Supplemental Security Income (SSI): A Voice of Experience

There's a myth out there that parents are seeking an autism diagnosis for their children to "collect a good SSI payment each month." I'm not making that up -- see my previous post, Sullivan at LeftBrain/RightBrain, and Caffeinated Autism Mom, this TPGA Facebook page -- especially read the comments.  This one woman articulated a myth that many have heard.

SSI stands for Supplemental Security Income and it is a federal benefits program for the disabled.  

Michael Simpson (@leftcoastman57 on twitter) left two comments (one, two) that deserve to be a post in their own right.  I've edited the comments slightly for clarity.

I spend time every month, on a volunteer basis, assisting the mentally ill (or parents, family or caregivers) with obtaining disability benefits. Usually, I assist those with diseases such a severe bipolar disorder or psychosis, but occasionally parents with autistic children (sometimes, as caretakers of autistic adults).

SSI and SSDI (disability benefits that one earns by contributing to the Social Security system, and usually pay a lot more) are need-based, with certain income ceilings. 

Let me make this clear. Receiving SSI (or SSDI, which are disability benefits that one earns by contributing to the Social Security system, and usually pay a lot more) is not easy. You do not just walk down to your local Social Security office, and say, "I'm here, please write a check."

The first step is a very long application. That can be done online (this is where I assist, because I know the medical jargon, and assist the applicant in running down names of doctors, pharmaceuticals, hospitals, and diagnoses). It takes 90 minutes, and it is complex. To be honest, I'm pretty smart, and it takes a long while.

The second step is that the Social Security Administration then sends out requests for information from all of your health care providers (because you have provided a release in the application). They gather that information, and this may take a while, since physicians don't consider this a high priority. This step usually happens 60 days after the initial application.

The third step is that the Social Security medical team reviews the application. One of three things may happen.

1. They may accept it, and begin paying you. This may happen, but I've been doing this for a couple of years, and I've yet to even hear a rumor of a friend of a cousin of a next-door-neighbor who's had that happen. But they could. My personal, non-evidentiary opinion is that they reject it to make people work at this application.
2. They may ask you to visit one of their medical examiners who will review your case and your physical and mental status.
3. They may reject your application. You can appeal, and are encouraged to appeal.

This may take up to six months. To get SSI, you have to prove that you or a child is disabled. And the burden of proof is on you. So if you have three licensed pediatricians along with three pediatric psychologists who all agree that your child is autistic, the Social Security administration is going to have a hard time rejecting that. This is an evidence-based system, not one based on opinion from either the bureaucrats or the applicants. Sure there are mistakes made on both sides, and it is frustrating when it happens.

One more thing. It is not permanent. Social Security regularly reviews the income of the family (well, that's automatic), the medical diagnosis, and other circumstances, all of which may cause the SSI payment to be revoked. And cheating is a Federal Crime, so if, assuming bad faith somewhere, an applicant uses Dr. Smith who always signs off on these things, eventually they get caught.

SSI isn't intended to cover the medical needs of an autistic child. Medicare or Medicaid (or in California, MediCal) should cover the medical needs. SSI should be used for education, clothing, food, etc. Yeah, I know, still not enough. I wish all of us were rich with outstanding private insurance so that we wouldn't have this discussion.

 SSI is not a way to get rich. It is there to help the truly needy in our system. It does provide Medicare or Medical (Medicaid in other states). It does help with education. It is a good thing. I'm sure a tiny percentage of applicants are trying to game the system. Of course, the system is set up to block that (making it more difficult for legitimate claims), and it is hard, very hard, to get around it. I'm pretty much an expert on SSI, and I can't see one way to get through it.

 

Next, I need to write a post on destigmatizing SSI. It's not a handout, it is a necessary support to families with extraordinary costs from disability.

Comments

[jillsmo]

Good stuff, Liz. Thank you for helping to educate people who are sadly uninformed :)

[victoria]

Wow, it wasn't like that for us at all. Our application took like ten minutes, we went in for an interview and they got all his doctors' info, and then we got paid the next month. Our kiddo doesn't even have his official diagnosis. Is Oregon just easy like that?

[Jennie B]

Very informative. After the email I received from the original LAT commenter, I'm pretty sure she is a bit unstable herself and seeking attention, but an eye opening post regardless!

[barb revis]

it took 6 months for my son to start getting his SSI...he had not gotten his official diagnosis but had scored in the autism range at the time of the application and was diagnosed shortly afterward. I have some family members that think of it as living off of welfare, but I do not...I am also physically disable and with what I get and he gets (he draws part of his dad's SS so he only gets a small part of SSI) is not even enough to cover everything that he needs to help him. medicaid does cover his services but not the shirts he chews up, or the shoes he tears up from toe walking and the corrective braces he has to wear to help him with that...nor does it cover the other things he needs to make his services work for him. unless someone lives it, they do not understand and the person that wrote this does understand this very well because of the position he is in...thanks for a great read!!!!

[ItsBridgetsWord]

I went through this process twice. First I did this for my then spouse for disability due to mental illness. He was one of those rare cases who got approved without further follow up needed. I was told my application letter on his behalf was "eloquent, direct, and compelling". I therefore felt well equipped to handle my son's SSI application. Applying for SSI due to autism, I was told there was "no chance" my son would ever be approved. They said his case was judged on a "work model" with school equating to a job. Since his grades were good, any other needs, no matter how great, were deemed irrelevant.

[Frank E.]

I think these children deserve medicaid and medicare, but why do the deserve to get a check any more than some other child who is poor and struggles through lif? As I see it all SSI has done in a lot of cases is take the place of welfare....I know too many people who won't and never have worked and somehow all their children and themselves get SSI. They can go camping, do sports, ride motor cycles, do yard work, clean and cook for themselves, but can't work a job, come on, get for real... Imagine that!!!!

[chavisory]

Frank E.--these children get SSI because the costs and strain of providing adequately for children with severe disabilities can be a great deal more than for non-disabled children. They may need not just medical care (covered by Medicaid), but specialized food, clothing, equipment, and educational services which are covered by neither Medicaid nor private insurance. It's a lifeline to keep a family from being impoverished by the needs of a disabled child, and it is not a luxurious amount of money.

[Frank E.]

"chavisory" I agree, but like I said most are not that disabled. They run, play sports, and do the things that most kids do, while their parents set around and smoke dope or do drugs and say they can't work either. Wake and look around you and you will see that this has taken the place of welfare for most. I'm not saying all but most. I worked at a car lot for 15 years and believe me I've seen thousands of people come through to buy a car and when I get to their income, low and behold, they get SSI for themseves and all their kids, food stamps, housing assistance and medicaid and medicare. Yet they are able to get out and run around and buy cars and have more children so they will get a bigger check. Cut me a break with your bleeding heart BS. There is a real need for SSI, but the problem is, it is hard to get for the ones who really need it because of those who are working the system and getting checks they don't deserve. If you would do a study you would find that the families who grew up on welfare are now getting SSI, imagine that.. enough said, I'm in the real world and have my eyes open, you need to open yours and work for tighter regulations for people who work the system.

[Amy Caraballo]

This is interesting to me because in our state (PA), you cannot get SSI unless you meet the income limits which are the same for all citizens in our state. Children with disabilities do qualify for Medicaid through a loophole. Only the current MR diagnosis qualifies for SSI without income limitations.

It seems the states are allowed to tweak what is considered "need."

[Stephanie]

As a recipient of SSI on behalf of my boys, I can tell you that it's not a lot. Even at maximum levels, if SSI were all the income we have, we'd still live well below the poverty level and that's with three boys receiving SSI.

It's supplemental income that is to be used to offset some of the expenses for associated with caring for children with disabilities that are not covered by other sources (at least, when it's received by parents) and is not meant to be enough to live on.

During those times when government assistance was the only source of income, including SSI, medical assistance, and Foodstamps, we were always living below the poverty level.

You don't even get comfortable living off of government assistance without committing fraud (admittedly, there are people who do that), let alone get rich.

[David N. Brown]

"You don't even get comfortable living off of government assistance without committing fraud (admittedly, there are people who do that)..."
And even the frauds are, in all likelihood, going to end up in poverty.

[Frank E.]

Problem is some people just don't want to work and don't care if they are below the poverty level or not. They will live in a shack and let their children live in poverty as long as someone or the government pays their bills. All that is fine for them as long as they can lay around and do nothing except play on the computer, make babies and smoke dope. I know this for a fact because I personally know people like this. Also there are many who draw the SSI and live with some who has an income but do not report it, or work under the table and not report their income. Like I said it is needed in some cases but I think about 80% of the people on SSI are just working the system while people who really need assistance like some of our older citizens can not get any help because they do not know how to work the system. Those skills are handed down from generatoin to generation, why would you have three children who quailfy for SSI in one household, come on give me a break. You have three children now and like many others will probably have 4 or 5 in the next couple of years who will somehow qualify for SSI. Give me a break.....

[Liz Ditz]

Frank E., you've made your point: you believe there are a lot of SSI moochers. And it is just that: your belief. You don't have any evidence or data, just repetitions of your beliefs.

It's not relevant to this discussion, which is about children with significant cognitive and behavioral disabilities related to autism, and their parents qualifying for SSI (or not) to off-set the family's increased expenses.

Come back with evidence.

[Stephanie]

Frank E.

Both my husband and I were raised in the middle class. When our children first demonstrated delays, we concentrated our efforts to getting them diagnosed and getting them services. We didn't even know they might qualify for SSI until the staff at one of the medical facilities we took our children to directed us to the Social Security office as a possible means of getting their medical bills covered, because the insurance we carried wouldn't cover the facilities qualified to make the diagnoses--they were all out of our "system."

There are people who have accessed government assistance programs across generations, but you show your prejudice when you assume that I am one of them, without a knowledge of me.

Perhaps it's a lack of creativity on my part, but I can't even imagine how to go about committing fraud to get SSI. Everything is documented. My boys' diagnoses are documented. They receive on-going therapy in school and at home, which is also documented. I wouldn't even know where to start to make it up. It's all checked and double-checked. You need doctors, teachers, and therapists willing to sign off--legal testimony--that the child in question has substantial delays that impact quality of life to qualify. It's not a simple form that you can fill out, say you're poor, and get free money. I have three children who qualify for SSI, because I have three children with substantial developmental delays that impact their quality of life. Statistically speaking, we're not even outliers.

By the way, knowing people personally who live unethical lives doesn't mean that anyone who receives the same benefits they do live equally unethical lives. Apply that "logic" to retirement benefits, then only look at those who are wealthy yet collect Social Security, and you could advocate that nobody needs Social Security. Yet, I've known many people who live very ethical lives, who worked hard as long as they were able, and now need this safety net just to get by because they didn't save enough for retirement or their retirement funds were wiped out by the recession.

If you choose, in your prejudice, to seek out and find anecdotal evidence to support your hypothesis, you'll no doubt succeed. But it only proves your bias, not your hypothesis.

[Frank E.]

I do agree that there are many families who deserve to get the help needed and possibly in your case if what you say is true then I would be the first to say give you the help you and your children deserve. My complaint is their are so many people who work the system that you can't get the help you deserve, in other words I think people who truely qualify should get much more than the small checks they are getting. You can't compare retiring to SSI, because those people who draw retirement payed into the system for years and deserve their retiremnet checks. I can say there are a lot of people who paid into the system for years and now retired who can not afford insurance, so they do not get the meds and care they deserve. If so many lazy people would get off their butts and go to work instead of living off the system, then maybe those people could also get what they deserve. This is not prejudice, it is fact because I personally know people who are SSI bumbs including I'm sorry to say people in my own family. I'm sure if you open your eyes you will also see the corruption all around you...

[Chris]

Frank E.:

I'm sure if you open your eyes you will also see the corruption all around you...

You still need to provide evidence for your statements.

[Stephanie]

Frank E.

I'm not comparing retirement benefits to SSI, I'm comparing two illogical, unreasonable, and unproven arguments, one you are spouting and the other you were quick to argue against.

You personally knowing people who fit your description, which we have to take your word alone on as being true, doesn't make it "many" and it certainly doesn't make it "most." Besides, those people living off the system are not the ones who make the rules for Social Security. Politicians do that.

[Frank E.]

Stephanie you are the one who brought up the retirement benefits, not me. And yes maybe from personal experience I have seen the abuse of people getting SSI, but for the last 15 years I have seen it and it makes me sick. You are right it is the politicians who right the bills, but it is the lazy people who work the system. You would think you would be on my side with this opinion, because those people are causing you to only get half the money you need because they are draining the system dry like leaches. Don't be such a bleeding heart and wake up to smell the roses....

[Chris]

The plural of anecdote is not data. And the evidence in is the data... so just post the evidence.

[Stephanie]

Brank E.,

I brought up retirement to show your bias. Your response was very predictable, and yet some of the people making the same arguments you do regarding SSI make those arguments regarding SS. You choose who to believe in order to support what you already believe; this is not reason, it's prejudice.

I don't share your bias and there's little real evidence to support your position, so as a reasonable person I cannot agree with your premise. My position is not based a bleeding heart; it's an informed opinion backed up by facts and formed with compassion.

[Frank E.]

Do some reading here....the proof...http://www.cato.org/pubs/pas/pa-224.html

[Frank E.]

I have posted the evidence for you Chris and Stephanie, but I guess you are blind to the truth, especially since you are getting the money from SSI. I don't understand the extra stuff that your children need more than any other child. The schools have the special needs programs for free, you have medicare and medicade to pay for the meds and doctors. what other expenses do you have, how about explaining to me all the extra expenses you are talking about. Some do who have children in wheel chairs and need some help there, but even then SSI pays for just about everything including help to come in if needed. Now I could see the money needed when the child becomes an adult and decides to live on their own, then they would need the help with living expenses, but til then how about letting me know what your child needs that any poor child doesn't....Read the report if you dare and have a nice day...

[Chris]

Excuse me. I must have missed the third party links to unbiased sources that you posted as evidence. All I see are you whinging on with your opinions.

Having spent lots of money on speech therapy not covered by insurance, hospital bills that were not covered by insurance, and having the child be deemed to able for inclusion the state's Department of Developmental Disabilities I have no idea what you are going on about.

Also, we have had friends deal with those issues. Did you know that medical insurance does not cover hearing aids for hard of hearing children (found out when daughter's friend lost them in our house)? Oh, yeah, of course, I forgot that is all taken care of because the school district provides sign language interpreters.

Now, where is that evidence again? Be sure that the link is from a real governmental agency that overseas the data, or just the title, journal and date of a paper outlining the use of those services (you can also just post the PMID number from PubMed).

[Chris]

Oh, I just noticed the Cato link from 1995. Um, yeah, what I said still goes. Do get some of that unbiased evidence, either from government oversight agencies or peer reviewed literature. Not sixteen year old opinion pieces.

Because as I looked at some of that opinion piece's references I found more recent ones. Ones that showed that there have been changes going on in the last decade, and that the programs are always being revised. There are reports on how to improve the system, like getting better funding for CDR (continuing disability reveiws). Here is one that I found (a preliminary report, with a final one due in April 2012)
http://www.gao.gov/assets/590/585946.pdf

Which says, emphasis added:

The numbers of children applying for and receiving SSI benefits due to a mental impairment has increased over the past decade and now comprise a growing majority of all child beneficiaries. While more than half of child applicants are denied each year, children with mental impairments, such as autism, have represented a growing share of those medically allowed for benefits--increasing from 60 to 67 percent between fiscal years 2000 and 2010. Factors including but not limited to the rising number of children living in poverty and increased diagnosis of certain mental impairments may have contributed to such growth.

It also says that when continuing disability reviews are done, a significant percentage of children with benefits are then deemed ineligible (from one quarter to over 80% depending on category).

You will note that issues stated in that preliminary report were noted by several of the people who have commented on this thread. The ones that you seem to have ignored.

Actually, my son has never qualified due to family income (even though he has a severe speech/language impairment). But in a couple of years when he is too old to qualify under his father's health insurance plan, we will be making an application for disability. But that is one that was discovered when he was fourteen, hypertrophic cardiomyopathy with obstruction. This means he cannot run and play, and in the last few months not even walk to the bus stop. He has been taken to the hospital by ambulance, and has been referred to yet another specialist cardiologist. Much of this is not covered fully by health insurance. Plus, despite attending community college classes, his heart condition coupled with his speech/language issues may prevent him from ever holding a job. We expect him to always live with us, and perhaps have a family member take care of him when we cannot (it means we will be setting up a trust).

So, really, do come up with the real evidence. And perhaps you should do some real research on children, disabilities, and the Individuals with Disabilities Education Act. Suggested resources would include books like The Willowbrook Wars, Train Go Sorry, Dangerous Pregnancies (Leslie Reagan), Unstrange Minds and the Thinking Person's Guide to Autism.

Then come back and make more intelligent comments on these issues.

[Frank E.]

And as I stated, which most of you have ignored,there are many children and adults that are very deserving of the benifits. The problem is that there are so many who cheat the system that your son probably won't get all the help he so deserves. That is the whole point of my discussion here. There are to many people who do not deserve the money they are getting. Still no one has explained to me what all the extra expenses are for a child with autism compared to any other child..When I grew up no one ever heard of autism, ADD and ADHD but now that you can get a check for your child if he is diagnosed for it, there are millions of cases. Not saying all are BS but come on give me a break....Wake up people.!!!

[Chris]

Have you ever heard of speech therapy? If you have not, then you did not even read my reply. As such there is no more need to educate you (especially since I know you have not even gone to the library to check even one of the books I mentioned).

For more information try this post:
http://photoninthedarkness.com/?p=250

[Frank E.]

Well where I come from that is paid by the schools not the parents. And why can't you take an hour out of your day to teach your child to speak correctly, the library will show you how if you don't know how.

[Chris]

School therapy is not enough. Also, it was by having a child with a severe neurologically based communication deficit that I learned to depend on professionals (he needed at least twice a week intensive therapy).

I also did scour the library, and found very little (I actually had to ask them to buy this book).

You keep revealing that you are totally ignorant on the issues under discussion, and what is worse is that you refuse to open your mind and educate yourself. You can still redeem yourself and start reading the list of books I posted. Here are some others:

Conversations With Neil's Brain: The Neural Nature Of Thought And Language

Anything written by Oliver Sacks

Making Peace with Autism: One Family's Story of Struggle, Discovery, and Unexpected Gifts

Deaf Like Me

Not Even Wrong: A Father's Journey into the Lost History of Autism

A Brief Tour of Human Consciousness: From Impostor Poodles to Purple Numbers

The Tell-Tale Brain: A Neuroscientist's Quest for What Makes Us Human

[Frank E.]

The only reason you are defending the SSI welfare is because you are getting the money. So I rest my case. Good luck to you and all yours. I'm done here because this is a lost cause to try to discuss this with people who are getting the checks. Happy New Year.

[Chris]

I told you before we have too high an income to qualify. You never provided any evidence there was much fraud in the system (and if you had read the link I provided, you would have learned that the fewest percentage of re-evaluated families that lost benefits were for autism).

You are continuing to prove that not only do you not read the replies, that you have a closed mind and refuse to learn.