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This is where you stick random tidbits of information about yourself.

News for CMCD folks
Saturday, December 24, 2005  
Last Chance to Derail Budget Reconciliation

Contact your House member


The House of Representatives, upon its return for the start of the 109th Congress’s Second Session in late January, will vote once again on the Budget Reconciliation Conference Report. While this report contains a bit of good news, it has lots of very bad news for Medicaid recipients, along with bad policies for TANF and SSI recipients.

In this Reconciliation conference report, the Congress would cut human services entitlement spending by almost $40 billion over 5 years. Medicaid would be cut by $6.9 billion, with new Medicaid spending increased by $2.1 billion for new benefits to hurricane victims and expanded eligibility under the Family Opportunity Act and the Money Follows the Individuals Demonstrations. The bill also would save about $1 billion by delaying back payments to SSI beneficiaries and place onerous work requirements on TANF recipients. The upcoming House vote represents the likely last opportunity for disability advocates to defeat this very harmful bill.


The House of Representatives passed the conference report by a six vote margin at 6:00 a.m. on Monday morning, after a rare all-night Sunday session. Sixteen House members failed to vote. The Senate then voted 51 to 50 to pass the Budget Reconciliation bill on Wednesday, with Vice President Cheney casting the tie-breaking vote. Prior to the final vote, however, a “point of order” was allowed, stripping several non-germane provisions from the bill. This action now necessitates another House vote before the bill can be sent to the President for his signature.

Action Needed

This is our last chance to derail the Budget Reconciliation Report. Please contact your Member of the U.S. House of Representatives between now and their return to Washington, probably in late January. It may be possible to meet personally with these Members during the holiday break. In any case, you should contact them through their Washington office.

Here’s how you can help!

Call, email, and/or visit your Representative and tell them:

As your constituent, I urge you to oppose the Budget Reconciliation Conference Report when the full House votes on the amended report, which recently passed the Senate;

  • This report cuts Medicaid at a time when low income Americans and victims of the hurricanes desperately need this program the most. Cutting Medicaid is both reckless and unnecessary;
  • There are hundreds of thousands of our people with disabilities who are now on waiting lists for Medicaid long-term supports. Medicaid needs to be expanded, not cut, to address vital human needs;
  • It is unconscionable and fiscally irresponsible to pay for hurricane relief and deficit reduction on the backs of poor people with disabilities;
  • Eliminating tax cuts, not expanding them, is a more appropriate and responsible mechanism to achieve deficit reduction; and
  • Thank you

Dennis Rehberg

Washington, DC Office

516 Cannon House Office Building

Washington, DC, 20515

PH: 202-225-3211

FAX: 202-225-5687

Or send an email/letter to your House Member. Click here to send the message that Medicaid and SSI should not be cut to help balance the budget.


Travis Hoffman

Advocacy Specialist

Summit Independent Living Center

700 SW Higgins, Suite 101

Missoula, MT 59803

(406) 728-1630 - voice

(800) 398-9002 - toll free

(406) 829-3309 - fax

2:18 AM


By Bob Nichols
San Francisco Bay View
December 14, 2005

Preventive Psychiatry E-Newsletter charged Monday that the reason Veterans Affairs Secretary Anthony Principi stepped down earlier this month was the growing scandal surrounding the use of uranium munitions in the Iraq War.

Writing in Preventive Psychiatry E-Newsletter No. 169, Arthur N.
Bernklau, executive director of Veterans for Constitutional Law in New York, stated,³The real reason for Mr. Principi¹s departure was really never given, however a special report published by eminent scientist Leuren Moret naming depleted uranium as the definitive cause of the Gulf War Syndrome¹ has fed a growing scandal about the continued use of uranium munitions by the US Military.²

Bernklau continued, ³This malady (from uranium munitions), that
thousands of our military have suffered and died from, has finally been identified as the cause of this sickness, eliminating the guessing. The terrible truth is now being revealed.²

He added, ³Out of the 580,400 soldiers who served in GW1 (the first Gulf War), of them, 11,000 are now dead! By the year 2000, there were 325,000 on Permanent Medical Disability. This astounding number of Disabled Vets¹means that a decade later, 56% of those soldiers who served have some form of permanent medical problems!² The disability rate for the wars of the last century was 5 percent; it was higher, 10 percent, in Viet Nam.

³The VA Secretary (Principi) was aware of this fact as far back as
2000,² wrote Bernklau. ³He, and the Bush administration have been hiding these facts, but now, thanks to Moret¹s report, (it) ... is far too big to hide or to cover up!²

³Terry Jamison, Public Affairs Specialist, Office of the Deputy
Assistant Secretary for Public Affairs, Department of Veterans Affairs, at the VA Central Office, recently reported that Gulf Era Veterans¹ now on medical disability, since 1991, number 518,739 Veterans,² said Berklau.

³The long-term effects have revealed that DU (uranium oxide) is a
virtual death sentence,² stated Berklau. ³Marion Fulk, a nuclear physical chemist, who retired from the Lawrence Livermore Nuclear Weapons Lab, and was also involved with the Manhattan Project, interprets the new and rapid malignancies in the soldiers (from the 2003 Iraq War) as spectacular and a matter of concern!¹²

When asked if the main purpose of using DU was for ³destroying things and killing people,² Fulk was more specific: ³I would say it is the perfect weapon for killing lots of people!²

Principi could not be reached for comment prior to deadline.


1. Depleted uranium: ³Dirty bombs, dirty missiles, dirty bullets: A
death sentence here and abroad² by Leuren Moret:

2. Veterans for Constitutional Law, 112 Jefferson Ave., Port
Jefferson NY 11777, Arthur N. Bernklau, executive director,
(516) 474-4261, fax 516-474-1968.

3. Preventive Psychiatry E-Newsletter. Email Gary Kohls,
, with ³Subscribe² in the subject line.

1:52 AM

Sunday, December 18, 2005  
Read the Fine Print Before Signing Up
for Medicare's Drug Benefit

By Albert B. Crenshaw
Washington Post
Sunday, December 11, 2005; F05

Beyond the complexity of the new Medicare prescription drug benefit,
health care experts have now identified another potential booby trap.

3:50 PM

Saturday, December 10, 2005  
Bewilder Thy Father and Mother

By Harold Meyerson
Wednesday, November 30, 2005; A23

The number one holiday shopping nightmare this year isn't taking place at the malls or the big-box outlets. It's at our senior centers, where Americans over 65 are trying to figure out which private health insurance plan to enroll in to get their prescription drugs paid for under Medicare's new Part D, which takes effect Jan. 1.

As seniors tell the tale, navigating the competing plans is no more complicated than mapping the human genome. In most states, Medicare recipients are presented with dozens of asymmetric options. The plans cover some drugs but not others, with discounts (or not) for generics. Some offer supplemental insurance to cover the gaping hole in the middle of the program (a patient's annual drug expenses exceeding $2,250 are not covered under the law, though coverage kicks back in once the yearly bill tops $5,100); some don't. Some plans re-price their options every day, a boon to seniors who want to make the selection process their life's work.

Simplicity may not always be a virtue, but when presenting life-enhancing and life-preserving choices to seniors, it's not only a virtue but a necessity. You would think the plan's architects -- the president and the Republican congressional leaders -- would have known this. These are the same guys, after all, who insist they want to simplify the tax code. These are the guys who rail against the blizzard of paperwork with which government afflicts us.

Indeed, if you can remember back to the winter of 1993-94, when Bill Clinton unveiled his never-to-be-enacted plan for universal health coverage, you may recall how Bob Dole, then the Republican Senate leader, helped bring it down. After Clinton laid out his proposal, Dole, in his rebuttal, produced an incomprehensible diagram that he said depicted Clinton's incomprehensible plan.

Clinton's plan was damn near incomprehensible. But it was simplicity itself compared with the maze that is Medicare Part D.

There is, however, one particularly helpful guide to all the options: Medicare's Plan Finder, which simplifies comparison shopping on the Medicare Web site. There's just one problem: Most American seniors don't go online. While surveys show that roughly 70 percent of Americans have ventured online, only 23 to 30 percent of seniors have ever done so.

But the seniors don't seem to have been uppermost in the minds of Part D's devisers. The foremost objects of their solicitude were the drug companies, which forked over roughly $30 million in the elections of 2002 (Part D was enacted in 2003), three-quarters of that to Republicans. Not surprisingly, Part D forbids the government from negotiating with drug companies to bring down the price of medications. The Republican leaders also looked out for the private insurance companies, to whose mercies the act entrusted America's elderly. That was a departure, of course, from traditional Medicare, which is one big, simple, popular and successful government single-payer plan on which our seniors gladly rely.

But structuring the drug benefit as a government program (much less a government program that could eat into drug company profits) was never an option for President Bush or Tom DeLay. If that meant that seniors would confront a bewildering array of choices, needlessly high drug prices and a gaping hole in their coverage, well, who would be more resigned to the genius of the American system than seniors?

The paradox here is that this most capitalist of models is also the least efficient. With all our insurance companies competing to cover healthy Americans and shun the sick, and all our drug companies fighting to keep their prices free from negotiation with a mass purchaser, we end up spending close to 15 percent of our gross domestic product on medical care -- far more than any of the nations where the government itself covers health care out of its general revenue. Simplicity in a health care system is not just more intelligible; it's also cheaper. And with those employers who offer decent health care benefits at an increasing competitive disadvantage with the growing number of employers who don't, the logic of and need for a single-payer system steadily grows. Not that logic and need, in the calculus of the men who make our laws, amount to a hill of beans.
© 2005 The Washington Post Company

2:12 PM

Medicare and Medicaid Explained

A comparison between Medicare and Medicaid and explanations of both types of coverage. (Nolo Press)

1:38 PM

Tuesday, December 06, 2005  

Blog*Spot is Happy Again

You may have noticed a bit of an unplanned outage for Blog*Spot blogs yesterday afternoon. We’re really sorry about this. There was an unlikely problem with some of the Blog*Spot machines that took our engineers and operations folks a few hours of work to track down. In something of a Catch-22, both Buzz and Blogger Status are hosted on Blog*Spot, so we weren’t able to get the word out that things weren’t working properly and that we were fixing them.

We didn’t lose any posts because of this, but if you posted to your blog during the outage, there’s a chance that you’ll need to republish to see the changes. (How do I republish my blog?)

The good news is that, were this to ever happen again, we’d be able to diagnose and fix it in minutes, not hours, now that we’re aware of the potential problem. Also, we’ll be improving our outage indicator so that we’ll be able to communicate about unexpected things like this much more directly in the future.

Again, we apologize. We wanted to read blogs yesterday afternoon, too, so we totally understand any frustration you may have had.

3:51 PM

Congress likely to feel pain on Part D

Marie Cocco - Newsday
December 6, 2005

To understand why the elderly distrust the multibillion-dollar
congressional largesse that is the new Medicare prescription drug program, it
is useful to stop by the Hollin Hall Senior Center in Alexandria, Va.

The converted school is a social hub for retirees in the woodsy
suburban hills that roll south from Washington down along the Potomac River.
The neighborhood's brick Colonials and fieldstone ramblers are home to
middle-class people who have made comfortable livings as federal
government workers, or in the military, or for the contractors that serve

The retirees of this community were curious and attentive, but not
panicked, by the presentation they heard the other day from Howard Houghton
Jr. Houghton works for the Fairfax Area Agency on Aging as an insurance
counselor. You might say this is his busy season.

For three months he has appeared at more than 50 community events,
trying to explain the convoluted maze of the Medicare prescription drug
program that begins next month. When he makes his pitch using a Power
Point presentation, Houghton usually starts by joking to the seniors that
he's going to tell them one lie. The first slide calls the presentation
"Medicare Part D Made Easy." "Made easy"- that's the big lie.

At the Hollin Hall center there was no high technology, so Houghton
distributed a chart. It was, by the standard of ghastly complication that
marks the drug plan, a picture of simplicity. Still, it required
flowcharts in four colors, with boxes beneath boxes connected to other boxes.

Each described how different people with different insurance plans and
differing drug needs would have to proceed. "Check with your benefits
administrator to help you decide whether you should keep your current
coverage," it suggested to those with employer, union or military
coverage who were following the blue flowchart.

"If you do not enroll, you will be automatically enrolled in January
2006 to make sure your coverage continues," the chart tells those with
low incomes who now get coverage through Medicaid.

When he was done, Houghton experienced for the first time one of the
other incomprehensible flaws of the Medicare drug program. In this
middle-class crowd of about 100 people - some well into their 80s - not a
single person wanted to sign up.

"I'd hate to try to figure it out, because there are so many different
plans," said Mary Doyle, 79, a federal retiree who already has drug
coverage. Many of her friends, Doyle told me in an interview, do need the
new benefit. "They have the material, but they don't know what to do
about it."

Most elderly people - three-quarters of Medicare beneficiaries,
according to the Congressional Budget Office - already have some kind of drug
coverage. But millions of others sag under the cost of trying to buy
what is often a medicine chestful of prescriptions.

Congress, though, did not create a benefit only for those who need it.
That would mean no political favor would be gained from the more vocal
middle class. It did not even make it workable for the low-income
elderly. Those on Medicaid are to be dropped from that coverage at the end
of this month, and they can randomly be assigned to a private drug
insurance plan that might not even cover the prescriptions they currently
get through Medicaid.

In the Hollin Hall center, where the coffee was hot and the holiday
sweets table overflowing - and where no one, it seemed, was much affected
by this drug plan at all - a shrug of indifference might have been
expected. But irritation bordering on anger was the norm.

There are many who do need the coverage, those at the center told me,
and they shouldn't have to navigate such obstacles to get it. "It's as
inefficient as hell," says Edwin R. Kellogg, 83, who gets his drug
coverage through his former employer, an auto-parts manufacturer. "You know
who's going to benefit from this? The insurance companies."

Well, and the drug companies, too. And perhaps a cottage industry of
consultants. Thank goodness, the one group that sought the most gain from
the Medicare drug benefit - Congress - is likely instead to feel
political pain.

Copyright 2005 Newsday Inc.

2:23 PM

Monday, December 05, 2005  
Web site errors add to Medicare confusion

Those searching for best prices on prescriptions
find faulty information

Copyright 2005 Houston Chronicle
Dec. 4, 2005

Inaccurate information on Medicare's Web site and hot line have plagued
the rollout of the new prescription-drug program, further confusing the
elderly and disabled who already found it daunting to pick among the
competing dozens of private insurance plans meant to save them money.

Most of the problems have centered on Medicare's online Plan Finder,
the program's official Web site designed to compare the costs of
available plans, including monthly premiums, the monthly copayments for a
person's drugs and other out-of-pocket costs.

Sen. Richard Durbin, D-Ill., called attention last week to a computer
data problem that artificially inflated drug prices for a Medicare Rx
Rewards Premier plan offered by Unicare. Medicare officials said they
were working to fix the problem.

Jan Parker, a Houston housewife, found errors when she used the Plan
Finder to look for the least costly coverage for her 88-year-old father.

After double-checking what she found with two insurance companies, she
discovered that some of the copayments Medicare listed for her father's
drugs were in error. For those medications, she found, Aetna's prices
were actually lowest even though Medicare's trumpeted Plan Finder listed
Humana's prices as cheaper.

"They were both wrong," said Parker, "but Aetna's was at least wrong in
a direction that favored us."

Parker and Durbin aren't the only ones to find flaws since the
program's Nov. 15 rollout.

The Center for Medicare Advocacy has documented a number of problems
not only with the Web site but with the toll-free hot line set up to
assist the majority of seniors who don't have access to a computer.

During a test call to 800-MEDICARE, the organization said, a
customer-service representative gave out erroneous information about low-income

'It's a moving target'

Judith Stein, the center's executive director, said she also has been
troubled by volatility in the prices of drugs that are listed by the
insurance plans in the online Medicare Plan Finder. Some of the prices
have changed week to week.

"I don't feel like you can rely on the information yet," said Stein.
"It's a moving target."

The Humana Standard plan for Frank Borreca's five medications is a case
in point.

In mid-November, the plan was listed on the Medicare Plan Finder as the
West University senior's best buy at an annual estimated cost of $700.
A week later, a recheck showed the plan's cost had risen to more than
$1,000. Last week, the cost had dropped to $688.

The driving force behind the plan's shifting cost was Lisinopril, a
blood-pressure medication that Borreca takes. The drug's copayment changed
from $2.60 a month in the first cost analysis to $32.11 a month in the
second and dropped back to the original price a week later. A slight
drop in the cost of another medication caused the plan to drop below its
original estimate.

Even with the drop, Borreca wasn't comfortable with the cost estimates.
According to Humana's Web site, the copayments for all his medications
are slightly different from Medicare's list. Some are slightly higher,
some lower.

"It makes me feel very vulnerable about the whole thing," said Borreca,
who has not yet decided on a plan.

In Humana's plans, officials say a computer glitch in the Medicare Plan
Finder initially confused generic drugs with brand-name drugs, causing
some prices to be wrong.

Furthermore, William Fleming, a Humana vice president, said minor
variations in drug prices are to be expected, and what appears online should
be used as "a guiding post."

Calculating dosage

Other problems surfaced in a Houston Chronicle check of various plans.

When an identical list of drugs was tabulated twice in one recent day,
the Plan Finder calculated different annual costs for the AARP
MedicareRx Plan. Although all the copayments remained the same, the plan's cost
totaled $689.99 in the first calculation and $968.63 in the second.

The popular medication Fosamax, taken to prevent and treat
osteoporosis, has created errors in some calculations. The Plan Finder, which
allows people to choose the most common dosage, automatically calculates a
70-milligram dosage as 30 pills a month. Since the normal dosage at that
strength is one pill a week, people who fail to change the computer
formula view plans with highly inflated costs.

Officials say there is now a note on the Web site that tells people
taking medications in quantities other than 30 per month to type in their

Medicare spokesman Gary Karr acknowledges there were some initial
problems with the Plan Finder, including a logic error that resulted in
overstated drug prices in two plans.

But the errors are being corrected, he said. And overall, he said the
mechanism is offering seniors and others on Medicare an unprecedented
opportunity to shop for the most economical plans.

"I can't go to a tool and put in my drugs and find out which plan gives
me the cheapest drugs," said Karr. "I can't do that at all. This,
however, does allow you to do that."

Karr cautioned, however, that the costs listed on the Plan Finder are
only estimates, not guaranteed prices. And although the prices can
change, he said competition most likely will drive them down.

"There is a little bit of concern on our part that people can get
overly anxious about trying to find the perfect plan," he said. "A lot of
these plans are going to cover the drugs they need and want, and a lot of
them are going to be very good and fit their needs."

Karr could not say how many people have signed up so far for Medicare
drug coverage. Interest, though, has been running high, he said.

On the first day that people could enroll, about 400,000 called the
Medicare hot line. Since then, calls have been running about 200,000 a
day. About 7,500 people have been trained to staff the phones and answer
questions, Karr said.

Extra effort required

Many people, though, say they find the whole process very confusing,
particularly since they have to choose among dozens of plans with a wide
array of premiums, deductibles, copayments and coverage options.
Pharmacist Steven King at Buffalo Pharmacy said he has been swamped
with questions about the changes.

"I have people coming in and telling me they are engineers and they are
mechanical, and they are trying to help their parents," he said. "And
they say they don't even understand it."

King said he can't recommend plans, but he does advise people to check
out three or four plans offered by known companies. He figures people
who sign up for a plan can save as much as 60 percent to 75 percent on
their medications.

Parker, who checked beyond the Medicare Web site for her father's plan,
is glad she took the extra effort to look for the right coverage. She
worries, though, that many seniors won't be able to do that.

"It just shows that if these folks are not computer-literate, or they
don't have a family member that is going to pick up the ball and do it
for them, it's going to be a mess," she said.

10:32 PM

Sunday, December 04, 2005  
You, Too, Can Become a Policy Wonk
in Medicaid Debate

As Congress moves peripatetically toward major cuts in Medicaid and Medicare spending (having, apparently, given up on Social Security reform for the time being), you may wonder what effect the proposed cutbacks might have on your community. Thanks to the Kaiser Family Foundation it just became easier to figure out the answers to your questions.

The Kaiser Commission on Medicaid and the Uninsured has recently placed an interesting and interactive tool online to help you better understand your state—or, indeed, any state you want to investigate. The “Medicaid Fact Sheets” page lets you compare any two states, or one state and the national figures, for a variety of Medicaid-related issues. Did you know, for example, that 59% of Medicaid recipients are children (60% in Arizona)? Or that 69% of the uninsured (73% in Arizona) under age 65 have at least one family member working full-time? Or that there has been a 4.9% decrease nationally in the number of insured individuals under age 65 (that translates to almost six million fewer insured) in the past four years? The reduction in insurance coverage is more striking in Arizona, incidentally—there are 7.3% fewer insured in the Grand Canyon State since 2000, and a 5.7% increase in Medicaid participation.

The Medicaid Fact Sheets contain a wealth of other interesting information, too. Demographic data lets you figure out which states are the most ethnically diverse (Washington, DC, New Mexico, Hawaii, and California lead the nation in Black, Hispanic, “other” and non-citizen populations, for instance), the poorest (West Virginia has the lowest median income, and Washington, DC, the highest percentage of residents below the Federal Poverty Level), and the most rural (Vermont, with 72% of its population outside metropolitan areas).

Are you curious about what portion of each state’s budget is devoted to Medicaid? The “winner” is Tennessee, with over 25% of its budget used to fund Medicaid; Alabama uses only 5.3% of its state expenditures on the program. Arizona, incidentally, is at number 27, with 14.1% of the state budget committed to Medicaid. That compares favorably with the national average of 16.5% (all these figures are for 2003).

The same site can give you information about Medicare participation, spending and coverage by state, as well. States, of course, do not fund Medicare, but the information is still interesting.

Another new database from the Kaiser Commission on Medicaid and the Uninsured is also now online. This second site can give you access to detailed information about any state’s Medicaid program, including services offered, funding mechanisms, copayments and other useful information.

from <Fleming & Curti, P.L.C. - Elder Law Issues>

11:16 PM

SSI Disability application process
a walk-through by someone who has done it
My family has a member who suffers from Crohn's disease. When it came
time to apply for disability it was a very difficult process (as some
of you know either personally or from what you have read). I kept a
journal to help you understand the process and time frames. Please
feel free to mail this link (above URL) to anyone and everyone who has
Crohn's disease or for that matter, any other disease that necessitates
them pursuing SSDI. Wishing you the very best!

10:42 PM

Friday, December 02, 2005  
Steps taken to assure 'dual eligible' poor get prescriptions

December 2, 2005
By Kevin Freking Associated Press

WASHINGTON -- Two weeks after being sued, the government said Thursday
it put in place more safeguards to ensure that poor older people can
fill their drug prescriptions on Jan. 1.

In recent weeks, the government automatically has enrolled about 6
million people in private plans that will offer a new drug benefit under
Medicare. The people in this category are called dual eligibles because
they qualify for both Medicare and Medicaid.

Even if the government misses enrolling just 1 percent of them, that
means about 60,000 people potentially would have no prescription drug
coverage come the new year.

To address that, federal officials said the Centers for Medicare and
Medicaid Services has contracted with two companies. When a customer
enters a store, pharmacists will check with one contractor -- Z-Tech Corp.
of Rockville, Md. -- to determine the customer's eligibility for drug

The pharmacists can bill a second contractor, Wellpoint Inc. of
Indianapolis, which will enlist the customer in one of its drug plans.

"They'll be able to leave the pharmacy with their prescription in hand,
even if there is not immediate evidence of what plan they're in," said
the agency's administrator, Mark McClellan.

McClellan's announcement came after eight advocacy groups sued to
continue existing drug coverage for the dual-eligibles until those
beneficiaries are enrolled in a plan that meets all their prescription needs.

About one-quarter of the dual eligibles live in nursing homes. About 40
percent of them have dementia or other impairments.

McClellan said the announcement was unrelated to the suit.

Deanne Beebe, a spokesman for one of the plaintiffs, the Medicare
Rights Center, said the groups would continue with the suit until they are
assured that every dual-eligible person "who leaves the pharmacy leaves
with the prescriptions they came to fill."

CMS spokesman Gary Karr said Wellpoint was chosen because it has a
pharmacy network in all 50 states. Its contract does not have a specific
value because it will depend on how many beneficiaries are placed into
their drug plan. Z-Tech's contract is valued at about $1.6 million.

On the Net:

Centers for Medicare and Medicaid Services:

Medicare Rights Center:

3:57 PM


Disability matters in the workforce
CBC News Viewpoint | December 1, 2005 |

This column will feature three writers, each with a different disability. They all have something to say about living with a disability and how they view awareness and attitudes toward disabilities in Canada. The column will deal with the rights of people with disabilities, eliminating inequality and discrimination, and issues of self-help and consumer advocacy. Our plan is to rotate among our columnists to have a new column each month.


Hélèna Katz is an award-winning journalist based in Montreal. Her work has appeared in a variety of magazines and newspapers, including Canadian Geographic, Explore, the Globe& Mail, Homemaker's and the Montreal Gazette. She is the author of The Mad Trapper: The Incredible Tale of a Famous Canadian Manhunt.

Some 20 years later, it still ranks as one of the dumbest comments I’ve ever had to deal with. I was about 18 years old and in search of a part-time job to pay my tuition. A friend of my sister’s suggested that I apply for a job as a typist at the Montreal hospital where she worked, so off I went.

Her boss figured out that I had a visual impairment and asked about it. I explained that I’m nearsighted but able to work just fine with a combination of contact lenses and glasses. I then assured him that I could do the job for which I was applying.

“Well, if you have to go outside and stand in the sunshine to see well enough to read, you could do the job but it would take a long time,” he shot back. Huh? Who said anything about running out into the sunshine clutching a piece of paper? I sure didn’t. In fact, the comment was so beyond me that it took me a minute to figure out what he was talking about.

Whenever I need to read anything, including a number in the telephone book, I just park my eyeballs above the page and put them to work. I tried to set my interviewer straight, assuring him that I had absolutely no need to go stand in the sun to read. But he wasn’t about to let some young woman with a disability tell him how she sees the world. Not surprisingly, I didn’t get the job.

Apparently attitudes towards people with disabilities in the workforce haven’t changed much in the past three decades – according to the Canadian National Institute for the Blind. They released a study in November indicating that many educated people who are blind or have visual impairments are living in poverty because they can’t find work. Many of the barriers they faced 30 years ago still exist today.

The report is titled “An Unequal Playing Field: Report on the Needs of People Who are Blind or Visually Impaired Living in Canada.” It found that only 25 per cent of blind or visually impaired adults aged 21-64 have jobs. This compares with 51 per cent of people with disabilities (aged 25–54) and 82 per cent of the general population (aged 25–54) who are gainfully employed.

A lack of education doesn’t explain why only a quarter of blind or visually impaired adults of working age are bringing home the bacon. Nearly 20 per cent of the people the CNIB interviewed had completed one or more university degrees. In fact, 13 per cent had an undergraduate degree, six per cent had a master’s and 0.5 per cent had a PhD.

Another nearly 18 per cent had successfully completed high school, and 14 per cent had graduated with a community college diploma. While 19.5 per cent of folks with visual impairments have a university degree, so does 25 per cent of the general population.

Therefore, people without disabilities are not significantly more educated than people with visual impairments. So why are the latter having more trouble finding jobs?

One reason is the attitudes of potential employers. Like the man at the Montreal hospital where I had applied for work, some are blinded by the disability. They are unable to see past it. In their eyes, the person’s disability overshadows whatever skills and abilities the individual can offer.

Employer attitudes are an obstacle. More than half of working age participants in the CNIB study said that employers don’t see the blind applicant’s potential and a significant number are even unwilling to hire someone with a visual impairment.

This is likely where having personal connections or contacts becomes even more important for landing a job. Among more than 35 per cent of those in the study who did find work, it was through connections, word of mouth a family connection or friend.

Technology has made it easier for people with visual impairments to get around in a sighted world. I use a monocular (like binoculars but for only one eye) to read street signs and see things that are too far away, allowing me to stretch my minimal eyesight. I also bump up the font on my laptop to ease the strain on my eyeballs.

According to the CNIB study, I’m not alone. About 85 per cent of people they polled use technical aids such as tape recorders (56 per cent), handheld magnifiers (52 per cent), screen readers (36 per cent for working-age adults), closed circuit televisions (15 per cent for working-age adults) and digital book players (29 per cent for working-age adults), among many others.

As the authors of the report state: “People with low vision can independently shop, do their banking, and order food in a restaurant if they have access to the portable magnification devices available to assist them with these activities.”

I do all of that – and more. When I was 24 I quit my job, filled up my backpack, grabbed my passport and monocular and travelled around Europe on my own for more than six months.

Granted, most people who are blind or have a visual impairment don’t do that. But if we can get through a community college or university, surely we can adapt to a workplace. Chances are that we have far more experience adapting and finding creative solutions to challenges than most employers do.

After all, we’ve been doing it all of our lives. If I can travel on my own, I think I can I adapt to a workplace – rain or shine.

3:13 PM

Ouch magazine

Ouch magazine "... it's a disability thing"

2:43 PM

"Useless Eaters: Disability as Genocidal Marker
in Nazi Germany"

Available at:

"The methods used for mass extermination in the Nazi death camps originated and were perfected in earlier use against people with physical,
emotional, and intellectual disabilities.

Developed from the article by Dr. Mark Mostert, this website describes
the historical context of attitudes toward people with disabilities in
Germany and how this context produced mass murder of people with disabilities prior to and during the early years of World War II. "

1:46 PM

Thursday, December 01, 2005  
HIV and Smoking: Burning Up Lives


Ten years ago, back in 1995, when I had been diagnosed HIV-positive for about six years, I used to take a long Bette Davis drag on my Marlboro Light and joke that I aspired to die of lung cancer, dahling. The morbid joke was that, with limited, problematic medicines for AIDS, I’d be lucky to live long enough to have to deal with the chronic health problems of people without the virus. Coronary problems? Bring ‘em on! Yuk, yuk.

Well, the joke was on me. Nowadays, with HIV transformed into a sometimes manageable illness—at least for those of us in the developed world with access to combination therapies—people with the virus are contending with the health problems that sadly affect many in late middle age: cancer, cardiovascular problems, diabetes, liver disease, and more. Certainly, those are serious concerns, but many will think them less daunting foes than AIDS-related pneumonia and the other conditions that killed so many so quickly in the ‘80s and early ‘90s.

But what’s scary now is the special and heightened risk that people with HIV face that very few people seem aware of—the nefarious relationship between HIV and smoking cigarettes.

The culture of AIDS is a culture of smoking. Amazingly, HIVers smoke cigarettes at triple the rates of the general population. While around 22 percent of Americans smoke, a recent study showed that up to 66 percent of people with HIV are lighting up. That’s not all. People with HIV are at much greater risk of negative health outcomes related to smoking than those without the virus. Rates of heart attack are on the rise among the HIV-positive; chronic bronchitis and emphysema, too. And many different types of cancers are shown to be spiking among the HIV-positive. Why would people whose health is already compromised engage in an activity that dramatically increases their risk of serious negative health outcomes? What can we do to help people with HIV stub out the danger?

Those were some of the questions asked at the world’s first conference on HIV and smoking on November 15 at Rockefeller University on the Upper East Side. The Lesbian, Gay, Bisexual and Transgender Community Center, in collaboration with the New York City and State departments of health, the American Cancer Society, Memorial Sloan Kettering Cancer Center, the New York City Coalition for a SmokeFree City, and a host of community organizations including Callen-Lorde Community Health Center, Gay Men’s Health Crisis, Harlem United, and the Latino Commission on AIDS joined forces for Light Up Your Life: A Leadership Conference on HIV and Smoking.

More than 200 anti-tobacco activists, AIDS educators, and community leaders living with HIV came together to learn about the powerful and deadly symbiosis between smoking and the virus. What was clear was that there is a new paradigm at play with AIDS these day—infected people are living longer and when death does occur, different things are taking us out; smoky things. In 1996, a study shows, about 45 percent of people with HIV died of non-HIV-related causes. That number, by 2002, was up to more than 70 percent. What’s maddening about this is that people with HIV could be drastically improving their health, and increasing their longevity, by giving up the smokes, but they aren’t.

A new study by Dr. Jack Burkhalter and his colleagues at Memorial Sloan Kettering who study HIV-positive and LGBT smokers showed that out of just under 500 HIV-positive Medicaid recipients in New York State, almost 70 percent smoked and about one-fifth were ex-smokers. The smokers in the group were more likely to use illicit drugs and less likely to think that continuing smoking was bad for them.

As an ex-smoker with HIV myself, I can tell you that many of us smoke to deal with the stress of having a serious, potentially life-threatening disease. It may be counter-intuitive, but the tobacco that’s so bad for us helps ease the burden of the still powerful stigma of the disease, the drudgery of the endless doctors appointments and pill-popping, the fear of rejection from potential lovers, and for some, the mind-numbing boredom of a life on disability combined with the fear that any moment, the other shoe may drop.

Add to this the unintentional collusion of well-intentioned health care workers some of whom still have the mindset of “Oh, let ‘em smoke, it’s the one pleasure they have left.”

Well, it’s time for a change. Just as New York City bit the bullet and lowered smoking rates by an unprecedented 11 percent in the general population over the last few years by the combined impact of the Clean Air Law and aggressive public health campaigns that gave out tens of thousands of supplies of the nicotine patches, the HIV/AIDS community must now change its smoking ways. Programs need to educate people with the virus about the negative health impact of smoking and remind those on Medicaid that the program pays for nicotine replacement therapy.

We need to find novel ways of helping HIVers deal with the stress in their lives by methods other than smoking. Just as with the general population, about three-quarters of HIV-positive smokers want to quit. It’s time we helped them.

QueerQuit 2006, a special one-shot workshop on everything you need to know about making that New Year’s resolution a reality by quitting smoking for good, will take place on Thursday, January 5 from 6 p.m. to 9 p.m. and again on Saturday, January 14 from 1 p.m. to 4 p.m. at the LGBT Community Center. QueerQuit 2006 is free but registration is required. Call 212-620-7310, ext 212 or visit for more information.

Christopher Murray, LMSW, is a substance use counselor and runs the LGBT SmokeFree Project at the Center. He is also on the executive committee of the New York City Coalition for a SmokeFree City.

4:28 PM

Wednesday, November 30, 2005  
Agency: Outdated rules keep disabled out of work

By Andrew Bridges, Associated Press | November 30, 2005

WASHINGTON -- Federal rules used to determine who's disabled are nearly 50 years old and need to be updated to reflect economic, medical, and technological advances, a government panel says.

Many Americans with disabilities are willing and able to work but remain thwarted from seeking jobs by Social Security Administration guidelines that discourage economic independence, according to the National Council on Disability report being released today.

Applicants for disability insurance must prove a complete inability to engage in ''substantial gainful activity," according to rules adopted in 1956. About 6.5 million people received disability benefits in 2002, according to the latest available data.

''Our nation's current disability benefit programs are based on a policy principle that assumes that the presence of a significant disability and lack of substantial earnings equate with a complete inability to work," Lex Frieden, council chairman, wrote President Bush in submitting the report, which assesses efforts to promote employment among the disabled.

Also, federal efforts to make it easier for the disabled to work have had little effect since few people are aware of the incentives and how they affect access to benefits and healthcare, the report found. And the months and years it can take beneficiaries to convince Social Security that they are disabled can leave them leery of enrolling in any employment or training program that might jeopardize their benefits, it said.

''We will be looking carefully at the recommendations," said Mark Lassiter, Social Security Administration spokesman.

Congress and the agency have made it easier for Americans who collect disability to make more while retaining their benefits, according to the council. However, less than half of one percent of those receiving either supplemental security income or disability insurance ever leave the rolls to seek work, the council said, citing Social Security and General Accounting Office reports.

6:29 PM

Tuesday, November 29, 2005  
Doctors and Profits

Letter published in the NY Times, November 27, 2005

To the Editor:

Re "Dr. Saves-a-Lot: To Fight Rising Costs, Hospitals Seek Allies
in the Operating Room" (Business Day, Nov. 18):

We all agree that the cost of health care is too high and that more
must be done to keep health care affordable. But studies show that
many of the problems in patient care are in undertreatment,
particularly with our elderly and people with disabilities.

When I testified last month before the House Ways and Means Health
Subcommittee, I raised serious patient concerns about medical
gainsharing arrangements in hospitals, in which doctors share in
any money they save the hospital.

When gainsharing rewards doctors who choose fewer and cheaper
treatments, devices and diagnostic tests, quality care for patients
is likely to suffer.

Those most in need already face too many obstacles to quality care.
Current Congressional proposals on gainsharing do not ensure that
quality care and patient-centered medicine are as important as
cutting costs. For patients, there is no gain in gainsharing.

Andrew J. Imparato
President and Chief Executive
American Association of People with Disabilities

1:16 AM

Sunday, November 27, 2005  
Medicare 'Plan Finder' Looks for an Audience

Seniors, disabled must navigate a website to determine
the best way to tap the new drug benefit. But with fewer than a third
going online, it's a tough sell.
Los Angeles Times article at:,0,3049579,full.story

6:38 PM


Hot on Parkinson's Trail

Scientists have amassed evidence that long-term exposure to toxic compounds, especially pesticides, can trigger the neurological disease.

By Marla Cone
Times Staff Writer

November 27, 2005

MERCED, Calif. — A thousand acres stretched before him as Gary Rieke walked briskly behind a harvester, the parched, yellow stalks of rice sweeping against his knees. Stopping to adjust a bolt on the machine, Rieke struggled to maneuver a wrench with his trembling fingers.

It was 1988, and Rieke was in his mid-40s, too young and too fit to feel his body betraying him. For two decades, he had farmed in the heart of the San Joaquin Valley, and he knew what he wanted his hand to do. But for some frustrating reason, it refused to obey.

Unbeknownst to Rieke, by the time he noticed the slightest tremor, some 400,000 of his brain cells had been wiped out. Like an estimated other 1 million Americans, most over 55, he had Parkinson's disease, and his thoughts could no longer control his movements. In time, he would struggle to walk and talk.

Rieke, who was exposed to weedkillers and other toxic compounds all his life, has long suspected that they were somehow responsible for his disease.

Now many experts are increasingly confident that Rieke's hunch is correct. Scientists have amassed a growing body of evidence that long-term exposure to toxic compounds, particularly pesticides, can destroy neurons and trigger Parkinson's in some people.

So far, they have implicated several pesticides that cause Parkinson's symptoms in animals. But hundreds of agricultural and industrial chemicals probably play a role, they believe.

Researchers don't use the word "cause" when linking environmental exposures to a disease. Instead, epidemiologists look for clusters and patterns in people, and neurobiologists test theories in animals. If their findings are repeatedly consistent, that is as close to proving cause and effect as they get.

Now, with Parkinson's, this medical detective work has edged closer to proving the case than with almost any other human ailment. In most patients, scientists say, Parkinson's is a disease with environmental origins.

Scientists are "definitely there, beyond a doubt, in showing that environmental toxicants have to be involved" in some cases of Parkinson's disease, said Freya Kamel, an epidemiologist with the National Institute of Environmental Health Sciences who has documented a high rate of neurological problems in farmers who use pesticides.

"It's not one nasty thing that is causing this disease. I think it's exposure to a combination of many environmental chemicals over a lifetime. We just don't know what those chemicals are yet, but we certainly have our suspicions."

For almost two centuries, since English physician James Parkinson described a "shaking palsy" in 1817, doctors have been baffled by the condition.

In most people, a blackened, bean-size sliver at the base of the brain — called the substantia nigra — is crammed with more than half a million neurons that produce dopamine, a messenger that controls the body's movements.

But in Parkinson's patients, more than two-thirds of those neurons have died.

After decades of work, researchers are still struggling with many unanswered questions, such as which chemicals may kill dopamine neurons, who is vulnerable and how much exposure is risky.

Expressed in legal terms, pesticides are not guilty beyond a reasonable doubt — but there is a substantial, and rapidly growing, body of evidence, many scientists say.

Clues and breakthroughs are emerging from an odd menagerie of laboratory flies, mice, rats and monkeys, from bits of human brain, and from farmers like Rieke.

And it all started with a junkie named George.

It was July 1982, and a 42-year-old patient named George Carrillo had lingered in Santa Clara emergency rooms and psychiatric units for more than two weeks. He seemed catatonic, unable to move or speak. Dr. Bill Langston, who ran a neurology department, was brought in to try to figure out what was wrong.

Langston gently lifted the man's elbow. His arm was stiff, moving like a gearshift. Langston had seen this odd, rigid movement many times before, in patients with Parkinson's disease.

But this was no ordinary Parkinson's patient. His symptoms had developed virtually overnight.

The doctors soon tracked the source: a botched batch of synthetic heroin that contained MPTP, a compound that acted like an assassin, targeting the same neurons missing in Parkinson's patients.

Langston had stumbled across a powerful chemical that unleashed an immediate, severe form of Parkinson's.

Still, it was obvious that synthetic heroin wasn't the culprit for most Parkinson's patients. People are exposed to some 70,000 chemicals in their environment. Which others could cause the disease?

A few days later, a chemist contacted Langston. The formula for the heroin compound, the chemist said, "looks just like paraquat." Paraquat has been one of the world's most popular weedkillers for decades. It was a good place to start.

Since that discovery, scientists have conducted hundreds of animal experiments, at least 40 studies of human patients, and three of human brain tissue. They have found "a relatively consistent relationship between pesticide exposure and Parkinson's," British researchers reported online in September in the journal Environmental Health Perspectives.

The work has revolutionized the thinking about Parkinson's, shifting the decades-long debate about whether its roots are genetic or environmental. Among the research leaders are UCLA, the Parkinson's Institute in Sunnyvale, Calif., which Langston founded and now directs, and Atlanta's Emory University, each named national centers for Parkinson's research in 2001 and given a total of $20 million in federal grants.

Head trauma contributes to some cases of Parkinson's, and it probably explains why boxer Muhammad Ali was stricken. But why does it afflict others with seemingly nothing in common, such as the late Pope John Paul II and actor Michael J. Fox?

A couple of genes seem to play a role in early onset of Parkinson's in the small percentage of people who are afflicted at a young age. But for 90% of people who get the disease, a broad array of environmental factors are believed responsible. In fact, when Parkinson's patients have identical twins who carry the exact same genes, most of the twins do not contract the disease.

"All told, the forms of Parkinson's with a known or presumed genetic cause account for a small fraction of the disease, likely 5% or less," epidemiologists Dr. Caroline Tanner of the Parkinson's Institute and Lorene Nelson of Stanford University reported in 2003.

To pinpoint which environmental exposures are most important, scientists are trying to unravel how genes and toxic chemicals interact to destroy brain cells. One leading theory is that pesticides cause over-expression of a gene that floods the brain with a neuron-killing protein.

Exposure to chemicals early in life, followed by toxic exposures in adulthood, may be especially important, triggering a slow death of neurons that debilitates people decades later.

Compounds with little in common, such as a fungicide and an insecticide, apparently can team up to administer a one-two punch, decimating brain cells.

"Pesticides and related industrial chemicals, those classes of compounds, clearly are associated with some cases of Parkinson's," said Gary Miller, a toxicologist and associate professor at Emory University's Rollins School of Public Health. "The question is, how many? 5%, 10%, 50%? In a chemical-free society, people would still get Parkinson's disease. It would just occur later in life and at a lower incidence."

Even 5% would involve 50,000 Americans alive today.

More than 1 billion pounds of herbicides, insecticides and other pest-killing chemicals are used on U.S. farms and gardens and in households. Nearly all adults and children tested have traces of multiple pesticides in their bodies.

So far, animal tests have implicated the pesticides paraquat, rotenone, dieldrin and maneb — alone or in combination — as well as industrial compounds called PCBs, or polychlorinated biphenyls.

Pesticide industry representatives stress that there are many risk factors and insufficient evidence implicating any specific pesticide. Scientists agree that they cannot specify an individual culprit.

"We know for sure that if you expose animals to certain pesticides, it will kill the same neurons as Parkinson's disease. That's a fact. In humans, there is high suspicion, but there is no definite proof," said Dr. Marie-Francoise Chesselet, director of the UCLA Center for Gene-Environment Studies in Parkinson's Disease.

A connection to rural living or farming has turned up worldwide. Scientists first observed a high rate of Parkinson's in rural areas in the early 1980s in Saskatchewan, Canada. Since then a dozen published studies have reported an increase of 60% to 600% among people exposed to pesticides, according to the British scientists' review.

Still, the science of epidemiology has inherent weaknesses. Most of the human studies, for example, relied on patients' memories — most of which cannot be validated — to report their pesticide exposures.

"You need to be cautious in drawing conclusions when you know there are flaws in these studies," said Pamela Mink, an epidemiologist who evaluated the human studies in a peer-reviewed report partly funded by the pesticide industry.

Most patients probably were exposed decades before their diagnosis. Because there is no national registry for Parkinson's, as there is for cancer, no one knows whether rates are high in places such as the San Joaquin Valley.

Among those trying to obtain more definitive answers, UCLA environmental epidemiologist Dr. Beate Ritz has contacted nearly 300 Parkinson's patients and 250 healthy people in Tulare, Fresno and Kern counties. She is pinpointing their pesticide exposures down to the day, the pound and the street corner by overlaying their addresses with California's extensive agricultural database, which details pesticide use on farms since the 1970s.

Also, 52,000 farmers and other pesticide applicators have been tracked by federal researchers since the mid-1990s and one goal is to document their exposure and see how many wind up with Parkinson's.

Animal studies provide more evidence but also have weaknesses. Mink and toxicologist Abby Li, who co-wrote the report financed partly by industry, concluded that the human and animal data "do not provide sufficient evidence" to prove pesticides cause Parkinson's.

Scientists first tested paraquat in rodents, but the findings were inconclusive. Neurologist Tim Greenamyre showed that rotenone, a pesticide, could kill rats' dopamine neurons and cause Parkinson's symptoms. But since rotenone is a natural plant compound that is not used much on farms, it was not a likely source of the human disease.

Neurotoxicologist Deborah Cory-Slechta has presented the most compelling evidence yet on how everyday environmental factors can play a role in Parkinson's disease. Her theory was that testing one chemical at a time for its impact on the brain was misguided.

"It's not how humans are exposed," she said. "You don't get a single dose of a pesticide. You get chronic, low-level exposure."

She injected mice with paraquat and the fungicide maneb. Use of the two sometimes overlaps on farms. Alone, paraquat and maneb did not harm mice in her laboratory. But "when we put them together, we were astounded," Cory-Slechta said.

The most dramatic damage was in mice exposed to maneb as fetuses and then to paraquat as adults. Their motor activity declined 90% and their dopamine levels plummeted 80%.

The amounts used in those tests "are not high levels of exposure. These are very, very low doses," said Cory-Slechta, who now directs Rutgers University's Environmental and Occupational Health Sciences Institute.

Paraquat and maneb are unlikely to be the only combination with such a devastating effect. Yet the U.S. Environmental Protection Agency considers only single exposures when approving pesticides, an approach that "doesn't mimic environmental reality," Cory-Slechta said.

"There may be hundreds, if not thousands, of other compounds that are silent killers of dopamine neurons," said Dr. Donato Di Monte, director of basic research at the Parkinson's Institute.

"Each of these risk factors, they kill 10, 20 or 30% of your neurons. It's like eroding a house on a cliff, and the house finally falls over.

With so much emerging human and animal data, Chesselet predicts that "in two years, we will have a preponderance of evidence" against some classes of chemicals. Kamel thinks specific pesticides will be pinned down within five years.

For Rieke, it is impossible to determine which chemicals may have played a role in his disease. He owned two dry-cleaners — handling industrial solvents for seven years — and for 25 years he mixed and applied at least a dozen herbicides and insecticides on his Merced farm.

At 59, Rieke had to sell the farm and retire. Now 64, he seems 10 years older despite taking seven medications daily.

"Every year, there are things that we all take for granted that my dad can no longer do," said his son, Greg. "There's no cure, and it never gets better. There's not a lot of hope, if you will."

Though it's too late for Rieke, scientists are confident they'll soon be able to predict who is vulnerable to environmental assaults on their brains.

"That would be the Holy Grail for us," Miller said. "To actually pinpoint people at risk of this disease and protect them."


Parkinson's and pesticides

Scientists now believe that exposure to toxic substances, particularly pesticides, could explain some brain cell degeneration that leads to Parkinson's disease, a disorder that affects body movement and coordination.



Neurons or brain cells in the mid-brain produce dopamine, one of two neurotransmitters that help the brain and body communicate to produce smooth muscle movements and body coordination.


People with Parkinson's disease lose 60% to 80% of their dopamine-producing neurons in a part of the mid-brain called the substantia nigra, hindering communication between the mind and body. Scientists think some pesticides may kill neurons in the substantia nigra.


When dopamine is present

In a normal mid-brain, the substantia nigra has cells that are pigmented, or colored black, a byproduct of dopamine production.


Absence of dopamine

Parkinson's patients lack this pigmentation because they've lost so many neurons.


Source: Medline Plus,0,6975967.story?track=mostemailedlink

6:28 PM


Just six days after canceling one PTSD review, the VA “sneaks in” another – Culture of secrecy makes agency designed to help veterans their biggest foe

By Larry Scott

Over the past year, the Department of Veterans’ Affairs (VA), led by Secretary Jim Nicholson, has turned a deaf ear to veterans and quietly made numerous decisions designed to strip veterans of benefits and compensation.

Secretary Nicholson came to the VA with no understanding of veterans’ advocacy and no experience in the healthcare sector. He had been Chairman of the Republican National Committee and Ambassador to the Vatican. As one pundit put it, “Jim Nicholson can write a good political bumper sticker and knows how to kiss the Pope’s ring. That’s about it.”

But, with Secretary Nicholson at the VA helm, veterans have come to feel isolated from the agency’s decision-making processes. And, recent developments have done nothing quell that uneasy feeling.

Earlier this year, veterans were surprised by the VA’s “second signature required” (SSR) policy. SSR applied to approved claims for many “high-dollar” disabilities and stipulated that the claim be re-approved by another VA staffer. However, if the claim was denied by the first staffer, there was no second review.

Veterans’ groups claimed that a SSR policy should apply to all claims for any condition whether they were approved or denied. The fact that the VA chose to apply SSR to disabilities with “high-dollar” compensation was proof to many veterans that the agency was just trying to save money by denying benefits.

The SSR policy was NOT announced by the VA. Only some very good investigative work by Cheryl Reed of the Chicago Sun-Times brought the story to light. This is just one of many instances where the VA has instituted policies detrimental to veterans without making the actions public.

The latest “unannounced” move by the VA is a new review of PTSD diagnosis, treatment and compensation. The VA’s plans came to light on November 16, just six days after they had canceled a review of 72,000 PTSD claims awarded at 100 per cent disability. Pressure from veterans’ groups and Democrat members of Congress forced the cancellation.

The VA’s new PTSD review was not announced by the VA. There was no VA press release. There was no VA press conference. The information was not posted on the VA web site.

Information about the new PTSD review was made public in a press release by Senator Larry Craig (R-ID), Chairman of the Senate Committee on Veterans’ Affairs. The release, in part, said, “The Department of Veterans Affairs announced today that it has contracted with the Institute of Medicine (IOM) on a two-pronged approach to the examination of PTSD.”

Except, the VA hadn’t announced anything. They were using Senator Craig as their conduit to hand out the bad news. Since Craig’s press releases don’t have a high readership, this information has gone virtually unnoticed.

Upon reading Senator Craig’s press release I called the Public Affairs Office at the VA. They had no knowledge of the review. I then called the Institute of Medicine. They had no knowledge of the review.

Senator Craig’s office was more helpful. They forwarded the two documents the VA had sent to them. One document is a Fact Sheet detailing the contract between the VA and the IOM. The other is a Question and Answer sheet. (NOTE: The VA documents are available at the following URL – )

I encourage all veterans to read the VA documents. They detail a plan to redefine PTSD by altering diagnostic and treatment techniques that will then lead to a complete restructuring of VA compensation. Following are a few excerpts from the VA Fact Sheet.

The IOM “…will review the utility and objectiveness of the criteria in the Diagnostic and Statistical Manual of Mental Disorders (DSM- IV), and will comment on the validity of current screening instruments and their predictive capacity for accurate diagnoses.”

This will allow the VA to write an alternate definition of PTSD exclusive of the DSM-IV and institute new methods of treatment outside of normally accepted guidelines. I wonder what the American Psychiatric Association will say about this?

Also, the IOM “…will review the literature on compensation practices for PTSD…and how changes in the frequency and intensity of symptoms affect compensation practices for PTSD; assessing how compensation practices and reevaluation requirements for PTSD compare with other chronic conditions which have periods of remission and return of symptoms; and reviewing strategies used to support recovery and return to function in patients with PTSD.”

And, this will allow the VA to lower PTSD compensation based on “frequency and intensity of symptoms” and “remission and return of symptoms.” The VA will also be looking to deny PTSD benefits based on the concept of “recovery and return to function.” VA Secretary Nicholson has often used the word “recover” (terribly close to the word “cure”) when speaking of veterans with PTSD. The IOM reviews will be completed in a year.

Also, there were two big surprises found in the Question and Answer document. “QUESTION: Why is this study being conducted now? ANSWER: Over the next two years, the [VA] Secretary and the Veterans’ Disability Benefits Commission (VDBC) is (sic) closely examining compensation for all health conditions, including PTSD.”

Surprise number one is that the VA has not announced that Secretary Nicholson is examining compensation “for ALL health conditions.” Veterans can only look forward to fewer benefits and lower compensation with Nicholson directing this endeavor.

The second surprise is Secretary Nicholson’s mention of the VDBC. The VDBC, by law, is “independent of the Department of Veterans’ Affairs.” However, to discover that they are coordinating their efforts should not be a surprise. The VDBC is made up of 13 members who are currently studying all areas of VA compensation. Nine VDBC members were appointed by Republicans. Secretary Nicholson was appointed by President Bush.

Then there is the matter of timing. The VDBC’s charter stipulates that their reports must be done by October of 2006. But, the VDBC has also contracted with the IOM for studies that will not be complete for at least a year. They will be asking for an extension. This means that the VDBC reports from IOM and the VA reports from IOM will be released at the same time, well AFTER the 2006 elections. I don’t believe in coincidence.

Sometime in early 2007, after the elections, VA Secretary Jim Nicholson will be armed with reports from the VDBC and the VA’s IOM studies. Expect a two-fisted attack on veterans’ benefits and compensation from an administration that is the first to shout “Support Our Troops”…until they become veterans.

November 27, 2005

Authors Website:

Authors Bio: Larry Scott ( four years in the U.S. Army with overseas tours as a Broadcast Journalist in Korea and the Azores and a stateside tour as a Broadcast Journalism Instructor at the Defense Information School (DINFOS). He was awarded DOD's First Place Thomas Jefferson Award for Excellence in Journalism. After the Army, Larry was a news anchor on WNBC Radio in New York City. He receives VA compensation for a service-connected disability. Larry is a regular on the Thom Hartmann show on KPOJ radio in Portland, Oregon. Today, Larry resides in Southwest Washington and operates the website VA Watchdog dot Org.

4:53 PM

Saturday, November 26, 2005  
Death, not disability, is the end of the world

CBC News Viewpoint | February 03, 2005

This column will feature three writers, each with a different disability. They all have something to say about living with a disability and how they view awareness and attitudes toward disabilities in Canada. The column will deal with the rights of people with disabilities, eliminating inequality and discrimination, and issues of self-help and consumer advocacy. Our plan is to rotate among our columnists to have a new column each month.

Ed Smith Ed Smith is a retired educator and full-time writer. His humour column runs in several papers and magazines and he has had eight books published. He has been quadriplegic since 1998. Ed lives in Springdale, Nfld.

Clint Eastwood just lost me as a fan, something I'm sure will keep him awake nights.

His latest movie, Million Dollar Baby, has won praise from everyone who's seen it, and perhaps a few who haven't. As a person with quadriplegia I see it as nothing more or less than a scurrilous attack on people with spinal cord injury specifically, and those with disabilities generally.

A couple of years ago I gave a keynote presentation to a conference on disabilities. It was meant to be an upbeat and "go get 'em" type speech and from the standing ovation at the end it seemed I had succeeded admirably. Less than an hour later one of the delegates to the conference (we'll call him Jack) button-holed me in the hotel lobby. He looked me up and down and then spoke in confidential tones.

"When I see you now," he said, "and remember what you used to be like, I think 'twould be better if you were dead."

Jack and Clint would have hit it off well. Million Dollar Baby, which Eastwood both directs and stars in, is the story of a fight manager with a promising young boxer. The fighter gets a spinal cord injury in a fall and at her request the manager (Eastwood) kills her as she lies in a nursing home. The film will likely win all kinds of awards.

Not from me, even if I had them to give. Eastwood has hardly been a friend of people with disabilities. He was sued in 1997 for refusing to include $7,000 worth of accessible bathrooms in his $6.7-million resort renovations. Caring chap, Clint.

So it's what the boxer wanted, right? It's what I wanted, too, when I discovered I was paralysed in almost 90 per cent of my body. I pleaded with my wife to have me shot or put down in some merciful fashion. At the time, I didn't even care if it was merciful. That was for the first two days. Now, six years later, I'm rather glad she didn't.

Actor Christopher Reeve had a similar experience. So did many people I know who have suffered from catastrophic injury.

Incredibly, a preponderance of the population, even in our "enlightened" Canadian society, agrees with Jack that we're better off dead.

Some years ago I did a short editorial segment for CBC radio in which I defended Robert Latimer's second-degree murder conviction for having taken the life of his multiple handicapped daughter Tracy. I disagreed strongly with those who wanted him pardoned and set free. The producers told me later that calls and e-mails were running five to one against my position.

It's no fun being quadriplegic. We have to battle attitudes that believe us to be incapable of speaking for ourselves, unworthy of any accommodation of our physical needs, and something less than "normal." We wait in the snow or the rain outside hotel and restaurant doors that don't have automatic openers, hoping some kindly soul will see us and come running before we perish. We endure while waitresses and store clerks talk over our heads to our spouses or caregivers about what kind of pie or size shirt we want.

We get stuck in cubbyholes in the back of theatres and movie houses. I have almost been physically attacked while asking an able-bodied motorist to remove his vehicle from a handicap parking space so we could get close to an entrance.

While I was in a rehabilitation centre in Toronto my wife called several churches to see if they were accessible. Perhaps we chose the wrong churches or the wrong denominations or the wrong religions. She didn't find one that wouldn't have put me at the front of the church to be stared at, or in the middle of an aisle to be an obstruction.

Despite all this, the vast majority of spinal cord injured persons have a good quality of life. We have family and friends, hobbies and pursuits, occupations and pleasures. Life has changed irrevocably, but it has not become a hell so tormenting that we'd be better off dead. On good days it's downright bearable!

Million Dollar Baby sees no opportunity for any quality of life with spinal cord injury. Its premise is that unless you can walk and/or use your hands your life has no value.

I know several people with quadriplegia who swear up and down that they are really happy. Some of them have even said they're glad they had the accident because it changed their lives for the better. A friend who is also quadriplegic assured me not long ago that he didn't have a complaint in the world.

Although we all admired Christopher Reeve for many reasons, some of us had problems with his obsession that the only goal in life worth pursuing is to walk again. That just isn't going to happen for many of us so we get on with the task of making a contribution to our community in whatever way we can, and being as happy as the next person while doing it.

Being physically disabled is no picnic, God knows. But, Clint and Jack, it isn't the end of the world.

5:16 PM


Cops to patrol disabled parking

By Tonya Maxwell
Published November 25, 2005

Stepping out of the driver's seat of her car at Orland Park Mall, Eileen Sullivan pointed to her bum knee and hip as reasons she parks in the disabled parking spot.

"There's only a couple of stores I can go to. I can't walk too much, otherwise I get sore and my leg starts burning," the 77-year-old Tinley Park resident said Wednesday of her knee and hip replacements.

During peak shopping hours, snagging the front-row space Sullivan needs can be a challenge. Anyone using one who is not entitled to those spots "ought to get a great big ticket," she said.

Ten police officers with the Illinois secretary of state's office plan to patrol at Woodfield and Orland Park Malls on Friday. Drivers caught parking illegally in the disability spaces will get a minimum $100 fine.

The crackdown will continue at various shopping areas in the state throughout the holiday season, said Elizabeth Kaufman, spokeswoman for Secretary of State Jesse White's office.

Anyone caught abusing the spaces also can face a possible driver's license suspension, and those caught in possession of a fraudulent disability placard will face felony charges, officials said.

A sting in the Loop that ended recently netted 113 violators in a month, Kaufman said.

"The majority of what we see is someone abusing a relative or friend's placard," she said. "What our police try to do is find out where it was received."

Currently, about 612,000 disability placards and 83,000 disability license plates are registered in Illinois, Kaufman said.

Under a new law that takes effect Jan. 1, anyone caught illegally using a disability parking space can face up to a $500 fine.

5:02 AM

Friday, November 25, 2005  

Baby boomers will change the perception of disability

Scripps Howard News Service

There's a train wreck about to happen, and nothing can be done to stop it. All we can do is prepare for it and use it to our advantage.

The baby boom generation numbers about 76 million people, and they are rapidly aging. With advancing age, Boomers will increasingly be staring disability in the face.

This year the leading edge of boomers turns 59. Retirement will soon become reality. In fact, the Census Bureau tells us that between 2010 and 2020, people age 65-84 will increase by 39 percent (about 13 million people). And that number will go from 34 million in 2010 to 47 million by 2020.

The numbers are staggering and fast-approaching.

As they get older, Boomers will routinely experience a loss of hearing. It was recently reported about 31 million people have some level of hearing loss. Other ailments facing boomers will include vision impairments and difficulty with mobility. These latter two problems are projected to affect more than 30-40 million people.

Issues regarding accessibility will surely come to the foreground. Access to public facilities. Access to transportation. Issues faced in our everyday lives. As well as people with simple impairments who do not consider themselves "disabled."

We all fall under the same umbrella. Our causes and our issues overlap. But the causes of people with disabilities will fall on deaf ears and go unheeded unless an appropriate marketing approach is employed.

That's right. Marketing. Because our objectives are no different than those selling a concept or a product and turning it into action. Our target market may be a county commission, or a state legislature, or a local chamber of commerce, or mall management, or even one individual shopkeeper.

The tangible fruits of this marketing can take many forms. Automatic doors, curb cuts, Braille menus, accessible city transportation, access to public meetings or even to a house of worship. The common thread to realize these goals is public awareness. And that's how marketing concepts can be used to accomplish our goals.

The disability rights movement needs to blend with the causes of all those boomers who will join our ranks. It needs to become an integral part of the public's general agenda, and not merely a separately defined special interest group.

Because one thing senior citizens know how to do is to vote. And we do it at a much higher rate than younger people.

7:11 PM

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