Provincial support delays are hurting disabled Albertans and families, reports find

Children and adults with disabilities are facing lengthy delays in getting the help they are entitled to under two Alberta government programs, new reports have found.

Inclusion Alberta released two reports this week highlighting problems with the Family Support for Children with Disabilities (FSCD) and Persons with Developmental Disabilities (PDD) programs. 

The non-profit advocacy organization was not able to obtain current information from the Alberta government so it surveyed individuals and families who use the programs.

The survey found families are waiting three years on average to access a full range of services offering under FSCD.

Nearly two-thirds of respondents were impacted by the long wait, from job loss to falling behind in their development or facing other physical and mental health challenges. 

About 70 per cent of people who responded to the PDD survey found they still need to meet with a caseworker to develop an outcome plan. The supports people eventually get aren't helping 41 per cent of respondents, the survey found. 

The PDD report found that delays and systemic failures are hurting the people the program is supposed to help. 

"Respondents describe valuable years of life being squandered for adults who remain isolated at home, their skills unused, potential untapped, dreams fading, and health declining," the report says.

Trish Bowman, CEO of Inclusion Alberta, said families are struggling, not knowing when or how they are going to get help. 

"What we hear from families is they're desperate, they feel abandoned," she said. "They're really just at a loss."

Demand is high, province says

The Alberta government acknowledges that demand for both programs is high. 

Ashley Stevenson, press secretary to Jason Nixon, Alberta's minister of seniors, community and social services, said in a statement to CBC that funding for PDD was increased by $45 million last year and held at the same level for FSCD.

"Alberta's growing population, coupled with an increase in the prevalence of disability, has put increased pressure on these programs to keep pace," Stevenson said. 

"This is why the department is working to modernize these programs to ensure it continues to work for Albertans now and in the future. There have been no cuts to either PDD or FSCD funding."

However, the ministry has been cutting funding to advocacy groups in order to allocate money to direct service providers. 

Last week, three organizations that help people with intellectual disabilities advocate for themselves learned their funding was ending at the end of March, 12 months earlier than promised. 

Inclusion Alberta learned its funding is getting cut by $500,000.

Bowman said the funding cuts will affect the education and support her organization gives to rural and urban family associations across the province. 

'There's heartbreak involved'

One Edmonton family is wondering when they will get help for their seven-year-old son, who was diagnosed with autism four years ago.

Eddie Steele said the boy has been waiting for two years to get speech therapy and other services, with no end to the wait in sight.

Steele and his wife are trying provide educational supports at home but are concerned their son's development is getting delayed by the wait. 

"It kills you as a parent because you all you can do is watch," Steele said. "You don't have any control over the situation. And in a sense, you're kind of held hostage to a degree."

Bowman said the story is the same for many families trying to help their children. 

"You know that those are critical developmental years. And when you see them slipping by, you know, there's heartbreak involved," she said.

"We also hear lots of families who are really going into debt and trying to figure out whatever they can do because they're so desperate not to lose those really critical years."