<p>A dear friend was the director for this advocacy group, silpat.
[Advocacy</a> For Patients With Chronic Illness](<a href=“http://advocacyforpatients.org/]Advocacy”>http://advocacyforpatients.org/)
She had Crohns and wrote a handbook to inform those with chronic diseases of their rights, perhaps they could help?</p>
<p>( I hadn’t seen those ads. How awful, I agree, they shot themselves in the foot).</p>
<p>What an excellent resource. I’ll mention it on my website and maybe buy some of her materials. Advocacy can be tiring.</p>
<p>Sadly HImom, you couldnt be more correct.
Jennifer died in September of last year, but we are keeping her organization going.
[She</a> was the same age as me. 55](<a href=“Jennifer Jaff, Legal Advocate for the Ill, Dies at 55 - The New York Times”>Jennifer Jaff, Legal Advocate for the Ill, Dies at 55 - The New York Times)</p>
<p>Wow. We’re “of an age.” I was inspired to start an advocacy group in 2007 but didn’t represent anyone in quite the way your org does. Mostly we try to have patients be more active in their own care and treatment. </p>
<p>I think in general chronic disease takes its toll and we who have such conditions may live shorter lives. I know when I get an infection or any kind of illness, I’m often ill for weeks, even while on antibiotics. I’m currently in my 2d week of antibiotics and only now starting to feel human again. We had to cancel a planned trip.</p>
<p>Chilldren in CA need to be 18 - really?? - [Child</a> Disability Starter Kit Fact Sheet](<a href=“http://www.ssa.gov/disability/disability_starter_kits_child_factsheet.htm]Child”>Child Disability Starter Kit Fact Sheet)</p>
<p>In post #32, I didn’t say those kids are disabled - the point is they aren’t.</p>
<p>“My wife was telling me that in her school, a lot of parents of elementary school kids come in to have teachers sign documents stipulating that their kids have disabilities so they can collect ss.”</p>
<p>“DocT- maybe different by state. In NJ, children with special needs do not qualify for SSI until age 18, unless family income is very low.”</p>
<p>Same in California.</p>
<p>It also isn’t as simple as getting a teacher’s signature to show that a kid is disabled."</p>
<p>Nice link…</p>
<p>“Children from birth up to age 18 may get Supplemental Security Income (SSI) benefits. They must be disabled and they must have little or no income and resources. Here are answers to some questions people ask about applying for SSI for children.”</p>
<p>"Social Security has a strict definition of disability for children.</p>
<p>The child must have a physical or mental condition(s) that very seriously limits his or her activities; and
The condition(s) must have lasted, or be expected to last, at least 1*year or result in death.
A state agency makes the disability decision. They review the information you give us. They will also ask for information from medical and school sources and other people who know about the child.</p>
<p>If the state agency needs more information, they will arrange an examination or test for the child, which we will pay for."</p>
<p>I think everyone agrees that there are those who truly need SSI. It is the abuses to the system that need to be stopped and the cavalier attitude of some that must be challenged. This cannot be good for our future.</p>
<p>Silpat, I feel for your relative with Crohns. I have a friend with it also.
I have long standing (controlled) ulcerative colitis. Not severe, but not fun either.</p>
<p>So sorry that people who really NEED SSI have to fight for it when that diverts energy from dealing with their illness.</p>
<p>This has always been the case, but it used to be that getting SSI was very difficult. It appears that there have been more approvals. It is a problem in areas where there simply is not work. You get someone who gets disabled, is recovered enough to do work but can’t find it. He’s still hurting enough to justify the disabilty and it’s his lifeline in terms of income. </p>
<p>I’ve seen it with the kids too. There are families who live off of the kids’ SSI. Yes, the kids do qualify. But many of them can improve enough to get out of that category, but it is not in the family’s interest for that to happen. FOr a kid just under the line, having him just over it is not a real improvement in terms of challenges and the loss of special resources alone can be problematic, not to mention the loss of a check that is supporting a family.</p>
<p>My former neighbor fought the loss of her kids’ disability dx tooth and nail as it gave them some wonderful resources. They moved to a school district that would continue to give them the specials she felt that they still needed despite the fact that they are now considered “normal” by our district. In their case, SSI was not an issue, but the designation has a lot of things that can help, and we all want as much help as we can get. To argue when a line is crossed, is futile, as so many who go from disabled to able, still need, It isn’t a line but a definite gray area.</p>
<p>The fact of the matter is that there are those who are truly disabled who work. It’s not that those who are trying to transition out of disability don’t want to work most of the time, but they can’t find the work that will make up for the check. The same with a family with a child who transitions out of disability. The new ground does not make up for what the disability dx covered. There is a true need there and people will fight to keep what they can as they see and feel that need.</p>
<p>So how many people are on Ssi? </p>
<p>How many people have iqs under 70 in the US?</p>
<p>*</p>
<p>Also, FWIW, you can work up to a certain amount and still get SSI (SSDI?).*</p>
<p>Yes! I recently met a very able-bodied young man (20) who gets about $700 a month for “ADD/ADHD”. and he can work up to about 1000 a month, which he doesn’t bother to do because he can live at home for free, and “play” with the $700 a month!!! </p>
<p>The whole thing is a scam. </p>
<p>Dstark…I doubt that it’s hard to get these bennies in Calif.</p>
<p>Interesting. You met somebody who is a scammer</p>
<p>And so the whole thing is a scam…</p>
<p>Hard to argue with that kind of logic…</p>
<p>The Senate conducted an investigation, which results were released in February, that approximately 25% of the claims are fraudulent. Unfortunately, my computer crashes everytime I try to open it. However, you can see news reports related to it and the report is on the audits and investigations website. You can also see case after case of people prosecuted for the fraud, so clearly, it is taken very seriously which is all anyone can ask.</p>
<p>[Able-Bodied</a> People Defrauding Social Security Disability Program | The Foundry: Conservative Policy News Blog from The Heritage Foundation](<a href=“http://blog.heritage.org/2012/10/12/able-bodied-people-defrauding-social-security-disability-program/]Able-Bodied”>Able-Bodied People Defrauding Social Security Disability Program)</p>
<p>I heard the NPR report this weekend. It was fascinating. Many of the people she interviewed were disabled because of chronic pain - back pain is the big one. She found that there were literally no jobs available in that county that would accommodate back pain. The people she interviewed couldn’t imagine a job that didn’t involve standing up all day. The dream job was any job at which you could sit. </p>
<p>
</p>
<p>[PolitiFact</a> | Tom Coburn says one of every 19 Americans gets SSDI or SSI payments](<a href=“http://www.politifact.com/truth-o-meter/statements/2010/dec/14/tom-coburn/tom-coburn-says-one-every-19-americans-gets-ssdi-o/]PolitiFact”>http://www.politifact.com/truth-o-meter/statements/2010/dec/14/tom-coburn/tom-coburn-says-one-every-19-americans-gets-ssdi-o/)</p>
<p>cartera, anecdotally, I truly believe that the lack of jobs is part of the problem and doctors are fudging a little to keep people from being on the street.</p>
<p>I have a former co-worker who retired before Christmas. She was 82 and paralyzed on one side from face to foot after a stroke. She worked as a manager in a law firm for all those years because there were accommodations made for her. Employers do not have to make accommodations for anything anymore.</p>
<p>This was an interesting link included in the above article:</p>
<p><a href=“http://www.coburn.senate.gov/public/index.cfm?a=Files.Serve&File_id=6f2d2252-50e8-4257-8c6f-0c342896d904[/url]”>http://www.coburn.senate.gov/public/index.cfm?a=Files.Serve&File_id=6f2d2252-50e8-4257-8c6f-0c342896d904</a></p>
<p>Yes, certainly in the county in Alabama that was the focus of the NPR report, the lack of jobs was a key factor. People who are in physical labor jobs are clearly more likely to get hurt. People whose job involves lifting other people are probably going to hurt their backs at some point. Should the doctor who decides that most of these people are disabled take into account the jobs available and education level? Ideally not, but if you have don’t have a high school education in a logging town or a mining town or almost any very rural town in poor areas, what’s to be done?</p>
<p>I try to read all the links but 136 pages is a bit much.</p>