In January 2007, I left my 6-figure government job at NIH along with the lifetime job security and great benefits. I left to protest NIH’s lack of action on an issue I feel strongly about. I lobbied strongly for several years for a person with a Schedule A Certification of a disability, with impeccable credentials and very relevant experience, to be granted a job interview at NIH. See excerpts below from letters I wrote to NIH Director Elias Zerhouni for more details.
The person for whom I advocated, from 2003 to 2007, to get a job interview at NIH through the federal government’s special hiring authority for people with disabilities, does not have autism. However, NIH’s inaction on this issue is emblematic of a problem for an agency whose mission is to improve the health of all people. The problem is that people with disabilities are not only inadequately represented, but that government agencies are not implementing the programs that have been created to help decrease this disparity.
Excerpts of the letter I sent to NIH Director Elias Zerhouni, March 29, 2005
"By way of background, the Office of
Personnel Management has created the Schedule
A program to allow for greater recruitment
and hiring of individuals with disabilities.
It allows NIH to bypass the competitive
process to provide disabled individuals a
unique opportunity to demonstrate their
ability to successfully perform the essential
duties of a position with or without
Between January and March of 2004 I sent copies of a resume, letter, and Schedule A certification to HR Officials and Communication Directors in all 28 ICs as well as the NIH Employees Council on Disabilities, NIH Office of Equal Opportunity, and Selective Placement Program Coordinators for other agencies (NIH has not appointed a Selective Placement Program Coordinator according to the OPM web site). Very few of the contacts responded to the letter, sent between January and March of 2004, and most of those responses did not offer any advice other than having acknowledged receiving the letter.
OPM states that the attached 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."
I submitted a Freedom of Information Act (FOIA) request to NIH to request how many times in 2003 and 2004 NIH used the Schedule A in the hiring process. The NIH FOIA Office responded that no such records existed.
It is ironic that an organization whose mission is to "work to improve mental health through biomedical research on mind, brain, and behavior," (the National Institute of Mental Health) does not seem to have an equivalent program aligned with that mission to ensure that those disadvantaged with disabilities can fairly contribute to advancing that mission.
As the steward of medical and behavioral research for the U.S., the NIH aims to "reduce the burdens of illness and disability" and "exemplify and promote the highest level of scientific integrity, public accountability, and social responsibility in the conduct of science." In addition, the NIH Policy on Equal Employment Opportunity and Diversity Management (January 26, 2005) states that "the process is designed to improve the full participation of minorities, women and individuals with disabilities."
I believe that NIH and other federal agencies should not only develop policy on making the hiring process as inclusive as possible, but should also be accountable to those claims by ensuring that the policies are effectively implemented in a way that will mutually benefit the agencies, the public whom they represent and work for, and the employees who conduct work for these agencies. I also believe that NIH should take a hard, detailed look at the implementation of its policies in "attracting, developing, and retaining the most qualified workforce to support NIH's achievement of its strategic mission." (NIH Director's Memo to IC Directors and OD Senior Staff on EEOC Management Directive 715 (MD-715), July 12, 2004).
Given its position as the "steward of
medical and behavioral research for the
Nation," NIH should be particularly
sensitive to attracting and retaining people
who are traditionally underrepresented,
including those with disabilities. A failure
to proactively include employees from all
segments of society in the hiring process
threatens to leave these individuals
languishing with difficulties and
In 2006, I submitted a second FOIA
request to NIH to request how
many times in 2005 and 2006 NIH used the
Schedule A in the hiring process. The NIH
FOIA Office responded that no such records
In 2007, I submitted a third FOIA request to NIH to request how many times in 2007 NIH used the Schedule A in the hiring process.
Excerpts of the letter I sent to NIH Director Elias Zerhouni, Dec. 21, 2006
As you are aware, I have repeatedly sent the
Schedule A certification and resume of
…around NIH for three years, to people
including, but not limited to, the
"Selective Placement Coordinator,"
Human Resources contacts in all Institutes,
the Director of NIH, and the NIH
My resignation can be considered a protest against not only NIH's inaction in this situation, but on the discriminatory hiring process in general against people with disabilities – whether they be mild or severe, physical, intellectual, developmental, psychiatric or otherwise.
Comments on Autism Research at the National Institutes of Health (NIH)
I believe the efforts at NIH in autism research are well intentioned and some good work is being done, but during my brief time as a volunteer at NIMH I noticed several areas that could be improved. In November 2006, I attended the biannual meeting of the Interagency Autism Coordinating Committee. The IACC was made up of several organizations under the Department of Health and Human Services, including five NIH Institutes:
There were a couple of weaknesses about this setup, which could be remedied by the following:
As I sat in the IACC meeting alongside researchers, clinicians, government representatives, advocates, and other members of the public, the frustration of the parents was obvious. Parents want research that leads to results and more effective treatments and services for their children and adults with autism. Much of the focus on autism research and services, rightfully so, focuses on children. But what happens to the children when they become adults, and the resources for services dry up?
The Individuals with Disabilities Education Act (P.L. 101-476) is a federal law that guarantees a free and appropriate public education for every child with a disability. Unfortunately, though, once a student turns 21, there are very few educational or employment opportunities available for people with disabilities. The New York Times editorial, Studying Autism Isn’t Enough by Cathryn Garland and Michael O’Hanlon (Nov. 21, 2006) touches on some of these issues:
"If we do not help these children, we are essentially condemning them to a lifetime of disability, unemployment and, for many, institutionalization. On human grounds, this is tragic. But it's also bad economics. The few hundred thousand dollars needed to do intensive early intervention for four or five years -- while a lot -- is only one-tenth the expected cost of supporting someone for a lifetime on the dole."
IACC Update - 2008
In November 2007, the IACC met for the first time in a year.
The theme of the meeting seemed to be getting diverse groups to work together for autism research and other efforts. There was much talk that efforts should be coordinated and not done in separate "silos." IACC members presented their Draft Strategic Plan for autism research. The National Database for Autism Research was mentioned as a tool to share information. And representatives from Autism Speaks emphasized that the recent merger of Autism Speaks, the National Alliance for Autism Research (NAAR), and Cure Autism Now (CAN) will also coordinate advocacy and research efforts.
I firmly believe that one area that is deeply ingrained in the NIH culture that needs improvement is the insistence that NIH is solely a research organization whose responsibility completely ends at conducting its research, without any regard to coordinating with services that are desperately needed today to improve the lives of people with autism. This attitude is at best short sighted, and at worst, an attitude perpetuated by elitist academics who sit in ivory towers rather than work in the trenches and actually help people with autism. After all, NIH is part of the Department of Health and Human Services.
Among the stated goals of NIH related to its mission are to exemplify the "highest level of public accountability, and social responsibility in the conduct of science." Further, the NIMH is charged with developing "more effective, safer, and equitable treatments that have minimal side-effects to reduce symptoms, and improve daily functioning. Presumably these treatments and improvements will involve more than just the development of pharmaceutical drugs. Another stated goal of the NIMH is to rapidly disseminate science to "mental health care and service efforts."
An example of how this disconnect between research and real world services can be bridged – rather than having completely separate silos for each area – is greater federal employment for people with disabilities, specifically autism. While NIH has made very limited progress in using the Schedule A program to hire people with disabilities – it was used three times in June and July of 2007 after it had apparently never been used between 2003 and the first half of 2007, and likely had never been used before that – none of these uses were to hire people except in the "severe physical disability" category. Though this progress is laudable, there is no evidence that this program was ever used to hire someone on the autism spectrum or with a psychiatric disability. NIH points out that with more than 17,000 employees, it is a certainty that that there are some people already working for the agency who represent various disabilities. However, the point is that this Schedule A program, specifically set aside to help reduce the more than 70% unemployment rate of people with disabilities – people who want to work and are more than capable of working - is severely underutilized and virtually ignored by NIH.
In fact, the entire federal government’s categorization of the Schedule A program excludes most people on the autism spectrum. The Schedule A Program lists people with disabilities in three broad categories. The first category, "severe physical disability," would only rarely apply to a person with autism. The second category, "mental retardation," may apply to a percentage of people on the autism spectrum, but it is now known that far fewer people with autism than previously thought have mental retardation, a term, which incidentally, is being phased out in favor of "intellectual disability." Finally, the third category, "psychiatric disability" does not cover those with autism, which should be classified as a "developmental disability," a term that would be much more accurate and inclusive. I informed NIH, HHS, and OPM about this oversight in 2006, but I don’t expect any changes before 2009, and only then with continuous prompting.
Also on the topic of psychiatric disabilities, it is important to note that NIH and the federal government state that this third category is only for "hiring people who have recovered from mental illness." Unfortunately, some and perhaps most mental illnesses are chronic, so this wording discriminates against those who retain a diagnosis of a mental illness or psychiatric disability. These people should be given a fair chance to work as well rather than being explicitly discriminated against through government policies. Let’s hope that the federal government does not restrict employment of those on the autism spectrum to those who have “recovered,” because while some people on the spectrum make remarkable progress and a select few do eventually become indistinguishable from the general population, most people with autism do not become completely "recovered."
 Congress signed The Combating Autism Act (P.L. 109-416) into law on December 19, 2006. The law requires that the Department of Health and Human Services (HHS) establish a new Interagency Autism Coordinating Committee (IACC) to coordinate efforts within HHS regarding autism spectrum disorders. The IACC is being reshaped to operate under guidelines of the Federal Advisory Committee Act.