The IBI Lottery

Daniel’s life–and the lives of all those who are connected to him–changed today. He walked into IBI for the first time.

For most parents, Intensive Behaviour Intervention (IBI) is the therapy that they want their kids to get because quality peer-reviewed studies have demonstrated its effectiveness. While it does not work for everyone, the methods and outcomes have been replicated over and over again demonstrating its success. A number of studies have also shown that starting IBI as early as 2 or 3 years of age can be of greater benefit to children than waiting later.

In Ontario with children routinely being diagnosed at ages 2 or 3, early intervention is beyond the reach of most families. It is expensive therapy. I have heard some families pay between $70,000 and $100,000 a year and that is not covered by insurance. At least 26 American states require insurance companies to pay for autism therapy, but in Ontario IBI is largely delivered publicly. There are two options for parents to select when their child’s turn comes up on the waitlist: they can go with direct service (DSO) or direct funding (DFO). Direct service means that an organization contracted by the province is paid by the province to provide therapy. Direct funding means that the province provides $39 an hour for parents to find their own service. I have heard that that amount provides less than half the amount required to pay for therapy. I have also heard some parents pay even more, up to $150 per hour for service. $39 doesn’t go very far.

The waitlists vary from region, even though the province provides the funding and sets minimum standards.

For instance, in Daniel’s case, he was offered a space in IBI for June that was the direct funding option. When he moved in the summer, he moved to an area less than 2 hours drive away where he was placed higher up on the waitlist because of his diagnosis date.

Another thing that varies from one region to the next is that the measurement tools used to determine when IBI should end. A child in one region may have service stopped sooner than would have been the case if the child lived in a different region because there is no uniformity in which metric is used.

This situation all seems a little bizarre and it might even seem a little amusing if it were part of some movie or novel.

The whole strange situation came home to me last night while I was in a meeting with a group of people who want to find a way to support families of kids who do not qualify for IBI.

There were six parents in the meeting. My son was the only child who is receiving IBI. As we went around the table and talked about our kids, I felt very pleased that Daniel was starting IBI. Then it sunk in–Daniel had won the IBI lottery. I was reminded of the anxiety of waiting to find out if Daniel was going to be allowed on the waitlist for services. I hadn’t thought about that in ages and yet here were five other parents who could very well think of it all the time.

Everyone around the table was pleased to hear that Daniel was starting his therapy. All those parents have kids with needs as great as or greater than Daniel’s. Autism has become more formally known as autism spectrum disorder because there is great variation among individuals affected by it. Yet, we will provide services to only some children who fit a set of criteria that has more to do with geography in Ontario than logic it seems.

It’s difficult to rule out that chance has no impact on which child in this province receives funding for IBI.

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13 thoughts on “The IBI Lottery

  1. I grew up in Toronto and moved to Nashville, TN 13 years ago. My son has an autism diagnosis and he is now seven years old. We do not have commercial insurance coverage for ABA/IBI in this state — however, if your family’s income qualifies you for Medicaid there is certainly some coverage for this therapy. I cannot tell you how crucial ABA has been for my little boy. From the time he was 18 months old we have had this therapy for a minimum of four hours a week and at times a maximum of 12 hours. Our therapists’ fees have ranged from $50 on the low-end to $85 on the high-end, with fees not being indicative of quality of therapy. Right now we pay $1,300/mo. out of pocket, an amount equal to our mortgage and I am not sure how much longer we will be able to continue. I have long wondered if Ontario would step up and provide comprehensive coverage to families with children with autism, and then I might consider going home. At this point, with stories of waits for service and therapy being provided to the highest bidder (like almost everything else, everywhere else), I think it would be best if we stayed put here in the U.S. because we have made a new home here.

    Nothing has been as effective as ABA for my family. Everything from teaching our son to tolerate having his temperature taken to toilet training to being able to sit at a table for homeschool lessons has been taught over time by wonderful and not-so-wonderful therapists (the bad ones take longer and sometimes instill bad habits and it’s like throwing money out the window). We would have been lost without the great therapists we’ve had.

    I wish you the very best of luck with your son’s therapy. And although I know you may feel pang of guilt that your little boy has won a spot in the IBI Lottery, I am also sure you are thrilled that he is getting the best research-based therapy on the planet. My only words of advice are if you don’t feel like he is getting much out of his IBI sessions, please find another therapist as quickly as possible. Sometimes it’s just a bad fit, and there may be someone else who will better serve your little guy and your family. Good luck, and congratulations!

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    • Hello former Torontonian. I didn’t realize that Medicaid provided coverage for IBI for some families. I have only heard about the struggles of families with private insurance, so thank you for that information.

      While the waitlists can be long–and uneven–across Ontario, those who do receive provincially-funded IBI receive a minimum of 20 weeks and a maximum of 30 hours. The cruel irony is that the province talks about early intervention but children do not commonly receive IBI when they are 2 or 3 thanks to the waitlists and scarce resources. When you mentioned that you have paid from $50 to $85 per hour I was a little surprised because I haven’t heard any one in Ontario mention that they are paying less than $90 per hour here.

      I am very pleased that Daniel is starting IBI. It is going to help him soar. I will hope that we can find a way to get more children into IBI rather than having to judge who might be less successful getting through the program because we haven’t allocated enough resources.

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  2. I have heard that Southern Ontario have great wait times. It’s such a shame that there aren’t more resources available. Teachers, EAs, therapists, doctors – all in great demand. And it’s the children who suffer for it. It’s not fair. It’s not right.
    Where we live, wait times are minimal. My boys were in an Autism program within months. Speech therapy for Aaron was instanteous. Physical therapy for Aaron was only months. Adam didn’t require these services. Thankfully, we don’t require IBI, but I’ve heard that the wait time is less than a year. With raising rates of diagnosis, I don’t know if that will remain the norm. But I am grateful that my children got the resources they needed quickly enough.
    Thank you for your post. It was a reminder that not all children are as lucky – that they have to wait.
    We need to find a way to bring in more teachers and specialists. Hopefully after the election ….

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    • Once Daniel was diagnosed and put on the wait list, he received short-term therapy in a number of areas. I think, more correctly, it was short-term training for us as parents and therapy for Daniel. There are wide variations in waitlists for IBI across Ontario. I have heard that one region is under a year. The problem with finding out about the wait times, though, is that the information is not easily available. An FOI request is needed to find out what the length of the list is and how many children are put through. The number of children being diagnosed is placing pressure on the resources that the province is able to allocate, but there is also the issue of how many people are trained to provide those services. That issue may get worse because there is a growing lack of senior educators. Here’s a link to an article on that: http://www.disabilityscoop.com/2011/09/27/study-shortage-sped/14125/

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  3. My son will start IBI tomorrow. I am very happy. He was on the wait list for 2 1/2 years. I understand the “IBI Lottery” sentiment. It certainly feels that way, it should not. The rate of diagnosis is far greater than the capacity of the current support systems. After waiting for 2 1/2 years for a therapy I can only hope it works.

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    • Gary, I agree: it shouldn’t be this way. We know so much about how beneficial early intervention is and then there is the unproductive waiting. Every day our kids are on the waitlist we feel they are falling further and further behind.

      It’s been two weeks since my son started. Combined with being in a special ed class at his elementary school, he is doing great. And your son will, too. 2 1/2 years is a long time to wait, but you will see improvements very quickly.

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  4. I used to work as a therapist at one of the Regional Providers and quit in disgust. There were NUMEROUS children in the program who did not have autism but other diagnoses, such as global delay or seizure disorders, and they were taking spots from children who could have benefited from our services. Although my heart broke for the families whose children suffered these far more severe diagnoses, our intervention techniques were not beneficial to these children, and in some instances, made their medical condition worse. The Regional Providers (or at least the one I worked for) have NO ACCOUNTABILITY and merely fill out government forms that no one reads. There were even instances where they would fill out the number of hours of service provided incorrectly to imply that a child received more hours than they did, to justify the child being in the program. The Families of children diagnosed with ASD must unify and demand that the government establish an INDEPENDENT governing body that regulates both the DSO and the DFO and numerous parents must be nominated and granted a position on this board. This is the only way to have transparancy. Right now Millions of dollars are being wasted on ASD ‘Consultants’ when they should be HANDS ON working with the children, and not giving power point presentations to Educational Assistants who merely want to have something to add to their resume — ‘Attended an ASD Presentation.’

    If I had ONE suggestion to any parent out there being presented with the Sofie’s Choice of : DSO vs. DFO, I can not stress strongly enough: TAKE THE DFO! You have more control over when are where your money is spent and if you don’t like the therapist, you can FIRE THEM. With DSO, you are stuck.

    God Bless.

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    • Not to worry about spelling–I usually leave whole words out. You raise some important issues based on your experience. I don’t have much experience with the bureaucracy that administers autism services in Ontario, but I am often struck by how big the differences are from one region to the next. I hope you share your experiences with someone at Queen’s Park who can shed some light on this system. In my son’s case, DFO was not something that could be afforded. He could have started IBI months earlier if there was money for it.

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    • Hi Lisa and thanks for commenting.

      My son has moved to another region and is under the auspices of another IBI provider. I am concerned about when they will discharge him because anecdotally parents think this region discharges a lot of kids early.

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    • No, he has moved to another city and there has been no talk of discharging him. I expect we will start to hear that about this time next year.

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