Promising Autism Initiatives in the Guelph Region
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 and purpose 
Gerald and Elizabeth Bloomfield helped to found what is now Autism Society Ontario 30 years ago, as well as several autism and disability support organizations in this region; their adult son has autism. 
David DeVidi is a University professor of logic, friend of a man with autism, and board member of two related organizations.

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. 
   
1. Living with autism--for children, adults and families: an overview 
Autism/ASD/PDD is now understood as a neuro-immune developmental disorder involving the gastro-intestinal and brain-nervous systems in ways that are pervasive, complex and different in detail for each individual—both acute and chronic. 

  • Autism affects all races and social classes and people of all levels of intelligence. 
  • People with classic autism usually have a clear set of symptoms, but a broader group have some but not all of these symptoms. 
  • All have problems with social relationships, social interaction and the social use of language. Most have medical and health problems; many have hypersensitivities and hyperactivity. 
  • An estimated one per cent of the population is on the autism spectrum.
  • Research in the field of autism has greatly increased in the past few years. We now know more about the symptoms of what’s wrong, though not yet why. There is no known cure, no quick fix. We need much more expertise on how to help the physical and mental health, the coping skills and quality of life of people with autism.  
  • Living with autism is full of frustration and angst—for the person, the family and siblings, caregivers and teachers—reflected in marital and family breakdowns, and mental health problems. 
  • An added burden that families bear is the way they are too often treated by the social service system—which is patronizing and distrustful. Bureaucrats and agency staff come across as gatekeepers preventing access rather than openers of doors and windows. 
  • We hear mainly about autistic children; they certainly need help. Autistic adults are overshadowed—they may seem less appealing than kids, perhaps beyond hope, and their parents are usually exhausted and disillusioned. 
  • Because the symptoms of autism are so complex and pervasive, each person is unique and an individualized approach is essential.


2. The experience of one Guelph adult illustrates the difficulties but also shows that it’s possible to make a difference and for an adult to achieve a good life in the community.   

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:

  • a home of his own in which he is supported by people he chooses
  • continued research to understand his symptoms and challenges and also the most effective interventions and therapies
  • ways (for a man who does not speak) to comment on his life and make choices
  • respectful support by people he chooses to have in his life
  • opportunities to be present and contribute to the community
  • continued learning of all kinds
  • all adding up to a greatly increased quality of life, physical and mental health
What factors have made this possible?
  • Direct lifetime commitment of time, patience, and funds by his parents who know him best and care about him
  • Caring friends who take the trouble to listen to and understand him and to share part of their lives with him
  • The legal incorporation of a core group of his family and friends as a not-for-profit aroha, with powers to receive and manage any resources in the way that chooses and which help him best, to ensure that he is supported to communicate his thoughts and needs, and to keep his good life going beyond his parents. The aroha is an entity for personal empowerment and support, similar in values and functions to what is called in British Columbia a microboard, and in various American states, a self-directed support corporation. Such an entity is taken up also in Ireland, Scotland, Australia.
  • The initiative by a local charitable not-for-profit corporation, Guelph Services for the Autistic, established in 1980, to act as a housing trust owning and maintaining Adam’s home in trust for his lifetime occupancy
  • The shared values and trust of professionals and agencies who admire what Adam and we have achieved, and in particular, of TPAs that have been willing to flow funds that are individualized for Adam’s personal support plan. This means that available disability support funds are spent on what is most needed by the individual. With choice and flexibility, the available funds can be most effective.


3. Guelph Services for the Autistic, ASPIRE and OAARSN 
Our long experience in supporting Adam and relating to other families throughout Ontario is reflected in three Guelph-based initiatives in the past few years.

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. 

OAARSN (Ontario 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 circumstances.    
 

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. 
 

 

{return to the OAARSN website}