[Julie Ng]

Hi Andrew,

I wanted to let you know that I really enjoyed reading your posts over the years.

I live in the lower mainland area so if I am available I might go and observe the meeting.

Do you think we are really closer to having the Federal government focus on ABA treatment solutions for Autism or do you think this might be more smoke and mirrors. If the former is true and the Liberals are willing to move forward with including ABA treatment in Medicare how do you think the inclusion of “intensive” ABA treatment would work? I remember early on the provincial government ran these limited and expensive EIBI programs for a small subset of kids and I got the feeling that it didn’t quite achieve any of our expectations. For us,  we privately ran a $45,000 a year, 40 hour a week, Lovaas ABA program for our child and I am having a hard time thinking that the government would be able to do the same program in a cost effective manner.

I am all for covering ABA under Medicare but after the government agrees how do you convey to them the details to effectively implement coverage for a Lovaas type ABA program using Medicare?

Regards

Joe

 

[Julie Ng]

Thanks Roxanne, Debra, Louise, Dione and Dr White and anyone else for fighting for this option for us.

I couldn't access Roxanne's link but here is the announcement from the MCFD site.

http://www2.news.gov.bc.ca/news_releases_2009-2013/2013CFD0003-000483.htm

Note: At the bottom of the bullitin it states that you have to be on the invoice payment method for 2 years before being able to use the direct funding method. That will be a pain in the <>, for the new families just starting out.

"All families must be on the invoice payment system for two years before they are eligible for the direct payment option."

Regards

Joachim

[Julie Ng]

Thanks Andrew for pointing out the "lack of access to Speech Therapy services in BC" article.

I know that the piece is about not being able to access publicly funded Speech Therapy in BC but as I read through it, I found that the costs stated were little confusing. It's a fact that each child's needs are different but in this case they are asking for a ~$72,000 per year program (Speech 4K/mth + IBI 2K/mth).

Would most parents consider that a higher end "Cadillac" program or a "run of the mill" program nowadays? For a newly diagnosed child $22K is not enough but is there a optimum amount new parents should be asking for base on X, Y and Z..etc requirements for budgeting?

The article is written in a way that makes it seems like the child is not getting any therapy although there was a short line about some form of IBI for $2,000 a month. Maybe the details got edited but is it fair to ask without stating all the facts, or costs should not matter, it should be something between the patient and physician regardless of costs?

What do you think? If you met your local MLA or MP how much would you ask for per child and how would you justify the amount?

Disclosure: My child's 14 now, he's doing well in school (thanks to "the ABA program") and I'm out of touch with the costs new parents have to deal with.

Regards

Joachim (Alex's Dad)

[Julie Ng]

Hi David,

I saw your post the other day so I'm guessing you are looking for paid gigs for Mr P. I was at Value Village the saturday looking for Halloween costumes and saw several DDA interns there shuffling goods around. Perhaps the DDA can help Mr. P secure a job somewhere.

As for unpaid gigs this summer we had Alex sucessfully volunteer at the local community center working in the day camps supporting the little ones. He had 2 volunteer jobs, the other one was working at the local park, dishing out chips, freezies, pop, & hot dogs plus doing what ever the park playground supervisor needed volunteers to do. He was very motivated and was always early for his shift. He got along great with the other crew members and was invited to the volunteer luncheon at the end of the summer.

Regards

Joachim

[Julie Ng]

Ok, Sabrina I will join you in calling B.S. on Music Therapy for Autism but I don't have any scientific evidence to discount it.

Their musictherapy.org website has some blurb about "Through peer-reviewed journals inside the profession such as the Journal of Music Therapy ….." to support their claims but it sounds kind of bogus to me.

Alex, has been "working on" playing the piano for the last 7 years and he hates it. He hasn't even made it to Grade 1 piano yet but we keep doing it purely to torture him. (Note: I like the piano and I want my kids to play.) At the begining we decided that we didn't want to "ABA the piano teachings" so we just threw him in, to sink or swim and he has been treading water ever since, maybe he would have done better if we did the ABA piano thing but why worry about the road not taken.

Are there many other ABA kdis out there trying piano? Not for Music Therapy but for Music Fun!

Joachim

[Julie Ng]

###Warning – This is a long message so you might want to sit down with a coffee or tea in your hand first. For the new parents who need/want to know how others are doing……

Alex Was Robbed?

Well, he wasn’t physically robbed it was just a figure of speech and a way to capture your attention. But before I get to the point of my title I wanted to start by commenting on a post David Chan wrote a few months ago regarding the blind contestant on Master Chef.

David, I saw the same season opener however the only thing that went through my mind when I saw the blind contestant was, “Somebody’s going to lose some fingers for higher ratings.” But, David is a very astute person and has that clear vision whereas I can only see flying body parts he see’s life’s little lessons.

We met David about 11 years ago at one of the FEAT BC meetings for WEAP where he said to us “Beg, borrow or steal, you have to get your son Lovaas ABA treatment….” Those words were more or less exactly what he said and we got his (and FEAT’s) point. We internalized it ourselves and came up with this motto “We either pay now or we will pay for the rest of ours and our children’s lives.”

With that motto in mind when we started on the Lovaas ABA road, we “begged” MCFD for help, we “borrowed” from our life savings and the stole part – I’m driving a Forest Green 1998 Ford Windstar – not the sleek Mercedes or BMW we had envisioned. The overall treatment regimen and mathematics of Lovaas ABA was a comfort to us, if you get all the right people lined up and followed the prescribed amounts of hours, a certain percentage would “recover.” Our treatment plan would always aim for 40 hours a week before Alex started school and as many hours as we could fit in when he started kindergarten. With unexpected activities, severe colds, flu’s, and holidays, by both us and the team we averaged about 30-35 hours pre-elementary and about 15-20 hours a week when he started school (there are boxes & boxes of data in the closets but we not going through all of it to get the exact numbers.)

Point #1 – Get as many Lovaas ABA hours in before school starts and after your child begins school.

When Alex started Kindergarten we could see that he was nowhere near the level of functioning compared to his peers but his teacher Ms Bird was awesome to work with and we had her for 2 years in a row. She had a very inclusive approach to everything, nurtured the children to be tolerant of one another and provided feedback to us. Her classroom motto was “be helpful not hurtful”, she was a singer and had catchy songs for her kids to learn the alphabet. Although she did not do Lovaas ABA in the classroom, Alex was getting the social component we could not offer at home. This provided us a good foundational start at school and allowed us to work on building those required academic, emotional and social skills his at home.

Point #2 – Advocate for your child like you have never advocated before. Not all principal and teachers are they same. You have to get buy in from the principal down so they can find you the right fitting (teacher) classroom for your child and supply the correct resources.

In Grade 2 it started going downhill from there. We would start the year off by asking for ABA trained aides, full time support, more/better school to home communication, extra help for Alex and end up with, part time untrained support, basically blank grades on the report cards and meaningless IEP’s which went nowhere. Don’t get us wrong the people that worked with Alex at school were wonderful people but we felt that he was not getting the help he really need to reach his full potential. So at the end of every year we would see that there would be this long list of academic issues which we were never informed of during the school year. And as Alex progress through the grades we saw the Predicted Learning Outcomes (PLO) gap widen between him and his peers. We had hoped that that process would self correct when he made the transition from the small elementary annex (Grades K-3) to the larger main school (Grades K – 7) but the main school principal still could not see our point. The feeling we got from them was, ”Yes your child has Autism so just be happy that he walks, talks and can read a little – what more do you want from us.” We could see that he was being bullied at school, his motivation to go to school was low to none, but he was still hanging in there and made some friends. I haven’t really explained this but every IEP meeting I would go in with our consultant and we would tell the school our goals for the year were, that the academic goals were to be adaptive not modified and convey to them our over arching plan of Alex graduating with a Dogwood and going on to University. So you can understand why we would go ballistic at the end of every year when the school fails to live up to whatever they are suppose to do and we have to do ABA boot camp in the summer.

Point #3 – IEP’s are super important. Make sure you plan ahead with your billion goals for the year. Get buy in from the principal down to monitor the IEP and update as frequently as humanly possible. Daily, weekly, monthly, it doesn’t matter as long the teacher/SSW does it and your child is making positive progress.

All problems comes to a boil when you see no resolution year after year and when we look back at our issues it should not have taken us so long to reach that point but we are nice people – we let things slide. We don’t like to be confrontational because we know that it could back fire and hurt our child’s school life. We like to create “mutual consensus” – what is in the best interest of the child so the people involved feel that they are part of the solution. We believe most of the teachers we worked with during those middle grades felted that we were overbearing parents who pushed their autistic child way too hard and that sentiment is really a direction from the top (principal) down. It’s the old he walks, he talks line. Near the middle to end of grade 5 we had a complete blow out where we wrote a letter to the Vancouver School superintendent listing our long list of grievance’s asking for an audience to explain our impasse with how our child is being unfairly treated at school.

Point #4 – Do it now. Don’t wait until years have passed to advocate above for your child’s right to learn if the school is not playing ball. Don’t make it a person vendetta be clinical. This is nothing personal, it is all academic.

We were passed on to the assistant superintendent for our zone at the time and we definitely felt that the Auton and Hewko cases were on their minds when were discussing our situation at school. Over the course of a few weeks/months the VSB came to the conclusion that the impasse with our school principal could not be easily resolved, the team work/communication was not there, and our consultant could not do what she needed to do to be effective for Alex. Their suggestion was to move him to a different school the following year. One where the principal listened, the staff heard and we could communicate freely with the people involved in his education. Grades 6 and 7 for Alex were really positive times in his life; with both sides working together and we saw huge strides in his academic achievements, social progress and overall attitude towards school. But when the report cards came home it was still difficult for us to believe the glowing marks he was receiving since were conditioned to low academic expectations. We had doubts because we were “complainer” parents. Was his report card being sugar coated for the sake of expediency or were they genuine marks?

Point #5 – Validate the results by reviewing your child’s school work with the teacher(s).

This year Alex just completed Grade 8 in one of the Vancouver School Board’s ARC program (Autism Resource Center) attending “HT” academic courses (regular stream classes with extra heap) and one of our main IEP goals was for Alex to maintain a B average but since the teachers were on strike it was difficult to determine with 7 different teachers. We didn’t expect him to achieve a B average but we like to aim high and provide encouragement. If you haven’t figured it out by now we will spell it out, Alex is not learning via ABA anymore he’s been learning like all the other kids in his classes but with extra help. We don’t remember exactly when this change happened it was kind gradual – we think?

Throughout the year we heard glowing reports from all of his teachers so we knew he was flourishing and doing very well. Math which was his worst subject since Kindergarten improved to a point where the teacher stopped following the HT program and gave him regular Math 8 exams (next year he’s moving onto regular Math 9.)

What we saw on the report cards reflected his high level of achievement and this really validated the work previously done in grade 6 & 7 – it would be impossible for seven teachers to pad the numbers for the sake of expediency. We calculated his GPA at the end of the year and he received a GPA of 2.83 to 2.88 for his final grade (final grade versus individual term percentage). He would have made it to a GPA of 3.0 if it was not for a final mark of C+ for Socials 8 HT.

Scrutinizing his report card we saw that Alex maintained a B in Term1, Term 2 and Term 3 for Socials how could he have ended up with a C+ for his final grade. Being “complainer parents” we emailed the teacher to inquire and the answer was that he got a C (65) for his socials final exam mark which brought him down to a C+ for the year.

Alex got rob!!!

Point #6: It is not all about the numbers, is it? It’s about learning, growing and being the best individual he can be and that is a mission Alex has glowingly accomplished for grade 8.

We haven’t really detailed what a well rounded child he is because it is not just the academics he has a ton of other activities he excels at. He won the Canadian nationals for his level in Special Olympics Figure Skating, in grade 7 his school team won the VSB Basketball Championship (with videos of him scoring), he was #1 backbencher on the school tennis team, a member of the school anime & sci fi clubs and he hates piano but still does it.

So…” Thank You Team Alex Past and Present” – you know who you are. It’s all those little small slices of time that you have worked with him in the past, building up, to create this moment. For those who don’t know who was/is part of Team Alex – ask around and like the Kevin Bacon game I’m sure there is a connection there.

We are really excited and want to share with you about his summer activities but this message is already too long. Maybe we’ll do our next installment in Sept.

Regards

Joachim and Julie

[Julie Ng]

Thanks Dave, Jen and Stella for those kinds words. Alex does amaze us every day with his personal growth.

My next question is for Sabrina or anyone else who would like to educate me.

Note: I'm a scientific dummy, I only pay the bills. Please excuse my ignorance.

So, in regards to the Autism Speaks Floortime funding vs Lovaas ABA scientific evidence post. After reading the article I thought what parent in their right mind would put their kids in a study where their is a possibility their child would recieve no effective treatment.

What type of scientific data would clinicians need to derive to validate their claims? What's the threshold?
How would they set up this experiment to back up their treatment claims of efficacy?
What kind of control group would one use?

Are all those hundreds of Floortime books just BS with nothing to backup their thoughts?

Next thought – have they done another Lovaas ABA study/experiment in the last few years since the WEAP one way back when?

Don't be shy – chime in with your two cents worth.

Regards

Joachim

[Julie Ng]

Hi Everyone,

I wanted to post this for the families with younger kids doing Lovaas ABA and for them to see how an older kid is doing.
My child is not in the ~47% group – the ones that are indistinguishable from their peers; he’s still working on reaching that level.
But, I wanted to reiterate that for my child, doing Lovaas has definitely been a positive influence in his life.

To put it into perspective he was diagnosed at Sunny Hill with Autism Disorder, Moderate Mental Handicap, & Moderate to severe language delay.
He’s been doing ABA “tutoring” since he was 4 years old so about 9 years now with the same consultant, team lead and tutor – Boh & Jen. And one of the key tenets of our program was to have him develop the self-motivation to achieve the best in whatever he was working on.

We put him into Special Olympics Skating several years ago to help him improve his balance, coordination and improve his flippy-floppy posture. The skating thing really gelled with him, he started doing the Special Olympics figure skating program and along the way the self-motivation to be the best he could kicked in.

Just week we receive a call from his skating coach for a last minute interview with Global TV, the only catch was that he had less than 24 hours to learn how to respond to the interview questions for the following day.

These were the questions that had to be mastered for the next day:

-What do you love about your sport?
-How long have you been doing it?
-What are your goals in sport?
-What have been your biggest moments and/or achievements in your sport?
-How often do you practice?
-What are some of the hardest things/biggest challenges for you in your sport?
-What are some of the things you do best in your sport?
-How has your sport experience changed since joining special Olympics?

http://www.ctvbc.ctv.ca/perrysprospects/

They don’t mention his disability during the segment. The focus is all on the skating but I hope most of you will see why we are so proud of his hard earned achievements to date.
I’m not sure if he achieved 100% answering those question but he sure tried his best.

Regards

Joachim

[Julie Ng]

Hi Nick,

It’s good to hear that you are starting a year early – you’ll need it. We have been having nothing but problems trying to work with the VSB on the following issues for our child for the last few years.

Requirements
• Increased hours of support by an ABA trained SSA for our child. (We only have half time support and they will not confirm which subjects are being supported)
• Communications manual with behavioural DATA based on standard ABA practices which reflects and includes his educational and social IEP goals. (Our datasheets are too difficult for them to fill out and they will not supply an ABA trained SSA)
• Monthly IEP updates on new goals and achievements (We’ve had very little communication from the school regarding what he is doing at school)
• Telephone communication to home immediately if there are issues at school and follow up documentation on what occurred. (He’s been bullied a few times and the principal just white washes it)
• Information regarding WHO is responsible for our child’s adaptations.
• Identify adaptations and modifications.
• Allow our behaviour consultant to be able to visit school on a monthly basis with both the regular teacher and regular SSA present. (Last year every time our consultant was present everyone was sick)

Although I can’t tell you which school to visit I can tell you which one not to attend.

Avoid Tecumseh Elementary; we have had nothing but problems with our child’s support at this school and the principal just doesn’t get it. We have taken our issues to the VSB and still do not have any agreement on when our issues will be resolved.

Email me if you need more info: pangmail (AT) shaw (DOT) ca

Regards

Joachim

[Julie Ng]

Vancouver-Kingsway NDP Candidate Don Davies supports Medicare for Autism!!!

Hi Everyone,

Please let your friends know (that live in the Vancouver-Kingsway riding) that if they support Medicare for Autism they need to vote for Don Davies of the NDP.

————-
Hi, Joachim,

New Democrats recognize that providing support for families with Autistic children has to be a bigger priority for the federal government than another corporate tax cut.

To that end our MP Peter Stoffer has introduced two Private Members' Bills:

C-211, An Act to amend the Canada Health Act (Autism Spectrum Disorder), to "ensure that the cost of Applied Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI) for autistic persons is covered by the health care insurance plan of every province."

C-212, An Act respecting a Canadian Autism Day.

So, the direct answer to your question is yes.

By the way, my youngest daughter has a developmental disability. We have been very active in the movement to secure funding and therapy for all children with disabilities of all types. Many of our associates are parents of children with autism, so we are both very aware of the issue and supportive of proper government support.

Canada's New Democrats are determined to help put the needs of Autistic children on the political map.

Sincerely,

Don.

[Author]

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