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[Barbara Rodrigues]

Hi Everyone:

Arbutus Coast is presenting the following workshop – it should be really great! Hope to see you all there.

Dr. Peter Gerhardt

Vancouver, British Columbia

Friday, 14 October, 2005

Bridges to Adulthood for Learners With Autism

Spectrum Disorders: Targeting Skills for the Next

Environment & Expanded Session on

Sexuality Issues

Bridges to Adulthood for Learners With Autism Spectrum Disorders: Targeting Skills for the Next Environment with

Expanded Session on Sexuality Issues

Dr. Gerhardt’s presentation is a compelling examination of the transition difficulties and challenges that adolescents and adults, their families & caring staff must face in order to bring about the elusive and necessary element called Quality of Life.

He discusses the real functionality of Applied Behaviour Analysis and how the failure to attend to the defining components of typical adulthood may lead to significant challenges in service development. More than merely a description of the challenges, Dr. Gerhardt takes us through the difficulties with successful strategies, plans, goals and examples.

A significant part of a child’s transition to adolescence and adulthood is sexuality. In this day-long presentation of successful strategies, plans & transition planning Dr. Gerhardt will present an expanded session on the issues of sexuality and those with Autism Spectrum Disorders.

In the world of Autism Spectrum Disorders Dr. Peter Gerhardt is regarded as one of the foremost authorities on issues of sexuality and transition to adulthood. This workshop is for every parent planning their child’s future and issues of sexuality; for school staff wanting to plan meaningful education and learning opportunities for kids with ASD in transition, and for all service providers, ministry program supervisors, and managers and staff of community living programs dealing with transition & sexual issues of their clients with Autism Spectrum Disorders.

Peter F. Gerhardt, Ed.D.

Dr. Peter Gerhardt is a Consultant whose private practice is based in Baltimore, MD. He is the author or co-author of articles and book chapters on the needs of adults with autism spectrum disorder, the school-to-work-transition process and analysis and intervention of problematic behavior. He has presented nationally and internationally on these topics. He currently serves on numerous professional advisory boards and is the Chairperson of the Scientific Council of the Organization for Autism Research (OAR) along with serving on the Board of Directors of GRASP. Previous professional positions include serving as the Executive Director Nassau Suffolk Services for Autism and an appointment as Research Asst. Professor at the Rutgers University Graduate School of Applied and Professional Psychology where he served as the Director of the Division of Transition and Adult Services at the Douglass Developmental Disabilities Center. It was in this capacity the he co-founded the Douglass Group, a social skills and support service for adults with Aspergers Disorder or High Functioning Autism. Dr. Gerhardt received his doctorate from the Rutgers University Graduate School of Education.

Dr. Peter Gerhardt

9 a.m.—4 p.m. Friday, 14 October, 2005

University of British Columbia, Student Union Bldg., Ballroom

REGISTER EARLY

Presented by—Arbutus Coast Presentations, Inc. (250) 655-4999 FAX (250) 655-4989

Bridges to Adulthood for Learners With Autism Spectrum Disorders: Targeting Skills for the Next Environment & Expanded Session on Sexuality Issues.

The following is a partial list of topics covered in Dr. Gerhardt’s presentation.

Understanding ABA as an Applied Science

Autism and the Neurotypical world

Failure to attend to the defining components of typical adulthood may lead to significant challenges to the development of services that support a positive quality of life

The universe of desirable skills

Problematic behaviours in adolescents and adults

Specific Deficits That May Predispose Individuals to Engage in Problematic Behavior

Functional Behavior Model

Inclusion and the transition process

The Middle School Years

The Journey Through High School

The Transition Process

An effective transition plan

Priorities of Instruction in Transition Programming

The Ultimate Transition Strategy

Criteria of Ultimate Functionality

Four Basic Transition Skills

Relevant to All Students

Specific Areas of Advocacy Instruction

Our Role As “Advocatees”

The Family, the Family, the Family

A special note to adolescent and adult support staff…

What do we mean by the term “SOCIAL SKILLS”?

Strategies to Promote Social Competence

Necessary, Preferred and Marginal Skills

Role Play, Social Stories or Scripts, Power Cards,

Self Monitoring

Support in the Work Place

Components of the Social Job Match

Leisure and Recreation:

The Ultimate Choice Activity

Sexuality Defined

Myths about Sexuality

The Learner with ASD and sexuality

Sexuality education should be proactive

Some guidelines for teaching sexuality

What to teach and when… some general guidelines

Goals of a comprehensive sexuality education

Promoting Positive Decision Making

Staff Training regarding sexuality issues

The Question of Personal Consent

Definitions of consent

Sexuality Education – Abuse and Exploitation

Challenges to Sexuality Education for Learners with ASD.

Case Study Discussions

Challenges to Supporting Adults

Quality of Life as a Transition Outcome

But what is meant by “Quality of Life?”

How can QOL be operationally defined?

Quality of Life is not …

Choice, control and competence in QOL

REGISTRATION FORM

(Please Print)

NAME ________________________________________

ADDRESS ________________________________________

DAY PHONE ________________________________________

FAX NUMBER ________________________________________

EMAIL ________________________________________

Credit Card Number ________________________________________

Expiry Date ________________________________________

Confirmation Preference ____Email

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For payment by cheque – Please include a cheque with a completed registration form, in the amount of $125.00 (must be received by 01 October, 2005. Late registration is $175.00). Make cheques payable to Arbutus Coast Presentations, Inc. and send to Arbutus Coast Presentations, Inc. 1691 Lands End Road, Sidney, British Columbia, V8L 5L5

If paying by credit please complete the registration form with credit card details and FAX

to (250) 655-4989

For group rates please call (250) 655-4999.

10% discount applies to previous registrants of Arbutus Coast Presentations.

Make cheques payable to Arbutus Coast Presentations, Inc. and send to Arbutus Coast Presentations, Inc. 1691 Lands End Road, Sidney, British Columbia, V8L 5L5

or visit the website http://www.arbutuscoast.com

[Barbara Rodrigues]

Hi Aileen:

I don't know the program per say – but whenever anything has the word 'sensory' in it – I run not walk from it. Sensory Integration is an old – never proven – form of therapy used for many years and continues to be used with no scientific backing. Most times it can create not decrease behaviors and it does not work within an ABA program.

I am also passionately against it because my son's life was WASTED from the age of 2-4 with this treatment (I was unaware of ABA and since we didn't have access to the Internet until until he was almost 4 – unable to find out about it). The thing is – they make the programs sound so nice and comfortable and kind and fun – but the truth is – it's just a big waste of your child's time and your money – in my opinion. They used this tactic on me for years.

You never mentioned if your granddaughter was in a program (ABA) – if so I would get your consultant to see if at such a young age – she is even ready for a preschool environment – I know many typical kids at 22 months aren't able to cope. Then if she is maybe see if there is one that has a bit of structure – set times for things etc. – maybe decide what she is capable of participating in, etc.

Another thing to remember is how our kids learn – they usually don't learn from peers (especially at the beginning of programming).

It's a shame that someone hasn't thought up a ABA parents – parent/tot time with therapists available so new parents/grandparents & little ones can get together and chat and discuss things.

I am not sure if you have ever gone to any of the ASBC support groups in your area or the FEAT support groups but that is also a great way to get info.

If you do decide to go to this program Aileen – just be sure that you have a clear outline from Riley's consultant as to what you working on and how you reinforce and what you are using extinction on as Sensory is mainly the opposite of what we do – so the SI/natural learning can be detrimental to your little one's program.

Best of luck to you.

Barbara
Jeremy's Mom

[Deleted User]

First of all I want to share this information and also if anyone knows of a similar programme nearer to where we live, which is in New Westminster.

My friend told me about a new program at Kerrisdale Community Centre called "PlayMates Playgroup" for 2-5 year old autistic children, their families and their friends. The description reads:

"This improvisational, parent-participation playgroup supports natural learning and sensory needs for autistic children. Preschoolers will develop their communication and play skills; expand their repertoire of different experiences, people and places; and make friends, be understood and have fun. Parents will learn effective strategies for better understanding their children's behaviour and communication, supporting their children's development, teaching others how to better relate to their children and will develop a network of mutual support and understanding."

There are 3 different 4-week sessions to choose from — running Wed. & Fri from 10-11 a.m. at a cost of $104 for each session. Sessions run April 6-29, May 4-27 or June 1-24. Instructor's name is Jodi Gilmore.

Meeting other parents who are facing similar challenges would probably make my 22 year old daughter feel better and learn new ways to cope, etc.

Aileen
Riley's grandma
aileen.havard@telus.com – 604-521-1822

[David Bridges]

Yayyy, Isaac & Sabrina! Thanks for your posts!

Shannon: I am confused!

Dave

[Sabrina Freeman]

Re: ABA ONLY covered in 17 states

First of all, one reporter's opinion (the Baltimore Sun) would not hold water in any court. A newspaper article is hardly solid proof that the claims made are correct.

However, let's for a moment entertain such a notion:

This information refers to insurance companies who are breaking the law and the Federal Mental Health Parity Act of 1996 makes it possible for these parents to sue. In Canada, we have no grounds to sue because we don't even have laws to protect our children!

In addition, every child from AGE 3 is entitled under the IDEA (a Federal Act) to "an appropriate education in the least restrictive environment". Thousands of American children have their ABA programs paid for by their school district (direct funding or ABA schools), and 75% of Lovaas cases prosecuted under the IDEA have won in American courts. In other words, the minute parents remind the school districts that they're breaking the law, generally they get what their children need (despite the fact that this is a health care issue, not a educational issue). Bottom line: American law provides very real protection for children with autism.

I know it may be painful for an American expat with a child with autism to admit that the U.S. is only light years ahead of us when it comes to disability rights (particularly when it comes to autism); however, there is no debate that there are several Federal American laws that do protect Americans with disabilities. Unfortunately, the same cannot be said for Canada.

We have no Federal Canadians with Disabilities Act.
We have no Federal Individuals with Disabilities Education Act.
We have no Federal Mental Health Parity Acts.

This is simply the truth and no amount of cognitive dissonance or sophistry can deny these facts.

Whatever Canadians or American expats may think about the U.S., the American construct of disability rights has much to teach Canadian policy makers.

It's time that all Canadians fight for those same disability rights that have existed south of the border for decades.

Sabrina (Miki's mom)

[Deleted User]

Full ABA coverage is required by law in only 17 states.

Exerpt Baltimore Sun:

But costs continue to prohibit many, if not most, from getting the treatment they need. Proper autistic treatments are largely the province of the well-to-do. How many working families can afford $25,000 or more a year in unreimbursed costs, especially when families often find that one parent of an affected child must stop working to manage the child's treatment regimen? A diagnosis of autism is, in effect, a catastrophic medical event for which neither the health nor educational systems of this country make provision.

Exerpt: [http://www.msnbc.msn.com/id/7012824/

And most often, the fees are not covered by health insurance.Most insurance companies have been reluctant to cover ABA therapy, calling it experimental, investigational and not medically necessary.

"'Medically unnecessary' is a difficult thing to deal with," says Lynn Hiltajczuk. "Does that mean he'll die if he doesn't have ABA? No. But it does mean he won't have a fulfilling life and be part of society. And 'experimental'? There are 30 years of studies that show it's the best thing to do."

That's why the Hiltajczuks started their national campaign to get ABA covered by insurance. Jurie is a federal employee and the group has begun their effort by targeting the federal employees health plan.

"Insurance companies love to avoid their responsibility," says Rep. Chris Smith, R-N.J., chair of the Congressional Autism Caucus. Smith is pushing insurance companies within the federal employees system to cover ABA therapy.

"We can be trend setters as to what a minimum benefit should include, and then there's the peer pressure that if federal programs covers it then why isn'•••• a benefit for everyone in corporate America?" says Smith.

After dozens of phone calls, CNBC was unable to find an insurance industry representative willing to speak on camera about ABA coverage. However, the American Managed Behavioral Health Care Association, a trade organization for mental health care coverage, said member companies have reviewed ABA and have determined that the treatment has not yet been proven to be effective.

"It's bad enough you have the emotional part, but then when you start dealing with the financial, and the fights, and the just trying to get the care for your child, it just wears you down in a way that was unimaginable before his diagnosis," says Lynn Hiltajczuk.

Exerpt:

Yet most private insurance companies claim that there is no scientific consensus about how to treat autistic disorders and, therefore, that they have no obligation to pay for treatments. Since all major treatments aim for 25 to 40 hours a week of largely one-on-one therapy, annual costs are typically $25,000 to $100,000.

Further clouding who should pay, autism and related neurological problems – pervasive development disorder (PDD) and Asperger's Syndrome – are essentially medical problems requiring educational treatment. Anecdotal evidence suggests that dietary interventions may help many children. But they are generally secondary to the drills, play sessions and other techniques used to draw out individuals emotionally, linguistically and cognitively.

[http://www.abatcc.solvethepuzzle.org/newsmanager/news_article.cgi?news_id=7

[Monika Lange]

Regarding the Ritchie's World article…
Wow, when my son's gettin' his freak on (you know, hitting himself in the head and whipping his shorts off at the public swimming pool) I hardly think he should just be "free to be me". Not to conjure up any far-out visuals, but this will only become less "cool" as he reaches adulthood. Maybe someone's been smokin' the herb a little too much, because that's the only way you could actually believe this fantastic tale that the best practice for dealing with a child's serious neurological disorder is to chill out about it. Gotta go guys, I'm feelin' a sudden urge to listen to Bob Marley. Caveat: don't sweat the small stuff… and medically necessary treatment for autism is so NOT small stuff.

[Isaac]

Regarding some recent posts to the chat-board, I would like to offer a few clarifying remarks on how Lovaas-type ABA is typically funded in the U.S. vs. Canada, in view of some misleading assertions made recently in this forum.

"… unless you are on Medicade (poverty level) the U.S. gov. does NOT cover "all" treatment in the U.S. regardless of IDEA and ADA, and their treatment and funding for medicade families is selective at best."

This perhaps may be true for physical disorders, but it's decidedly untrue where ABA treatment for American children afflicted with autism is concerned. In the U.S., parents have developed a way to utilize Medicade to fund medically necessary autism treatment for their children; they re-classify the child as an individual who is "poor" and then obtain the federal funding required for the prescribed autism treatment – i.e., Lovaas-type ABA. In short, necessary autism treatment is funded by the U.S. government and is not "selective" or available only for the rich, but rather, is quite common and widespread across the U.S., under federal funding. The situation in Canada is distressingly disparate É "please go and plead with a social worker," for your kid's physician-prescribed autism health care (could it possibly get more absurd).

To further address recent remarks to the forum:

"These [U.S.] laws change by state and county …"

Not true. The Americans with Disabilities Act (ADA) and the American Individuals with Disabilities Education Act (IDEA) are both very important U.S. federal laws designed to protect disabled persons, including children afflicted with autism. It states the obvious that U.S. federal law canÕt possibly "change by state and county," because they are, by definition … federal laws.

And onto the last remark recently posted to this forum:

"Further … what the heck does same sex have to do with ABA?

For anyone who takes the trouble to keep up with Canadian news, the answer is quite obvious. An excerpt from a recent Ottawa Citizen article helps explain for those who don't:

"Paul Martin said, 'You can't pick and choose minority rights, or the fundamental rights, that you're going to defend. You're going to defend all rights. I defend the Charter.' Picking, choosing and discriminating is exactly what Mr. Martin and Justice Minister Irwin Cotler did last June when the federal government intervened against disabled children in the Supreme Court of Canada's hearing of the Auton case, in which several were seeking to have their autistic children's core health needs brought under the umbrella of Canada's health-care system."

The full Ottawa Citizen article is below, on the same-sex Charter rights connection with autism treatment.

*******************************************************
Autistic children deserve full health-care coverage
The Ottawa Citizen
Feb 4, 2005
Page: A13
Section: News
Edition: Final

Byline: Andrew Kavchak

As the parent of a four-year-old autistic boy who was diagnosed at CHEO in 2003 and who is still on the waiting list for medically necessary treatment, I am greatly offended by the prime minister's attempt to claim the moral high ground by suggesting that same-sex marriage is a minority-rights issue.

Paul Martin said, "You can't pick and choose minority rights, or the fundamental rights, that you're going to defend. You're going to defend all rights. I defend the Charter.''

Picking, choosing and discriminating is exactly what Mr. Martin and Justice Minister Irwin Cotler did last June when the federal government intervened against disabled children in the Supreme Court of Canada's hearing of the Auton case, in which several families were seeking to have their autistic children's core health needs brought under the umbrella of Canada's health-care system.

Although the families had won in the lower courts, the government side won at the Supreme Court in November and the equality provisions of the Charter were effectively gutted. Since then, Health Minister Ujjal Dosanjh has not made a single effort to extend medicare to autistic children.

Society should be judged by how it treats those who need help. On this score, Canada fails miserably.

Last December, an Ipsos-Reid survey revealed that, despite the Supreme Court decision, 84 per cent of Canadians believe the health-care system should cover the costs of the intensive behavioural treatment required for children suffering from autism.

Why should health care for disabled children not be at least as important a priority for our government as same-sex marriage?

Andrew Kavchak,
Ottawa
*******************************************************

[Super Dad]

I have been told about a web site called "Vancouver Interventionists." It has several pages containing brief descriptions of available therapists:

http://www.geocities.com/vancouver_interventionists/interventionists.html

On the bottom of each page there is a link to the next page.

I am not crazy about the term "interventionist", but if we hire some of these people we can teach them the proper terminology.

Tony

[Barbara Rodrigues]

Quotes from the Mother in Ritchie's World –
"Julie Lafontaine, a provincial government-funded consultant who has worked with Sheri and Richie for the past three years.
"I think it's a good thing,'' says Lafontaine. "It's like an accepting thing — like let's just go with it
"There are some other families that have her approach,'' Lafontaine says. "But there are more parents out there that buy into this: 'Well, they have to be normal. They have to be like typical kids, we can't let them do bizarre behaviour in a restaurant.' Whereas Sheri is like: 'Well, this is who he is, this is what he does, and if you don't like it, don't look.'"

Did you notice that this person is a government funded consultant!!! – Does that mean that after she goes and sees Ritchie stim on videos and hit himself and tells Mom how great he’s doing– she then goes over to some unsuspecting new parent to ‘consult’ on IBI!!! Unbelievable.

Barbara

[Author]

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