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.

IN CANADA, our right to die has become easier to access than our right to live with dignity.

CANADIANS WITH DISABILITIES NEED YOUR HELP!

PLEASE SHARE, READ, AND TAKE ACTION!

The link attached below will bring you to one of the best examples I've seen that discusses what's happening in Canada today, as our right to die becomes easier to access than our right to live with dignity.

Canada used to be known as a Country with compassion, but today, we're gaining a reputation as the nation that leaves behind its most vulnerable.

According to No Options, No Choice, 

"Many Canadians living on the margins of society do not have access to the services they need, like palliative care, mental health services, and support for people with disabilities. Their needs can be as basic as lack of housing, food, companionship and financial support. Without access to quality care and resources that would meet their basic needs, their options become limited, and without options, there are no choices."

Without the basics of life, how can anyone move forward from living with the basics of life to flourishing? 

They often can't. 

When you're already living with the excessive challenges that come with disabilities, everything else becomes an even greater challenge to overcome. For some, these challenges are easier to manage, while for others, depending on the disability, they become insurmountable, and this is when programs like MAiD become weapons instead of solutions to a problem.

"At the same time, access to MAiD has been expanded in Canada since its introduction in 2016. In March 2021, the federal government passed revised legislation that changed the eligibility criteria and procedural safeguards for MAiD. The new law grants Canadians with chronic illness or disability who are not terminally ill, the right to seek MAiD.

When they are at their most vulnerable, people may choose MAiD if they don't have suitable options.

We have a social responsibility to help people live their lives on their own terms. When Canadians are at their most vulnerable, they should be provided with meaningful options to live before they are provided with options to die."

What can you do to help?

"Everyone has a role to play. Provincial governments need to enhance their current financial and program commitments to ensure all Canadians can live with dignity. We can all reach out to people we know in our area to provide a helping hand. Churches, NGOs and community groups can equip and coordinate these efforts. We need to restore our Canadian reputation for compassion."

‍

To learn more, please visit:

https://www.nooptionsnochoice.com/...

We do all have a role to play in helping to resolve this deadly Canadian-made and growing problem. I hope you'll join us in the efforts made by a growing number of Canadians who believe that persons who live with disabilities deserve more than what they're living with in Canada today.  

My Story Began With Tarlov Cyst Disease - What is Tarlov Cyst Disease?

Tarlov Cyst Disease (TCD) is how this blogging journey began in 2010. These three words have a huge meaning that wasn't too hard to spell when you consider they're explaining a rare disease that comes with a lot of pain and significant changes to the lives of those who live with these often tiny, occasionally massive spinal cord cysts. 

What is a Tarlov Cyst? 

According to Orphanet Canada, it's more commonly known as a Perineural Cyst, with a disease definition of:

A disorder that is characterized by the presence of cerebrospinal fluid-filled nerve root cysts most commonly found at the sacral level of the spine, although they can be found in any section of the spine, which can cause progressively painful radiculopathy.

According to Canadian patients within the Tarlov Cyst Society of Canada, these cysts are torture and almost impossible to manage once they become symptomatic. In contrast, most Canadian medical practitioners believe them to be nothing more than incidental findings of little to no clinical significance. This belief is based on disproven and outdated medical research that has left nothing but pain in its wake as patients' lives fall apart while the medical community argues over who's right and who's wrong. 

This written and verbal confusion creates even more chaos and devastation in patient outcomes. In this day and age, everyone knows how to use Google, but apparently not doctors. These confusing messages often result in intimate partner and/or marriage breakdown, which can permanently damage the entire family that can reach out for generations. 

Symptomatic Tarlov Cysts are known to cause a type of pain known as 'Intractable Pain,' which is described as;

Intractable pain (also known as Intractable Pain Syndrome/IPS) is a severe, constant, relentless and debilitating pain that is not curable by any known means and which causes a house-bound or bed-bound state and early death if not adequately treated, usually with opioids and/or interventional procedures. 

Unfortunately, the mismanagement and misunderstandings created by the opioid epidemic have created a growing list of lost lives due to suicide while also putting the lives of many Tarlov Cyst Disease patients at risk daily.

Then there's the genetic relationship between Tarlov Cyst Disease and other known, or perhaps unknown conditions, such as Chari Malformation, Connective Tissue Disorders like hypermobile Ehlers-Danlos Syndrome (hEDS), Marfan's and Loey's Dietz Syndrome (LDS). 

Then there's the long list of comorbidities, such as, 

• Cerebral Spinal Fluid (CSF) Leaks 
• Adhesive Arachnoiditis (AA)
• Irritable bladder syndrome
• Irritable bowel syndrome
• Endometriosis
• Myofascial pain syndrome (MPS)
• Chronic Regional Pain Syndrome (CRPS)
• Fibromyalgia
• Secondary depression
• Pudendal Neuralgia
• Enthesopathies (e.g. plantar fasciitis)
• Esophageal dysmotility
• Osteoarthritis
• Insulin resistance
• Metabolic syndrome
• Sciatica
• Hypermobile Ehlers-Danlos Syndrome (hEDS) and any other connective tissue disorder (CTD)

(This list is by no means exhaustive. If you'd like to add more information to this list, please email me at sherri.jones@live.ca with recommendations and any reputable, published journal information that can support your claim.)

The lives of patients with Symptomatic Tarlov Cyst Disease are always at risk due to the ongoing assignment of the terms of; drug seeker, hypochondriac, and mentally ill. When these tags are attached to a patient file, this often results in medical professionals dismissing all invisible or unique health complaints, which could be caused by other more common and apparent diseases such as different types of cancers, diabetes, and heart conditions.

The challenges the Tarlov Cyst Disease patient group faces are enormous and developing as patients age, and prove that the life of this disease can be, and often is, degenerative. Research is required to monitor the development of this condition as people age, aiming to provide deeper information to all patients diagnosed with this disease. This could assist in the decision-making process of what treatments work, what treatments cause harm, and which treatments could be developed to aid in managing this complex and still not well-known disease.