ONTARIO ADULT AUTISM

RESEARCH AND SUPPORT NETWORK
OAARSN NEWS BULLETIN
18 August 2008




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ONTARIO NEWS AND ISSUES


Summer 2008 has been enlivened in Ontario by debate over the Ontario Government's proposed legislation to replace the act originally passed in 1974 to govern funded services for developmental disabilities. Advocates for persons and families who live with disabilities had been hoping that the four-year process of discussing "transformation" would lead to more transparency and choice. But Bill 77, introduced in May 2008, with little advance notice and apparently intended to be swiftly enacted, has disappointed most stakeholders. Bowing to popular demand, the Standing Committee on Social Policy has held hearings in four centres and received written submissions.

The process is not over yet! The new legislation will shape the provision of funded services in Ontario for the next generation, so everyone who lives or works with autism spectrum disorders will be affected. Please review the material at these links and take any opportunity to speak up for the values and principles that will enable all persons with developmental disabilities to have more choice and control over their own lives.


Disability groups say Liberal bill is seriously flawed
Judith McGill and Janis Jaffe-White were interviewed by Helen Henderson of the Star about Bill 77 and the Provincial Ad Hoc committee's concerns. The article, in the Star of 16 August, section L 12, begins: 
"They will not go away. They will not play dead. A coalition of community groups is among a growing faction determined to keep Queen's Park honest in its bid to change laws affecting some 300,000 Ontarians diagnosed with developmental disabilities....
Click on title to read the full article online.


Scores of people, often as representatives of organizations but also on their own, presented their comments on Bill 77 to the Standing Committee during the first week of August. Their oral presentations are all recorded--a powerful summary of views of social policy--and may be read at the following links:
Committee Transcripts: Standing Committee on Social Policy - August 05 2008

Link to Text of Ontario Legislature Bill 77 (2008) in English and French, as submitted for first and second readings:

Click for a
“plain-language compendium” version of Bill 77:

 
A Provincial Ad Hoc Working Group, convened by Judith McGill, and representing 14 organizations in seven regions of Ontario, produced a working paper which also formed the basis of spoken presentations to the Standing Committee on Social Policy in the first week of August.
Read this paper and its summary of recommendations


Link to written brief by the Individualized Funding Coalition for Ontario
which contains references to various research papers supporting the approach advocated by IFCO.

Click for a one-page Framework for Individualized/Direct Funding, summarizing the need to keep these key functions separate: planning and facilitation; allocation; direct service; peer support/advocacy.

Relevance to Autism Spectrum Disorders
For those of us concerned with autism spectrum disorders (ASD), Dr Glenn Rampton, CEO of Kerry’s Place Autism Services, and Margaret Spoelstra of Autism
Ontario
both made presentations on the first day. Among the concerns they noted about issues for people with ASD:

1. The needs of adults with ASD were not properly considered in the preliminary stages of the bill;
2. An integrated legislative framework is needed to enable lifelong planning and access to supports and thus to overcome the discontinuities of supports and services that followed the separation of developmental services and children’s services in 2003, and to cross sectors including mental health, education and justice as well [to which we would add physical health].
3. Employees of application centres may not have the specific skills and knowledge to assess the highly complicated and specific and individualized needs of persons with autism.
4. More resources will have to go into services and supports, as many adults with ASD have never had adequately funded help, and numbers of children identified on the autism spectrum have been increasing dramatically.
 
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Bridges-Over-Barriers: towards supported decision-making

Something new is being pioneered in Ontario by several men who live with quite severe challenges of autism. As they do not speak with their voices, other people might assume that they have nothing to say—even that they do not think or feel. But they are very expressive, on many topics, supported by AAC technology (alternative and augmentative communication) and the presence of family and friends who believe in them. The idea of meeting regularly began with one of the men, who also proposes agenda topics and acts as host. Family members and friends just facilitate the dream in practical ways--and listen! The men gather in Guelph from all over southern Ontario.

The gatherings are so moving and powerful, it seems good to share the idea with others. The pioneers in 2004 began with a  dream of “Bridges-Over-Barriers” as “a centre for friends and family who live with the challenges of autism to come together to share support, ideas and community..... We have been developing our skills as communicators and sharing technology ideas and friendship. We want to extend this community of pioneers to include more people. We would like there to be more opportunities for others to benefit from our experience, and to encourage and train more people to support those of us with communication and movement disorders.”

Members of Bridges-Over-Barriers share the philosophy of "People First": "Nothing about me without me" and "Though I may not speak with my voice, I have plenty to say." They share a vision of helping more adults who use supported typing and other forms of AAC to express their thoughts and dreams. Three years ago, the idea began of asking family and friends to give to a fund that would enable Bridges to start helping others.

Friends and families of the men like the potential of Bridges to help with supported decision-making, and are supporting their efforts to realize the vision.

Link to the Bridges-Over-Barriers webpage
Newsletter 5  contains more information on specific projects.


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SPECIAL OPPORTUNITIES FOR ARTISTS


1. Announcing an exciting partnership between Spark of Brilliance and the newly formed Social Innovation Generation (SiG) initiative of the
University of Waterloo.

Judith Rosenberg describes an opportunity to submit artwork to be juried and ultimately installed in the new location/art gallery in Kitchener. Click for poster with all details

The invitation is extended to all Spark of Brilliance communities and to Kitchener, the future site of a new Spark of Brilliance Chapter, in the near future, to Creative Mentors and associates and friends.  Submissions can include: paintings, sculpture, photography, textile art, pottery, glass, paper sculpture, mixed media, etc.

You are asked to send photographs of your work to Spark of Brilliance via email to: info@sparkofbrilliance.org or drop off photographs to the Spark of Brilliance office at 5420 Highway 6 North, on the Ignatius Jesuit Grounds (Orchard Park) in the Canadian Mental Health Association building to the attention of Marcey Gray or Judith Rosenberg. You may leave your photographs with CMHA reception and ask to have them placed in the Spark of Brilliance mailslot.

Please submit your photographs no later than AUGUST 22, 2008 BY CLOSE OF BUSINESS (5:00 PM).  If you have any questions please do not hesitate to contact Judith at 519-766-4450 X 237.


2. Haadd initiative for artists on the autism spectrum
In order to promote the work of artists in the autism community and to raise additional funds for our Joseph Umbrico Bursary and Grant Programme, Haadd seeks submissions to be considered for a collection of note-cards to be launched prior to the 2008 holiday season. The entries will be reviewed by a panel of artists and Board members. An honorarium of $500 will be awarded to the artist whose submission is chosen. The successful artist will be asked to sign a waiver indicating that he/she has been paid for the piece and granting permission for Haadd to use it solely for the purpose described above.  Click for the full announcement


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CALLS FOR HELP



We are often asked for help in finding professionals who can assess disabilities, and thus are glad to know of this professional organization, whose members are distributed around Ontario.

Canadian
Academy
of Psychologists in Disability Assessment

http://capda.ca/

The website description is as follows:

CAPDA is an organization of senior psychologists who practise primarily in the areas of psychological or neuropsychological assessment of disability and impairment.

There are strict requirements for membership and all members are bound by comprehensive standards which guide their practice and outline their obligations to the individual assessed and to the referral source.

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ANNOUNCEMENTS OF EVENTS

Please send submissions for this news bulletin or for the OAARSN Calendar and Bulletin Board in plain text format by email to ebloomfi@uoguelph.ca with "announcement" at the beginning of the subject line.
Please provide details of the following as BRIEFLY as possible: 
 
Name of Event
 Main Speakers and Topics of Event 
 Date of Event 
 City and Location of Event
 Contact information to learn more about event
 URL Link for more information/registration 

 Please Do Not Send Files Or Brochure Attachments

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Announcing Series of Events

PLAN Institute offers
Weaving the Ties That Bind
Online Training Course for Facilitating Social Support Networks
"Facilitated social support networks are an effective way to address the isolation and loneliness of many people living on the margins of our society. These networks (also known as “circles of friends”) are proven to contribute to the health, safety and well being of individuals who are vulnerable as a result of age, disability or social circumstance."
Click on title for details of availability and to register--for September, October, or November.

Fall 2008, between October 18 and November 29, in Oshawa
Compassion in Action: Open Mind, Open Heart, Skilful Means
an 8-part introductory seminar series in compassionate practices with Felicia Jervis.
THE HEART OF THE MATTER: Some children and adults express themselves through actions that are at times difficult to understand and support safely. These actions may include: occasional withdrawal or aggressive acts towards self, others and property. These actions must be understood not as challenging behaviors that need to be controlled or eliminated, but rather as communicative acts that often speak of the pain of humiliation and rejection, and a yearning to belong....
Click for full brochure and how to register in the workshop series

Click to read "When children hurt themselves"
by Felicia Jervis in BLOOM magazine on the Bloorview website


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Announcing Individual Events


September 4-7, 2008
US Autism & Asperger Association presents
2008 International Conference in San Antonio, Texas
featuring Paul Shattock and Doris Rapp
Conference Theme: Treating Autism as a Medical Disorder:
Bringing Biomedical Treatments and Behavioral & Developmental Therapies Together

Click for overview and early registration



September 17-18, 2008: in Ottawa and Cornwall
Dennis Debbaudt’s "Autism Risk & Safety Management" Workshop
Autism Ontario is very pleased to be able to provide the Ottawa and Upper Canada (Cornwall) communities a workshop providing valuable information on Autism Risk & Safety Management by Dennis Debbaudt.

For more information regarding Dennis Debbaudt, visit his website www.autismriskmanagement.com
Sessions at each workshop:
The morning session is for Parents and Care Providers.

The afternoon session dedicated to Law Enforcement, Fire and Rescue, First Response Teams and Criminal Justice Professionals.
For more information regarding the
Ottawa workshop, please email nancy@autismontario.com
For more information regarding the
Cornwall workshop, please email autismcornwall@gmail.com or visit their chapter website: www.autismontario.com/uppercanada


October 3-5, 2008, in Ottawa
Family Alliance Ontario Annual Conference
Engaging Families and Building Bridges
Visit the Family Alliance Ontario website at this link for full information, including an important note about booking hotel rooms.  http://family-alliance.com/conference.html
Message from the organizers:
Each year the Family Alliance Ontario, in partnership with our local family networks, holds a conference for families and friends. We move the conference around the province and this year it will be held in Ottawa. We have again chosen a setting that is appropriate for a family oriented conference and hope you will consider coming with your family.
  
We are a group rich in knowledge, empathy and inspiration and have much to offer each other in the way of support. This year, as an added bonus for those attending, there will be a Sunday morning workshop with Michael Kendrick. Many of you know Michael through his workshops and articles as a person who practices his belief that "people with disabilities can guide us as to how we must change but we must first be willing to be led." Michael will facilitate this opportunity for us to collaborate with friends and allies on how to impact and influence policies for people with developmental disabilities and their families. You are aware of the troubling direction many of the new policies and legislation is taking. We are inviting our friends, allies and colleagues to work with us to build innovative, impactful approaches to government. It is not enough to open a pathway to direct funding and then not fund it at all as happened with the Passport program this year; we also share with you some grave concerns about directions in Bill 77, the new Developmental Services Act.

As you know, the Family Alliance Ontario continues as a member of the Partnership Table to advice on the "Transformation of Developmental Services." As the only provincial organization at the Table representing families along with only one member representing People First Ontario, it has been a difficult, uphill journey. The support and advice of our many friends, partners and colleagues has been invaluable throughout this process.
Since the beginning of FAO's attendance at these meetings, we have pressed continuously for more family and advocate membership to give a more balanced reference to the Ministry.  Hopefully, in the fall, this will happen and other provincial family organizations will take their place at the Table. As both a friend and ally who supports and works towards mutual values and goals, we sincerely extend this invitation to attend our conference and this most important and timely workshop. 

Going on in Ottawa at the same time is the “Encampment” project which may be of interest to some participants: On October 2 to 4, 2008, 70 tents will be assembled in Major’s Hill Park for 2 days and evenings. Sokoloski & McCowan are working with the (CACL), through a 50th anniversary cultural initiative curated by Clara Hargittay, and in partnership with the (NCC). The artists will shape an unprecedented national version of The Encampment. A group of Creative Collaborators, representative of Canada’s regional diversity, will be invited to research the history and stories of intellectual disability. They will then take part in a collaborative process to create individual tent installations inspired by these stories. For more information go to:
www.theencampment.net and click on concept on the left side bar.


October 7, 2008: 9am-4pm, at Wellington County Museum
Aging and Developmental Disabilities
Click for flyer



October 22, 23, 24, 2008, in Toronto
Autism 2008 – Geneva Centre for Autism International Symposium
The Symposium will provide a cross-section of perspectives on the most recent research and information on evidenced based best  practice.  All topics of importance to autism intervention will be addressed including bio-medical and neurobiological research, ABA, intervention, social skills, behaviour, communication, first-hand accounts, Asperger’s Disorder, and more.  Featuring speakers from Canada, U.S., Great Britain, and Australia.  For registration information, visit www.autism.net or contact Eva Finna at efinna@congresscan.com or 416-504-4500 ext. 208.




Friday, October 24-Saturday, October 25, 2008
Organization for Autism Research hosts its
Sixth Annual Applied Autism Research and Intervention Conference
at the Westin Arlington Gateway in Arlington, VA.

Read all about Day One.
Click for information and early-bird registration


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NEW BOOKS AND OTHER RESOURCES

Girls Growing Up on the Autism Spectrum:
What Parents and Professionals Should Know About the Pre-Teen and Teenage Years by Shana Nichols with Gina Marie Moravcik and Samara Pulver Tetenbaum.
Growing up isn't easy, and the trials and tribulations of being a teenager can be particularly confusing for girls with Autism Spectrum Disorders (ASDs). This book covers all the concerns commonly faced by girls with ASDs and their parents, from periods and puberty to worries over friendships and "fitting in".
Cover design by Carly Hatton of Guelph.
Paperback, ISBN: 978-1-84310-855-9, 234mm x 156mm / 9.25in x 6in, 256pp, November 2008, £13.99, $19.95


Consider a Henson Trust: What you can do to enhance the quality of life for a family member with a disability
Written by Harry Beatty, Mary Louise Dickson and John Stapleton and sponsored by the Reena Foundation and the Law Foundation of Ontario.

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MORE ABOUT OAARSN


See our
archive of past OAARSN news bulletins.
Read about why OAARSN was started and the tasks still ahead


You may be interested in our Creative Supports Bulletins which carry news about disabilities and special abilities and creative strategies more generally. See for example:  http://www.ont-autism.uoguelph.ca/CS-20060720.html

Send news, announcements and comments to gbloomfi@uoguelph.ca We welcome news items, announcements of autism events, new information, discussion questions and comments, and accounts of experience.

Please send submissions for this news bulletin or for the OAARSN Calendar and Bulletin Board in plain text format by email to
ebloomfi@uoguelph.ca with "announcement" at the beginning of the subject line.

Please provide details of announcements as BRIEFLY as possible: 
 Name of Event
 Main Speakers and Topics of Event 
 Date of Event 
 City and Location of Event
 Contact information to learn more about event
 URL Link for more information/registration 

 Please Do Not Send Files Or Brochure Attachments if you have an online version to which you can provide a link.

Visit OAARSN's website and keep in touch through the OAARSN Listserv--send a message requesting to join to gbloomfi@uoguelph.ca