[David & Lori DiSanto]

Tony,

It sounds like you're wrestling with the issues that we've been going through for the last three years.

Drop us a line (dwd@sfu.ca) and let's get together sometime.

Sincerely,
David DiSanto (Isaac's dad)

[David & Lori DiSanto]

I suppose it should come as no surprise that children who have been abused in the guise of "treatment" resent and fear the ABA that is so effective for our children.

I've known many people who have had abusive fathers and have resented male authority figures for the rest of their lives. They would have probably been better off without their fathers. I guess the viewpoint of people with autism who had been mistreated is the same. However, for someone to take their own abuse and assume it applies to everyone with a father is completely absurd.

ABA has done wonders for our son. He has learned things, can do things, can experience things way beyond a level he would have achieved without ABA.
By the way, the mentality of training our children is a pretty typical parental mindset. This applies to our NT children too. My child can't read… we'll teach her. My other child can't ride a bike… we'll teach him. My child can't respond to a question… we'll teach him.

This constant cycle of examination and teaching continues all through childhood. We would consider a parent who took no interest in the development of their typical child to be negligent. How then is it cruel to teach a child with autism these same skills?

It seems crazy that someone would suggest we abandon teaching a child because they have autism. If a child can acquire a given life skill, the parent has the responsibility to ensure they achieve it.

It is true that there comes a point where a parent needs to see that their role as a teacher is largely done and accept their children for what they've become. Nobody wants a parent who's always pushing them to change for their entire life. At every age, I will cherish who my children are and enjoy the moment. But that doesn't mean I don't have a lot to teach them. For my family, we'll slowly step out as ambitious teachers as my children age and grow in maturity.
This is true for all my children, with or without autism.

Those of you who have been abused in the past… I wish it never happened. However, it's no reason to suggest we are denying who our children are by teaching them useful skills (and they're having a ton of fun while doing it). On the contrary, it would be negligent keep from them any useful life-skills that they can acquire.

[David & Lori DiSanto]

I guess the Knowledge Network was trying to achieve "balance". I don't think the producers would like to air a show which has two families blowing their chances and one family doing the right thing.

I guess the result is not surprising. Many of us at the time of diagnosis would come across professionals who could hardly even say the "A" word. Probably most of us had a hard time finding a professional who would tell us what kind of treatment our child needed.
In hindsight, did any of us really expect that a public television show would tell people what kind of therapy is the right one when our pediatricians wouldn't?

Instead, the show tries to give a sense of "balance" between the different therapies. Unfortunately this is completely futile. There is no "balance" to be had. Lovaas-ABA is in a whole different class.

Hopefully during future airings (it goes next week again) they will at least have an addendum stating the fact that Lovaas-ABA has peer-reviewed, controlled studies supporting its effectiveness, while the other two have only un-objective parental reports.

[David & Lori DiSanto]

Hi all,

I need some advice regarding service providers.
We have some friends who are desperately wanting to start a program but are finding people are all booked up.

We've been getting incredible supervision from EAP but EAPs wait list is too long for their liking. I have heard very good things about Rachel Russell but I've heard she is on maternity leave or something like that.

Who are some other excellent local people who do a great job supervising a Lovaas-based ABA program?

If you've personally had a good experience with a particular provider then I'd love to hear from you. If you've just heard that "so-and-so" is good then I'd still like to hear.

Anyways, please drop me a line back at dwd@sfu.ca

Thanks so much,
Dave.

[David & Lori DiSanto]

Regarding Employee vs Contractor

I think most poeople running an ABA program have been faced with this confusion. There is a simple rule to determine if you are an Employer (with all the WCB obligations and such) or if you are buying contract services. The general rule is that if the worker is providing a service that can be done for multiple customers then they can be considered a contract worker. If they can only realistically work for you then you are their employer.

For example, a typical therapist is providing 2-3 hours of work, 2-3 times per week per customer. If you are one of those customers then they are really working for you on a contract basis. The important point here is that they are able to deliver these services to another customer. (They do not necessarily have to be working for someone else though, just have the option).

If you have a therapist working for you 5 days per week for 8 hours per day then the government would consider them to be your employee as there is no realistic opportunity for them to provide services to another customer. In this case you would have further obligations.

I have never known a family who has a therapist working a 40 hour work week. In every family I've ever seen the therapists can be considered consultants. You can just pay them right out of your account and they are responsible to pay their own taxes and take care of their own deductions.

Dave.

[David & Lori DiSanto]

Hi all,

I thought that I'd also relay my experience with the ASBC.

Our son was diagnosed 5 months ago, we've been doing an ABA program now for 3 months or so. Our path was a little different than most in that we already knew what we wanted to do before we got in contact with any organization. When the SLP told us there was a problem (and we wormed it out of her that she thought his behaviour was consistent with autism) we immediately started researching. We read every book in the SFU library (where they still have 3 copies of "The Empty Fortress!!") regarding childhood autism. As a result, within a couple days we knew of Lovaas' results and that we wanted to do an ABA program for our son.

Now we walked into the ASBC and became members. We got their information package, which to us had useful information in it. The most well-laid out and useful information in there was navigating the government services and hooking up with MCFD. However, the real help for us came through their library. We went into the library and said "We have a newly diagnosed child and are interested in starting an ABA program. What do you have for us?". Well we got a tremendously good reception in the library, from both librarians. I found them to be helpful, knowledgable, and directed us to a lot of very good ABA literature. We got Maurice's book through them, we got the ME book through them, and countless others with great ideas and resources. They helped a great deal in our research of ABA.

In our experience, we've really only had much contact with ASBC through the library but have been helped and encouraged through them. The library has been a terrific resource to us.

So, we've had a good experience (as I said we've only really accessed the library and not been involved with any of the "big picture" issues). However, keep in mind that we went in knowing what we wanted to do and asking for resources on it. The big problem arises when people don't know what they should do, and want someone to tell them. This wasn't our experience so I can't comment on it. I just wanted to say that in our case, having gone in knowing what we wanted, the response from ASBC was positive.

Also, I can't say enough about FEATofBC. We are presently getting $20,000 per year. Without this money we would not be able to conduct an ABA program (which has been incredibly effective so far). Someone from FEATofBC told us who to talk to at MCFD and we very quickly received our government funding. (That was before IF and the guy who we spoke to has now left MCFD so don't bother asking me who it was). FEATofBC people have had a terrific impact in the present status of our program in terms of funding, access to therapists, and answering questions about ABA.

In our case, we've navigated the issues of diagnosis, goverment funding, resources, and ABA extremely quickly and easily. Unfortunately we are in the minority in this respect. I think the reason why it went quickly was that we started out educated (thanks D&J). However, there is no reason why our experience can't be the norm.

As a side note: It's no wonder everyone is so passionate about the position they've taken. Changing position is tough. Imagine you are a parent who declined to do ABA when presented with the opportunity. For you to decide that ABA is the best therapy for children you have to admit that you had a chance to help your child, but you blew it (yes I know that you can start ABA at any age but the research shows that the biggest gains happen in the early years). That's a tough pill to swallow.
So, may I suggest that while people are pursuing pro-ABA philosophies we should all be gracious to others. One can be soft in dealing with others without having to soften ones stance.

Anways, that's my 2 cents worth.

Thanking God for ABA,
Dave

[David & Lori DiSanto]

I agree that this is confusing. However, one of the ways that a person can work on a contract basis is if they have a reasonable chance of using these skills to do the same job for someone else at the same time. This is clearly the case for our line therapists…. and many of them do just that. If you have your therapist working 8 hours per day then maybe you've got to consider them an employee. BTW, I believe that "contract worker" and "self employed" are the same thing.

The way that we're going to approach it is simply the same as the way the MCFD approached it. Before all this new stuff we've had some of our line therapists paid out of our government funding. These people just went in and signed CONTRACTS with the MCFD for that portion of their payment. The MCFD had them as contract workers… not MCFD employees even though MCFD was paying them their wages. If MCFD didn't worry about it then neither are we.

We're putting every cent towards the program.

Dave.

[David & Lori DiSanto]

Anna,

I spoke to the new manager for Vancouver/Richmond MCFD and she said that the point of setting up a seperate account was for clear documentation.
The idea being that all the money that comes into the account is from the government and all the money that goes out of the account is for treatment payments. That way when the government asks you to account for your spending you basically have to give the the bank statement to show where the money went.
If you have a seperate account for therapy payments then there's no sorting out what you spent on materials (picture cards, toys, reinforcers) from what was spent on therapists and consultants (this being what the government will pay for).

That's the scoop I got from MCFD.

As far as the other employee questions I did not address those specifically in my conversation with MCFD. However, I did look up the definition of "employee" and "contract worker". If the therapists can be defined as employees then you have to worry about maximum hours worked, vacation pay, workers comp, UIC etc. If they are working on a contract basis then you don't need to worry about any of this. Fortunately, from my reading, the therapists definitely can be grouped into the "contract worker" category in which case you basically cut them a cheque and let them worry about taxes, UIC, etc.

That's my take on it at least.

Dave

[David & Lori DiSanto]

Hello everyone,

We just got a notice from the government regarding changes in funding. Right now we have a contract with the government until the end of June for $1,800/month. The new stuff we got in the mail seems to be for a long-term contract for $1,667/month.

From what we've heard in the past there has been very little standardisation in terms of funding… many people seem to be getting different amounts. I just want to know if that $1,667 is a number that others are getting.
Is this more than most? Less?

Thanks.
Dave

Our son is 3 years old (no transition funds etc).

[David & Lori DiSanto]

Hi all,

We are now up and running with an ABA program for or son. We are looking to purchase some used learning materials. Since there's so many people here who have been doing this for years there's got to be tons of stuff sitting around peoples homes going unused.
If you have some stuff that you'd like to sell then give me an e-mail (dwd@sfu.ca) list of what you have.
To give an indication of the type of programs that we're presently doing… think non-identicle matching, and grouping… and anything beyond that level.
We're also wanting to do lots of turn-taking games… if anyone has "barnyard bingo" we'd love that, or if you have any other simple games for turntaking then we're interested.
If you have some cool reinforcers that have lost there novelty then we may just buy them off you.
We really don't know what kind of neat learning materials are out there so we're wanting to check out anything.

Thaks,
Dave.

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