KJIPUKTUK (Halifax) – As the lockdown continues many families who share a home with a person who lives with a disability are no longer receiving respite services. This is causing all kinds of grief.
This comes on top of reports that many parents of children with disabilities feel abandoned by the province now that all teaching has switched to on-line.
A respite worker comes into a family’s home to give both parent and child a break. In Nova Scotia, families may be eligible to receive funding for a respite worker through the Department of Community Services.
With the pandemic some respite workers hesitate to enter homes, and families may share these hesitations. In other cases respite workers are off work because they need to self-isolate.
“Families are juggling a lot right now during the third wave of the pandemic, they’ve been through this two times prior, so mental health and burnout is a concern, not just for parents but also for children and adult children who are in the home,” says Cynthia Carroll, Executive Director of Autism Nova Scotia.
“Mental health is definitely a big concern right now for families in financial distress, specifically for low income families who might have lost their jobs or have had their jobs impacted by COVID,” Carroll says.
In some cases families still have access to respite workers, as long as a family feels comfortable with that,” says Carroll. But if that’s not the case then that leads to further isolation.
The absence of respite support in some cases forces family members to take time off.
But that is easier said than done… Some working families cannot afford to take time off for their child right now, or maybe they are essential workers themselves. And daycare, with its wait list, frequently isn’t an option either.
In other cases, parents working from home now have to manage taking care of their child during the day while working, says Carroll.
People may be working until late in the evening before they’re able to call it a day, she says.
Every child who lives with a disability is different, their needs can differ in many ways. Depending on the child, they may require constant interaction.
On-line contacts sometimes can bring some relief.
“We’ve heard these amazing stories of respite workers video chatting and having dance parties, or to watch Netflix together online.” says Carroll. “It’s not the same as personal contact, but it does provide a bit of a break.”
Carroll also mentioned how workers and children have found other unique ways to connect that were not available before.
“It’s getting creative with what you have sometimes. It’s not easy and every situation is different. It really depends on the family and the worker, but it’s been really inspiring to see how creative some of their workers and families have gotten to stay connected.”
Although the course of this pandemic has been unpredictable, Carroll likes to remind families that eventually we will get back to what life was like pre-pandemic and to try to find moments in your day to practice self-care.
“I can’t stress how important it is to just sometimes take it hour by hour, some days, your best is going to be 10% and some days it’s going to be 150% and that’s okay.” says Carroll.
Carroll also wants families to know that Autism Nova Scotia is available for families to call for emotional support.
“If families are feeling overwhelmed, they can certainly reach out and call us at Autism Nova Scotia, speak to the respite coordinator for the central region,” says Carroll. “The central region respite operates out of Autism Nova Scotia, but it’s a cross-disability service. And we want all families to feel comfortable to reach out and even just talk if they need to.“
You can find the respite coordinator contact info at Autism Nova Scotia’s website.
James Piercey is enrolled in the two-year Radio Television Journalism program offered at the Nova Scotia Community College. He is doing a one-month internship at the Nova Scotia Advocate.
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