‘He snatched her future away from her’: mother of severely autistic girl

‘He snatched her future away from her’: mother of severely autistic girl

Tina Walker didn’t expect to see Premier Doug Ford at the Scugog Community Recreation Centre in Port Perry for a family skate on Feb. 10, but when she spotted him as she walked into the arena with her two children who fall on different ends of the autism spectrum, she had one goal in mind.

“I wanted him to see these kids, to see the difference in these kids and to realize that they are not equal, and you can’t fund them equally, they need to be funded based on their needs,” the Oshawa mother said. Joining Walker that day was her 8-year-old son Jackson, who has “mild” autism and 6-year-old Sloane, who is “severely” autistic. Both were diagnosed at 3.

Jackson received about 16 hours of therapy after three years on the Ontario Autism Program wait-list. He then went back on the wait-list, where he has stayed for the past two years.

Sloane got into the program quicker, and the family started receiving funding for her therapy in 2016. While Jackson attends school, Sloane has been in full-time intensive behavioural intervention therapy since last April as she is non-verbal, hasn’t acquired daily living skills (toilet training, getting dressed) and doesn’t understand that certain actions, such as running into the street, are dangerous.

Hosted by Progressive Conservative MPP Lindsey Park, the Feb. 10 skating event became a weekend stop for the Walker family after the government’s Feb. 6 announcement on changes to the province’s autism program. The changes include the government’s plan to eliminate the wait-list of 23,000 children within 18 months. To do so, the government introduced a “childhood budget,” which is essentially an amount of funding up to a maximum of $140,000 that children with autism could receive until they turn 18. Families with incomes over $250,000 would not be eligible for funding. The government also plans to boost funding to the province’s five diagnostic hubs from $2.75 million a year to $5.5 million a year for 2019-20 and 2020-21 to tackle a 2,400-person wait-list and “help more children receive an autism diagnosis sooner and help connect families to local services in their communities.”

Many have said the government’s plan doesn’t go far enough, with one PC MPP’s legislative assistant, Bruce McIntosh, resigning because he said he couldn’t defend the changes.

Walker wanted to speak with someone in the government about what she said was an announcement that left many parents “shell-shocked.”

A simple event like a family skate day is something Walker would otherwise not take her children to.

“(It’s) something out of the realm of an activity for parents of an autistic kid, we can’t take our kids to these things,” she said.

“I thought ... if you want to mainstream these kids, this is what you’re going to see — you’re going to be seeing meltdowns, you’re going to see screaming, you’re going to be dealing with kids who are overstimulated,” she said of her reasoning for attending.

Walker described the premier as “friendly” as they started talking. Sloane was behaving as she normally did.

“She was flopping to the floor … I have her in a harness for her safety, so she’s tugging at the harness, she’s climbing on things, she’s trying to get away, because she can’t, she’s getting frustrated so she’s making noises,” said Walker, who then told the premier about her week.

“(I said), ‘I have to tell you this has been a very stressful week, it’s been a very disheartening week, because we are greatly affected by the funding changes that your government has announced,’ ” she said, with the premier then inquiring about the therapy services Sloane was getting. Sloane is scheduled to continue her therapy until May, after which time Walker fears her daughter will be placed back into school because of reduced funding for therapy.

She said that’s when the premier turned the conversation toward the kids who are on the wait-list, saying he wants to help all kids, and those Walker said he termed as the “have-nots.”

At that point, Walker was eager to introduce him to Jackson, who has been on the autism program’s wait-list for several years.

“I understand those parents on the wait-list, I get it, I am one of them, but as you can plainly see ... they are not equal, they do not need the same amount of intervention, you can plainly see that she needs so much more,” Walker said, adding that she wanted to stress to Ford the long-term effects the announced changes would have.

“So Jackson gets his funding, Jackson gets his speech therapy, his (occupational therapy), he gets some help with the behavioural issues that he has, he goes to high school, he graduates, he gets a job, he pays taxes, he gets married, he has kids, he does what everyone in life is striving to do to live to their potential,” she said.

“Sloane will never go to high school, she will never have a job, she will never pay taxes and she will never live on her own, she’ll never have kids, and this province will support her in a group home for 50 years of her life,” added Walker, who by this time during the interview was in tears.

She said they continued their discussion for a while, before shaking hands and taking a photo.

“It was a civil exchange, I did my best, hopefully I made an impression upon him, and he understands that this funding is not going to help in the way that he thinks it is,” she said.

Walker said she thinks Sloane has the potential to go to high school, for example, with continued intensive therapy, but she fears that her daughter will not have adequate access to it with the government’s changes. Currently, Sloane’s therapy costs around $100,000 a year, but once they lose some of that funding, they won’t be able to afford to pay for therapy out-of-pocket, Walker said. According to the Ministry of Children, Community and Social Services, a child registered in the autism program at the age of six would be able to receive up to a total of $55,000 until the age of 18, an amount that would also be dependent on a family's income.

“These kids have the potential to do this, but they need this therapy to unlock that potential,” she said, adding that autistic children often have to be taught things other people might take for granted.

“People whose kids are normal, they want their kids to be exceptional, people like us whose kids are exceptional, we just want them to be normal, we just want them to have the same opportunities that every other kid gets, and ... that’s 100 per cent what this therapy is for, and without it she will never get (that),” Walker said. “(Ford) is condemning her to a subpar life ... and that’s how I felt last week, (as though) somebody had snatched my child’s future right out of my hands, he snatched her future away from her.”

Walker said she also went out to a community coffee chat that Environment Minister Rod Phillips held on Feb. 9 in Ajax. Phillips, she said, asked a lot of questions about her children, Sloane’s therapy and seemed “genuinely interested” in hearing about her daughter’s progress.

Walker said because Sloane is mostly non-verbal, communicating can be an issue. But her daughter’s response of “waffles” this past weekend when given two breakfast options was a “wondrous thing for a child like that,” Walker said. She said Sloane is also improving with eye contact and actually sitting with family members.

One of Walker’s concerns now is what is going to happen during the summer months, especially since Sloane can’t go to a regular summer camp. The fact that Sloane was in full-time therapy, including during the summer months, also allowed Walker to recently re-enter the workforce as an interior designer after six years.

“We’re frustrated, we feel hopeless, we don’t know what to do, we don’t know what we’re going to do,” Walker said. “You thought that you had your life finally in working order, and things were going smoothly and you can start thinking ahead to the future and (it’s) just gone,” she said.

Walker is one of many parents across the province who have been vocal during the past week about their disappointment in the government’s announcement. Parents and advocates have launched a set of protests across the province this week. While they are being advertised and co-ordinated by the Ontario Autism Coalition, they’re being organized at a “grassroots level by the parents.”

“The objective is to send the message to the local MPPs that people right there in their individual ridings are affected by these changes and they are not happy with them,” said Laura Kirby-McIntosh, president of the coalition. She said while most protests have targeted PC MPPs’ offices, some are also being held as rallies of support with MPPs from other parties. And in many cases, parents have arranged meetings with the MPPs during their demonstrations, Kirby-McIntosh said.

“(It’s) to let them know that maybe the message they’re getting from the premier’s office and (Children, Community and Social Services Minister) Lisa MacLeod’s office is not entirely accurate, in particular this idea that the only people who are protesting are the parents who are in service, that is patently untrue,” she said.

Kirby-McIntosh said people can also expect educators to show up in support, because they understand the impact the program changes might have on children.

“The biggest impact will be felt by the education system ... because they know that once kids aren’t getting therapy at the intensity level they need, and they’re plunked into the school system, our school system isn’t ready for them,” she said.

The Ministry of Children, Community and Social Services said that it will work with the education ministry to provide the required supports and transition services to children with autism. The ministry also noted that school boards must develop Individual Education Plans for students who have been identified as "exceptional" by an Identification, Placement and Review Committee.

QP Briefing also contacted the premier's office and will update this article with any response. Meanwhile, during a press conference on Feb. 13, Finance Minister Vic Fedeli and Treasury Board President Peter Bethlenfalvy defended the government’s changes.

Fedeli called the plan a “fair, sustainable and equitable” one, adding that families in North Bay told him “the money is of no value to them if they can’t spend it on the things that are important.”

Bethlenfalvy said he’s proud of the compassion MacLeod has shown, including her previous requests for emergency funding for the program.

Neither of the ministers committed to additional funding beyond the $321 million slated for the program.

“The longer term (goal) is to make sure that this program is sustainable, that it is fair ... and so that’s our approach right now,” Bethlenfalvy has said.

-With files from Jessica Smith Cross

Sneh Duggal

Reporter, Queen's Park Briefing

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