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

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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. Nor do we necessarily agree with opinions that may be expressed.

 

NEWS BULLETIN
12 November 2004

NEW CONTENT ON OAARSN WEBSITE 

ADULT AUTISM ISSUES IN WATERLOO-WELLINGTON
Joint newsletter of Guelph Services for the Autistic and Waterloo Wellington Autism Services, No. 28, November 2004. Click on title to read the PDF version.
Contents include:
Transforming Services in Ontario for People with a Developmental Disability
Expectations of a Farm Community: summary of workshop about Autism and Community by Bruce Kappel
Home Sweet Home: report of the St Marys workshop by Brian Henson
Mark Heinmiller’s Profile of Living with Asperger's
Poetry and Books on the Spectrum, includng a new poem by Brian and a note of his recognition in an international poetry collection
Annual Report of Guelph Services for the Autistic

AAIWW Bulletin Board

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CANADIAN AUTISM NEWS


Pianist savant wows jazz world
Autism isn't slowing down 12-year-old music prodigy Matt Savage. A good story in the Globe and Mail, linked to The Geneva Centre's international symposium this week in Toronto.

Other autism news in Ontario this week has been both sad and critical.


Early Intensive Intervention for Children with Autism


Canada Suit Seeks Aid for Autism Victims
Review in The New York Times of various cases currently before Canadian courts. Parents involved in the suit contend that they have a constitutional right to have their children's therapy entirely paid for by the government, just as a cancer patient is covered by the Canadian government health insurance system, which serves every citizen.

Autism program in chaos, auditor discovers
A special audit has uncovered an Ontario government program for autistic children in chaos, with lax oversight, millions of dollars in dubious spending and 1,200 children losing precious time on a waiting list while money goes unspent... The auditor found that the program has spent a total of $16.7-million less than its budget allowed over the five years since it began...Under the program, children receive an average of $79,000 a year to cover the steep cost of intensive one-on-one therapy, regarded as the most effective treatment for training autistic children to function more normally... At the three agencies it audited — the ministry was unable to provide accurate information for all nine — the cost of putting money straight into the hands of parents was as little as one-sixth the cost of funding the agencies to provide the service. It cost one agency $126 an hour to provide treatment, while parents living in the same part of the province managed to hire private therapists for an average of $20 an hour.

Provinces slowly starting to provide services for autistic children
A review by Margaret Philp, who also wrote the previous article for Globe and Mail, of funding and procedures in Manitoba, Alberta and British Columbia.



Weaknesses in Care of Adults with Autism

Links to stories in The Star:

Find answers for Mogridge's family
Autistic man wandered away earlier on the last day he was seen
Now, two families seek answers

The two-week search for Randy Mogridge who had lived for 24 years at Oaklands Regional Centre in Oakville, Ontario ended with the discovery of his body last Monday. He had apparently drowned soon after he left the centre.Thousands had joined in the search which was also a top news story. Now questions are being raised about the quality of care at Oaklands--by Randy's family and also by the family of Josef Naylor of Guelph who died there almost a year ago. The Naylors have filed a formal complaint about their son's care and demanded a coroner's inquest.

Josef’s mother Cyndy notes:
"This isn't just some freak story about some freaky institution where some strange man went missing or some other strange man died from swallowing an inedible object...This isn't a circus. This is all about humanity. We're all going to be disabled eventually — if we live long enough. And we're all going to be at the mercy of the system, if we live long enough. So, this is a story that crosses over, one disability to the next. It's a story that touches everybody, one way or another."

Disability advocate Marilyn Dolmage adds
:
"People who cannot use words nevertheless communicate in other ways. Josef was very ill for three agonizing weeks; why did the institution – paid to care for him – not take him to hospital? ... Randy was said to have wandered away, but he may have left the institution for a reason. Who knew him well enough – even to remember that he had new shoes, especially to keep him from leaving, and hopefully to prevent his discomfort and anxiety?...
"People who have developmental disabilities are best cared for by the people who love them and listen to them, respecting them as individuals with preferences and differences...
The Ontario Human Rights Code mandates accommodation plans based on the individual characteristics and requirements of each citizen with a disability. Resisting the grouping of vulnerable people in one place, away from their neighbours and loved ones - families have been creating wonderful alternatives for learning, companionship, housing and employment, that often cost less."


OAARSN calls on the Government, society at large, our communities, and all people of goodwill, to learn some lessons from these tragic deaths and all the anxiety and stress they have involved.

1. One lesson for the Government: Allow the option of Individualized Funding--and all that means--so that individual persons with severe disabilities like autism can have better lives that are more sensitive to their preferences and differences. Give families and circles of friends the means to create the "wonderful alternatives" Marilyn mentions.
Read: Transforming Services in Ontario for People with a Developmental Disability
and consider how to respond to its questions that the Ontario Government says will shape developmental services for many years to come. Attend a meeting in Kitchener to discuss these questions on November 13, 2004, 10am-12:30. See details under Events below and more under Issues and Advocacy..

2. Another lesson: Emergency Services personnel should work with families and caregivers to develop systems and devices that can allow adults and children to have some freedom of movement for the exercise that may help them so much, and still be safe. Technologically these systems are quite possible--if we use GPS devices to track stolen vehicles, should we not use them to protect and empower vulnerable people?

During most of 2003, Nancy Cherry of Waterloo worked on a project, Emergency Response and Crisis Intervention, of great importance to the autism community. Read a more detailed report  Its goals were to:
a)
develop a template for calling 9-1-1 should the primary caregiver be unable to make the call
b) register with the police so that when a 9-1-1 call is placed there is an electronic alert displayed that gives background information 
c) register with the local hospital or crisis clinic to avoid the intake procedure when dealing with an out-of-control individual who has special needs and may be non-verbal
d) develop or find a tracking device to monitor children who regularly wander (and adults who want to develop more independence of movement).

Randy's disappearance and tragic death resonate with many families who have endured terrible anxiety. One family of an adult (now 36) who loves to walk has had several very frightening experiences and narrow escapes throughout his life. They have contacted The Tetra Society to ask the help of this pro bono group of engineers in designing or adapting a tracking device that would enhance independence. Read their proposal 

3. Adults with autism and other severe disabilities above all need friends who "listen" to them, spend time with them, seek to understand what are most important in their lives, respect and care about them. Circles and networks of supportive friends can make such a difference! If only the total hours spent searching for Randy by thousands of volunteers could now be offered in friendship to a hundred adults with autism!

A conference on Creative Supports for Vulnerable Adults is being organized in Guelph next April 2005. See more below under Issues and Advocacy.



GENERAL AUTISM NEWS

McGill research team looking for cause of rise in autism cases
A specialist team from McGill University is in the throes of a Quebec government-funded study to try to identify some of the possible causes.
Numerous theories have been advanced to explain the rise in pervasive developmental disorders (PDD), including mumps, measles, rubella (MMR) vaccine, toxic metals in the environment, food allergies, and thimerosol or mercury used in many countries to stabilize vaccines.   These theories are now being put to the test by autism expert Dr. Eric Fombonne, whose recent paper published in the Lancet—a case-control study of more than 5,000 children—found no association between MMR vaccination and increased risk of autism or other PDD.

NASA studies 'Rain Man' inspiration

NASA scientists are studying the man who was the basis for Dustin Hoffman's character in the 1988 film "Rain Man," hoping that technology used to study the effects of space travel on the brain will help explain his mental capabilities. Last week, researchers had autistic savant Kim Peek undergo a series of tests including computerized tomography and magnetic resonance imaging, the results of which will be melded to create a three-dimensional look at his brain structure. The researchers want to compare a series of MRI images taken in 1988 by Dr. Dan Christensen, Peek's neuropsychiatrist at the University of Utah, to see what has since changed within his brain.

Using technology to keep the vulnerable safe
The Millis Police Department hopes a new tracking device will help keep people in town with Alzheimer's, dementia and autism from wandering away from home... Massachusetts is the 32nd state to join Project Lifesaver.

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ANNOUNCEMENTS OF EVENTS OR SPECIAL PROJECTS

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

 
For more details or for other previously announced events, opportunities and projects that are still current,
please click on this calendar list



November 13, 2004, 10am-12:30 in Kitchener
Planned Lifetime Networks provides
Family forum on the MCSS discussion paper:
Transforming Services in Ontario
for People with a Developmental Disability
Forum Leaders: Jan Burke-Gaffney and Sandra Barbadoro (members of the Joint Developmental Services Sector Partnership Table that composed the discussion paper) and John Lord.
Click for more details including questions
Click for PDF copy of discussion paper

November 18, 2004, 7-9pm, in Toronto

How to Complain Effectively
presented by Ombudsman Ontario. 
This interactive session will include:
  • learning skills to complain more effectively,
  • how Ombudsman Ontario can help solve problems with provincial services & learning how to make changes so others are treated fairly
When: Thursday November 18th 2004, 7:00 - 9:00 p.m.
Where: Bloorview MacMillan Children's Centre
  (MacMillan site @ 150 Kilgour Road)
Parking: regular parking rates apply at meters (there is heavy construction in area)
Cost: parents $5.00 and professionals $10.00
Childcare: NOT available
How to register: by phone (Pamela Kearns @ 416-425-6220, ext. 3310) or
e-mail (info@bloorviewmacmillan.ca)


November 17-20, at Reno Hilton

2004 Annual TASH Conference,
BLAZING THE TRAIL

The TASH Conference is the largest and most progressive international conference, known for pioneering strategies and blazing trails towards inclusive lives for people with disabilities and their families. You will not want to miss this invigorating conference, which brings together the best hearts and minds in the disability movement, and is jam-packed with over 300 topic specific breakout sessions, exhibits, roundtable discussions, poster sessions and much more.

Visit the conference website http://www.tash.org/2004reno/index.htm
for updates and complete information.

 

Wednesday, November 24, 2004, 7–9pm, in Orangeville
Occupational Therapy: A Practical Approach
Debbie Rodrigues, an Occupational Therapist, will discuss sensory/motor strategies, the “sensory diet” and modifying the environment to reduce unwanted behaviours.
KPAS Dufferin Centre, 29 Centennial Rd. Unit #4
Please RSVP by November 15, 2004 to Lynn Walbourne 519-941-7038 Ext. 11
*Limited space available – Register early*
Childcare is available at the A.S.O Dufferin Centre at a cost of $2.00 per child
Please call
Lynn by November 15 to reserve a spot.


November 24-26, 2004, in Ottawa
National Summit on Inclusive Education
Hosted by Canadian Association for Community Living
Crowne Plaza Hotel, Ottawa, ON
Conference brochure
Information schedule
To register Click Here


November 26, in London
Suicide Recognition and Response
Workshop by J. Arthur Sheil

November 30, in Ottawa
The Ties that Bind
The National Film Board of Canada invites you to the Ottawa
premiere of a film about 28-year-old Chris Jordan, who lives
with multiple disabilities, and his transition toward a more
independent life. Showing at 7:00 p.m. at the National Gallery
of Canada. RSVP by November 24 to 613-947-2306 or click on title.
 

Thursday, December 2, 2004, 9am-4:30pm, in Toronto
DURHAM ASSOCIATION FOR FAMILY RESPITE SERVICES &
THE SOUTHERN ONTARIO TRAINING GROUP CO-SPONSOR
An Exploration of Some Higher Order Issues of
Restraint as a Human Service Technique

Location:  Room SHE560, 5th Floor, Sally Horsfall Eaton Building,
Ryerson University
Recently, the press, some advocacy groups, and professional organizations have been raising questions concerning the use of restraints in human services.  This workshop provides a forum for concerned individuals, especially service workers, to explore some of these troubling moral questions raised by the use of restraints in human services, especially within the context of the vulnerability of people who receive services.  This is not a how-to-workshop, but rather an opportunity for reflection and learning. Click for information and to register

December 3-4, 2004, in Windsor
Autism Awareness Centre Presents
Jan Casali, Consultant to the Geneva Centre
Developing Communication Skills For Verbal and Non-Verbal Individuals with ASD
Susan Aud Sonders, M.Ed, Author of Giggle Time
Giggle Time: Establishing the Social Connection
Hilton Windsor, 277 Riverside Dr. West, Windsor, Ontario
For more information and registration form
Please contact Wendy Benson at toll free 1-866-724-2224 or wendy.casdc@shaw.ca
or Vicki Harris at toll free 1-866-488-9497. Fax: (780) 477-8350 or (780)447-5445.
Website information at
www.autismawarenesscentre.com.


December 3 & 4, 2004, in
Seattle, Washington

Innovative Interventions in Autism/NVLD & Asperger’s Syndrome
– Practical Therapy for Home & School

*Margaret Bauman, MD – Pediatric Neurology – Harvard University Medical Center
*Rosemary White, OTR/L – Occupational Therapy – Private Practice – Seattle, WA
*Martha Burns, PhD – Speech Pathology – Northwestern University
*Jerry Newport – Author – Adult with Asperger’s
Additional Information:  Linda S. Neilson Ph.D, Continuing Education Program of America, cepa@dpc.net


April 8-10, 2005, in Cornwall
Symposium on Raising an Adolescent/
Young Adult with an Autism Spectrum Disorder
Hosted by Autism Society Ontario's Upper Canada Chapter
Click for program
Sample of presentations:
-Secondary School Transitions for Students with Asperger’s Syndrome (Richard Hales)
-Planning for Transition to Employment, Community & Post Secondary Education (Lindsay Moir)
-Panel Discussion On Educational Issues - Please come prepared to ask YOUR questions
-ASD Students in High School - Visual Supports for Meaningful Learning  (Sheila Bell)
-Sexuality and People with Developmental Disabilities (David Hingsburger)
Registration must be received ON or BEFORE MARCH 25, 2005.
Early Bird Registration before January 21.
For brochure with all the details about the seminars, accomodations, costs and directions.
contact the Upper Canada Chapter for a brochure dkeillar@sympatico.ca

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RESOURCES AND RESEARCH

Mental Health and High School
There is a section for students, one for teachers, and one for parents.


Demystifying Autism From the Inside Out - Official William Stillman Website
Bill Stillman invites friends, individuals on the autism spectrum, and their families, caregivers, educators, professionals and associates to visit his new website. Bill is the author of Demystifying the Autistic Experience: A Humanistic Introduction for Parents, Caregivers and Educators, which has been highly praised by the autism and self-advocacy communities. His forthcoming book, The Everything Parent’s Guide to Children with Asperger’s Syndrome: Help, Hope and Guidance, will be published in 2005. His third book on the subject will be Autism and the God Connection: Divine Experiences of Exquisitely Sensitive Beings.
 
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ISSUES AND ADVOCACY
See also: Funding Issues--new OAARSN Discussion Boards and Topics. Press the Communications bar on OAARSN’s main page then choose Discussion Area

Transforming Services in Ontario
for People with a Developmental Disability

In May 2004, the Ontario Budget announced that the Government "will be transforming services for people who have a developmental disability in order to create an accessible, fair and sustainable system of community-based supports." In early August, we reported that the Ontario Ministry of Community and Social Services was setting up a steering committee to advise the Minister on how to proceed with the "transformation" of Developmental Services in Ontario.

With other advocates, we were concerned that the committee should be fully representative of persons and families who live with disabilities and that its deliberations and recommendations should be open and well reported.

A Preliminary Discussion Paper was released last week by the "Joint Developmental Services Sector Partnership Table." Read the Discussion Paper   Link to associated information on the MCSS website

Responses during November 2004 are invited, especially from groups of people and families concerned with disabilities. It is said that "this very important process will profoundly affect developmental services for many years to come." The paper will be "the basis for broad public consultations to be completed by Feb/March 2005." The committee and paper will "define the all-important terms of reference for the broader provincial consultations." So this is a unique opportunity....

We note that the Partnership Table includes 12 representatives of the Provincial Network on Developmental Services--Community Living Ontario, Ontario Agencies Supporting Individuals with Special Needs (OASIS), Community Living Ontario, "faith-culture" agencies (Christian Horizons, L'Arche Ontario and Reena), the Metro Agencies Representatives' Council (MARC), Great Lakes Society, and a francophone representative. Persons and families with disabilities are represented by three members of Family Alliance Ontario and two members of People First. There are also five senior officials of the Ministry of Community and Social Services and one of the Ministry of Children and Youth Services.

The Discussion Paper's purpose is to raise questions to help people share ideas and make suggestions, initially by November 30. "Feedback will help the Ministry to prepare a draft plan to transform services in Ontario, as the basis for a broad public consultation. It is noted that "the ideas in this document are presented for the purposes of discussion only and do not represent proposed directions or policy on the part of MCSS."

Members of OAARSN List and disability advocates generally will be pleased by the tone of the discussion paper, with its references to inclusion, removing barriers, building on community, self-determination and choices, individualized funding, and possible alternatives to traditional services.

A vision is proposed, based on In Unison (1998):

Persons with disabilities participate as full citizens in all aspects of Canada society. With commitment from all segments of society, persons who have a developmental disability will maximize their independence and enhance their well-being through access to require supports and the elimination of barriers that prevent their full participation.

A clear set of principles should be embodied in any transformed system:
  • dignity and respect
  • building on community
  • fairness and responsiveness
  • accountability
  • practicality
  • sustainability

Questions are posed, to which we are all invited to respond, initially during November:

  • What should be the roles and responsibilities of different parts of society in supporting individuals who have a developmental disability?
  • What strategies and resources would help individuals receive seamless supports throughout their lives, including points of transition?
  • What supports and services that are currently available work well should be built on for the future?
  • How should a reasonable level of government funding for an individual be determined?
  • Services are changing in Ontario for people who have a developmental disability. What would you like to see happen?
  • What do you think are the priorities the government should address?

What can we all do?

1. Read and think about the discussion paper, in your personal and family situation. Consider the points made in a recent presentation by John Lord who has been so active in the cause of self-determination and individualized funding in recent years. John's presentation "highlights some of the key factors that must go into transformation" and is based on "experience in several jurisdictions as well as on an emerging research literature." He notes that the MCSS consultation paper hints at key elements of transformation, such as Individualized Funding, the funding of Innovation, and the need for Independent Planning supports. But the Ministry needs many more ideas about how to implement such key factors. So we must spell them out in our reactions to their paper. Click to read Citizenship Based Policy Reform

2. Discuss the paper with others who have similar concerns, with a view to presenting a combined submission. That's the kind of response that is wanted this time.  Jan Burke-Gaffney, one of the three Family Alliance members on the Partnership Table, proposes that you send comments to her at hamiltonfamilynetwork@sympatico.ca by November 20, 2004.  If you would like to meet with other parents to discuss the paper and questions please let her know and she will try to connect you. Meetings for similar purposes may be convened in various cities.

3. OAARSN will co-ordinate responses from persons and families who live with Autism. Do the principles and questions of the Discussion Paper speak to your situation? How can the vision be implemented so that each person with Autism has a good life? If you'd like to air your thoughts, please send comments and questions to ebloomfi@uoguelph.ca

4. Think about taking part in the conference CREATIVE SUPPORT FOR VULNERABLE ADULTS which Guelph Services for the Autistic is organizing next April 29, 2005. We think this event is timely and relevant. See more below.

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Guelph conference on
CREATIVE SUPPORTS FOR VULNERABLE ADULTS
Friday, April 29, 2005 in Guelph

Guelph Services for the Autistic and OAARSN are 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. 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.
  • Our approach is comprehensive and holistic. 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 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. Highlights of keynote, workshops and poster presentations will be recorded and edited into electronic and video resources to share with people and groups who cannot attend.  Click for planning updates and conference program
We welcome the following forms of collaboration with other groups:
a) 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....

b) 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

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

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FROM THE FRONT LINES: 
CALLING FOR HELP AND SHARING EXPERIENCES

News about adults with autism is usually negative. We receive 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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