TARLOV CYSTS - Canada the misinformed!!!

The rare diagnosis of Tarlov Cyst Disease poses significant challenges in the realm of medical care. Most Canadian Medical Practitioners lack the expertise to accurately diagnose, treat, or manage this condition. As a result, patients often find themselves navigating a healthcare system ill-prepared to address their needs, leaving them feeling lost, scared, and isolated. This lack of medical understanding perpetuates feelings of misinformation and uncertainty among Canadian patients. Through this blog, I aim to share my journey of navigating the Canadian Healthcare system while living with multiple rare disease diagnoses. I have dedicated myself to learning as much as possible about my rare diseases, hoping that my experiences and hard-earned self-education can support and guide others on their own rare disease journey. Together, let's shed light on the challenges those living with rare diseases face and work towards a more compassionate and informed healthcare system.

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Wednesday, December 6, 2023

Canada's Disability Inclusion Action Plan - and its promised effect on the lives of Canadians with Disabilities.

"In the fall of 2020, the Government of Canada announced it would create a Disability Inclusion Action Plan. In Budget 2021, the Government committed $11.9 million over 3 years to undertake consultations to reform eligibility processes for disability programs and services."

We're nearing the end of 2023, and we're still waiting for this outcome to be realized.

In July 2023, Federal MP Carla Dawn Qualtrough was appointed Minister of Disability Inclusion, and as a person born with disabilities, one would assume she'd have a good understanding of the challenges we face, but as a successful lawyer and passionate advocate of sport, does she really understand the challenges faced by persons with disabilities who live in poverty. If she had, many think she would have pushed harder for the Canada Disability Benefit (CDB), which is supposed to be part of the Disability Inclusion Action Plan. However, at this point, we still don't even know if this income, once approved, would be clawed back by the Provinces as income for those who receive disability income support from their Provincial Disability Income Programs. 

As Canada faces a growing housing crisis with no solid solutions, those with disabilities are often first in line to be left homeless. 

In Ontario, where 38% of its population is homeless, a high majority of those counted are people who live and rely on Provincial disability support income. If these funds are clawed back, this will leave many without enough money to afford both a home and food at the same time, let alone the other services and supports they require to live a life as productive or involved members of society.

With the average one bedroom, Ontario apartment rental going for approx. $2200 per month this leaves Ontario Disability Income Support (ODSP) recipients with few housing options because their average monthly income is only $1300. 

In addition to basic living costs, many of the programs and services we rely on, such as the Assistive Devices Program (ADP), offer mobility devices that come with either an extra cost or fewer of the specific needs we require in our mobility and daily living aids. Many of the products we need need to be covered, aren't covered, leaving us to carry these costs as well. 

Other programs and healthcare services, such as physiotherapy, dental care, vision care, and even prescription drugs, also come with additional costs. Since most Provincial programs only cover a small percentage of these products and services, while many of the most proven and successful health recovery modalities and even medications aren't covered at all, leaving most people with disabilities without the devices, treatments, care and support that would make it possible for them to live healthy, stable, and productive lives. 

Stress and worry are a normal part of living for everyone today, but for people with disabilities in Canada, what we carry significantly impacts our quality of life and our longevity. 

The Federal Medically Assistance in Dying (MAiD) program was built to provide Dying with Dignity for those with terminal illnesses, it's been expanded to cover "grievous and irremediable medical conditions" giving people with disabilities the option to use this program if their quality of life becomes less than they can handle. This means that people with disabilities across Canada who've been forced onto the streets because of the homelessness issue are making use of this program in increasing numbers, while some are using this program to prevent suffering that could have been prevented if the CDB, were initiated now, instead of later.

Most of society is not aware of the service gaps and lack of support offered to persons with disabilities across this Country, and even more are unaware that many within the disability community would love nothing more than to return to work or school if only they had access to housing stability, the food, the services, the products and the healthcare they required to function on a stable, and reliable basis.

In addition to long-term and permanently disabled Canadians who suffer, we must consider those injured at work or through other trauma such as car accidents, slips and falls, and other life-altering events. 

These persons, who now become part of the more comprehensive, ability-challenged group of Canadians, also face a long and arduous battle to access the support they need to recover or adjust to their new realities. This leaves many permanently disabled when access to proper care or devices would have allowed them to heal and return to work. Many within this group include highly educated individuals, including those we rely on the most, such as nurses and other frontline medical staff. This group of Canadians, include all professions, which adds to our staffing shortages across the Country.

The issues persons with disabilities face across Canada are doing nothing but adding to the problems all Canadians face on a daily basis. 

Perhaps, instead of blaming the disabled for their burden on society, it's time to learn more about our realities, hoping that we can all come together and urge our government to change how this group of Canadians is treated.

As society looks for someone to blame for their struggles, it's time to place our energies where they belong, and have always belonged, and that's with the government of Canada and each Province who have legislated this nightmare into existence.

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