Presentation to the Hon. Brenda Elliott
Minister, Community, Family and Children’s Services
in her Guelph constituency office
Friday, 4 October 2002
Introduction to our experience
We appreciate this chance to tell
you about some good initiatives in your own constituency and to share some
views of ways the Ministry at Queen's Park could improve the lives of adults
with disabilities like autism.
Adam has lived in Guelph nearly 34 years, almost all his life. From his diagnosis with classic autism (moderately severe), almost no supports or services have been available for him in Guelph or even in the Waterloo-Wellington region. The one publicly funded service was the special class for autistic children started in Guelph in 1975, before special education was mandatory. In the local chapter of the provincial autism society, we also organized some services for autistic children and teenagers and some support groups for families. After nearly 6 years of primary school, there was nothing locally for Adam, so the next 16 years consisted of self-help and much long-distance travel to services. He had about 18 months in a distant group home and, in the absence of any other local supports, nearly 5 years of part-time stays in a provincial facility.
In the past 6 years, Adam and his parents and friends have taken the initiative in turning his life around. They are implementing a personal support plan that includes:
GSA is a charitable, non-profit housing trust with the goal of enabling adults with autism to live more fulfilling, happier and more productive lives in homes of their own. GSA supports and empowers adults, with their circles of family and friends, to do person-centred planning and make the best possible use of community resources.
GSA has just launched a 20-month project called ASPIRE: Autism Support Project: Information, Resources, Empowerment to help more families on this process. ASPIRE responds to the already large and growing number of families who are in the middle of building their own plans, using Adam’s personal support plan and experience as a model. Supported with limited non-Government funds, ASPIRE works directly in the Waterloo-Wellington region (in collaboration with WWAS). But its findings and achievements are of interest throughout the province.
Adult Autism Research and Support Network) is an Internet website,
started in early 2000, with an Ontario-based but now international List
of network members. Hosted by the University of Guelph at http://www.ont-autism.uoguelph.ca/
it is notable for its focus on adult autism issues, and includes many information
and communications features. It grew out of our experience with Adam, as
we researched his needs and possible sources of expertise. We see it as
a valuable free resource for other individuals and families who are isolated,
frustrated and sometimes despairing because of their lives with autism.
It connects folks all over Ontario who are interested in Adam’s experience
and are looking to it as a model that may be adapted for other individual
4. What we have learned about helpful strategies and how the Ministry and its Regional offices might be more supportive.
Resources are always in short supply, and one of the most important things any provincial government can do for vulnerable people is to improve their financial prospects
But a lesson of our experience is that effective use of existing resources is most likely if the focus person is involved in the planning of his/her supports, and if those dollars get spent according to those plans
The specifics of Adam's plan are just one approach, still evolving, for building a good life for a disabled adult. But if it's right that the effective use of dollars involves making sure that disabled people have a hand in defining the "good life" they want to try to live, we have to expect that the life-plans of disabled individuals will be extremely varied---why wouldn't they be as varied as the ways of life pursued by non-disabled members of society?
If the best results will come from allowing a wide variety of different approaches, there are a few things that can be done from Queen's Park which would help make this possible (and so make the process Adam has gone through less of a trial for later families that want to go through it):
a) Ministry’s regional offices could allow people to tailor their plans to their own needs rather than put up roadblocks
b) Cut out a level of unneeded bureaucracy now involved in having the funding go through large TPAs even in cases where the funding has been individualized
c) Look into giving families and individuals the option of arohas (entities for personal empowerment and support, also known as microboards or self-directed support corporations) that can be responsible, accountable, flexible and effective.
d) These suggestions all imply a respect
for and trust in families and the advantages of the family-centred model.