SYDNEY, N.S. — A Cape Breton woman who has an adult son with intellectual disabilities says the province is making restrictions under the Public Health Act without understanding who they are making them for.
Charlene Hunter of Homeville said her son John Hunter, 30, is in a group home in the Cape Breton Regional Municipality.
Although the first phase of relaxing some restrictions in long-term care facilities began June 15, allowing supervised social-distanced outdoor visits, Charlene says she can’t visit her son. She says she can't because he wouldn’t understand why he couldn’t hug her or leave the property for his regular overnight visit home.
“To understand what it means to families, to real people, they have to understand what intellectual disabilities mean,” she said. “My son is very ritual. Everything is fine as long as it’s within the routine.”
Prior to the pandemic, Charlene would make up a little calendar of 21 blocks leading up to their visit day and every day John would count the days left until the visit.
“That’s how he makes sense of this whole thing, of his life,” she said. “He doesn’t understand all the language but he’s very visual.”
Charlene always picks him up at 1 p.m. and if they are going to be even 10 minutes late, the worker has to set a timer to help him get through the delay. When arriving at the group home her son would hug her, put on his shoes, walk outside and get in the car.
Charlene would then take her son for supper and to buy treats for the other people in the home. He stays overnight and goes back between 5 p.m. to 8 p.m. the next day.
“There is a fine line between keeping them safe and doing more harm. It’s not just about disappointment or being sad for our son, it could be more in-depth.”
When the pandemic first started mid-March, people were allowed to take their loved one home and keep them in the home bubble throughout it. However, Charlene said because her son is so ritualistic, he’d want to go back after the usual 35-hour visit as a routine is what he understands.
Charlene’s husband Gary Hunter is a fisherman and goes away to fish for a couple months at a time. When John hears "fishing," he understands his dad is away. During the lockdown, the staff has been telling him his mom and dad are fishing.
“It’s the only thing he understands of why mom and dad aren’t there," Charlene said.
She believes the time is right to release people in group homes into their family's care for visits home.
The group home has made wonderful progress with her son and to change his routine could set him back causing serious consequences, including self-harm.
“There is a fine line between keeping them safe and doing more harm,” she said. “It’s not just about disappointment or being sad for our son, it could be more in-depth.”
With businesses and services starting to open up, Charlene is worried they’ll be hit with a second wave and it will turn into a year before she can see him again.
“If you had a son with an intellectual disability and you couldn’t go see them, how are you going to feel? How do you think that child feels? They have no idea why we’re not there.”
In the meantime, Charlene said the group home has done an incredible job keeping the residents safe.
Officials from the group home did not return a call asking for comment.
GO FOR A DRIVE
Phyllis Frost of Mira said her 28-year old daughter has intellectual disabilities and is in a group home in Richmond County. They are originally from Arichat.
Frost said her daughter’s group home shouldn’t be classed with long-term care restrictions because the residents are people with intellectual challenges, not individuals needing nursing care.
Frost said she doesn’t have an issue with social distancing but families are allowed bubbles and yet they can’t even take their daughter off the property for an outing.
“Even if I could just take her for a drive, she’d be much more content,” Frost said. “I wouldn’t even mind signing a paper that we wouldn’t take her anywhere as I know you are protecting yourselves as well as others.”
DISABILITY SUPPORT PROGRAM ALLOWS FLEXIBILITY
Lynette MacLeod, a spokesperson for the Department of Community Services, said restrictions in place for long-term care homes, per the Health Protection Act order, do not apply to disability support program licensed group homes. In an email, MacLeod said there are exceptions that will allow the mother and son to visit.
“We encourage families of participants to discuss their situation with home staff.”
Additional protective measures such as symptom screening, proper hand hygiene, limiting visits to two visitors, and using masks can help reduce the risk when participants cannot adhere to physical-distancing guidelines.
“Our philosophy is this should not exclude our residents from being able to receive visitors. It should not cause the visits to end while in progress.”
MAKING IT WORK
Harman Singh, CEO of the Breton Ability Centre in Sydney River, said they respect and adhere to the guidelines set out by Dr. Robert Strang, the chief medical officer of health for Nova Scotia.
When reopening long-term care facilities was discussed, Breton Ability Centre decided to do it in phases.
The centre provides services and supports to people coping with complex challenges due to severe developmental disabilities, mental health challenges, or complicating physical disabilities.
“We know some people with intellectual disabilities have other underlying medical conditions as well and that makes them even more susceptible to the virus,” Singh said. “So obviously we want to err on the side of caution.”
Supervised outdoor visits are being held by appointment. Visitors are screened, must wear masks and chairs inside tents are set two metres apart. Everything is sanitized after each visit.
Singh said staff recognizes that following social distancing guidelines may be difficult for some and there could be occasions where there is some contact during the visits.
“Our philosophy is this should not exclude our residents from being able to receive visitors,” she said. “It should not cause the visits to end while in progress.”
Last week, Singh said she watched one of their residents excitedly wanting to get closer to his parents than the mandated two-metre distance.
“That’s understandable, he hasn’t seen them in four months.”
If the person wants to hug, parents are encouraged to sit them down, talk to them and support them in other ways. They know that can sometimes be difficult and additional precautions would be put in place for those who do not practise social distancing, such as ensuring the resident’s hands are washed properly after the visit.
Singh said parents have been understanding of the need for these regulations.
“It’s all about recognizing for some of our participants they don’t understand why they can’t hug their parents or hold their hand,” she said. “For those people, we’ll just make sure we exercise special precaution.”
