Jump to the Call to Action below to see what you can do today to help people who have an intellectual disability during the COVID-19 pandemic.

The public’s attention is focused – rightfully – on supporting hospitals, nurses, doctors, and other front line health care workers. But we forget that there are other people out there who are working hard in our communities to make sure that people with intellectual disabilities are not forgotten.

I don’t think the lack of attention to our sector has been intentional; but it makes me sad. It makes me want to go out there and shout ‘Hey! There are people out here who need support and they’re being left behind!’

– Sylvie Labrosse, Fundraising Manager at Community Living Toronto

 

Today, many people who have an intellectual disability live in ordinary houses and apartments, some with family members, others independently or with roommates. This is due in large part to the Community Living movement, which has been growing since the 1960s. Because of their tireless advocacy, we are seeing more and more people who have an intellectual disability as active participants in the community of their choice. 

For some people, their community includes professional caregivers who provide support for activities of daily living. Through Community Living agencies, people who have an intellectual disability can receive essential services like day programs to learn new skills, employment readiness services, or residential supports. 

Organizations like Community Living Toronto (CLTO) help to build inclusive and welcoming communities where people can live healthy and happy lives.  

 

Now, current social distancing rules to slow the spread of COVID-19 are hitting these communities hard. Day programs have been closed. Gathering places are locked up. Direct support is limited in order to reduce the risk of transmission. And it is all taking a toll. 

The social aspect of the day programs is a huge part of many people’s lives and missing that opportunity has been difficult.

– Day program staff (J), CLTO

The lockdown of the city is a real challenge for the people we support. Getting people out in the community, having them participate in programs, jobs, and volunteer placements… all those types of activities, that’s what we’re about as an organization. 

We have a clubhouse in our CLTO downtown office. People we support can come in to play pool with their friends, watch some TV, get a snack. That clubhouse is a real benefit, it’s like a village. But it’s not available anymore. And it can be really difficult for some people we support to understand why they can’t come to the clubhouse to see their friends.

– Sylvie Labrosse

Social isolation can be a real challenge, and there are factors that heighten the health risks faced by this population during the pandemic. Many people who have an intellectual disability live in close proximity to each other. In group homes and other residential settings there may be limited personal space, and direct contact with multiple people on a daily basis. People who have an intellectual disability face higher odds of developing a severe illness from the virus. We also know that they have higher rates of mental health challenges at the best of times. These challenges will be exacerbated by the ongoing pandemic.

People who provide support – Direct Support Professionals (DSPs) – are not recognized as health care workers. When the pandemic first hit, they did not automatically get priority testing for COVID-19, nor did they have ready access to the PPE supply chain.

This has had an impact on people with intellectual disabilities who rely on these professionals. DSPs assist with activities of daily living like cooking, grocery shopping, budgeting or personal hygiene. DSPs also administer medication and accompany the people they support to appointments. In short, Direct Support Professionals are indispensable. 

During this pandemic, DSPs continue to show up for the people they support. Their commitment speaks volume. The resilience and creativity shown by DSPs and people who have an intellectual disability is a hallmark of how this community weathers difficult challenges. 

Self-advocates are replacing their weekly get togethers with Zoom meetings. Some have a cell phone or a laptop so they can stay in touch with their friends and families. They’ve also been really good at finding creative ways to “go out in the community”, like doing a virtual ROM visit from their living room, or a Netflix party…

For example, Sam is staying in touch with his friends by calling them and playing games online just like other people his age. Jenny left her apartment to go back home with her family. She celebrated her birthday by organizing to have her favourite food brought in and had a virtual dance party. 

– Sylvie Labrosse

Agencies have also had to get creative in order to continue providing optimal support. Constant communication across organizations and collaboration between agencies is the new normal. In a webinar hosted by Community Living Ontario, Jo-Anne Dermick of Community Living Parry Sound shared how they have adopted ‘decision making trees’ to guide employees through different COVID-19 related scenarios. These documents were first written and shared by Christian Horizons, another agency providing support to people with intellectual disabilities.  

At Community Living Toronto, managers and supervisors are helping their teams stay calm and resourceful. The corporate team is making sure that people are getting what they need and that front line workers are being recognized for their work. 

It’s important to show that we have not forgotten anyone. We need to show that we care about them. People are used to interacting with each other and we have to keep those connections going. 

Staff have gone over and above to provide for activities including cooking, crafts, etc. it has been working well. We’re still working with the regular structure of the homes, but challenging ourselves to not be overly routinized…

– Day Program Staff (J), CLTO

Despite the efforts of the community, pressing challenges still exist, such as ready access to technology. Some people who have an intellectual disability have reliable access to the internet and mobile devices, but this is not the case for everyone. 

I have tried to do FaceTime calls to individuals who have the technology, but sadly this is something that is really lacking in most of the individuals we support.  Not having the proper devices or access to the internet has proven to be a big obstacle in this crisis.  Phone conversations and social distancing are difficult for some individuals to manage as the only support that we can offer, and it could be helpful if that were able to use some of the technologies that others use to communicate.

– Adult Protective Services staff, JC, CLTO

In extreme cases, the close living conditions and co-occurring health challenges may result in a crisis. At Participation House in Markham, 37 out of 42 residents and 12 staff members tested positive for COVID-19. At the time of this writing, six people supported at Participation House have died from the virus, including Martin Frogley,  Patricia “Patty” Baird, and Raymond Johnston. The facility is extremely short staffed, prompting an urgent call for volunteers. Former MP, President of the Treasury Board and federal Health Minister Dr. Jane Philpott is among those volunteering at Participation House. 

Canadians are starting to become aware of the fact that some people who have an intellectual disability require the same level of attention we provide to hospitals, long term care facilities and senior homes. This is the time for all of us to double down on our support for this community. Without it, people who have an intellectual disability will continue to suffer disproportionately during this pandemic. 

In an article posted on LinkedIn by Open Future Learning, Mike Bonikowsky, a Direct Support Professional who supports 5 men in Ontario, writes about the questions he is asked each morning … 

“Can we go out today? When can we go out again? Why can’t we? Is it just us?”

“Is it just us?” They are used to the expectation of exclusion – that these rules which are meant to keep people apart only apply to them. Let’s come together and show that we are here for them!

 

Call to action!

Let’s show that Canadians with an intellectual disability will not be left behind. Here are some simple actions you can take to support this community right now:

  1. Cash donations to your local Community Living organization will help cover the cost of PPE, personal hygiene products, and other necessary expenses
  2. Do you have an extra tablet, laptop, or smartphone? Technology donations of any kind will help keep people connected to their friends and families. Contact your local Community Living organization with your offer. 
  3. To show appreciation for DSPs and other caregivers, you can also donate wellness products like lotions, granola bars, subscriptions to wellness & meditation apps, candles, etc. Staff & people with intellectual disabilities benefit greatly from a little pampering during these tough times.
  4. If you see or hear of someone who wants to donate PPE tell them to send it to organizations who support people with intellectual disabilities
  5. Write to, tweet at, email, call, wave across the street at your MP & MPP to demand that Direct Support Professionals be designated as essential healthcare workers.