2010 was a pretty stressful year. I was starting university again for the first time in 18 years, having started my release from the Canadian Armed Forces due to medical reasons. As I readied myself to be a full-time student, I received some distressing news. First, my father had suffered a stroke, and secondly my son Alex had been diagnosed with Autism.
Of course, I had heard of Autism. But hearing that my child was being diagnosed with it was an incredibly scary proposition. I had no idea what this would entail or the impact that this would have on my son, my family, my life. Suddenly what I had read about and viewed on TV was now affecting my family and I personally. I began to wonder, what will happen to him? Will he be ok? How will this affect him down the road? What type of supports will he need? How serious was this?
Honestly, I was in free fall for the first several days. My ex-wife was an amazing source of comfort with this. Having a sibling with Autism and being a social worker, she knew more about what had to be done. I was completely lost, so I followed her lead. I would learn as time went on that I was one of the lucky ones to have someone that knew the proper steps to take.
After Dr. Crosbie diagnosed Alex, we were approved for the ABA program. To be honest, it was the first time I had heard of such a thing. It took me weeks just to remember was ABA stood for! (Applied Behavior Analysis for those not in the know)
We were informed that we would have to set ourselves up as employers with the Canada Revenue Agency and that Eastern Health would pay for our home therapist. We began the search and luckily were able to find someone who was interested. Not long after, our new home therapist, my ex-wife and I were on a three-day course that would cover the basics.
Fortunately, being a university student gave me the schedule flexibility to be there as the caregiver for Alex’s therapy. This would be the beginning of our journey.
There were a lot of positives that came out of this process. Alex responded very well to ABA. It was not long before he began to speak and come out of his shell. He went from a child who would tune everyone out and squawk for what he wanted to a sweet, outgoing, caring child who has so much to offer the world. Honestly, I could not be more proud. I will always be thankful for the support Eastern Health provided us.
That’s not to say that there were no challenges.
One of our first set backs was losing home therapists. We went through several through out the years. Many were university students, and as their schedules changed and they progressed through their degree programs, we found ourselves constantly on the look out for a new home therapist. One of the usual aspects of Autism is routine, and each time we lost a home therapist, that routine would be shaken to its core. There was a period of six months where we could not find a home therapist. This was one of the most stressful periods of my life. Given how time sensitive ABA is here in our province (we were only covered until the end of Grade 2), I worried that my son was missing opportunities to realize his full potential. What would happen if we could never find another therapist? What if Alex experienced a setback and regressed? So many questions and so much anxiety. I could hear every second on the clock as it passed.
Fortunately for us however, we managed to find someone, and Alex’s last therapist stayed with us for over three years, a blessing that few in Newfoundland Labrador get to enjoy. Between Alex’s senior therapist and our home therapists, Alex would grow into the awesome, amazing boy he is today. I am one proud Autism dad.
My university program was in Computer Science. I had been involved in technology in one form or another since I was five. Having done Computer Co-Op in High School, and then moving into two highly technical trades in the army and air force, I had a troubleshooting state of mind.
Being there for Alex’s therapy, I did notice some things.
While therapy was going great, I couldn’t help but observe the tools being used. While effective to a degree, the huge amount of paper, coupled with the decentralized records, struck me as not particularly efficient. The monthly senior therapist visit would usually be two hours of catching up on the previous month’s paperwork, with one hour of therapy progression and development. This system wasn’t anyone’s fault; it was just the way it was.
The future computer scientist in me saw potential for significant improvement.
I began to look for something that would make things better. There were many applications out there that were geared towards Autism, however I didn’t see anything that matched the solution I had in my head. Over the course of the subsequent six years, I would continue to search for a solution.
It had to be simple and easy to follow. The flow had to be smooth, with plain English, yet still adhere to ABA standards. Parents needed to be more involved with the process itself. Being able to communicate with key stake holders was key. Even more important was to provide a tool that would allow parents to carry on home therapy if a home therapist would not be available.
Watching our home therapists struggle to manage a four-inch-thick binder, trying to record therapy data while engaging with my son made me want to create new, easier-to-use tools. Instead of flipping between four different sections of the binder, everything should be on the same page. Much of the data could be entered quickly, allowing the home therapist to focus on the therapy itself.
The struggle that senior therapists go through was eye opening. With the data located at each household, the amount of driving to collect this data must be astounding. So much time is spent driving and copying notes, resulting in more time on paperwork and less time on therapy. A child’s progression through therapy is dependent upon a senior therapist’s approval, which occurs on a month by month basis. This is also dependent on whether or not the child or senior therapist is sick that day or any other event, such as bad weather, possibly delaying the appointment.
Social workers, tasked with monitoring the entire process, are there to ensure therapy hours match billing hours. Should there be a discrepancy, all therapy stops until any discrepancies are found and dealt with. Given the number of children compared to the number of social workers, this could result in a therapy stoppage amounting to weeks of lost therapy.
Health authorities, both public and private, are consistently looking for cost savings and accountability. While healthcare costs may not necessarily decrease, we find ourselves in an age where organizations such as Eastern Health need to find ways to squeeze as much out of their precious budgets as possible. Furthermore, ABA Access creates bridges between all aspects of each child’s life, ensuring all stakeholders for each child (i.e. Teachers, Guidance Counselors, Occupational Therapists, etc) can communicate with each other quickly and securely. All the while ensuring that the entire process is completely monitored to prevent any potential discrepancies that could be cause for concern by the public.
Lastly, with the data being stored at each household, it calls the therapy data integrity itself into question. Binders full of paper are a great target for house hold pets or little children looking to draw, use scissors, or just plain rip up paper for fun.
With this laundry list of problems, I proceeded to build a team that could help address these concerns while improving the overall process.
That was when ABA Access was born.
ABA Access helps get parents more involved with the therapy process, while giving therapists easy to use tools that cut down on administrative time and travel costs dramatically. Senior therapists can review and approve therapy progression anywhere at any time, allowing children to progress at a more natural rate, allowing more therapy to be completed in a shorter period.
Social workers can now complete their audits within seconds, drastically decreasing audit times and ensuring children are able to get back to their therapy as soon as possible. Health authorities realize substantial cost savings as therapists spend less time performing paperwork and more time completing therapy.
Health authorities get the accountability they desire, all the while realizing true cost savings through decreased travel and house visit times. Their employees can get more done in less time with the majority of the work being able to be completed anywhere they have access to an internet device with a browser.
Finally, with the data being centrally stored in a secure location, this ensures the data is sterile and ready for potential future research. While UCS assures that any aggregate data (no identifying information) will not be sold for marketing purposes, the potential for research at both Eastern Health and Memorial University is on a global scale.
We have recently met with several organizations, parents, therapists, and other stake holders to get their feedback on how we can make ABA Access even better. We are listening and we would love to hear from you.
If you have input and/or a story to tell, contact us at [email protected]