Funding delays have a St. Albert mom concerned for the well-being of her 10-year-old son.
Kristi Rouse is worried that her son Nathan, whose services have been halted for weeks, may not get renewed for his Family Support for Children with Disabilities (FSCD) funding, which allows him to access much-needed experts including psychologists, occupational therapists, speech pathologists and a social skills group.
Nathan has been receiving support through FSCD since 2015, which has provided him with help navigating his Autism, ADHD, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS), and an oral language-based learning disability.
Typically the contracts renew seamlessly without a stoppage in service, but this time the contract was not renewed on time and Rouse doesn't know when, or if, their funding will be renewed and support will start again. The recent contract expired June 30 and now three weeks into July, the family is still waiting.
“I feel like we are really under the microscope right now,” Rouse said.
Every six months the Rouse family has to renew Nathan’s contracts while FSCD reassess his situation to see if he needs to continue the services he has.
“Ideally the review of documentation happens beforehand. And there's no disruption in service, everything is just kind of seamless,” Rouse said.
“This time we've had disruption as well as being in limbo.”
This has left Nathan without visits from specialists, which makes his mom concerned about his long-term future development.
Rouse said having to navigate the renewal process every six months to make sure her son gets the services he needs is already stressful, but with the uncertainty an already difficult situation is made worse.
“It really sucks. It really does,” Rouse said. “It’s exhausting. It’s constant.”
“It is always constantly in the back of your mind. How is this going to impact his outcome come adulthood without proper supports and services in place?”
And the delays Nathan is facing could be life changing.
“Every day that goes by impacts the future outcome.”
Rouse said with the right supports for Nathan in his childhood, he can have an independent life, go to post-secondary and obtain and keep a job.
“But the alternatives without proper funding and support are really not attractive.”
Rouse isn’t sure what is causing the delay in funding but the family can’t afford to pay for the expensive specialists on their own, so for now Nathan has no appointments and isn’t being treated.
“You’re reluctant to make any plans because somebody is going to be on the hook to pay for it, whether that's FSCD or us personally,” said Rouse, who is on the FSCD regional parent advisory council. She said some parents who have children that need 24/7 care are at one end of the extreme because the parents may not be able to work in order to care for their child.
St. Albert MLA Marie Renaud, who is the official Opposition critic for Community and Social Services, said she has heard concerns like this from across the province and this probably isn’t isolated to the Rouses. Along with FSCD funding, Renaud had heard that people have also been struggling with accessing Persons With Developmental Disabilities (PDD) funding.
“I'm hearing this from many parents of children that are having difficulties, whether it's months waiting or just not having calls returned. There are delays and an inability to bill so something is happening,” Renaud said.
The MLA reached out to Rajan Sawhney, Community and Social Services minister, who told Renaud that there have been no changes in processing applications since the change in government.
“I'm not sure what's happening. I think it's just an example of the disconnect, perhaps between the ministry and the bureaucracy. I don't know. So there's a disconnect somewhere, because the messages that I'm hearing from people today, these are very similar, similar issues,” Renaud.
In a statement Sawhney said the eligibility and funding levels have not changed and in late June she said she became aware of an increase in the wait list of families and individuals.
“As a result, I instructed the department to address this backlog, and as of this week I can report that it has been reduced by over 85 per cent since July 1. The balance of requests will continue to be addressed. In addition, I have directed departmental staff to streamline our processes for families and for individuals to receive their service agreements and funding on a timelier basis,” Sawhney’s statement read on July 17.
While the minister said there have been no changes, Renaud said something has changed since the change in government to have caused these delays.
“There have been no changes, I get that because the regulations haven't changed, and the legislation hasn't changed, and the budget hasn't changed. However, something has definitely changed since a change in government. This does not happen without some kind of change,” Renaud said.
“Something is happening,” Renaud said.
Rouse is concerned she is going to be waiting until the fall provincial budget to get approved for funding or to see if the criteria for funding persons with developmental disabilities will change.
“It all boils down to, what is this fall budget going to look like?” she said.