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'We feel forgotten': Disability community overlooked during COVID-19, families say

People in Alberta's disability community say they are being left behind when it comes to decisions being made around the pandemic.

Urgent need for protective gear for staff in residences and group homes, say advocates

Government of Alberta says its working with disability community to address their concerns. (CBC)

The inability to access protective gear during self-isolation is a growing fear for Robin Acton.

She lives with her adult daughter, who has Down syndrome, and her husband, who uses a wheelchair.

Acton resorted to having cloth masks made for their support worker, who helps out in their Lloydminster, Alta., household.

"As families who are supporting our sons and daughters with disabilities, who live with us in the community — we feel forgotten," Acton said of reaction to Alberta's COVID-19 response.  

"We're not even on the radar."

Disability advocates say they have been pressing the province for weeks to ensure support staff working in group homes and residences have access to personal protective equipment (PPE). It's not their only concern, given current restrictions on hospital visits.

"We as a family are incredibly fearful of what happens if our daughter gets sick and has to go to the hospital," Acton said.

"She's going to need me or her dad there to help her understand and interpret what's going on. She would be absolutely terrified."

The province did not specifically answer questions from CBC News regarding concerns raised about hospitalization or accessing protective gear.

"Our number one priority is to protect Albertans receiving social services and the dedicated caregivers who support them," Diane Carter, press secretary to Alberta's minister of community and social services, said in an email.

"We are working closely with the disability community to address concerns and assist in understanding and following directives."

Earlier this week, the province directed non-government facilities, including disability service providers, to request protective gear by email.

NDP MLA Marie Renaud says agencies are running out of protective equipment if they had any to begin with. (CBC)

But NDP MLA Marie Renaud, the NDP critic for community and social services, said many organizations are running out of equipment such as gloves and sanitizer. Some organizations do not have any to begin with.

"There is not a lot of clarity around who's going to pay for it. When will they get it? What do they have access to?" Renaud said.

"I hope this gets sorted out quickly. This is a very high-risk group very much like people in long-term care."

Of the 50 COVID-19 deaths in Alberta, 32 are in long-term care homes.

Renaud, who previously ran an organization that oversaw 24 group homes, pointed out that just like long-term care homes, support staff are paid little and often work in multiple locations to make ends meet.

"You need to make sure that the protective equipment is there for people to use so that they can do that work in multiple places as safely as possible," Renaud said. 

A provincial order this week banned support staff from working at multiple long-term care locations. If something similar happens in group homes, Renaud said, low wages and potential staff shortages would simultaneously need to be addressed.

5 cases at 3 group homes

At least five residents or staff at three group homes have tested positive but there have been no deaths, said Tom McMillan, spokesperson for Alberta Health Services.

"In every case, the group homes were immediately notified, and AHS worked closely with the home to isolate anyone at risk of being exposed and ensure all appropriate measures were taken to limit the spread and protect the health of everyone involved," McMillan said in an email. "There is no evidence of transmission occurring within any of these homes."

The organization could not say how many cases or deaths from the coronavirus are among those in Alberta's disability community.

"Health is not reporting cases of COVID-19 among those in specific support groups," McMillan said.

AISH policy under review

The extra expense of PPE for impoverished families, including many on Assured Income for the Severely Handicapped (AISH), also needs to be addressed, said Renaud.  

AISH recipients receive roughly $400 less than those who qualify for federal emergency funds. But under current provincial rules, AISH recipients who lost part-time wages due to COVID-19 are not entitled to a federal top-up.

But Carter said those rules are under review by the province.

"Decisions regarding the treatment of the Canada Emergency Response Benefit for those receiving AISH and Income Support are being reviewed," Carter said.

'The fear is very real'

Trish Bowman, CEO of Inclusion Alberta, said her organization has also been trying to get assurances that people with disabilities will have equal access to care and equipment should there be a shortage.

"The fear is very real for families who have sons and daughters with developmental disabilities," Bowman said.

Overall, Bowman said it has become clear that people with disabilities are not being well-considered in the response to COVID-19 and that needs to change.

"We're having to actually walk things back and try and fix them rather than being included in the upfront planning," Bowman said.

"We feel pretty invisible."

About the Author

Andrea Huncar

Reporter

Andrea Huncar reports on human rights and the justice system. Contact her in confidence at andrea.huncar@cbc.ca

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