Today I had an interesting talk with my lawyer. As a few readers of this blog and the previous blog I had, Jonathan's journal on my
other website may remember, a couple of years ago when I retired from paid work, I filed a claim for social security disability insurance. I had somewhat of a shock (no pun intended for those involved in autism long enough to remember Dr. Lovaas' old ways) to find that the main headquarters of the Lovaas Institute for Early Intervention was located in the same building on the same floor just down the hall from my local social security office! I wrote an essay about this irony. This was in about June of 2007. I had tests by a psychologist and then was turned down in October. I got a lawyer and filed an appeal, a year and a half later i have my hearing before an administrative law judge coming up. I figured there was a good chance i would not be awarded the money and that I could just walk away from this albatross that had been hanging over my head for two years. My lawyer wanted to see me in his office on Friday, but i could not see him until today (Monday). He informed me that he wanted me to take some vocational testing and have my former employer write some sort of letter.
He told me that two years is nothing and that he was still working on a case going back to 1986. Also still working on someone's case for the past 12 years!. He talked me into appealing though I am now aghast that the process really goes this long. He might die or I might die before my appeals are exhausted.
After a claimant is turned down by SSA and then loses at the level of a hearing before an administrative law judge, then there is a court of appeal in virginia where written statements are submitted. After this there is a federal district court to which the case can be appealed. Then there is what is called the 9th circuit court which is the highest federal court of appeal in the state of california that is just below the united states supreme court. I had wondered if any of these cases went before the u.s. supreme court. I'm no lawyer but from what I understood the supreme court is very selective about which cases they will hear. My attorney said that yes, the supreme court did hear these cases sometimes. He himself had never argued a case before the supreme court but that a friend of his who also practiced the same kind of law had. For someone who was an alcoholic, who could no longer work because of cirrhosis of the liver.
I might do some more research on social security disability law and maybe edit this blog post with some relevant links but that is not easy for me due to my being handicapped. I guess this case did not take up a really significant part of my life except now it is because of the imminence of my hearing before the ad law judge.
Guess I will be involved with this for longer than i thought. I guess I will have to try to practice some healthy eating habits and exercise more so that I can live long enough to exhaust all of my appeals.
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18 comments:
Ari is friends with Kareem Dale, the president's disability advisor. I'm sure if you were to ask Ari, he would mention it to Mr. Dale and some action would be taken to approve your appeal. I can't speak for Ari, but he doesn't seem to be someone that would let your views influence whether he would help out in this situation.
K
Thanks for the tip, K, but I think I will just go with what my lawyer tells me to do.
Jonathan
I've read your essay on Dr. Lovaas' clinic and I am (partially) agreeing on this. Indeed, the fate of recovered autistic kids is heavily under-researched.
Yet ... nobody said those kids ever regressed.
Behavioral intervention does work. At least in the short and medium term. Any parent who tried it properly can testify for that, let alone the studies.
The books claiming full and permanent recovery from autism after 2-3 years of behavioral intervension are, obviously, making pictures in rosy colors that try to give hope to millions of desperate parents. The reality, as always, is somewhat more subtle.
Recovery from autism is not something that happens suddenly or - I dare to say - completely. The austistic brain is not transformed into a neurotypical one. And the autistic individual remains autistic, although with higher capabilities to cope with the world outside and inside.
Quite recently I've went to an workshop on HFA/Asperger's because my son, who is a PDD-NOS now, most likely will join that group at some point. And I was able to see the many challenges that HFAs and the Asperger's have to face due to their disability.
The work does not stop with 2-3 years of ABA. It continues much longer - up to age 25 (when some say that autistic brain stabilizes) and, probably, even beyond.
Marius. There are no published adult outcomes of ABA. The methods used in the studies relied on aversives, spankings, electric shocks. I know from my own personal experiences that subjective parental ratings of treatments their children receive are unreliable. Someday your son will be an adult and if he is unable to make a living, what good is ABA therapy?
They claim that ABA is saving the kids from life on the dole, yet provide no adult outcomes? This must mean the therapy is not worth much since many persons who underwent the therapy are now in adulthood, so my points still stand.
I agree with you that parental thinking is inherently unreliable.
And I agree with you that adult outcomes are not scientifically evaluated, despite the fact that now there is material for study (the former children who are now adults) - I am quite curious why their evolution is not checked at all.
But ... I will give you the example of Mr. Damian, the guy who brought ABA in our land. His child was IQ 35 at four years of age. Now he is in the 4th grade in normal school, good grades, has learned English, has friends, etc. He's not "indistinguishable from his peers", he's got attentional, behavioral and minor speech problems, but they are at bay. The difference is huge, it's not hard to imagine how he would have evolved without the intervention and one cannot overlook that.
You make a very good point about adulthood. If my son will not be able to make a living, I hope that he will be at least functional enough to speak, to write, to answer questions of a social worker - in other words, to be able to ask for help. This may not seem much, but considering that autism can be much more severe than that, I'd say it's worthwhile doing the intervention.
I don't believe in miracles, I don't believe in "indistinguishable from peers" and all the other rhetoric of ABA triumph. Yet, I believe that ABA means (at least) higher chances not to be institutionalized and higher chances to be able to function with some help in this world - with or without a job and with or without complete independence.
In the absence of a complete and reliable cure, I think it is the best we can get at this moment.
Now, more in line with the main content of your post, I wish you good luck with obtaining the help you need. Hopefully the decisions of the bureaucracy will not go against your requests.
Hi Jonathan
I do not know your situation well enough to offer any sort of specific advice, but when I read you declining a possible support from Ari this sorts of rings a bell in my head. I am wondering if there is not a pattern of responses here.
I have been helping adults with autism more and more often. No later than today I received a very nice e-mail thanking me for writing a support letter to the University. The person AS needed just a little bit more flexibility from the University part to enable him to give his work after the normal deadline. The reason being that he writes very well, but needs to be absolutely happy with his work before handing it in. That means being perfect. But somehow being perfect with a deadline is so much stress that this person feels almost paralyzed and even more stressed and it takes even longer still to finish that perfect work. The work is of excellent quality, actually I have in mind to help him to get it publish and to make a video from one of his stories, with him in it. It is easy for me to write a letter to ask for what is needed, it just needs a little clarification on the conditions needed for that person to work best. And I can request this, actually, I can command it. Well, the funny thing is that this AS person finished his wonderful thank you letter saying, I might use it, if I need to. I thought what? I wrote it because you need it, why not use it now? But I cannot do more than this. Just observe. I am reporting this story, because the same pattern occurred all the time, it’s like if you guys at times, are your own worst enemy in a way. But maybe I haven't cracked it, maybe I don’t know how to help.
Now, when I have a problem with a case, of medical/scientific nature, or when I write a grant, or what ever, I tell you one thing, I run this pass many many people and I am taking ALL the advice there is to take, I will explore everything anyone has to offer. I am dealing for example just now with a case of diagnosed childhood disintegrative disorder, age 8, characterized with sudden (within 2 weeks) loss on communication, phobia, delusions (hearing voices, seeing things) and now tremors, lethargy. Well, thhe case is serious and complex and I am not telling you what it fallows in case you start arguing this, but I have 4 medical doctors in 4 different countries in conference call with me discussing that case. And we work with the NHS and private medical system too.
I will take more advice still if need be.
A long story as always to suggest that perhaps you should consider what some autism advocate groups can offer you. Go for it full blast, with everything, you will almost certainly stand more chance to succeed. Don’t get distracted in anger-style, sarcasm about the system, just focus on what you actually need, how you can use that system to get it in place, and seek advise, and seek help. Not just your lawyer, unless of course he is top expert on autism advocacy issues with long track record of successful cases, which is unlikely the case/. Good luck anyway.
SM69: My lawyer is in his late 60's has many decades of experience in social security disability litigation. This is what the issue is about, it has nothing to do with advocacy for autistic people. I am trying to get SSDI in which you usually have to jump through a variety of inevitable legal hoops to get.
Ari Neeman is a 21-year-old kid with no life experience who has never even had any sort of employment whatsoever. I think I will stick with what the true expert has to say on the issue.
Furthermore, if some person or organization is actively opposed to trying to cure autism or in doing genetic research which could lead to a cure and prevention of autism as is the case with Ari Neeman and ASAN they are part of the problem not part of the solution.
As part of the economic stimulus package, we joined the rest of the disability community in successfully advocating for an additional $500 million to help process disability claims in a quicker fashion and to help reduce the current backlog. I wish you the best of luck, Jonathan. Let me know if there's anything I can do.
Thanks for your wishes Ari, but there is nothing you can do. I stand by my assertion that you and ASAN are part of the problem not the solution. If there were cures and preventions for autism it would not be necessary for anyone to file a disability claim in the first place. If you were not aware of this before you read my piece, disability litigation often takes many years possibly more than a decade with the variety of appeals and hoops that one has to jump through. We will see whether or not the stimulus package will actually result in claims being resolved more quickly. As you may know, there are many appeals that can be gone through once a claim is denied, first an administrative law hearing, then district court hearing, then circuit court hearing then possibly even the supreme court where some cases are heard. Even if the time of due process is even cut in half it still means many years of waiting and suffering for those with disabilities. You and ASAN want to continue that suffering, I want to end it by finding a cure and a way to prevent autism from happening in the first place.
Sorry to get into the argument here, but surely even if Ari does not want a cure for autism, that does not make him responsible of it either? And surely if he is trying to put in place support then it’s because he appreciates there are difficulties and it’s not all rosy, don’t you think? I don’t want to make predictions, but my guess is that genetically caused autism is not going to be cured for a while yet. So, what are you going to do until this happens, if it ever happens? Just be angry refusing help because you would like to be someone else, and there is nothing else you could accept but to be that someone esle? I think changing how you view this would make a big difference already on how you feel and how you live this. I really do, but I presume you will not accept what I am saying, and no doubt, I’ll get a shower of anger back.
No shower of anger from me. That is the way your buddies in the neurodiversity movement respond with few exceptions.
If Ari is trying to prevent a cure from happening, yes he is responsible. Until major breakthroughs are made in understanding the etiology of autism and treatments I am certainly not against autistics receiving help that they do need, assuming it is something that is of true benefit.
Ari Neeman and other neurodiversites offer nothing in this regard. Being in the UK, you probably did not see the TV show on which Mr. Neeman responded with the empty platitude "Being anti-cure is not being anti-progress" when asked what can be done instead of finding a cure.
ASAN, only crusades against trivial things like the ransom notes campaign, or the nonmalicious use of a slur against developmentally disabled people in a movie. Neurodiversitites do nothing to help autistic people and they offer no solutions. They only spread, hatred, bigotry, lies and propaganda. If Ari or anyone else has any constructive suggestions as to what can be done to help autistic people until a cure and/or prevention are found I am still waiting to hear them. I have waited a long time and I am still waiting, though I won't hold my breath.
My situation is a bit different as I have never worked...
I began recieving SSI as a kid and still get it to this day. I live with my father so it is about $449 a month. I also get Medicaid.
I've NEVER had a problem getting SSI or anything related to disability. I got it on the first try, no problem. When a person is severely disabled it is easy to get.
I sometimes think that SOME people with HFA/AS want it so they can be lazy, so they can be lazy and write annoying and false blogs about Neurodiversity (I know that's extreme, but I swear, sometimes it seems to be true).
People with HFA/AS usually don't need disability. This is why Voc Rehab exists; Voc Rehab can help people with HFA/AS get a job that they can do. I've actually heard wonderful things about people who can function at a high level.
For those who are more disabled, Voc Rehab is worthless; Voc Rehab told me I was too severe and they couldn't help me.
Disability shouldn't be the first choice if a person is disabled; it should be the LAST. There are plenty of services out there to help people with HFA/AS get jobs they can do.
I WISH I could work. I HATE being on disability.
Hi Stephanie, I have applied for SSDI, not SSI. They are two different programs. To be eligible for SSDI you have to have worked for a substantial time.
I am glad you were able to qualify on the first try.
I don't know as much about SSI, but you may have been lucky. From what I have heard the case with SSDI, about two-thirds of the people who apply for it are turned down on the first attempt and then there is an uphill legal battle.
ASAN, only crusades against trivial things like the ransom notes campaign, or the nonmalicious use of a slur against developmentally disabled people in a movie. Neurodiversitites do nothing to help autistic people and they offer no solutions. They only spread, hatred, bigotry, lies and propaganda. If Ari or anyone else has any constructive suggestions as to what can be done to help autistic people until a cure and/or prevention are found I am still waiting to hear them. I have waited a long time and I am still waiting, though I won't hold my breath.Aside from the stimulus funds we worked to help secure in part to the very issue you're discussing, I'll speak to a few of the things we've done in the past month. They include getting AAC to be included in the Autism Treatment Acceleration Act's insurance mandate provision, meeting with the federal civil rights enforcement bodies and representatives of the federal government's hiring initiatives and achieving commitments to increase technical assistance in relation to ADA enforcement for Autistic adults and employment opportunities for Autistic adults within the federal government, raising the issue of health care disparities for Autistic adults and those with other disabilities to the Senate Finance and Health Education and Labor Committee staff as they consider comprehensive health care reform, advocated for long term services and supports to be included within comprehensive health care reform, testified in favor of increased special education funding and improving transition supports, arranging an invited presentation from both a self-advocate on our board who uses AAC and an expert on our recommendation on AAC practice to the Inter-Agency Autism Coordinating Committee and advocating for increased research funding for services, supports and education within the IACC process. There are, of course, other activities we've engaged in, both generally and within the past month, but these serve to highlight some of the most significant ones in the context of quality of life oriented advocacy.
Stephanie,
Amongst the neurodiversity advocates I'm familiar with, very few are on SSDI for largely the same reason that Jonathan is having trouble getting on SSDI - the extraordinary backlog in both the application and appeals process. I don't know what seems to be true about that to you, but as far as the people I know in the neurodiversity and autistic self-advocacy community, most are struggling to find or keep employment, often attempting to utilize the voc rehab or the ticket to work infrastructure. In addition, because up until recently narrow judicial decisions had robbed Autistic people of the protections of the ADA (by claiming that most people with disabilities who compensated via assistive technology, learned behavior or other mitigating measures shouldn't be considered as disabled), ADA civil rights protections and opportunities for reasonable accommodation had not been made available to the prospective Autistic workforce. Since the ADA Amendments Act passed (hopefully fixing the narrow definition of disability problem), we've reached out to the relevant federal agencies and they've expressed a willingness to work with us on developing technical assistance on how the ADA can be made relevant to Autistic adults.
Both the research and the anecdotal experiences of many Autistic adults from a variety of backgrounds show that right now voc rehab is doing a poor job in serving our community. As a result of this, NIDRR is funding a study on voc rehab models for Autistic adults and ASAN has been advocating for more IACC dollars to go towards the employment field because the outcomes are so poor across the spectrum with that particular agency. To be frank, the voc rehab system really needs an overhaul for all people with disabilities as well, in that there are very big structural problems with how they operate and how effective they are.
When did you get assessed by voc rehab? One of the regulatory factors that may be relevant to you depending on whether or not you were refused on the basis of lack of ability or lack of capacity is the Order of Selection federal rule that mandates that people with the most significant disabilities be served first in the event of a shortage of availability in voc rehab services leading to a waiting list. Obviously, I don't know about your particular case so I can't speak to that, but this is a useful link describing the order of selection concept and procedures: http://www.vesid.nysed.gov/current_provider_information/vocational_rehabilitation/policies_procedures/0250_order_of_selection/policy.htm
Another interesting issue in respect to getting people with disabilities employed is the issue of work incentives. NCD released a report on this last year: http://www.ncd.gov/newsroom/publications/2008/pdf/FinancialIncentives.pdf A major obstacle - and you may have already run into this or you may end up doing so at some later point - to getting off SSI or SSDI for people with disabilities is the fact that the additional income may render a person ineligible not just for SSI/SSDI, but for the associated Medicaid coverage that comes with it. While the employment income can and is supposed to replace the SSI/SSDI income, the loss of access to public health insurance is the real problem, as most people with disabilities getting off of SSI/SSDI for the first time don't get jobs that come with health care and can't afford to buy it on the private market. So people are caught in catch-22 type situations - they want to work, but if they do, they will be worse off than if they stay on disability benefits, due to the Medicaid eligibility problem. One of the better solutions that's been developed for this are the state Medicaid buy-in programs that have launched in states across the country in the past several years. Basically, they allow people with disabilities who have been on SSI/SSDI to buy into Medicaid as long as their income is below a certain amount (an amount much higher than what would render a person ineligible for SSI/SSDI and thus Medicaid without the buy-in program). Most states have them at this point, so you should be able to find out more information about this from voc rehab or just by googling your state's name and "Medicaid buy-in program".
I have published Ari Neeman's comments and I will respond. First I will respond to the only thing that Ari has said that I agree with and that is voc rehab programs are ineffective. I know about this from my own personal experience and I have written about this in a previous gadfly post though I don't have the link handy.
Ari Neeman has no business trying to suggest to the IACC items for which it was not intended. The IACC grew out of the combating autism act which Mr. Neeman and his friends literally demonstrated against with placards. The only purpose of the combating autism act and subsequent creation of the IACC was to find ways to cure and prevent autism using science, something Ari has consistently opposed. It was not designed to help create jobs or promote enforcement of the ADA or any other purpose.
Ari Neeman is a 21-year-old kid who has never been employed in his life at anything and knows nothing about employment in general or problems in the workplace in particular which I have nearly 28 years of first hand experience in-more years than Ari has been alive. He has nothing to suggest in terms of problems in the workplace.
The stimulus package is too new to see if it will have any effect in helping persons with disabilities.
As a former special education student I would think Ari Neeman of all people would understand how ineffective special education is and what a travesty the Individuals with Disabilities Education Act has been. Yet he lobies for money for special education.
The rest of the money that ASAN has lobbied for are asking for tax dollars to be spent on person's with disabilities. Ari rejects the idea that autism is any form of an intrinsic disability and is only a societal construct. He states that autistics at the same time should not be cured, should not be prevented from becoming autistic in the first place, yet he demands that tax payer dollars be spent on services for autistic people and he takes advantage of laws that he has publically opposed prior to their enactment and then takes advantage of the ineptitude of the federal government in not assuring that the combating autism act only does what was its intended purpose.
It is interesting that looking at ASAN's webpage that none of these other things are mentioned. Only trivial things like the ransom notes campaign, the protest of the movie tropic thunder, etc.
I think the main difference between SSI and SSDI is that people with SSDI have work experience.
I believe the same criteria are used to determine eligibility.
I didn't get lucky; I'm severely disabled. Every severely disabled person I've known has gotten it on the first try, no problem.
You have to be VERY SEVERELY disabled to get SSI as a child. I began recieving it as a child when I was living in institutions. I've had a review to determine if I was still disabled but they determined I definitely still was.
Hi again Roger, Ari is still quite young, 21 years old and in college and has not yet entered the workforce. This is not uncommon among upper middle class college students his age. I agree he should not be discussing issues about employment with his lack of experience.
I have no heard of cases where autism got better and then regressed and this has certainly not been the case with me.
Though I did work sporadically off and on, it was pure hell and I had multitude of problems and to make a long story short, I sort of ran out of steam and was just tired of struggling. This might not make my case for SSDI terribly strong but based on certain legal precedents my lawyer thinks i have a case.
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