The message to parents fighting against changes to the Ontario Autism Program was loud and clear on Tuesday evening; "do not stop fighting".
The Northern Ontario Autism Alliance held a town hall meeting at the Garson Community Arena on April 16, and were joined by Hamilton MPP and NDP child and youth services critic, Monique Taylor.
"When this government brought forward their plan, it wasn't based on kids, it was based on numbers, so right off the bat it was wrong," said Taylor, speaking about the changes to the Ontario Autism Program.
"They took a system that the Liberals put into place that we know had a lot of problems, and we're talking 15 years of neglect from that government that led them to a place where autism doesn't end at five, and who all showed up then? You all showed up, parents before you showed up and were able to fight back and say that this wasn't OK and that our kids need evidence-based and needs-based services, and we were able to fight back and get some changes in place. We had a program that had the basis of being good, but they left a few boxes that could've been checked and left the door open for this government to come in and destroy everything that was there."
When Children, Community and Social Services Minister Lisa MacLeod announced changes to the OAP on Feb. 6, the response from parents was swift and strident, as rallies began forming here in Sudbury and across the province.
Parents scrambled to figure out how they would provide much-needed services like ABA (applied behavioural analysis) and IBI (intensive behavioural intervention) to their children under a new funding model that was based on age and household income, and allowed for a maximum of $140,000 for a child in treatment from the ages two to 18.
Pressure put on by parents has caused the Conservatives to backpedal and MacLeod has said that she has taken into consideration the complaints of parents, who launched numerous protests over the plan first announced in February.
Starting next month, parents – and any member of the public – can participate in an online survey, as well as a series of telephone townhall consultations and members of provincial parliament from all parties will have opportunities to host roundtables in their ridings.
The original Ontario Autism Program announced in February capped the amounts families could receive at $20,000 a year for kids under six, with funding dropping to $5,000 per year until they were 18. The maximum amounts were only available to families earning less than $55,000 a year.
Many parents balked at the proposed funding model, pointing to the high cost of service for children with severe needs, whose therapy can cost upwards of $80,000 per year.
MacLeod and the Conservative eventually relented after weeks of protests, announcing last month that they would eliminate the income testing, and that kids currently in government-funded therapy would have their services extended by six months.
"Nobody likes what they're doing, not even (Ford's) own base," said Taylor. "This six month extension is a tactic, they think that you'll lose motivation. You have to stay motivated and keep fighting."
Similar to the last town hall meeting hosted by the NOAA (https://www.sudbury.com/local-news/parents-speak-out-at-ontario-autism-program-town-hall-meeting-1324652), those in attendance on Tuesday heard stories from parents of children with Autism Spectrum Disorder, and the strides they had made thanks to therapies like ABA and IBI.
Worry was painted on the faces of those who shared their stories, fearful that all the progress made by their children could be lost if there is no funding for their therapy. One parent, Natasha, sent a pre-recorded video, speaking about her challenges as an autism parent living in Espanola, and having to travel for treatment.
Under the new OAP, families traveling less than 100 km (one-way) may use up to 10 per cent of their annual Childhood Budget. Travel expenses may include bus, train, parking or mileage at $0.40 per km for a private vehicle for roundtrip travel.
The government announced that travel costs can be included as expenditures of childhood budgets, however, this will reduce a child's budget, meaning children who have to travel for treatment will have less access to services than children living in a city with services nearby. Some rural residents, such as Natasha, will be travelling upwards of two hours roundtrip for services.
Some rough math provided by Natasha indicated that at about 70 km away from Sudbury, her roundtrip is about 140 km, four times a week for her child's services. At $0.40/km, that works out to about $56 per day, and $224 per week. In just one month, Natasha will have used up $1,000 of the $5,000 she has access to for services like therapy, physio, speech therapy, and technological aids.
Sudbury MPP Jamie West rose to speak at the meeting, saying he was inspired by the stories the mothers shared.
"The theme here is it's usually the mothers. The mothers are the ones who stop working, whose dreams end so that they can take care of their child," said West.
"The role of government is not to put up barriers in front of people. This six month extension, they're hoping you'll forget about this. They don't seem to understand that we love our kids, and that in six months the same demand is going to be there. This is why you need to keep sharing your stories, keep fighting, keep bringing up the questions that need to be asked. Your strength is in your stories, so don't ever give up fighting."
Parents who want to share their stories can do so at wearethe100percent.ca.
For more on the Northern Ontario Autism Alliance, visit them on Facebook.
