POLITICS
09/15/2019 08:00 EDT

Meet Adam Essien, The Dad Who Accidentally Became A Champion For Kids With Autism

His family is paying $2,200 a month on therapy for their five-year-old who has autism.

HAACO Ontario/Twitter
Adam Essien, right, has a five-year-old son with autism. The Ontario dad says that therapies that treat autism should be covered by the Ontario Health Insurance Plan.

TORONTO — The minister never responded to Adam Essien’s email, but the response he did receive from others lasted for months. 

The father-of-two, who lives in Stoney Creek, Ont., emailed Ontario’s minister of children, community and social services in February. He copied others, including staff at the Ron Joyce Children’s Health Centre, where his son attends programs for autism.

“I’ve had hospital managers come up to me and say, ‘That email made my weekend! I shared it with my husband!’” he told HuffPost Canada. “And my wife is standing there like, ‘Who is this woman and why is she talking to my husband?’”

In the email, Essien argued that Ontario should define services for kids who have autism, including speech therapy and applied behaviour analysis (ABA), as “medically necessary.” That way, they would be covered by the Ontario Health Insurance Plan (OHIP).

‘An atrocity’

A few weeks earlier, Minister Lisa MacLeod had announced that her government would clear a long waiting list for services by providing funding for families. The money would be capped at $20,000 a year for children under the age of six and $5,000 a year for kids under 18. Families would be cut off after receiving $140,000. 

Essien calls the plan “an atrocity.” The Progressive Conservatives have since backtracked and pledged to redesign the program.

Watch: Ontario Premier Doug Ford demotes Lisa Macleod in a cabinet shuffle. Story continues after video.

 

Once he saw the impact of his email, Essien decided to dedicate more time and effort into advocating for his son and other children like him.

“It spun out of control within a matter of six to eight weeks. I thought, ‘You know what? If it’s going to be like that, I might as well ride it,’” he said.

“I am the last guy who should be doing it. I’ll admit it. I’m not that type of guy. I’m a programmer, I’m not an advocate.”

In the spring, Essien launched a website and a petition, calling on Prime Minister Justin Trudeau to designate autism services as medically necessary. More than 6,000 people have signed it.

I’m not that type of guy. I’m a programmer, I’m not an advocate.Adam Essien

“The treatment is a medical treatment and it has been misclassified,” Essien said.

He said there are therapy providers and even government staff who have said privately that they support his petition, but they’re “handcuffed” by their jobs and can’t speak publicly. 

“The people who have a lot of influence ... can’t say anything because their jobs are on the line, their funding’s on the line,” he said. 

“They stand to lose a lot more than we do as parents.”

One PC MPP has expressed some support for the idea. Roman Baber, the MPP for York Centre, said that the Ministry of Children, Community and Social Services might be the wrong department to handle this. 

A spokesperson for Baber confirmed to HuffPost that he made the comment at an event for Hispanic parents of kids with autism, but said the MPP did not want to comment further. 

Roman Baber/Facebook
Ontario MPP Roman Baber poses at Queen's Park in Toronto in this Facebook photo.

Ontario’s Ministry of Health won’t cover autism therapies because they’re not provided by a physician, government spokesman David Jensen told HuffPost by email. 

He said OHIP covers relevant services, like the diagnosis of autism, that are provided by a medical doctor. 

“Ontario is taking a cross-government approach to how we can better integrate health and social supports to meet the needs of children with autism and their families,” Jensen said. 

He said the two ministries are collaborating to regulate the clinicians who do ABA, which will standardize services across the province.

Ontario is taking a cross-government approach to how we can better integrate health and social supports to meet the needs of children with autism and their families.David Jensen

Essien said it’s “not a valid argument” to say that only a physician’s services should be covered by OHIP. He noted that in the United Kingdom, autism services are provided by the National Health Service. 

Coverage for these services would go a long way for families. This summer, Essien and his wife paid $2,200 a month to secure 40 hours of ABA therapy for their son. That was after they moved from Mississauga to Stoney Creek just to access services at all. 

“I couldn’t even get on a waitlist to get on a waitlist for services for the boy in Mississauga,” said Essien.

It’s paid off. Their son, whose name Essien does not want published, has really improved this summer. 

“He’s not severe but he’s not mild either … He struggles with the ability to talk to other people, particularly kids his own age.”

Adam Essien
Adam Essien shares a picture drawn by his five-year-old son. He says his son has fantastic visual and spatial skills.

This summer at camp, he started to play with other kids, said his dad. 

“That’s been a lot of fun to watch,” Essien said. And it’s “in large part” due to the ABA therapy. 

But Essien and his wife could only afford that much therapy by using money from an inheritance and a retroactive tax credit for children with disabilities. 

“It took some real creative financing” to not “plunge ourselves into debt,” Essien said.

“The financial gymnastics that I had to pull off were ridiculous. Somehow, I managed, but I realize that most people can’t.”

He said a public system that gave every family access to quality services would benefit the entire population. 

“I want [my son] to get what he needs but I want these other kids to get it too. Because if they get it, a large percentage of them — if not all of them, are going to thrive, are going to succeed, are going to be productive members of society,” Essien said.

“They’re going to help other people in turn. These kids have talent. These kids have gifts. These kids have abilities that we should be unlocking but, for political reasons, we’re not.”