Sunday, April 28, 2013

The Autism Social Security Fail

This is one subject that I didn't really think about much until recently. Now, I must vent. For those who have not read my book which this blog is based on, I have a 14-year-old son with regressive autism. He was healthy and then he wasn't. In our lovely state of Nevada and others, there is a program called Katie Beckett, which provides services for children with autism, among other things. One of the steps in order to get Katie Beckett is to first be denied from SSI (Social Security). So, since my husband started his own business two years ago and I work part-time, we have no health insurance except for a major medical plan that we pay for. After friends suggested that I apply for Katie Beckett because it would pay for speech therapy, occupational therapy, medical and dental, I thought, why not?
I began the process by applying for SSI, expecting to be denied. Because my husband is self-employed and our income was crap for the past two years, we had a chance in qualifying for SSI disability benefits. I had to send mounds of paperwork and even though we had autism diagnoses from a few doctors and the school district, they required me to take my son to one of "their doctors" to confirm that he has autism. No problem. They sent me a letter with the date, time and location. Now, when they said "doctor" I thought they meant Medical Doctor. Not so. They sent us to a shrink! This was my first tip off of the fail. Regressive autism is MEDICAL, not psychological. 
So, my son and I arrive at our appointment, and this gray-haired relic greets us, and hands me a stack of paperwork to fill out, explaining that I fill out part of it, and then I have to ask my son to answer questions to see how much he knows for the rest of it. No problem. The first page instructs that the questionnaire is for people ages 0-17. What? Are you kidding me? The same test for everyone? FAIL! These people know nothing about autism, do they?
After filling out my portion, I got to the sections where I had to see what my son knew. I couldn't help but laugh out loud from the waiting room. Some of the most memorable questions were "Who is the President of Japan?" "What is the monetary system of Britain?" Most people I know wouldn't pass this test! I don't even know who the President of Japan is. After leaving most of the questionnaire blank, because he didn't know the answers, Dr. Relic, who walked at a snail's pace, came out of his office to check on us. I complained about the "test" and said it didn't reflect his knowledge and ability, to which he said, "Just answer what you know he knows." Fine. Done. Are we done yet? FAIL!
Next, we are asked to follow Dr. Relic into his office for more fun. He proceeds to ask me about my son's history, and I honestly told him that he was a perfectly healthy baby and that he had a perfect 10 on his APGAR score at birth, met all of his developmental milestones early, and that he regressed between ages one and two and was diagnosed with autism at age 3. He looked at me like I had two heads. Then, he asked me if any of the doctors we saw suggested that he had Childhood Disintegrative Disorder. I answered "No." He condescendingly asked "Do you know what that is?" I replied "Yes, it's where a child regresses and continues to regress. Not like my son, who regressed and then progressed again with certain therapies and interventions." He wrote in his notebook.
I could tell he did not like what I was saying. He had his idea of what autism was, a genetic psychological condition, not poisoning healthy children into "autism." I did not censor myself at all with his questions. I told him what I thought happened to my son, that we don't have a "regular" doctor anymore, that my child was basically poisoned, had numerous infections, and was brain damaged after birth. Again, scribbling in the notebook and looking at me like I had two heads ensued. He asked me who our physician was. I didn't answer him and after pressing me, I told him it was none of his business who I chose to treat my family. More scribbles. He said, "You don't trust the medical or mental health professionals, do you?" I answered, "No, they are part of what damaged my son, why would I?" More scribbles. He had to shuffle off to sharpen his pencil after that one. FAIL!
Then the real fun began. Dr. Relic asked my son to come and sit on the opposite side of his desk and without addressing him by name, blurts out "Count to ten." My son was tuning us out during our discussion and really didn't know Dr. Relic was talking to him. After he didn't answer, and Dr. Relic wrote something on his paperwork, I said, "You need to say his name first, so he knows you're talking to him directly." He replied, "I have to do it a certain way." "Say the alphabet." Again, my son didn't know he was speaking to him and didn't respond. I said "He knows both of those things, you're not asking it the right way." He was getting annoyed with me, so I finally realized that the goal was to get him to say my son has autism and get on with the process. I crossed my arms and stared out the window and let him do it "his way." My son was super stimmy and whiny, which was probably a good thing, but it was a glaring example to me of what is so messed up with the current system, and I truly feel that is a huge injustice to our sick kids. FAIL! 
I tried to find a happy place and focus on the goal, not trying to prove something to someone who clearly had no interest in my first-hand knowledge of what happened to my child. He was the expert, after all, and was so proud to show me a framed study that he took part in with autistic adults learning new skills after doing a certain something or another. I feigned interest while in my head thought, "Our kids are so screwed." FAIL!
I cried when I got home thinking this is the system that is set up to determine eligibility for disability benefits for "autism." On one hand, with that questionnaire and the subsequent "testing" done, many people who shouldn't qualify will, taking money away from those who need it most, and children that were damaged by vaccines and other environmental insults will be lumped into a category that they don't belong in and get the same benefits, which amounts to pretty much nothing. After receiving a letter in the mail saying that my son qualified medically for SSI (based on Dr. Relic's assessment), we had to see if he qualified financially for it, based on our income.
My mom, who is retired, gets Social Security benefits. She does not have to prove her earnings on a monthly basis to determine how much she receives each month. She can't earn a certain amount more in a year, or she's penalized, but she gets the same amount each month. For a child with a disability, you have to show them your income each month to determine if you are still eligible. But, they base it on last year's earnings, and self-employed is different than employed, yadda, yadda, yadda. There are so many rules and exceptions, it makes no sense.
In my opinion, if a child has regressive autism, a disease caused in part by the government's mandated vaccine schedule, the child should receive some sort of compensation for the rest of their lives, regardless of the parent's income! The way it stands now, you have to be basically living in poverty to qualify, and they make you jump through hoop after hoop, after hoop, hoping you'll just give up, and get a measly maximum of $700-some dollars a month (depending on your income that month). According to the SSI representative I spoke with, ours will be around $500 a month, if we qualify. This doesn't even pay for organic food for one person for a month! FAIL!
Evidently, they haven't seen the latest statistics that it costs $60,000 a year on average to treat children with (medical) autism. Between many hours of ABA therapy, speech therapy, special diets, lab testing, doctors visits, HBOT, AIT, etc., etc., etc...This is why we are in the predicament we are in to begin with!! Paying for everything out of pocket because autism was excluded from insurance benefits when we had it. To top it all off, while discussing our financial status with the afore mentioned SSI representative, she suggested that I just kick back and not work much so that we still qualify for SSI, because we are on the cusp of qualifying, but that if I made too much, it could disqualify us. So, being a college graduate, I'm supposed to just kick back and not earn a good income with potential health care benefits (which is another FAIL! story) for my family in order to receive $500 a month? FAIL!
It's no wonder so many people choose to be lazy and collect various Government handouts. I know people who are on disability (probably through work) but come to the gym and take my Pilates classes. So, you're supposedly disabled and can't work, but you can work out on a Pilates reformer, play golf, and run, but my son who was disabled by faulty medical practices, vaccines, GMO foods, among other things, can only qualify for a measly amount of money per month to help pay for his therapy, school, what have you? EPIC FAIL! 
Even though I am a very spiritual person, I'm still a human being and most importantly, a mother trying to heal her son. I still get angry at the injustice facing our kids. The way the system is set up to care for our children with "autism" is an absolute FAIL! When the other relics in the system still think that autism is a psychological condition, and that our government only gives financial assistance to those with low income (even if their child's condition is what got them there), we have a huge problem on our hands. Many of our kids cannot advocate for themselves. We have to do it for them. What happens when they are adults and have not recovered to a degree to take care of themselves? What happens when their parents are no longer here or able to care for them? Will they both be fighting for space in nursing homes? I'm predicting another...FAIL!
We still have not received an answer or any payments since first applying for SSI last October (six months ago), but it certainly has been eye-opening. I am interviewing for a full-time position with benefits, and do not want to be part of the Free Shit Army. My husband's income is getting better and better each month, so hopefully we won't qualify. But, if we do, we would be required to show where all of our money comes from each month, and our payout would change monthly according to that, and if we have over $2,000, we don't qualify...the list goes on and on. We were among the casualties of the housing market fail in NV and are dealing with that nightmare as well. So, like my mom, people who retire and get SSI, get the same amount each month, and don't have to show their monthly income to receive benefits, but a family with a child with autism does. FAIL!    
The SSI representative that I spoke with on the phone during our interview must have noticed my unhappiness with their requirements, and added that if I wanted to change their policies, I had to contact our state representatives who make the laws. Like I need another thing on my plate. I guess someone is going to have to do it at some point. But learning the truth would mean accountability on some level. Relics in the medical community and the government don't want to believe that children with regressive autism have a different condition than people born with classic autism. It would mean that they are wrong, and potentially liable. Their enormous egos would not allow that.  
Now that I've vented, I need to go do some yoga. Namaste.  
Enjoy the 33 minutes of Epic Fail Compilation, feel free to skip the pharma ad.


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