Burnout mounting for families in need of respite services, advocates say

·4 min read

It was a decision parent Katerina Gamlin never wanted to make: continue struggling to care for her young daughter Kassie or hand her over to a government-funded care centre for at least a year.

The 13-year-old suffers from multiple neurological disabilities, including autism and requires constant supervision. Last year, she went into psychosis and was hospitalized.

"Our child is so complex, there's not just one person that can come along and care for her," said Gamlin.

The family has been desperate for respite services, which give short-term relief to primary caregivers. But in B.C., those are in short supply, and many that were available have been put on hold because of the pandemic.

It puts a heavy burden on parents like Gamlin, with few prospects of relief.

"You're emotionally exhausted, you feel like you're not a good parent, that you're not doing everything you can. I hate to admit it, but at some point, you question whether you love the person you take care of," said Gamlin.

The lack of respite services in B.C. has advocates sounding the alarm over the emotional and physical toll on parents, many of whom are burned out while also grappling with the economic and social challenges brought on by the pandemic. For some, it means making the hard decision to give up their children.

Submitted by Katerina Gamlin
Submitted by Katerina Gamlin

Respite removed

Gamlin says once her daughter was discharged from the hospital following her psychosis early last year, the Nanaimo-based family was provided with three-days-a-week respite services in a fully staffed group home.

"We were starting to get some rest," said Gamlin. "I can't tell you how fabulous that was. That was the first time in her life that I was hopeful that things were going to be OK."

But after three months, the Ministry of Children and Family Development pulled the services from them. Gamlin says she was told that children already in government care were taking priority.

According to the ministry, the pandemic prompted MCFD to make service adjustments in April 2020 to "prioritize vulnerable youth and children and youth with support needs."

Gamlin said she advocated for the services to be reinstated for nearly a year but with no success. Whether it was writing to ministries, social workers or politicians, she says she would run into brick walls and closed doors.

Two months ago, after Cassie was hospitalized again, Gamlin made the decision to sign a special needs agreement with MCFD, which means her daughter now lives in a ministry-funded care centre about an hour-and-a-half away. The agreement lasts for one year, and Gamlin retains guardianship.

"I'm thankful every day because she's in a place that is amazing," said Gamlin. "[But] I often get frustrated thinking about how it would be if we did have the respite that we so desperately needed."


Care crisis

Behaviour analyst Jemana Elsharkawi works with special needs children and says she's witnessed first-hand the toll the lack of services has had on families, which has been compounded by the pandemic.

"Many parents have lost their jobs, it's very, very difficult," said Elsharkawi. "We're really in a crisis."

She penned a letter to the MCFD last April calling for more funding for respite for families amid the pandemic, citing a noticeable uptick of parents coming to rely on specialists like her as a lifeline.

"We didn't have enough services prior to the pandemic, and now as things have exacerbated, with families and their children desperately needing more support, what we're seeing is a lot more 911 phone calls ... the toll on the mental health of the families is incalculable," she said.

A ministry spokesperson said B.C. has seen an increase in the number of homes "resuming respite care services since November."

"We aren't yet back to pre-pandemic levels, but we are trending in that direction," read the statement.

For parents that have already made big sacrifices, a return to "pre-pandemic levels" won't be enough.

"The system seems really flawed in why are we not preventing burnout, why are we not preventing children going into care, if there were respite beds," said Gamlin.