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#AutismDoesntEndAtFORD

· autism,advocacy,special needs,therapy,ABA

In March 2016 the Liberal government announced a new Ontario Autism Program (OAP) with funding, however the changes included limiting Intensive Behavioural Intervention (IBI) to children between the ages of two and four. Children with autism aged five or older were deemed unqualifiedd for government-funded intensive therapy. This notion that the government was now saying that intensive treatment was not needed when you’re five or older.

Let's get real... #AutismDoesntEndAt5

Many parents of children and youth with autism railed at the Ontario legislature to demand that the province reverse the decision to stop funding treatment for children age five and older. This short-sighted decision riled up many advocates across Ontario, thus sharing their voices in hopes the Liberal government would correct the course of action, and acknowledge the mistake they made. By June 2016, the former Premier, Kathleen Wynne backed away from this controversial age limit she imposed earlier, and introduced a new program for therapy funding:

  • A choice of direct funding or immediate and continuous access to applied behaviour analysis (ABA) services and supports for children five and over who were on the intensive behavioural intervention (IBI) waitlist, to provide access to continuous service until children are able to enter the new program next year.

  • Strengthened autism supports in schools to help children transition to and continue in full-time school.

  • Increased access to diagnostic assessments to allow for earlier diagnosis and treatment.

  • Greater access to information and direct supports for families to help them transition to the new program.

Although this new program provided all children, regardless of age, with more flexible services at a level of intensity that met each child’s individual needs, I was among many families still looking for a clear statement. Like many Ontario families of children and youth with autism, there continued to be a lot of skepticism with the upcoming OAP. Many families like ours were (or still are) paying for IBI therapy out of their own pocket. Check out CBC’s article on how Ontario parents scramble to pay for autism therapy after government cuts.

Without hesitation, I decided to share my voice by writing letters to the Liberal government, the former Minister of Children & Youth Services, and my local MPP.

In a blink of an eye, a year had passed. In May 2018, the former Premier Kathleen Wynne made a commitment to invest $62 million in new funding for the OAP. Bella is currently one of the fortunate candidates to benefit from this program as she has been receiving intensive behavioural intervention (IBI) therapy for the last three years. For four days a week, Bella receives over 30 hours of IBI therapy and is learning to build a variety of communication, social cognitive and adaptive skills.

As an educator in the Ontario public education system, I understand how collaborative support systems can help a child with autism succeed. However as a parent and advocate of a child with complex needs, I feel that public education will never be able to provide the personalized and intensive programming that Bella requires. The reality is, many children and youth with autism have unmet educational needs. Reasons may include: unqualified teachers in the field of special education, lack of educational supports and services to promote change in practices, policies and behaviours, and the low ratio for educational assistants. Either way, I’ve learned that it is a continuous and exhausting battle when it comes to ensuring quality programming for my daughter with autism.

So what, now what?

Today, the current waitlist for the OAP is now close to 30,000. As a result, the current Progressive Conservative government has geared up to make changes to the program. They want to please the waitlist numbers, however leaving thousands of vulnerable children and youth without appropriate intensive therapy support, let alone address the repercussions in the regression of their physical and mental well being. Children and youth like Bella who are currently receiving funding for individualized programming will soon be cut adrift.

Today for my blog post I will be interviewing Nancy Marchese. Nancy is a Board Certified Behaviour Analyst (BCBA) and Clinical Psychologist. She has completed her Master of Arts in Psychology with a specialization in Behaviour Analysis at the University of Nevada, Reno. Nancy has published research in the flagship Journal of Applied Behaviour Analysis (JABA) and has presented at both provincial and international conferences. Nancy has appeared as a guest on CBC News Toronto, CityTV, CP24, CHCH news, Daytime Toronto, Daytime York, In the Know, NewsTalk1010, and Hamilton Life as an authority on autism. She is the 2015 recipient of the “Excellence in the Contribution to Behaviour Analysis” award presented by the Ontario Association of the Behaviour Analysts (ONTABA). Nancy has been invited to share her expertise by conducting workshops for the Geneva Centre, Kerry’s Place, and Autism Ontario. Nancy is the executive director and founder of Breakthrough Autism, a private clinic offering intensive behavioural intervention treatment to customized programs for children and youth with autism.

MOM BEHIND THE LABEL: Can you describe what Intensive Behavioural Intervention (IBI) therapy is, and how it supports children and youth with autism?

NANCY: IBI or Comprehensive ABA are intensive programs in which children work on a range of goals at the same time (e.g., attending, communication, imitation, play, self-care skills) from 25 to 40 hours per week. This type of program uses a variety of different techniques based on the science of behavior analysis. For example, prompting, reinforcement, and modelling are ABA techniques that can help children learn. It’s important to keep in mind that since autism is a spectrum disorder not all kids need IBI or Comprehensive ABA. Some children with ASD need more intensive ABA whereas others can benefit from a Focused, less intensive, ABA program.

MOM BEHIND THE LABEL: Our family has been part of the Breakthrough Autism Team for 3 years. My husband and I have seen huge progress in Bella’s communication, academics, and life skills. Can you describe how your centre-based programming supports the individualized needs of your clients?

NANCY: Customizing our programs to meet each child’s individualized needs is our first priority when any child starts at our centre. Our supervisory team has extensive expertise in behaviour analysis that allows us to carefully assess each child’s strengths and needs. Then, we work closely with each family to map out a customized treatment plan for their child. This treatment plan is based on our knowledge of the client, parent goals, and the science of behaviour analysis.

MOM BEHIND THE LABEL: Families who are currently receiving funding like ours are scared of what the Ford government is planning to do with the overhaul of the OAP. There are also many families who are on the OAP wait list, and not receiving any funding at all. On February 6th 2018, the Ford government announced that Ontario will be improving access to services and supports so that more families of children and youth with autism can receive services. To read more, click here.

The Ford government says that funding will not be cut, but redistributed. What does this mean for children with autism? Will all children with autism get what they need? Can you share your insight on this statement?

NANCY: This announcement means that funding will be distributed across children. This change doesn’t take into consideration that autism is a spectrum disorder and each child has different needs. Given that there is a fixed budget for this program, this means that some children may get too much funding while others will not get enough. That is, for some families, especially those who have children on the severe end of the spectrum, they will not be able to access IBI or Comprehensive ABA.

MOM BEHIND THE LABEL: You have always been a strong advocate for families who have children and youth with autism. Can you share your expertise on what the Ford government is not considering?

NANCY: The most fiscally responsible way to spend taxpayers dollars is to consider the needs of each child with autism. This is the only way to get best outcomes while ensuring that the proper amount of funds go to those who need it. When government offers scientifically proven treatments everyone wins. We know that without ABA treatment the increased costs of supporting an individual with ASD can be from 2-5.5 million dollars. Individuals with ASD who don’t receive ABA may require increase healthcare support (e.g., inpatient hospitalization), social services (e.g., out of home placement, reliance on social assistance), and more services through education (e.g., increased classroom supports). It’s also important to keep in mind that there are increased indirect costs such as parents not being able to work as many hours or not even working at all because they can care for their children. Many studies have found that the costs of ABA can be recovered through saving from reduced healthcare and education costs. So, in the end, this announcement will not only hurt the children with ASD and their families, it will end up costing taxpayers even more money.

MOM BEHIND THE LABEL: What will this mean for the children on the waitlist?

NANCY: Unfortunately, for most children on the waitlist, they will not be able to access scientifically support treatment either. That is, the funding that most families will receive under this new program will be nowhere near enough to cover the costs to help them achieve their goals.

MOM BEHIND THE LABEL: What will this announcement mean for schools?

NANCY: This announcement will have a tremendously negative impact on schools. In the short term, this will create a crisis situation in the schools. Children who are currently receiving services will begin going back to school in April 2019 as their current funding expires for their ABA program. I don’t believe that schools are equipped with adequate resources to deal with the increased enrolment unexpectedly in the middle of the spring semester. This quick transition is putting children with autism, other children in the classrooms, teachers, and EAs all in potentially harmful situations. I’m terribly worried for everyone given this rush decision.

In the long term, without access to ABA, children with ASD will be going to school without the benefit of core skills that can help them transition successfully to school. ABA programs are specially designed to help children learn skills such as early readiness-to-learn, communication, social, and self-care skills. ABA programs also help to reduce behaviours that interfere with learning. When children have access to ABA, this helps to build a critical foundation that leads to success in school.

Thank you Nancy for taking the time to contribute to this blog post. If you are a parent, caregiver, educator and/or advocate for children and youth with autism, I urge you to reach out to our Premier Doug Ford and Minister of Children and Youth Services, Lisa MacLeod to share your voice. Now is not the time to be quiet. Now is our time to be mouthy, and get as loud as we need to be heard. Please support our autism community, and consider using the following tags:

@fordnation @MacLeodLisa @timporter_ONT

#AutismDoesntEndAtFORD #AutismDoesntEndAt5 #OAP #ONpoli #ABA #IBI

Dear Premier Doug Ford and Minister Lisa MacLeod,

I am one of the many parents across Ontario who has been devastated by the recent announcement with the revamp of the Ontario Autism Program. I am urging you to look beyond your objective of clearing the waitlists and see that each and every child who lives with autism were not only born with autism, but will also grow into adulthood with autism.

Putting money into clearing the waitlist is not the answer. This completely disregards the children themselves. As each individual has unique needs; support for services and resources need to be personalized. My daughter is currently 9 years old, but cognitively at a 12 month old. She is non verbal and relies on us for feeding, dressing and toileting. With only 3 years of intensive behavioural intervention therapy, she is beginning to communicate with an augmentative device and learn basic life skills. She relies on this therapy to support her independence.

This new OAP takes away the effectiveness of the services that the government is investing in. By diluting the funding, you have essentially minimized the proven success of the services that have thus far been provided to the children. You have to look at the science behind the evidence-based intervention to understand that intensive and consistent programming is most likely to produce positive behaviour changes and improvements.

Autism is not a sickness that can be cured with a cap of a dollar amount. I urge you to reach out to families like mine and get to know who we are, and what we need. My daughter is more than just a number waiting to be paid out.

Sincerely,

Mother who is raising a child with autism.

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