ONTARIO ADULT AUTISM 
RESEARCH AND SUPPORT NETWORK 
NEWS BULLETIN

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OAARSN NEWS BULLETIN
 
12 June 2005


ONTARIO NEWS
Ombudsman's Report: Between a Rock and a Hard Place:
Parents forced to place their children with severe disabilities in the custody of Children's Aid Societies to obtain necessary care.  Final Report
Ontario Ombudsman André Marin released a comprehensive 44-page review of an 18-day intensive investigation into the problem by a special ombudsman response team. Roughly 90 families were consulted. Marin found that between 100 and 150 families are on the verge of giving up their severely disabled children to get the care they need. An additional 150 to 200 families are on waiting lists for residential services and at risk of being forced to give up their children. A significant proportion of the children and teens concerned have autism spectrum disorders.

Some advocates have responded to the publicity around this report by pointing out that a bureaucratic change to make it possible or easier for families to place their challenging children or teens in group homes and treatment centres may not be best in the long term for either the young persons or their families. More systemic improvements, in support for families to raise their children at home, better school policies, and building more caring communities are really needed.  Read, for example:


Lost in Transition
Toronto Star, Jun. 10, 2005
Once they hit the age of 21, the developmentally disabled face limbo. In the first of a three-part series, reporter Trish Crawford and photographer Tanis Toohey look at what happens when the supports these people have enjoyed all their lives disappear. 


No Public Inquiry by Ontario Coroner's Office into Ten Deaths at Oaklands Regional Centre
The mother of an autistic man who died after wandering away from a home for mentally disabled adults expressed bitter disappointment Friday that the facility where he lived won't come under the scrutiny of a coroner's inquest. "You fight and you fight and you fight; I've been fighting for 46 years and I'm tired," Gloria Mogridige said. "Our society is not doing right by these people, and it has to change."

A report released Friday by the Coroner's Office classified Mogridge's drowning as one of three "tragic accidents," including the death of a severe spastic quadriplegic who became trapped between his mattress and the bed rails, and an epileptic who drowned in the bathtub.   Three others died from gastrointestinal perforations. Two of them had been diagnosed with pica, a form of eating disorder common among those with developmental disabilities that leads to the chronic ingestion of non-edible items. The remaining four died from natural diseases.

Changes already made at the centre in response to the those incidents, along with the 11 recommendations made Friday, made an inquiry unnecessary, according to Dr Bonita Porter, Ontario's deputy chief coroner of inquests.


GENERAL AUTISM NEWS

Savant Gives Window to World of Autism
Daniel Tammet can visualize complex math, learn Icelandic in seven days, but had difficulty learning to walk and express himself. Tammet is an autistic savant. His extraordinary abilities stem from a combination of autism and a condition known as synesthesia.

The Age of Autism: Heavy metal
The Age of Autism: Goshen
The Age of Autism: A glimpse of the Amish
The Age of Autism: Amish ways
The Age of Autism: Mercury and the Amish
The Age of Autism: One in 15000 Amish
Further instalments in Dan Olmsted's efforts to determine whether an isolated population in the United States has the same prevalence of autism as the "English," as the Amish call the rest of us. The idea: Because Amish ways are so different -- from what they eat to how they spend their time to the fact that most do not vaccinate their children -- they might offer clues to autism.



Pleas for tolerance in UK as autistic youngsters face Asbos
Children with autism and other serious psychological conditions are being targetted by the UK government's controversial anti-social behaviour orders (Asbos), according to mental health charities and professionals. In one case in the South West, a 15-year-old boy with Asperger's syndrome, an autistic disorder, was given an
Asbo which stated he was not to stare over his neighbours' fence into their garden.  The young man concerned had no previous criminal convictions, but if he breached the order by 'continuing to stare' he faced a custodial sentence. His case has been taken up by the British Institute for Brain Injured Children (BIBIC), who have unearthed similar abuses across the country where Asbos have been used against autistic children.


UCLA study tackles aging issues of adults with developmental disabilities
Research published in the June edition of the Journal of Applied Research in Intellectual Disabilities suggests that a health screening by a nurse practitioner and follow-up home visits can significantly lower the number of health risks experienced by a person growing older with a developmental disability.
The research team studied 201 adults with disabilities who were living in non-institutional settings without nursing care. Their ages ranged from 19 to 79. The study aimed to test whether a comprehensive assessment followed by quarterly in-home visits over a year by a nurse practitioner could improve this population's health.

The team found a wide array of health problems among the research group, including:
-- Only 32 percent of 167 adults received age-appropriate health screenings, such as for cholesterol, blood pressure, hearing and vision.
-- 59 percent were overweight or obese.
-- 37 percent rated their oral health as fair or poor.
-- 35 percent had experienced recent falls.
-- 33 percent had moderate to severe pain.
-- 28 percent did not exercise regularly.
In contrast, the adults' health strengths were positively linked to how well they felt integrated into their community and satisfied with their lives. These findings proved unrelated to age, gender and medical care, and were inversely correlated with depression.
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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


Friday & Saturday, June 17 & 18th, 2005, in Toronto

Autism Society Ontario's
Annual Autism Spectrum Disorders Conference

and Annual General Meeting

Guest Speakers:   Dr. Lonnie Zwaigenbaum, Dr. Jim Bebko, Jonathan Weiss, Valorie Salimpoor, Richard Hales
For details, please go to the ASO website and click the link on the main page.

Aspergers Society of Ontario
Workshop Series in Toronto, evenings
Monday June 20: Financial Planning for the Future, Mary Stokes
Click for more information and registration form
Note the new Canadian book on Asperger Syndrome from Jessica Kingsley Publishers: "Children, Youth and Adults with Asperger Syndrome: Integrating Multiple Perspectives." For more information go to www.jkp.com


June 28, 29 and 30, in Guelph
Two Steps and a Glass of Water
Mental Health & Wellness Network is supporting and working with James Gordon and Spark of Brilliance
in this enriching and empowering production created by a unique community of people who are experiencing mental health issues, or are supporting others on their journey. You have an opportunity to support the movement of healing and recovery through the arts ... by purchasing a ticket to the performance and/or by sponsoring the production of this project. Four performances (3 evenings and 1 matinee). Please call River Run Centre Box Office at (519) 763-3000, 35 Woolwich Street, Guelph N1H 3V1
HELP SUPPORT THE PRODUCTION!

You can be an important part of this project by becoming:
Friend        -      under $250.  (your most humble contribution will be greatly appreciated)
Supporter   -      $250  (you can help with refreshments for the cast, props, etc.)
Donor         -     $500  (monies are needed for promotion and advertising)
Sponsor     -     $1000 (set design materials and art supplies)
Benefactor -     $2500 (costumes/ stage production/honoraria for the professional coaches)
Patron       -     $5000 (a documentary film that will be submitted to major film festivals and television programs)
Please make your donations payable to:  Spark of Brilliance - Two Steps Production,
and send to:
        c/o Orchard Park
        Attention:  Judith Rosenberg
        5420 Highway 6, North
        R.R. #5
        Guelph, On
        N1H 62J


July 10-13, 2005
Toronto Summer Institute: Inclusion, Community and Diversity
The Assembly Hall - Humber College - Lakeshore Campus
“People working actively on the complex issues of inclusion and diversity in communities, workplaces and schools will want to attend this event. This Institute is for Thinkers and Doers. - for people who know there are no easy answers and who are seeking new ways of thinking and acting. This will be a unique adventure in building a learning community together. The faculty see themselves as a jazz combo who have a definite theme and a flair for improvisation - harmonizing with the participants.”
Jack Pearpoint & Cathy Hollands
Inclusion Press International & The Marsha Forest Centre: Inclusion•Family•Community
Tel: 416-658-5363 Fax: 416-658-5067
E-mail: inclusionpress@inclusion.com
Web: www.inclusion.com



July 18-22, 2005, in Hamilton

Accessibly Yours
Enhancing Environments for Wellness and Occupation
Summer Institute
McMaster University - School of Rehabilitation Science
Click for more


July 20-21, 2005
, in Troy Michigan
Summer Institute!
Supporting resiliency and well-being throughout the lifespan
sponsored by:
Center for Self-Determination and Transition
College of Education, Wayne State University
Click for more details


October 20-23, 2005, in Toronto
Come to Your Senses....
From Theory & Research To Practice: Sensory Therapy & Disabilities
An International Conference for professionals, parents, caregivers & consumers
Presented by Muki Baum Association.

Program includes 37 presenters from 8 countries and a special presentation by Dr Oliver Sacks.


Friday October 21, 2005, 9:30am-4pm 
Regional Support Associates presentation on

"Adults with Autism Spectrum Disorders, Mental Health & Behavioural Issues"
Best Western Lamplighter Inn, London, Ontario
Presenters: J. Dale Munro, MSW, RSW, FAAMR and Liliian Burke, PhD., C.Psych.
Click for more information about RSA
including its Video Conferencing service to the Southwest Region

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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


Home supports one of many issues addressed at Trent Symposium
Creating a deeper understanding of issues surrounding disability is the focus of an inter-disciplinary symposium that began yesterday at Trent University in Peterborough. The symposium marks the halfway point of a $2.3 million dollar research project begun in January 2003 and led by University of Alberta researcher Dr. Janet Fast. The project, entitled "Hidden Costs and Invisible Contributions: Marginalization of ‘Dependent’ Adults," involves researchers from Canada, the United States, the Netherlands, Great Britain and Australia. The ultimate goal of the project is to develop a more humane and comprehensive analysis from which new solutions and policy changes can be envisioned and implemented.


Woman wins struggle with Revenue Canada
Shirley Joris of Windsor has just won her appeal against Revenue Canada, arguing successfully that self-employed support workers are not engaged in insurable and pensionable employment while supporting her daughter Shannon who has autism.

Transforming Ontario's Developmental Services
The decision of the Ontario Government to commence a process of transforming services it funds for people with developmental disabilities is an opportunity for all concerned about present inequities and, more positively, for all to plan and implement better lives in people's home communities. Click for reports and links from 2004.

The Ministry has hosted a series of six expert policy forums on the transformation of developmental services in Ontario in conjunction with various partners.

  • Specialized Resources
  • Residential Options
  • Citizenship and Advocacy
  • Quality Assurance
  • Funding Models
  • Supporting and Strengthening Families 
Here are links to reports on most of these forums. The first three reports are by Nancy Cherry, our ASPIRE Advocate.

Policy Forum on Citizenship and Advocacy

Policy Forum on Funding Approaches for Developmental Services


Policy Forum on Supporting and Strengthening Families

Policy Forum on Residential Options

Policy Forum on Quality Assurance

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BOOKS, WEBSITES AND OTHER RESOURCES

Enabled in Words: the Real Lives, Real Victories of People with Disabilities
Seventy-five authors from around the world have sent their words of inspiration to Enabled in Words. Contributing authors include people from all walks of life: from Ms. Wheelchair America 2005 to a United States Senator; from parents of children with disabilities to a comedian; and from broadcast journalists to individuals with disabilities. Key issues include:
  • Surviving cancer
  • Using a wheelchair
  • Accessing transportation
  • Having a child with autism
  • The ADA
  • Tissue donation
  • Living with mental illness
  • Adaptive sports
  • Strength from faith
  • Being deaf with humor
  • Actors and giving
  • International issues

Revel in the Light: The Story of Rebecca Beayni
A Quiet Life Will Shine..are the words that open this inspiring biographical portrait of Rebecca Beayni, a young woman whose incredible spirit bursts in and through the seams of a physical disability she was born into. Masterworks Productions  is pleased to present this story of Rebecca, a woman whose openness to life touches and stirs those in the world around her.
A testament to love and family, and the amazing mystery of hope, this film is the realization of a dream of Rebecca's, her family and that of The Ubuntu Initiative, whose mission statement follows:
The Ubuntu Initiative consists of individuals who have a developmental disability and their families and friends. We come together to imagine and to create, with these individuals, a different more hopeful future, rooted in gentleness, interdependence and deep friendship. Ubuntu is a South African Zulu word meaning: “My humanity is inextricably bound up in your humanity.”
Click for order form


Housing Again
a site dedicated to putting affordable housing back on the public agenda. Use this site for up–to–date information, subscribe to the Bulletin, check out our Events and Alerts and post ones you want to share!
See also: 
Shared Learnings on Homelessness
Raising the Roof



Project Lifesaver

Project Lifesaver International has established a Canadian Division to bring Project Lifesaver to Canada. Project Lifesaver is an established system used to track and recover those with Autism,Alzheimer's, or any type of dementia that may cause those afflicted to wander. Project Lifesaver uses state of the art radio directional receivers and transmitters to quickly locate and return home the wearers of our wristband transmitters. Since the programs inception in 1999, there have been over 1100 successful recoveries, with an average search and recovery time of less than 30 minutes.
Project Lifesaver (Canada) Inc. has received letters of intent from the Town of Caledon and the City of Windsor to become our first member agencies in Canada.
Randy Irving
Director/President
Project Lifesaver (Canada) Inc.
519-505-5888
519-894-0346

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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 perceptions, problems and success stories, if you think others might help or benefit.

If you wish, we will not print 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


Autism and Spirituality
An Ontario man of 37 who does not speak has become very expressive with the help of computerized communication devices. Among other things, he has revealed a deep sense of spirituality. One of his friends, who is an engineer and a Presbyterian layman, introduced him to a local Presbyterian congregation a few years ago. Together they worked on an article about his interest in the spiritual dimension which was published recently the Presbyterian Church in Canada's newspaper, with the title  "Loving people is loving God." Several of his poems are also printed.
Read the article at this link



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