had to change jobs. You see, the three of us are now dependent on each other. I had to help because otherwise we couldn't afford to keep the house going and we can't afford to downsize at this time. I don't have the means to move out and live on my own and if I stopped helping my parents out, w'ed all be out of a house. We're kind of stuck.
I don't know what I am going to do when they get older. Mom's in her mid 50s and dad's in his mid 60s. I don't what I'm going to do in another 10-15 years. I feel like my hands are tied.
 

daddyconnor

Est. Contributor
Messages
196
Role
Carer
So one thing worth looking into is federal jobs. They actually have job fairs for the disabled. I have 2 legally blind friends working in the department of defense. College degrees aren't always required, but they'll pay for school if it is related to the job. Plus even as a gs-5 target-9, you would pull in stable income and have amazing benefits. Look into it if you are so inclined.
 

daddyconnor

Est. Contributor
Messages
196
Role
Carer
By the way, disability gets you preferred hiring status. They give you everything you need to succeed, from auto readers to specialized training.
 

Calico

Est. Contributor
Messages
4,785
Role
Adult Baby, Diaper Lover, Little
Sometimes you have to work jobs you can do, rather they are your interest or not. It's about survival. If you want more money, you will do whatever you can do so you are not so poor. I know they have services that help people with disabilities get jobs that suit their needs.
 

Chimera

Est. Contributor
Messages
339
Role
Adult Baby, Diaper Lover, Babyfur, Little
I am also on SSI for Autism Spectrum Disorder and I just want to say you can work while you have it! In fact, there is a program within SSI called "Ticket to Work" that allows you to work for a set amount of time (I think it varies state-to-state) while also letting you keep your SSI benefits. This ended up being a lifesaver for me and my family when our gas got shut off and I was able to put $400 on the bill to get it turned back on.

Unfortunately though I started making too much money when Michigan raised the minimum wage, causing me to lose my Ticket to Work eligibility, so I had to cut back to part-time work to keep part of my benefits. Thing is, it wasn't the income I was necessarily worried about, it was losing my Medicaid coverage.

Then I got a good paying job as a 3rd shift faculty/restaurant maintenance guy and unsurprisingly I lost my benefits but thankfully they let me keep medicaid until I quit that job and went back to college. It was really easy to get my SSI back I just let the social security office know I stopped working and I started getting my SSI benefits again. Which has been very beneficial as it allows me to have complete concentration on College, I tried working my 3rd shift full time job and doing my college assignments at the same time for the first semester, I couldn't do it. I even ended up failing one class and losing a scholarship valued at $1,000 which was a complete shame. When you work a physically demanding job, obviously the last thing you wanna do is jump on the computer and do homework!

Because of the complexity of your current situation (I saw that you are pretty much helping your family keep your home, which I understand I'm pretty much in the same boat right now) My suggestion is to at least ask SSA about their Ticket to Work program for SSI/SSDI recipients. It would possibly allow you to save up money as it will allow you to keep your benefits while you work and you can use said money to help further your music career.

That's just my two cents anyways, best of luck to you. I know life sucks with a disability, I can't even imagine what life is like to be blind. All I know is: don't sell yourself short, take advantages of the programs available to help you get ahead, and do your best to follow your dreams and ambitions. True change can happen when you realize the world is screwed up, but your world doesn't have to be.

-Chimera
 
Last edited:

KimbaWolfNagihiko

Pokemon Trainer in, err, Training... Pants
Est. Contributor
Messages
3,590
Role
Adult Baby, Diaper Lover, Babyfur
I am also on SSI for Autism Spectrum Disorder and I just want to say you can work while you have it!
Was it difficult to get approved for SSI for your autism? As in, were you at first denied and had to appeal? I'm also currently trying to get it for autism and am awaiting their decision.

Admittedly, I find it confusing that they allow you to work while you're on it, but to be approved for it you have to be considered too disabled to work. That doesn't make sense to me. I have worked for short periods in the past and I guess I worry that's going to put me at a disadvantage.
 

Chimera

Est. Contributor
Messages
339
Role
Adult Baby, Diaper Lover, Babyfur, Little
Was it difficult to get approved for SSI for your autism? As in, were you at first denied and had to appeal? I'm also currently trying to get it for autism and am awaiting their decision.

Admittedly, I find it confusing that they allow you to work while you're on it, but to be approved for it you have to be considered too disabled to work. That doesn't make sense to me. I have worked for short periods in the past and I guess I worry that's going to put me at a disadvantage.
I wish I could tell you in detail but my mom pretty much helped me get SSI when I turned 18. All I remember is I had to go visit a psychiatrist who evaluated me and agreed that my autism was disabling enough to get SSI. So if I'm not mistaken, they largely base their decision upon what the psychiatrist thinks.
 

Calico

Est. Contributor
Messages
4,785
Role
Adult Baby, Diaper Lover, Little
I wish I could tell you in detail but my mom pretty much helped me get SSI when I turned 18. All I remember is I had to go visit a psychiatrist who evaluated me and agreed that my autism was disabling enough to get SSI. So if I'm not mistaken, they largely base their decision upon what the psychiatrist thinks.
That was how I pretty much got on it but anxiety was also mentioned and OCD when my mom signed me up for it.
 
Top