Care for autistic adult son makes it hard for Ontario father to make ends meet

A widowed father is pleading for help as he struggles to afford care for his autistic son who has aged out of the system.

Nigel Green’s son Seth, whose 21st birthday is this month, needs assistance with daily life skills and can’t be left safely on his own.

While in school, Nigel says Seth was in a multiple exceptionalities class, where he received one-on-one support. He thrived in the environment but aged out of the school system last June. Nigel then met with a case worker to find a facility that would meet Seth’s needs.

The first facility Seth’s caseworker found cost $1,700 a month but would only have a ratio of five people to one staff member. They later told Nigel they wouldn’t be able to take on Seth at the level of care he needed.

A second facility was able to take on Seth one-on-one. However, in November, the monthly fee was close to $6,000, for just six hours of care per day.

“Nobody can afford that,” said Nigel. “It would leave me with nothing, I would have nothing.”

A new case worker was able to find a program for Seth for $4,200 a month, as well as government funding that would cover three months.

Seth is eligible for Ontario’s disability passport program, and receives just under $20,000 a year. He also receives about $14,000 from the Ontario Disability Support Program. Once Nigel factors in the costs for respite care on weekends and evenings, the single father would still have to pay close to $40,000 a year for all the care Seth now needs. He said he can only afford about half of that.

“The system essentially abandons them” once they age out, Nigel told CityNews. “The funding is not there and it’s all on the parents, I don’t know how the parents are doing it.”

“I’ve been depressed, suicidal wondering what the heck I’m going to do,” he said.

Nigel has considered keeping Seth at home, but he said that wouldn’t be good for his son in the long-term, and Nigel would have to quit his job.

“He needs the socialization; he needs intellectual stimulation,” he explained. “It would be cruel to keep him in the house all day.”

Elizabeth Hunter is an adult referral and supports coordinator with Autism Ontario. She said she receives about 100 calls a month for help for those who are caring for autistic family members.

“The number of individuals aging out of childhood programs is only increasing and adulthood lasts a long time.”

“I have heard of families who have sold their house, families who have used up their savings to support their loved ones,” explained Hunter.

“It’s not always that the parents or the caregivers are in a place where they can reach out for help, sometimes they are suffering at home in silence, just accepting that this is what’s going to be their life now,” explained Hunter.

“It’s devastating in terms of their social isolation and mental health. They’re not just parents, but we have siblings, we have grandparents, even cousins coming forward as caregivers because there’s no system that is adequate to support their loved one.”

The Ontario government says more than 59,000 Ontarians are receiving yearly support under its passport support program. The amount of support ranges from $5,500 to $44,275, and the amount of funding is based on need.

“A lot of families are in the position where they have to top up that amount with their own money,” said Hunter, noting expenses like housing also vary across Ontario.

“It’s not equitable across the province,” she added. “Some of it comes down to the ability of the caregiver to navigate the system. It’s an involved application process that not everyone finds easy to manage.”

Life hasn’t been easy for Nigel. He has been raising Seth and his daughter on his own since his wife died of cancer in 2013.

“It’s been tough, but this isn’t the first time. I sat through nine years of watching my wife and that wasn’t easy at all, but I find this more jarring to my soul than that,” expressed Nigel. “This is my son, he’s depending on me, I don’t know what to do.”

In 2020, Ontario’s auditor general found that 19,500 people are on the waitlist for government funding through the disability passport system, a number that had grown by a third in the preceding four years. In the same time, the auditor general said funding for the program grew from $184.6 million in 2015-16 to $434.1 million in 2019-2020.

A spokesperson for the Ministry of Children, Community and Social Services said the government is looking at ways to better support adults with developmental disabilities including autism.

“Given the unique sets of challenges they face, developing an effective and ambitious plan will take time,” a spokesperson said in a statement. “As we always have, our government continues to look at how we can best support those who need us.”