[FEAT BC Admin]

This area is for discussions in general topics.

Topic

[Deleted User]

To E. Minty & Paperman
For info. re Fluency Based ABA you should contact Michael A Fabrizio, M.A., B.C.B.A.
1110 24th Ave. South
Seattle, WA 98144-3037

[Sabrina Freeman]

Hello Chat Board Members.

It's important and necessary to address several issues raised in the flurry of posts made to our discussion forum today. To save time, I'll address each topic without referring back to the original post from which it originates.

1. "Why is MCFD (Ministry for children's social services) funding Lovaas programs rather than the Ministry of Health (MOHS).

The courts are quite reticent (and rightfully so) to tread on government's prerogative to formulate and execute public policy; rather, where constitutional issues are involved, courts usually hand down a broadly constructed declaration, without micro-managing i.e., specifically ordering how government is supposed to fix a constitutional violation. So, in the Auton case, the BC Supreme Court ordered government to fund what was found to be medically necessary autism treatment, but it stopped short of telling government precisely how to do it and which Ministry should be responsible for funding the treatment (although MOHS was recommended by the judge).

Bureaucracies being the lumbering mass of inertia that they are, meaningful change is a near impossibility. The unfortunate result is that even after five judges have now handed down several landmark autism rulings, nothing has changed. It's as though no court case ever happened. The same incompetent and malevolent civil servants in Victoria (and we know them by name) are STILL there now, fighting for the Liberals instead of the NDP, on the run-up to the final hearing in the Supreme Court of Canada. This begs the question: Democracy … what Democracy? We in fact have a permanent, un-elected and harmful "government of senior bureaucrats" in BC, but most are unaware of this so far.

The Auton ruling strongly recommended that MOHS or Medicare fund medically necessary autism treatment. However, due to what is termed "judicial deference" to government and the elected legislature, BC Supreme Court stopped short of forcing the Ministry of Health to take responsibility for funding autism treatment. Nonetheless, this is EXACTLY where the court wanted responsibility for autism treatment to go – the decision is quite clear on this. So to sum up, it's the combination of judicial deference and stubborn Victoria bureaucrats that still has a social service ministry in charge of our children with all the negative consequences that entails.

2. Lack of Consultants and Consultants being too expensive

If the government fully funded every physician's prescription for the child who requires medically necessary autism treatment, then cost would not be an issue for families. In addition, more qualified consultants would come to B.C. because free markets quickly fill a vacuum.

3. Is there good, double-blind research showing that parental support is ineffective in helping parents and that supporting parents has a direct negative impact on ABA program

There is a very good between-subject design study out of Manitoba. Jocelyn et. al, demonstrates virtually no treatment benefit in either teaching day care workers about autism or teaching parents about autism. In this study, the children made no significant gains. By the way, these parents were also kept in the dark about Lovaas treatment, but that was considered 'ethical' in Canada by the rent-an-academic Health Technology Assessment office at UBC that testified against the families in Auton.

4. Board Certification: Important or Not?

Most ABA practitioners who are NOT doing Lovaas-ABA use Board Certification as the "be all and end all." These practitioners do not follow Lovaas' protocol which is the basis of the landmark 1987 study in which 47% or children were indistinguishable from their peers, 43% improved greatly, and 10% improved somewhat as compared to two control groups. These practitioners tout Board Certification because they have not been trained in, or are not using, Lovaas' protocol, which was tested in a robust between-subject study design, with 59 subjects — 19 in the experimental group, and 20 in each control group. These often-generic ABA practitioners are basing their experience on the hundreds of single-subject case designs coming out of the field of Applied Behavior Analysis. Some of these practitioners have a great amount of experience in autism. Others do not. They may know little or nothing about autism. Put simply, Board Certification is not a bad thing to have; however, it is not valid to view Board Certification as meaning that a practitioner is a) an expert in working with and programming for children with autism, and b) an expert in the protocol which Lovaas tested and retested numerous times from 1987 onward. Some families do not care whether Lovaas' protocol is followed tightly, loosely or at all. The vast majority of FEATBC parents have a markedly different perspective on this. They want the protocol that is tested, and has created the impressive results that Lovaas and colleagues have reported in peer-reviewed publications.

5. Fluency and Board Certified Behavior Analysts

There are a few parents who have chosen to not to use Lovaas' protocol, which encompasses, among other things, discrete trial training. Rather, these parents have chosen to use fluency, which is, in my opinion, a very young field in autism treatment. I am only aware of three peer-reviewed journal articles in which fluency is used (although that was six months ago and perhaps there has been another article published since). If memory serves, of the three articles, two were single-subject case designs (meaning a study with one child), and one study had a couple more children. These were not between-subject designs with a large number of children per condition. Therefore, the body of science thus far strongly indicates that 'fluency' as an autism treatment protocol is a very young sub-field. This said, science does progress and fluency may come to have meaningful scientific support in the coming years, or it may not. At this point, my opinion is that fluency is experimental. For those running fluency programs, Board Certification may be important. In contrast, for those doing Lovaas-ABA, Board Certification is in no way a prerequisite for securing a good consultant. I personally know five excellent consultants (in B.C. and in the U.S.) who are not Board Certified yet carry outstanding educational credentials and an enviable experience portfolio.

6. Fluency and FEATBC

I would suggest to those parents using fluency that they please contact the Autism Society of B.C. and have the ASBC create a Fluency Room on their Internet Discussion Forum. In this way, parents using fluency will be able to freely discuss the topic. The FEAT BC board is not the appropriate forum to discuss the fluency topic and therefore, neither is the recent thread on the importance of Board Certification.

Thank you.

Sabrina Freeman, Ph.D.
Executive Director
FEATBC

[Nancy Walton]

And for those south of the river, Paul Vigoren and I extend a warm invitation to attend our Autism Society group meetings. I have been doing ABA therapy with my son for 3 years (my son is 5) and Paul has a 16 year old involved in an ABA program. We have a diverse range of experiences with ABA, but we share common frustrations with the government.

Our meetings are in South Surrey at the Semiahmoo House society building, 15306 24th Ave. Meetings are the second Thursday of each month, 7-9 pm (although we tend to hang out until 10pm chatting). Feel free to just show up.

I would also be happy to answer any ABA type questions. I can be reached evenings and weekends at 604-538-8021. My e-mail is wiklo@shaw.ca .

Nancy Walton

PS I am fierce with beaurocrats, but soft on parents.

[Deleted User]

I am replying to Erik Minty.

My daughter is currently doing a Fluency Based Training ABA Program. Prior to this she had a Lovass based program for almost 3 years. A Fluency Based Training Program is an ABA program. She made tremendous progress in her Lovaas based ABA program and is making even better progress in her current Fluency Based Training ABA Program.

I am not an expert on Fluency Based Training ABA Programs, I am only a Mom of an autistic child who is making great progress. My daughter has come a long way and has a long way to go yet.

My best effort to describe a Fluency Based Training ABA Program is as follows. A properly designed Fluency Based Training ABA Program incorporates efficient, effective practice strategies that enable learners to achieve fluency, or true mastery of skills. When accuracy is combined with speed, it is called fluent performance. People exhibit fluency—the ability to think, speak, and act correctly and quickly, without hesitation and almost automatically. It is this speed and relative ease, not merely accuracy or correctness, that separates the fluent from the non-fluent.

The following guidelines also help describe fluency.

1. Provide sufficient practice opportunities. Fluency only comes with practice. Few training programs in any field (besides music or athletics) provide sufficient practice opportunities to attain fluency. It’s important that a Fluency Based Training ABA Program includes enough examples and exercises on critical skills and functions to practice to the point of fluency.
2. Build fluency in small chunks. Until one is fluent, it’s better to work in brief practice sessions than for extended, tiring periods. Likewise, it’s far easier to build fluency on a small set of commands or functions than to try to become fluent on a larger number at once. Therefore, it’s advisable to design brief repeated practice activities (one to five minutes each) with short breaks in between. Dysfluent skills create weak foundations for further learning.
3. Establish fluency goals. Because fluency is accuracy plus speed, you set time criteria for every skill.
4. Measure performance. Time brief practice activities and count.
5. Define fluency objectively, in terms of time limits plus accuracy levels. You can’t predict how long it will take a given individual to reach fluency. Invariably, some attain fluency faster than others, so individualized practice is best.

When working with a Lovaas based ABA program Dominique would sometimes need “maintenance” sessions as she would forget past learned skills over time. This is no longer a problem with the Fluency Based Training ABA Program. She now learns each individual skill to the point of fluency before building on that skill. The skill is solid and able to be used to build upon. I do not have the expertise to better explain the small differences between a Fluency Based Training ABA Program and a Lovaas based ABA program. My daughter has benefited a great deal from each of the two programs.

There are hundreds of reported peer review articles on Fluency Based Training ABA Programs, some available on the Internet. Perhaps you could have a look at a few of them if you are interested. I really cannot explain it any better. I just know how my daughter is doing.

I hope this reply answers your question.

Joyce Dassonville GN LLB
Family Law and Health & Disability Law

Address:# 114 – 8532 120th Street
Surrey, British Columbia,
V3W 3N5
Phone: (604) 598-8623
Fax: (604) 598-8624
Email: joyce@dassonvillelaw.ca
Web Page:www.dassonvillelaw.ca

[Stephen Paperman]

To Anonymous:

First of all, you wanna take me on, I suggest you get up the courage to sign your name.

Second of all, you say the BACB is not American. Excuse me, but it most certainly is a US institution, and one barely 5 years old according to their web site, which lists a lot of American requirements and two US states and didn’t have a word about Lovaas or autism treatment anywhere on the five pages I combed. The only name I even recognize on the board is Partington, and while I believe in Verbal Behavior as a valid technique, it’s not Lovaas either.

Second of all, I didn’t say you don’t need to meet educational standards to work with children with autism. I said you don’t need to have the blessing of the BACB. And I’ll appreciate you and the rest of the anons in the peanut gallery NOT putting words in my mouth. I have more than enough of my own, thanks very much.

You say, “Does using chemicals make me a chemist? Does gardening make me a biologist?” Actually the appropriate question would have been does gardening make you a botanist, but never mind that. The answer is of course no. And getting a piece of paper from BACB to hang on your wall may make you a behavior analyst, but it doesn’t make you a Lovaas-ABA consultant, any more than having a specialty in allergies makes you a neurosurgeon. They’re both doctors, they both have a lot of the same training, but brain surgery is a specialty, and so is Lovaas-ABA therapy.

Also, to be specific about it, that guy in Seattle who does fluency is supposed to be board certified, and so is one of those government EIBI clowns, so let’s face it, this board certification is obviously not indicative of expertise in Lovaas.

As for the rest of your comments, I won’t even bother addressing them – the more I read them, the more I figure you’re one of those Delta EIBI drones trolling here for trouble.

[Deleted User]

I am replying to Erik Minty.

My daughter is currently doing a Fluency Based Training ABA Program. Prior to this she had a Lovass based program for almost 3 years. A Fluency Based Training Program is an ABA program. There are some differences between a Lovaas ABA Program and a Fluency Based Training ABA Program, in particular a Fluency Based Training ABA Program times the trials in addition to counting the correct answers. My daughter made tremendous progress in her Lovaas based ABA program and is making even better progress in her current Fluency Based Training ABA Program.

I am not an expert on Fluency Based Training ABA Programs, I am only a Mom of an autistic child who is making great progress. My daughter has come a long way and has a long way to go yet. I do not have the expertise to accurately describe the small differences between a Fluency Based Training ABA Program and a Lovaas ABA program.

My best effort to describe a Fluency Based Training ABA Program is as follows. A properly designed Fluency Based Training ABA Program incorporates efficient, effective practice strategies that enable learners to achieve fluency, or true mastery of skills. When accuracy is combined with speed, it is called fluent performance. People exhibit fluency—the ability to think, speak, and act correctly and quickly, without hesitation and almost automatically. It is this speed and relative ease, not merely accuracy or correctness, that separates the fluent from the non-fluent.

The following guidelines also help describe fluency.

1. Provide sufficient practice opportunities. Fluency only comes with practice. Few training programs in any field (besides music or athletics) provide sufficient practice opportunities to attain fluency. It’s important that a Fluency Based Training ABA Program includes enough examples and exercises on critical skills and functions to practice to the point of fluency.
2. Build fluency in small chunks. Until one is fluent, it’s better to work in brief practice sessions than for extended, tiring periods. Likewise, it’s far easier to build fluency on a small set of commands or functions than to try to become fluent on a larger number at once. Therefore, it’s advisable to design brief repeated practice activities (one to five minutes each) with short breaks in between. Dysfluent skills create weak foundations for further learning.
3. Establish fluency goals. Because fluency is accuracy plus speed, you set time criteria for every skill.
4. Measure performance. Time brief practice activities and count.
5. Define fluency objectively, in terms of time limits plus accuracy levels. You can’t predict how long it will take a given individual to reach fluency. Invariably, some attain fluency faster than others, so individualized practice is best.

When working with a Lovaas based ABA program Dominique would sometimes need “maintenance” sessions as she would forget past learned skills over time. This is no longer a problem with the Fluency Based Training ABA Program. She now learns each individual skill to the point of fluency before building on that skill. The skill is solid and able to be used to build upon.

There are hundreds of reported peer review articles on Fluency Based Training ABA Programs, some available on the Internet. Perhaps you could have a look at a few of them if you are interested. I really cannot explain it any better. I just know how my daughter is doing.

I hope my answer has been of some help.

Joyce Dassonville GN LLB
Family Law and Health & Disability Law
Address:# 114 – 8532 120th Street
Surrey, British Columbia,
V3W 3N5
Phone: (604) 598-8623
Fax: (604) 598-8624
Email: joyce@dassonvillelaw.ca
Web Page:www.dassonvillelaw.ca

[Mike & Jean]

To all parents (particularly parents with newly diagnosed children.)

As scintillating as the FEAT chat board has been of late, there is other very useful information for parents contained elsewhere in the website such as:

Treatment and research information
Legal issues
School issues
Lobby and advocacy information
Events information

and much more…

FEAT sponsors workshops such as the upcoming Behavioural Therapist Workshop at SFU on September 27th. (see FEAT events to download a registration form.)

Other sources of information are available in our:

FEAT Parent Packages
and
FEAT video, titled, "Autism – now what do I do?"
Both are available free to any parent by request.

The FEAT discussion group meets the third Monday of each month to provide parents with a forum to discuss all topics relevant to home-based LOVAAS behavioural autism treatment programs.

Last but not least call us at 604-534-6956 or
e-mail info@featbc.org. We are always happy to talk to parents.

The opinions expressed on the chat board can be informative or unfounded. They are often provocative and sometimes in my opinion offensive…but that is the nature of an open forum and democracy. This is a place for parents to share opinions and information related to LOVAAS ABA treatment.

The characters who contribute to the chat are frequently entertaining i.e. the anonymous posters who trade barbs, or the grandstander who has found a free place and a captive audience to
address, or my personal favourite…the government service providers masquerading as treatment professionals or worse, parents.

Ah! The rich pageantry of the chat board, never a dull moment!

So – PARENTS – GET INFORMED by:

1. Check out the whole FEAT website (not just
the exciting chat board)

2. Go to the FEAT workshops. We strive to
sponsor great quality and low cost.

3. Come out to FEAT meetings and get connected
with other parents doing home-based LOVAAS
ABA programs.

4. Give us a call or send us an e-mail if you
need info.

Parents helping parents is culture of FEAT. Please remember though, opinions on the chat board are just that – opinions, albeit many are well founded. Content on any internet website is not the same as child or situation specific medical or legal advice. Believing it is the same could be foolish at best, tragic at worst.

In closing, please know that this website was designed for the dissemination and sharing of all the issues pertaining to LOVAAS ABA/DTT therapy only. Any discussion regarding any other therapy/treatment falls outside the mission and mandate of FEAT of B.C. so therefore are not appropriate for this board. Please conduct yourselves accordingly. Contact me directly if
you require further clarification.

Thanks to everyone who contributes to this forum in a positive, respectful manner.

Regards,
Jean Lewis, Director, FEAT of B.C.
jean.lewis@telus.net

[Barbara Rodrigues]

Hi Everyone:
I wanted to jump in on this thread of discussion that was started by Anon 9/17.
I wanted to address the remarks made TO Laura Romey. This is REALLY long.

Anon states : " In this instance it fascinates me as to why and how people who are stuck within the paradigm of ABA will so easily attempt to discredit anything that is not ABA,
without even discussing or OBJECTIVLLY considering the possibility. I guess that is a Paradigm for you!!!"

I disagree with you – we at FEAT choose to base our children's treatment on science-based Lovaas-type ABA. The science has documented to us what works with the data to back it. This is why those in the 'Auton' case keep winning in the courts. It is not up to US to discredit the other hokey pokey 'philosphosies of autism' – it is up to those that tell US to try 'sensory integration, Theraplay, Natural Teaching Strategies, FLoor time, FC, swimming with the dolphins, music therapy, etc.' to provide US with the science based documented evidence to back their 'claims'.

Also FEAT and this discussion board is based on Lovaas-style ABA treatment – we have chosen this for our children – this is OUR forum for this discussion – we have all been privy to the bs of SI, OT, SLP, etc. prior to finding ABA. I don't want to debate the so-called merrits of government-run hack jobs IBI program nor SI – my son as many of our children were exposed to this garbage and denied medically necessary treatment for long enough. Many of us are here after a long road of dealing with the very people you defended in your previous post – all/most of whom did nothing for our children – at best wasting precious time – at worst causing harm to them. So I make no excuses for those of us here who are 'hardened' 'sharp tongued' or 'impatient' with suggestions that we all need to be a little 'nicer'.

Anon states: "I have met and or worked with well over 100 people with
Autism and their families, and I can tell you that your
understanding of the world and what is best is greatly
skewed. I urge you, to please travel to the remote locations of BC, to the reserves (population 25 to 100) 100
KM from any other community, and talk to them about what you (again Vous, the population of the Greater Vancouver, Highly
cultured, civilized and PRIVILAGED) feel is best for their children. You will very quickly realize that because you
have NO idea what their, or their children's lives are like,your ideas of the "perfect" treatment for Autism is far from what is needed, effective or possible in those parts of the
world! "

Okay SORE spot with me – so only the highly cultured, civilized and privilaged live in Greater Vancouver and the rest of us 'yahoos' make up the remainder of the province? This sort of 'social service model' of thinking is what kept MY SON from receiving Lovaas-type ABA treatment for 10 months!!! Because some pompass SLP went to a FEAT of BC workshop of ABA in July of 1997 – yet instead of telling me about ABA (which I was unaware) asked another government hack with his nose in the trough if she should tell me (she felt she shouldn't because she felt they put down SLP -aaahhhh) His advice was NO not to tell little ole uncivilized me because those FEAT of BC parents were 'fanatics' and oh, my husband and I didn't live in a house by the lake so therefore would not be able to afford the cost of the treatment and well it was too much work for us parents. Instead they sat with me while my son stimmed in the corner and asked me how my marriage was and if my husband accepted his son (my husband being Portugues and well those Italian/Portugues men just don't accept these things don't you know?). My husband (being of sounder mind) would ask how this was to help our son – to which I would reply 'I don't know'.

Luckily for me – FEAT got a news story on BCTV in December of 1997 – and I found the number to FEAT of BC and got to speak with Sabrina and Jean and Krista and Bev.

Sabrina was instrumental in helping me find out about ABA – that's right – contrary to popular belief – Sabrina gives us parents the books/articles/science to read and let's us make up our own minds. We are not just mindless 'Sabrina groupies' following her into the yonder. While I read up on ABA, I also read about vision therapy and read other books pretaining to autism therapies. My husband and I CHOOSE ABA based on sound scientific facts and when I took the studies to Jeremy's doctor's – they also read the studies and prescribed this 'treatment' for our son.

FEAT supplies the parents with the information and the science – if the parents choose not to do ABA – we do not hunt them down and harrass them – we have neither the time nor the energy. On the other hand I personally don't want to sit down with you to discuss how little Johnny seems to be doing so well since the OT has been hanging him the doorway in that burlap sack. We at FEAT are not a 'cult' although I have been told by some in the school field that this is my religion. But that's another long story.

Also, you allude to the fact that FEAT or ABA parents are trying to deny other services to parents whom choose not to do ABA. This is the old service providers/ MCFD bureaucrats ploy to try and get the other parents of autistic kids (which outnumber ABA parents) to get in an uproar to government to help stop the individualized funding theme. The service providers have long earned a tidy living off our children's lack of treatment and increased need for 'supports'. They aren't worried about parental choice – they are worried about their jobs. FEAT doesn't care (okay I am not sure about this but I don't care) what government provides to other parents of autistic children AS LONG as our children are being provided their medically necessary autism treatment that our children's doctor's are prescribing for as long as our children need the treatment. Although I do tend to think that tax dollars should be spent on sound science based treatments.

Lastly you will find that those of here will defend Sabrina quickly and without hesitation whether she needs it or not. Her selflessness and dedication to our kids, to their fight and to their future is amazing. Not a month goes by when I don't remember all her time and her effort that she put into helping me help my little boy – and I am but just one of hundreds. Sabrina saved my son from a life in an institution. She gave me something else remarkable – she gave me my power back – to take over where she would need to leave off. I am now capable and prepared to fight and advocate for my son – To be able to fight and stand up for my child – there was a time when the system took that away from me. That is what Sabrina Freeman gave to me and it is my greatest lesson from the greatest teacher and inspiration. So yes, to many of us – Sabrina and many of the 'core' FEAT parents are our hero's – they paved the way and made a difference for all of our kids. Things today are far better than they were 5 years ago – far better. And while they are not perfect the fight is not over yet.

Hope this sheds some light on things. Thanks all to taking the time to read this. For the new parents – don't be afraid – times are easier now for you so you may be able to keep your demure outlook but the majority of us here though quick with words are all quite nice and will help when we can.

Barbara Rodrigues
Jeremy's Mom & Advocate
Jeremy (my greatest gift)

[Deleted User]

To Stephen Paperman;
you are now the one out of line.
You surely mean well but are certainly creating dis-information.
Your last post is a blight.
The Behavior Analyst Certification Board is not a 'red herring' nor is it 'American', it is recognized internationally. It was created specifically to deal with a specific and pervasive problem – that charlatans with inadequate experience and credentials were passing themselves off as ABA consultants to profit from autistic children in need of treatment. The majority of people 'board certified' work with 'special needs' populations. That is also why they became certified, to provide a standard of quality and ethics to which they are accountable. Certification can be revoked for not practising to standard. The Board was established by leaders in the discipline of Behavior Analysis most of who contribute greatly to autism treatment.

It is ironic that you say that only Lovaas ABA is appropriate for children with autism but at the same time you state that you don't need to meet the educational and practical standards necessary to be certified as a Behaviour Analyst. You say you need only study 'Lovaas'.
Does using chemicals make me a chemist?
Does gardening make me a biologist?
Not.
Then how does studying or 'doing' Lovaas make you a Behavior Analyst?
It doesn't.
Yes their are certified behavior analysts out there who didn't study to work with autistic kids and they are hardly beating down my door or yours to work with our kids.
However their are also 'ABA' or 'Lovaas ABA' consultants who are too busy treating autistic kids to get certified. Hmmn.

Now if you really want people to stop 'experimenting' on kids with autism you could encourage all the non certified ABA practitioners to take a little time off from designing and managing programs programs for kids with autism and put some time into learning their discipline well enough to earn being 'certified'. Certainly anyone delivering Lovaas would do a more effective job of it by getting a formal education in behavior analysis as well.

[Sara White]

In reply to Elaine,

Although I don't have a lot of experience working with multilingual families I do have some knowledge in the area of language acquisition in children with autism. Based on that knowledge I would not recommend that families start teaching their child in one language and then switch to a different langauge part way through. For most children with autism, that would equate to starting back at square one when the child is 5. Because most children with autism have such extreme difficulty with language acquisition I would recommend picking the one language that the family feels would be most beneficial for the child to learn in the long run based on factors mentioned earlier (e.g., Will the family be staying in Canada permanently? What is the English proficiency of the parents?, etc.).

The families should also realize that in the early stages of language acquistion the most important concept that the child is learning is that using language gets his/her needs met more effectively than the behaviors he/she has been using in the past. That is, in order for the child to learn the communicative function of language, initially ALL attempts in ALL environments need to be reinforced. If this level of reinforcement does not occur in the early stages of acquisition the child will keep falling back on the fail safe behaviors that have been effective for him/her in the past (e.g., tantruming, hand leading, etc.).

I don't know if I'm explaining myself very well, but the essential point is that the child's communication must be in a form that's understandable across all of the enviroments that he/she will be in. If the language across those environments is consistent, then the choice is easy. If not then the parents have to decide which environment will be the easiest to change.

[Author]

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