ONTARIO ADULT AUTISM 
RESEARCH AND SUPPORT NETWORK 
NEWS BULLETIN
OAARSN offers a rich and expanding collection of up-to-date information and communication tools that can put you in touch with others. We can all benefit from the opportunities for mutual support, encouragement and information sharing. We hope that OAARSN's efforts to promote positive approaches and best practices in supporting adults with autism can help all who live and work on the front lines. Click on OAARSN's main page

See our archive of past OAARSN news bulletins.

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 note that this service is for information and awareness. We cannot endorse or be held responsible for the validity of any information or the value of any therapy or service. 
 

 

NEWS BULLETIN

  13 September 2004

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New on the OAARSN Site

Guelph conference on CREATIVE SUPPORTS FOR VULNERABLE ADULTS
Friday, April 29, 2005 in Guelph (at Ignatius College). 

Guelph Services for the Autistic is taking the lead in convening a gathering of Ontario people who want and need to be creative in supporting good lives with and for adults who are vulnerable because of disability. Our experience with folks who live with Autism Spectrum Disorders makes us aware of very complex challenges. We think these are shared in varying combinations by adults with other exceptionalities. We particularly want to encourage self-advocates, families and friends to take part.

  • Our concern is practical--how to plan and implement the elements of a good life for each person and that we can learn from each other's effective strategies and success stories. Let's assume we all agree that person-directed planning and individualized funding must be available options. What would we do with IF? What creative options could we develop now, to model future IF?
  • Our approach is comprehensive and holistic: Some other workshops and conferences may focus on one topic or kind of strategy. We hope to put our minds and imaginations around various strategies, to show the connections among them, and to help persons and families think about and choose combinations that may work for them. We know that each adult with ASD needs a blend of several creative and effective strategies adapted for that person. We think this may be true for other vulnerable adults as well.
  • We plan a process of collaboration in discussion and sharing resources--during the conference and also beforehand and afterwards, using the OAARSN website and other media.
  • We intend to apply for a Trillium project grant that would help, among other purposes:
    • to enable needy persons and families to attend
    • to record highlights of keynote, workshops and poster presentations, editing them into electronic and video resources to share with people and groups who cannot attend

We welcome the following forms of collaboration with other groups:
1. Ideas of good strategies and models that should be included and represented and of needs that could be addressed by this conference. Questions and comments....

2. Display materials illustrating creative strategies and success stories developed by your group or known to you, for the poster presentations and shorter sessions in the afternoon.
These are some examples we know ourselves, but we want to include more:
-ways of "deep listening" to vulnerable persons who do not speak
-helping self-advocates to direct their own supports
-creating and maintaining circles of support to supplement and succeed living parents
-circles of support for vulnerable persons who have no family
-creative options to have a home of one's own
-independence technologies
-recruiting volunteers to be informal friends
-ways to screen, train and appreciate excellent volunteers
-bridging gaps between adults with special needs and their neighbourhoods and communities
-supporting adults who want to continue learning, formally and informally
-enabling people to develop micro-enterprises
-lifesharing communities in households or larger units
-planning good lives now, to be effective through future transitions when parents can no longer support vulnerable adults
-how brokerage works
-what aroha/microboards can do

3. Someone to be the liaison person for your organization or support group, who will pass on news and updates to your members.

4. Letters of support for our Trillium Foundation application--referring to the good features of the event and process in relation to each organization's focus and sense of need. We would like to receive such letters by September 30, please.

5. If we cannot raise enough funds from Trillium, we welcome ideas of other sources of funds.

We look forward to hearing from you and very much hope that you can take part in some way.

Elizabeth & Gerald Bloomfield

Click for planning updates

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General Autism News


New Genetic Hypothesis For The Cause Of Autism
An article, suggesting a mixed epigenetic and genetic and mixed de novo and inherited (MEGDI) model, with evidence to support it, was published September 8, 2004 in the online edition of the American Journal of Medical Genetics Part A. Another story

Studies: No link between autism, vaccines
A report of three UK studies which conclude there is no significant link between thimerosal-containing vaccines and abnormal neurological development.

Scientists Report Start of MMR Vaccinations Linked to Autism Increase
However
US scientists Gary Goldman and Edward Yazbak assert that a link between vaccinations and autism is supported by the results of their investigation of population groups in Denmark and the US at a time when the neurotoxin Thimerosal was not yet used as a vaccine preservative, avoiding that particular possible influence on the numbers.

MERCURY: THE WINGED MESSENGER
A new book with this title, by the father of a son with autism,
begins "to answer questions about what many will eventually call the worst medical tragedy in modern medical history."

Darius McCollum's passion for trains backed by psychiatrist
After 20 arrests for commandeering trains in the subways and other transit-related offenses, a psychiatrist backs McCollum's claims that he cannot control his bizarre trains-gressions. The report says McCollum has Asperger's syndrome and "no understanding of the consequences of his actions... no perception of his behaviors being wrong ... no insight into the cause of his behaviors and does not have a concept of guilt for his behavior."

Understanding through Laughter
Adam Terrill is known around Marshalltown for not letting his disability get in the way of his dreams. Thanks to his sisters, people in New York and California now know who he is, too. Last week in Manhattan, Marshalltown native Autumn Terrill performed her one-woman play based on Adam's adventures with her family. Acclaimed by critics, "Gork!" had a successful run at the New York Fringe Festival, and will be auditioned on Sept. 17 for HBO. Meanwhile, Devon Terrill, who produces film and television programs for a company in Los Angeles, is nearing completion of a documentary feature about her brother. Through their projects, the sisters are seeking to promote understanding of mental disabilities - and to celebrate those differences, rather than discourage them.

Insight into Autism: Police, firefighters learn how to recognize developmental disorder
The Millis Fire Department's education about autism began less than two weeks ago when autistic teenager Andrew Grant angrily left his home and headed for the woods. It didn't take long for firefighters to find out they were searching for a very unusual type of person.

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Ontario News

Ontario's Last Three Institutions for Developmentally Disabled to Close
Social Services Minister Sandra Pupatello has announced that institutions in Smiths Falls, Orillia and Blenheim will be closed by March, 2009. They house about 1,000 people and employ 2,200 staff, whose paycheques are important to the local economies. Over the next three years, the MCSS will spend $110-million on community services for the 1,000 residents, including $70-million to build new housing for them, some of it with 24-hour care. The province also is launching a wholesale review of the system serving people with developmental disabilities. "We will complete a long-standing journey from an institution-based service system for people with developmental disabilities to a community-based system that promotes inclusion, independence and choice," Ms. Pupatello said. Since 1975, 6,000 people have been moved out of 13 institutions to live in communities across the province. The Ontario government now spends more than $1-billion annually to provide financial and social supports to approximately 39,000 adults with developmental disabilities, with most of the money flowing through community organizations. Read Globe and Mail article: "Developmental disability homes to be closed"


Points of View on Curing Autism
During the spring and summer, an important court case has been heard in Ontario. A group of parents of young autistic childen have challenged the Ontario Government to extend funding for Early Intensive Behavioural Intervention (EIBI) to children beyond their 6th birthday. Supporters have used various arguments, that include claims that EIBI (and (ABA) are "medically necessary" to cure autism and to save funds that would otherwise have to be spent caring for untreated persons with autism in the long term. To make their points, advocates for publicly funded EIBI compare autism to "cancer", a "scourge", "plague" and a disaster for their parents and families. The publicity around this court challenge must have increased general awareness of autism.
Read an unofficial transcript of the court hearings on the ASO Halton website


But some adults and parents who live with autism spectrum disorders have different points of view and consider that, for example, The [Toronto] Star's series of articles and letters on the issue of public funding for autism treatment has neglected several vital aspects. Here are two examples:
Autism not a disorder that must be `cured'
Autism at the heart of my being

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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

Only new announcements are listed here. For previously announced events, opportunities and projects that are still current, please click on this link

September 18, 2004, 10:00am to 1:15pm, in Toronto
Kerry’s Place Autism Services Half Day Workshop

“Nurturing Support Circles – The Key to Lifelong Safety, Security and Quality of Life”
with panelists Judith Snow, Graham Treeby and David Edmonds. Columbus Centre, 901 Lawrence Avenue West, in Toronto (at Dufferin St). Lunch to follow. Click for more details and registration form


Tuesday, September 21, 2004, evening teleclass
Effective Counselling for Persons with High-Functioning Autism and Asperger's Syndrome
A teleclass by Nathan Ory. Click for details



Thursday, September 23, 2004, 6:30 – 9:00 pm, in Guelph
Asperger’s Syndrome and Support Strategies
Guest Speaker:  Mark Heinmiller will share insights of living with Asperger’s Syndrome.
Workshop open to any individual/family member/support provider who would like to gain some basic information specific to Asperger’s Syndrome. The session will contain a blend of basic information and educational support strategies and will primarily be of interest to those where this diagnosis is relatively new.  Facilitated by Jim Timmins and Nancy Cleaver, who are Autism Consultants with Kerry’s Place Autism Services.
Location:  Canadian Mental Health Association, Orchard Park Centre, 5420 Hwy. 6 North, Guelph.

To register, please call 519-763-5812


Saturday, October 23,
9 am - 4:30 pm, in St. Marys Friendship Centre
Home Sweet Home
One day workshop for people with disabilities, families and service providers to hear about unique and different ways people have created a home for themselvesJoin people with disabilities, families and professionals to hear information and stories about:
  • supportive roommates
  • supportive neighbours
  • Rent-to-Own your own home
  • working with investors to build an accessible home
  • owning a home and having a boarder
The first step is having a vision. While this is not a workshop about how to secure funding for individual support needs, it will open minds to what is possible in terms of how people can live.  Click for flyer, map and registration form


Monday, November 1, 7-9 pm, in Guelph
Vision and Strategic Plan for a Farm Community &
Regional Centre for Autism Spectrum Disorder Expertise
A workshop sponsored by Guleph Services for the Autistic and Waterloo-Wellington Autism Services.
Discussion to be facilitated by Bruce Kappel. All are welcome but please register in advance as space is limited.  Email GSA or leave
message at phone 519-821-7424.
Link to background information about this idea



Thursday, November 18, 2004, 6:30–9:00 pm, in Guelph
LONG TERM PLANNING: Legal & Estate Planning
A discussion of some areas to consider when looking at the future for your family member with Autism Spectrum Disorder. The focus will include individualized planning using the strengths of the individual, family, and community. We will together discuss ways in which you can plan for and build positive and enhancing dreams and goals with your family member. The various aspects which add to a person’s safety and security will be discussed.  Follow up support is available.
PRESENTERS INCLUDE:
Mario Re, Life Insurance & Investment Director, Blue Water Financial
Richard Prouse, Prouse, Dash, & Crouch Barristers and Solicitors
Robert Wilson, Senior Vice President, Legacy Private Trust
Gail Jones, Kerry’s Place Autism Services
Location:  Canadian Mental Health Association, Orchard Park Centre, 5420 Hwy. 6 North, Guelph.
To register, please call 519-763-5812. Note:  Please register early as space is limited.

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ISSUES AND ADVOCACY

DISABILITY TAX CREDITS
From: "Anne Mossey" <amossey@yssn.ca>  York Services Support Network
Did you know that there are only 110 days left to claim past Disability Tax Credits, before they expire forever? The Income Tax Act allows people with disabilities or their caregivers who have not claimed the Disability Tax Credit to reassess their income tax returns back to 1985.
On December 31st the new 2004 federal budget will cut off back filing beyond 10 years.  This means that people with disabilities or their caregivers will lose up to 9 years of past tax credits.
People with disabilities or their caregivers, who have not claimed the Disability Tax Credit, should claim it now. It could save them thousands of dollars in income taxes they have already paid. More than 3 Million Canadians have a mental or physical disability and depend on someone for support. A dependent or caregiver may be a senior caring for a disabled spouse or common-law partner, a child caring for a disabled parent, or grandchild, grandparent, brother, sister, uncle, aunt, niece or nephew. Any one of these dependents or their caregiver are eligible to file for this tax credit. However many of these people are unaware of its very existence.
If you or someone you care for has a mental or physical disability that is severe and prolonged you may claim $6,279 on your 2003 income tax return. Additionally, if they are under age 18, you may claim a supplement which provides for tax credits that are 50% greater. If you have never claimed this credit you can file back to 1985, BUT ONLY UP UNTIL DECEMBER 31ST OF THIS YEAR. 
Qualifying for the Disability Tax Credit is the yardstick that allows you or your caregiver to make further claims for a number of other tax credits, deductions, and programs, such as;  child disability benefits, education and tuition fees, attendant care, private nursing, private hospital, aids to daily living, dentures, hearing aids, prescription drugs, payments to adapt a vehicle, travel expenses for medical treatment, group home fees, prescribed therapy, talking books, tutoring, renovation costs and much more.
If you have not claimed the disability tax credit.....do it now before you lose those extra nine years. It's not too late, yet.

John Dowson is the Executive Director of LifeTRUST Planning an organization that specializes in future life planning for people with disabilities. He can be reached at 1 800 638-7256 or email 
dowson@rogers.com      www.life-trust.com

Dan King, MBA, is the income tax and tax credit specialist at LifeTRUST Planning. 416-595-1782 <danking@life-trust.com>

You can help other families by lobbying the government to extend the deadline. In 2003 the federal government initiated a committee to explore issues related to the Disability Tax Credit. If you read their web site
http://www.disabilitytax.ca  they make no mention that at the end of this year they will be taking thousands of dollars of tax credits away from people with disabilities, and yet this is confirmed in budget documents.  Please ask them to extend the credit adjustment deadline for families with
disabilities by at least one year.    Fax 613-943-5597   Email: 
info@disabilitytax.ca 
Mail:  c/o Charles Smyth Technical Advisory Committee on Tax Measures for Persons with Disabilities, 140 O'Connor Street,  Ottawa, ON  K1A 0G5 
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SPECIAL PROJECTS

Health PractitionerS IN WATERLOO-WELLINGTON

On behalf of adults and their families in our Waterloo-Wellington region, ASPIRE seeks information about health practitioners who are willing to treat adults with autism and already familiar with ASD.
 
ASPIRE welcomes critiques on costs, usefulness of results, and quality of service.

1. Please include location and contact information, and any details of tests, and treatment practices and modalities.


2. We are interested in local, provincial and international professionals that families in the Waterloo-Wellington region have used.


3. Ratings and/or comments by families and persons with ASD on familiarity with, commitment to gaining a familiarity with, willingness to treat, availability of support staff to help people with ASD, will be valuable.


4. If you are responding as a healthcare professional, please provide links to personal reports or email addresses for persons, families or caregivers willing to discuss their experiences.

 
Practitioners may include:
Alternative Health Providers
                        Naturopaths
                        Chiropractors
                        Nutritionists
                        Massage Therapists
                        Reiki, Reflexology, Therapeutic Touch
                        Cranio-Sacral Therapists
                        NATE
Medical Doctors
                        Allergists
                        Environmental MDS
Augmentative Health Professionals:
                        Speech Language Therapists
                        Occupational Therapists
                        Physiotherapists
                        Nurses
                        Dentists
Laboratories
                        for taking samples for OHIP-covered and Non-OHIP-covered tests. 


Please email your information to aspire_advocate@yahoo.ca
 

ASPIRE provides information to persons who live with ASD, their families and caregivers, in order to support their search for resources and their right to choose among them. Unless specifically indicated, we do not endorse any specific treatment, program, product or service.


ETHICS PROJECT

Wilfrid Laurier University

Attention:  Clients of Social Workers

 

We are conducting a study on ethical issues in social work with the help of the Ontario Association of Social Workers (OASW). 

Social Workers and clients are being interviewed in order to develop a better understanding of the ethical issues that are confronted by social workers and clients in their daily practices and service relationships, respectively.
 

* We are looking for current and/or former clients who believe they were treated unfairly or unethically by their social worker.

* Have you every pursued a complaint?

* Would you be willing to share your experiences in an interview?


 

Reseach Project Title:

A Multifaceted, Action Oriented Study of Ethical Issues in Social Work Practice

$50.00 for an interview of 1 - 2 hours

Contact:

Catherine Fife, Project Co-ordinator at cfife@wlu.ca or

(519) 884-0710 ext. 3301

Note: All information shared is confidential and coded accordingly.

 

If you prefer not to be involved in an interview but would like to share your experience,

please visit our website at:

http://www.wlu.ca/fsw/faculty/mfine/EthicsStudy/
if you cannot reach this site by clicking, please cut-and-paste the URL into your browser

 

This study is funded by a grant from the Social Sciences and Humanities Research Council of Canada.
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AUTISM BOOKS AND OTHER RESOURCES

Quirks & Quarks has begun a new season with a provocative documentary on 
Language and Thought
Which came first - words or concepts?
And does the language we speak influence the way we think?
Some scientists believe that vocabulary actually shapes and limits our ability to understand or conceive certain concepts and ideas. But many researchers disagree. We looked at both sides of this heated scientific debate.
Click for the Sept 11 program

Further note on the book announced a week ago by OAARSN
My Sad is All Gone
by Thelma Wheatley is being published by Lucky Press in October 2004. ISBN 0-9760576-0-3, $18 US

An online description of the book may be found at luckypress.com/wheatley/
Thelma also gives talks and presentations on controlling violence in autism as a parent    orchard@ica.net 416-763-4408.


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FROM THE FRONT LINES: 

CALLING FOR HELP AND SHARING EXPERIENCES

Calls for Help

Thanks to all who responded to the calls for help in our recent bulletins.

News about adults with autism is usually negative. OAARSN receives many appeals for advice on where to turn for help--with diagnosis and assessment, advocacy, planning for the future, alternatives to approaches that are not working. There are virtually no obvious sources of help for isolated adults with autism and their caregivers.
We know that some adults and their families and caregivers are heroically using what resources they have to achieve some successes with their challenges. Some can report remarkable progress. We invite you, as an adult or caregiver living with autism, to share your problems and your success stories, if you think others might help or benefit.If you wish, we will not publish your name or email address. You may send a message to ebloomfi@uoguelph.ca for OAARSN. Or you might use the OAARSN Discussion Board, reached by pressing the Communication bar on our main page



 
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