No one expects you to know your rights. No one wants bad media. No one wants to pay for lawyers when they can solve problems. You may not “win” but you will make people aware and maybe the situation will be easier for the next person with MCS. That may even be you years down the line.

Private Landlord

I sent this to a lawyer slumlord I had. The meth addicts he was renting to caused me to be in convulsions due to the drugs in the air and his staff never followed the accomodations he promised me. In the end, as the state police were waiting to do their bust and the landlord just wanted me to stop causing problems, he let me out of my lease and I agreed.

I lived for 6 weeks alone in a parked car in a field with it being 22 degrees at night, a black bear shaking the car. (I call the bear situation my MCS initiation!) Black bears are very much like their cousins the racoons, unlike more aggressive brown grizzlies or polar bears. Just don’t leave them snacks and they go away.

A letter like this may at least get you out of a lease. If you need out, sometimes explaining it is because you have to move to be closer to medical treatment helps.

Dear Mr XXXX,
So in the future there will be no confusion, I have followed the Fair Housing Act (42USC3600-23620) guidelines for making my reasonable disability accommodations. This way we will all be on the same page and have in writing what those requests are, your interactive responses (on paper in the mail, not my door step) and my interactive responses sent to your office.
United States Government regarding the Fair Housing Act (42USC3600-23620), which applies to all housing, public and private, explains that when I make requests for reasonable accommodation under this act, the landlord and their representatives have no legal right to know my disability diagnosis, nor to request my medical records, nor to request that I be examined by another physician (24CFR part 100). (If I were to live in Federally assisted housing such as section 8 or 811 housing, the landlord is prohibited from requesting any money from me for costs of reasonable accommodation (section 504 of the Rehabilitation Act 29USC794).) In private housing such as this, the general legal trend and precedents have been that the owner should pay for reasonable accommodations (note, I am referring to accommodations, not modifications) even when there is some additional cost involved. There is no responsibility of the patient or the patient’s physician to explain why the accommodations are needed or to explain why other accommodations would not work.
There are also some provisions for requesting modifications in tenant behavior. Tenants can be requested to make reasonable accommodations if there is no real cost involved and if only minor inconvenience is involved.
1. I qualify as an individual with a disability as defined by the Civil Rights Laws.
2. I am asking for a reasonable accommodation of your current policies:
• Using toxic cleaning products
• dropping by unannounced
• leaving written notes at my door
• sending workers to enter the apartment without notice
• having smoking upstairs and in the hallway having toxic chemicals (paint, grout, adhesives, etc) used without informing me in advance when and where that will be
• not cleaning up trash left by other tenants, such as used motor oil and glass beer bottles
• not upholding the verbal agreements made that a railing is installed at the side door as you said you would do in March
3.Because of my disability, your current policies have an adverse affect upon my health.
4. Because of my disability, I request the following reasonable accommodations:
• All cleaning in the hallway, upstairs apartment and outside this apartment is done with baking soda, Bon Ami scrub and UNSCENTED Dr Bronners soap or UNSCENTED Seventh Generation products. (No vinegar.)
• No petrochemicals, toxic substances or fragrances of any kind be used or brought into this apartment, including on someone’s person. (Deodorant, shampoo, fabric softener, cigarette smoke, oil, etc)
• That all paints be no VOC.
• No one enters this apartment without 48 hours advance notice and without wearing a full DuPont brand Tyvek disposable decontamination suit, including hair and shoes covered.
• No one tries to talk to me through the door unless it is an emergency of life or death.
• No notes be slipped under or left at the door.
• All communication and notices are to be in writing going to PO Box XXXX or by phone to XXXX, unless it is an emergency that directly concerns my safety and health, then and only then may you call Heather Awen XXXXX.
• 48 hours notice before paint, adhesives, and/or grout are used in the hallway or upstairs or this apartment’s outside, stating exactly what times and what days this will happen
• that no one smokes in the hallway or upstairs or outside this apartment
• that the hand railing be installed outside before September
• no pesticide treatments be used inside or outside the building without informing me one week in advance, allowing me time to provide you with safe alternatives from which you will choose. This includes flea foggers inside and Round Out outside.
• No used cans of motor oil or paint or buckets or brushes or rags used with paint, oil, or other petrochemicals be left by my outside doors and/or in the parking lot, in the upstairs apartment, or the hallway.
• No motorized vehicles be parked in the hallway.
• If there is mold found (possibly due to the flooding you did not inform us happened in this apartment), I request that it be removed safely in a nontoxic way of which I approve within 2 weeks.
• If I ask questions about crimes that have been committed in this building I request full disclosure of what happened and when and by whom if the suspects have been publicly announced (ie are not minors).
• You do not ask me to keep my door unlocked when I am not home so work people can enter without having to see you for the key.
• That I or XXX be here when anyone, of course in a DuPont Tyvek coverall suit, enters this apartment so we can make sure they observe the nontoxic regulations.
• When grouting and painting and cleaning is done in the hallway that Tyvek tarps are used to cover this apartment’s doorway including frame to make a seal, available inexpensively at hard ware stores and online.
• That your employees are aware that the door that says “USE OTHER DOOR” in the hallway is not the door that is to be used, and the side door is the correct door
• That your employees know that they must stand back 4 feet from my door and give me time to put on my mask and gloves if it is imperative that they ask me a question.
That if one of your appliances or house fixtures break due to no fault of mine (like the toilet that would not drain due to hard water build up and left me without any access to a sanitary human waste disposal for days) that any expenses I incur due to dealing with that (such as loss of towels, rolls of my paper towels your employees use) will be deducted from my rent.
5. Please respond to us in writing within 7 days and please halt all work on the upstairs apartment and hallway until these medical safety disability accommodations are met. If you do not respond in writing to the PO Box within 7 days, I will have reason to believe that you have denied my request. Further, I understand that it is illegal for you to deny my request unless it would cause undue financial and administrative burden. This has often been interpreted as something that would cause you to go bankrupt or cause a fundamental change in your program. For example, removing all grass and replacing it with concrete would be a fundamental change in your program. Switching from toxic to non-toxic pest control or other products is not a fundamental change in your program.
A letter from my PCP can be available upon request validating the medical need for these requests if necessary, but it is illegal to ask what the medical conditions are.
Thank you. I look forward to this working for both of us.

Home Health Care

This letter worked much better. I was deemed Nursing Home Level of Care by the state of Vermont, but the agency that was to serve me said MCS was not possible to accomodate. I’d call and my case manager would say “Good luck” and hang up on me. Until I sent this:
July 24, 2012
Hello,
My name is Heather Awen, born xx xx xxxx. I have cerebral palsy, chronic CO poisoning syndrome, 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, 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.
Further down are articles about MCS and ADA and the law so in the future when you have clients/patients suffering with MCS, your staff will be informed and able to help them more easily. I sincerely hope that this research and writing helps you to help your clients and patients with MCS/Environmental Illness/Chemical Injury/Chemical Intolerance now and in the future.
At the very end of this email is my medical record information for Nurse XXXX or whoever does the evaluation. I keep these updated in my computer and email them to appointments, or if they need to be in print, email them to a library to have them printed since I cannot be around my own mail. XXX takes papers to the copy shop for me so I can have multiples of needed information. If you would like to speak with my PCP Dr XXX, psychologist XXX, psychiatrist XXX and/or neurologist XXX that is easily arranged with HIPPA forms.
I hope you appreciate the physical pain that typing this causes me and the emotional pain of not knowing if I will get my daily life needs met and the mental pain of trying to do all this myself.
When Nurse XXX or whoever does the evaluation comes to do my intake for high needs, it is vitally important that for my health that she abides by the safety requirements. One moment of exposure me and two days sick for me, and it also pollutes my one semi-safe place – my living room. If there is exposure in the apartment, I don’t have anywhere to go until the air purifiers can filter it out. I don’t have any friends or family aside from my Mom here and I have been a shut in for 2 years.
Thank you for your time. I understand XXX is away for vacation. I want someone to call me and tell who exactly is my care manager now. Do I call XXX if I have a question? She agreed to be my safety person to call if my mother’s illness places me in danger. Is that still the case?
I look forward to a productive and pleasant future with you and your organization.

Government Funded Housing
I recently received a call saying that a unit is now available for me in senior housing. (Vermont does not has any agency for disability, only the Area Agency of Aging, which is troublesome for disabled people under 65.) Refusing to set my health back, I sent them an email of my ADA needs (list below) with a copy of the entire legal page of this website, stating I will go to the Department of Justice if needed. They counter with having no nonsmoking units, which is illegal as tobacco smoke for someone with MCS is not an allergy but instead a hypersensitivity, which has already been established in PA Human Rights MCS housing case as a disability under HUD. Again what they are doing is illegal. A lot of how I am treated now that I have MCS is illegal. It’s exhausting to keep treading water to stay at barely surviving.
1. No mold.
2. No cross ventilation with other units.
3. No pesticides, no insectides, no herbicides. Ever.
4. Unit far from any smoking (includes incense, BBQ and candles).
5. Unit far from laundry room.
6. Unit far from parking lot.
7. Only cleaning products in unit before resident moves in: Bon Ami, Dr Bronners unscented, baking soda, and lemon juice.
8. Only no-VOC paint used in unit before and when resident lives there.
9. Heat: either Cadet Soft Heat electric baseboards or hot water radiators. No forced air, other oil or propane.
10. No composite, particleboard or other formaldehyde or phenol-emitting “wood product” shelving, kitchen or bathroom cupboards, or for closet doors in unit.
11. Hard surface (moppable) low-VOC (volatile organic compound) flooring in unit and path of travel. NO CARPET AT ALL.
12. Resident has her own mini-washer that connects to a faucet, air purifiers, air conditioner, and water filters.
13. If needed, provide fume and vapor barrier between the unit and neighbors’ units using Dennyfoil or equivalent product.
14. Have wiring outlets adequate for air filters, air conditioning, and medical equipment.
15. Placement of unit: barbecue or outdoor cooking area; protect from cell phone tower; asphalt, traffic or parking lot fumes, combustion or gas fumes laundry exhaust, smokers’ units or gathering place; landscaping with chemical maintenance.
16. Anyone who needs to enter resident’s home wears Dupont 1414 Tyvek coveralls, hood up, and does not use mouth wash, chew gum, apply any hand sanitizer or anything else with alcohol or hand/face lotion, wears no perfume, no cologne, no clothing washed in “fragrance” like fabric softener. If asked to leave they do so immediately to protect resident’s health.

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