Stoney Point - December 10, 2013 - As parents of a young child with autism, we have quickly learned that it is important to get our son on all the appropriate lists and wait. Today, Ontario Auditor General Bonnie Lysyk released her 2013 Annual Report and her findings are consistent with the reality that families like ours live everyday - much progress has been made in relation to autism awareness and funding, but much more is required.
There is a great deal of media coverage today about the Report and this column is meant to summarize some quick facts, help grow awareness of the disorder, and highlight the eight recommendations that were made.
The report provides the following definition of the disorder: Autism spectrum disorder (commonly known as autism) covers a range of neurological developmental disorders characterized by difficulties with social interaction and communication, repetitive behaviours and/or a range of cognitive deficits. The presence of symptoms and the degree of impairment vary from individual to individual; some people with autism have severe intellectual disabilities while others are high-functioning. This disorder is life-long and has a significant impact on families and caregivers.
Some key takeaways on the need for enhanced services include the reality that 1 in 77 children in Ontario will be diagnosed with ASD and there are currently more children with autism waiting for government-funded services than there are children receiving them. Clearly, more must be done.
In the case of our little guy, Tristan was diagnosed with Autism at the age of two and a half and will soon turn four. He is currently on the waiting list for intensive behaviour intervention (IBI) services and it is expected that he has at least another year to wait.
Research shows that children who start IBI before age four do better than those who start after age four. However, due to long wait lists for IBI services, children are not typically starting IBI until almost age seven in Ontario.
Tristan will likely receive the service sooner than most in the Province, but he will still miss the optimal four year target.
We deal with a number of spectacular therapists and service professionals here in Windsor-Essex. The need for more help is not a negative reflection on these people, simply an observation that Ontarians need many more professionals like them.
Chances are you know a child with Autism and the challenges that their family faces everyday. It is expected that we will see a provincial election in 2014 and while there are many important issues that need to be addressed in our province, I ask that you work with the families of children with autism to make sure this issue is included in those important discussions.
Below you will fine some quick facts and the recommendations from today’s report.
Quick Facts from the AG Report
• A March 2012 report by the National Epidemiologic Database for the Study of Autism in Canada indicated that the prevalence rate in southeastern Ontario was 1 in 77 in 2010, up from in 190 in 2003.
• In the 2012/13 fiscal year, transfer payments for autism services and supports comprised almost all program expenditures, and totalled approximately $182 million.
• There are more children with autism waiting for government-funded services than there are children receiving them.
• Research also indicates that children who start IBI before age four do better than those who start after age four. However, due to long wait lists for IBI services, children are not typically starting IBI until almost age 7 in Ontario.
• Since Ontario implemented its first autism program, the Ministry has increased funding for autism services and supports, from an initial investment of $14 million in 2000-01 to $182 million in 2012-13.
• Canada does not have a national strategy on autism. Ontario does not have a provincial autism strategy.
• Numerous studies indicate that early intensive intervention can significantly enhance outcomes for children with autism. As a result, early diagnosis is key. In Ontario, only those children who have been formally diagnosed with autism may apply for provincially funded autism services and supports.
• Analysis of ministry data for the period 2009 to 2012 showed that IBI service providers declined almost 1,900, or 34%, of assessed IBI applicants.
• In the five-year period ending December 2012, the IBI wait list has grown from 1,063 to 1,748.
• According to the Ministry of Education, in 2011-12 about 16,000 students in publicly funded schools had been formally identified with an autism spectrum disorder (ASD) by an Identification, Placement and Review Committee. There may be many others who have not been formally identified.
1) Facilitate the identification and diagnosis of autism in children before the age of three, monitor wait times, and ensure that clear eligibility, continuation and discharge criteria for IBI services are developed and are applied consistently.
2) To help ensure that children with autism have access to evidence-based interventions appropriate to their needs, the Ministry should consider the costs and benefits of offering additional types of therapies and interventions not currently provided, and existing interventions at various degrees of intensity.
3) To ensure that children with autism and their families receive an equitable level of service and support and to address existing inequities, the Ministry of Children and Youth Services should apply the same program guidelines to all those who meet the eligibility criteria.
4) Review the need for the use of autism spectrum disorder (ASD) consultants at many
school boards that already employ people to provide similar services, and ensure that all ASD consultants are effectively utilized, define minimum training requirements to assist existing and future educators to use applied behaviour analysis (ABA) principles in the classrooms,and assess the usefulness of various tools available to assist teachers with effective educational practices
for students with autism.
5) To help ensure that appropriate services and supports are available to persons with autism
as they prepare to leave the children and youth system, the Ministry of Children and Youth Services, in conjunction with the Ministry of Community and Social Services and the Ministry of
Education, should develop processes to assess whether individuals with autism made successful transitions, including surveys to gauge satisfaction for those who made the transitions and their families.
6) Ensure that all lead service agencies place children on the wait list for IBI services only
after determining their eligibility, and review whether its funding allocation is aligned
with service demand; periodically compare and analyze agency costs for similar programs across the province, and investigate significant variances; and review the reasonableness of the hourly rate under the direct funding option, which was set in 2006.
7) To better monitor whether service agencies are meeting key program guidelines and providing
quality services, the Ministry of Children and Youth Services should review the type of data that agencies are required to submit, and ensure key information is received and analyzed, and periodically verified through site visits.
8) Develop performance measures and targets for each of its autism services and supports
to assess their effectiveness in improving children’s outcomes; conduct periodic program evaluations, including parent satisfaction surveys, and consider conducting a long-term effectiveness study of children who received IBI services and children who were denied IBI
services; and modify services and supports as required.
To read the full report of the Ontario Auditor General as it relates to Autsim - CLICK HERE