Working in the disabilities field for any length of time you learn a couple things. First, you learn that health care and public perception has come a long way in its view and treatment of people with disabilities. Second, you learn that there is still a long way to go. Having the opportunity to start the journey towards my Masters in Health Studies and taking this course has afforded me the opportunity to learn about the health care system within Canada; its strengths and weaknesses, its gaps and opportunities, and its past, present and future direction. It is through this knowledge that I reflect on this course as well as how I can apply all that I have learned to my profession.
People with intellectual disabilities have a long and storied past as it relates to their place within the Canadian health care system. Unfortunately, this past is not positive, and is very similar in comparison to many other vulnerable groups within Canada. Whether it be applying the definition of what health is; understanding the determinants of health; the challenges and limitations of both political and federal legislation; the impact of the spheres of influence affecting this population; the chronic disease rates in comparison to the general population; or the future direction health care is taking in meeting the needs of people with intellectual disabilities there are a lot of factors to consider. People with disabilities have been inadequately served by our health care system in the past and, I would argue, despite some major improvements and shifts in perspectives within the system, continue to be underserved.
The most widely used definition of “Health” is the World Health Organizations. First developed in 1948 its description of health as a “state of complete physical, mental and social well-being and not merely the absence of disease or infirmity” has not seen any major changes since its inception (World Health Organization, 2019). Using this definition, most of use would be unhealthy most of the time (Huber, 2011). When we take this further and apply this definition to those with disabilities, we soon find more limitations. If someone has a physical or intellectual disability, they would technically be unhealthy all the time. If someone comes from and currently lives in a troubling social environment they would be unhealthy until they were able to change that; and some never do. So, are people with disabilities unhealthy? The answer is no. We must adapt our definition of the word “Health” to change with shifting social values, ebb and flow to encompass everything that is health and provide opportunity for everyone, no matter their ability, to fit into the realm of health. As one such article describes, health must include the ability to adapt (Canguilhem, 2009). So what is health when we look at disabilities?
The determinants of health is a good place to start. Figure 1 shows a breakdown of various factors that contribute to someone’s overall health. York University broke this down even further, into the social determinants of health. This model explores 14 determinants of health, including:
1. Aboriginal Status
2. Disability
3. Early Life
4. Education
5. Employment conditions
6. Food Insecurity
7. Health Services
8. Gender
9. Housing
10. Income and distribution
11. Race
12. Social exclusion
13. Social safety net
14. Job security
(Mikkonen, J., & Raphael, D., 2010)
Figure 1.
For the purpose of this blog post each factor individually will not be explored however it is important to note that many factors go into determining if someone is healthy, and disability is only one of them. Figure 2 shows one factor; in this case, employment integration, in which Canada is behind many other countries in their treatment of those with disabilities. Understanding what health is remains the first step, how does Canada then provide support through the health care system for this population?
Figure 2.
If you explore the history of treatment of people with disabilities in Canada you will soon find there are many chapters Canada is looking to rewrite. The most horrific chapter likely could be attributed to the science of Eugenics. This was a belief that people with disabilities were lesser and did not deserve to procreate. In Alberta, it was popularized by the Sexual Sterilization act of 1928 and continued with a change in 1937 permitting sterilization of “mental defectives” without their consent (Canadian Human Rights History, 2019). This legislation continued until 1972; a notable example includes the Michener Centre in Red Deer Alberta, contributing to 2844 sterilizations as well as countless human rights violations (Wingrove, 2013). The agency I work for supports many people that used to be supported by the Michener centre and even the name triggers PTSD like behaviour and reoccurring trauma. Michener, although modified in its supports after 1972, stayed open until 2013 when the institutionalized model of care was no longer a socially acceptable method. Other legislation to support and provide equal opportunity to those with disabilities took is lacking as well, with the most notable being the Persons with Developmental Disabilities Community Governance act in 2000, creating the government agency Persons with Developmental Disabilities (PDD) who provides contracts to disability support agencies (like the one I am employed at)(Bond, 2014). Its amazing to think only 19 years ago PDD did not exist. A little known fact, a huge part in the creation of this act goes to the family advocates of people with disabilities, lobbying the government for more supports. Without them who knows when legislation would have been implemented. With this brief look into the history of disability as it relates to the Canadian health care system its important to ask, where are we now?
People with disabilities are still one of the most vulnerable populations within our society. Individuals with disabilities witness many barriers to proper health care as well as see increased chronic disease rates, and many spheres of influence within the health care system, both federally and provincially, that negatively impact the quality of care received. One of the biggest barriers to care continues to be stigma. Many health care professionals harbour negative feelings towards people with mental illnesses and their ability to recover and thrive, especially those with dual diagnosis (addictions and mental illness) (Knaak et al, 2018). Many treatment facilities lack the resources to deal with dual diagnosis individuals, and the societal stigma often compounds people’s inability and unwillingness to seek help. This can be seen through any layman “con” argument against innovative treatment models such as harm reduction. In fact, a study showed that 73.1% of people viewed others perceptions about their mental health struggles as a barrier to receiving treatment (Adams et al, 2010). In general, people with disabilities have 2-3 times the rate of unmet health care needs in comparison to the general population (Casey, 2015). Additionally, in Ontario, early mortality rates in individuals with intellectual disabilities is 6.1%, almost four times higher than the general population at 1.6% (Mcquigge, 2019). My guess would be this figure is eerily similar across Canada. Overall, we see a population that, despite progress being made, is still very much underserved.
Hope is not lost however, and belief in the system to correct its past mistakes is still at the forefront of many new initiatives in health care. Courses in interprofessional care for new health care professionals has shown improved skills and positive attitudinal changes when it comes to peoples views and work with those with intellectual disabilities (Jones et al, 2015). Shifts in morals within disability support agencies, focusing on person-centered planning and the importance of having the supported person as an integral decision maker in their programming, rather than not even at the table, has sparked a huge shift in meeting clients needs and improving quality of life for those they support. Programs around breaking down stigma like The Working Mind (Figure 3 shows a training tool from The Working Mind helping disseminate Mental Health as a resource to all in order to reduce stigma) have opened the door for people to speak openly about their mental illness and seek needed help without fear of judgment. Although there is still a long way to go, there are champions of change working to make it happen.
Figure 3.
As a country, we pride ourselves on our inclusiveness, our ability to welcome everyone no matter his or her background and ability, but our health care system is seriously lacking in this same belief system. As a country, and as a people, we have a duty to our most vulnerable populations, including people with disabilities, to provide social programs with enough funding and resources to provide equal opportunity to every Canadian citizen, and protection from social factors that negatively impact their health. This course has afforded me the knowledge of the Canadian health care system and the chance to apply it to my field of interest. Whether it be determinants of health, spheres of influence, government health legislation, chronic disease, or vulnerable populations, all these areas play an integral role in shaping the health care system of tomorrow that not only recognizes people with disabilities, but provides them with successful interventions and opportunities. The agency I work for does business behind the vision of “Breaking barriers; creating opportunities” and it is through this course and courses to come that I hope to pass on what I learn in order to make this a reality within the disability field.
Brayden Sharp-Chrunik, BSc.
Resources:
· Adams, E.F., Lee, A.J., Pritchard, C.W.& White, R.J. (2010). What stops us from healing the healers: a survey of help-seeking behavior, stigmatization and depression within the medical profession. Int J Soc Psychiatry. 56(4), 359-370.
· Baumbusch, J., Moody, E., Hole, R., Jokinen, N., & Stainton, T. (March 2019). Using healthcare services: Perspectives of community-dwelling aging adults with intellectual disabilities and family members. Journal of Policy and Practice in Intellectual Disabilities, 16(1), 4-12-9p.
· Bond, R., & McColl, M. A. (2013). A review of disability policy in Canada (2nd ed.) Canadian Disability Policy Alliance.
· Canada Human Rights History. (2019). Eugenics. Retrieved April 4, 2019, from https://historyofrights.ca/encyclopaedia/main-events/eugenics/
· Canguilhem, G. (2009). What is health? the ability to adapt. The Lancet, 373(9666), 781. DOI: https://doi.org/10.1016/S0140-6736(09)60456-6
· Cassy, R. (April 2015). Disability and unmet health care needs in Canada: A longitudinal analysis. In Disability and Health, 8(2), 173-181.
· Government of Canada. (2018). Social determinants of health and health inequalities. Retrieved from https://www.canada.ca/en/public-health/services/health-promotion/population-health/what-determines-health.html
· Huber, M. (2011). Health: How should we define it? British Medical Journal, 343,(7817), 235-237. https://doi.org/10.1136/bmj.d4163
· Jones, J., McQueen, M., Lowe, S., Minnes, P., & Rischke, A. (2015). Interprofessional education in Canada: Addressing knowledge, skills, and attitudes concerning intellectual disability for future healthcare professionals. Journal of Policy and Practice in Intellectual Disabilities, 12(3), 172-180-9p.
· Knaak, S., Szeto, A., & Dobson, K. (Fall/Winter 2018). Stigma towards mental health disorders in healthcare: Research, findings and programs from the mental health commission of Canada's opening minds initiative. OOHNA Journal, 37(2), 37-41.
· Mcquigge, M. (2019, February 21). People with developmental disabilities more likely to encounter healthcare problems in Ontario. The Globe and Mail, Retrieved April 5, 2019, from https://www.theglobeandmail.com/canada/article-people-with-developmental-disabilities-more-likely-to-encounter/
· Mikkonen, J., & Raphael, D. (2010). Social determinants of health: The Canadian facts. Toronto: York University School of Health Policy and Management: Library and Archives Canada Cataloguing.
· Owen, F., & Griffiths, D. (2009). In Owen F., Griffiths D. (Eds.), Challenges to the human rights of people with intellectual disabilities (1st ed.). London and Philadelphia: Jessica Kingsley Publishers.
· Swarna, H., & Pike, K. (November 2016). Equal access to quality health and healthcare for people with intellectual disabilities. New Brunswick Association for Community Living.
· Wingrove, J. (2013, March 15). Alberta's Michener centre can't shake sordid history. The Globe and Mail, Retrieved April 5, 2019 from https://www.theglobeandmail.com/canada/article-people-with-developmental-disabilities-more-likely-to-encounter/
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