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So again, good morning and afternoon everyone. Welcome to the ADA audio conference series. My name is Marisa DeMaya. I'm with the Southwest ADA Center and I will be serving as the moderator for today's session. This program is brought to you by the ADA national network. It offers monthly and covers a variety of topics related to the ADA. Today's session is titled accommodating persons with environmental sensitivities and we are privileged to be joined by our presenters, Mary Lamielle and Darrell Lynn Jones, and I will introduce them both shortly.
Again individuals joining us today are using a variety of mediums, including the telephone, mobile devices and via our webinar platform. A written transcript of this session will be created edited and posted to the www.ada-audio.org website along with a digital recording of the session within about ten business days following the conclusion of our program. Our presenters will provide us with some valuable information today and at the conclusion of the presentation there will be an opportunity for everyone to ask questions.
Again those on the telephone will be able to submit questions to the presenter via instructions provided by the operator. Individuals participating via the webinar platform may submit your questions via the chat area. All questions will be conveyed to the presenters; depending on the number of the questions we may not be able to address all them today but we encourage you to follow up with your questions with your regional ADA center. And you can do that by calling 1-800-949-4232. So, again I am going to begin today's session by introducing our presenters.
Mary Lamielle is the founder and executive director of national center for environmental -- excuse me environmental health strategies in Voorhees, New Jersey.
Darrell Lynn Jones is the Project Director for the IL Net and new community.
No audio. Standing by
Does everyone hear us now? Can you hear me now? Mary, can go ahead and do a sound check?
MARY LAMIELLE
Mary Lamielle.
I am on page 2 and I am going to give a brief overview of the presentation. I will highlight the unique medical and disability access needs faced by people with chemical and electrical sensitivities or intolerances, discuss healthy indoor environmental quality (IEQ), provide a brief history of chemical sensitivities and review policies, programs and practices; and talk about eliminating or reducing environmental access barriers, accommodating people with chemical and electrical sensitivities and examples of harassment and discrimination.
When we talk about people disabled with chemical sensitivities we are tlalking about a two stage illness: initiation and triggering. Initiation can either be by acute exposure to pesticides and toxic spills, moving in to a new home or office, or chronic low level exposures from being in a sick building, toxic cleaning products. For example: the affected individual will over time start reacting to more and more different substances and products at lower and lower exposure levels. Reactions are triggered by low level every day chemical and environmental exposures such as pesticides, bug sprays, treated wood products, solvents, then we're dealing with paints, glues, gasolines, nail polish, the new carpet, formaldehyde posteursizers, cleaning agents, bleach, ammonia, disinfectants such as Lysol and air fresheners. Combustion-related products, drugs, medical devices, such as over the counter and prescription medications, anesthetics, implants, and chemotherapy. Many individuals also react to preservatives to natural substances and electromagnetic fields, and all these areas' individual tolerances will vary from person to person.
When we are talking about who is affected by chemical sensitivities or chemical intolerances, we are talking about a range of people. About a third of U.S. population is affected by every day exposures: Tobacco smoke, pesticides perfumes of which around 16 percent are unusually sensitive and up to 6 percent chronically ill or disabled. Studies done in California or New Mexico behavioral risk factors surveillance surveys, which is CVC funding into a state on public health issues, asked the question "Do you consider yourself allergic or unusually sensitive to every day chemicals, like those in household cleaning supplies, paint, perfumes, soaps, sprays, or things like that." The California study done in 1995 by scientists, Croitzer and Noitra, published in The American Journal of Epidemiology, found that 60 percent of the Californians surveyed were allergic or unusually sensitive to every day chemicals and 6.3 percent with a diagnosis of multiple chemical sensitivity or environmental illness, the terms used in that study. 4 percent unusual sensitivity to a lot of chemicals. Croitzer was surprised by the numbers at the time, but they found that these were consistent across the state, across all demographics. In New Mexico in 1997, their findings were that 16 percent were allergic or unusually sensitive to every day chemicals and 2 percent with a diagnosis of multiple chemical sensitivity or environmental illness. Next, two national surveys done by Stan Caress in 2002 and 2005, came up with 11.1 and 11.6 percent respectively, reporting hyper sensitivity to common chemical products. Whereas in the most recent study done in 2012 by Dr. Claudia Miller and her colleagues, found that 20.3 percent of primary care patience came in to two clinics in San Antonio Texas met the criteria for chemical intolerance based on completion of the QEESI survey. Their finding was that chemical intolerance occurs in one in five primary care patients but rarely diagnosed by busy practitioners. Next, electrical sensitivity or electro-magnetic sensitivities or intolerances, people with electrical sensitivities react to electromagnetic fields from electrical devices and frequencies. Reactions are triggered by electrical appliances and devices by microwaves, transformers, high tension wires, computers cordless phones, cell phones and smart phones, cell towers, Wi-Fi, fluorescent lights and again individual tolerances may vary. A study done in 2002 in California found that 3 percent of the population reported sensitivities to electromagnetic fields. A most recent European study in April this year, found that 3 to 5 percent of the population reported electrical sensitivities.
Next, this is a chart developed by Dr. Claudia Miller that I think is helpful for helping folks understand the elusive nature of identifying this condition. She uses the term toxic induced loss of tolerance for people with a chemical sensitivity or intolerance. So you have the MD being the Titanic coming along only seeing the top of that iceberg. So, only seeing, the doctor only sees the symptoms and makes a diagnosis. The symptoms or the reactions that someone is experiencing can vary on a day-to-day basis, on an hourly basis depending upon what they're exposed to. So people have a kaleidoscope of overlapping symptoms. Which it makes very difficult to tease out exposure response.
What the doctor does not see is the iceberg under the water that is that, we are dealing with a susceptible person who has that initiating exposure, loses their tolerance and then is reacting to all types of things on a day to day basis and the other confounding factor is masking in that if you don't eliminate all exposures you can't get to baseline and then you see that exposure response involved in the condition.
Next, the toxic induced loss of tolerance, again Dr. Claudia Miller's name for this disease process. This is the chart she has of the many conditions, the steps of conditions for which intolerances to chemical is a Hallmark. I think this is really revealing for understanding chemical sensitivities or chemical intolerances because everything from migraines to seizure, autism, asthma all these various conditions are conditions that someone who reports being disabled by a chemical sensitivity or chemical intolerances can experience. And it is relevant in a disability framework because it is not the absence of a ramp that keeps people with these disabilities from having access but it is the environmental barriers.
This is a graphic of an environmental medical unit. So the drawing of an EMU, or environmental medical unit which would be a hospital based facility for research, diagnosis and treatment of these conditions. Most relevant in the instance of a chemical event, a chemical spill, terrorist attack, Gulf war veterans, where people experience a significant exposure and then develop illness rapidly, or people with complex illness patterns where doctors are unable to tease out what's going on and address the multiple conditions that a person might experience. Research in this fashion has been recommended by over six different governments in scientific meetings and actually mandated twice by government but never funded. This is actually Dr. Claudia Miller's proposal, but there have been units in other countries most recently Japan, and when we think about why we need EMUs, one factor is that inert environment. It is stainless steel, it is porcelain walls, and everything is as inert as possible. Then you want to remove the patient from all every day exposures, from consumer products, from foods, from various environment exposures to eliminating the background noise, all those different exposures and that would be similar to a person who might think am I having jittery-ness or headaches from caffeine whether in coffee or soda and that person needs to stop those exposures for a number of days and reintroduce to see on a causal relationship. This is similar but in a much larger level, because the affected persons reacting to nearly everything in their everyday environment. So you reintroduce low level exposures to investigate reactions to look for polymorphisms to understand this whole disease process.
Next, this is the tool, research tool that Dr. Claudia Miller developed with funding from ATSDR, which is Agency for Toxic Substance and Disease Registry, at the CDC; at the Quick Environmental Exposure Sensitivity Inventory. And it could be helpful for someone who is recently ill and trying to self-identify that they are indeed having this type of problem and perhaps bring the survey to a physician, trying to sort of elucidate what is going on. The reason for this is the fact that we are in a situation where there is no one test for diagnosing and there is extreme difficulty when patients do become sick in trying to determine what is going on and how do I address this.
Next is the importance of healthy indoor air quality and environmental access barriers. We are going to talk a moment about a study called TEAM, standing for Total Exposure Assessment Methodology, or the TEAM study done in the '80s and actually extended in to the '90s and published the original book in 1989. And it is a study that my guess, everyone on this call knows the finding, even though you may not know that, and that is that common knowledge these days that indoor environments are more toxic for select volatile organic compounds then outdoor air, sometimes five to ten times and others one hundred or a thousand times more toxic. Post World War II we had a dramatic increase in production of organic chemicals and pesticides. Right now 80,000 chemicals have been introduced in to our environment since World War II with hundreds to perhaps a thousand new ones each year, and the big picture is that 80 percent of them have never been tested whether for their toxic or neuro toxic effects. Meanwhile, 90 percent of Americans spend the 90 percent of their day indoors, whether its home, school, office, or vehicle, so you have pretty significant issues going on with regard to exposure. And we are dealing with increased indoor air pollution sources, decreased fresh air intake due to energy savings efforts, and new or reformulated substances and products. I think everyone on this call knows these days that you really can't depend on what you are going to find as far as consumer products on the shelves, or building materials and what they are going to be made of from one day to the next, and let's go to the next.
The basics of IET or Indoor Environment Quality. So healthy indoor and outdoor environment quality are critical to the health and wellbeing of everyone. But they are particularly critical for people impacted by environmental access barriers. Improving indoor environmental quality makes indoor environment healthier for everyone and more accessible for people with chemical and electrical sensitivities. And third, healthy and accessible environments at the most elemental level must be smoke, pesticide, and fragrance free with minimal electromagnetic pollution.
The indoor environmental (IEQ) quality report published in 2006. The report was funded by the U.S. Access Board, a little over a hundred pages. A collaborative project conducted by the National Institute of Building sciences or NIBS, and we had four different advocates involved in the project itself. That would be Ann McCampbell and Susan Malloy and Tony Temple and myself and we worked with indoor air expert with building facility folks and others who were knowledgeable in these fields. The purpose was to make public and commercial buildings more accessible for people with chemical and electromagnetic sensitivities and healthier for everyone. It was a very valuable step at the time. I think it promises - much more needs to be done so sort of bring it to relevance but anybody who has not looked at the report really should do so because I think that they will find it very useful.
Next is federal recognition of chemical sensitivities. The Social Security Administration including these conditions in the program operations manual in February 1988. It's an acknowledgement but no guarantee that you would be awarded Social Security. The civil rights division of the Department of Justice under the Americans with Disabilities Act guidelines issued in 1991 indicated that those severely affected by multiple chemical sensitivity, will satisfy the requirements to be considered disabled under the regulations, again on a case-by-case basis. Department of Education has some decision and then the Department of Housing and Urban Development or HUD issued a legal memorandum in April 1992 that recognized multiple chemical sensitivity or EI environmental illness as "handicapped under the Fair Housing Act" entitling reasonable accommodations on a case-by-case basis.
Next this is a brief history of the U.S. HUD recognition of chemical sensitivity. It was an evolving from a policy issue in October of 1990. Just a policy statement, recognizing the disability and for reasonable accommodations for those disabled under the Fair Housing Act and the Rehab Act of 1973. The following year they issued a draft technical guidance memorandum 91-3 that does discussed MCS a handicapped providing examples of accommodations which were considered reasonable. So removal of carpeting and no pesticide and HUD legal memorandum itself, which recognized MCES EI as physical disability entitling accommodations on a case-by-case basis. It specifically excluded allergies; it essentially said if you are allergic to eggs you know that you can avoid it. Extended coverage to those recognized as disabled by the Social Security Administration and with the Federal Agencies that recognize these conditions.
There is a rather extensive history of policy development in the housing area. Conciliation agrees, Department of Justice consent decent decrees settlement, Pennsylvania Human Relations Commission. However for most of us these policies seem of little benefit. It is a constant challenge and for many a constant crisis. Without accessible housing and accessible health cares it is impossible to function in a work environment. I have worked in the last year off and on with a California woman who needed accommodations at work but meanwhile at the same time she was homeless. She had no stability in work her health or her life. I'm not covering these issues today but there is more information on housing on a lengthier PowerPoint posted at the national ADA network website or folks can contact me for more information.
Next, so we are on to slide 16; some additional federal policies and healthier housing statements. So just a quick view, EPA has promoted integrated pest management going back to the mid '90s. The Food Quality Protection Act of 1996 restricted the use of the pesticide chlorpyrifos which came in 2000. It came as a result of realizing the impact of chlorpyrifos on brain development and IQ for fetuses and children. Bu huge numbers of people who are disabled by chemical exposures became that way as a result of exposure to chlorpyrifos. There is an IPM in multi-family housing maintenance training manual issued in 2009, issued multi-agency by Department of Agriculture, HUD, and CEC that has slides in it that address these disabilities and avoiding pesticide use in public housing. And then there are two HUD public and Indian housing guidance documents. One that for most integrated custom management, another for no smoking policies in public housing.
Next, the EEOC has tracked chemical sensitivity charges and by charges they mean complaints, since 1993. For decade or more they actually tracked complaints with a breakdown of what types of complaints. At that time it was interesting that chemical sensitivity charges for failure to accommodate were nearly double over other charges and it had a lower rate of resolution than other charges. Chemical sensitivity charges have never been litigated. The agency is not aware of specific complaints regarding electrical sensitivities although they did indicate perhaps it has been involved in larger complaints and not specifically identified. If you go to that link you will see the history of charges for all the various disabilities that they track and, for example, for the last concluding year, fiscal year 2013 there were 53 chemical sensitivity charges and 55 resolved but not necessarily from that year, going from previous years, and 11 of those charges got monetary benefits of around $300,000. It is good that we are being tracked but we're a much lower number of charges than other areas and certainly much lower number of resolutions but we are there.
Next, we'll review some suggested workplace policies to eliminate or minimize access barriers. So, no smoking policy indoors and at least 25, if not 50, feet from buildings, having a fragrance free policy, having a policy that eliminates the use of synthetic pesticides, having cleaning maintenance policies that provides for least toxic low-impact products and practices, a notification policy that pre-notifies for construction roofing and other activities like that, vehicle idling policy, and a cell phone, smartphone, WiFi, and other EMF shielding policy some of which might involve literally turning off things that are causing problems for employees and others shielding being built into the structure itself. Some of these recommendations or a number of recommendations come from the IEQ report itself that I referenced earlier.
Next, perfume pollutes-this is button that our organization actually distributed many years ago now, but perfume pollutes is a very relevant topic for people who react to low level chemical and environmental exposures, since the scented products are significant interpollutant. And nearly 3,000 chemicals in makeup fragrances are in all kinds of products including pesticides. If you look at the International Fragrance Association's website, they have a list of those chemicals that are permitted in fragrance. And a single fragrance, for example, a number of years ago when I did an interview with the Detroit Free Press, I indicated that right from Georgia, some perfume had 800 chemicals that made up that perfume. People frequently wear 6 to 12 different scented products. We are really talking about a witch's brew chemical soup type of situation. Additionally perfumes and fragrance products are not regulated, they're exempted from labeling requirements, and they don't need to disclose ingredients' formulations for confidential traits. Some studies have found that 30 percent of Americans report irritation from scented products, 90 percent reverse health effects from air fresheners, another huge problem-a huge exposure-and 10.9 percent reporting irritation from scented laundry products. There is a recent class action lawsuit filed in New Jersey, alleging consumer fraud against Dwight and Church, Arm & Hammer, Proctor & Gamble, Dial, Revlon, and Henkel for selling deodorants labeled unscented which indeed have fragrance chemicals that make up the product.
Next, I'm going to actually review a number of different federal fragrance free policies. The CDC issued an indoor environmental quality policy in June 2009. The fragrance free policy says, "scented or fragrance products are prohibited at all times in all interior space, owned, rented, or leased by CDC." Fragrance is not appropriate for a professional work environment and the use of some products or fragrance may be detrimental to the health of workers with chemical sensitivities, allergies, asthma, chronic headaches, or migraines. The CDC policy is the most comprehensive and Darrell will talk more about the specifics during her presentation.
Next, additional federal fragrance free policies with the census bureau, that's March 2009, it's a more limited policy. Health and Human Services adopted a policy in 2010 that restricted application or fragrance products.that restricted application of fragrance products that were exempted at fitness centers and daycare centers. It had a list of non-permissible fragrance cleaning and maintenance products identical to the CDC Fragrance Free Policy. FEMA has blanket purchase agreements for medical supplies require products to be latex and fragrance free.
Next, this is actually fragrance-free signage that is used at the Census Bureau. "Some consideration of those who are sensitive to chemicals and fragrances this area has been declared a fragrance free zone. Please refrain from wearing perfumes or colognes in this area, also no air fresheners or fragrance admitting devices."
Next, some of the most extensive work in this area has been done been done by the U.S. Access Board, the Architecture and Transportation Barriers Compliance Board, and they have addressed fragrance free policies, they've looked extensively at indoor environment, and specifically about chemical and electrical sensitivities, but with much more work to be done there. In 1999, they held training for the board and staff on fragrances and on indoor air quality. In 2000, they adopted a fragrance free policy for board meetings, and that's the link to it, and at that actually includes when they have a board meeting outside of fair space so in a hotel or something where they have specific protocol. In 2000, they created a committee to examine chemical and electrical sensitivities, and then they contracted with NIBS, with the National Institute of Building Sciences, to study indoor environmental quality and chemical and electrical sensitivities. In 2006, they issued the indoor environmental quality project report which was previously referenced. And then in 2010, they opened a permanent meeting space designated as fragrance free. "All participants must refrain from perfume and cologne, unscented personal care products and scent free cleaning and maintenance products." Announcements in the Federal Register, either issued by a government agency or another agency using the space, must reference the fragrance free policy.
Next, this signage is a large placard that's on an easel in the Access Board meeting room space which is Suite 800 at 1331 F Street, Washington, DC. So the Access Board thanks all meeting participant in advance for refraining from wearing perfumes and other fragrances during all meeting events. This is certainly an important step and you need a fragrance free or an accessible room and accessible rest room. On the other hand, not a guarantee, I have been in that space when people have pulled out Clorox wipes and wiped down tables or potpourri in the rest room or just the electronics, but getting better.
Next slide. These are some observations on an accommodating chemical sensitive employee based on my communications with tens of thousands of individuals affected-trying to stay employed and affected by chemical sensitivities. Early on chemical sensitivity may be a preventable disability. Avoidance of exposure to triggering reactions is a key. Early intervention is critical to avert disability but there is a very narrow time frame in which you can accommodate that person and minimize or halt the progression of the disease process. Many accommodations are modest and expensive and can be accomplished with common sense. The key point is that the affected individual is frequently the best judge of what needs to be done.
Next, suggestions for responding to environmental sensitivities in the workplace. For the employee, they might try to identify exposures to early actions. As appropriate, request product labels and other pertinent information and seek advice and support from advocates, indoor experts, union leaders, coworkers and others. Develop an accommodation request, so perhaps remove air fresheners and generate a fragrance free policy, change cleaning products, unplug some of the electrical products or appliances and discuss that with their physician and request a letter of support and then meet with their supervisor or employer to discuss the accommodation request. For the employer it is important to listen to the employee's request and try to work towards a solution. Being aware that many modifications necessary to accommodate the environmentally sensitive employee makes the workplace healthier for everyone and that failure to accommodate may create or sanction an atmosphere of harassment retaliation and ostracize a disabled employee.
Next. Basic accommodations might include a private office with windows that open, a well ventilated work environment free of pollutants such as tobacco smoke, pesticides, fragrances and fragrance products, use of least toxic allergenic building materials, furnishings and supplies; Shielding from electromagnetic field or again unplugging electrical items or turning off fluorescent light; Prenotification of building events such as painting, remodeling, roofing, and similar activities with provisions for alternative work arrangements; Flexible work time and place, the option to work at home. And education is very key; education of coworkers to avert stigma and harassment.
Next. If I can turn my page. Here we go. Assistive technology for people with chemical electrical sensitivities, might include charcoal mask, industrial respirator, or other personal protection equipment or device. Oxygen with ceramic or stainless steel mask and tygon or stainless steel tubing. Charcoal, HEPA or other electronic air filter or other air filtering device and equipment. A reading box so that the affected individual is blocked from the fumes from printed page. Low emission computers, ADT terminal and other equipment. Restricting cell phones, smartphones, and WiFi; hard wiring phones with Internet access; shielding from electromagnetic fields.
Next. The localized exhaust for computers, printers and other equipment. Separating the person with chemical or electrical sensitivities from exposure to computers and electronic equipment. Turning off fluorescent lighting, incandescent or natural lighting in lieu of fluorescent lighting. Speaker phone or intercom system to participate in meetings to communicate with others and assistant or errand runner who can take care of the task that the affected individual cannot perform due to chemical or electromagnetic exposure.
Next. Incidents of harassment or discrimination. These are incidents that have been related to me through the years by disabled employees. So an employee forbidden to use a charcoal mask or oxygen at work even in a private office. Forbidden to open a window, again, even in a private office. Windows nailed shut to prevent opening. Signs that request a specific accommodation and name the disabled employee. So, "Please refrain from the use of the perfumes for Bonnie."
Next. Intentional or intensified use of perfume or other scented or problematic products so nail polish, hair spray in the workplace. Perfumed poured on the chemically sensitive person's chair, air freshener sprayed on the employee's phone. Use of cell phones, smartphones or microwave ovens in the vicinity of the electrically sensitive employee. An employee "accommodated" by selecting the worst possible or least accessible worksite. So the chemically sensitive employee moved into the janitorial storage office; a teacher with chemical sensitivities moved to a copy center and another moved in to the art room and an electrically sensitive employee moved next to an electrical transformer.
Next. This is a cleaner air signage. This is a pictogram adopted by the California Building Standards Commission, the workers system alloy, promoted by the Access Board in our IEQ report in our Environmental Quality Project Report. And it indicates a space accessible for people with chemical and electrical sensitivities similar to mobility signage.
Next. So these are the parameters that were being designated by that cleaner air space. So a cleaner air room and paths of travel, probably a restroom would be nice. No smoking, fragrance free, pesticide free, least toxic cleaning products. No recent construction or remodeling, cell phones and WiFi turned off. The ability to turn off or unplug computers and other electrical equipment by occupant or staff. The ability to turn off fluorescent lighting and the availability to adjust temperature and air flow or the availability of an operable window. This is recommended for, perhaps, independent living centers where either the building or at least a room and rest room that could be accessible for these populations. Hospital rooms, be nice to actually get health care and medical treatment. And the sign would be removed when the space, rest room are out of compliance.
Next. I want to thank you for your time. I have over 30 years' experience in education policy in these areas. If you go to our website you are not going to see this reflected. So I am going to suggest that people have questions for me or about our work or advocacy or anything you need to know, call me, email me, if you need any additional information, I would be glad to share. Now I would like to go ahead and introduce Darrell Lynn Jones. Go ahead, Darrell.
Darrell, are you with us?
DARRELL LYNN JONES
I am so sorry. I am on mute. I am trying to be responsible. Hi everyone. I am so glad that you all could join us today. My voice is kind of challenged today. So if anything is not clear, feel free to ask for clarification when we get to the Q and A portion.
Let's start with our next slide. After hearing everything that Mary has said if you are feeling overwhelmed about accommodating people with sensitivities, you are not alone. If you think about what the person who deals with this on a personal basis is going through, it can help you, I think, to understand the world that the person walks in. But the really good news is that you don't have to do everything. You just need to start. And I particularly like this quote from Theodore Roosevelt. When he said, "Do what you can, with what you have, where you are."
Next. And we -- you think about all the aspects of managing your organization or your business. The approach that you would take with people who have sensitivities is going to be the same as trying to serve anyone else. You start with one policy at a time. One procedure at a time. And you hold this vision in your mind that you want to be inclusive. And as you put one foot in front of the other you move closer and closer and closer to your goal. There are a few myths and realities that I think are worth discussing. Because all of these things that have been mentioned up to this point kind of rest on some very foundational pieces. Let's go to the next slide.
The first myth that, regardless of how open and progressive some of us might think we are, there is this kind of idea running around that environmental and chemical sensitivities are psychological. Breaking down this myth is important because it creates a barrier for people in trying to get the medical care that they need, the emotional support that's really useful, and helping them deal with the real challenges that they are faced with. And get tangible accommodations that they need.
I would say that it is understandable that at one time it was assumed that it was psychological. This is a rather weird condition. I don't think anybody argues with that. This is an illness that came in to being in the 20th century. We didn't have any history to really help with this. But today there is so much literature on the topic that it is possible for everyone to become educated and to really understand the origins and here's a link for you to go to if you want to spend some more time reading the science of this. This is from a website at the Chemical Sensitivity Foundation.
Next. The second myth that I want to mention because those who live with this condition hear this so often that it is kind of tiring. That it is the odor of something that people with chemical sensitivities react to. This is actually kind of a goofy myth. We hear that the person doesn't like the smell of my perfume and they are just being contrary. Well, let's talk a little bit about the science of this here. It is actually the ingredients in chemicals that are toxic, it's not the smell of something. In order for you to smell something, molecules from that thing has to make it to your nose and then bind to the hair-like cilia and trigger the neuron that causes you to perceive a smell. A perfume, for example, could smell quite pleasant to the individual but once the molecules of that-of the chemicals in that perfume make it in to the bloodstream of the person they can still make the person very sick. And here's a link at the bottom that takes you to an explanation of the science of this.
Next. The third myth that we need to dispel is that if a chemical has passed an inspection as being safe it is not possible for daily low level exposures to harm an individual. The thing is that this belief does not take in to account that almost everyone on the planet today is exposed to far more than just one chemical on a daily basis. As Mary mentioned there has been 80,000 chemicals introduced in to our environment since World War II. There is no safety testing taking place that includes the cumulative impact of all of the chemicals that are in your environment at any point in time.
Next. And a fourth myth is that sensitivity to chemicals is limited to very few people and it is really almost nonexistent. Well, I think that Mary dispelled that myth with the statistics that she shared earlier. The percentage that we most often hear, and there are quite a few studies that are quite reliable done across the country, is that 16 percent of the population is unusually sensitive to chemicals, up to 6 percent of the population is chronically ill and disabled by exposures to chemicals, and about 3 percent report electrical sensitivities. I checked the U.S. Census Bureau's website last night to check the U.S.'s current population and it is 319 million, just under. That means that 51 million people are unusually sensitive and there are about 19 million of us who are chronically ill and disabled.
Next. We take a look at the realities and these are important because if you are a service provider, if you are an employer, if you are anyone who might come in to the world with a person with a degree of sensitivity that is disabling, these are things that will be very helpful for you to understand. Many people with this condition, by the time they get to you, they feel pretty beat up. And that's because medicine has probably not been able to help them. Their friends and loved ones may not believe them or they may not understand what they are going through. And they have these constant faults in their well-being-their-health that is quite traumatic for many people. Their sense of self may really be compromised by the time they find their way to you and they have might be fearful about coming to yet another agency for services or applying for a job if they are able to work.
Next. With these illnesses are used to someone saying you don't look sick. Well, we understand that. But in fact, invisible chronic illness can be as debilitating as physical disabilities that more people are more used to accommodating and it can be really helpful to understand that.
Next. The second reality is that many people with environmental sensitivities are lost everything, declared bankruptcy, going through stretches of time in which they could not work or participate in anything. It may have taken them quite some time to figure out how to make their environment safe or how to ask for accommodations. The person who is newly disabled with these kinds of conditions will be confused, will be afraid, and may be lost in a maze of different kinds of treatments and opinions for some time before they find their way to a place of stability. Your understanding of this can go a long way to helping the person feel validated.
Next. And Mary talked a bit about the ways that body systems can be affected. And it is important for you to understand, as someone who is interested in making accommodations, because the range of effects on a single individual will be so limited to that individual. You see one person with this condition, you have seen one person with this condition. So you need to find out what the specifics are about this person. They may have physical things such as headaches, severe fatigue, muscle pain, cognitive issues like memory loss, attention deficit issues, and confusion. There could be neurological kinds of things, like ticks, nerve pain and seizures. Or psychological irritability and depression.
Next. As you think about how you might accommodate a specific individual the more you understand about that person's needs the more you will be able to figure out exactly what's going to be supported. For example, if a person has cognitive difficulties, they might need similar kinds of accommodations to someone who has a head injury or attention deficit or learning disabilities. The key is to know the individual.
Next, the fourth reality is that if you are a non-profit organization, a small business, or a government entity you may not have the budget to take on all the issues related to environmental sensitivities. Not only can taking all of them can be overwhelming, it can be costly. But you can take on something and you can make a difference. You can make a huge difference for some people. Because many things are low cost or no cost.
Next. I have 15 things in mind that I would like to suggest that you think about. And the first is just kind of a personal kind of thing that you could do and that is to take the person at their word. If they tell you that they react to plastic on the telephone or to the electromagnetic field of their computer accept that at face value. If you get caught up in judgment of things being imaginary or psychological you can't be really helpful to that person. The second is to focus on functional issues and to help that person focus on functional issues. You can use a structured interview with a checklist that helps to keep you focused. Stay focused on the mechanics of the accommodations that are needed.
Next, here is an example of some items on a checklist. What specific limitations is the person is experiencing? And how do those limitations affect the person's daily activities? What specific activities are problematic? And what accommodations would assist in reducing or eliminating these problems? Which ones are not negotiable? You know, which ones are deal breakers? And which ones could be phased in over time as resources allow?
Next. The third thing you can do, as Mary mentioned in some of the policies that she talked about, is to enact a fragrance free policy. And don't get caught up in debates about individual rights to put whatever you want to on your body. If you are in business of serving people, you need to be as accessible as you can be and then advertise your policy liberally so that people know about it. You will attract consumers and customers if they know that you are paying attention to their issues.
Next. Here is an example of an announcement that I especially like that comes from the Arizona Bridge to Independent Living in Phoenix. They put this on materials of all kinds, brochures and flyers and I have seen this tag lines on some of their e-mails. "To accommodate those with allergies, breathing conditions or multiple chemical sensitivities please do not smoke or wear scented products when attending ABIL events or ABIL offices. ABIL events are accessible and in compliance with the ADA guidelines. Upon request we provide sign language interpreters and materials in alternative format." The reason I like this one so much is because they integrated the environmental accommodations with other types of accommodations that people are generally more familiar with. It gives legitimacy to environmental accommodations.
Next. Mary also mentioned this policy fragrance free policy from the CDC. I'm not going to read it to you again but I wanted to draw your attention to the fact that this policy is a part of a 13 page indoor environmental quality policy that they passed in 2009. That's available at the link there at the bottom of your slide.
Next. Some of the other products that are not permissible to use at the CDC are things like incense, candles, fragrance submitting devices off any kind, potpourri and so forth.
Next. And this is a copy of signage that the CDC uses. In the same vain that they tell people through proper hand washing and we see those signs just about everywhere, they include a statement, "Scented products release chemicals that may trigger serious health reactions in people with asthma, migraines and allergies." I think the CDC's total policy is an excellent one that you might use as a template to develop a policy for your own organization.
Next. The fourth thing you can do is include in your policy that the least toxic cleaning products will be used in your office and that Potpourri and air fresheners and those other kinds of scented products will not be used. Be conservative about renovations. Nobody is telling you don't do renovations but use the least toxic paint and building products. These are now readily available. You just need to ask for them. Provide advanced notice of chemical usage such as carpet shampooing, floor waxing painting through e-mail or signage. Send out an e-mail to your distribution list or put signs outside your entrance doors that such activities are taking place. Then individuals get to choose whether to enter or come back later.
Next. Use only integrated pest management practices that will be safe for all your staff, visitors and customers. At the end of the presentation, I have a resource page that has a link where you can get more information about integrated pest management. When possible, have cleaning done when the building is not occupied to reduce exposure. If your space and resources allow, create a safe room where individuals with environmental sensitivities are using-individuals with environmental sensitivities to advise you on the design and construction of the room. And this last one on this slide isn't always possible but if you can provide an office or work space that has a working window. It seems like such a simple thing but it can have a huge impact.
Next. If consumers or customers are too ill to come to your office, find ways of providing services that are safe, over the phone, through e-mail, lots of people are in to Skype these days. If your organization provides housing location assistance, when you survey landlords, include questions about environmental factors such as any renovations that the landlord intends or how he or she uses pesticides, any neighborhood features such as industrial emissions. Every community has different factors.
Next. Here is a quick note about integrated housing because housing is such a huge issue for all people with disabilities, particularly if accessible features and affordability are factors. Not every person who has a disability is in search of integrated housing. People with environmental sensitivities sometimes need segregated housing. So if someone asks you for help in locating that, don't take it as a personal front to your disability rights philosophy. Every person is an individual and it is so key to keep that in mind.
Next slide. Provide the option of an employee with sensitivities working at home if a job can be done at a distance. And if that's not feasible work with them to create a safe zone within the office that will make their continued employment manageable. Recognize that some people may need to rest during the course of a day. So if you can provide a cot or other place where they can lie down, that can help tremendously.
Next. Here is an example of an accommodation from the Job Accommodation Network that many of you are probably familiar with. There was a clerical employee having difficulty breathing due to coworker fragrances and new carpet fumes. The coworkers were asked to eliminate the use of fragrances and the time the employee spent in the office was reduced by allowing her to communicate with coworkers by telephone, e-mail and fax. They also suggested that the carpet be detoxified or removed and replaced with tile or wood.
Next. The last thing that I put on my list, again is another very personal thing that I think each person who is interested in being supportive and accommodating can do, and that's just really educate yourself about the key issues. So that you can provide the kind of support and efficacy that the person really wants and needs. The three tough issues that you will likely encounter and this is from my own experience is that the first the individual has constant challenges to their identity. Because typically what happens is that the person's world continues to shrink as more and more sensitivities are added to. What they are experiencing for you to understand this to be compassionate and nonjudgmental can be lifesaving. Safe housing is the second issue that you are likely to most hear about and is extremely hard to come by. So everything that you can do in your community to promote nontoxic approaches to construction, to lessening industrial emissions, to providing a market of apartments and other kinds of housing that people can actually choose from could help tremendously with this population.
Next. The third thing that you can do is brainstorm solutions with the person if they want you to do that. Because often a person is severely fatigued or they might be dealing with cognitive problems. So your assistance in sorting through the resources and accommodations could be very welcome to that person.
Next. And here's that list that I mentioned of resources that I particularly like including the Job Accommodation Network that many of you are probably familiar with already. Several that are related to chemical sensitivities. And then the material on integrated pest management. The final slide is my contact information. And feel free to contact me if you have any follow-up questions. Thank you. Marisa?
MARISA DEMAYA
Okay. Well, thank you so much Darrell and Mary. At this time I just want to remind folks that you can type your questions there in to that chat area. I do have a couple. However I want to ask the operator if there are any questions on the line at this time.
OPERATOR
Ladies and gentlemen if do you have a question at this time please press the star and 1 key on your touch tone telephone. If your question has been answered and you want to remove yourself from the queue please press the pound key.
MARISA DEMAYA
Okay. We will go ahead and start with a couple of questions that we have gotten here. First question is: I think this was -- this can be either of you, do you have more information -- oh, okay I think this is directed towards Mary. You previously mentioned a class action lawsuit. Do you have more information that you could give us? Where could we find information regarding that lawsuit that you mentioned?
MARY LAMIELLE
Yes, I have to see if I have it. I actually did have it attached and then I removed it from my talk. I am going to look as I am speaking. But if not, anyone who is interested can e-mail me. I actually have a copy of the lawsuit. And I can certainly send the citation. I'm just not sure I can quickly find it as we're talking. Give me one minute just to see. Again, I have lots of papers here and I did have it, but I am not sure I will come up with it. Maybe leave that as a suggestion right now and if I do find it as we're talking. But it is filed by an attorney in Philadelphia, filed in New Jersey. Okay hold on. The attorney is Mark L. Rhoads, again filed in New Jersey and now I am looking for the title. I don't have that right off. Anyone who is interested could actually e-mail me and I would send that.
MARISA DEMAYA
Okay. We will post Mary's e-mail address in that chat area and it is also on the slides. Our next question is in your experience have you seen many correlations between our use slash dependence on oil and gas products and how this affects people?
MARY LAMIELLE
This is Mary and I think the primary factor there is that chemicals as a whole group are primary sort of a primary class of things that people who develop sensitivities react to. So it is a huge issue. But that does not mean on the other hand, for people who become extremely disabled and use the term environmental illness, just react to all types of things; many people will start reacting to natural substances as well as Petro chemicals. But it is a sort almost like, you know, the primary factor in this whole area.
MARISA DEMAYA
Okay. Darrell, do you have anything to add?
DARRELL LYNN JONES
Nope. I think she summed it up.
MARISA DEMAYA
Okay. Do you have any-our next question do you have any suggestions, short or of a full-fledged fragrance free policy, for effectively influencing the behavior of coworkers who do insist on their right to wear fragrances? Does raising awareness accomplish anything?
MARY LAMIELLE
This is Mary and I am going to say that when the-what was shared with me and my recollection of it back in 1999 when they had their first training for their board and staff on indoor air quality and fragrances, it was related back to me that many people again in that agency dealing with people who are disabled related the fact that the stigmas that we hear, that they didn't believe people can be sick from fragrances. They just thought it was psychological or sort of a put on. And so those stigmas and thoughts are out there. And I think their education is really key piece. Hearing some people who are affected, hearing the scientific data that Darrell was relating, I think those are important pieces and that helps. Plus, a supportive management-if management, if supervisors, if those people in charge put forward the approach that says these are regional requests we have to move in this direction I think that has a-that play a big role in the acceptance of other employees.
DARRELL LYNN JONES
I agree. Education is key. And just as you would educate your staff about a wide range of people that you serve, this could be a part of a program that doesn't have to be singled out and make it stigmatized.
MARISA DEMAYA
Okay. Thank you ladies. At this time I will ask the operator again if there are any questions on the line.
Operator
Certainly. Ladies and gentlemen, again, if you do have any questions at this time please press the star and the 1 key on your touch tone telephone.
MARISA DEMAYA
Okay. I think we will move on to our next question. Mary you previously mentioned something known as a charcoal mask in one of your slides. Could you explain a little bit more of what that is and how someone might obtain one?
MARY LAMIELLE
Yes, there are different types of masks, depending on what types of substances they react to. I have seen everything from cotton within cotton as a mask that you would put on your face or have some type of a ties in the back to attach it. And others made of silk with silk and then some with charcoal there are actually different types of activated charcoal and the charcoal is activated so that it filters out chemicals. And I think I'd probably need an e-mail to send a response with sources right now. But they are a product that is out there in the community for people who might need them.
MARISA DEMAYA
Okay. Thank you. Okay. Question for the panel, as workplaces start to go much more mobile with a move to smaller workplaces, for example, hot desks, bring your own device to work, and a push for mobile phones and tablets as work devices, what can be done in these environments to best accommodate employees who have an electrical sensitivity?
DARRELL LYNN JONES
This is Darrell. I am not an expert on electrical sensitivities and the new mobile devices are creating some new levels of issues. Historically with regular kinds of computers there were shielding boxes that could be used that computers could be put inside of and a person's hands would go through a slot to work the keyboard. I am not aware of what is being done around the mobile phones and tablets and that sort of thing. Mary, have you heard of what's happening in that area?
MARY LAMIELLE
I think in one respect, it is going to further not just-it is going to further isolate a significant population who are extremely, extremely debilitated by very low levels of exposure to electromagnetic fields. I think you are going to have that factor and you are going to have, I think, more people beginning to react. Actually, I had a meeting with several folks, it was a-for FEMA who expressed to me that when they are sort of out in the hinter lands, because many of them get sent to different places that are rebuilt as part of their responsibility and they expressed to me the fact that when they return back, they have a feeling that they have become much more aware of what they assumed was electromagnetic sensations around them. So I think it is going to create more problems with workplaces than we already have and, you know, you will see information on like the-that you need to hard wire, that you need to put up, you know, walls to sort of try to lessen electromagnetic fields but with these open space plans and so much electronics I am not sure how you are going to curtail that sufficiently even for people who are moderately affected.
DARRELL LYNN JONES
I think that if people were to at least have access to headphones so they are not holding devices up next to their head, or actually have it next to their body, this may help some people.
MARISA DEMAYA
Okay. Next question is, I think we have time for a couple more. I find many fragrance policies do not specifically call out laundry fragrances. They seem to be the 900 pound gorilla in the room. Nobody wants to acknowledge. And if this is not addressed, accommodations fails for many. Are there any strategies that you can think of, you know, what work strategies can you think of to get laundry very specifically, excuse me, called out in a fragrance policy?
MARY LAMIELLE
You do see, some meeting policies, sometimes it has to do with people who are meeting who are sensitive to chemicals specifically calling that out. I think they are presumed to be included like the CDC policy, where it says the no scented personal care products, I think that's presumed to be part of that. But I think there's another factor there. The lawsuit that I had mentioned and, you know, the fact that you have companies reporting to have fragrance free products on the market but those products indeed having fragrance I think it is another compounding factor in this whole area. But you know, I don't see anything wrong, though, where maybe we do need to start a trend where we are specifically calling that out but I do think that when it says no perfumes, no fragrances and no scented personal care products, that it sort of presumes to be part of that. But there is a-that whole trend of, you know, products where, put this in your washer and your scent is going to last 30 days. I mean it is really get sort of getting hyperbole effect and it is difficult to deal with.
DARRELL LYNN JONES
It is difficult to deal with. And I think it goes back to what we were talking about earlier, that education is such a fundamental part of what has to take place because this is a strange situation. This is a strange illness. And when you start talking to people about their personal rights to put on their body what they want, it creates an atmosphere of hurt feelings and hostilities and all kinds of emotional factors start coming up when you move in to that kind of territory. So it needs to be approached, I believe, as factually based and as personally as can be done when you are trying to kind of mediate between coworkers and other people who come in to close contact.
MARISA DEMAYA
Okay. Thank you ladies. Next question is unscented versus fragrance free. Are these two different things? Can you clarify?
MARY LAMIELLE
My-yeah, this is Mary and my understanding has always been that fragrance free meant that there were no scent chemicals. So those nearly 3,000 chemicals that make up fragrances in the product whereas unscented might have masking agents or other things overriding those fragrance chemicals. So that, for example, if you are buying a magic botanicals makes a line of shampoos and so forth and they clearly say fragrance free and if you look at the bottle there are no chemicals listed -- there is no fragrance listed as a matter of the ingredient list.
MARISA DEMAYA
All right. I think -
MARY LAMIELLE
I have the lawsuit finally.
MARISA DEMAYA
Oh, you do great.
MARY LAMIELLE
Give me one second here. Melissa Sogarty versus Church and Dwight, case No. 3:14 and I just lost it; that's the cite. Hang on. Maybe not. That's the -- Sogarty versus Dwight-Church and Dwight, make Arm and Hammer. And without another minute or two I can't get back to it. That's the primary parties.
MARISA DEMAYA
Okay. What we can also do if you wouldn't mind e-mailing me that and we can send that info along and have it posted with the archive file.
MARY LAMIELLE
Okay.
MARISA DEMAYA
I think we are just about out of time. So I'm going to go ahead and close it up-do our closing here. But I want to let you know-I know there are some questions we did not get to. Both of our presenters have provided their information here today. So if you would like to e-mail them your questions, you know, if there is some in particular that we didn't get to your question, I do apologize. I know we had a bunch of them. You can also call the center that serves you at 1-800-949-4232, if you do have questions as well. But again, I just want to thank Mary Lamielle and Darrell Jones again for your wonderful presentation and your information today. This concludes today's ADA audio conference program. We realize many of you still have questions for them and apologize if we didn't get a chance to get to your question. Certainly we have got your-we have got our presenters' contact information there so that you can get in touch with them. Once again, thank you ladies for your presentation and for sharing your time and knowledge with us today. I think we certainly learned a great deal from you in the program. A quick reminder that the digital recording of today's session as well as a written transcript will be available for viewing and download at the www.ada-audio.org website within about ten business days. Please join us again for next month's session that's going to be Accessible Construction Management with Andrea Haenlin-Mott, I hope I pronounced that correctly. For more information on that session or to register again you can visit www.ada-audio.org. Again, for questions regarding the ADA audio conference series, you can direct those to-by calling 877-232-1990 or via e-mail to info@adagreatlakes.org. Again, thank you to our presenters and the staff at the Great Lakes for today. Thanks for joining us everyone, our audience and have a good day. At the conclusion of this session you will receive an e-mail with a link to the online session survey. Please complete the evaluation for today's program as we certainly value your input. Thank you again everyone. You may now close out your session.
OPERATOR
Ladies and gentlemen, this concludes today's conference. Thank you for your participation and have a wonderful day.