[FEAT BC Admin]

In this discussion area, please feel free to share your experience in implementing A.B.A. programs in the school system. We would particularly like to hear from those parents who converted their school teams to A.B.A. We’d like to hear the nightmares as well as the success stories.

Any insight that can be shared by school-based special education assistants to help parents would also be very meaningful.

Topic

[Jovana Ivanovic]

I would like to check with you some information regarding government
funding for the treatment of autistic children.

I was told by a social worker in Burnaby MCF office, that our daughter,
now 4, was eligible for KTY program, and that we would be "helped out"
with our home ABA program using the KTY funding. However, they will
first serve a number of children who are older and who will lose their
eligibility by the fall (and for whom they will set up a "program").
Only then our daughter will start receiving some funding and only for a
6 month period. I was also told that funding that the preschool is
receiving for extra staff for her comes from KTY funds.

I would like to hear your opinion and information. I am not sure if
what I was told is reasonable and satisfactory.

Jovana, Sofija's mom

[Deleted User]

for those of you who have school age kids, have you made a decision to follow an "adapted" curriculum, which is the standard curriculum the rest of the class follows with adaptations or supports for the special needs student or a "modified" curriculum in which the student receives an academic program tailored to their abilities. i beleive my son can do the standard curriculum with adaptations but it will take nearly all of our therapy time to teach it. hard decision and now that he has hit grade 4 it really matters because this is the year they get letter grades and not just anectdotal report cards. please post any of your thoughts to this list or privately to me if you prefer at ddoyle@nwdbc.com
and, by the way, i do know how fortunate i am to have this "problem" of making a choice between the standard or modified curriculum. i am aware that for many there is no choice to make.

[David Chan]

Yes it's a scholog to be at school. Yep sometimes the man is down right high maintanence. This afternoon, the intermediate grades in our school put on a play and musical. The grade 4,5,6,7's did a bang up job. Really quite a pedestrian event for an elementry school; but you know if it shows up here there is more story to tell.

Well your boy is in the front row no less. Oy, What he's gonna do now. Gym full of Kindergardener, grade 1,2,3's prime pickings for loopy, goofy, and not to mention down right ugly spaz out tantum potential.
Well, NOTHING HAPPENED, he and his mates sang their songs, stood up sat down, watched the play. That's what happened. His mates reported to me that his was a little giddy, a little giggly, but for most part, He held it together. How about that? Indistingushable, not yet, a long ways to go yet, but surely, a step in the right direction.

It's Chinese New year soon, so just say it…
"The journey of a thousand miles begins with a single step". I think that new families that start programs have a tremendously hard time, seeing five years down the road, let alone next week. Hiring therapist, assembling therapy teams, consultants, funding and god knows the rest of "The life". Well five years on, We can say that days like today, make it a little easier. No, there are still logistics to contend with, but for the moment at least, there is direction.

The boys teacher from last year used a pharse which kind of gives us a nudge, she says,"Did you ever think that he……". I think my answer would be,"never thought, only hoped and worked towards." Please note it's hoped,not wished, because wishing is incumbent on something mytical and well, wishful and not earned from hard work.

Well all, keep up the good work. Let's work for more days, when NOTHING happens.

[David Chan]

Don't know what to say, the kid has done it again. Friday, the kid had a Science test. We ABA'd it. i.e. take the material that he had to learn- the muscles in the body, and use discrete trial to teach it. No, it was more that one session, but then again YOU wouldn't study for a test the day before would you. The jist of which is the following. The kid got 82% on his test. I gotta to tell you guys. that's a good grade PERIOD. Oh did I mention that the kid couldn't tell his colors apart before he started his program lo these five years ago. Is he a scholar, we don't know yet. Yes, he has other learning issues. You bet, there are other academic areas that he is weak in. The point is not that he got a certain grade in his class but rather that he is getting a grade at all.
Unfortunately, We didn't get a chance to go to the conference, but having been immerse in the Autism treatment world for the last while, we have heard about, gluten, dairy , B6, DMG, etc. oh yeah my personal favorite, Accupunture on the tongue; apparently it helps the kid to be more verbal, hey who knows.

The bottom line is this recognize that the wiring is different in our kids and find a method by which to teach them. Look, I like Avery would give one of whatever I've got two of to give this kid a magic bullet, so that he could be like his typical sister, or his classmates. Between now and then, How do we make it possible for him to go to a restaurant, get dressed in the morning for school. Buy something from the store. Oh yes the muscles in your body in scinece class.
Lovaas style ABA therapy; that's what. Even if the alternate "therapies" make an improvement, you still gotta teach 'em stuff. Can't take the info and skills and put it in a pill so that they learn it. So gang keep up the good work with your ABA programs.

82% does that kick bottom or what !!!!!!!!

[Jenny Obando]

To Mariah, is really a shame that our children that any child really have to go through what your child went through specially a child who can not defend himself.

I think have I been in your shoes I would still be raising hell, via news papers , TV or other channels , talk to people who would listen and scream to the ones that would not listen.

Local news papers tent to be more willing to listen specially a story of such controversy , I know it sounds terrible , but this type of incidents are great for the papers , because of the content.

I can not begin to understand how you must feel, but try to keep going ,as parents with a child with a disability there are many battles we will encounter some we will win and some we will loose, but boy we must fight them all , for our children and their right at a better life.

Jenny ( Tristen's mom)

[Jenny Obando]

To Maiah, is really a shame that our children that any child really have to go through what your child went through specially a child who can not defend himself.

I think have I been in your shoes I would still be raising hell, via news papers , TV or other channels , talk to people who would listen and scream to the ones that would not listen.

Local news papers tent to be more willing to listen specially a story of such controversy , I know it sounds terrible , but this type of incidents are great for the papers , because of the content.

I can not begin to understand how you must feel, but try to keep going ,as parents with a child with a disability there are many battles we will encounter some we will win and some we will loose, but boy we must fight them all , for our children and their right at a better life.

Jenny ( Tristen's mom)

[Deleted User]

THE CHILD WHO BROKE THE SILENCE UPDATE

IF SOMEBODY CARES…After my child was hit at school by the SEA and teacher…..

we started a formal report and investigation
the results fromthe school side are"there is no case
The SEA and teacher denied the "allegation"and are back to the classroom
My child is out of school for almost amonth now
and is not safe for him to go back to his school anymore……..
The schoolbaordisgiven the sugesstion we cahge himtoanother school where there is roomfor another child ,have offered to provide transportation because is far .from our home
I feel like a fish that is being tempted by agood
baet.
My thought about the injustice commited towards my child is that he might attend another school
and we willprovide therapy to help him heal fromthis terrible incident(AS IF HE NEEDED ANOTHER WOUND!)
but there is NO WAY THEY ARE BUYING US OUT.
although THEY DENIE IT,WE KNOW IT REALLY HAPPENED
AND ALSO SOMEBODY ELSE WILL BE NEXT!………
if Dean alonzo was your child,what would you do?
…………………Mariah

[Deleted User]

Dear Mariah,

I am saddened by what has happened to your child but the greater injustice is that perpetrated by our provincial government. Meaningful medical treatment does exist yet our government denies it to our children. Because of this our kids face frustration and confusion as a result of the effects of their disease giving rise to behaviors that challenge those around them who, sadly, often act in a manner that constitutes more harm.

I have seen Teachers damage my autistic childs self esteem by treating him in a condescending matter in front of the other typical kids and kicking him out of class for attempting to speak (out of turn), upon leaving the class they wanted his SEA to to use restraining holds to deal with his sudden aggressive behavior. His SEA would at spend least half of the day locked in a closet sized room with him because his behaviors were 'to difficult' and they were concerned ' other kids would see the way staff interacted with him and his tantrums and screaming and get disturbed'. Even though he was in grade 1 he was sent home by 12:30pm because they could not manage his day beyond that. It is not to say that school staff were mean and cruel but rather untrained and ignorant of his disease despite our attempts to educate them. Sadly we were often ignored when suggesting strategies that would help often and accused of demanding too much. It is however with much gratitude that our school and school district agreed to recognize this and cooperated with us, allowing us to bring in a school SEA to work as a therapist within our home program.

Patrick is in a home based ABA program now where he is thriving, happy, and developing rapidly across all areas of functioning and attending to his program 40 hours a week. Aggressive behaviors have vanished and he has shown he is a very social, playful, imaginative boy. The data shows irrefutably how far he has come. In time he will return to school with the skills he needs to be successful in that enviroment.

I am encouraging my school district to support the funding of ABA for all kids with autism regardless of age. Attached is my submission to the Legislative Health Committee which I am asking my school district to support.

To: The Select Standing Committee of Health
Executive Summary

This submission contains information outlining urgently needed changes to Provincial Autism Treatment policy. Within this submission is information pertaining to;
· What is autism and effective treatment for this disease.
· Why The Select Standing Committee of Health is obligated by virtue of duty to recommend immediate changes to Provincial Autism Treatment policy.
· Recommendations for implementation.
Please contact the author for further information, supporting documentation – studies, and contact information for organizations mentioned within.

Autism and treatment

Autism is a neurological illness. It is of biological origin and is defined by impairments in language, communication, and social development and by repetitive interests and behaviors. Researchers in North America are conducting several projects that focus on the genetic bases, neurobiology, and neuropsychology of autism and related disorders. Much of this research focuses on how and why behavioral treatment methods change the structure and functioning of the brain. The reason for the concentration of research in this area is due to scientific evidence that behavioral treatment methods constitute the only effective treatment model validated to date.
Scientific data supports that with competently-delivered, early, intensive intervention, a sizeable minority of autistic children are recovering from autism, using applied behavior analysis (eg Lovaas, 1987; McEachin & Lovaas, 1993; Perry & DeCarlo, 1995). Of those who do not recover, over 500 peer-reviewed scientific studies since 1971 substantiate that Applied Behavior Analysis, (ABA) is effective for building skills in children of all ages with autism in every domain: social, cognitive, communication, academic, play/motor and self-care domains, among others (eg Baglio, et al, 1996; DeMyer, Hingtgen, & Jackson, 1981) . When programs were directed by individuals with advanced training in using ABA, about 90% of children made moderate to large gains. A sizeable minority achieved normal functioning. Applied behavior analysis has also been proven as highly effective in reducing problem behaviors including self-injury, aggression, and perseveration.
Implicit in these findings is the fact that the majority of children with autism who receive effective treatment can remain in their loving homes instead of being placed in institutional or foster care. Children who receive treatment will also realize meaningful gains from services such as education as opposed to the very limited academic gains (if any) of children who are denied effective treatment opportunities.
Effective treatment not only makes sense for families, it makes sense for taxpayers who would otherwise fund residential placements. According to a cost/benefit analysis conducted by Drs. John Jacobson, James Mulick, and Gina Green, competently-delivered, early, intensive behavioral intervention can produce estimated savings per child to age 22 of about $200,000; to age 55, $1 million dollars U.S. funds.(Jacobson, Mulick & Green, in press). In addition to the cost savings there is the value of saving the functioning of a child’s mind, future, and mental health, a savings too great to quantify. And how about the value of saving a family from the trauma they experience over years of watching their autistic child fail to develop the necessary skills for independent living and typical functioning resulting in eventual placement in institutional and group home settings. The stress placed on families denied the needed funding to institute effective medical treatment, ABA, for their autistic child must be addressed immediately.
If a child had leukemia, instead of autism, no one would suggest that the disruption caused by the disease and the cost of medically necessary intensive treatment requirements imposed by the illness make would make it fair to seek alternative solutions instead of treatment so the family can have a normal life. Yet current and past government policies are saying just that. We are repeatedly denied funding for effective treatment of this disease for our son Patrick aged 7. There has never been access to publicly funded treatment through Health Services for our child for his disease of autism. This is despite the fact that knowledge of effective scientifically validated treatment utilizing (ABA) has been widely published and lobbied for by parents for over a decade. Instead what we get is a complex, cumbersome, and ineffective system of ‘care’ programs supplied by the Ministry of Children, Families (MCFD). This system of care is administered and serviced by people without training or expertise in autism. The kindest thing we can say about these “government autism services” is that they may provide a temporary relief of the frustrations a family endures attempting to manage daily life with a child suffering from a tragic neurological illness for which access to treatment is sadly denied.
As caring parents we are committed to seeking the best treatment for our child, and to demanding respect for this child’s profound worthiness. As a collective provincial community, as Canadians, and as human beings we are bound to that same commitment;

Provincial government

We have approached the provincial government for assistance in funding ABA treatment for our son, Patrick, but have so far been turned down. This is despite the fact that the provincial government was found to have violated the Canadian Constitution (the Charter of Rights and Freedoms) by refusing to fund effective autism treatment (Auton v. AGBC, July 26, 2000). We understand that the Auton litigation was commenced in 1998, after families had requested government assistance for a number of years.

Here are some of the findings made by the B.C. Supreme Court in the Auton case:
· Autism is a medical disability so severe and comprehensive that it affects all aspects of an affected person’s life;
· Without treatment, children with autism are doomed to a life of physical, emotional, social and intellectual isolation and eventual institutionalization of over 90% of untreated children;
· Autism treatment is a health issue and treatment of autism is essential;
· The appropriate treatment for autism is ABA or early intensive behavioural intervention, in fact, there are no effective competing treatments;
· It is irrefutable that many children with autism have benefited from Lovaas Autism Treatment and made substantial observable gains;
· Early intensive behavioural treatment is a medically necessary service;
· The provincial government provides no effective treatment for the medical disability of autism, either through the Ministry of Health or otherwise;
· None of the existing government services for children with autism even attempt to treat the condition of autism and were in fact “positively discredited” by one of the government’s expert witnesses;
· The Ministry for Children and Families (now Ministry of Child and Family Development) has neither the mandate nor the expertise to deliver treatment.
The province was found to have violated the Constitution by its failure to take into account the health care needs of children with autism. This discrimination is continuing, and is becoming worse through the introduction of an age limit to access to funding.

As Canadians

Canadian Charter of Rights and Freedoms, Section 15(1)
“ Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination based on race, national or ethnic origin, color, religion, sex, age, or mental or physical disability.”
(2)” Subsection (1) does not preclude any law, program, or activity that has as its object the amelioration of conditions of disadvantaged because of race, national or ethnic origin, color, religion, sex, age, or mental or physical disability.”
As Canadians we are committed to promoting the well-being of children (see, for example, the National Children’s Agenda) and the full citizenship of people with disabilities, based on the values of equality, inclusion and independence (see, for example, In Unison, the national disability agenda).
In short we cannot, in good conscience, stand by and allow provincial health care policy to continue to discriminate against children, whether it is on the basis of their diagnosis or the basis of their age.

As Human beings

Failure of government to act on behalf of children with autism would also be contrary to the UN Convention on the Rights of the Child, which has been ratified by Canada and would constitute a breach of Canada’s commitment to “undertake all appropriate legislative, administrative and other measures for the implementation of the rights in the Convention” (Article 4).
By ratifying the Convention, we have recognized that:
· A mentally disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self reliance and facilitate the child’s active participation in the community and that assistance shall be designed to ensure that the disabled child has effective access to and receives education and health care services in a manner conducive to the child’s achieving the fullest possible social integration and individual development (Article 23), and
· Children have the right to the enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health (Article 24);
By ratifying the Convention, we are committed to:
· Ensuring to the maximum extent possible the development of the child (Article 6), and
· Ensuring that no child is deprived of his or her right of access to such health care services by ensuring the provision of necessary medical assistance and health care to all children (Article 24).

Recommendations

· Immediately institute a provision for individual funding of ABA programs for families currently requesting it.
· Utilize existing models of accountability for family directed care such as “At Home Program” and palliative care programs.
· Require an accurate diagnosis and letters of support for an ABA treatment program from Family Doctor, Pediatrician, and treatment provider.
· Require evidence of treatment from involved professionals that data and progress reports are being generated.
· Require that School Districts work in a cooperative manner with ABA treatment providers and therapist team to ensure that social/education opportunities and services are available and can coexist with necessary treatment program structure.
· That post secondary institutions within our province build faculty and education programs to create ‘homegrown’ ABA expertise within our province. (The incidence of Autism is climbing throughout North America very rapidly already topping 1 in every 100 children in our community – up from 1 in every 1000 just over a decade ago – an unacknowledged health crisis amongst children)
· That health care officials build a better understanding of what constitutes an effective behavioral treatment program by contacting organizations such as; The Association for Science in Autism Treatment, the licensing board for Board Certified Behavior Analysts, Families for Early Autism Treatment of BC, and that they look to the New York State Clinical Guidelines on Autism Treatments as a source for scientific evidence of existing treatment options and efficacy.
· That consideration be given to redirecting current funds for existing ‘autism services’ directed through MCFD and the Ministry of Education to individual funding options.
We support the Health Committees courage and determination in assessing and recommending changes to Provincial Health Policy. As public figures of an elected government that emphasizes "pro-family" values we urge you to take decisive steps to ensure funding for treatment is available and that we fulfill our moral and constitutional obligation to all autistic children, regardless of age, to demand scientific accountability and credibility in their treatment.

I urge all parents to demand that school districts recognize the failure of the current system which demands that schools 'include' and 'educate' children who suffer daily from a debilitating neurological illness yet are denied access to publicly funded treatment. I ask that parents demand that school districts speak up to government and address this pathetic and discriminatory treatment of our kids. If they don't they are certainly lacking the basic moral fibre that defines us as humans.

Alex Barclay,
Powell River BC
(School District 47).

[Deleted User]

The Child Who Broke the Silence…………

Imagine the nightmare of your child being hit at school by his/her SEA or Teacher,
and him/her not able to tell you,sufering it in silence for as long as it lasts………all you see is more of his tamtrums or disrupted behavior
some sadness,maybe depression.
Well …….it happened to us and we are living it since last wednesday 14,
My child came home after a "good day at school"
broke on tears of pain and anger,told me his being hit but his SEA ,I know there's more to that than he can say……
Athough I have spoken with so many people to get advice from their experience and expertise
I still feel ……..alone in this
and it shouldn't be!
I believe Dean Alonzo broke the silence for those children that are going through the same and can't tell!.
I ask you please to support our cause
Write a coment ,aletter a note
to: mantoneta2h@yahoo.com
We start our quest on monday the 19th,an advocate and social worker are coming along…….
I believe your input on this will be very important and will help enormously if you could express us how you feel about this terrible incident hapenning ,on our so called "equal inclusive educational system 2001" where our children spend so much time with people ,that not only are not prepared or trained but worse; abusive towards them,if that assistant was ABA trained or at least have an idea what being autistic means this wouldn't happened ,of that I am sure!.
I beg you, you excuse my english and grammar faults,my first language is spanish and I am trying my best to share this with you.I REALLY APRECIATE YOUR SUPPORT! Mariah

[Darlene Pugsley]

Ask if they have a "special skills" clause. Here in NB, if a child is deaf
for example, they can require that the teacher's aide know how to sign. If
the child has a heart condition, they can require that the TA know CPR.
According to the union contract (from what I'm told) once the special skills
demand is made, the TA has sixty days to obtain the training or the school
district can find someone else who does.

I would think, with the Eldridge case in BC, that you could use the
communication disorder part of the autism diagnosis to good effect.
Education is supposed to be as universally available as medical services

Good luck.

Darlene
—– Original Message —–
From: "FeatBC Discussion Board" ;
To: ;
Sent: November 13, 2001 3:52 PM
Subject: Room Four: School Related Topics

> ————————————————————
> FeatBC Discussion Board: Room Four: School Related Topics
> ————————————————————
>
> By Cory McLaughlin (Mclaughlin) on Tuesday, November 13,
> 2001 – 03:50 pm:
>
> Hi – we need some help! Our son, Liam,
> entered kindergarten in September. We
> began asking for an ABA SEA last May and
> here we are in November, no closer but much
> more frustrated. We've been trying to work
> with Liam's school district (36 – Surrey) to
> secure a properly trained ABA SEA. Yes, they
> do exist but CUPE maintains that seniority is
> more important than the education of a child.
> We've reached the point of no return and are in
> the beginning stages of legal action. If any of
> you have successfully manoeuvred the school
> system by either threatening legal action or
> actually having to go further could you please
> contact me at 604-576-0420 or at
> gmclaug@intou
> ch.bc.ca. The great irony here
> is that both Gary and I are teachers in Surrey
> and have had access to everyone possible in
> order to state Liam's case. It just keeps
> coming back to CUPE. I'd really appreciate
> hearing from anyone with info. Thanks.

[Author]

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