Posts Tagged ‘NIH’

Autism advocates, federal officials testify to Congress about autism rates, vaccines, and research

December 2, 2012

Autism advocates and government officials testified in front of a congressional committee Thursday about the federal response to the dramatic increase in autism diagnoses in recent years.

One in every 88 babies born in the U.S. will develop autism, according to the Centers for Disease Control, a 23 percent increase since 2009 and a 78 percent increase since 2007. In the 1960s, autism was believed to affect one in 10,000 children in the U.S.

Members of the House Oversight and Government Reform Committee questioned representatives of the National Institutes of Health and CDC about research priorities and subsequent results. A second panel of autism advocates testified about concerns ranging from research priorities to services for people with autism. See the video here.

Some of the committee members harshly criticized the NIH and CDC for a lack of effective results, while agency officials at times struggled to come up with answers.

Some highlights from the hearing:

Congressmen, led by Rep. Dan Burton (R-IL), a longtime proponent of vaccine safety, urged NIH and CDC to get mercury out of all childhood vaccines. Thimerosal, a mercury preservative, was removed from most, but not all childhood vaccines by 2003.

Representatives of NIH and CDC claimed that much, and possibly all of the increase in autism rates can be accounted for by better detection, a claim that was questioned by many congressmen and disputed by Mark Blaxill of SafeMinds.

“Some observers have claimed this rise is not real,” Blaxill told the committee. “That numbers are going up because of ‘better diagnosing.’ While it is true that we now diagnose autism with better tools, that doesn’t mean there is some ‘hidden horde’ of overlooked autism cases. The old surveys didn’t just miss 99% of children with autism. Anyone who reads them will see the obvious: it’s clear the researchers were diligent in finding cases and confident that they found the vast majority of children. It’s horrible but true; reported rates of autism have risen simply because there are more cases of autism.”

Blaxill also urged the Interagency Autism Coordinating Committee to focus on environmental causes of autism instead of genetics.

Vaccine critics have also questioned why the government hasn’t conducted studies of vaccinated versus unvaccinated populations. Rep. Bill Posey (R-FL), asked this very question of Collen Boyle of the CDC.

She talked about vaccines in general, then was interrupted by Posey, who clarified the question: “So clearly, definitely, unequivocally, you have studied vaccinated versus unvaccinated?”

“We have not studied vaccinated versus unvaccinated,” replied Boyle.

“Never mind. Stop there. That was the meaning of my question. You wasted two minutes of my time,” said Posey.

To read the entire article on Examiner.com, click here.

HHS, NIH and other federal agencies should hire more employees with autism and other disabilities

July 13, 2010

Special Comment

The federal government’s Schedule A Programintended to facilitate the hiring of people with disabilities is severely underutilized. The hiring authority has rarely been used to hire people with cognitive, developmental or psychiatric disabilities. The federal government should develop and implement policies that ensure that people with autism and other disabilities are given an equal opportunity to contribute to the missions of government agencies.

Background

The unemployment rate of people with disabilities is approximately 70 percent. The Office of Personnel Management (OPM) created the Schedule A hiring authority to allow for greater recruitment and hiring of individuals with disabilities. Schedule A allows federal agencies to “provide disabled individuals a unique opportunity to demonstrate their ability to successfully perform the essential duties of a position with or without reasonable accommodation.”

OPM states that the Schedule A certification is used to “appoint persons who are certified that they are at a severe disadvantage in obtaining employment…Certification also ensures that they are capable of functioning in the position for which they will be appointed.”

The Department of Health and Human Services and the National Institutes of Health

Unfortunately, the government’s record on hiring employees with disabilities through the Schedule A program has been abysmal. The agencies that should be leading the government are among the worst offenders, starting with the Department of Health and Human Services (DHHS), its Operating Divisions including the National Institutes of Health (NIH), and the National Institute of Mental Health (NIMH).

To see the rest of my article on Examiner.com, click here.


President Obama Should Know Better

March 20, 2009

President Obama’s gaffe last night on the Tonight Show was unfortunately all too reminiscent of the federal government’s attitude toward people with disabilities.

First of all, when Obama said of his bowling, “It was like the Special Olympics or something,” it was obviously very insulting to people with intellectual or cognitive disabilities.  It’s very possible that Obama talks this way among his peers.  To not understand how offensive that statement is shows a glaring unawareness.  I’m sure there are a lot of Special Olympians who could beat Obama in bowling.

If Obama had made a racist or religious joke, the media would have been all over it.  But a joke against people with special needs?   That’s acceptable. 

I volunteered for two years as a soccer coach for the Special Olympics in Maryland, and I went to a Special Olympics event in California last year (see the two photos I took).  I started volunteering for sports programs for kids with disabilities 10 years ago, and I currently work with kids with autism (www.coachmike.net), so I know a little bit about this subject. 

Special Olympics, Long Beach, California, summer 2008

Special Olympics, Long Beach, California, summer 2008. Photo by Mike Frandsen

 

(Obama sits up there, trying to be smooth and cool.  In fact, let’s face it.  The reason that Obama got elected really isn’t any different than why every U.S. president has gotten elected in the last 40 years.  He was a better speaker than his opponents and people vote mainly on image.  Look it up – of the past 10 presidential elections, it is ALWAYS the candidate who has a better image – the one who is more friendly, possesses more charisma, and is a better public speaker.  The only possible exception was in 2000 when you could argue that Gore had a better persona than Bush [it was about even because while Gore was a much better speaker, he was more stiff and Bush was much more folksy], but many say Gore actually did win that election and he did get half a million more votes anyway. 

It’s why Obama beat Hillary – he was “cooler.”  Experience didn’t matter – funny – it always matters when I apply for a job but it doesn’t for the presidency.  I’m not saying people don’t vote for who they think will be the better president, I’m just saying that people vote for candidates who they like the most based on their personality and charisma.)

I personally believe that Obama is one of those people who is somewhat fake and unauthentic because he constantly says things and does things that are calculated to improve his image.  Not that you would expect anything other than that from a politician.

I’m not anti-Obama – I agree with Obama and the Democrats on most issues – for example, people should have a fair chance at health care – the U.S. policy on that is shameful (in fact, if I ever run for office you can look back at this statement:  “I am NOT proud of my country because of our health care situation.”  And I will never retract that statement).  And we need a clean environment to reduce the incidence of autism, breast cancer, and other disorders and diseases.

But back to the point.

There is a startling unawareness in the federal government with respect to hiring people with disabilities.  It starts at the top with the President, filters down to the cabinet members, down to the directors of the federal agencies, and down to the management and hiring personnel.  I’m not saying Obama is worse than other presidents in giving a fair chance to people with disabilities, but I’m not sure he’s any better.  See my report at http://www.coachmike.net/special_report.php.  I concluded that “The federal government’s Schedule A program intended to facilitate the hiring of people with disabilities is severely underutilized, especially in hiring people with cognitive and psychiatric disabilities.”  

Schedule A is a hiring authority set up by the government to help level the playing field and make it easier to hire people with disabilities, whether they be cognitive/intellectual (the government still uses the outdated “mental retardation” terminology), psychiatric, or physical.  (There still isn’t a developmental category to cover autism). 

The Office of Personnel Management created the Schedule A program more than 20 years ago to allow for greater recruitment and hiring of individuals with disabilities.  It allows federal agencies to bypass the competitive process to provide disabled

Special Olympics, Long Beach, California, summer 2008

Special Olympics, Long Beach, California, summer 2008.

 individuals a unique opportunity to demonstrate their ability to successfully perform the essential duties of a position with or without reasonable accommodation.  OPM states that the Schedule A certification is used to “appoint persons who are certified that they are at a severe disadvantage in obtaining employment…Certification also ensures that they are capable of functioning in the position for which they will be appointed, and that any residual disabilities are not job-related.”

In almost all cases in which the hiring authority was used, hires of people with physical disabilities outnumbered those with cognitive and psychiatric disabilities by a very wide margin.

People with disabilities have a 70% unemployment rate.  This figure only includes people who are willing and able to work and it’s still 70%. 

The only problem is that Schedule A isn’t mandatory, so it’s woefully underused except by a few agencies.  Take the National Institutes of Health as an example.  You would think this organization would be better, not worse, than other agencies at hiring people with disabilities through the Schedule A hiring authority.  In fact, I believe that the facts show that NIH discriminates against people with disabilities in their hiring process.  

From 1998 to 2008, NIH, with nearly 18,000 full-time employees, hired just four people with cognitive disabilities and one with a psychiatric disability through the Schedule A program.  I learned this information through Freedom of Information Act requests.

I first notified NIH in 2004 that they had been negligent in hiring Schedule A employees with disabilities.  I also notified them in 2005, 2006, 2007, and 2008.  Their response was almost always no response.  Each year I contacted the NIH Director, Equal Employment Office, Human Resource Officials, Selective Placement Coordinator, Institute Directors, and Ombudsman multiple times.  I have 200 pages of documents to prove it.  When I brought the subject up, several times speaking at the Interagency Autism Coordinating Committee, parents applauded but scientists and NIH leaders laughed at me. 

To this day, NIH refuses to comment on the report, and refuses to take any action to improve the situation.  After eight years at NIH (the last five as an employee), I threatened to quit in December 2006 if NIH did nothing to improve the situation.  They did nothing, I quit, and two years later NIH still hasn’t taken any action.

(This is a little off topic, but now I need a federal job again because the kidney transplant I will need soon will cost $180,000 including medications for the first year, and my insurance currently only covers 80% of it whereas the federal insurance covers 100% – see www.mikeneedsakidney.com.  But NIH is treating me like a private company would treat a whistleblower.  Instead of trying to improve the situation that I brought attention to, they are ignoring it, and holding the fact that I brought it to their attention against me.).

When I contacted Congressman Chris Van Hollen’s (D-MD) office, they promised to respond.  They ignored the issue for more than a year and then stonewalled until they thought I went away. 

You may say that it costs too much to include people with disabilities in the workforce.  But in fact, it costs too much not to do it.  You can get productivity at a relatively low price by hiring people with disabilities, and prevent them from relying on government programs like Social Security disability when possible.  (Same with health care – a little bit of preventative care goes a long way to save money in the long run).

The success or failure of any organization starts at the top.  The President’s remarks were dismissive of the abilities of people with special needs.  There is an attitude throughout the government that people with disabilities are to be ignored.  Taking action would be to admit that there is a problem, and agencies such as NIH are more concerned with their image than doing the right thing, so they would never admit that they have been deficient in hiring people with disabilities through the Schedule A hiring authority.  

The media doesn’t care either.  As I write this at 2:30 p.m., I just saw an interview on MSNBC with Chuck Todd about Obama’s appearance last night on the Tonight Show.  Todd said the show went great for Obama.  Not once in this ridiculously long interview did they bring up the President’s remarks about the Special Olympics.  The interview went so long that it delayed the Presidential Press Secretary’s press conference.  If Hillary had made those remarks, you can bet that MSNBC would be all over it. 

As for NIH, if they can’t handle hiring people with disabilities through the Schedule A program, and they were made aware of this problem five years ago, I’m sorry to say but you have to question whether they can handle other important initiatives such as stem cell research.  Don’t get me wrong – I think stem cell research is critically important to save lives and improve the quality of lives, and as much research should be done as soon as possible.  However, it would be a mistake to just throw a ton of money at the problem like the government did for the banks just because they are supposedly smarter than us. 

If there are competing organizations that can get the job done, they should be considered as well.  Either way, there should be a stringent process that funding goes to the programs that are most deserving and will be held accountable for what they do.  This process should be stringent but also expedited so that bureaucratic red tape doesn’t delay research.  You can argue that stem cell research is more important than ensuring that people with disabilities get a fair chance to contribute to the missions of government agencies.  I would say they are equally important – but they are not mutually exclusive.  The government should do both. 

This blog entry has been a little scattered, but I thought it was important to address the subject quickly.   In summary:

1.  The NIH and other federal agencies must do a better job of hiring people with disabilities using the Schedule A hiring authority.  The only way to do this is to make it or a similar program mandatory because otherwise, the government will discriminate.  

2.  President Obama (“Teflon Barry”) should set an example by hiring people with disabilities to work in the White House.  He should also give a better apology.  He should also ensure that the federal government is held accountable for giving people with disabilities a fair chance, otherwise, hiring officials and management will do the same things they have always done about this situation:  ignore it or laugh about it. 

Please see my websites:  www.coachmike.net and www.mikeneedsakidney.com.  

Finally – I reviewed this post and was going to tone it down because I thought it might be a bit harsh, but I actually decided to add to it and make it stronger.  I think Obama is a good person and a good president – we shouldn’t be afraid to criticize him, though, when he deserves it.  I’m a big Redskins fan but I’ve criticized them mercilessly for the last 15 years.  As for this and other blog posts, I try to be honest and tell it like it is.  Hopefully you appreciate it but if not, it is what it is.  



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