Seeking commitments to end the deadly health inequality faced by B.C. citizens with intellectual disabilities

Special Olympics BC's 2020 challenge to election candidates

Thousands of British Columbians are needlessly facing premature death. Our province’s citizens with intellectual disabilities are dying up to 20 years earlier than the general public. They experience two to three times more preventable hospitalizations, and suffer from dramatically higher rates of obesity, mental illness, over-medication, and poor oral health.

This is not because a person with an intellectual disability is inherently less healthy – but because of structural, social, and communication factors that stop them from getting the same level of health care as everyone else. They’re dying earlier because of things we can change.

People with intellectual disabilities have been severely marginalised, facing alarming health outcomes their whole lives. Now more than ever, with the added challenges of COVID-19, this needs to change. It can mean the difference between life and death.

Special Olympics BC issued a call to all candidates in the 2020 election to commit to engaging with people with intellectual disabilities and their supporters, to work together to end these deadly and unacceptable health conditions.

The questions to candidates

1. Will you commit to changing the deadly and unacceptable health conditions faced by individuals with intellectual disabilities?

2. Will you engage individuals with intellectual disabilities and their supporters during the policy-making process on all issues that impact their health and wellbeing?

3. When in government, will you commit to ensuring the Ministry of Health prioritizes improving health outcomes and quality of life for people with intellectual disabilities?

4. Will you commit to creating a governmental task force to improve the health of people with intellectual disabilities?

5. Will you commit to supporting sufficient funding and resources to ensure people intellectual disabilities will no longer face inequality in health and in life?

Please click here for our tracker of candidate outreach and responses.

The deadline for response was October 9.

The context

There is little data available specifically about individuals with intellectual disabilities in B.C. They are still far too often the forgotten members of our society. And that comes with horrifying health results.

It’s not that the wider population doesn’t care. When we present the facts we do know, people are shocked and appalled. They want to end the suffering of their neighbours with intellectual disabilities, who bring vital contributions to all communities. Now is the time when B.C.’s politicians must step forward and take a leadership role to create essential and lasting change.

The barriers people with intellectual disabilities face in the health system matter now more than ever with COVID-19. They can mean the difference between life and death. Health care professionals may not know how to communicate with people with ID about COVID-19 prevention and symptoms in a way that they understand. Hospitals are not set up to address the communication and sensory needs of people with ID. Health care professionals may not feel comfortable or confident conducting nasal swabs or other procedures on people with ID, who may have a harder time cooperating. They may not be able to convey testing results, explain treatments, and give instructions in a way that people with ID can follow, understand, and comply.

Now is the time when the Government of B.C. must lead the way to develop the research and bring together the necessary actors to change the game for people with intellectual disabilities. There are a range of vital partners who stand ready and willing to help, but the Government needs to commit to providing the funding and framework around which we can all gather and work together to end these tragic circumstances.

This must be done because it is the right thing to do. It must be done because Canada has signed the UN Convention on the Rights of Persons with Disabilities, which states that people with disabilities have the right to equal health care. It also must be done because it will save the health care system millions.

The budget implications of a failure to adequately address the health needs of this population could be dire. While a lack of available provincial data makes it hard to speak uniquely about people with intellectual disabilities in B.C., the Ministry of Health’s own data has shown that health care expenditures for people with illness or disability accounts for 50 per cent of all health system expenditures, with liabilities reaching $5.2 billion. We also know that for those with medium and highly complex chronic conditions, expenditure is expected to increase by 76 per cent and 98 per cent respectively by 2036. These are Ministry of Health figures from 2015 – before COVID-19.

The exact prevalence of intellectual disability in B.C. is not known, but based on national population estimates, there may be nearly 61,000 citizens with intellectual disabilities across the province. This impacts every community.

The data

From Ontario, national, and global findings

Obesity is found in children with intellectual disabilities at rates 2 to 3 times that observed in typically developing children.
Individuals with intellectual disabilities are hospitalized for potentially preventable hospitalizations at a rate 2-3 times that of the general population.
50 per cent of individuals with intellectual disabilities are dispensed multiple medications concurrently, with 22 per cent being dispensed five or more concurrently.
Individuals with intellectual disabilities are more likely to have poor oral hygiene, periodontal disease and dental caries than the general population.
44 per cent of adults with intellectual disabilities have had a mental illness diagnosis over a two-year period.
34.3 per cent of women with intellectual disabilities were screened for cervical cancer, compared to 66.8 per cent of their peers.
Among children with a disability, between 39 and 68 per cent of female children and 16 and 30 per cent of male children will be sexually abused before their 18th birthday.

SOBC findings – Healthy Athletes Screening Survey

80 per cent of athletes at least sometimes find it difficult to understand their doctor’s advice or directions, yet only 31 per cent always have somebody accompany them to their doctor’s appointments.
50 per cent of athletes visit a medical professional more than four times per year, 12.5 per cent visit more than 10 times per year.
12.5 per cent of athletes have been unable to purchase necessary medications due to insufficient funds.

The actions you can take

Government/Candidates

The Government of B.C. can lead the way in creating a task force to research the issues and structural support to promote active lifestyles, foster inclusive communities, tackle sexual violence and substance abuse, encourage healthy diets, and promote mental health and wellbeing.

An improved service network for individuals with intellectual disabilities will reduce dependence on strained services, build capacity and confidence amongst services, ease burdens on caregivers, and encourage healthier lifestyles. It is our belief that B.C. has the resources and expertise necessary to become a national and global leader in the field of health services for people with intellectual disabilities.

Will you commit to providing sufficient resources, and prioritizing change in our health care system to ensure people with intellectual disabilities will no longer face inequality in health and in life?

Citizens

Tell your local candidate you care. Tell them they cannot stand by and let this unacceptable situation continue.

Write, email, or phone your local candidates – please click here to download a template letter, but please do feel free to add your own emotions and experiences.

Call your local candidate and speak out at all-candidate forums – please click here to download suggested questions and facts to help the conversation. Please do feel free to add your own remarks!

Write to them on social media – please click here to download suggested posts, but please do add your own comments. Please click here for graphics you are welcome to use.

More background information

Data source: Proposed BC Health Framework for Individuals with Intellectual Disabilities

This detailed report on the health of individuals with intellectual disabilities was researched and written for Special Olympics BC. It has been shared widely, and to date, no one has contradicted the contents. It is an accurate yet painful picture of the realities faced by individuals with intellectual disabilities.

Data source: Special Olympics International fact sheet on health inequity for people with intellectual disabilities in the COVID-19 era

Why is Special Olympics BC driving this?

To be a great athlete, you must be a healthy athlete.

We have seen the health of Special Olympics athletes is not what it could and should be. We have seen they lack access to what they need. We have been working with health care professionals and other essential partners to understand the issues and change the game.

Perspectives

Special Olympics BC Director and Past President Grenville Finch-Noyes speaking about his sister Charmian, an early Special Olympics athlete in Ontario, who died of undiagnosed cervical cancer when she was 47 years old: