What i hate about SSI

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Apology to Bea, my aspie senses got the better of me and I did a very narrow reading of your post. I apologize for my above post (still keeping it up for other's benefit), I read one sentence that rubbed me the wrong way while ignoring all the other valuable advice you offered. Again, I apologize for going on a tirade due to one comment. I still stand by my assertion of people on SSI, but I would be remiss in not acknowledging that it was a minor point in a larger picture you were trying to frame.

Thanks for that, Aristophanes.

Actually, being on any kind of disability does a mind warp on you, and this is worth mentioning. First you question if you are really entitled to this benefit. Maybe you COULD work if you just tried hard enough. Then you try to work and fail miserably; or like a lot of autistic people, you hold it together at first but maybe then you have a meltdown. You're mad at yourself, but maybe you try yet again. Another lost job. Now you feel worthless. Someone insists you apply for SSI, or SSDI if you qualify, but to complete your application, you have to write a lot of negative (though true) stuff about yourself, which is really depressing.

For this reason alone, I suggest you have another person work through the process with you. It can be a friend, relative, paid advocate, or case manager in an agency. Most people will get very discouraged by being forced to put all their weaknesses and shortcomings in writing. Having another person help you do this can buffer some of the emotional impact.

The SSI rules are pretty strange. For example if you have a relative pay for groceries or your rent, your SSI can be reduced by up to 1/3 of the SSI. On the other hand that same relative can buy you clothing or or pay for your cell phone, and the SSI will not be reduced. Supposedly the idea is that they consider that you are getting special shared benefits if you are getting free food or shelter covered by a relative. If you live with your parents, the SSI is reduced by 1/3 as well, unless you are paying rent. I believe if you live with another person getting SSI you would get the full amount, but the rules are rather confusing.

there is a bill in congress to do away with the asset limit. it would allow for a large account that you could rely on for disability-related expenses. already there is a pass? program (i think that's the name), where you can save money for school.

I disagree with several of Jenine's statements. I will not enumerate them here, but I'd like to add to what I have said before.

You need to discuss with your doctor, therapist/psychiatrist if applicable, and any others who may be contacted, the different reasons you feel you are disabled, and what sorts of things they would say if contacted. If they are not supportive, get someone else before you try to apply.

Second, you need to be a good writer as well as know what Social Security Administration is looking for, in filling out the "essay section" of the application. This is a place for short, pithy statements of concrete problems interfering with employment. My daughter (who got accepted on first try) described the sequence of problems she had getting out the door in the morning, from dislike of the sensations of showering, to fears of going outside her home. She had to describe what happened in previous attempts at employment and college, that caused her to fail - which is depressing, so a lot of people may not go into enough detail. She described her panic attacks and the sensations those involved. I helped by taking her descriptions and refining them to be concise yet compelling. If you can't write this the right way, get someone to help you, such as a social worker at a disability agency.

Third, you should list every single medical diagnosis you have, even if at first it doesn't seem relevant. You probably won't get SSI for having irritable bowel syndrome, alone; but if you have IBS, severe eczema, panic attacks, suicidal depression with homicidal urges, diagnosed (not self-diagnosed) autism, and sensory issues interfering with hygiene, you probably will be. If you have acne, no, that doesn't qualify for SSI. But if you have acne but continually pick at your lesions due to self-harm or obsessive issues - in addition to everything else - then that does contribute.

Most of us on the spectrum do have several co-morbid conditions, so you have to list them all.

Fourth, you need to complete your application as fully as possible, including looking up doctors, dates, addresses, etc. This is no time to get sloppy.

If you can do all of these things, your chances of success on the application are much improved.

As to whether they give you enough to live on - well, there, I agree, it is something of a game. There are a number of assists you can get in the US and I'm sure other countries. Free bus passes, assistance with utility bills, subsidized housing, government medical benefits, food stamps, food pantries, free limited-minutes cell phone, are some of the things that make this work. If you try to maintain a good relationship with your family and friends, they may give you a number of things you couldn't afford on your own. My daughter was given a tablet computer and a game console that friends had grown out of. Also learn to shop garage sales and thrift or resale shops, for all sorts of household furnishings and personal possessions.

If you're more invested in griping than getting on with it, then, disregard everything I've written. But I may dispute your gripes, not that I don't want to be supportive but you may discourage others from applying for a program they need.

the problem with the current trusts in PA is that the trustee takes 10% of the account in fees every year.

As much as I hate SSI, I would be dead without it. Because of a mental illness independent from suspected autism, I get hospitalized on average once every three months. My anxiety is so severe and can hit me at any moment that I sometimes struggle to even leave the house, and when I do I have to go to a restroom or another quiet area several times due to sensory overload/disassociation. People who tell me to "get a job" do not understand the following:

-I spent 2 years, from ages 18 to 20, actively searching for a suitable job. Every single job that I can do, at least in my area, hasn't even considered me due to my lack of experience.

-I once worked at a Taco Bell for a week and the stress and stimuli of it put me in the hospital.

-If employment was easy enough for me that I could make more money than $733/month, I would. I don't enjoy being poor and the only SSI recipients that love it are the ones who scam the system and collect multiple checks.

As for family, my family cares about me enough to let me live with them for only $300/month, but they are not going to take care of me. They, like so many others, have an ignorant view on mental/social disabilities and the only reason they don't bug me so much about not having a job is because I pay them something.

If this were the 1950's before SSI existed I would either be dead or living in an asylum.


PS Most conservative families are close knit, so they assume everyone is like that. Not the case at all.

I have had about 9 jobs in the last three years, I have been unable to keep and hold down jobs. Other than my Haunted House work as an actor. Yet, that is not nearly enough money, we get shows sporadically with the Murder Mystery and I get 20 dollars for each night I work. But that's two weekends so that's only 40 dollars, plus tips. Alongside the fact that I get paid seasonally 450 for my work at the Haunted House, during the Haunt season. It's still not enough to live off of.

I have also had 8 different housing situations within the last three years. I have been unable to keep a stable living situation.

I am currently fighting for SSI or SSD, but I am told because of my age, I'm 26 and look about 14-17, and that they are benefits to my condition.

So far I have not seen a single Autism benefit to my condition in the workplace, in my relationships, in my living situations.

So, what am I suppose to do?

People tell me to go to work, seems like an easy enough solution. Honestly it isn't. I have worked under the sun for so many different jobs. So many different places. I am either not face enough. Can't cope with the work load. Or consistently harassed by managers.

The "tough love" system in the workforce doesn't motivate me when someone is "yelling" [this is how I feel] at me, about how to work faster and better. It's not motivating, it's degrading and spirals me into meltdowns and anxiety and depression.

So, what am I suppose to do?

There is no perfect solution. It's go through all these loopholes and all these obstacles to prove I cannot function properly. Or try to find another job that I cannot keep.

Neither provides a livable situation. Or a stable life.

Whatever happened to the pursuit of happiness? Whatever happened to everyone having equal rights?

Because this system is slowly killing me mentally.