Those Funding Blues

Recently the Ontario government (Ministry of Children and Youth Services) commissioned a survey of those families waiting for intensive behavioural intervention services. The Bear has been on the list as of March 2005 (note that ‘on the list since’ means that she is still ‘on the list’ - 22 months and counting), so we received the survey. One of the questions was "If IBI services were to become available, which service option do you prefer?"

• Direct funding option (DFO)?
• Direct service option (DSO)?

Under the DSO option, the local service provider agency is assigned to the child, and is responsible for administering the child’s program, providing the Senior and Instructor therapists, and providing ongoing clinical supervision of the child’s IBI program. There is no cost to the family associated with the DSO choice.

Under the DFO option, the parents/guardians are responsible for administering the child’s program by purchasing the services of private IBI providers. The government designated agency’s contact is with the family, not the IBI provider. The family assumes all the responsibilities of an employer, although the service provider must be approved by the designated agency, in accordance with ministry guidelines, and the agency provides financial assistance to defray the cost associated with the purchase of private IBI services, at the current rate of $31 per hour. All paperwork and account reconciliations associated with the DFO option must be completed by the family on an ongoing basis. Also, funding is for IBI only, and does not cover other associated costs (e.g. training, travel, supplies, photocopying, etc).

There was a number provided for more information, and in an attempt to be a diligent parent I called it. At this time I learned the ‘other’ rules.

It turns out that the program mandates 21 hours per week of IBI under both DFO and DSO. This 21 hours is mandatory. We cannot opt in for 15, 20, or any other variation below 21 hours per week. Under the DSO option, the child must be available for instruction between the hours of 9AM and 4PM each day (um, this is significantly more than 21 hours per week, isn't it?).

I raised the point that the Bear, currently 3yrs and almost 7 months old, is supposed to start K1 in September 2007 (for the uninitiated, K1 and K2 are the new terms for Junior and Senior Kindergarten). How would she do this if she had to be available during the above-mentioned hours? The answer – parents need to make a choice as to whether to participate in the IBI program OR enroll in Kindergarten.

What?

The local agency also runs the preschool speech and language instruction in our area, and the Bear participated in a 10 week group PECS session as part of this. She thrived in these sessions. While she didn’t seem to pay any attention to the other children, she seemed to grasp many of the group concepts very well, in fact, much better than the other children. This leads me to believe that she may actually benefit considerably from mixing with other children and participating in kindergarten.

In addition, we live in a rural community, and the local school seems to be quite good. I met with the principal and the local autism coordinator last summer, and I was pleasantly surprised by how well they handle certain things. As an example, the older children are tasked with the responsibility for keeping an eye out for special needs children, and making sure that they are safe, can participate, have ‘buddies’ during recess, etc. I asked my neighbour's children about this (the youngest is currently in her last year at this school, and the eldest attended until recently), and they both confirmed this practice and that there was definitely a sense of community, acceptance and watching out and helping those children with special needs. The youngest stated that she currently spends some of her recesses playing with a younger autistic boy, and that they both enjoy this time.

The other factor is that if the Bear starts K1 with the other children then she will be part of that year’s intake. She will be no more the 'new kid' than anyone else. By Grade 1 she would be familiar with the other children and them with her - part of the scenery. If she starts Grade 1 after missing K1 and K2 she will be the 'new kid’, and may have a tougher time being accepted by those who have already known each other for two years and have previously established friendships, groups, etc. Autism may make this even more difficult. My preference is therefore that she starts K1 on day one, just like everyone else.

So, DFO seems a natural choice, right?

But, there are issues here too. The first is that requirement of 21 hours. Is it just me, or does 21 hours not divide evenly into five days (assuming that four hours and 12 minutes is not considered ‘even’)? Second, K1 and K2 are either in the morning (9 – 11:30) or afternoon (1- 3:30). Neither of those blocks of time allow for an easy integration of 21 hours of IBI, although the morning Kindergarten sessions are a better fit. Neither option fits well with a 9 to 5 work day with a lunch break. Again, 15 hours works out much better, but that is not an option if one wants to access funding. Or, one can choose to forgo Kindergarten. Or maybe play hooky one day per week?

Then comes the additional issue of costs. At a rough calc of per hour charges, 21 hours of IBI at current rates is nearly $51K per year. The DFO funding will cover nearly $30K of that, leaving a shortfall of $21K to be covered by the family (although it is less than we are currently paying for 15 hours - Wow, we get to pay less!). For many families that is still a prohibitively expensive cost, removing the DFO option from the table. This funding does not cover psychological services costs, which I’ve heard are a mandatory part of the DFO process but are not a billable part of the $31 per hour coverage. So the $21K is probably an under-estimate.

So let’s get creative here. Assuming one can afford DFO, or can negotiate with the DSO provider, can the IBI be delivered at school? That would certainly solve some of the scheduling issues for either approach. But, no, the school boards do not allow IBI or any outside agency to deliver services on school property. These are the same school boards, by the way, that may also provide zero, part time, or shared EA support instead of the full time support that may be required for a child. I can partially understand why (e.g. liability), but surely someone could find a way to cover off the issues?

So where does that leave us? If we want the DSO option (or if it is all we can afford) then we have to choose to forgo Kindergarten, resulting in missed learning, socializing and bonding opportunities that may also have consequences in Grade 1 and subsequent years. If we want the DFO option then we either forgo Kindergarten or still have significant scheduling issues, plus we have a shortfall of $21K or more per year.

I know that some out there are not fans of IBI, and will recommend forgoing it. My reply to this is that we have found IBI helpful for the Bear. I can raise the same points again about her instruction: the lack of aversives or any negative conditioning, that no attempt is made to eliminate her stims, that no attempt is made (or desired) to enable her to ‘pass as NT’, that the goal is to teach her skills to enable her to better and more independently function in the world, that part of the program involves following her lead, etc., but these points are already made here and tangentially here. I could also mention that IBI is one of the methods used to educate the Bear (we’re also fans of the ‘More than Words' approach by The Hanen Centre, which we practice at home, and Dr. Gernsbacher’s thoughts here are quite familiar to us through earlier papers and her website - I especially recommend the videos here).

But regardless of these points, we find that IBI has been helpful to the Bear and would like to continue it as part of her educational program. We have a provincial government that is theoretically committed to helping the Bear through programs that they both authorize and fund, a local support agency that recognizes the issues but has to work within the rules handed down, and a school board that may or may not fund an EA but won't let anyone else lend assistance on school property.

Why is this so difficult?