PLANNED LIFETIME NETWORKS BULLETIN
8 June 2003

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 submited and the urgency of announcing meetings or recommending advocacy.

Click for our archive of past PLN bulletins

a. If you wish to join or leave PLN LIST, please send a request including your first name and last name and your email address, to petermc@uoguelph.ca with "PLN" in the subject area.

b. When you have ideas and announcements to share with others, please send a message to ebloomfi@uoguelph.ca  with "PLN" in the subject area.

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ANNOUNCEMENTS OF EVENTS OR SPECIAL PROJECTS
See details of more events on OAARSN Bulletin Board and Calendar
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 
 Please Do Not Send Files Or Brochure Attachments 

new announcements

June 9, 2003, in Waterloo, Ontario
First in series of workshops about A Good Life
By Planned Lifetime Networks (Waterloo-Wellington-Oxford)
For more information and to register phone (519) 746-1188 or email plnwwo@sympatico.ca 
 

June 10, in Waterloo, Ontario starting 6:30 pm
Clarica Developing Financial Planning for Special Needs population:
Clarica is interested in developing financial products, protocols and systems, specially tailored to meet the concerns and needs of people with Autism and other special needs. Familis are invited to share their ideas and concerns at a meeting in Waterloo at Clarica Building,  94 Bridgeport Rd East, 2nd floor (Sobeys plaza). Meeting convened by Rod Murphy, phone 885-4000 ext 276, or on his cell - 498-0641, or email Rodney.Murphy@Clarica.com This is a message from Rod:
"The main focus of this meeting is to gather information. Clarica has unlimited resources that we can access. All we would like to do is to meet some families who can enlighten us on the concerns and hurdles that families face today.This will be a very informal meeting. We do not have any hidden agendas that will come to surface when you arrive. Brainstorming is our focus. You tell us your concerns as Parents/Advocates and we will write them down. With your help we can develop a framework together. At this point it is hard for us to talk about a specific need without input from the source-- Families. Our agenda is very simple, you can do the talking and we will do the writing. From my point of view, I would love to be able to help families with concerns about the present and the future. If we can help in any way, then this will be a success. I do think we can strive to become pioneers when it comes to providing services to families with special needs. So let's work together to achieve something special."
Please contact Rod if you plan to attend, or email Nancy Miles at peter-nancy-miles@sympatico.ca
Lack of interest will result in cancellation.
 

June 14, 2003, in Brampton
“Connections 2003”
Attend this fourth annual resource fair for young adults with disabilities to find out about equipment, education, employment,
housing and services. To find out more, contact Jon Greenaway at jgreenaway@erinoak.org
 

June 16, 2003, from 11:30 am in Toronto: 
Invitation to a Press Conference at Queen's Park
Issues are individualized funding, SSAH, citizenship, choices, options, adequate
funding, our involvement as key stakeholders
Organized by the Peel Family Network, this event and the issues are relevant for all people with special needs in Ontario. Please see more details below under ISSUES AND ADVOCACY. RSVP to Stan Woronko 
 

June 11-July 2, 2003
TASH is pleased to announce an exciting new series of Telephone Conferences on issues related to Quality Education in the General Education Classroom for Students with Significant Disabilities
This series is appropriate for teachers, administrators, parents, and others working to provide quality education for students with significant disabilities in general education classrooms. 
Topics include: effective support for students in general education, how to move the system towards inclusion, student-led IEP's, the effects of pull-out, academics, diplomas, employment, alternate assessment, and parent advocacy. 
TASH is an international association of people with disabilities, their family members, other advocates, and professionals fighting for a society in which inclusion of all people in all aspects of society is the norm.
Click for more information 
 

June 20-22, 2003, in Vancouver BC:
Vela Microboard Association of British Columbia announces the 
First Training Institute on Developing and Supporting Microboards
Please note that this workshop is for people outside BC who wish to set up a network of microboards, rather than a single microboard around an individual.
For more information or e-mail Linda Perry and look up Vela website
 

July 16 and August 14, 2003
Free CME-Accredited On-line Seminars/Teleconferences: 
"The Management and Control of Refractory Seizures Utilizing VNS Therapy™ in People with Mental Retardation and Developmental Disabilities, Particularly Those Who are in Independent Care Facilities (ICF’S).”
For more information
 

April 30-May 1, 2004, in Gananoque
Family Alliance Ontario and Integration Action for Inclusion 2004 Conference
Click for flyer

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ISSUES AND ADVOCACY

SPECIAL SERVICES AT HOME IS 21 YEARS OLD! LET'S KEEP IT EFFECTIVE! 
Send a fax in the week preceding Father's Day on June 15.

SSAH is an individualized form of funding that has been a popular and effective way of providing some flexible help to families who support their children and adults with special needs. At last count, the Ontario Ministry of Community, Family, and Children's  Services spent 6 per cent of its $1 billion budget to provide 18,500 families with an average $3,570/year.

  • But there are more than 1,000 families on the waiting list
  • Last year more than $2 million (that has been allocated to SSAH) was diverted to other purposes. 
  • Many families who support adults at home don't know they could get SSAH dollars
  • Families who live with autism spectrum disorders should apply for increased funding
The SSAH Coalition invites you to urge the Ministry to increase SSAH $$$$ and thus the ability of families to cope and improve their children's and adults' quality of life. Even if your family is doing all right, please speak up for the families, children and adults who are not getting enough help yet. 

Click to reach PDF files about SSAH and the campaign to send a huge number of Father's Day Faxes to the Minister.
Message from the Special Services at Home Coalition
SSAH: First Choice News
Father's Day Fax to the Minister advocating more SSAH funds
please download, print, complete and fax in the week preceding Father's Day on June 15.
 

June 16, 2003: by 11:30 am
Invitation to a press conference at Queen's Park, Toronto
Issues are individualized funding, SSAH, citizenship, choices, options, adequate
funding, our involvement as key stakeholders
Organized by the Peel Family Network, this event and the issues are relevant for all people with special needs in Ontario. Read on for the background: 
On October 7, 2002, a group of families went to Queen's Park and held a press conference to complain about the way the Ministry of Community, Family and Children's Services treats people with disabilities. They asked for choices and
options (individualized funding) and recognition as the most important stakeholders.

As a result of the publicity and pressure, they had the opportunity to meet with Minister Brenda Elliott who gave them an encouraging words of response. Many of you wrote wonderful positive letters to the Minister, encouraging her to listen to families and to open the door to individualized funding.

Now, eight months later, we find ourselves no further ahead. No concrete results. The specific families that were brought to Brenda Elliott's attention on October 7 are still stuck. The bureaucracy has failed them. The people who
went to the trouble of writing personal letters to Brenda received disappointing standard replies in a form letter.

This is why the families are returning to Queen's Park on Monday June 16. We will hold a press conference at 11:30 a.m.  and we hope that the Liberal Party will raise a question on our behalf in the Legislature Question Period later
that day. We want to reinforce our message and to make the government accountable.

We are encouraging many families to turn out for this event to demonstrate our determination and our solidarity. I hope that we can attract some families from regions far beyond the greater Toronto area. This is important to show that the issues are the same all over Ontario, and that families are united across the province. Also, if other family networks should want to officially join in sponsoring the event, that would be very powerful.

Bring your family members along, and plan for a picnic lunch on the grounds at Queen's Park. Tell your friends. The more people come, the stronger the message. This will be also an opportunity to celebrate our vision and our kinship.

If anyone is willing and available to participate in planning and organizing (to be done by email), please let me know. There is not much time left, but we know what to do! We want to make sure we cover the issues that are important to YOU!

Even though Peel Family Network booked the event, I want to emphasize that it's about people all over Ontario. We suffer the same system, and we share the same issues. All for one, and one for all. Help to make this event a great success.

I will post more information in the days ahead. Please RSVP -- let us know if you plan to come or not.
Stan Woronko for Peel Family Network sworonko@sympatico.ca
 

Disabled Ontarians Kept Waiting 
Editorial in Toronto Star, 27 May 2003

Model Support Worker's Role Description
This is a real role description for support workers with adults in one Ontario region. One of our members reports that it does work. What are the equivalent job descriptions in your region?

FUNDING ISSUES FOR SUPPORT OF ADULT WHO MOVES WITHIN ONTARIO
Several families and advocates have contacted us about the bureaucratic injustices they have suffered in trying to obtain some funding support for their adults with autism when they moved from one place to another within Ontario or when they moved into Ontario from another province. Click for one family's experience during the past 18 months.

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HELPFUL RESOURCES

The  Canadian Health Network offers a special section on people with disabilities to provide key information, answer FAQs about the health of people with disabilities, explore related issues such as violence prevention, relationships and alternative health practices, and browse a collection of resources on social issues. Get clicking and get healthy!

Learning Disabilities & the Law:  A Canadian Resource
Legal Action related to Learning Disabilities
After reaching ASC website, look for heading "Legal Action in Canada"

The Annual Report,  April 2002 to March 2003 of the Centre of Excellence for Children and Adolescents with Special Needs is available to download. 

9-1-l Protocol and Crisis Plans
Nancy Cherry of Waterloo has begun a project with the hope of accomplishing several things: 
1. developing a template for calling 9-1-1 should the primary caregiver be unable to make the call 
2. registering with the police so that when a 9-1-1 call is placed there is an electronic alert displayed that gives background information 
3. registering 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 
4. finding a tracking device to monitor children who regularly wander (and adults who want to develop more independence of movement) 

Nancy wants to reach individuals, families and other primary caregivers who have stories to tell about handling crises of the kinds suggested in the goals above. She writes: "Family Net has very kindly offered to help with this project. We need to interview families over the phone who have had experience with safety issues. We would like their personal stories as well as the kinds of changes they would like to see happen in the province. Success stories interest us as well. If any families have put special measures in place, we would like to hear how they made arrangements."

If you are willing to have a phone interview or otherwise share your experience, please contact Nancy at phone (519) 884-3309 or email Nancy Cherry nancy.cherry@sympatico.ca

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ONLINE ON THE OAARSN WEBSITE 

PLN Bulletin is now posted on the OAARSN website, so that past issues are indexed and accessible through Internet searches. While OAARSN is devoted to adult autism issues, some parts of the website are of more general interest to folks concerned about inclusion, self-determination and a good life for all who live with disabilities.

See the OAARSN Bulletin Board:
1. General News of Disabilities and Inclusion: 
Ontario News of Disabilities and Inclusion
News of Disabilities and Inclusion in the Rest of Canada
International News of Disabilities and Inclusion

2. Announcements of Events

3.  AROHA ENTITIES FOR PERSONAL EMPOWERMENT AND SUPPORT

4. Perspectives on Abilities and Inclusion (documents of personal experience)

5. our archive of past PLN bulletins
(including announcements of events already posted)