Is it right that people who suffer chemical injuries and are disabled as a result are abandoned by the systems designed to help other people?
By Linda Sepp.
In her report to the Ontario Disabilities Support Program in February 2006 when the Special Diet allowance was revised, Dr. Lynn Marshall, the previous director of the Environmental Health Clinic at Sunnybrook & Women’s College Hospital, outlined my health needs as follows:
The most effective means of managing this condition is by avoidance of known triggering chemicals, and minimization of exposure to other “everyday” synthetic environmental chemicals in food, water, air, and consumer products. As with intolerances to foods themselves, it is highly challenging and expensive to minimize such exposures.
She (Ms Sepp) requires food (water, air, and consumer products) containing the lowest possible amounts of synthetic chemicals permanently to help maintain, and hopefully improve, her health status
In a letter regarding my housing needs she wrote:
If Ms. Sepp is exposed to allergens or triggers such as in scented products, laundry and cleaning products, carpeting, particle-board, pesticides, moulds, wireless technologies, etc. she suffers from inability to concentrate, poor memory, profound fatigue and muscle weakness that makes it difficult for her to walk, migraine headaches, and generalized muscle pain.
In order to avoid repeated episodes of such severe symptoms, Ms. Sepp must avoid exposure to her allergens and chemical and electromagnetic triggers.
… she is in urgent need of safe housing, a situation she has been unable to rectify since I saw her in 2005, and that her health has deteriorated considerably since then. In my opinion, from my further communication with her, if Ms. Sepp is unable to live in safe housing to meet her special needs, it is probable she will require ongoing help and assistance with activities of daily living. As it is, she requires assistance when shopping for groceries due to her deteriorating health and the increased use of strong fragrance and air freshener chemicals being used and sold in grocery stores, some of which cannot be effectively removed from areas they have been used.
Ms. Sepp is unable to use a public or shared laundromat due to the chemicals used in regular laundry products, which severely impair her ability to function. She requires her own washing machine at home to avoid these triggering substances.
She also requires whole house water filtration (like that available in the Environmental Health Clinic, Dallas) to filter all the water including for cooking and drinking, as well as for washing clothes and bedding.
…She cannot share air with other people, either by HVAC or through cracks in units or shared hallways and requires a detached two bedroom home in a chemically safe area.
In my view, it is urgent that some mechanism be found to assist Ms. Sepp to locate a suitable home to prevent even more suffering and deterioration in her already extremely compromised health.
Lynn M. Marshall MD FAAEM FRSM MCFP
From a submission to ODSP, Dr Armstrong writes:
…Without capacity to address ES-MCS, and because life for chemically sensitive people is fraught with danger today due to the omnipresence of triggering substances, a significant number of ES-MSC patients are backed into a life style of deterioration, to severe levels of acute illness. At this stage, this illness is truly disabling. It is a very difficult, very demanding and very expensive illness for patients to manage. And at this level, there are many extraordinary challenges faced by sufferers of this disease that differ entirely those faced by people with other disabilities. It is because of these challenges that persons disabled with ES-MSC experience very serious inequities with respect to their ability to survive with ODSP benefits. And there can be high rates of suicide with this illness.
…Because toxic injury – the cause of ES-MCS, (acknowledged by the World Health Organization classification) – affects the central nervous and immunological systems so profoundly, and these in turn affect every aspect of patient health, patients often have multi-organ system problems that create compounded health challenges. Many patients have ME-CFS and Fibromyalgia as well as extreme chemical sensitivity.
…With respect to treatment, we prescribe pharmaceutical drugs for infections, but many of our patients cannot tolerate these because of their chemical composition. So we must find other ways to address these issues – ways that are not covered by either private or public insurance.
…We tell our patients to eat only organic food because we know that eating food grown with pesticides will actively undermine their stabilization and improvement by adding to their overall toxic load, whereas organic food will do a lot to improve their health status. However, we know how much more expensive organic food is than conventionally grown products.
Crucially, we are clear with out patients that if they live in a house or apartment which is not chemically safe for them – which is laden with VOCs or mold – they are unlikely to improve, and are likely to deteriorate even with many the above interventions. If I could write a prescription for a healthy home I would do so, for such a home is the first and most important medical requirement. Many of our patients decide to move from their homes to safer places. Many move many times before finding a safe home and/or spend a great deal of money remediating homes or building new ones.
Equally, most people disabled by ES-MSC have enormous challenges with respect to clothing, which is generally loaded with chemicals (e.g. pesticide residues, dyes, fumigants, sizer, chemically fragranced detergents and very toxic fabric softeners) and laundry (finding a non-toxic cleaner, living through the process of decontaminating new clothing). I have a number of patients who must do all their laundry by hand, and whose clothes are literally in rags because they cannot buy and decontaminate new clothing without becoming even sicker.
In fact, people disabled by ES-MSC who are without the financial support of their families live a life of abject poverty and extraordinary suffering and hardship.
The good news is that when patients are able to act on all these fronts, they can make great progress, even patients who have reached a very severe level of acuity. Many are able to return to moderate levels of acuity or better, and achieve again a productive life and a worthwhile quality of life, if not to complete normality. The bad news is that having reached a severe level of acuity, without a healthy home and many of these essential supports, patients can’t recover and return to a better state of health.
As I understand it, the Ontario Disabilities Support Program has been created to assist those disabled people who are unable to earn a living and have no other financial resources with their basic living needs (food, shelter, clothing) and their medical expenses (pharmaceutical prescriptions, assistive devices). Assistance for these needs is based on certain expectations of cost, and a generally accepted notion of what constitutes a necessary assistive device. Hence an apartment cost is based on costs per community, but not on the need for a chemical-free home. A wheelchair is an accepted assistive device for those with impaired mobility, but an air filtration unit is not accepted as an essential device for those with ES-MCS, even though it may be even more important to survival than a wheelchair. Likewise, a water purification system or a flame-retardant free mattress are medically necessary for those disabled by chemical sensitivity but not acknowledged or subsidized by the program. It should be evident from my discussion above, and the other materials submitted to support Ms. Sepp what other basic needs and health supports ES-MCS patients need and should be entitled to receive.
The examples make the general case. For people with ES-MCS to be treated equitably by the ODSP, the program must find a way to assist them for their very specific, very urgent basic and medical needs. Otherwise they will continue to be treated as second- and third-class recipients of this important program. And they will be living examples of how Ontario and Canada’s commitment to human rights is honoured in the breach rather than the observance.
I cannot stress too strongly as well that making adjustments to the program to provide a level of support to ES-MSC patients equal to that given to people with other disabilities has the added benefit that many of them will be able to return to productive status, and remove themselves from the program. (As well, I would add that it would be helpful both to the disabled and to the program to advocate for the inclusion of the treatments and supports into our health care system, so that they may be borne by the appropriate components of the Ministry of Health and Long Term care as a whole, and not only by ODSP. ) […]
Dr Jennifer Armstrong
Ottawa Environmental Health Clinic
The Ontario Disability Support Program (ODSP) was created to meet the unique needs of people with disabilities. The program provides income support including health and other benefits for people with disabilities in financial need.
The intent of the program is to provide the supports necessary to enable individuals and families to live as independently as possible in the community and lead more productive, dignified lives.
So why am I not receiving the help I need?
I get heart palpitations and chest pain as well as a worsening fatigue every time I wash dishes. I have 2 special shower filters (cost almost $100) just so I can have a short shower without getting a major rash. It still knocks me back and makes my muscles and head ache, and I have to leave the door open to the cold or risk passing out from the fumes, but at least gets the dirt off. I can’t have a bath for the pain, something most people would do just for that, because contact with the chemicals in the water for that long would be too difficult to recover from and I don’t have anyone here to pick up my pieces.
I need a heavy duty whole house water filtration system installed to stop the daily assaults on my health, and to be able to safely wash dishes, clothing and bedding.
I have done absolutely everything that is humanly possible for me to do to rectify this situation. My absolute best, and then some. I have had other people try to do everything they can do.
We can’t get past the government policies that allow people to pollute the air and housing to their wallets content, and the lack of policies to protect people who have been chemically injured and require a life of avoiding petro-chemical substances.
I cannot use any pharmaceuticals or access a hospital. I have no access to medical needs that I require. My medical requirements are for chemical free air, water, food, supplements, clothing, materials, housing and supports.
I cannot afford organic chemical free clothing and now don’t have any safe way of washing them.
I need a heavy duty whole house water filtration system, a portable all metal washing machine, and the purest chemical free clothing available, just to begin to recover and have some semblance of human dignity. Only then will I be able to think about some of the other things that I desperately need, like a safe place to live.
Shouldn’t the province be meeting their stated job of meeting the “needs of people with disabilities” …to lead …”dignified lives”?
If they aren’t doing this, then what?
If there was safe housing, safe water, food and supplements, and safe chemical free clothes to wear, (either covered by OHIP, ODSP or that I could afford to pay for while not being able to work) then I could probably recover well enough to start contributing more to society again, doing any of a number of things I used to do, and helping other people in situations very similar to mine.
Parents need to be educated how to keep this from happening to their kids. Autism and MCS/ES have a lot in common, MS and MCS/ES, ADD, ADHD, alzheimers, cancer, neuro-toxic chemicals… all these things the government cannot afford to pay proper medical care for, can be prevented!!! All the suffering can be stopped!
Demand that your political representatives look after people disabled with environmental injuries, and create strong laws against toxic chemicals and pollutants.
See what some medical doctors have written on my behalf. Even their efforts have so far fallen on deaf ears.
Is it right that people who suffer chemical injuries and are disabled as a result are abandoned by the systems designed to help other people?
Please contact the Premier of Ontario and tell him what you think.
Thank you for this blog. I am preparing to discuss the housing needs Pete and I have as people living with chemical injury. I have used your experiences to inspire me. I am meeting with my environmental m.d. to collaborate and document the validity and necessity for separate and safe medically designated co-housing solutions such as our VardoForTwo.
Everytime I read this, the horror feels like the first time…I re-read the dates and see how long you have been suffering. The words the doctors wrote should have gotten you immediate help. What is going on?
I longed for a validating note from a doctor and saved them and read the sentence over and over…but this is all about what you need, paragraphs…why isn’t help coming.
You know I care linda, wish I could do more. I am praying that someone will pay attention and get you what you need. HUGS
Ps The docotor said she wished she could write a prescription for a healthy house…tragic that anyone would need one…but we all do
Mokihana, thank you! Please keep us posted
Connie, we live in a strange world where obstructing change seems to be more common in bureaucracies than embracing that good things should be possible.
As a problem solver by nature, I do not understand it all, but part of it has definitely got to do with the fact that the economy has become more important than the people and public health, so the money goes to corporations and CEO’s instead of life sustaining activities and policies.
That said, a few good people are now more seriously discussing ways to see if we can make something work.
We still need more help, more people willing to step up and publically say that all this just ain’t right, and that it’s time to do what IS right, because we all need healthier environments and should not be exposed to toxic chemicals in virtually everything that is made and sold these days.
I have successfully taken the next step(s) necessary to collaborate with my environmental physician to get a letter with the subject: Medically Designated Separate Safe Bedroom. Using your blog, and the content of your physician’s letter which I used as a template I drafted a letter that creates in essence “a prescription for a safe home …” In the very near future I will post that letter on our blog.
You write: “As a problem solver by nature, I do not understand it all, …” thing is the solutions are going to require every sort of problem solver to rise to a new level of voice and action.
Thanks again, for your significant contributions and templates for creating real change.
In British Columbia, BC Housing has a program for Persons with Disabilities called ‘Portable Rental Supplement’. Its for people who cant be housed in subsidized apts, townhomes or other tenement style dwelling. So they allow the PWD to rent a ‘cabin in the woods’ and they subsidize the rent substantially. Unfortunately, there are few openings. Ive been on the wait list for over 4 years.
We need advocacy for land/homes/safe zones for safety from the electro-plague.
We definitely need ‘Portable Rental Supplement’s, and advocates, AND medically safe housing! So much suffering and disability could be prevented, and so many lives recovered.
I live in chemically safer housing now, but the outdoors is not safe enough here, there’s regular toxic trespass from neighbors dryer vents, fireplaces, and more… and it’s definitely not good for anyone with EHS because of others’ wi-fi and the stack of s-meters on this building transmitting some kind of microwaves throughout ALL the indoor wiring… and what is worse, those who could do something about it are using delay tactics and passing the buck while we suffer.