It was a spring-like Friday morning but there were no signs of new growth, nurturing fragile life or hope for the future in the faces and words as over 50 protesters met to oppose the new legislation around autism funding as created by the Ford government through Minister Lisa McLeod.
In fact, the anecdotes and experiences of those who had been advocating locally through M.P.P. Bouma, or his office in his absence, had a common refrain. “I was told my bringing up this issue was news to him.” The next protester, ‘He told me the same thing the week earlier!” “I was told he didn’t have any details on the funding proposed.” And another,” His staff said to send him an e-mail with questions and he would provide answers.” No one came out of the constituency office to address the gathering crowd despite his Executive Assistant being informed of the impending protest 15 minutes before it began. The police were called, however, and two police cruisers attended within moments and determined concerned parents, children, colourful signs and a service dog were not a threat and left.
The signs were succinct and based on facts lived daily by family members and caregivers struggling with supporting children suffering with Autism.
Autism is not a simple diagnosis as some would have you believe, it is a spectrum of behaviours, physical and psychological symptoms as diverse as each child’s needs and requiring years of individualized care plans and specialized treatments.
Penni, was at the protest, a mother of a 12-year-old with Autism Spectrum Disorder (ASD) who had been diagnosed at age 3. At 3 and half years, he regressed to ‘near infant’ stage, completely nonverbal, incontinent, no longer responding to his name. The hub for Autism, McMaster in Hamilton, determined he needed aggressive Intensive Behavioural Intervention (IBI), 40 hours a week. It would require $80,000 per year over four years to help the boy. Government in 2009 disagreed and denied funding. Wynne government reinstated the Ontario Autism Program Direct funding, but this child was on a wait list for available resources and received nothing. Subsequently, in the Ford government, the child was removed from the wait list because of age.
Penni lamented, “we went from nothing…to nothing. No support, but even worse, no hope for my son…everything is gone now.”
“The school board had provided a class for 5 kids aged 7-12 diagnosed as ASD. One teacher, 2 educational assistants. They cannot confirm there will be any funding as of September.”
Amy is a single Mom with four children. Her 9-year-old son needed 5 days a week intervention therapy. She can’t work because she needs to be on call at any time. She was receiving $70,000 per year which ends in June. She has to reapply under the new plan which is age specific and now if she qualifies, it will be an 18-month process to determine who qualifies, and because he falls outside the age restrictions, she could receive up to $5000 per year.
“I can’t afford the previous treatments any longer. I don’t know how I can help my son.”
Although it is given that the earlier a child receives qualified intervention, the greater likelihood of giving children with autism a head start in the world. It is the teen years and then young adulthood including treatment like Occupational therapy, Physiotherapy and Speech Therapy where the greatest expenses are incurred and hope for an exceptional quality of life is achieved. These services are excluded in the new funding model.
Carole, an ‘Every Child Matters’ supporter worries that support of family,
“is taken away from older kids the rights to be able to grow, be able to learn like any other kid. They have been cut out because of their age, not their needs.”
Yvonne, a mother of a 7-year-old daughter on the ASD will have her funding cut by 90% with this plan
“I have no idea how I can afford the services she needs.”
Jennifer sees the funding of her child’s needs as a ‘severance payment’.
They will “Pay us off and then you’re on your own at your child’s age of 18.”
Helen won’t qualify for any service funding,
“History is repeating itself since Premier Harris. He was the first to cut funding in this area and here we go again.
Because of exceptional support, she will forever reflect on the day her child, unable to speak for most of his life, came up to her one day and said, Merry Christmas Mom.
Sherri and her 7-year-old child with Autism doesn’t think she will likely qualify for even 5% of her former funding envelope.
“What service can you buy at that price? Lisa McLeod told us to go out and buy the kids an iPad.”
Rachel has 4 kids, the 9-year-old is diagnosed ASD just last September. She won’t qualify for any funding but needs OT, PT and Speech Therapy. She was told to apply for the Disability Tax Credit and claim that on her taxes.
“We are left on a raft in the middle of the ocean. It’s time for someone to have ‘lit the beacon’…call for help.”
Diane has had custody of her two grandsons with ASD aged 6 and 8. It took two years just for the diagnosis. Every program had its own waitlist. Same kids, multiple waitlist statistics. The problem is worse during the wait list period.
“The success from the previous program regresses before the next one begins. Even in the school boards, changes are not easily handled by the kids and with new teachers, or classroom changes, this causes regression as well. Let’s not even consider the bullying by other children that don’t tolerate the ‘different’ ones.”
Kathleen, has one child aged 6 diagnosed ASD and waiting to see if second infant is also diagnosed with similar symptoms. She has passport funding of about $8 thousand to $10 thousand a year for the eldest. She expects, at best, to qualify for less than $2 thousand under the new rules and currently has private support in her home to work around she and her husband’s work schedules. She is grateful that her family support has helped them outside of any funding deficit. She is a strong voice and went to the constituency office of M.P.P. Amy Fee in Kitchener South, herself a Mom of a son with Autism. Fee is the deputy to Minister McLeod on this portfolio at the time of the initial funding press release and should have been aware of the concerns of her constituents.
Dr. Janet McLaughlin, Associate Professor of Health Studies at Brantford Laurier, herself a Mom of a 7-year-old child with Autism, is also an expert on research in the field of Autism policy. Her son is currently receiving 20 hours of therapy a week, which will be cut off in April. She presented findings of two studies at an International Autism Symposium last fall ‘Perceived Barriers and Challenges to Navigating the Education System for Children with Autism Spectrum Disorder (ASD) in Ontario’ and ‘Autism Services in Ontario: Impacts on Family and Child Well-being’, both of which she co-authored with Laurier Professor Margaret Schneider. McLaughlin disputes the arguments being used to rationalize the funding model Ontario is proposing. She also challenges the ability for this model to meet the needs of Ontario children, especially those with severe needs. She particularly fears the unintended negative consequences of failing to provide adequate therapy to children, which could impact health, education and children’s services. She states that decisions around therapy funding allocation should be determined by clinical need, not by age or family income. She recognizes it’s critical that the proper support services and qualified providers be increased to meet needs with autism therapies properly funded.
“It’s about creating a more inclusive society where everyone can reach their potential and have their needs supported regardless of the challenges they face in their lives,”
Kari Slade is the organizer of this protest and has a son diagnosed with Autism aged 4-years-old. She did receive services from local providers but aged out early for early intervention. She is on the waitlist for ABA treatment through the Ontario Autism program but anticipates after the 18-month government attempt just announced to clear all wait lists doesn’t expect proper funding for her son’s needs. She has calculated if she qualifies for some funding, she will be in a $55 thousand deficit each year. She left a lucrative full-time job so that she and her husband could co-manage being with their son every day. He arranged, with a compassionate boss to alter his job hours to a 12 hour shift in order to cover her Tuesday Wednesday Thursday part-time professional job thanks to another understanding employer. Daycare facilities could not accommodate their needs as their son is ‘a runner’.
“If they don’t change the funding and arbitrary age restrictions, our children will not reach a full potential in life and eventually become a burden on other societal services as they become older.”
“I interviewed two school boards and selected the Separate Board at the time because they offered one-on-one Educational Assistants in Junior Kindergarten. They tell me now that can’t even assess special needs delivery for September given the lack of detail coming from the province.”
Kari is part of a new protest initiative at Queens park. The Ontario Autism Coalition is organizing a mass protest. Using an online poll on their website, OAC will judge the interest and send buses to pick up individuals from various centres across the province.
March 7, Queens Park
Your voice is needed, the kids will thank you.