The Employment Challenge in Multiple Chemical Sensitivity

by Pamela Reed Gibson, Ph.D.
James Madison University

Originally part of an article named 'Understanding & Accommodating People with Multiple Chemical Sensitivity in Independent Living'.

Another great stressor in MCS is that of work. In my life disruption study, less than a third of the MCS participants were still working outside of the home. Sometimes it was the workplace that caused the person to develop MCS to begin with. Over half of those who reported an initial known exposure that damaged their health reported that it occurred in the work environment. When work causes the MCS, the situation is made worse by the fact that the worker is faced with compensation and liability issues at a time when their personal resources are at a very low ebb.

HOLDING ONTO EMPLOYMENT FOR THOSE WITH MCS

Even if work was not the initiating exposure, the person may find that s/he now is made sick by exposures to any number of workplace toxics including pesticides, new carpet, paint, copy fumes, fragrances on co-workers, petrochemical heat, or electromagnetic frequencies. By the time a person comes to the Center for Independent Living for help, his or her employment situation is most likely at crisis level. When a person asks for workplace accommodations, there is often resistance from both co-workers and superiors. If colleagues are uneducated about MCS or get their information from misguided sources, they are unlikely to be sympathetic or helpful. Unfortunately, people with MCS have been harassed in the workplace, including the extreme measure of persons intentionally exposing them to toxics. Persons in these kinds of situations are therefore likely to be suffering considerable upset around the issue of work.

If the person has continued to try to work without accommodations, he or she may have deteriorated in health, and, as a result, may now no longer be able to work at all. People who are the primary income earners in families may be most at risk for this because they feel a responsibility to provide for their loved ones. Employment should be preserved whenever possible in order for persons to maintain their income, benefits, work-related self-esteem, contacts with other people, and sense of being productive. But for most people with MCS, this cannot be accomplished without accommodations. Being familiar with disabilities in general and the ADA, you are in a position to help the person write a Request for Reasonable Accommodation. The request for accommodations should be in writing and accompanied by a physician's letter if possible. In this legal document the person can request the workplace adjustments that will limit workplace exposures to toxics and allow the person to perform her or his work. It will also hopefully halt or slow the spreading phenomenon and help maintain the worker's level of health.

Some workplace changes, such as using an air cleaner, can be done by the individual without help from the workplace. People can also unplug or turn off equipment and lighting in their personal workspace if they emit electric or magnetic fields that trigger their symptoms. Changes that can be requested from the workplace include the use of less toxic cleaners, a reduction in fragrance on co-workers, less toxic pest management, and notice regarding any painting or construction. Changing airflow and heating is more difficult although it is certainly reasonable to ask that HVAC systems be cleaned and maintained properly. If the workspace is taking in toxicants from other parts of the building, or the air quality is poor for other reasons, the person may have to ask to relocate her or his office.

Accommodations are more difficult to obtain for common areas than for a personal workspace. For example, it may be difficult to talk employers into discontinuing the use of "air fresheners" in the bathrooms. The employee will likely have to do the research and suggest product changes such as using baking soda or fragrance-free kitty litter, changed on a regular basis. Citrus-based air fresheners are another possibility but are not tolerated by most people with MCS.

People should probably be judicious, asking for only what they really need. An employer does not have to make an accommodation that imposes an "undue hardship" on the operation of the business or organization. Undue hardship means "significant difficulty or expense" when taking into account (on a case-by-case basis) the structure and resources of the institution or workplace.

Employers are able to make many MCS accommodations with little expense. Limiting smoke and perfume in the workplace, using less toxic air fresheners or paints, providing an air cleaner for employees, and using less toxic bug control are all reasonable strategies for reducing workplace toxics. The employee may want to use the booklet Multiple Chemical Sensitivities at Work: A Training Workbook for Working People by the Labor Institute (1993) as a workbook for possible accommodations for those with MCS. Some suggestions for accommodations are listed below. If the employee does receive some cooperation, she or he then needs to stay abreast of plans for remodeling, repairs, and pest control so that she or he can suggest less toxic alternatives and/or avoid the toxic exposures that may be associated with these activities.

Potential Workplace Accommodations for MCS:

1. Provide a workable window that opens for ventilation.
2. Reduce fragrance on co-workers.
3. Replace toxic pesticides with less toxic alternatives, such as using flyswatters or using boric acid for ants and roaches.
4. Initiate flexible work hours that allow the employee to leave during potential chemical exposures (e.g., painting) and/or to work during off-hours to avoid photocopy and other office fumes, or rush hour traffic.
5. Provide notification of impending pesticiding, painting, and construction.
6. Use nontoxic fume-absorbing substances, fans, or windows instead of chemical "air freshener" in bathrooms.
7. Relocate the employee to a safer part of the building.
8. Provide an air cleaner for the employee's work area.
9. Vent the photocopy machine to outside the building.
10. Use unscented less toxic cleaners as replacements for ammonia, solvent, phenol, or chlorine-based solutions.
11. Delegate errands to toxic areas, such as photocopying and other small nonessential tasks, to an employee who does not have chemical sensitivities.
12. Minimize the amount of time the employee spends under fluorescent lights or in the vicinity of transformers, electric cables, computers, or other electromagnetic field sources that trigger symptoms.

When The Person With MCS Can No Longer Work

Sadly, many persons with MCS fail in their attempt to maintain employment. Three-quarters of people in my life impact study had lost or had to quit their jobs because of their MCS. In fact only 7% were working in conditions that they considered safe for their health at the time of the study. People with electrical sensitivities, in particular, may be unable to alter a workplace enough for their safety given the widespread presence of EMF-emitting technology.

Many people with MCS have become so sensitive to chemicals that they can no longer work even with accommodations, or they may be unable to work in their chosen field because of the toxic nature of the work. Hairdressers, chemists, painters, and exterminators who develop MCS probably cannot continue or resume their careers, even with accommodations.

Helping the person with MCS with alternative employment or compensation is another big challenge for advocates. Some people are able to seek alternative employment in a safe workplace environment or make some income from a small home-based business, but many are unable to work at all. I f work is lost, the personal consequences are often severe. Loss of work in combination with escalating housing and medical costs easily leads to financial ruin. As a result of their MCS, people in my life impact study reported that they had lost almost $18,000 per year of their incomes. They now earned on average about $12,000, much of which was disability compensation. They had also lost their health insurance and retirement benefits.

The loss of work deprives the person of their former role and contact with co-workers, and forces an isolation that can lead to depression and despair. One nurse in my study mourned that her disability had robbed her of her opportunity to help others even though she had the training and the empathy to do so. If the workplace extrudes rather than accommodates the worker, the person disappears into a hidden group of people with invisible disabilities and business goes on as usual.

GETTING COMPENSATION FOR MCS

As an independent living advocate, you are in an excellent position to understand private and public disability benefits. But unfortunately, obtaining benefits for MCS is extremely difficult. Even if an employee has private disability insurance, conditions resembling MCS may be excluded. In addition, some companies discriminate between physical and mental conditions, limiting benefits for mental conditions to two years duration. So even if the employee does succeed in obtaining private disability compensation, if the company can get the employee's condition labeled as a mental one (either initially or after a period of compensation), then benefits can be of limited duration. An additional obstacle to obtaining benefits is private insurers' use of "expert" witnesses who they hire to testify for employers against people applying for MCS compensation.

Social Security Disability Benefits are also difficult to obtain. The person with MCS is usually faced with the task of convincing people who know nothing about MCS that they are unable to engage in gainful employment anywhere. Examiners have a difficult time understanding why the person cannot "perform other work in the national economy." People must be able to demonstrate or explain that they a) become debilitated by common chemical exposures, and b) have no control over these exposures that depend upon other people's behavior. People in my studies reported using creative strategies to convince examiners and judges of their problem such as videotaping themselves during a reaction or having friends testify as to their health and behavior both before and after developing MCS. Since examiners must use "all relevant medical and non-medical evidence," these strategies are acceptable. SSA's listing of impairments includes over 150 categories presumed to meet the severity test for acquiring benefits. MCS is not on it and, being unlisted, must be the "medical equivalent" of one of the listings. Criteria for mental impairments are more subjective and focus more on subjective evaluation of the person's functional limitations than those for physical impairments, which are supposed to be documented more by medical fact. Although there are conditions that must be assessed by functional limitation, e.g., musculoskeletal conditions, awards for these conditions are infrequent. MCS falls into the category of impairment that is difficult to document by medical fact, and therefore the person MUST prove functional limitation.

Half of the people in my initial study had applied for disability benefits. Of the 151 who applied, 104 described the process to us (75 women and 29 men). Of these 104 people, 51 had filed once, 22 twice, 28 three or more times. Fifty-nine participants had been awarded disability benefits, 13 were denied at the time of the study, cases for 31 individuals were still pending, and one response was unclear. Of the 59 people who received disability income, 29 were awarded benefits on the first petition. It cost people an average of $2,060 to go through the process, took an average of twenty-three months to complete, and resulted in an average award of $12,702. Because MCS is so poorly received, people used a number of labels in their application process: MCS-related labels such as multiple chemical sensitivity, environmental illness, toxic encephalopathy, and sick building syndrome were used by 48 people; other diagnoses by 23 (even though MCS was their primary health problem); and a combination of MCS and other labels by 29 applicants. Other labels combined with MCS included psychiatric problems (n=11), respiratory illness (n=10), musculoskeletal dysfunction (n=7), chronic fatigue immunodeficiency syndrome (CFIDS) (n=5), immune disorders (n=4), circulatory problems (n=3), gastrointestinal disorders (n=3), and others (n=17). Medical evidence used for documentation included blood work, brain scans, allergy tests, and neuropsychological examinations, among others.

The 60 people who used attorneys had to search diligently for someone educated about MCS. One woman approached over twenty lawyers, none of whom would accept her case. People were granted disability under the following labels:

* Includes labels such as multiple chemical sensitivity, environmental illness, toxic encephalopathy, sick building syndrome, sensitivity to fumes, multiple allergies, chemical allergy, multiple hypersensitivities, etc.

** Psychiatric labels include: depression (n=7), posttraumatic stress disorder (n=4), conversion disorder (n=2), schizophrenia (n=2), somatoform disorder (n=2), anxiety disorder (n=2), affective disorder (n=2), schizoid personality disorder (n=1), dementia (n=1), "emotional" (n = 1), global assessment of functioning scale = 50 (n=1), and unspecified psychiatric (n=2).

Psychiatric labels can be inaccurately and inappropriately assigned for a person even if their personal physician supplies only a physically based diagnosis. For example, 27 people in my study were granted disability benefits for psychiatric reasons even though only seventeen people had filed their petition with a psychiatric diagnosis. Even if none of the applicant's personal health providers believe the applicant has a psychiatric diagnosis, an SSA-chosen expert's psychiatric designation can be used for disability eligibility. For example, one woman filed for disability for chronic fatigue syndrome (CFS) and was granted disability for paranoid schizophrenia. Because of financial desperation, some people reluctantly allowed the use of psychiatric diagnoses in order to receive benefits necessary for them to survive.

Physician documentation may be the most crucial component of the application process for those with MCS. The documentation needs to be from physicians who are knowledgeable about and supportive of chemical sensitivity. Physician statements should include information about the condition in general, and contain detailed information that documents that the person in question meets the requirements under Social Security of being unable to engage in gainful employment. The examiners and judges are supposed to give greater weight to the opinions of the person's own physician, to physicians with long relationships with the person, and to physicians with special training in the area in question rather than to opinions of consultants who have reviewed the person's medical records or only seen the person once. However, having actually seen the person also gives more weight to a physician's testimony. Therefore agreeing to see a hostile independent medical examiner (IME) hired by industry may be a poor decision on the part of the applicant because this will give more to the IME's testimony.

HOW TO HELP

• Maintain a list of physicians knowledgeable about MCS who will help persons in need of disability documentation for accommodation requests or for disability compensation applications.
• Help people to think critically about remunerative work they may be able to perform.
• Offer to provide educational resources and training about MCS so workplaces can make better decisions.
• Consider providing employment to someone with MCS in order to have an expert resource for persons requesting advocacy.
• Follow court related decisions about workplace accommodations for MCS in order to be aware of what courts are interpreting as "reasonable accommodation."
• Help the person develop stress-management mechanisms to help then through the long and difficult period of acquiring disability compensation.

For more in-depth suggestions on making workplace accommodations, go to the Job Accommodation Network's Web site at http://www.jan.wvu.edu/media/MCS.html.

Have the following workbook on hand to help people brainstorm about strategies:

Multiple Chemical Sensitivities at Work: A Training Workbook for Working People. 1993. New York: The Labor Institute. Available from The APEX Press, Publications Office, P.O. Box 337, Croton-On-Hudson, NY 10520. Also available is a half-hour videotape "MCS: An Emerging Occupational Hazard." Both are also available from ECHO, P.O. Box 0119, Hebron, CT 06248-1119. Phone/Fax: 860-228-2693.

Acknowledgements

Amazon.com Recommended Books:

	Chemical Exposures: Low Levels and High Stakes, 2nd Edition   Buy from Amazon.com Buy from Amazon.co.uk
	Defining Multiple Chemical Sensitivity   Buy from Amazon.com Buy from Amazon.co.uk
	Multiple Chemical Sensitivity: A Survival Guide   Buy from Amazon.com Buy from Amazon.co.uk
	Detoxify or Die   Buy From Amazon.com Buy From Amazon.co.uk