The Alliance for Families with Autism

AUTISM TOWN HALL MEETING-Oct 28 09-post-poned stay tuned for updates

2009-10-03T19:49:00.000-07:00

AUTISM TOWN HALL MEETING WITH
MINISTER MATTHEWS AND MINISTER WYNNE
WEDNESDAY OCTOBER 28, 2009

The Alliance for Families with Autism (AFA) is pleased to announce we are hosting a Town Hall Meeting regarding the issues surrounding autism on WEDNESDAY, OCTOBER 28, 2009. The meeting will include Ministers from the Ministry of Children and Youth Services (MCYS) as well as the Ministry of Education (MEDU).

In attendance will be Hon. Deb Matthews, MCYS , Hon. Kathleen Wynne, MEDU, Hon. Madeleine Meilleur, MCSS (invited).
All parents, families and interested individuals are welcome to attend this event. This is an opportunity for the autism community to voice their concerns with regards to current programs and receive an update from both Ministers regarding the direction of their ministries for the future.

The Alliance for Families with Autism (AFA) is a volunteer organization. Our mission is improving the lives of children and adults affected by autism. We continue to provide information to all stakeholders.

TIME 6:45-8:45

WHERE Boardroom and Atrium
Peel DSB
HJA Brown Education Centre
5650 Hurontario Street
Mississauga, Ontario, L5R 1C6
(south west corner of Hwy. 10 and
Matheson Blvd
(see map)
http://maps.google.ca/maps?oe=utf-8&rls=org.mozilla:en-US:official&client=firefox-a&um=1&ie=UTF-8&cid=0,0,9444379875651215249&fb=1&hnear=5650+Hurontario+Street++++++++++++++++++++++++Mississauga,+Ontario,+L5R+1C6&gl=ca&daddr=5650+Hurontario+Street,+Mississauga,+ON+L5R+1C6&geocode=12112326905998958707,43.618781,-79.669515&ei=cQ3ISv2NMcKzlAfG7bGSAw&sa=X&oi=local_result&ct=directions-to&resnum=1

For more information please contact:

Lisa Prasuhn (905) 729-4029 lisa.prasuhn@sympatico.ca
Trish Kitching (705) 222-9432 ktchmeifucan2002@yahoo.ca
Pat La Londe (613) 372-5580 palalonde21@aol.com

TOWN HALL ANNOUNCED!

2009-10-03T19:44:00.000-07:00

STAY TUNED

Oct 28th.

Autism BIG TENT MEETING-UPDATE

2009-08-06T19:34:00.001-07:00

A message about the Big Tent Meeting on Saturday..... for those of you outside the GTA who would like to participate:

Subject: Great News about our Meeting!

Today has been a busy day of pre-meeting preparation. We're happy to announce the following:

1. We WILL have an internet connection at the meeting, which will allow us to post a live blog about the event. We're also working on putting together a chat feature that may allow those of you who are out of town to communicate with us while the meeting unfolds. Here's the URL for the blog site (you'll also be able to find the link at the OAC website)

http://www.facebook.com/l/;thebigtentmeeting.blogspot.com/

2. We received confirmation today that Suzanne Lanthier, Executive Director of Autism Speaks Canada, will be joining us at the meeting. For those of you interested in lobbying at the federal level, this will be a great opportunity to hear about the plans that Autism Speaks is developing for more advocacy on the national scene.

3. We also have representatives who will be attending from a variety of other organizations: Autism Ontario, the Alliance for Families with Autism, and Autism Resolution Ontario. We're really excited by the wide-cross section of advocates who will be with us on Saturday.

4. Thanks to a generous contribution from Autism Speaks, we will be able to provide coffee and lunch for up to 50 participants. It's a simple box lunch--small sandwich, chips and a drink, but it allows us to keep everyone on site, which will save us a lot of time. As a result, we're tightening up the agenda so that we can end earlier. (See our website for the revised agenda)

5. We've had over 60 responses to our pre-meeting survey, and it's telling us that there is a very high level of consensus on the goals and objectives we should be working towards. Thanks very much to all of you who have taken the time to complete it. For those of you who haven't had a chance, we'd really appreciate it if you could try to do so before tomorrow night. Here's the survey link, one more time:

http://www.facebook.com/l/;www.surveymonkey.com/Home_Landing.aspx?sm=BpzUk%2bAef8VfWgkjHpJb0Q%3d%3d

Please remember to RSVP to this event if you haven't done so already. We look forward to seeing lots of you on Saturday, and we hope to chat on-line with those of you joining us from far away.

Peace,

Bruce & Laura

2008 Spring UPDATE

2008-03-19T19:29:00.000-07:00

The Alliance for Families with Autism (AFA) – SPRING UPDATE 2008

Last night’s event was a great success! We appreciate all of the families that attended the Town Hall Meeting with Minister Wynne and Minister Matthews. We had over 150 people attend this unprecedented event! It was a unique evening that allowed families the opportunity to give their direct input to the Ministers. The event ran an hour overtime and did not end until nearly 9:30 pm. We were extremely pleased that the Ministers gave the extra time to allow the majority of parents the opportunity to address them and give their input. We have received numerous positive comments about the Town Hall Meeting and we are hopeful that this will be an annual event for the autism community.

The Alliance for Families with Autism (AFA) recorded last night’s event. For those of you who were unable to attend or if you are interested in purchasing a copy of the DVD, please contact our executive Lisa Prasuhn at lisa.prasuhn@sympatico.ca – the cost of the DVD covers the expenses for shipping and also gives the AFA an opportunity to fundraise. Although some other recordings were taking place last night, all future events will only be recorded by the AFA. This does assist us in paying for some of our out of pocket expenses including photocopying, etc. The Alliance for Families with Autism (AFA) appreciates your understanding with regards to this matter and wants to continue to bring the community worthwhile events.

Last night’s event gave us the opportunity to meet a number of families in the autism community. We appreciate families traveled from areas across the province including Hamilton , Haliburton, Peterborough , Kitchener , Barrie , Sudbury , Sarnia , Ottawa and many destinations in between. We want to welcome a number of new members to our mailing list. The Alliance for Families with Autism (AFA) has been doing a weekly mailing to our community for nearly a year. The mailing includes articles from Ontario and across the country that are pertinent to our community. Also included are events, workshops, AFA updates and other useful information.

The Alliance for Families with Autism (AFA) is a volunteer organization. Our executive members include parents and a grandparent of children with autism. Our mission is improving the lives of children and adults affected by autism. We continue to provide factual information in a non-partisan approach to all stakeholders.

The Alliance for Families with Autism (AFA) has had a number of meetings that have included the Leaders from both the New Democratic Party and the Progressive Conservative Party. We have met with the Premier’s office and the Minister of Education.

In 2008, we have met with the current Minister of Children and Youth Services. As well, we have met with the Ministry of Community and Social Services with regards to adult issues. The AFA believes that along with education and children services, we also need an adult autism services strategy. This strategy would include cross-ministerial collaborations to ensure a life long continuum of services accessible based on an individual and/or family needs.

If you are interested in becoming more involved with the AFA please read the following information regarding PAY IT FORWARD.

The Alliance for Families with Autism (AFA)…

“PAY IT FORWARD”

Over the years there have been parent advocates that have benefited the autism community greatly. Many of these parents have dedicated countless hours, weeks, months and years of advocating at the cost of their own families. These parents and grandparents have been involved in law suits, rallies, committees, boards and government initiatives.

PAY IT FORWARD is an opportunity for everyone to help and share information with others in the autism community. It is a great way to allow everyone to do their part!

The AFA will pick information that has been forwarded to our email address. The AFA will add a segment to our mailings periodically based on the amount of information we receive.

The information you choose to share with the community needs to be constructive and brief. The information must impact our community in a positive way.

Some ideas to get us started are...

- description of a valuable workshop you attended

- information about an outing or attraction that is child friendly for the autism community

- share information regarding an appeal process

- share information about programs such as Incontinence Supplies Grant or Access 2 Entertainment Card

You can also PAY IT FORWARD by helping the AFA. Some ideas to get us started are…

- encourage others to join AFA mailing list

- add media contacts in your area to the AFA media mailing list for releases

- join an AFA committee for “adult issues” or “October/2008 candle vigil”

- lead a vigil in your area or attend a vigil in your area during October’s Autism Awareness Month

Certainly the best way to PAY IT FORWARD is to help another family in your community!

We hope this new initiative is a great success. The success can only be based on your participation so help the community and PAY IT FORWARD.

Send all suggestions and information to autismafa@yahoo.ca

and remember to write PAY IT FORWARD on the subject line of your email. Please indicate, as the author of the information, if you wish to remain anonymous.

THE ALLIANCE FOR FAMILIES WITH AUTISM (AFA)

Please contact us at autismafa@yahoo.ca

Please forward articles & information to ktchmeifucan2002@yahoo.ca

Check out the news article BLOG sent out with each mailing.

http://autismnewsarticles.blogspot.com

MEDIA Kit for Town Hall Meeting UPDATED

2008-03-15T12:45:00.001-07:00

Biographies for the
Alliance for Families with Autism

Current Executive Members.

John S. McVicar, B.A., LL.B.
Twenty years in tax/estate planning with two insurance companies. Successful owner of largest international student/homestay business in Waterloo Region, sold in 2001. Now President of Finding New Markets Ltd., a marketing consulting company specializing in Ontario food products. Grandson Ian McVicar privately diagnosed at age 3 (2004) since family doctor refused referral. Joined wait list. Ian's mother decided to stay home and create her own program while waiting. Has won accolades from Erinoaks' therapists for her program. As of this writing, 2nd grandson is now diagnosed with Aspergers. October 2006 - I made written submission to Minister Flaherty's Expert Panel on Financial Security for Children with Severe Disabilities. February 1, 2007 - I made verbal and written submission to Senate Committee on Social Affairs.

Lisa Prasuhn
Busy mother raising three young children along with her husband Mark. They reside north of Toronto, on a rural acreage. Her seven year old daughter Carolyne was diagnosed with autism at the age of four years old. Through facing the many difficult challenges that autism presents to those affected and their families she has become very aware of the gaps in services that exist for all children with a diagnosis. Lisa has been involved with her local Community Living Association in providing help to other parents struggling with a new diagnosis of autism. Carolyne is non verbal, and through working with her daughter Lisa has mastered invaluable skills in the area of visual communication systems, in addition to working extensively with her daughter in many other areas of need. Recently Carolyne received funding for her IBI therapy, a vital part of Carolyne's progress. Along with her family, Lisa has worked with television and newspaper media to help promote autism awareness and education, particularly in the area of IBI therapy and the benefits provided to all children with autism. With her daughter as a constant source of inspiration Lisa looks forward to helping build on the recent positive changes in our province and contributing to the future of all who are diagnosed with autism.

Pat La Londe
I am the proud mother of a beautiful 9 year old daughter Lauren who was diagnosed with autism at the age of 4. Since Lauren's diagnosis I have become an active member of the autism community helping to organize fund raisers and public awareness campaigns that have received front page print media and television coverage. S.E.A.C member of the Limestone District School Board, Kingston. I was Fundraising Chair for the Special Olympics Figure Skating Competition and President of The Crohn's and Colitis Foundation of Canada-Kingston Chapter for 7 years. Advocating for better educational, financial and family supports to meet my daughter's needs truly has been the most important, rewarding, frustrating and challenging "job" that I have held. Lauren is the recipient of one of the 225 IBI spots announced recently by the current government and is currently receiving direct funding services. Lauren received one year of direct service IBI in 2003 until the age of 6. My personal goal is to build collaboration amongst stakeholders (families with ASD, agencies, school boards and community) so that there will come a day that families with ASD will be citizens of the province without barriers.

Cindy DeCarlo
Proud mother of two children, Mitchell age four and Alexandria age ten. Mitchell was diagnosed before the age of two and waited nearly two years before receiving IBI services. Mitchell began his therapy in January of 2006 and is currently receiving direct funding services. Cindy has been advocating for children with special needs for more than 3 1/2 years. She played a key role in mobilizing advocacy activities that contributed to MCYS approval for the Children's Treatment Network of York Simcoe and currently is on the Board of Directors. In April of 2005, Cindy began her focus on an autism awareness campaign that crossed the province. Since that time, she has been a member of the Ministry of Children & Youth Services Provincial Advisory Group for the Autism Spectrum Disorders Strategy and more recently the Ministers' Provincial Autism Spectrum Disorders (ASD) Reference Group.

Trish Kitching
Dedicated advocate and mother of three children, Morgan age 6, Liam age 8 and Veronica age 10. Morgan was diagnosed on his second birthday and was fast-tracked through the diagnostic system but still waited his turn before receiving IBI, he will be leaving IBI June 27th of this year.
Liam was diagnosed at age 3 years and waited about 11 months before beginning his therapy, recieved only 7 months of therapy and left at the age 6 cutoff, entered school for three years and then was re-instated to IBI after waiting 18 months. Veronica was initially diagnosed ADHD but that changed to mild autism, last year. She attends public school and has an IEP to support her.
Trish has been instrumental in advocating for her children with varying special needs for some time. Locally, this is the fourth year that she is managing a support group as a founding member based in Sudbury called Autism Coffee Chat which meets once monthly as well she moderates a private discussion forum for rural parents. This group boasts 85 members.
She is an Executive Member of the Alliance for Families with Autism, and helped to organize the Debate in June, the upcoming Town Hall Meeting as well as the second Candle Light Vigil held province-wide. Trish maintains the AFA Blog as well, puts together Autism News Articles mailings for over 600 people weekly.

She works full time and manages with a loving husband, three respite workers to maintain family balance and a driver for her boys to attend IBI.


AFA Photos of events can be found at
www.allianceforfamilieswithautism.blogspot.com

MEDIA ADVISORY

For Immediate Release
February 29, 2008

AUTISM TOWN HALL MEETING WITH MINISTER MATTHEWS AND MINISTER WYNNE

Toronto – February 29, 2008 – The Alliance for Families with Autism (AFA) is pleased to announce we are hosting a Town Hall Meeting regarding the issues surrounding autism on Tuesday, March 18, 2008. The meeting will include Ministers from the Ministry of Children and Youth Services as well as the Ministry of Education.

In attendance will be Hon. Deb Matthews, MCYS and Hon. Kathleen Wynne, MEDU. All parents and families are welcome to attend this unprecedented event. It is a unique opportunity for the autism community to voice their opinion with regards to current programs and receive an update from both Ministers regarding the direction of their ministries for the future.

The Alliance for Families with Autism (AFA) is a volunteer organization. Our executive members include parents and a grandparent of children with autism. Our mission is improving the lives of children and adults affected by autism. We continue to provide factual information in a non-partisan approach to all stakeholders.

LOCATION: Bur Oak Secondary School , 933 Bur Oak Avenue , Markham , Ontario

DATE: Tuesday, March 18, 2008 6:30 pm

Following the Town Hall Meeting there will be media availability at 8:30 pm. Executive members from the AFA as well as Hon. Deb. Matthews and Hon. Kathleen Wynne will be present for interviews.

For more information please contact,

Cindy DeCarlo (705) 737-0417 advocate.4kids@sympatico.ca

Trish Kitching (705) 222-9432 ktchmeifucan2002@yahoo.ca

THE ALLIANCE FOR FAMILIES WITH AUTISM (AFA)
Please contact us at autismafa@yahoo.ca
Please forward articles & information to ktchmeifucan2002@yahoo.ca
Check out the news article BLOG sent out with each mailing.
http://autismnewsarticles.blogspot.com

The Alliance for Families with Autism (AFA)
Introductory Message

We live next door, down the street, we are members of your community, we are families with autism.
Autism is affecting you, your spouse, your loved ones and friends, and your community at large. Our group is committed to advocacy, public awareness and sharing of factual information to our autism community, supporters and policy makers.
We believe in working with all political parties, organizations and communities to be true advocates for autism. Autism prevalence is drastically escalating. The rates continue to climb!
We believe that accountability and open communication are essential. We are families that achieved over the past few years a proven track record of accomplishment. Very recently we had a preliminary meeting with Minister Chambers from the Ministry of Children and Youth Services and Marg Spoelstra, Executive Director of Autism Ontario. Next month we will be meeting with Minister Wynne from the Ministry of Education. We are also requesting a meeting with Mr. John Tory, Leader of the P.C. party and Howard Hampton, Leader of the NDP. These meetings are yet to be confirmed.
We strongly believe in a non-partisan approach and that autism deserves the attention and support of all political parties at all levels. We look forward to active alliances with all families, autism supporters and organizations.
We are presently developing our email list. If you wish to have more information about our group or would like to join our free email list please see our email address below.
The autism community needs us all working together for their future!
Sincerely,
The Alliance for Families with Autism
Please contact us "AFA" at
autismafa@yahoo.ca
The Alliance for Families with Autism (AFA)
JANUARY 2008 UPDATE
We are a volunteer organization. Our executive members include parents and a grandparent of children with autism. Our mission is improving the lives of children and adults affected by autism. We continue to provide factual information in a non-partisan approach to all stakeholders.
Update #1
As most of you already know, the AFA has been working on putting together a Town Hall meeting for the autism community. Our plans will include having the meeting to take place in the Toronto area. Prior to the election, we received a written commitment from all three parties indicating their involvement if they won the election.
We have been in contact with the Liberal government and we are presently working on the details and date for the Town Hall Meeting. As details become available, the AFA will keep you posted!
Update #2
The Alliance for Families with Autism (AFA) compiles and distributes weekly news mailings of pertinent information. We appreciate all of the positive comments and feedback we have received regarding our mailings.
Please ensure you forward any information that needs to be included in our February mailings (especially information that is time sensitive). Please forward articles and information to ktchmeifucan2002@yahoo.ca
Update #3
In June 2007 the Expert Clinical Panel for the Autism Intervention Program received participation from a stakeholder conference. The final report has been completed and it is entitled “The Development of Clinical Practice Guidelines for the Delivery of Intensive Behavioural Intervention for Children with Autism Spectrum Disorders in Ontario.” Please find a brief summary attached. Regional offices of MCYS and Regional Service Providers in Ontario also have a copy of this summary.
The Alliance for Families with Autism (AFA) Executives include:
Cindy DeCarlo – Barrie advocate.4kids@sympatico.ca
Trish Kitching – Sudbury ktchmeifucan2002@yahoo.ca
Pat La Londe – Kingston palalonde21@aol.com
John McVicar – Kitchener findingnewmarkets@sympatico.ca
Lisa Prasuhn – Beeton lisa.prasuhn@sympatico.ca

Please contact us at autismafa@yahoo.ca
Forward articles & information to ktchmeifucan2002@yahoo.ca
Check out the news article BLOG sent out with each mailing. http://autismnewsarticles.blogspot.com

THE ALLIANCE FOR FAMILIES
WITH AUTISM (AFA) FALL 2007 UPDATE

We felt it was necessary and important to give the autism community an update of what we have done and where we are heading for the fall!

Our executive members include parents and a grandparent of children with autism.

Our mission is improving the lives of children and adults affected by autism. To provide factual information in a non-partisan approach to all stakeholders.

Throughout the year we have had meetings with John Tory, Leader of the Progressive Conservative Party, Howard Hampton, Leader of the New Democratic Party, the Premier’s office, senior officials of the Ontario
Government including Minister of Education and Minister of Children and Youth Services.

During these meetings the following priorities for action
were addressed:
1) Implement all the recommendations from the Autism
Reference Group Report to the Ministry of Education
and Ministry of Children and Youth Services.

2) Direct Funding Option (DFO)/Direct Service Option
(DSO) choice for Autism Intervention Program (AIP)
with no waiting list and seamless transition to similar
programming in school boards for children who
require ongoing support.

3) Standard certification for service providers with a
regulatory body of behaviour analysts and therapists.
Increasing the number of psychologists to work with
children and adults with autism, including a graduate
level ABA teaching program at universities. Allow
third party Behavioural consultants specialized in
autism, senior therapists and therapists into schools.

4) Continuum of Government funded services and
programs. Specialized services such as speech and
occupational therapy need to be delivered in a timely
manner. Programs such as Special Services at Home
(SSAH) and Assistance for Children with Severe
Disabilities (ACSD) need to support all families with
autism and give clear guidelines to their key elements
of administration.

5) Creation of National Autism Strategy that would
include Federal-Provincial partnerships to ensure
adequate resources and standards to provide
Canadians with timely diagnosis, assessments,
treatments, supports and research.
We all know that Ontario’s provincial election is right
around the corner. The Alliance for Families with Autism
(AFA) felt it was extremely important to our community to
ensure that we had commitments from each of the three
main political parties. We held a three-party political
debate on autism policies and programs in June, 2007. We
felt all informed voters would be interested in the
information from this unprecedented and unique event.
The debate was a great success and included such speakers
such as Shelley Martel from the New Democratic Party,
Frank Klees and Christine Elliot from the Progressive
Conservative Party, and Minister Wynne from Education,
as well as Minister Chambers from Children and Youth
Services from the Ontario Liberal Government.
Soon the election will be over and we will know who will
be leading the province of Ontario for the next four years.

What will be next for the autism community after the
election?

During this election period, The Alliance for Families with
Autism has continued to work with all three parties. That
work has led us to our upcoming event for November. This
event will be unprecedented and unique, as was the debate
in June.

We have arranged with all three parties, the elected
government will participate in a “Town Hall” Meeting
with the autism community hosted by The Alliance for
Families with Autism. This meeting will include the
Ministers from Education, Children and Youth Services, as
well as Community and Social Services. This event will
allow our community to meet the Ministers responsible for
those ministries and have an opportunity to ask questions
and make comments to the new government.

The “Town Hall” Meeting will take place in November at a local
school in the GTA. The date and location will be confirmed following the election.
We will continue to advocate for our community to ensure every person with autism will receive the support and services they require. We believe that there are different ways to advocate for our community and that is what
makes our community so unique. Those different styles of advocating will only bring more attention to the issues and propel our cause even further.

The Alliance for Families with Autism (AFA) will continue to compile and distribute weekly news mailings of pertinent information on autism from Ontario and across Canada to ensure that our community has information available. We
appreciate all of the positive comments and feedback we have received regarding our mailings!

As well as October being election month, it is also Autism Awareness Month. Last year we were involved in a province wide candlelight vigil. We have had a number of families request that this be an annual event.

The Alliance for Families with Autism will be hosting the event this year. The vigil will take place on Monday, October 01, 2007 from 7:00 – 7:30 pm. The vigil will not be a political evening, although it will be held at MPP riding offices
across Ontario.

To further inform and build awareness we have invited all candidates to partake in the event from the three main political parties. We want to tell the world, with
our candles, that every individual with ASD has the right to shine. We want to honour all individuals and families living with Autism Spectrum Disorder and related disorders.

Please find a list of confirmed locations at our blog at http://allianceforfamilieswithautism.blogspot.com
If you are interested in participating at a different location please contact our primary organizer John McVicar at findingnewmarkets@sympatico.ca

For those of you attending candlelight vigils on October 01,
2007… please remember to light a candle for Miles when you are lighting a candle for your family.

Sincerely,
The Alliance for Families with Autism (AFA)
Executive Members -
Cindy DeCarlo – Barrie
Trish Kitching – Sudbury
Pat La Londe – Kingston
John McVicar – Kitchener
Lisa Prasuhn – Beeton

Media kit
AFA

The Alliance for Families with Autism (AFA) is announcing our new initiative…
“PAY IT FORWARD”
Over the years there have been parent advocates that have benefited the autism community greatly. Many of these parents have dedicated countless hours, weeks, months and years of advocating at the cost of their own families. These parents and grandparents have been involved in law suits, rallies, committees, boards and government initiatives.
PAY IT FORWARD
is an opportunity for everyone to help and share information with others in the autism community. It is a great way to allow everyone to do their part!
The AFA will pick information that has been forwarded to our email address. The AFA will add a segment to our mailings periodically based on the amount of information we receive.The information you choose to share with the community needs to be constructive and brief. The information must impact our community in a positive way.
Some ideas to get us started are...
- description of a valuable workshop you attended
- information about an outing or attraction that is child friendly for the autism community
- share information regarding an appeal process
- share information about programs such as Incontinence Supplies Grant or Access 2 Entertainment Card
You can also PAY IT FORWARD by helping the AFA. Some ideas to get us started are…encourage others to join AFA mailing list, add media contacts in your area to the AFA media mailing list for releases, join an AFA committee for “adult issues” or “October/2008 candle vigil”, lead a vigil in your area or attend a vigil in your area during October’s Autism Awareness Month
Certainly the best way to PAY IT FORWARD is to help another family in your community!
We hope this new initiative is a great success. The success can only be based on your participation so help the community and PAY IT FORWARD.
Send all suggestions and information to autismafa@yahoo.ca
and remember to write PAY IT FORWARD
on the subject line of your email.
Please indicate, as the author of the information,
if you wish to remain anonymous.
THE ALLIANCE FOR FAMILIES WITH AUTISM (AFA)

May 30, 2007: The Alliance for Families with Autism - Three Party Political Debate on Autism Policies in Ontario

MEDIA ADVISORY
For Immediate Release
May 30, 2007
THREE PARTY POLITICAL DEBATE ON AUTISM POLICIES IN ONTARIO
Toronto - May 30, 2007 - The Alliance for Families with Autism (AFA) is pleased to announce that it is hosting a three-party debate on autism policies and programs. All interested voters in Ontario and the media are welcome to attend this unprecedented and unique opportunity to hear what the elected representatives of the three main political parties have to say about their respective policies regarding autism.
Autism is a serious neurological disorder which is increasingly becoming an urgent public health matter and a pressing education issue. Supports are long over due for adults with Autism Spectrum Disorder (ASD). The Centre for Disease Control and Prevention (CDC) in the U.S. now reports the prevalence rate as being 1 in every 150 children being diagnosed with ASD. Although the cause and cure of autism are not yet known, the best treatment has been known for decades. Studies show that early Intensive Behaviour Intervention (IBI) based on principles of Applied Behaviour Analysis (ABA) can help up to 48% of children with autism develop to the point of being able to function at a level comparable to average children. Yet, hundreds of children with autism have never received this vital treatment and the waitlist continues to grow.
"Much has happened since the last election in the field of autism policies. While there have been steps forward, there have also been steps backward. The issues have been studied and recommendations have been made. At every stage of the life cycle families with autism face struggles and challenges that should not be. Ontario has a long way to go in order to provide disabled children with autism the quality healthcare, education and support they need to reach their full potential and become the fully contributing members of our society that they can be. The coming election is critical and we want to hear the parties debate their autism policies so everyone will know where they stand." said Sam Yassine, founding member of AFA.
Where: Sheraton Parkway Inn, Richmond Hill, corner HWY #7 and Leslie.
When: Monday, June 4, 2007. Doors open at 6:30pm. Debate begins at 7pm.
Members of the autism community, the general public, and the media are invited to attend this special event.
- 30 -
For more Information, contact Cindy DeCarlo (705) 737-0417 advocate.4kids@sympatico.ca
The Alliance for Families with Autism - Debate
Backgrounder
MPPs participating in the political debate are:
Shelley Martel, MPP
NDP Critic for Health & Longterm Care and Autism Issues

Frank Klees, MPP
PC Critic for Education

Lisa MacLeod, MPP
PC Critic for Children & Youth Services

Hon. Kathleen Wynne, MPP
Minister of Education

Hon. Mary Anne Chambers, MPP
Minister of Children & Youth Services

If you wish to have more information about our group or would like to join our free email list, please contact us at autismafa@yahoo.ca
The autism community needs us all working together for their future!

Sincerely,

Cindy DeCarlo, Barrie
Trish Kitching, Sudbury
Pat La Londe, Kingston
John McVicar, Kitchener
Lisa Prasuhn, Beeton

The Alliance for Families with Autism

Debate Notice

POLITICAL DEBATE
ON THE ISSUES SURROUNDING
AUTISM
Policies and Programs
NDP, PC & LIBERAL MPP’s
(Elected Party Representatives)
Will Be Present!
Hosted By
The Alliance for Families with Autism
Monday June 4th, 2007 ~ 7:00 p.m.
SHERATON PARKWAY HOTEL
RICHMOND HILL, ONTARIO
(CORNER OF HWY# 7 & LESLIE)
DOORS OPEN AT 6:30 PM  START TIME IS 7:00 PM
SEATING IS LIMITED

DEBATE WILL RUN UNTIL 9:00 PM – EVERYONE IS WELCOME!
SPECIAL OVERNIGHT ROOM RATES HAVE BEEN ARRANGED UNDER “AFA”
PLEASE CONTACT RESERVATIONS @ (905) 881-2121
BEST WESTERN - $99.00 or SHERATON PARKWAY - $139.00
The Alliance for Families with Autism
As we approach the Provincial election in October this debate will provide our community with an excellent opportunity to hear from the parties about their respective policies regarding autism. Much has happened since the last election. Our community needs clear answers for the next four years. This is our chance to see how the parties differentiate themselves from each other regarding the appropriate treatment of our children.
The event will be recorded.

The Debate has Not been Planned as a child friendly event
*******************
The Alliance for Families with Autism (AFA) is very excited about the upcoming political debate to be held on Monday, June 04, 2007.

We want to make sure that we get a truly great turn out. It is an important evening so please come out and show all 3 political parties how important this issue is to the autism community, our friends, family and neighbours!

The flyer has all of the details for time and location.

The deadline for your questions will be
8:00 a.m. Monday, May 28, 2007
Our community needs clear answers
for the next four years!

Autism Debate Email Notice-Post event
June 2007

Once again, the Alliance for Families with Autism (AFA) would like to thank all of you who attended the debate last week. We also would like to thank the community for their input into the questions.

As promised, the AFA is forwarding the written responses from the debate that took place on Monday, June 04, 2007.

It is important for the autism community to know the position of all three parties so that we can make an educated decision for the upcoming election this fall.

If you are interested in purchasing a DVD copy of the debate, please email Lisa at lisa.prashun@sympatico.ca. The cost of the DVD will be $10.00 to cover the costs involved for the DVD, packaging and postage. There is also a portion that will go to the Alliance for Families with Autism inorder to cover costs associated with the debate and other operational expenses associated with the AFA.

As always, the AFA's mission is to improve the lives of children and adults affected by autism and to provide factual information in a non-partisan approach to all stakeholders.

Thank you,

The Alliance for Families with Autism

NDP WRITTEN RESPONSE
Question:

1) There has been an incredible increase in the number of children on the waitlist to receive IBI therapy from the AIP. What is your party’s plan if it forms the next government, to eliminate the waitlist and what is the timeline involved? As well, what will you do to ensure that all Regional Programs and Direct Funding Programs are consistent with the admission, review and discharge of children with autism from the AIP?

Response:

The wait list has grown 1,100% under the McGuinty Liberals’ watch. When the Liberals were elected, only 89 children were waiting for IBI treatment to begin. Now, the wait list of children assessed and eligible for IBI therapy has grown to 985 children. The provincial government must make a significant financial investment up front to ensure children who need IBI can receive it. Otherwise, as a society, we will pay so much more when these children are unable to finish school, find themselves in the court system, or end up in a group home or an institution, because they were not able to receive the treatment they needed.

New Democrats believe that we must make an important investment now. The current wait list must be completely cleared and new children who qualify for IBI treatment must be able to start their services as soon as they qualify. We believe doing both could be completed in a maximum of 3 years.

The issue of the consistent and fair delivery of Regional and Direct Funding Programs, across the province, is an important one. Parents of children with autism need to know that regardless of where they are receiving services in Ontario , access to these services is fair and consistent. The Ministry of Children and Youth Services has contractual agreements with the Regional providers to provide IBI treatment. In addition, the Ministry is the funding agent for both the Regional and Direct Funding Programs, and as such, has an obligation to guarantee that all policies and procedures set out by the Ministry are being applied consistently by all providers. If not, the Ministry must be accountable to parents and intervene directly with providers to guarantee that the rules regarding admission, review, and discharge of children from programs are properly followed.

Finally, we must ensure there is no cost for parents to choose the Direct Funding Option (DFO) as opposed to the Direct Service Option (DSO). The decision between DFO and DSO is often income based for families living on a tight budget. Current DFO rates do not cover all the costs, making it still difficult for the families with the most limited finances to choose DFO.

Question:

2) With the recent announcement regarding Policy/Program Memorandum 140 to incorporate ABA into schools, how will your party, if elected, develop and monitor ABA models for school age children with ASD and ensure the proper qualifications and mandatory training will take place? Please explain what would be your action plan and timeline to ensure that each child with autism is receiving the services they require within the education system and would that include making the Individual Education Plan (IEP) legally binding like the Identification Placement Review Committee (IPRC)?

Response:

The recent announcement regarding Policy/Program Memorandum 140 to incorporate ABA techniques into schools, falls short of what New Democrats believe is required in the school system today – that IBI therapists must be permitted into the classroom.

We appreciate that for children with ASD who are mild on the spectrum, the application of general ABA principles might be enough to support their learning. But for many other children with autism, especially those who are severe on the spectrum, their own therapist, in the classroom, is what is required to allow them to learn.

New Democrats believe that the 7000 children with ASD currently in the public school system must have the services they require to learn incorporated into their Individual Education Plans and that a copy of these plans, must be submitted to a separate office in the Ministry of Education to ensure boards are meeting their requirements in this regard.

A fundamental shift in the attitudes of some school boards and Ministry personnel is required with respect to ensuring children with ASD are having their education needs met. Justice Kiteley’s Court decision of March 2005, (Deskin/Wynberg case) made it very clear that too many boards were not providing the supports and services children with autism required, and that the Minister of Education was not giving direction to school boards to do so. This must change.
Question:

3) Does your party’s plan, if it forms the next government, include children that need to receive intensive ABA therapy within the education system? If so, please explain the plan and who would be accountable for putting together such programs and overseeing them? If not, how will your government, if elected, integrate children receiving intensive ABA therapy if it is not taking place within the education system? Once again, please indicate a timeline for each stage.

Response:

The NDP would ensure that IBI therapists are allowed into classrooms in Ontario . For many children who are severe on the spectrum, having their IBI therapists with them at school allows them to learn and to access the public education system – a right they are entitled to in Ontario. Unless and until the Minister of Education directs school boards to permit IBI therapists into the classroom, children with autism will continue to be denied the public education every child in Ontario is entitled to receive. Justice Kiteley said it best in her March 2005 Court decision in the Deskin/Wynberg case,

“The Minister of Education failed to fulfill the statutory duty to ‘ensure that appropriate special education programs and special education services’ were available to all exceptional pupils without payment of fees. In particular, the Minister of Education failed to develop policy and give direction to school boards to ensure that ABA/IBI services are provided to children of compulsory school age. Indeed, the actions and inactions of the Ministry of Education and the Minister created a policy barrier to the availability of IBI/ABA in schools. The absence of ABA/IBI means that children with autism are excluded from the opportunity to access learning with the consequential deprivation of skills, the likelihood of isolation from society and the loss of ability to exercise the rights and freedoms to which all Canadians are entitled.”

The NDP would require the Minister of Education to take the lead and guarantee that all children with autism can access IBI therapy in the classroom if they need this to learn.

Question:

4) Families are being given true choices between direct funding and direct services for their children receiving IBI from the AIP. Will there also be a choice of funding for families not wanting to send their children with autism into the public school system?

Response:

The NDP supports public education. Every child in the province, including a child with autism, has a right to public education.

The unfortunate reality is that as a result of the failure of the Ministry and Minister of Education to fulfill their statutory duties to ensure appropriate programs and services are available for children with autism in the public school system, parents have been forced to send their children to private schools to access supports. They are being forced to pay out of their own pocket to secure an education for their son or daughter because they can’t get what is needed in the public school system.

New Democrats believe that the Minister and Ministry must fulfill their obligations to ensure the appropriate supports and services are in place (including having IBI therapist in the classroom), so that children with autism can fully access a public education in Ontario .

Question:

5) What does your party, if elected, feel will be their greatest challenges with regards to the autism community and why? What are your plans to overcome these challenges?

Response:

The greatest challenge facing the provincial government is to recognize the incidence of autism spectrum disorder is rapidly increasing (1 out of 150 children) and we are not ready to meet the needs of those children who are being diagnosed now and will continue to be diagnosed in ever increasing numbers in Ontario . Meeting this challenge will require substantial public investments in supports and services for children, both pre-school and school-age, and support for research to unlock the reason for the “epidemic” of ASD.

We will need to be steadily increasing the number of health care professionals who both diagnose and treat children with autism, including paediatricians, psychologists, senior IBI therapists and therapists. A specific strategy for recruitment and retention of these providers is required.

Given the number of therapists must grow to meet the increasing need for IBI treatment, more spaces must be made available in the college system to qualify and graduate more therapists. This will also lead to a need for some form of regulation of therapists in order to ensure the provision of high quality IBI services to children with autism.

The budget for IBI treatment must grow to ensure we are able to start services for children with autism once they are assessed and qualify for funding for treatment. This increased budget is also critical to ensure we don’t have children who qualify for IBI languishing on wait lists.

As children with autism grow into adulthood, and in recognition of the fact that many adults with autism now lack programs and services to support them in the community, we will need supportive housing, employment supports, etc., to ensure they can fully participate in the community.

Question:

6) How will your party, if it forms the next government, ensure families receive the proper services they need when they are faced with linguistic and cultural barriers? As well, we often concentrate our efforts on the children and youth affected by autism in Ontario . What are your party’s plans for adults outside of the preschool and education system, in terms of assigned living, work opportunities, and ensuring these individuals do not slip through the cracks?

Response:

The face of Ontario is changing and it is imperative that our public services take that reality into account and reflect cultural and linguistic diversity. The Regional Program providers, as employers, must develop a recruitment strategy for staff which recognizes the diversity of the families and communities they are working with. The provincial government must also provide public information about autism and available government services in appropriate languages to newcomer and settlement agencies, doctors’ offices, family health teams, community health centres, and childcare centres. The Ministry of Training, Colleges and Universities, in delivering college programs for IBI therapists, must also be conscious of the need to do outreach to attract potential students who reflect the diversity of the children with autism who they will be working with.

Adults with autism deserve access to community supports and programs. Many never received any treatment, so those who are severe on the spectrum may have more challenges with respect to community living than others who received treatment at a younger age. Given the increase overall in the number of children now being diagnosed with ASD, adults with ASD and those moving to adulthood require a much broader range of supports and services than we are currently providing in Ontario. We need assistive/supportive housing to accommodate adults in the community; vocational training and supervised co-op placements which also support employers who are keen to participate; adult day programs for those unlikely to participate in co-op placements; and respite services for caregivers who care for their adult children with ASD at home. It is imperative that individuals who work with/support adults with ASD in the community have specific training to be able to recognize and respond appropriately to their needs.

Question:

7) Does your party support a National Autism Strategy and if so what will you do to ensure you are working towards this goal? If elected, what would be the components of a National Autism Strategy that Ontario should support?

Response:

The NDP supports the creation of a National Autism Strategy to ensure that parents of children with autism, wherever they live in Canada , have equal access to basic supports and services their children need – at home, in school, and in the community. Unfortunately, this is not happening.

Under the McGuinty Liberals, in May 2006, Stacey and Jonathan Haley of Bowmanville moved to Alberta so their twin boys could receive a full range of publicly-funded services and programs. “It was a heart-breaking decision – we don’t know a soul in Alberta and we have a great support network in our local community,” said Stacey. “But, we really didn’t feel that there was any other alternative. If we wanted 40 hours of IBI for each of our boys, we were looking at costs of almost $200,000 a year.”

Deborah Campbell left Ontario in August 2005 because her son Johnathan, was unable to access the autism programs he required. In Alberta , he receives publicly-funded IBI and other services which meet his needs. “Government ministries and school boards in the province of Ontario are forcing parents to become both political and educational refugees,” said Campbell .

These forced relocations must stop and the federal government needs a national strategy which establishes a range of publicly-funded autism services to be available in each province. The federal government must also provide funding to all provinces and be accountable to ensure each reaches that service level.

The federal government must also step up to the plate with significant funding for autism research, especially in light of the sharp increases in incidences of ASD. While many organizations are fund-raising for research (i.e. Autism Speaks Walk), the burden cannot fall exclusively to families, friends, and the private sector to pay for autism research.

The real way to ensure families with children with autism get the IBI treatment they need, wherever they live, would be to bring autism under the Canada Health Act. We support the work done by NDP MP Peter Stoffer, and other MPs who feel the same way, to try and make this an important national issue.

Question:

8) There are several legal battles being fought on the issue of ABA and IBI in Ontario . 120 Ontario Human Rights Commission cases under the group name Arzem, the Class Action case of Sagharian, and the Class Action case of Hartley. What will your government do, if elected in power this fall to compensate these families and to reach a fair resolution that will put an end to the legal battles? Will the governing parties categorically say that they will not seek compensation for legal fees which are a major risk for these members of the autism community seeking what they believe is a fair treatment for their children?

Response:

New Democrats would not seek compensation for costs from parents with children with autism who have gone to court to try and get the services their children needed. These parents have struggled enough. They should never have been forced into court in the first place, but were, because their government was not providing what their children were/are entitled to receive.

In the last election, Mr. McGuinty said, “I also believe that the lack of government-funded IBI treatment for autistic children is unfair and discriminatory. The Ontario Liberals support extending autism treatment beyond the age of six.” If Mr. McGuinty really meant what he said, then once he was elected, he would have stopped the court case against the Deskin/Wynberg families and settled with them. Instead, Mr. McGuinty fought these families in Court for another 11 months. He only stopped the age 6 cut-off of children’s IBI treatment when Justice Kiteley forced him to with her court decision at the end of March, 2005—a full 18 months after Mr. McGuinty had been elected. Taxpayers’ money, that should have been used to pay for IBI, was instead squandered by the Liberals to fight these families, not once, but twice, in Court. And now Mr. McGuinty is prepared to squander even more money by going to Court on June 18th, to try and block the release of information requested over 3 years ago by NDP MPP Shelley Martel on how much the Liberals spent fighting these families.

With IBI therapists in the classroom, the elimination of the wait list, province-wide autism program consistency, education programs that reflect linguistic and cultural diversity, increased support and services for adults to enjoy a quality of life in the community and an open ear to further assist families and individuals living with autism, the need to go to court should end.

No Ontario family with a child with autism should have to go to court to get the services they need—at home, at school, or in the community—because their government refuses to provide what is needed.

PC PARTY WRITTEN RESPONSE

Debate Questions

1) There has been an incredible increase in the number of children on the waitlist to receive IBI therapy from the AIP. What is your party’s plan if it forms the next government, to eliminate the waitlist and what is the timeline involved? As well, what will you do to ensure that all Regional Programs and Direct Funding Programs are consistent with the admission, review and discharge of children with autism from the AIP?

Progressive Conservative Party Leader John Tory announced in February that, if elected, a PC government would take action to help parents and children dealing with autism. The first step in the PC party’s plan is to begin by clearing the existing wait list for autism treatment for children under age of six by providing direct funding immediately for every child on the waitlist. Specifically, any child on the waitlist would immediately be offered direct funding.

The PC Party’s fiscal plan includes a new targeted investment of $70 million to clear Dalton McGuinty’s wait list (estimated at 1,400 waiting without service).

2) With the recent announcement regarding Policy/Program Memorandum 140 to incorporate ABA into schools, how will your party, if elected, develop and monitor ABA models for school age children with ASD and ensure the proper qualifications and mandatory training will take place? Please explain what would be your action plan and timeline to ensure that each child with autism is receiving the services they require within the education system and would that include making the Individual Education Plan (IEP) legally binding like the Identification Placement Review Committee (IPRC)?
AND
3) Does your party’s plan, if it forms the next government, include children that need to receive intensive ABA therapy within the education system? If so, please explain the plan and who would be accountable for putting together such programs and overseeing them? If not, how will your government, if elected, integrate children receiving intensive ABA therapy if it is not taking place within the education system? Once again, please indicate a timeline for each stage.

Progressive Conservative Party Leader John Tory announced in February that, if elected, a PC government would partner with the education system, child support workers and school boards to ensure that upon reaching school age, children with autism have the supports they need – including, when recommended by a qualified professional, ABA and IBI - as part of a continuum of services to help these children integrate and succeed.

A John Tory government would not have age cutoffs and will provide the right, appropriate and best treatment at any age, as prescribed by an appropriately qualified professional – be it IBI or other services.

Furthermore, a John Tory government would seek more transparency within the public school system in relation to the almost $2 billion allocated to special needs children. A John Tory government will work with school boards, teachers and their representative organizations to ensure appropriately qualified professionals are in the schools to guide and deliver services and programs.

A John Tory government would also look at best practices and adopt international standards to accredit professionals who provide educational support for children with autism.

The PC Party has also included investment in our college and university system in our fiscal plan so that it can meet the appropriate standards and ensure we have adequate supply of accredited trained professionals here in Ontario.

4) Families are being given true choices between direct funding and direct services for their children receiving IBI from the AIP. Will there also be a choice of funding for families not wanting to send their children with autism into the public school system?

The PC Party believes in giving parents choices. Parents know their child best and understand what their needs and abilities are and the environment in which they learn best. A John Tory government would support parents in making the best choice for their child.

In Dalton McGuinty’s Ontario , there is no consistent option across the province. Under John Tory parents will be provided with flexible options that work for them.

A John Tory government will give parents the choice to meet the needs of their children in the best way they see fit – either through a regional service provider or through managing their own child’s services with direct funding for accredited providers.

A John Tory government will also invest an additional $5 million annually in respite programs to give parents and families the support they need and deserve.

5) What does your party, if elected, feel will be their greatest challenges with regards to the autism community and why? What are your plans to overcome these challenges?

The PC Party believes the greatest challenge with respect to the autism community will be restoring their trust in the government.

It is not surprising that parents are disillusioned - Dalton McGuinty has made so many promises and parents have been disappointed so many times. Dalton McGuinty made a promise but then said he didn’t have the resources to follow through and provide the services children so desperately need. When Dalton McGuinty turns around and commits $400 million to retrofit a casino, you have to wonder where social justice has gone in the decision-making process.

A John Tory government has made a commitment to you and to your children and – unlike Dalton McGuinty – he has costed that commitment and he has planned for it in his fiscal plan with the allocation of $75 million starting in the first year of his mandate. John Tory will do what he has said he will do.

6) How will your party, if it forms the next government, ensure families receive the proper services they need when they are faced with linguistic and cultural barriers? As well, we often concentrate our efforts on the children and youth affected by autism in Ontario . What are your party’s plans for adults outside of the preschool and education system, in terms of assigned living, work opportunities, and ensuring these individuals do not slip through the cracks?

Ontario is a culturally diverse province and so our programs and services need to be designed and implemented with that in mind. The PC Party understands the importance of awareness and education that cuts across cultural and linguistic lines and is committed to reaching out to all families in need of support to ensure that these families are aware of what services are available to them.

With respect to adults with autism, the PC Party understands that services have been heavily focused on early childhood interventions. It is important to address the very different set of challenges that adults with autism face.

The PC Party believes that there is more work to be done to provide vocational training for adults with autism to allow these citizens to benefit from the pride that comes from meaningful work. The PC Party believes in an inclusive Ontario and understands the need for more social, recreational and respite programs so that adults with autism are not left unengaged.

7) Does your party support a National Autism Strategy and if so what will you do to ensure you are working towards this goal? If elected, what would be the components of a National Autism Strategy that Ontario should support?

The PC Party would absolutely support a National Autism Strategy.

The PC Party believes a National Autism Strategy should begin by focusing on taking the lead role in three important areas:

1. Coordinating levels of service and programming being delivered across the country to ensure comparable services are being provided across the country, that all jurisdictions are learning from one another’s best practices, and that parents don’t feel pressure to move to another jurisdiction simply to access services for their children.

2. Showing leadership in autism research and sharing lessons from international best practices.

3. Providing more tax credits and programs that will improve the ability for parents, who are too often forced into bankruptcy, to better plan for the future.

8) There are several legal battles being fought on the issue of ABA and IBI in Ontario . 120 Ontario Human Rights Commission cases under the group name Arzem, the Class Action case of Sagharian, and the Class Action case of Hartley. What will your government do, if elected in power this fall to compensate these families and to reach a fair resolution that will put an end to the legal battles? Will the governing parties categorically say that they will not seek compensation for legal fees which are a major risk for these members of the autism community seeking what they believe is a fair treatment for their children?

The PC Party believes it is shameful that parents have spent years fighting with Dalton McGuinty in court to obtain the services for their children that he promised to them in his election campaign.

A John Tory government would not penalize parents in courts and would not be seeking any compensation for any legal fees.

LIBERAL PARTY WRITTEN RESPONSE

Alliance for Families with Autism Debate Questions: Liberal Response

Question #1

There has been an incredible increase in the number of children on the waitlist to receive IBI therapy from the AIP. What is your party’s plan if it forms the next government, to eliminate the waitlist and what is the timeline involved? As well, what will you do to ensure that all Regional Programs and Direct Funding Programs are consistent with the admission, review and discharge of children with autism from the AIP?

We need to talk about where we plan to go but we also need to talk about the progress we have made to-date. Our government is building an improved and expanded continuum of service. We have more than doubled annual spending on services for children and youth with autism to more than $130 million. We’ve hired almost 300 new therapists and established the Ontario College Graduate Certificate Program in Autism and Behavioural Sciences - 100 graduates in 2006, 100 graduates in 2007, and another 200 expected in the next two years. It’s about building the capacity to provide the services needed. More than 1,100 children are now receiving IBI– an increase of 105 percent since April 2004.

Wait list management teams, internal to the Ministry of Children and Youth Services, have given the families of the most recent 231 children real choice when it comes to the Direct Funding Option (DFO) and Direct Service Option (DSO). We are changing the way parents get to choose in the future.

We ended an age cutoff that was implemented by the Conservative government. Since July 2005, children have no longer been discharged on the basis of age. That has caused both the number of children in service and the number of children waiting for service to rise. Approximately 60% of the children receiving IBI services are now age six or older. Approximately 45% of the children currently on the wait list are age six or older.

We also assess children for appropriate services sooner. There were more than 1,000 children waiting for assessment when we took office. By assessing children sooner, we have reduced the wait list for assessment by more than 65%. However, this has also contributed to the growth of the wait list for service.

We struck an Expert Clinical Panel for the Autism Intervention Program, an independent arms-length body that is developing a set of clinical practice guidelines to enable consistent and evidence-based clinical decision-making in the program. The Panel is chaired by Dr. Peter Szatmari and includes a number of experts, including a parent of two children with autism.

Question # 2

With the recent announcement regarding Policy/Program Memorandum 140 to incorporate ABA into schools, how will your party, if elected, develop and monitor ABA models for school age children with ASD and ensure the proper qualifications and mandatory training will take place? Please explain what would be your action plan and timeline to ensure that each child with autism is receiving the services they require within the education system and would that include making the Individual Education Plan (IEP) legally binding like the Identification Placement Review Committee (IPRC)?

Since taking office in 2003, our government has undertaken a number of key initiatives to focus on better student outcomes, including better outcomes for children and youth with autism.

Our government has committed itself to improving supports for children and youth with autism in schools. We launched the Autism Spectrum Disorder Reference Group to provide our government with recommendations on how best to provide this enhanced support. The Reference Group’s recommendations have set the course for the progess we are making.

On May 18, 2007 , the Ministry of Education released a Policy and Program Memorandum (PPM) on the use of Applied Behavioural Analysis (ABA) in schools. School boards have been directed through the PPM to use ABA methods with students with ASD, in accordance with their individual education plans. This includes intensive forms of ABA .

The PPM provides direction to school boards, principals and educators in the following areas:
• To support the use of ABA as an effective instructional approach for many students with ASD ;
• To ensure that ABA methods are incorporated into the Individual Education Plans of students with ASD , where appropriate;
• To ensure that parents and relevant professionals are invited to provide input and participate in the Individual Education Plan (IEP) process;
• To plan for students’ transitions and to use relevant ABA methods to support transitions, where appropriate;
• To develop a plan for the implementation of the PPM and to consult with their local Special Education Advisory Committees ( SEAC ) regarding the implementation; and
• To consult with their local SEACs regarding the monitoring of the implementation of the PPM, at least on an annual basis.
• The Minister’s Advisory Council on Special Education, as well as members of the Ministers’ Autism Spectrum Disorders Reference Group who wish to be involved, will be consulted twice a year regarding the implementation of ABA methods by school boards.

To support school boards in the successful implementation of the PPM on ABA , extensive staff training will be provided. Our government is currently implementing training on ASD for school board teams, up to six to eight representatives from every school board, including superintendents, principals, teachers, teachers’ assistants, school support staff and SEAC members. The school boards’ team training will be followed by principal training and training for school teams - funded through a $1-million investment. Both training opportunities will take place over the summer months to prepare staff to implement the PPM in September 2007. It is estimated that up to 1,400 principals will be trained as well as 1,400 other staff directly working with students with ASD , including principals, teachers and teachers’ assistants.

In addition, our government has provided a grant of $2.75 million to Geneva Centre for Autism. The Centre has committed to use this investment to provide further team training on ABA approaches with school staff in the fall.

We will hold school boards accountable for the implementation of the PPM, as it is a fundamental component of our efforts to strengthen the supports available to children and youth with autism in schools.

Question # 3

Does your party’s plan, if it forms the next government, include children that need to receive intensive ABA therapy within the education system? If so, please explain the plan and who would be accountable for putting together such programs and overseeing them? If not, how will your government, if elected, integrate children receiving intensive ABA therapy if it is not taking place within the education system? Once again, please indicate a timeline for each stage.

Our government recognizes that all children, regardless of their needs, are entitled to a high quality education in Ontario .

Directing school boards on the use of Applied Behavioural Analysis (ABA) with students with autism in schools, through the PPM released on May 18, 2007, was an important step forward in addressing the need for ABA methods to be available to students with autism who need it in schools across the province. We will be carefully monitoring the implementation of the PPM in September in school boards across the province. As previously mentioned, the implementation of the PPM is supported by a number of training initiatives our government has undertaken.

Our progress to-date has been made possible by working in patnership with parents, school boards, teachers, educators, and experts in the field of autism. We will continue to work in collaboration with our partners to implement ABA in schools, including intensive ABA , such as Intensive Behavioural Intervention (IBI).

Question # 4

Families are being given true choices between direct funding and direct services for their children receiving IBI from the AIP . Will there also be a choice of funding for families not wanting to send their children with autism into the public school system?

Our government looks forward to a time when all schools across the province are supportive of children with autism in their schools and are able to provide the services they need. However, we believe that it is important for parents and families to not feel that they are being forced to send their children to school to receive services that they are not comfortable receiving within that system of service provision. The important thing is ensuring that kids who require support be able to get it. We will continue to strengthen and improve all the service options available for children and youth with autism and their families.

Question # 5

What does your party, if elected, feel will be their greatest challenges with regards to the autism community and why? What are your plans to overcome these challenges?

The best way to overcome challenges is by working together, in partnership. The improvements we have made to the provision of services for children with autism would not have been possible without us having the opportunity to hear the advice and the experiences of parents. We have learned much from the parent community and the progress we have made is the result of that.

Funding is not the only answer to improving services for children and youth with autism. As funding increases and the demand for service grows, we must also build and retain the human resource capacity to absorb this growth. That's why we started a college-level program to train new therapists. We are also working to overcome a significant shortage of child psychologists in Ontario . We will continue to grow the capacity of the system to better meet the growing demand for service in the long-term.

We plan to continue the good work we have already done to improve the learning environment for our children and youth with ASD. We plan to continue building the relationships we have with members of the autism community – with parents, community groups, educators, school boards, and within government.

Question # 6

How will your party, if it forms the next government, ensure families receive the proper services they need when they are faced with linguistic and cultural barriers? As well, we often concentrate our efforts on the children and youth affected by autism in Ontario . What are your party’s plans for adults outside of the preschool and education system, in terms of assigned living, work opportunities, and ensuring these individuals do not slip through the cracks?

We recognize that families with different cultural and linguistic backgrounds can also have different needs. Addressing this need is part of our effort to build the capacity within the service system.

Services for children, youth, and adults with autism must be provided through a collaborative, interministerial approach. By working through interministerial collaboration, we are able to offer a broad range of coordinated services to address the needs of children, youth, and adults with autism as they move along the service continuum.

As announced in our 2007 Budget, our government is investing $200 million more over the next four years to strengthen the developmental service sector. Our government has begun drafting of a new piece of legislation for the developmental services sector. This piece of legislation is the first new piece of legislation in this area since the 1970s. The McGuinty government wants to bring the developmental services sector into the 21st century. We are proposing an enhanced consistent approach to determining eligibility for developmental services by updating the definition of developmental disability, which will benefit autistic adults in that they may have the intelligence to perform daily tasks but not the social skills that help them do so. This new piece of legislation will also allow families and individuals the choice to receive services through a transfer payment agency or to receive funding directly to purchase the services themselves. It will also allow funding to transfer with the client if they move from one community to another. Outside of this legislation, we are adding autism clinical expertise over time to our specialized networks of care, which includes long distance teleconference diagnosis.

Question # 7

Does your party support a National Autism Strategy and if so what will you do to ensure you are working towards this goal? If elected, what would be the components of a National Autism Strategy that Ontario should support?

Our government is on record as supporting a National Autism Strategy.

On November 8, 2006 , Minister of Children and Youth Services Mary Anne Chambers appeared before The Standing Senate Committee on Social Affairs, Science and Technology in Ottawa , where she presented her case for a national autism strategy to benefit children with autism and their families across the country. She was the only elected official across the country who accepted the invitation to appear before the committee. In her presentation, she suggested the federal government consider the following:
• A public awareness campaign to help more people understand autism, including how to socialize and live with those with autism;
• Direct grants or tax deductions for parents/families with children with autism, similar to support for caregivers who provide babysitting services and for people who look after their senior relatives;
• More funding for research on autism;
• Recruitment of more child psychologists to work with children and youth with autism;
• More funding for residential supports to provide respite for parents and help children with autism learn to take care of themselves to some degree;
• Standard certification for service providers nationally; and
• A regulatory body for behaviour analysts and therapists.

The full transcript of the Minister’s presentation can be found at:
http://www.parl.gc.ca/39/1/parlbus/commbus/senate/Com-e/soci-e/10eva-e.htm?Language=E&Parl=39&Ses=1&comm_id=47

Question # 8

There are several legal battles being fought on the issue of ABA and IBI in Ontario . 120 Ontario Human Rights Commission cases under the group name Arzem, the Class Action case of Sagharian, and the Class Action case of Hartley. What will your government do, if elected in power this fall to compensate these families and to reach a fair resolution that will put an end to the legal battles? Will the governing parties categorically say that they will not seek compensation for legal fees which are a major risk for these members of the autism community seeking what they believe is a fair treatment for their children?

Our focus has been, and will remain, improving the services and supports available to children and youth with autism, and their families. Our interest is to work in partnership with families because our experience has demonstrated that working with the parent community yields real results.

The Ontario Court of Appeal decision in the Deskin-Wynberg case left the government with the option of reinstating the IBI age six cutoff. We chose not to because our commitment is to improve services for all children and youth with autism, regardless of age.

The alliance for families with autism
Please contact us “AFA” at
autismafa@yahoo.ca
Please forward all mailing list articles and information to
ktchmeifucan2002@yahoo.ca

Autism
Deskin/Wynberg case
Media Release

April 12, 2007.

Alliance for Families with Autism Disappointed by Supreme Court's Decision to Deny Autism Case.

The Alliance for Families with Autism (AFA) is greatly disappointed by the decision announced today by the Supreme Court of Canada (SCC) to deny leave to appeal to the Ontario autism case known as Deskin/Wynberg. This case has been the subject of litigation in Ontario for several years and is crucial to families with autism. The issues involve access to autism treatment beyond age six and the teaching of children with autism in the school system. The Ontario Autism Intervention Program (AIP) previously had a policy of cutting off treatment to children with autism when they turned six, regardless of their need for continued treatment. In 2005 the Ontario Superior Court issued a 211 page ruling in which it indicated that the Ontario Government was violating the Charter of Rights and Freedoms and that it also violated its own Education Act. Notwithstanding Premier McGuinty's written election promise to remove the age six cut-off from treatment, his government appealed the decision. In a stunning decision in 2006 the Ontario Court of Appeal reversed the decision of the Ontario Superior Court, granting the government the right to continue this discriminatory and unjust practice. The Deskin/Wynberg families sought leave to appeal to the SCC.

"The Alliance for Families with Autism is profoundly disappointed with the news that the Supreme Court will not hear an appeal of the Deskin/Wynberg case. The law, as it stands now following the Court of Appeal decision, is clearly discriminatory and must change. Families with children with autism should not have to rely on government "policies" but on the rule of law to ensure equal and fair access to autism treatment and education. If the politicians and judges think this matter is over with and the file is closed then we have a surprise for them. We will continue to lobby and advocate for the fair treatment of children with disabilities until such time as the laws of this country reflect the spirit of the Charter of Rights." said Sam Yassine, Founding Member of the Alliance for Families with Autism.

- 30 -
For more Information, contact

Cindy DeCarlo
(705) 737-0417
advocate.4kids@sympatico.ca

The Alliance for Families with Autism
Backgrounder
The Alliance for Families with Autism is a new advocacy group.
We believe in working with all political parties, organizations and communities to be true advocates for autism. Autism prevalence is drastically escalating. The rates continue to climb!
We believe that accountability and open communication are essential. We are families that achieved over the past few years a proven track record of accomplishment. Very recently we had a preliminary meeting with Minister Chambers from the Ministry of Children and Youth Services and Marg Spoelstra, Executive Director of Autism Ontario. Next month we will be meeting with Minister Wynne from the Ministry of Education. We are also requesting meeting with Mr. John Tory, Leader of the P.C. party and Mr. Howard Hampton, Leader of the NDP. These meetings are yet to be confirmed.
We strongly believe in a non-partisan approach and that autism deserves the attention and support of all political parties at all levels. We look forward to active alliances with all families, autism supporters and organizations.
We are presently developing our email list. If you wish to have more information about our group or would like to join our free email list, please contact us at autismafa@yahoo.ca
The autism community needs us all working together for their future!
Sincerely,
Cindy DeCarlo, Barrie
Trish Kitching, Sudbury Pat La Londe, Kingston
John McVicar, Kitchener Lisa Prasuhn, Beeton
The Alliance for Families with Autism
Please contact us "AFA" at
autismafa@yahoo.ca

General Information sent to members being added to our email list.

The Alliance for Families with Autism (AFA).

We have five executive members that include parents and a grandparent of children with autism. Our mission is improving the lives of children and adults affected by autism. To provide factual information in a non-partisan approach to all stakeholders. Our vision is ensuring that Canadian children and adults with autism reach their full potential by advocating and lobbying for timely diagnosis, assessment, access to evidence based therapy and services.

We work with all 3 political parties and have met with the following:
- Premier's Office
- John Tory, Leader of the Progressive Conservative Party
- Howard Hampton, Leader of the New Democratic Party
- Minister of Education
- Minister of Children and Youth Services
- Minister of Finance

We have executive members that have participated in government led advisory groups. We organized and facilitated the first ever in Ontario's history, an election debate about autism between the three provincial parties. Please let me know if you would like me to forward a copy of these questions and written responses. We are in the planning stages for our fall event. We also compile and distribute a weekly news mailing of pertinent information on autism from Ontario and across Canada to nearly 1000 members.

I hope this information is helpful. If you require additional information regarding the AFA, please feel free to contact me.

Sincerely,

Pat La Londe
AFA Executive Member

Candlelight VIGIL Media Advisory

Media Advisory
September 26, 2007
For Immediate Release

THE ALLIANCE FOR FAMILIES
WITH AUTISM (AFA)

http://allianceforfamilieswithautism.blogspot.com

Monday, October 01, 2007 from 7:00 – 7:30 pm families and friends of children with autism, from across Ontario , will gather for the second annual candlelight vigil.

The Alliance for Families with Autism (AFA) already has 25 locations across Ontario confirmed for this event and we expect the number of locations to continue to grow. The vigils will take place in front of MPP’s offices, as they are easy-to-find locations. The Ontario Government does hold a great part of our kids (adults too) future in their hands. Although we are in the middle of a provincial election, the vigil is not a political event but instead an opportunity to honour all individuals and families living with Autism Spectrum Disorder (ASD) and other related disorders. In order to build awareness we have invited candidates from all three of the main political parties to each and every location across Ontario .

The annual event is to ensure everyone in Ontario is aware of the extent of the challenges we face in the world of autism. There are more than 20,000 people affected by autism in this province!

For an update of locations, visit the AFA at

http://allianceforfamilieswithautism.blogspot.com/2007/09autism-vigil-confirmed-locations.html

For more information, contact:

Cindy DeCarlo – Barrie Trish Kitching – Sudbury
advocate.4kids@sympatico.ca ktchmeifucan2002@yahoo.ca
(705) 737-0417 (705) 222-9432

Pat La Londe – Kingston John McVicar – Kitchener
palalonde21@aol.com findingnewmarkets@sympatico.ca
(613) 542-6477 (519) 574-2333

Lisa Prasuhn
lisa.prasuhn@sympatico.ca
(905) 729-4029

THE ALLIANCE FOR FAMILIES WITH AUTISM (AFA)

http://allianceforfamilieswithautism.blogspot.com

AFA Backgrounder

The Alliance for Families with Autism (AFA) is a non-partisan group. We work will all of the three main political parties. Throughout the year we have had meetings with John Tory, Leader of the Progressive Conservative Party, Howard Hampton, Leader of the New Democratic Party, the Premier’s office, senior officials of the Ontario Government including Minister of Education and Minister of Children and Youth Services.

AFA Priorities for Action

1) Implement all the recommendations from the Autism Reference Group Report to the Ministry of Education and Ministry of Children and Youth Services.
http://www.edu.gov.on.ca/eng/document/nr/07.02/autismFeb07.pdf

2) Direct Funding Option (DFO)/Direct Service Option (DSO) choice for Autism Intervention Program (AIP) with no waiting list and seamless transition to similar programming in school boards for children who require ongoing support.

3) Standard certification for service providers with a regulatory body of behaviour analysts and therapists. Increasing the number of psychologists to work with children and adults with autism, including a graduate level ABA teaching program at universities. Allow third party Behavioural consultants specialized in autism, senior therapists and therapists into schools.

4) Continuum of Government funded services and programs. Specialized services such as speech and occupational therapy need to be delivered in a timely manner. Programs such as Special Services at Home (SSAH) and Assistance for Children with Severe Disabilities (ACSD) need to support all families with autism and give clear guidelines to their key elements of administration.

5) Creation of National Autism Strategy that would include Federal-Provincial partnerships to ensure adequate resources and standards to provide Canadians with timely diagnosis, assessments, treatments, supports and research.

AFA Events

The Alliance for Families with Autism (AFA) held a three-party political debate on autism policies and programs in June, 2007. We felt all informed voters would be interested in the information from this unprecedented and unique event. The debate was a great success and included such speakers such as Shelley Martel from the New Democratic Party, Frank Klees and Christine Elliot from the Progressive Conservative Party, and Minister Wynne from Education, as well as Minister Chambers from Children and Youth Services from the Ontario Liberal Government.

The Alliance for Families with Autism will be hosting the second annual Candle Light Vigil on Monday, October 01, 2007 from 7:00 – 7:30 pm. We want to tell the world, with our candles, that every individual with ASD has the right to shine. We want to honour all individuals and families living with Autism Spectrum Disorder and related disorders. For an update of locations please visit us at http://allianceforfamilieswithautism.blogspot.com/2007/09/autism-vigil-confirmed-locations.html

Our November event will be unprecedented and unique, as was the debate in June. We have arranged with all three parties, the elected government will participate in a “Town Hall” Meeting with the autism community. This meeting will include the Ministers from Education, Children and Youth Services, as well as Community and Social Services. This event will allow our community to meet the Ministers responsible for those ministries and have an opportunity to ask questions and make comments to the new government.

AFA Mailing List

The Alliance for Families with Autism (AFA) will continue to compile and distribute weekly news mailings of pertinent information on autism from Ontario and across Canada to ensure that our community has information available. We appreciate all of the positive comments and feedback we have received regarding our mailings! If you are interested in joining our email list please contact us at autismafa@yahoo.ca

About the AFA

Our executive members include parents and a grandparent of children with autism. Our mission is improving the lives of children and adults affected by autism. To provide factual information in a non-partisan approach to all stakeholders.

Cindy DeCarlo – Barrie Trish Kitching – Sudbury
advocate.4kids@sympatico.ca ktchmeifucan2002@yahoo.ca

Pat La Londe – Kingston John McVicar – Kitchener
palalonde21@aol.com findingnewmarkets@sympatico.ca

Lisa Prasuhn – Beeton
lisa.prasuhn@sympatico.ca

Candlelight Vigil
October is Autism Awareness Month
Join your community for the
2nd ANNUAL CANDLELIGHT VIGIL
Monday, October 01, 2007
7:00pm to 7:30pm
Proudly organized by
The Alliance for Families with Autism (AFA)

For those of us who remember last year’s event, it was cold and rainy. Yet everyone who participated in the first annual Candlelight Vigil truly felt that is was something very wonderful and worthwhile, and wanted to ensure another vigil would be organized this year. The vigil is not a political event. There will be no signs however there will be lots of candles across the province in your community. We want to honour all individuals and families living with Autism Spectrum Disorder (ASD), related disorders.
We want to tell the world, with our candles, that every individual with
ASD has the right to “SHINE”.

October 1st, 2007
marks the start of Autism Awareness Month.
What began as an idea from a mother of a little boy with autism in Windsor , ended up as a huge event spanning from Windsor to Ottawa and from Toronto to Northern Ontario . It was the beginning of an annual event to ensure everyone in Ontario become a little more aware of the extent of the challenges we face in the world of autism.
There are more than 20,000 people affected by autism in this province!
We already have a number of locations confirmed for the event. You can contact the AFA directly at autismafa@yahoo.ca if you are interested in attending or organizing a vigil at your local MPP’s office. It only takes one person per riding to stand in front of the office with a candle. We have chosen the MPP offices as locations for this event because it is the Ontario Government that holds such a great part of our kids (adults too) future in its hands.
You can also visit our blog at http://allianceforfamilieswithautism.blogspot.com
for updates of locations as they become available.
If we had 50 people commit then we could cover 50 ridings!

“It doesn’t matter if your child is 5 or 45, just get out there and light your candle.
Sing a song with the kids. Laugh. Cry. Cheer and wave to the passing motorists. You might even educate a few more people in your community about autism. My wife wears a t-shirt with a picture of our grandsons and the words I Love My Grandsons With Autism.” said John McVicar, Executive Member of the AFA and lead organizer of the event.

The more participation we receive the more we are able to build autism awareness. So invite your family, friends, teachers, neighbours, co-workers, etc. Let’s make this an event that the entire Autism community can be proud of!!!!!!
We look forward to hearing from you!
The Alliance for Families with Autism (AFA)
autismafa@yahoo.ca

Contact our primary organizer to add your location to our blog!
John McVicar - findingnewmarkets@sympatico.ca
If you cannot make a location in your community, light a candle with your family
The Alliance for Families with Autism has made this past years’ Candlelight Vigil very special by remembering a mother who tragically lost her life at a young age, leaving behind a young boy, with Autism. We light a candle for Miles.

October 9, 2007: Midnorth Monitor (Osprey Media) "A Mother Remembered - Autism Has a Face"

A mother remembered - autism has a face

by Brian Channon

Tuesday, October 09, 2007 - 17:00

Local News - Resting on the strong shoulders of his step-grandfather a young boy asks, “When are they going to say something about my Mommy?”

It has been three weeks since Stephanie Dye of Espanola passed away leaving her five-year-old autistic son, Miles, without a mother. Dye, who was instrumental in organizing both annual candlelight vigils in Espanola, the first last year and the second, which was held in Espanola last week, in cooperation with the Alliance for Families with Autism (AFA), was considered a true crusader for the cause.

After the diagnosis of her son, Dye threw all her time and energy into learning all she could about the disorder to ensure the best care for her son.

Dye agreed with the AFA, that building awareness was a key element in supporting autism. She would have been proud to know that on Monday, October 1, during the second annual candlelight vigil, a soft glow illuminated 28 locations within the province of Ontario, including the office of Ontario Member of Parliament Mike Brown in Espanola.

People lit their candles in memory of Stephanie Dye and in honour of those families with children affected by autism.

Although this wasn’t a politically driven event, the importance of government awareness is recognized as being crucial to the overall outcome of autism itself.

“Governments at all levels need to support the research, support the measures that will make it easier for families, for the schools and for the public to engage themselves while in this very challenging position,” said Algoma-Manitoulin federal Member of Parliament Brent St. Denis in his opening statement.

St. Denis had been asked to attend on behalf of Brown.

Brown was unable to attend the gathering.

“If there is a pill involved it’s easy to get medical coverage, Ontario Hospital Insurance Plan (OHIP) in the case of Ontario. But, there is no pill that I’m aware of to deal with autism and that’s sort of an unfortunate line that’s drawn when it comes to what’s covered and what’s not.”

The financial burden is overwhelming, with behavioral modification therapy (IBI), costing upward of $70,000 per year for each child. Autism Spectrum Disorder (ASD), which was once considered a rare neurological disorder, now afflicts approximately one in every 200 children in Canada and over 20,000 people within Ontario alone, according to the AFA.

As the years pass, those numbers continue to escalate expeditiously, according to Statistics Canada. The more those numbers grow, the longer the waiting list becomes to access treatments. Without proper research and funding, families are left to struggle and face the burden alone.

In the case of Wendy Marsh of Espanola, her challenges are even more consuming as she raises her grandson, Miles, with the help of her husband. Marsh admits she would do anything for her grandson. However, disabled by grief of the recent loss of her daughter, she is constantly explaining to Miles why he isn’t able to go home to the more regimented lifestyle he was accustomed to with his mother. The most common symptom of autism is the inability to adapt to change, which often causes frustration in the form of tantrums.

Blake Priddle, 13, student of AB Ellis Public School, was diagnosed with autism while in senior kindergarten. With candle in hand, he describes some of the common challenges associated with the disorder.

These range from dealing with change, learning how to socialize, as well as his struggles with language and writing skills.

According to Priddle, the respect and guidance he receives from his teachers is irreplaceable. The school has developed programs that provide children with an informed overview of various forms of autism.

“Kids from the fifth to the eighth grade, whoever is interested in being in the Peer Buddy Program, can be in it,” emphasized Priddle. “We have toonie Tuesday once a month with vegetables and fruit. And, what we do is watch videos about different kinds of autism. We talk about low functioning autism because hey, it’s not all about me.

“It can help other kids with autism and other disabilities too. So that way they’ll know how to work with other kids besides people like me with Asperger Syndrome or high functioning autism. So, a lot of the kids really liked the program and they think that other schools should have it, to help people understand autism,” said Priddle.

Awareness and understanding of those afflicted by the disorder is central to creating a healthier, more patient society. Priddle’s mother, Joanne Beyers said, “Having Blake has enriched my life. Everyday he shows me a different way to look at things.”

As the candles were being extinguished and the holders shuffled back to their cars it was obvious that the AFA with the help of the late Stephanie Dye, had fulfilled their wish, at least in Espanola, “that every individual with ASD has the right to shine.”

Media Release - April 2, 2007

Alliance for Families with Autism Welcomes Senate Report on Autism Crisis

The Alliance for Families with Autism (AFA) welcomes the issuance of the Report Pay Now or Pay Later: Autism Families in Crisis which was tabled in the Senate on March 29, 2007. The report, by members of the Standing Senate Committee on Social Affairs, contains numerous recommendations for the federal government, including collaboration with the provinces for purposes of developing a National Autism Strategy to address financing for autism therapy.

“This report clearly highlights the seriousness of the autism crisis across this country and the need for the federal government to demonstrate leadership and put its budget surplus to good use improving access to treatment. The autism community has been asking for this for years and we urge the federal and provincial governments to implement the recommendations of the report in a timely manner” said Cindy DeCarlo, founding member of AFA.

In December 2006 the U.S. government passed The Combating Autism Act which will increase federal U.S. spending on autism diagnosis, treatment and research by a further $1 billion over five years. In contrast, the recent Canadian federal budget of March19, 2007 did not allocate one cent for autism programs.

“Canada urgently needs to recognize the autism crisis and take steps to address the problems. While this report does not go far enough in its recommendations and won’t solve the problems tomorrow, there commendations for federal leadership in the development of a National Autism Strategy and contributing to the funding of treatment pursuant to national standards with measures of accountability are certainly heading in the right direction. We call on the federal government to accept these recommendations and make them a priority” said Sam Yassine, founding member of AFA.

For more Information, contact:
Cindy DeCarlo
(705) 737-0417
advocate.4kids@sympatico.ca
Pat La Londe
(613)542-6477
palalonde21@aol.com

The Alliance for Families with Autism
Backgrounder The Alliance for Families with Autism is a new advocacy group.
We believe in working with all political parties, organizations and communities to be true advocates for autism. Autism prevalence is drastically escalating. The rates continue to climb!

We believe that accountability and open communication are essential. We are families that achieved over the past few years a proven track record of accomplishment. Very recently we had a preliminary meeting with Minister Chambers from the Ministry of Children and Youth Services and Marg Spoelstra, Executive Director of Autism Ontario. Next month we will be meeting with Minister Wynne from the Ministry of Education. We are also requesting meeting with Mr. John Tory, Leader of the P.C. party and Mr. Howard Hampton, Leader of the NDP. These meetings are yet to be
confirmed.

We strongly believe in a non-partisan approach and that autism deserves the attention and support of all political parties at all levels. We look forward to active alliances with all families, autism supporters and organizations.

We are presently developing our email list. If you wish to have more information about our group or would like to join our free email list, please contact us at autismafa@yahoo.ca

The autism community needs us all working together for their future!

Sincerely,
Cindy DeCarlo – Barrie, Trish Kitching – Sudbury,
Pat La Londe – Kingston, John McVicar, Kitchener, Lisa Prasuhn- Beeton,
The Alliance for Families with Autism
Please contact us "AFA" at autismafa@yahoo.ca

Saturday, March 31, 2007 Ottawa Citizen

We Need a National Autism Strategy
http://www.parl.gc.ca/39/1/parlbus/commbus/senate/Com-e/soci-e/rep-e/repfinmar07-e.pdf

By Jim Munson
It's not unusual to see people on Parliament Hill with signs and posters advocating one issue or another. But something about Andrew Kavchak was different. He was stressed, he was anxious and he had a personal story to tell. His son is autistic.

It breaks your heart to listen to what is a personal crisis for the Kavchak family and to what has become a crisis from coast to coast to coast. For thousands of families across this country, the impact of this neurological condition has been devastating.

In the Senate we launched a study through the Standing Committee on Social Affairs, Science and Technology.

We heard from 53 witnesses, including autistic individuals, parents of autistic children, advocacy groups, health professionals, autism researchers and federal department representatives, as well as one provincial minister.
Autism is a complex, lifelong, developmental disability on the rise in Canada where it affects one in 166 people. It is three to four times more likely to affect boys than girls.
Autism affects people in different ways. On one end of the spectrum, people are isolated by compulsive behaviours and speech disorders. Others are able to participate in society with varying degrees of support.
People with autism are often closed off from their family, friends, teachers, neighbours and society as a whole. Research offers lots of possible reasons why the number of people affected is growing, but there is no cure. Canada has a patchwork approach to autism treatment and support. Available services vary from province to province, and funding for such services depends on provincial policies and budgets. Treatment for autism can be expensive, up to $60,000 annually for IBI (intensive behavioural intervention).
Many families are facing financial crises to ensure their children obtain treatment. It requires a multidisciplinary tream: medical practitioners, psychologists, occupational therapists and special-education providers all have a vital role to play in the treatment of autism.

Families are on their own in Canada to obtain information, services, support and treatment for autism. It's clear that we must do more as a society. Without treatment and support, we lose the potential contributions that people with autism can make.

In many cases, without treatment, people with autism are institutionalized at a huge cost to society.

Parents shouldn't have to move from province to province to find the best treatment for service.
Parents shouldn't have to live on the edge of a breakup because of the stress in brining up an autistic child.

Parents shouldn't have to sell or remortgage their homes to pay for costly treatment.
In its final report on the Inquiry on Funding for the Treatment of Autism, "Pay Now or Pay Later: Autism Families in Crisis", released this week, senators make it clear that the federal government must implement a national autism strategy, in collaboration with the provinces and territories.
What is needed is a level playing field where everyone has equal access to equal services. The committee is encouraged by recent steps taken by the federal govenrment to address autism concerns and supports the stakeholder symposium on autism announced for 2007. However, plans need to be more specific.

Yes, treatment is expensive. But as one witness said, "If you pay for it now, look at the return you will get on your investment. The peope with autism will get our in the real world and get jobs, and that will stimulate the economy. Or you can pay later, which means they will go into group homes and it will cost the taxpayers a lot more int he long run to keep them there."
There is no need for families to face autism alone. We are a rich country with budget surpluses. And despite our resources, our response to autism has led to each province having a different prescription in dealing with the issue. We must get our acts together in this country.
We owe it to these families, to society and to ourselves to share not only the burden of autism, but also the collective responsibility to act.

Jim Munson is a member of the Senate of Canada.

TOWN HALL MEETING March 18th AFA

2008-02-29T20:52:00.000-08:00

MEDIA ADVISORY

For Immediate Release
February 29, 2008

AUTISM TOWN HALL MEETING WITH MINISTER MATTHEWS AND MINISTER WYNNE

Toronto – February 29, 2008 – The Alliance for Families with Autism (AFA) is pleased to announce we are hosting a Town Hall Meeting regarding the issues surrounding autism on Tuesday, March 18, 2008. The meeting will include Ministers from the Ministry of Children and Youth Services as well as the Ministry of Education.

In attendance will be Hon. Deb Matthews, MCYS and Hon. Kathleen Wynne, MEDU. All parents and families are welcome to attend this unprecedented event. It is a unique opportunity for the autism community to voice their opinion with regards to current programs and receive an update from both Ministers regarding the direction of their ministries for the future.

The Alliance for Families with Autism (AFA) is a volunteer organization. Our executive members include parents and a grandparent of children with autism. Our mission is improving the lives of children and adults affected by autism. We continue to provide factual information in a non-partisan approach to all stakeholders.

LOCATION: Bur Oak Secondary School , 933 Bur Oak Avenue , Markham , Ontario

DATE: Tuesday, March 18, 2008 6:30 pm pm

Following the Town Hall Meeting there will be media availability at 8:30 pm. Executive members from the AFA as well as Hon. Deb. Matthews and Hon. Kathleen Wynne will be present for interviews.

For more information please contact,

Cindy DeCarlo (705) 737-0417 advocate.4kids@sympatico.ca

Trish Kitching (705) 222-9432 ktchmeifucan2002@yahoo.ca
........................................................................................................................................................

THE ALLIANCE FOR FAMILIES WITH AUTISM (AFA)

Please contact us at autismafa@yahoo.ca

Please forward articles & information to ktchmeifucan2002@yahoo.ca

Check out the news article BLOG sent out with each mailing.

http://autismnewsarticles.blogspot.com

Candle Light Vigil Scrap Book October 1st 2007

2007-10-01T19:38:00.000-07:00

VIGIL LOCATIONS update September 30th!!!

2007-09-30T15:50:00.000-07:00

This list is read as follows: MPP, Contact Person, Vigil location!!! See you there.

Wayne Arthurs -Yvette Fiala - 213- 1550 Kingston Rd Pickering Ontario

Rick Bartolucci – Trish Kitching – 100 Elm St., Sudbury, Ontario

Mike Brown – Wendy McLelland – 5 Elizabeth Walk, Elliott Lake, Ontario

Mike Brown Campaign Office (Stephanie Bye’s town of Espanola)– Roxanne Belanger – 307 Albert Street & Hwy 6 (Right in Espanola)

Mike Colle – Linda Silva – 2882 Dufferin Street, Toronto, Ontario

Leona Dombrowsky Campaign Office (Ernie Parson’s MPP has retired) - Andrea Quinn - 308 North Front St. Belleville, Ontario

Garfield Dunlop - Shawna Judson– 14 Coldwater Rd. W., Orillia, Ontario

Kevin Daniel Flynn – Tina Triano – 2330 Lakeshore Rd. W., Oakville, Ontario

Hon John Gerretsen – Pat LaLonde - #2, 303 Bagot St., Lasalle Mews, Kingston, Ontario

Andrea Horwath - Rose Bushey - 720 Main Streer E., Hamilton, Ontario

Frank Klees – TBA - - 210- 650 Highway 7 E Richmond Hill, Ontario

Peter Kormos – Brenda Roussel - #103, 60 King St., Welland, Ontario

Dave Levac – Sherry Bailey - #101 – 96 Nelson Street, Brantford, Ontario

Hon. Monte Kwinter – Gideon Sheps – 539 Wilson Heights Blvd. Downsview, Ontario

Shelley Martel – Lily Blais - #15, 5085 (Hanmer Valley Shopping Centre) Highway 69 North, Hanmer, Ontario

Gerry Martiniuk – John McVicar - 2- 410 Hespeler Rd, Cambridge Ontario

Ted McMeekin – Chuck Learn – 299 Dundas Street E., Waterdown, Ontario

John Milloy – Peter and Nancy Miles - #6C, 1770 King St. E., Kitchener, Ontario

Julie Munroe – Jackie Buchanan - 18977 Leslie St., P.O. Box 1129 Sharon Ontario

David Orazietti – Dennis Lendrum – 726 Queen St. E., Sault Ste. Marie, Ontario

Michael Prue – Michelle Quance – 1821 Danforth Avenue, Toronto Ontario

Khalil Ramal – Brad and Cynthia Bouffard - #16-771 Southdale Rd. E., London, Ontario

Bob Runciman – Wanda Burns – 243 Perth Street – Brockville, Ontario

Greg Sorbara – Pat Congi – Unit AU8-140 Woodbridge Avenue, Woodbridge, Ontario

Joseph N. Tascona – Tanya Stephenson – 36 Mulcaster St., Barrie, Ontario

Jim Watson – Bonita Miedema – 2249 Carling Avenue, Suite 201, Ottawa, Ontario

Jim Wilson – Shannon Lyle - #28, 180 Parsons Road, Alliston, Ontario

Elizabeth Witmer – Kathryn Craig - 375 University Ave E Waterloo, Ontario

Alex Yuan – Julie Finni – Major MacKenzie at Bayview, Richmond Hill, Ontario

AFA Fall Update- September 22nd 2007

2007-09-22T12:00:00.001-07:00

THE ALLIANCE FOR FAMILIES WITH AUTISM (AFA)

FALL 2007 UPDATE

We felt it was necessary and important to give the autism community an update of what we have done and where we are heading for the fall!

Our executive members include parents and a grandparent of children with autism. Our mission is improving the lives of children and adults affected by autism. To provide factual information in a non-partisan approach to all stakeholders.

Throughout the year we have had meetings with John Tory, Leader of the Progressive Conservative Party, Howard Hampton, Leader of the New Democratic Party, the Premier’s office, senior officials of the Ontario Government including Minister of Education and Minister of Children and Youth Services.

During these meetings the following priorities for action were addressed:

1) Implement all the recommendations from the Autism Reference Group Report to the Ministry of Education and Ministry of Children and Youth Services.
2) Direct Funding Option (DFO)/Direct Service Option (DSO) choice for Autism Intervention Program (AIP) with no waiting list and seamless transition to similar programming in school boards for children who require ongoing support.
3) Standard certification for service providers with a regulatory body of behaviour analysts and therapists. Increasing the number of psychologists to work with children and adults with autism, including a graduate level ABA teaching program at universities. Allow third party Behavioural consultants specialized in autism, senior therapists and therapists into schools.
4) Continuum of Government funded services and programs. Specialized services such as speech and occupational therapy need to be delivered in a timely manner. Programs such as Special Services at Home (SSAH) and Assistance for Children with Severe Disabilities (ACSD) need to support all families with autism and give clear guidelines to their key elements of administration.
5) Creation of National Autism Strategy that would include Federal-Provincial partnerships to ensure adequate resources and standards to provide Canadians with timely diagnosis, assessments, treatments, supports and research.

We all know that Ontario’s provincial election is right around the corner. The Alliance for Families with Autism (AFA) felt it was extremely important to our community to ensure that we had commitments from each of the three main political parties. We held a three-party political debate on autism policies and programs in June, 2007. We felt all informed voters would be interested in the information from this unprecedented and unique event. The debate was a great success and included such speakers such as Shelley Martel from the New Democratic Party, Frank Klees and Christine Elliot from the Progressive Conservative Party, and Minister Wynne from Education, as well as Minister Chambers from Children and Youth Services from the Ontario Liberal Government.

Soon the election will be over and we will know who will be leading the province of Ontario for the next four years. What will be next for the autism community after the election?

During this election period, The Alliance for Families with Autism has continued to work with all three parties. That work has led us to our upcoming event for November. This event will be unprecedented and unique, as was the debate in June.

We have arranged with all three parties, the elected government will participate in a “Town Hall” Meeting with the autism community hosted by The Alliance for Families with Autism. This meeting will include the Ministers from Education, Children and Youth Services, as well as Community and Social Services. This event will allow our community to meet the Ministers responsible for those ministries and have an opportunity to ask questions and make comments to the new government. The “Town Hall” Meeting will take place in November at a local school in the GTA. The date and location will be confirmed following the election.

We will continue to advocate for our community to ensure every person with autism will receive the support and services they require. We believe that there are different ways to advocate for our community and that is what makes our community so unique. Those different styles of advocating will only bring more attention to the issues and propel our cause even further.

The Alliance for Families with Autism (AFA) will continue to compile and distribute weekly news mailings of pertinent information on autism from Ontario and across Canada to ensure that our community has information available. We appreciate all of the positive comments and feedback we have received regarding our mailings!

As well as October being election month, it is also Autism Awareness Month. Last year we were involved in a province wide candlelight vigil. We have had a number of families request that this be an annual event. The Alliance for Families with Autism will be hosting the event this year. The vigil will take place on Monday, October 01, 2007 from 7:00 – 7:30 pm. The vigil will not be a political evening, although it will be held at MPP riding offices across Ontario. To further inform and build awareness we have invited all candidates to partake in the event from the three main political parties. We want to tell the world, with our candles, that every individual with ASD has the right to shine. We want to honour all individuals and families living with Autism Spectrum Disorder and related disorders.

Please find a list of confirmed locations at our blog at http://allianceforfamilieswithautism.blogspot.com

If you are interested in participating at a different location please contact our primary organizer John McVicar at findingnewmarkets@sympatico.ca

For those of you attending candlelight vigils on October 01, 2007… please remember to light a candle for Miles when you are lighting a candle for your family.

Sincerely,

The Alliance for Families with Autism (AFA)

Executive Members -

Cindy DeCarlo – Barrie
Trish Kitching – Sudbury
Pat La Londe – Kingston
John McVicar – Kitchener
Lisa Prasuhn – Beeton