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July 24, 2012
My name is Heather Awen, born xx xx xxxx. I have cerebral palsy, chronic CO poisoning syndrome, PTSD, ADHD, MCS and perhaps fibromyalgia and TBI. (I have not figured out a way where I can do the 6-8 hour neuropsychology exam due to muscle weakness holding up my head and MCS, but I am working on solving this problem.) I am unable to cook or clean or shop for myself. I recently became strong enough to bathe myself on a stool with a hand held shower head by getting away from chemicals.
Caledonia Home Health manages my moderate needs Medicaid Choices for Care. A Caledonia Home Health PT and OT both had come to see me. The very smart and kind PT said I needed a higher level of expertise than she could provide and I should go to Northern PT. This is why I wasn’t in the Caledonia program from the start; I was looking into Northern PT so I could have the trigger point treatments she said I needed, but that if I went to Northern PT, I lost all Caledonia Home Health Services. This was before my diagnoses were established and before I was in Fanny Allen Hospital Physical Rehab Program in April, but after I had visited Dartmouth’s Pain Clinic who referred me to the Functional Rehab program to which I did not pass the cardio strength test. While inpatient last April at FAHC physical rehabilitation program I had been told I’d need high needs level of care. (I know now that I cannot go to Northern PT due to their building being so toxic I’d be sicker leaving than going.)
I was found eligible for Choices for Care moderate needs a few months ago when I did not know I had MCS. XXXXX was my case manager. Fanny Allen had told me I am too weak for PT unless in water, but chlorine made me very ill. Having PT at home caused me to be bed ridden for three days. I learned from my doctor Dr XXXX about my MCS due to Chemical Injury from chronic CO Poisoning. I did research about how to stay healthy and safe and called Holly and I was told that Choices for Care would not accommodate MCS needs.
This is illegal.
From XXXX, I was given to her supervisor XXXXX (I hope that is spelled correctly), saying that since I had more a complex case I needed more than her 9 hours for the year of case management. (3 were used for the intake. XXXX however said she would help me find money for the oxygen tank I need when I received the specifications of the type needed, which I will have for her shortly.) I was excited, because my mother was recently diagnosed with two attachment disorders on top of her PTSD, and it is evident she is incapable for caring for me. (As well, she has CO Poisoning and Chemical Injury MCS so she is very weak too.)
XXX sent me forms for high needs Choices for Care (which is hard as I am made sick by the petrochemicals in ink and paper bleached in chlorine). It is obvious to others I need the high level of care, but the issue of how to do it without staff making me very ill and endangering my life was still not addressed. XXXX only said that MCS is impossible to accommodate without even discussing ways that I could be reasonably accommodated. About my MCS, lack of help and my requests for referrals to other agencies, she said “Good luck.” No one has even discussed options or ideas with me.
Many disabled people who have or get MCS later are accommodated because it is the law under the ADA. I am in discussion with them and our legal advocacy groups. To exclude me from the care I need to stay alive because of my disability is illegal according to the ADA. It CAN be done. I know this because it is being done by similar state and federal run programs across the US right now because it is the law. This is discrimination and it is illegal.
My homemaker XXXX is very eager to find ways that I can have help and she came up with the idea of wearing the disposal contamination suit and we wanted to try that, but the off gassing of the suit and the fact that it cannot totally bar chemicals from her personal care and cleaning products choices means it would not work.
Yet there are MANY things that could be tried so as a disabled person I am safe and healthy in spite of also having MCS. We can experiment. I am seeking answers. I am seeking to be a proactive partner with Caledonia Home Health in making sure I get care.
I am requesting that someone work with me to find ways to accommodate my MCS disability so I get the services I am entitled to (and already have in theory but not practice) with moderate Choices for Care and high needs if I am included in that program.
For your convenience, I found the best explanation of what my reasonable accommodation needs for MCS are. I sincerely hope it helps you and opens a dialogue about making it safe for me to actually receive my Choices for Care home making services. It is written by someone else for their visitors but the requirements are the same as with home help. At the end are my reasonable accommodations for people who need to fill out forms. Following is some legal information on this illness.
These reasonable accommodations in no way change the services provided by Choices for Care and are easily done. I now am in moderate needs, but cannot have anything I need done aside from shopping because of MCS disability barring my accessibility to a government funded program for which I qualify and should be receiving, Choices for Care by Medicaid. I do supply my own safe cleaning products and broom, sweeper, non chlorine paper towels etc.
What I want my home health help to do, especially if I am deemed high needs level of care.
1. Her shoes and purse stay outside in a garbage can.
2. She takes off her contaminated clothing, throws them in a garbage can and quickly replaces the lid and puts on a robe.
3. She quickly rinses off her hair and body with Dr Bronners unscented soap.
4. She changes into safe clothing that I wash when she leaves and leaves it here.
This takes about 4 minutes. FOUR MINUTES to keep me safe.
What you need to know before visiting ME, a person who has MCS
(This is mostly written by others with MCS with some of my own adaptations.)
For me, interacting with other people is one of the hardest and most stressful things for me to deal
As if living with such a difficult health situation is not bad enough, it is often equally difficult for me
If you are planning to visit me at my home for a few minutes, hours, or for and extended over night
After all, breathing is a necessity, chemicals and fragrances on one’s body, hair and clothing are
There are not any products that I am not neurologically reactive to. It is just a matter as to how
So, please leave them all at home.
Those "all natural" fragranced products are not safe around me either. While some products are
These are just some basics, but better to ask me than to assume.
Personal hygiene Simple rules-of-thumb:
Things you probably cannot smell affect me and make me pretty sick; after all, it's the chemicals
Cosmetics have exemptions from labeling laws, they are literally allowed to state they are
Soap is like shampoo.
Hand Cream & Lotions
Perfumes, fragrances, colognes, lotions, after shave, hair care products, nail polish and/or
Lotions, hair gel, hair spray... Amazing how much stuff people pour on their body, hair and laundry
Clothing… What to avoid:
If you have any questions about any of this… please ask BEFORE you come to visit.
PS… MCS is NOT an allergy or an "allergic" reaction to "smells" or “perfume-fobia.” It is a serious
What you need to know before visiting a person who has MCS
· sit only on the wood chairs
NO LATEX kitchen and medical GLOVES
DO NOT STOP FOR GAS especially if it means you have to pump it yourself Diesel fumes are some of the worst for me
DOING PAPERWORK with the INK INTOLERANT
If you have paperwork and forms with you, know that the off gassing of recently printed forms (within the last month) will make me very ill due to Ink Intolerance. Also paper absorbs fragrance chemicals. Any newly printed forms are not acceptable in my home. (This is why receipts are not allowed in my home.) Bring only forms that have dried and aired out. Keep them as far from me as possible. I had to donate all my books to a church and charity. It is that serious. I cannot read books without becoming ill.
I become ill when I have skin contact with chlorine bleached paper. (If the paper doesn’t state it is does not use chemicals like chlorine, it does.) I have 100% organic hemp gloves I must wear when I touch paper. Otherwise I will become ill.
So far I have found no pen or pencil that I can tolerate, but I am still trying. For now, I have beeswax crayons from Denmark that are safe. Here are ways for you to accommodate my disability.
· People can make notes when in the room with me using those crayons on their own scrap paper and transfer it later into ink on forms if they like.
· People can be in my bedroom which I cannot enter without a mask due to the fragrance in the closet from the last tenant. Through the door questions can be asked and answered while I sit on the other side and the person in the bedroom can use their writing product of choice.
· People can bring their laptops or tablets or cell phones with them and fill out forms online or in their own programs.
· Someone can call me and fill in the answers I give. (That is how I now do forms.)
When forms are filled out, I put on my gloves and mask and go outside and sign them.
If you want me to read a form, it can be sent in an email or sealed in 2 Ziploc plastic pages. I can provide the bags, but they must be sealed BEFORE being brought into my home. I normally have to wear my gloves to touch plastics.
If I say I am being made ill by something, I expect the person to leave with their belongings asap so I can recover. Once I am ill, my neurological skills including cognition are off so I will not remember what the person says after I have had an exposure. Also my oral communication skills will be off and I will have mood swings. These are the inner symptoms you may not see or understand. I may also collapse, vomit, poop my pants, get a blinding headache, have hives, have swollen glands and tongue, get sores in my mouth, or any number of symptoms.
You may see me quickly putting on my face mask (if not already wearing!) and needing you to leave the room unexpectedly & very quickly. It’s because I need clean air to breathe adequately and “must” avoid exposures (to chemicals)… it’s NOT personal.
It is vitally important that if I say “Get out” no one takes it personally but understands that it is because no level of exposure is safe for me. If I had lung cancer and said this about smoke or a peanut allergy and said this about nuts, I would be respected for taking care of my health. Please respect my disability needs the same way. You won’t have to worry about getting me to the E/R if you simply listen when I say “Get out!”
Prevention is the treatment. Thank you for not taking it personally.
Making Sense of Scents compiled by Julia Kendall
· "Perfumes are increasingly used in an ever wider variety of fields, including perfumes proper, cosmetic products, hygienic products, drugs, detergents and other household products, plastics, industrial greases, oils and solvents, foods, etc. Their composition is usually complex - it involves numerous natural and synthetic sweet-smelling constituents, more than 5,000 ofwhich are known. Perfumes may produce toxic and more often allergic respiratory disorders (asthma), as well as neurological and cutaneous disorders." from the French toxicology journal, Ann Dermatol Vernereol, Vol 113, ISS 1, 1986, P.31-41
· 84% of these ingredients have never been tested for human toxicity, or have been tested only minimally. N. Ashford, Phd and C. Miller, M.D. Chemcial Exposures: Low Levels and High Stakes 1991, p. 61
· In 1986 the National Academy of Sciences targeted fragrances as one of the six categories of chemicals that should be given high priority for neurotoxicity testing. The other groups include insecticides, heavy metals, solvents, food additives and certain air pollutants. The report states that 95% of chemicals used in fragrances are synthetic compounds derived from petroleum. They include benzene derivatives, aldehydes, and many other known toxics and sensitizers - capable of causing cancer, birth defects, central nervous system disorders and allergic reactions. "Neurotoxins: At Home and the Workplace" (Report by the Committee on Science and Technology. U.S. House of Representatives, Sept, 16, 1986) [Report 99-827]
· A few chemicals found in fragrances known to be neurotoxic: hexachlorophene; acetyl-ethyl-tetramethyl-tetralin; zincpyridinethione;2,4,dinitro-3-methyl-6-tert-butylanisole; 1-Butanol; 2-butanol; tert-Butanol; Isobutanol; t-Butyl Toluene. Neurotoxic properties of chemicals found in fragrances have caused testicular atrophy in lab animals as well as myelin disease. The myelin sheath protects the nerves and does not regenerate. (Compiled from TOXLINE database of fragrances industry and medical
· A few chemicals found in fragrances known to cause cancer and birth defects: methylene chloride; toluene; methyl ethyl ketone; methyl isobutyl ketone; tert Butyl; sec Butyl; benzyl chloride. (Compiled by comparing a list of 120 fragrance chemicals from the EPA obtained through the Freedom of Information Act and California's Prop 65 List of Chemicals).
· A few chemicals found in fragrances designated as hazardous waste disposal chemicals: methylene chloride; toluene; meythl ethyl ketone; methyl isobutyl ketone; ethanol; benzal chloride. These chemicals are listed in the EPA's Code 40 of Federal Regulations, Ch 1, Section 261.33.
· 884 toxic substances were identified in a list (partial) of 2,983 chemicals used in the fragrance industry: "Many of these substances are capable of causing cancer, birth defects, central nervous system disorders, breathing and allergic reactions and Multiple Chemical Sensitivities." (National Institute of Occupational Safety and Health report.)
· In a National Institute of Occupational Safety and Health study conducted by Syracuse Research Corporation, Report No. SRC TR 81-521, 1981, benzoin is named as a chemical used in fragrances found to cause enlarged lymph nodes in both male and female mice and enlarged spleens in males. Liver damage is also cited.
· AMICUS journal, Winter '89, Board of Environmental Studies and Toxicology of the National Research Counsel, the research branch of the National Academy of Sciences estimates that "15% of the population experiences hypersensitivity to chemicals found in common household products".
· National Institutes of Health, "Issues and Challenges in Environmental Health," NIH Pub. #87-861..."allergic reactions and hypersensitivity diseases, for instance, are among the most costly of U.S. health problems afflicting at least 35,000,000 Amercians".
· Article "One Woman's Perfume-Another Woman's Poison", in "Let's Live": "The chief reactions we see are those that affect the nervous system - headaches, anxiety, depression. But anything can be affected, even diet and a personal intolerance for different foods. There are two major ways in which cosmetics and their chemical constituents can affect the body. One is through direct contact. Inhalation is the other major route for molecules of an active substance to enter the bloodstream. "There is a route from the nasal passage into the nervous system," says Mandell... "It is the way, for instance, that inhaled cocaine has an effect on the brain."
LEGAL RIGHTS & MCS
U.S. Department of Education
"MCS Is Now Recognized as a Disability. Both the US Department of Housing and Urban Development (HUD) and the Social Security Administration (SSA) have recognized MCS as a disabling condition. People with MCS have won several Workers Compensation cases. A recent human rights lawsuit in Pennsylvania established the right of an affected person to safe living space in subsidized housing. Both the Maryland State Legislature and New Jersey State Department of Health have commissioned studies of MCS. The NJ study provides an excellent overview of medical and legal issues related to MCS."
“In claims alleging disability due to environmental illness, it is often difficult to identify abnormal signs and laboratory findings which can be associated with the alleged symptoms. Therefore, in evaluating claims based on environmental illness, all of the claimant's symptoms, signs, and laboratory findings must be considered to determine if there is a medically determinable impairment and the impact of any impairment on the claimant's ability to work. This evaluation should be made on an individual case-by-case basis to determine if the impairment prevents substantial gainful activity.”
U.S. Department of Health and Human Services, Centers For Disease Control and Prevention
“Fragrance is not appropriate for a professional work environment, and the use of some products with fragrance may be detrimental to the health of workers with chemical sensitivities, allergies, asthma, and chronic headaches/migraines.” (page 9)
The United States Access Board
“There is a growing number of people who suffer more severe reactions to these and many other types of products and chemicals. This condition is known as multiple chemical sensitivities (MCS) and involves people who have developed an acute sensitivity to various chemicals in the environment. People with MCS experience a range of debilitating physical reactions, some even life-threatening, to chemicals used in a variety of products, including fragrances and personal care products, deodorizers and cleaners, pesticides, wall and floor coverings, and building materials. It’s a complex issue with a variety of triggering agents and physical reactions. Different people are affected by different products in different ways. The common factor is that the reaction, whatever the type, is very strong and disabling. Information needs to be developed on exactly what brings about such an acute sensitivity to certain chemicals, how and why this happens, and what can be done about it.”
HUD Policy Statement on Multiple Chemical Sensitivities as a Disability
"Hello, everybody. My name is Bennie Howard. I am the Acting Director of the Office of Disability Policy at the U.S. Department of Housing and Urban Development. This video that you are about to see is designed to raise public awareness about how multiple chemical sensitivity affects the lives of thousands of Americans every day.
“Federal laws–specifically the Fair Housing Act, Section 504 of the Rehabilitation Act, and the Americans with Disabilities Act–prohibit discrimination on the basis of disability. HUD considers multiple chemical sensitivity to be a disability under these laws. Despite this coverage, the Department continues to receive many telephone calls and correspondences from people with multiple chemical sensitivity who report that their landlords refuse to reasonably accommodate their disability. If you, or anyone you know, believes that they have suffered housing discrimination because of their disability, please contact the HUD office nearest you. Fair Housing is not an option. It’s the law."
That is from this Video: http://www.alisonjohnsonmcs.com/multiple-chemical-sensitivity-dvd-intro.htm (The young woman at the end is how I am now.)
U.S. Department of Housing and Urban Development (HUD)
"The General Counsel has accepted the attached memorandums the Department's position on the issue of when Multiple Chemical Sensitivity Disorder (MCS) and Environmental Illness (EI) are "handicaps" within the meaning of subsection 802 (h) of the Fair Housing Act (the "Act"), 42 U.S. C. 3602(h), and the Department's implementing regulation, 24 C.F.R. 100.201 (1991). In sum, MCS and EI can be associated with physical impairments which substantially impair one or more of a person's major life activities. Thus, individuals disabled by MCS and EI can be handicapped within the meaning of the Act. However, while MCS or EI can be handicaps under the Act, ordinary allergies generally would not be."
MCS (Environmental Illness) and Social Security
Environmental Illness is explicitly recognized by Social Security. Their diagnostic code as used in the Social Security Administration's current Program Operational Manual System, or "POMS Manual," for Environmental Illness is DI 24515.064.
Multiple Chemical Sensitivities (MCS) Legal Overview
MCS can leave you helpless, alone, lonely, frightened, and embarrassed. You might have a seizure, or vomit or become too dizzy to walk, pain will impart as you take a breath of the perfume being worn by a person coming around the corner in the next aisle in a grocery store. You finally realize that you can no longer eat the same foods, or dress in the same clothes, or be close to the ones you love. Your life is being threatened by your environment and isolation in a very controlled setting is all that can save you for now. With a heavy heart you close the door to the world you once knew-the world of familiarity, along with the support and the love that was yours. Does this sound familiar?
MCS becomes debilitating for most of the individuals. Although MCS is very controversial both the U.S. Dept. of Housing and Urban Development and the Social Security Administration have recognized MSC as a disability. Many state agencies will help individuals with MCS by providing assistance with homemakers, counselors and many other very important services. Individuals with MCS have won Workers' Compensation cases. A human rights lawsuit in Pennsylvania established the right of an individual with MCS to safe living space in subsidized housing. Both the Maryland State Legislature and New Jersey State Dept. of Health have officially commissioned studies of MCS. The NJ study provides an excellent overview of medical and legal issues related to MCS.
One of the most important law right now for individuals suffering with MCS is The Americans with Disabilities Act (ADA). The ADA prohibits discrimination on the basis of disability in employment, programs and services provided by state and local governments, goods and services provided by private companies, and in commercial facilities.
The ADA was signed into law on July 26, 1990. It contains requirements for new construction, for alterations or renovations to building and facilities, and for improving access to existing facilities of private companies providing goods or services to the public. It also requires that state and local governments provide access to programs offered to the public. The ADA also covers effective communication with people with disabilities, eligibility criteria that may restrict or prevent access, and requires reasonable modifications of policies and practices that may be discriminatory.
The ADA gives the U.S. Dept. of Justice authority to issue regulations for title II and III of the ADA and to provide technical assistance and enforcement. The Department also has the authority to certify that a state or local accessibility code is equivalent to the ADA's requirements for new construction and alterations.
Title III is very important to individuals with MCS. It states that (a) General. A public accommodation shall make reasonable modifications in policies, practices, or procedures, when the modifications are necessary to afford goods, services, facilities, privileges, advantages, or accommodations to individuals with disabilities, unless the public accommodation can demonstrate that making the modifications would fundamentally alter the nature of the goods, services, facilities, privileges, advantages, or accommodations. 36.201 General. (a) Prohibition of discrimination. No individual shall be discriminated against on the basis of disability in the full and equal enjoyment of goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodation by any private entity who owns, leases (or leases to), or operates a place of public accommodation.
If you feel that you were not treated fairly or you were still discriminated against even after you asked for accommodation due to your disability you may decide to file a formal complaint with the Dept. of Justice. The ADA laws will make life easier for you once you understand your rights as a disabled citizen.
At one time or another, almost everyone has experienced an allergic reaction. For most people, these reactions involve sneezing, coughing, runny noses, etc. For some people, however, allergies mean more than routine sniffling and sneezing. To them allergies can literally be life-and-death. Most people are familiar with nut allergies, which can be deadly to those who suffer from them. Recently, though, the law has begun to recognize Multiple Chemical Sensitivity (MCS) as a disability. Those afflicted with MCS have allergic reactions to perfumes, deodorants, laundry detergents and other scented consumer products. Often MCS sufferers have a particularly strong asthmatic reaction to one specific scent, with lesser reactions to other scents. These reactions tend to become progressively more and more severe with each exposure and, at their most severe, they can be life-threatening.
From a legal perspective, recognition of MCS as a disability has been slow in coming. At the beginning of 2009, though, the Americans with Disabilities Amendment Act (ADAA) went into effect. Congress enacted the ADAA largely because too many claims were being dismissed under the original ADA based on courts’ refusal to recognize certain conditions as disabilities. The “Findings and Purpose” section of the ADAA states “lower courts have incorrectly found in individual cases that people with a range of substantially limiting impairments are not people with disabilities.” Based on this language, Congress intended for the ADAA to include more people in the definition of disabled.
Recently, an employee of the City of Detroit with MCS sued her employer for a violation of the ADA based on its failure to limit fragrances in the workplace. She won a monetary settlement, and the employer adapted a policy requesting that employees “refrain from wearing scented products, including but not limited to colognes, after-shave lotions, perfumes, deodorants, body/face lotions, hair sprays or similar products . . .” Also, the Center for Disease Control (CDC) adopted a similar policy to limit the wearing of fragrances in the workplace. Obviously, only so much restriction can be placed on the hygiene items employees wear to work, and enforcement of the policy is more difficult than enforcing a dress code, just as an example. However, these policies indicate a recognition of MCS as a legitimate disability, which require a reasonable accommodation under the ADA.
MEDICAL & LEGAL SOURCES TO HELP YOUR AGENCIES, STAFF & CLIENTS
Multiple Chemical Sensitivity Policy and Resources
MCS Fact Sheet http://mcs-america.org/mcsfactsheet.pdf
Mass. Depart of Public Health http://www.mass.gov/eohhs/docs/dph/environmental/exposure/faq-multiple-chemical-sensitivity.pdf
NM Depart.of Public Health http://www.chemicalsensitivityfoundation.org/pdf/Multiple-Chemical-Sensitivities-Brochure.pdf
Understanding & Accommodating People with Multiple Chemical Sensitivity in Independent Living by Pamela Reed Gibson, Ph.D. James Madison University http://www.ilru.org/html/publications/bookshelf/MCS.html
Ten Things Faculty Can Do When a Student Has an MCS Reaction http://www.mcs-america.org/TenThingsFacultyCanDo%20WhenaStudentHasanMCSReaction.pdf (THIS IS GOOD FOR ADULTS LIKE ME TOO!)
Accommodating Employees with Environmental Sensitivities http://harepublishing.com/Workplace/guide_home.html
Hospitalization for the Chemically Sensitive Patient http://www.ctaz.com/~bhima/hospital.htm
Tips for Anesthetics and Hospitalization for People with Multiple Chemical Sensitivities http://www.immuneweb.org/articles/anesthetics.html
Tips for First Responders http://www.vtcfids.org/images/ishana3responsetips.pdf
Mass. Nurses Association http://www.massnurses.org/health-and-safety/articles/chemical-exposures/p/openItem/1346#model
CDC Indoor Environmental Policy http://depts.washington.edu/exposure/CDC%20Indoor%20Environmental%20Quality%20Policy.pdf