Parent-run movement intensifies efforts to make publicly funded autism therapy more accessible

Apr 2 2010

Hundreds of parents whose children with autism have been abandoned by the Ontario government announced today at Queen's Park that they are intensifying their efforts to make autism therapy more accessible by training in civil disobedience, peaceful protest and other more assertive forms of advocacy.

On April 21, Autism Resolution Ontario (ARO) will lead a workshop on the fundamental tactics of creative protest and non-violent direct action that parents can use to hold the legislature and the courts accountable to children with autism.

"Thousands of children with autism in this province are not getting their basic developmental needs met by current autism policies. Instead of helping our children make key gains in their early years, the government has abandoned them," says Sharon Aschaiek, mother of Jaiden, 4, who has autism, and founder of ARO, a grassroots, non-partisan, parent-run advocacy group. "We have been pushed into a corner, and have no choice but to take our advocacy activities to the next level."

ARO is working to increase access to Applied Behavior Analysis, or ABA, the most evidence-based scientifically proven autism intervention. ABA is a behaviourist teaching intervention that uses rewards and repetition to teach individuals with autism communication, socialization and other essential skills. ABA works best during children's early preschool years, and those who receive it intensively - about 30 to 40 hours a week of one-on-one instruction (referred to as Intensive Behavioural Intervention, or IBI) - can make great developmental progress.

The Ontario government's Autism Intervention Program (AIP) includes an IBI program that is meant to provide this therapy to children with autism, however, most children face tremendous obstacles in accessing it. Currently, kids wait two to five years, or longer, to receive it, and so lose out on the opportunity to maximize their development through early intervention. Currently, about 1,900 children in Ontario are waiting to receive subsidized ABA or eligibility assessments. Parents trying to pursue private ABA face a price tag of about $50,000 a year, putting it out of reach for most families.

Once children finally receive ABA, they're under constant threat of having it terminated. Currently, the provincial government is using criteria to discharge children from IBI that has been banned in the U.S. for being discriminatory and not in the best interests of children with autism. As well, the province does not sufficiently consider the insights of the child's therapeutic program director, or scientific data documenting the child's progress, when making termination decisions.

New information reveals that the "independent review" the province is pursuing of these discharge criteria is fraught with concerns about impartiality. Selected to lead this review is Louise LaRose, a former AIP clinical director who has been involved in IBI discharge decisions; who has in the past professionally collaborated with Dr. Nancy Freeman, current chair of the Benchmark Panel exploring this criteria; and, who works at the Child and Parent Resource Institute-a special needs services agency that is 100% funded by the Ministry of Children and Youth Services, which oversees the Autism Intervention Program. These three facts reflecting Ms. LaRose's strong connections to the Autism Intervention Program raise serious concerns about her ability to conduct an impartial review of the discharge criteria.

For students with autism, ABA continues to be inaccessible, even though it's widely understood to be the only way to help children with autism learn. Currently, schools provide special education services or ABA-style support, but true, individualized ABA isn't available. While training in ABA methods is available to education assistants and teachers by the ministry of education, it is not mandatory, but voluntary. And while in the U.S., students enjoy the protection of legally binding contracts guaranteeing their ABA services, Ontario students with autism have no such protection.

Autism is a brain development disorder that impairs communication and social interaction and causes repetitive non-functional behaviour. Currently, one in every 91 children is diagnosed with autism - that's up from one in 10,000 kids 30 years ago.

The Ontario government's lack of response to the growing autism epidemic in Ontario and persistent neglect of the basic developmental needs of kids with autism leave families who want to help their children with no choice but to take stronger action.

"The government's neglect of my daughter, Thais, has made it very difficult for us to independently care for our daughter's special needs due to the high cost of private ABA therapy and the lack of sufficient ABA services and supports in school," says Kiri Nesbitt, whose daughter was denied entry into the Ontario IBI program for being "too mild" in her autism--another key problem ARO is tackling. "Even convicted criminals get a second chance in our society. I want my daughter and children like her to have just one chance."