Multiple Sclerosis Anti-Discrimination Social Security Act.

(c) 2003, Mike Barkley
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A [draft] Bill
For the relief of multiple sclerosis victims discriminated against
by the Social Security Administration

Be it therefore enacted by the Senate and House of Representatives of the United States of America in Congress assembled, that,


Congress makes the following findings:

(1) Multiple sclerosis is a wasting disease with a number of different forms, some that are relapsing and remitting, some that are progressive. It is often difficult to diagnose, with the result that for many of its victims it can be many years between onset of symptoms and a diagnosis. During this time many of its victims find themselves with diminished or eliminated ability to work, declining earnings, and the prospect of abject poverty. Worldwide there are about 2-1/2 million victims of multiple sclerosis, with hundreds of thousands of those being residents of the United States. Workers in the United States subject to FICA withholding or self-employment tax are entitled to Social Security Disability (SSDI) when they are disabled after working a designated minimum time, which minimum increases with the age of the claimant.

(2) Because of its unique nature as a long term wasting disease with periods of remission and relapses, multiple sclerosis has proven difficult for the Social Security Administration (SSA) to evaluate in its duty to make SSDI awards to multiple sclerosis victims. Awards to multiple sclerosis victims by SSA have been inconsistent. Multiple sclerosis victims have thus been discriminated against in their claims for SSDI, and many such claimants have lost their entitlement entirely by the time SSA would otherwise grant their claims. The positions of SSA have generated an atmosphere of fear and anxiety within the multiple sclerosis victim community.

(3) Recent research has shown a link between stress and an increase in severity of multiple sclerosis symptoms.

(4) Positions taken by SSA have caused terrible hardships and aggravated symptoms for many claimants who had otherwise earned the right to SSDI through their own hard work, industry, and perseverance, and has delivered upon such victims a great inequity.


(1) Congress therefore enacts this "Multiple Sclerosis Anti-Discrimination Social Security Act".


(1) In all instances where the person disabled presents a valid claim that "multiple sclerosis" is the cause of all or part of their disability, any limitation on time for filing for SSDI or appealing any SSA action regarding SSDI for that person shall be waived for the duration of the disease, including for any relapses following remissions. If any such claimant had sufficient earnings and employment to sustain an award of SSDI at any time following the first appearance of multiple sclerosis symptoms, that person shall thereafter be deemed to have met such earnings and employment tests for any valid claim of disability based in whole or in part on multiple sclerosis. The amount of any ensuing disability award shall be at the highest amount that it would have been at any point following the first appearance of multiple sclerosis symptoms regardless of whether or not actual earnings by the victim tapered off or disappeared altogether before the acceptance by SSA of the victim's disability.

(2) Provisions of this act apply retroactively so long as the claimant is alive.
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[re-write to include all long-term wasting diseases,
in order to broaden the base of potential advocates and beneficiaries ?]
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In case it is not clear to you from the text above,

Why is MS any different from any other long-term wasting disease in the eyes of SSDI administrators?

It's because of the Relapsing-Remitting form the disease usually takes during the earlier phases. A victim can be rendered unable to obtain or keep employment, or suffer substantial reduction in employment prospects and income, and increasing gaps in employment, years before SSA will accept the disability, and in most such cases victims suffer substantial impairment of the wage base on which SSDI is calculated. In some cases, there can be complete severance of SSDI eligibility because of the eventual lack of sufficient "quarters" of wages, five years worth, over the 10 years before eligibility is accepted by SSA.
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A Discussion on the MS-Quads mailing list:

There are 9 messages in this issue.

Topics in this digest:

4. Multiple Sclerosis Anti-Discrimination Social Security Act - long
From: "Mike Barkley"
Message: 4
Date: Sun, 7 Sep 2003 06:45:22 -0700
From: "Mike Barkley"
Subject: Multiple Sclerosis Anti-Discrimination Social Security Act - long

Back in May I received two inquiries about the proposed Multiple Sclerosis Anti-Discrimination Social Security Act I have on my website, . YYYYY YYYYY was also kind enough to send me a copy of his argument against such a proposal. I've kept these three emails in my drafts folder for months, first because one of the writers professed legislative skills and connections, asked what was needed, and asked what he could do to move it forward - all very good questions to which I have guesses, but not cut-and-dried answers, and second, because YYYYY YYYYY's argument rather threw me. His argument,

> Date: Tue May 6, 2003 6:15 am
> Subject: Re: [MS-Quads] Multiple Sclerosis Anti-Discrimination Social Security Act.
> I don't know where this text came from, BBBBB BBBBB, but we should think long and
> hard before supporting it.

( I wrote the draft one day out of frustration at the fraud the SSA perpetrated upon my wife. )

> If this bill were enacted the way it is currently written, people would be
> clamoring to get an MS diagnosis regardless of what their problem is and the
> SSA would go even broker and further into the red than it already is. There
> would be NO incentive to work hard and to do one's best because benefits
> would be fixed forever at their maximum level. Today's rules encourage a
> person to work hard and to do the best that they can for as long as they can
> and reward people for doing so. If this were enacted, it would reward
> people for giving up, for slacking off, and for taking undue advantage of
> the system.
> If you think about the bill and the proposal that if you were *ever* validly
> diagnosed with MS your SSDI benefits will forever more be set at the maximum
> benefit for your earning level, you can see that there is LOTS of room there
> for fraud. I believe that there is enough fraud taking place with regard to
> SSDI today, the last thing that should be done is open the door even wider
> for it. equally valid as a reason to abolish all of Social Security, and yes,

As I noted on my web site, though, I'd planned to rewrite it to include all long-term wasting diseases, to the extent I could identify those which had been victimized by the Social Security disability practices, especially under the assumption that the myriad of "Multiple Sclerosis Society" type organizations for all these diseases have an affirmative duty to unite to lead a drive to halt the victimization of their clients.

I had not noticed it in May but YYYYY YYYYY had also politely informed me of where this debate had occurred, the MS-Quad yahoo list. I've signed up, and CCCCC CCCCC approved my membership. I was impressed by her admonishments "I will not tolerate personal attacks, flaming or spam" but then when I dug out the debate from May I was appalled. The most outrageous comment was:

> Date: Tue May 6, 2003 2:03 pm
> Subject: Re: Multiple Sclerosis Anti-Discrimination Social Security Act.
> This is a hoax. I spent five years working for the House Education
> and Labor Committee and ten more as a lobbyist for various education
> and women's organizations in Washington. I've even written two public
> laws that are still on the books. It might be Mike Barkley's great
> fantasy to build support for this preposterously naive idea, but it
> isn't a legitimate legislative proposal to Congress. As written here,
> it wouldn't even be dropped into the hopper because it has a thousand
> technical and jurisdictional mistakes.

A hoax? Wow. preposterously naive? isn't a legitimate legislative proposal? a thousand technical and jurisdictional mistakes?

Are you speaking as a representative of the Congressional power structure?

Well, yes, I am naive: I believe that my government should treat all its citizens fairly, should not deliberately deceive them for monetary gain, should not single out those with disabilities as targets for such monetary gain, and that the legislative branch has an affirmative duty to make amends when it finds the government guilty of such actions..

This is no hoax. My wife's story is below, and most anyone with any sense of fair play can understand how she was deliberately cheated by her government.

"XXXXX XXXXX", if you have the talents you assert, how about drafting a proper bill that will change the Social Security Disability structure to eliminate the current skewing of awards in favor of rapid-onset disability and against long-term wasting diseases? If anyone knows "XXXXX XXXXX's" true identity, how about passing this along to her?

And yes, as "XXXXX XXXXX" predicted, any complaints I've made to anyone in the Social Security Administration or requests to the State and Federal legislatures to reverse the SSA's fraud upon Jeanne or to all MS victims, or to all victims of long-term wasting diseases have all been ignored. "XXXXX XXXXX" enjoys being right about our government, but I would have thought the opposite attitude would be more appropriate on this mailing list..

AAAAA responded to XXXXX XXXXX's posting:

> From: AAAAA AAAAA@c...
> Date: Tue May 6, 2003 2:50 pm
> Subject: Re: [MS-Quads] Re: Multiple Sclerosis Anti-Discrimination Social Security Act.
> Thanks for the info. People who do these hoaxes should not be allowed to
> use a computer, they waste people's time & energy.


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Jeanne, MS, and the SSA:

Something you already know: Being disabled is expensive. Jeanne and I have done OK over the years with our investments, as much a result of her hard work and perseverance as mine - we've been partners in every way. Because of this, and because we're fortunate enough to have Kaiser, we get along without any form of disability compensation whatsoever. If the SSA is allowed to continue cheating MS victims, it won't really affect us.

Jeanne is a wonderful lady, beloved by many. I have her permission to tell her story as often as might be useful to cure the infrastructure ills that injure her or move toward a [MS] cure. We've been married 33 years. She has more guts, grit, and determination than anyone I've ever met. I thought she'd be bedridden 4 years ago, but she keeps on pluggin'. On the EDSS scale Jeanne has moved just beyond an 8.0. She's 57. Her first symptoms we're sure of were as a freshman in High School. At that time she began walking with a limp, with non specific pain in her left leg, and her extraordinary math skills tested in the 8th grade (along with an IQ of 143) devolved into what she calls "Lithuanian". Despite tests and consultations, no one could come up with a reason for her symptoms. She spent much of her high school in home-schooling and on crutches, and one day the pain just went away. From time to time in the years since, bizarre symptoms would appear, pains here and there, logic problems, falling, vision, fatigue, you know the drill. These would come and go. Kaiser was her HMO since infancy and still is, and has treated her well, except that they treated symptoms. She is asthmatic (which is also an immune system disease), and was on prednisone for that for the decade or so from, oh, 1970 - 1984, when newer, topical treatments emerged. I had always thought that side-effects of prednisone were the source of much of the physical mischief she suffered, but obviously I was wrong in retrospect. I now believe the prednisone held much of her MS at bay.

She had been on SSDI from the middle 1970s until 1986, when the SSA hired the "State of California--Health and Welfare Agency--Department of Social Services--Disability Evaluation Division" to sift the SSDI rolls and make a case to boot off as many people as possible. In the back and forth over the year of the review I presented what I now know to be a classic case of multi-symptom multiple sclerosis - the State KNEW Jeanne had MS, but did not tell her. The SSA's front agency, the State of California, determined that the topical asthma treatments that had become available meant that Jeanne was no longer disabled and booted her from the rolls. She was delighted at not being disabled, but MS symptoms accelerated as she moved from R-R to Secondary Progressive, including depression, aberrant driving with accidents, falling, diminishing logic abilities, incontinence, vision and hearing problems, swallowing problems, and so on, - symptoms many of you know well. Under the pressure of caring for her increasing needs I retired from the Phone Company 12/30/97 at the age of 52, in lieu of being fired. She had been using a cane over the previous year, been seeking out scooters at the grocery store, and so on. Within a month she wound up in a wheelchair. I'd felt possibly one of her auto accidents had left brain damage and we went to see a neuro at Kaiser a few months later following up on that question. Finally, after 38 years, they did an MRI and diagnosed MS and gave her the diagnosis June 4, 1998.

She is frightened at her prospects. I am exhausted and depressed.

If I have it correct, to be paid SSDI, which is your entitlement from your withholding the same as retirement is, you must have 5 years of quarters within the past 10 years. When SSA booted her in 1986, they severed her connection to all those years she'd worked and she could no longer claim based on them. And, of course, during those years she'd worked she'd lose job after job as logic problems manifested ("Why did you do that?!?" "I don't know! It seemed logical to me at the time." And of course, many mornings she just didn't have the energy to get out of bed.). As with so many of you, the quarters that qualify you for SSDI are not your highest paying quarters once the determination is actually made, your earnings dip towards the later years as MS damages your ability to make a living, and the longer you fight it, the lower is your SSDI base - you lose jobs, you can't get new jobs, absences kill your prospects. You may argue that we should have done a better job of appealing the SSDI ruling, but based on what? Not even her HMO, which had been spending a fortune on symptomatic care for her, not even they knew what was wrong - how could we appeal based on that? But SSA knew, in writing. And they cheated her out of the same entitlement every FICA contributor enjoys. If she had had a disease with a quick onset, there would have been no question, but these slower-onset diseases, the ones tougher to diagnose, meant SSA could stall her and stall her and eventually cheat her as they did so many others in the 1980s and still do. When I hear about Social Security Fraud, I ask, "what about fraud committed by the SSA?" It's a world of deaf ears.

Efforts to persuade Kaiser to help intercede with legislators, or legislators to pass a private bill in her behalf have been ignored. Dianne Feinstein and Barbara Boxer could care less - Jeanne's reward for being a life-long Democrat. So maybe it's the underlying problem that needs fixing:

The Social Security Administration discriminates against persons who become disabled by long-term wasting diseases [and especially against those with Multiple Sclerosis].

It's that simple.

This email group should be dedicated to redressing that wrong. Jeanne and I don't need the money, but I suspect many of you do.

All the best,

--Mike Barkley, 161 N. Sheridan Ave. #1, Manteca, CA 95336 (H) 209/823-4817 -
No more excuses - Cure Multiple Sclerosis Now!


There are 25 messages in this issue.

Topics in this digest:

10. Re: Multiple Sclerosis Anti-Discrimination Social Security Act - long
From: "Mike Barkley"
Message: 10
Date: Tue, 9 Sep 2003 01:53:11 -0700
From: "Mike Barkley"
Subject: Re: Multiple Sclerosis Anti-Discrimination Social Security Act - long

Thank you to those of you who have written me directly with your kind words of support. They help. CCCCC CCCCC, I'm working carefully to keep this within your guidelines.

This posting is to reply to three others:

First, ZZZZZ ZZZZZ wrote "From what I heard there is no such bill, that this is a hoax. I'll have to look into it and see if that is true or not." That is fine, but in the meantime, please do not label my advocacy for SSA/SSDI reform a hoax - it maligns my integrity and my good name.

Second, YYYYY YYYYY writes,

> 1 - I still believe that this proposal would encourage fraud and,
> for that reason alone, should never be enacted.

The SSA is very good at rooting out fraud, in fact too good: While my wife is now beyond an [EDSS] 8.0 and on her way to a 10, the SSA booted her off when she could still walk, severing her connection to her employment history and thus to her entitlement. Forever.

> 2 - The SSA has policies in place already that allow retroactive disability
> determination and payment.

For SSI certainly, but for SSDI? We do not qualify for welfare, but it's annoying for Jeanne to have been severed from the benefits she earned with her own hard work - I'd say to the tune of about $120,000 so far.

> 3 - Like anything else, getting benefits from the SSA requires knowing and
> understanding the rules and doing everything possible to satisfy the
> requirements of those rules.

Ah, yes. If you're going to be disabled, you'd better become a disability lawyer (and [MS] fatigue is no excuse, right?). In California (not that California is a shining example of much of anything these days) when you've paid your premium and then the insurance company routinely rejects any and all claims, it's called "bad faith", for which punitives are appropriate. Not so the SSA, which for the most part limits the availability of lawyers to those running claim mills, "take a number, don't call us, I'm sorry but if you can't prove your disability what do you want us to do?". If retirement were handled the same way, the whole [SSA] agency would get fired, and that defines the "discrimination".

> 4 - As I recall, liberal democrats were largely (if not totally) responsible
> for the creation of the SSA and for the mess that it is today. Perhaps you
> and/or your wife should rethink your politics with an eye toward personal
> responsibility instead of government handouts.

We are personally responsible for our living expenses and our disability expenses. The SSA is $120,000 richer for the fraud they perpetrated. I think I'm hearing YYYYY YYYYY advocating the abolition of all disability coverage. I doubt we will ever agree on these issues, Democrats speak to my soul, Republicans speak a language foreign to me. It does not mean either of us are right, it's just a fundamentally different way to look at the world.

But I suspect the comment "an eye toward personal responsibility instead of government handouts" is even now generating an appropriate fury in XXXXX XXXXX whose sister has been financially destroyed and reduced to suffering inhumane living conditions at astronomical costs by this kind of thinking. That's a for instance. Many of you have your own similar tales. How many of you return your disability checks with a note appended that you've decided to become personally responsible and starve instead of cashing them? Real close to zero, right?

Third, XXXXX XXXXX says:

> There is no such proposal before any legislature in any state or in
> the United States Congress; and there won't be for lots of reasons.
> Perhaps you are well-intentioned; I'll keep an open mind.

An open mind is all I ask.

> The legislative process is called that for a reason. It's a process.
> Ignorance of how it works is no excuse. You've come up with a
> legislative proposal that is unthinkable. Before you go defending the
> indefensible I suggest that you first seek the counsel of your own
> state legislative or congressional representatives, or contact the
> National MS Society's Washington representative. You also might check
> out the Library of Congress website to read "How Are Laws Are Made."
> The US Constitution might help too.

The National MS Society? with the things you've posted about them over the past decade? Still, yes, I have attempted to stimulate interest in the problem with the Society, but, as you know, in the areas you need it the most, such as your disability claim, the Society is real close to useless.

Although I have the skills to reconcile the far corners of the Internal Revenue Code & Regs, etc., and Constitutional Law is fascinating to me despite the hash made of it over the years (there are other types of discrimination, btw, that do not rise to the level of Constitutionally barred discrimination, if that's what you meant), it would be inappropriate at this stage to draft a proposed bill in that sort of language because the very people who need it would not be able to understand it. My legislative skills are at the local level, where I've been effective in campaigning and drafting and qualifying initiatives. At that level, the public needs to understand the legislation, or whatever, in order to apply the pressure needed to compel change.

That said, XXXXX XXXXX is a great potential treasure for the disabled community. If you run her name on Google you will find her right alongside The Hon. Patsy Mink for important legislation to improve the rights of women to equal educational opportunities, and her lobbying experience complements her legislative experience. So, yes, XXXXX XXXXX absolutely knows what she is talking about, and my hat is off to her with the greatest respect. If she were to draft a bill that would force SSA to treat retirees and short-term disability onset and long-term disability-onset SSDI applicants in a fair and equal manner and then carry that bill to the in-the-hopper stage, I'd buy her a beer. Or best seats to a Robbie Williams concert. Anywhere in the world. Or whatever.

But, there are things routinely left out of the usual "How a Bill Becomes a Law" pamphlets, and this is how I see it. It does not start with the introduction of a bill. It starts with an idea. The idea is "this is something that needs doing/needs fixing". How does the legislator get that idea? I see the following ways:

1) Duty
2) Conscience
3) Self-interest
4) Effective lobbying
5) Embarrassment

Once the legislator gets behind the idea, it is then handed off to someone like XXXXX XXXXX, an expert, who is told "see if you can fix this pile of [bleep]," and they go make it right for the hopper, at which time the formal process starts, introductions, markups, hearings, all that stuff. I am a long way from that. I am still talking to you folks.

All of you are witnesses to the SSDI (or SSI) process. If you do not believe that disability claimants are treated differently from retiree claimants or that long-term onset disabilities are treated differently from short-term onset disabilities [and especially that disability due to multiple sclerosis is treated differently by the SSA than all other forms of disability] , if you do not think this is in need of fixing, then the advocacy stops right here. Whether there is an actual bill in the hopper on Capitol Hill does not mean the legislation is not pending (except in the most technical of terms) or that it is a "hoax" - Dianne Feinstein, Barbara Boxer, and Rep. Richard Pombo (who is slightly to the right of Ann Coulter but does seem to be our "representative", sigh), and others have copies of this draft in their files. That they have not deemed it worthy of exploration or redressing or redrafting attests to my failure that XXXXX XXXXX has described. I have not yet convinced any legislator on the Hill that there is a problem, or one that deserves fixing. (After all, the SSA is a very powerful lobbying group.) I also have not persuaded a hundred thousand of you to show up at the Capitol in your wheelchairs demanding justice ( that would be an example of Effective Lobbying combined with Embarrassment ).

Why not? Isn't the disability community potentially one of the most powerful single-issue voting blocs in the country? Far more so than the dreaded NRA? Go to Google, type in SSDI and hit "groups", 35,200 hits, or "Social Security Disability" (with quotes), 28,000 - yes, this is a fairly paltry number compared to the 300 million of us in this country, but that's a Lot of people with SSA problems and remember, those are the ones with computers and awareness of Usenet. Consider the diseases: Multiple Sclerosis, Alzheimer's, Arthritis, Fibromyalgia, ALS, CFS, Crohn's Disease, AIDS, Parkinson's, Diabetes, Muscular Dystrophy, Cerebral Palsy, and more, each with multiple "organizations" [Thanks fer yer money, now leave us alone ya pest!] looking out for the victims, or, for that matter, AARP - what do we have? victims, families, friends? 5 million voters? What would it take for this bloc of voters to vote its unified interests? A known, abusive adversary? Like, maybe, the great evil empire of the SSA?

I stand in awe of the successes accomplished by the much maligned group "Act Up!" in keeping AIDS in the headlines until the funding flowed. Why aren't we doing that? Yes, I understand that from a wheelchair it's hard to vote. If you can't get to a polling place, you need to get a stamp, an envelope, find out where to ask for an absentee ballot, find a form, fill it out, get someone to mail it, get the ballot, figure it out (got my California Recall Sample Ballot yesterday - Whooeee! like voting a phone book, and the print's so small there's no way Jeanne can read it), seal it up, get someone to send it in on time, etc. and you're tired and it's gotten really hard to write. Still, shouldn't we all be voting in such a manner that halts the dumping of us on our society's scrap heap?

Would that there were a National Initiative, and no, there never will be one, but if ever there were, I would vote for
1) Sufficient funding to find an MS cure (including no limits on stem cell research) and for cures for all other long-term wasting diseases
2) Sufficient medical care for victims of long-term wasting diseases
3) Disability payments for such victims sufficient for them to survive.

And I would vote for all this before I would vote one dime towards any more bombs for any more Iraqs. The next best thing would be to vote in a bloc for legislators who respected our needs.

What does it take for MS victims to vote in a bloc for their best interests? Is fixing what SSA does to all of you a good place to start?

All the best to all of you,

--Mike Barkley, 161 N. Sheridan Ave. #1, Manteca, CA 95336 (H) 209/823-4817 -
No more excuses - Cure Multiple Sclerosis Now!

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--Mike Barkley, 161 N. Sheridan Ave. #1, Manteca, CA 95336 (H) 209/823-4817
No more excuses! - Cure Multiple Sclerosis now!