PERSONAL SUPPORT NETWORKS
NEWS BULLETIN

PLN LIST is an email bulletin begun in 2001 for exchanging news and views about strategies of building and maintaining personal support networks for people with disabilities, and associated issues. PLN LIST came into being at the time Planned Lifetime Networks was incorporated in the Waterloo-Wellington region of southern Ontario. Members of the List are now distributed in communities across Canada, with some in other countries too.

PLN LIST is a free service maintained by Elizabeth & Gerald Bloomfield and hosted by the University of Guelph with technical support by Peter McCaskell. We welcome items of news and comment which should be sent to ebloomfi@uoguelph.ca. They will be grouped in batches for posting from time to time. Frequency depends on the volume of material submitted and the urgency of announcing meetings or recommending advocacy.

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NEWS BULLETIN

12 November 2004


Look up link to list of earlier bulletins for announcements and news that may be still current.

If you are concerned with Autism Spectrum Disorders, please note the wealth of news, announcements and other links in the Autism News Bulletins that are archived on the OAARSN website. Click for the list of OAARSN bulletins that are also concerned with general issues of disability and inclusion.


Special reminder!

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

Click for more details including questions
Click for PDF copy of discussion paper
See more below, under SPECIAL NEWS AND AN OPPORTUNITY !
The need for more effective supports, for adults with autism, is clearly illustrated by the sad news stories of the past week.


Ontario Disability News
Adults and children with autism have been sadly prominent in the news recently.
Can we all learn some lessons?


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.


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.


__________________________________________________________________________________________________________

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

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
See more below, under SPECIAL NEWS AND AN OPPORTUNITY !


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.


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

__________________________________________________________________________________________________________________

SPECIAL NEWS AND AN OPPORTUNITY !

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. It was said that "this very important process will profoundly affect developmental services for many years to come." The paper would be "the basis for broad public consultations to be completed by Feb/March 2005." The committee and paper would "define the all-important terms of reference for the broader provincial consultations."

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.

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 PLN 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 that should be embodied in any transformed system is proposed:
  • dignity and respect
  • building on community
  • fairness and responsiveness
  • accountability
  • practicality
  • sustainability

Questions are posed, to which all of us are 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 Dan 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 discussion paper, in your personal and family situation. You might 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. 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. If you'd like to air your thoughts on this PLN List, 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.

_____________________________________________________________________________________________


Guelph conference on
CREATIVE SUPPORTS FOR VULNERABLE ADULTS
Friday, April 29, 2005 in Guelph (at Ignatius Centre/Orchard Park)

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.

 


{return to the OAARSN Bulletin Board}