Oh Canada: The Inequities of the Canadian Healthcare System for Adults with IDD

Written by Sadia Akbar

While Canada prides itself on its healthcare system, it is well-known to many members of underserved communities that this system is far from perfect. This article aims to shed light on just a few of the many ways in which Canadian adults with intellectual and developmental disabilities (IDD) face inequities in the Canadian healthcare system.

Adults with IDD are a vulnerable population, with high rates of morbidity. They have a higher incidence of developing various chronic conditions such as diabetes, congestive heart failure, chronic obstructive pulmonary disease, seizure disorders, gastrointestinal disorders and psychiatric disorders. In addition, they are less likely to receive preventive care. 

The Institute for Clinical Evaluative Sciences found those with IDD were more likely to die young, be in long-term care, or have repeat hospitalizations and emergency room visits than those without disabilities. These findings applied regardless of the different disabilities patients had. In addition, they found that patients with IDD were more likely to experience alternate level of care, a phenomenon in which individuals are kept hospitalized (spend at least one day in the hospital) despite being medically cleared. This occurred in 4.6% of people with IDD in the study, compared to 0.7% in those without disabilities. 

Adults with IDD also often require longer appointments, which can be a barrier for physicians who are paid in fee-for-service models, meaning they are paid for each service performed (i.e. each office visit, each test run, etc.). One discussed solution to overcoming this barrier is providing incentive payments, which are already used in Ontario for procedures like cancer screenings, for appointments with patients with IDD. These are essentially additional payments provided to physicians, on top of their base payments. 

Further, a study by the University of Toronto found that women with IDD are significantly more likely to experience life-threatening pregnancy complications or maternal death compared to women without disabilities. The adjusted relative risk of severe maternal morbidity or death in women with IDD was 57%, and 74% for women with two or more disabilities. Even after accounting for social determinants of health (e.g. barriers to employment, education, housing and access to healthcare) and their higher incidence of chronic disease, which can result in negative pregnancy outcomes, the disparities were still present. As such, lead author Hilary Brown emphasized the need for establishing pregnancy guidelines catered to supporting women with disabilities and providing adequate training to obstetrical healthcare providers. 

Mental health services are also not adequate for adults with IDD. While there are some specialized services and providers in Canada, they are few and far between, and waitlists for specialized services are typically 4 months or longer. Again, this highlights an overwhelming need for more training for healthcare providers to care for this population and address these service gaps. 

Yona Lunsky, director of the Centre for Addiction and Mental Health (CAMH) Azrieli Adult Neurodevelopmental Centre, argues that the disproportionate focus on children with IDD may be one of the major factors for these gaps in care, as healthcare professionals are not trained to recognize and provide appropriate care for IDD in adults. 

The stigma surrounding IDD is also a factor, as adults with IDD may not want to, or may not be able to, communicate their health concerns in environments, believing they will be treated worse if it is known they have a certain disability. This is often based on past, unsupportive experiences. In tandem with this difficulty in communicating with providers, Alex Haggard, an activist for people with disabilities and having autism and using a wheelchair themself, states: “When you're perceived as not competent, you're denied autonomy and the ability to take control over your own decisions in relation to your health. If you try to assert your own control, they assume you don't actually need support.”

Progress and significant alterations to Canadian healthcare provisions must be made to better accommodate adults with IDD and bridge this gap in the healthcare system. As previously noted, specialized education and training is one of the most commonly cited solutions. Following this, programs catered to caring for patients with disabilities is a strong next step. For example, Sunnybrook Hospital in Toronto opened an Accessible Care Pregnancy Clinic, one of the first of its kind in North America. Finally, it is imperative to note the nothing about us without us approach when redesigning healthcare services for people with IDD; the system must listen to the needs and wants of this population by providing them with seats at the table. While Canada prides itself on its healthcare system, it is well-known to many members of underserved communities that this system is far from perfect. This article aims to shed light on just a few of the many ways in which Canadian adults with intellectual and developmental disabilities (IDD) face inequities in the Canadian healthcare system.

Adults with IDD are a vulnerable population, with high rates of morbidity. They have a higher incidence of developing various chronic conditions such as diabetes, congestive heart failure, chronic obstructive pulmonary disease, seizure disorders, gastrointestinal disorders and psychiatric disorders. In addition, they are less likely to receive preventive care. 

The Institute for Clinical Evaluative Sciences found those with IDD were more likely to die young, be in long-term care, or have repeat hospitalizations and emergency room visits than those without disabilities. These findings applied regardless of the different disabilities patients had. In addition, they found that patients with IDD were more likely to experience alternate level of care, a phenomenon in which individuals are kept hospitalized (spend at least one day in the hospital) despite being medically cleared. This occurred in 4.6% of people with IDD in the study, compared to 0.7% in those without disabilities. 

Adults with IDD also often require longer appointments, which can be a barrier for physicians who are paid in fee-for-service models, meaning they are paid for each service performed (i.e. each office visit, each test run, etc.). One discussed solution to overcoming this barrier is providing incentive payments, which are already used in Ontario for procedures like cancer screenings, for appointments with patients with IDD. These are essentially additional payments provided to physicians, on top of their base payments. 

Further, a study by the University of Toronto found that women with IDD are significantly more likely to experience life-threatening pregnancy complications or maternal death compared to women without disabilities. The adjusted relative risk of severe maternal morbidity or death in women with IDD was 57%, and 74% for women with two or more disabilities. Even after accounting for social determinants of health (e.g. barriers to employment, education, housing and access to healthcare) and their higher incidence of chronic disease, which can result in negative pregnancy outcomes, the disparities were still present. As such, lead author Hilary Brown emphasized the need for establishing pregnancy guidelines catered to supporting women with disabilities and providing adequate training to obstetrical healthcare providers. 

Mental health services are also not adequate for adults with IDD. While there are some specialized services and providers in Canada, they are few and far between, and waitlists for specialized services are typically 4 months or longer. Again, this highlights an overwhelming need for more training for healthcare providers to care for this population and address these service gaps. 

Yona Lunsky, director of the Centre for Addiction and Mental Health (CAMH) Azrieli Adult Neurodevelopmental Centre, argues that the disproportionate focus on children with IDD may be one of the major factors for these gaps in care, as healthcare professionals are not trained to recognize and provide appropriate care for IDD in adults. 

The stigma surrounding IDD is also a factor, as adults with IDD may not want to, or may not be able to, communicate their health concerns in environments, believing they will be treated worse if it is known they have a certain disability. This is often based on past, unsupportive experiences. In tandem with this difficulty in communicating with providers, Alex Haggard, an activist for people with disabilities and having autism and using a wheelchair themself, states: “When you're perceived as not competent, you're denied autonomy and the ability to take control over your own decisions in relation to your health. If you try to assert your own control, they assume you don't actually need support.”

Progress and significant alterations to Canadian healthcare provisions must be made to better accommodate adults with IDD and bridge this gap in the healthcare system. As previously noted, specialized education and training is one of the most commonly cited solutions. Following this, programs catered to caring for patients with disabilities is a strong next step. For example, Sunnybrook Hospital in Toronto opened an Accessible Care Pregnancy Clinic, one of the first of its kind in North America. Finally, it is imperative to note the nothing about us without us approach when redesigning healthcare services for people with IDD; the system must listen to the needs and wants of this population by providing them with seats at the table. While Canada prides itself on its healthcare system, it is well-known to many members of underserved communities that this system is far from perfect. This article aims to shed light on just a few of the many ways in which Canadian adults with intellectual and developmental disabilities (IDD) face inequities in the Canadian healthcare system.

Adults with IDD are a vulnerable population, with high rates of morbidity. They have a higher incidence of developing various chronic conditions such as diabetes, congestive heart failure, chronic obstructive pulmonary disease, seizure disorders, gastrointestinal disorders and psychiatric disorders. In addition, they are less likely to receive preventive care. 

The Institute for Clinical Evaluative Sciences found those with IDD were more likely to die young, be in long-term care, or have repeat hospitalizations and emergency room visits than those without disabilities. These findings applied regardless of the different disabilities patients had. In addition, they found that patients with IDD were more likely to experience alternate level of care, a phenomenon in which individuals are kept hospitalized (spend at least one day in the hospital) despite being medically cleared. This occurred in 4.6% of people with IDD in the study, compared to 0.7% in those without disabilities. 

Adults with IDD also often require longer appointments, which can be a barrier for physicians who are paid in fee-for-service models, meaning they are paid for each service performed (i.e. each office visit, each test run, etc.). One discussed solution to overcoming this barrier is providing incentive payments, which are already used in Ontario for procedures like cancer screenings, for appointments with patients with IDD. These are essentially additional payments provided to physicians, on top of their base payments. 

Further, a study by the University of Toronto found that women with IDD are significantly more likely to experience life-threatening pregnancy complications or maternal death compared to women without disabilities. The adjusted relative risk of severe maternal morbidity or death in women with IDD was 57%, and 74% for women with two or more disabilities. Even after accounting for social determinants of health (e.g. barriers to employment, education, housing and access to healthcare) and their higher incidence of chronic disease, which can result in negative pregnancy outcomes, the disparities were still present. As such, lead author Hilary Brown emphasized the need for establishing pregnancy guidelines catered to supporting women with disabilities and providing adequate training to obstetrical healthcare providers. 

Mental health services are also not adequate for adults with IDD. While there are some specialized services and providers in Canada, they are few and far between, and waitlists for specialized services are typically 4 months or longer. Again, this highlights an overwhelming need for more training for healthcare providers to care for this population and address these service gaps. 

Yona Lunsky, director of the Centre for Addiction and Mental Health (CAMH) Azrieli Adult Neurodevelopmental Centre, argues that the disproportionate focus on children with IDD may be one of the major factors for these gaps in care, as healthcare professionals are not trained to recognize and provide appropriate care for IDD in adults. 

The stigma surrounding IDD is also a factor, as adults with IDD may not want to, or may not be able to, communicate their health concerns in environments, believing they will be treated worse if it is known they have a certain disability. This is often based on past, unsupportive experiences. In tandem with this difficulty in communicating with providers, Alex Haggard, an activist for people with disabilities and having autism and using a wheelchair themself, states: “When you're perceived as not competent, you're denied autonomy and the ability to take control over your own decisions in relation to your health. If you try to assert your own control, they assume you don't actually need support.”

Progress and significant alterations to Canadian healthcare provisions must be made to better accommodate adults with IDD and bridge this gap in the healthcare system. As previously noted, specialized education and training is one of the most commonly cited solutions. Following this, programs catered to caring for patients with disabilities is a strong next step. For example, Sunnybrook Hospital in Toronto opened an Accessible Care Pregnancy Clinic, one of the first of its kind in North America. Finally, it is imperative to note the nothing about us without us approach when redesigning healthcare services for people with IDD; the system must listen to the needs and wants of this population by providing them with seats at the table.



Photo by Sharon McCutcheon on Unsplash