Rita Fahlman loves being a grandmother, but says it hasn’t been easy as she struggles to get help to support her autistic grandson who has complex needs.
Six years ago, she and her husband received a call at their home in Olds, Alberta. social services to pick up their three grandchildren — a baby, a two-year-old and a four-year-old — who could no longer be in their mother’s care due to substance abuse and mental health issues .
From day one, the battle was uphill as the couple tried to navigate the legal system and find the right resources to care for their eldest grandson, Colton, who has non-verbal and low functioning autism.
“At first, there was no support. We were quickly fired by social services and closed our case,” Fahlman said.
“They didn’t point us in any direction and then, with a severe disability which the older boy had, we had to learn by trial and error.”
Colton is now nine years old and is functioning at a three- to four-year-old level. He needs constant care, which forced Fahlman to quit his job.
“He can hurt himself and others, which is tragic,” she said.
This is reflected in the 28 stitches Colton currently has across his nose and behind his ear after hitting his head against a shattered class window pain.
“It was my worst nightmare,” Fahlman said. “This is their home, although we understand that for the safety of all children, Colton must be taken care of.”
Colton was offered an out-of-home placement in Innisfail, but the family turned it down due to a number of logistical and operational issues, including the fact that the staff member there had never worked with a autistic child.
Fahlman says this was evidenced during an initial visit when Colton smeared feces in his new room and the worker was unequipped to help.
“It was a generous offer that we had to drop because it was not in Colton’s best interest. He was not going to be treated or receive the quality of care he deserves as a human being,” she said.
The family are grateful for the support they currently have, including a worker who helps Colton seven hours a day, but say the most ideal option is out-of-home foster care. They say it would allow Colton to stay in touch with his family, school and community, but Fahlman says they face contract changes, red tape and long waits.
Rita Fahlman’s grandson, Colton, is now nine years old and is functioning at a three- to four-year-old level. He needs constant care, which forced her to quit her job.
“Colton can learn and he can grow and we’ve seen him, we’ve seen him respond and it’s just delicious, when we have special workers investing the time,” she said.
“Is this a fight that we stop fighting? Absolutely not. It is a fight that we will continue to fight as exhausting as it is.
Disabled workers face a “personnel crisis”
Many disability workers and advocates say they aren’t surprised by Colton’s story because it reflects how Alberta’s disability services are failing those who need it most.
The Alberta Disability Workers Association (ADWA), a provincial advocacy organization, says the industry is facing a ‘staffing crisis’ and has launched the ‘Essential but Forgotten’ campaign calling on the provincial government to take action.
According to the ADWA, workers paid to support people with disabilities in Alberta have not had a raise since 2014 and many are being forced to quit their jobs for other jobs.
“We’re talking about the staffing crisis, the turnover that’s happening, and just the cost of inflation,” said Dale Cena, program coordinator at the Calgary Scope Society.
“People are working two jobs and now they have to leave the industry because they can’t afford to pay the bills, they can’t afford to pay their rent anymore. It’s a real shame.”
While many workers with disabilities are not union members or government employees, ADWA’s online petition calls for immediate action from the provincial government, increasing funding for Family Support Programs for Children with Disabilities (FSCD) and people with disabilities. with developmental disabilities (PDD), to help increase salaries and retain staff.
“We want to show that we are essential. We are skilled workers who deserve adequate compensation,” said Cena, who has seen firsthand the decline in morale and patient care during his 15 years in the industry.
“People are desperate. I am very worried about the future of our sector, not only is it about the increase in wages, but it is about the quality and the attention given to our customers. What it will do is leave a void for the people we support. Heartache and loss.
The government is investing $3.6 million to improve access to inclusive care
The provincial government recently announced an investment of nearly $4 million to help parents of children with special needs access inclusive child care in the province.
The funding is part of a bilateral agreement with the federal government that brings the total investment to $7 million.
In a statement, Community and Social Services Minister Jason Luan says Alberta has some of the best supports in the country for children and adults with autism, including the FSCD and PDD programs.
“As part of a commitment to the platform, we have also invested $1.5 million to increase access to family resource centers to better support families and people with disabilities.
The statement adds that the province is working to improve the FSCD and PDD program, including reducing red tape and speeding up access to services.
“Work is underway to modernize technology and processes to ensure consistent service delivery across the province. This will improve service delivery, client experience, timely access and reduce red tape and administrative burden for families.
Bruce Uditsky has worked with Inclusion Calgary for 25 years and remains a Senior Advisor for Inclusion Canada.
He agrees that Alberta historically has had one of the best family support programs in Canada, but says we now lag behind in wages and training opportunities for people in the sector.
“We could potentially see families breaking up if certain steps aren’t taken very soon,” he said.
“There has always been room for dialogue, but what is missing in my opinion is at least some action that follows that dialogue.”