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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NEWS BULLETIN
4 December 2004

GENERAL AUTISM NEWS

What do we really know about the illness?
"No medical condition has received as much attention in the courts, or the headlines, as autism in recent weeks. It dominates headlines and baffles experts...." The Globe and Mail's medical reporter CAROLYN ABRAHAM answers readers' questions about the disorder (though only in relation to children with ASD).

Scientists trace aging-stress link
Some stressful events seem to turn a person's hair gray overnight.  Now a team of researchers has found that severe emotional distress -- such as that caused by divorce, the loss of a job, or caring for an ill child or parent -- may speed up the aging process within the body's cells. The findings, being reported today, are the first to link psychological stress so directly to biological age. The researchers found that blood cells from women who had spent many years caring for a disabled child were, genetically, about a decade older than those from peers who had much less caretaking experience. The study, which appears in Proceedings of the National Academy of Sciences, also suggests that the perception of being stressed can add years to a person's biological age.

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CANADIAN AUTISM NEWS

Support for Treatment of Children with Autism

Online Petition to Ottawa
In the wake of the Supreme Court ruling, several thousand parents and friends of autistic children have joined an online petition to the Canadian Parliament. They ask that the Canada Health Act be amended to "include IBI/ABA therapy for children with autism as a medically necessary treatment and require that all Provinces provide or fund this essential treatment for autism; and that the Government contribute to the creation of academic chairs at a university in each province to teach IBI/ABA treatment at the undergraduate and doctoral level so that Canadians professionals will no longer be forced to leave the country to receive academic training in this field and so that Canada will be able to develop the capacity to provide every Canadian with autism with the best IBI/ABA treatment available." Click on the title to read the petition. Read the background to the petition in Parents rally in Ottawa following Supreme Court decision

Advocacy for Children with Autism to the Ontario Government
The Supreme Court’s Auton decision puts the responsibility on the Ontario Legislature to make the right decisions for autistic children in this province. The Auditor-General for Ontario found that moneys voted for autism treatment were unspent or unaccounted for while at least a thousand children were untreated. Shelley Martel, MPP and tireless advocate for autistic children, keeps up a steady barrage of questions in the Legislature to the Ontario Minister of Children and Youth Services (look up the Hansard record). The Boufford family of London led a major petition to the Ontario Legislature earlier this year. Several legal cases are contesting the issues of eligibility of children for IBI funding, especially after they are "aged out" at 6.
Mike Glavic has told us of a current petition to all elected members of the Ontario Legislature, proposing a public inquiry to determine responsibility for the waste of resources, an official apology to all families of autistic children in Ontario, and the placing of autism treatments under the care of the Ministry of Health, to be made available to all autistic children of Ontario regardless of age.


Ontario Human Rights Commission's Guidelines On Accessible Education
These Guidelines contain the Commission’s interpretation of provisions of the Ontario Human Rights Code relating to discrimination against students because of disability. They are subject to decisions of the Superior Courts interpreting the Human Rights Code. Commission policies and guidelines set standards for how individuals, employers, service providers and policy makers should act to ensure compliance with the Code.

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Weaknesses in Care of Adults with Autism

Just about everyone in Canada who follows the news must be somewhat aware of autism spectrum disorders. But the court cases and advocacy efforts mentioned
above all relate to children with autism and not to adults.
In efforts to stress the needs of young children, misleading impressions may be left--that only children have autism, that the numbers of autistic adults are very small, and that 90 per cent of them are in "institutions."

The public becomes aware of adults with autism in a few tragic cases--such as the deaths of Randy Mogridge and Josef Naylor who were in the care of the Oaklands Regional Centre in Oakville. The Minister has ordered an inquiry into the circumstances in which Randy and Josef died. Sometimes we hear of adults with autism whose care seems extreme and inhumane--notably one man in the Niagara Peninsula whose family continues to petition the Ontario authorities to allow him to live in his own home which has been prepared for him.

We who care about adults with autism welcome any signs of support for initiatives that will generally improve the quality of life and inclusion in their communities of all adults with autism. Some of these:

1. Support for Adaptive Technology
that could allow people with autism spectrum disorders, or other disorders that make them vulnerable, to have some freedom of movement and still be safe. Devices have been invented that could prompt adults who have moved outside familiar neighbourhoods to go home if they can find their way or to seek help. Their families, friends or carers could also be alerted to their locations. We just need the infrastructure and public will to make such a system available in Ontario. Watch for more reports of this initiative.

 
2. Engagement, on behalf of adults with autism, in the process of
Transforming Developmental Services in Ontario
The Ministry of Community and Social Services in Ontario has begun a process of what they call “transformation of developmental services.” A partnership table of families, self-advocates, service providers, and government created a “consultation paper” including these questions that groups throughout Ontario have been responding to. All people concerned with autism spectrum disorders should be concerned about this process.
  • 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?
The partnership table and the government will now review the submissions and propose policy alternatives for that will be the basis for broad public consultations to be completed by Feb/March 2005. It is said that "this very important process will profoundly affect developmental services for many years to come."

Here are some links to resources:
a) 
Read the Consultation Paper

b) Gathering Momentum: Mobilizing to Transform Community Living in BC
is a report and assessment of British Columbia's transformation of its community living services from May 2001, in cicumstances similar to Ontario's in 2004, in being initiated by a new Liberal government in a period of budget and service cuts. The report identifies strengths and uncovers areas of tension, from which we in Ontario may learn.

c)
John Lord draws out some key lessons for our Ontario transformation process
from his close reading of the report of the BC experience. Click to read John's thoughts
He makes four main points:
i. We must find the levers than can transform the system
ii. We must be sure to build individualized funding with appropriate infrastructure support (especially independent planning/facilitation)
iii. As Ontario may now be interested in phasing in individualized funding, we are challenged to figure out how to do this in an equitable and meaningful way.
iv. We must focus on citizenship and community inclusion, an approach that means capacity building and participation rather than service or placement.
In summary, we must "build principles that all stakeholder groups can understand and work together to implement" and then "be strategic and collaborative in their implementation [which] can only happen if government and community work together the whole way."


d) Community Living Ontario: Keys to Transformation
CLO's response to the consultation paper identifies two elements of the new "core business" on which  Developmental Services should focus (click on title to read full CLO document): 
  • enabling the community to include people who have an intellectual disability; and,
  • enabling the person to participate in spite of their disability.
This new core business will shift Developmental Services increasingly away from a primary focus on the provision of programs and services that house and occupy people’s day, to a primary focus on community development, community capacity for social inclusion and providing individual support for community inclusion.

A key recommendation by CLO is that all people who have an intellectual disability should have an entitlement to planning support that should be aimed at:
  • assisting the individual to identify their unique aspirations, abilities and support needs;
  • working with the individual to identify existing family and community relationships and supports that might already exist to support them;
  • working to develop additional opportunities for relationships, participation and support within the community;
  • identifying what supports cannot be provided by family and the community and assisting the individuals to access them;
  • assisting the person to identify and access the government funding necessary to carry out their individual plan.
CLO also responded to the Ministry's indication that it intends to create centres of specialized care to address complex needs of some individuals seeking support and thus to invest in greater capacity for research to ensure that these centres and the rest of the sector benefit from the best knowledge available with respect to innovative ways of supporting people with a disability. The Ministry's suggestion may be interesting and attractive for persons with autism and their families because of the complexity of their challenges and symptoms and the lack of such expertise for adults with autism. CLO considers that such centres would be beneficial to people being supported and to families and those providing support but cautions that these supports should be delivered in community settings, be based on individualized plans, not label or congregate people, and be aimed at providing people the support they need to participate effectively in the community. They should not be conceived of or created as centre or building-based options. They should serve to embed people in their communities and families. These options must also be available widely throughout the province, designed to respond to people in their home community, not based in a few locations to which people are forced to travel. 


e) Keep visiting the site of The Individualized Funding Coalition for Ontario
that has a collection of background papers on this subject. For example:
I. the primer about Individualized Funding
that distinguishes income support and disability, and explains how IF and independent planning work and can help.  ii. 

ii. Take the individualized funding test (an article originally published on Community Living Leaders): Key Elements of Individualized Approaches within an Agency Structure


f) Plan to share in the Guelph conference being organized by OAARSN and Guelph Services for the Autistic next April 2005:
CREATIVE SUPPORTS FOR VULNERABLE ADULTS
Click for planning updates and conference program
See more below under Announcements

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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

.....advance announcements....events in 2005...

Saturday, January 29th, 2005, 2:00-5:00pm, in Ottawa

ASO Ottawa presents...
Finding Work for People with High Functioning Autism,
Asperger's and Non-Verbal Learning Disorders

Finding a job for someone with ASD is probably easier than finding a job for you! Discover how to find jobs for adults & youth with Autism Spectrum Disorders in the hidden job market. Find out how ASD can actually open employer's doors. Learn tested methods of job development and practice tricks of the trade, taught by Gail Hawkins, owner of Mission Possible, a job coaching firm specializing in ASDs and based in Toronto. The workshop is suitable for adolescents and adults with HFA, Asperger's and NVLD, their parents, educators, support workers and other professionals. Preregistration required. For more information, click here or email Anita at anita_acheson@hotmail.com or Heather at hfawcett@sympatico.ca, or call Anita at 829-4723. 

 
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


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

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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BOOKS, MEDIA, RESOURCES AND PROJECTS

Autism is a World

For 26 years, Sue Rubin has been on an extraordinary journey. Her unusual behavior led to a diagnosis of autism when she was four. She was believed to be retarded until age 13. But then a new communication technique gave Sue the ability to connect with the world. Now, she is a junior in college with a top IQ, a tireless disabled-rights activist, and an articulate guide into a complex disorder.

Written by Sue Rubin, narrated by Julianna Margulies, produced and directed by Oscar-winning filmmaker Gerardine Wurzburg, Autism Is A World is a rare and compelling journey into Sue's mind, her daily world, and her struggle with autism.

Sue says she is her own worst nightmare. When you meet Sue, she does not make eye contact. She does not offer to shake your hand. She may fixate on the buttons of your shirt, but cannot say your name. For Sue Rubin and thousands of others, autism is a complicated disorder that causes strange and uncontrollable behaviors. In Autism is a World, Sue takes the audience inside autism to explain what she feels and does. How she relates to others. Why she clutches spoons or finds comfort in falling water. How she navigates college and copes with the tasks of daily living.

In this insightful short film, Sue guides the audience through all that is special, and usual, about her life. From the racetrack, where she goes to unwind, to the classroom, where her intellect shines, from a presentation at an autism conference to the challenges of paying bills or cleaning house or shopping, Sue takes an unflinching look at the world of autism.

Autism is a World combines Sue's courageous writing with a sensitive, dramatic reading by Margulies. Brought to life through Wurzburg's experienced and powerful filmmaking, Autism is a World offers a view of autism as it has rarely been seen--from the inside out.

TRT 39:40
Producer & Director: Gerardine Wurzburg
Co-producer: Douglas Biklen
Associate Producer: Elissa Ewalt
Copyright 2004 State of the Art, Inc.

For more information, contact:
Elissa Ewalt, State of the Art, Inc.
Tel: 202-537-0818 ext 13 Fax: 202-537-0828
Email: eewalt@stateart.com
Website www.stateart.com
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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


A Service Provider’s Dilemma with Insurance

"I would really appreciate some dialogue concerning a situation I find myself in as a therapist and director of a small day program for verbal adults on the autism spectrum in Toronto. I have a clinic type setting in a separated apartment in my home. There are three modest sensory rooms, concentrating on sensory dysfunction, developing activity/sensory type diets, using community resources to expand the interests of participants. I am having difficulty obtaining insurance because of the population I work with. I could have a day care in my home, for neurotypical children-- even with no separation between my living space and working space--without its affecting my home insurance policy.  But as soon as I say 'special needs' children or 'special needs adults', my broker tells me that my home insurance policy (general liability) will be canceled. ...Has anyone else experienced issues with insurance in servicing from a residence...and if so how was it solved?"
Click on title to read the full account. OAARSN welcomes general responses. Or let us know if you are willing to speak directly to this service provider. This is a real challenge just as we hope for more flexible supports for our adults who experience the symptoms of ASD so individually.

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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.

Hearing (and Writing) the Words at Last
An inspiring update by Laura of the enhanced communication skills of Jim Holden of Kingston who is in his early 50s. Read an earlier story about Jim

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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