Walking to Ottawa for autism

In the middle of winter this year, Stefan Marinoiu left his home in Scarborough, wearing barely adequate clothes and a Bristol board.

The 49-year-old was heading to Ottawa — on foot.

The message on his Bristol board read ‘Autism Time for National Solution.’

Stefan Marinoiu (right) says that he always wanted to do something for his 15-year-old son with autism, Simon (left) to get him a treatment.

Stefan Marinoiu (right) says that he always wanted to do something for his 15-year-old son with autism, Simon (left) to get him a treatment.

“My wife tried to convince me not to go because it’s winter. But I had made my mind to go to Ottawa. So I just left without saying anything. When I called my family two days after I left, they asked me to come back,” said Marinoiu, the father of a 15-year-old boy with autism.

But there was no going back for him, for he was committed to his cause of raising public awareness about autism, hoping to gain the federal government’s support for a possible cure.

“In my view, autism is a national problem,” he said. “This is not a provincial problem anymore because the number of children with autism is increasing.”

Nearly one in 165 children suffers from autism, with a total of about 70,000 people in Ontario with the problem, according to the Ministry of Children and Youth Services.

The provincial government funds two therapy programs, Intensive Behavioural Intervention and Applied Behaviour Analysis, to aid autistic children in developing their everyday skills.

In Alberta, the government has set up an intensive support system for autism paying $60,000 a year per child for their treatment while in Ontario therapy treatments are hardly available.

“The provincial government in Alberta has decided to take the issue seriously by funding at the appropriate level. But unfortunately the McGuinty Liberals are not interested in making sure that these families and kids have resources they need,” said Andrea Horwath, MPP for Hamilton Centre.

Children in Ontario are forced to be put on a waiting list for several years while the cut-off age to begin therapy remains at seven years old. Simon, Marinoiu’s son, was also one of them.

“We trusted the government and social workers. They helped us by putting us on the waiting list, but at the end, nothing happened,” Marinoiu said.

Today children are diagnosed with autism at 18 months old, but when Simon was a toddler in the 1990s it was not done until age four. Due to a late diagnosis, as well as long waiting periods, when Simon finally reached the top of the waiting list at the age of 10, he was already regarded as too old to receive treatments.

As Simon becomes stronger and more violent each year, Marinoiu is afraid his youngest son, Paul, 6, may get hurt some day.

Lia, Marinoiu’s 16-year-old daughter, says that no matter what age and how late therapy starts for these children with autism, it will still make a significant difference in improving their learning capabilities, as well as their ability to talk and act and increase their potential to integrate themselves into the society.

“Currently, only 10 per cent of the children who are diagnosed early can actually get through the waiting list and receive therapy. Those who don’t want to wait and are able to afford private treatments end up spending as much as $30,000 to $80,000 a year for therapists,” Lia said.

A recent class-action lawsuit called for the right of parents to bring private therapists into the schools. There is currently a shortage of government appointed therapists and they are the only ones allowed to practise there.

“When the provincial election came around, the government did promise families with autistic children that they are going to provide the health care, more therapy, and shorter waiting lists for the autistic children but things have not been changed.

“There shouldn’t be a waiting list. As soon as they are diagnosed, they should be put into therapy and get as much help as they can,” Lia said.

During his long journey to Ottawa, Marinoiu received many offers of support from people he met along the way. The OPP picked him up in Oshawa and let him sleep at the shelter because they were afraid he would freeze to death. One family in Newtonville offered him food and accommodation, while he was able to stay at a church in Colborne.

To further support her father’s movement and promoting it to a wider audience, Lia created a group on the popular Facebook website. The number of the members has reached almost 2,500. People from across Canada — Toronto, Ottawa, New Brunswick, and even British Columbia — joined the group.

On Feb. 11, on the last day of her father’s journey and 11 days after he had left Scarborough, Lia visited her father and joined him in the cold weather.

“It was really cold on that day. When we reached the Parliament, there were camera crews and news reporters from lots of media. Even French newspapers reported on my father. I couldn’t believe the response we got,” Lia said.

Father and daughter were greeted by Sen. Jim Munson in Ottawa. They also got to meet health minister, Tony Clement — although Stefan says Clement’s response was not positive.

The Canadian constitution establishes that health care, education and social services are the responsibility of the provinces. The Marinoius are skeptical as to how serious the Ontario government is fulfilling its duties.

“A constitution is not a bible. If something doesn’t work, you need to change it. But it’s hard to find a people who do things,” Stephan said. “People say that politics is a game but for me I don’t think it’s a game. It’s about children.”

In the past some parents with autistic children have been charged for the abandonment or murder of their children.

“The government officials don’t know how stressful and painful this is for parents,” Stephan said.

Upon returning to Toronto, the Marinoius are planning to send several letters and emails to the provincial government and hope to take the initiative further by making appointments with MPPs.

“My feet are still in pain after 12 days of walking, so I have to see a doctor,” Marinoiu said. “But this is nothing compared to the hard life autistic children and their parents experience.

“Who is going to speak for my son and for all the autistic children who cannot speak for themselves?”

The Marinoius hoping provincial or federal governments take initiatives and expand the therapy services without the limitations of the age.

“It’s not fair. Adults never get help,” Lia said.

In Ontario, once the children under treatment reaches the age of 18, therapy ceases. As a result, some lose their developed skills learned earlier by the therapy programs. Others have to be kept in residential facilities and forcefully controlled by drugs.

Simon attends a high school with his sister, Lia. Along with other autistic children in the same school, he faces the possibility of being held there until the age of 21. Upon completing his education, Simon has very few options. He can wait to be admitted to an institution or simply stay at home without any help.

Without any support from public or private therapists, Marinoiu says the school is like a babysitting service for his son because there has been no improvement in his life.

Horwath says government needs to be more supportive of therapy in schools because not only can children get treatment there but they can get an education.

“There’s been a lot of evidence showing that in the U.S. or Alberta, kids are able to access the continuous therapy services not only in school but also throughout their life,” she said.

“We can make huge differences in the lives of children with autism, as well as their families. As therapy becomes available at their schools, the stress of their families in lining up on long waiting lists and the frustration of seeing their child’s condition worsening without help can be relieved,” Horwath said.

“If Alberta can do it, so can Ontario. If the U.S. can do it, so can Ontario.”

About this article

By: Miho Takaya
Posted: Feb 27 2008 12:00 pm
Filed under: Features