ASPIRE Update - October 2002

WHY ASPIRE?

Aspire means hope to achieve a better state of being. ASPIRE has a special meaning for folks in the Waterloo-Wellington region of Ontario who live with autism spectrum disorders, in offering hope of better lives in their own communities.

How can this be possible? 

We have not found some magic elixir or silver bullet that will cure autism. 
We know that autism is too complex and pervasive for a single remedy and that each adult needs a unique and well-coordinated strategy of interventions. 
Governments or foundations are not about to shower us with funds (though increases would be welcome). If they did, there’s no guarantee that lives would be better, as resources have to be used well to be effective for each person. 
Charitable agencies are not about to take complete responsibility for autistic adults from their families at 18 or 21. We know that agencies cannot make longterm guarantees, that their programs and services often do not match the needs and abilities of our adults with autism, and that families may be sidelined by agency staff. 
 

What are the hallmarks of ASPIRE?

  • Person-centred focus, respectful and sensitive to each individual’s priorities and situation—expressed in a unique personal plan.
  • Self-expression and self-determination by the person (by whatever means work) and deep listening by others.
  • A central role for families who know their daughter/son best and have a lifelong commitment to their well-being.
  • A network of real personal relationships with longterm friends who care, listen, understand, and share parts of their lives.
  • Having a home of one’s own that, if it is shared, is with people one chooses.
  • Ways to contribute to the community by being present and through meaningful work.
  • Opportunities to grow in mind and spirit and for initiative and decision-making.
  • Continued research to understand symptoms and challenges and also the most effective interventions and therapies.
  • Advocacy for secure and predictable disability funding that is both flexible and accountable.
  • Ways of co-ordinating all resources and supports so that each person has a good whole life that seems seamless.
  • Longterm security (beyond the lives of parents) that is based on a share of family resources as well as entitlement to disability supports from public funds. 


How do we know it’s possible?

One Guelph man, quite severely challenged by classic autism and some hard and tragic experiences, already has most of these hallmarks of a good life. He also has pioneered two legal and organizational mechanisms that make his good life more secure.

  • His own home, financed by his parents, is maintained in trust for his lifelong occupancy by Guelph Services for the Autistic. GSA also protects his rights to choose homesharers to support him to live as independently as possible in his home.
  • He has an aroha, an incorporated entity for personal empowerment and support, similar in values and functions to what is called a “microboard” in British Columbia or, in various American states, a “self-directed support corporation”. He is a director of his aroha, together with his parents and several friends who are younger than his parents. His aroha has legal powers to receive and manage all resources in ways he chooses and which support him best to have a good life, now and in the future.


How can ASPIRE help?

ASPIRE Advocate Jan Cooper and the Steering Group can help with information and resources so families who want a good life now and a more secure future can be empowered to:

  • With their daughter/son, make plans for a better life now and in the future, using the tools of person-centred planning such as MAPS, PATH, CIRCLES.
  • Develop a circle, cluster or network of friends who spend time with, listen to, and speak up for the person with autism.
  • Search out explanations and interventions to help cope with the symptoms of autism and achieve a better quality of life.
  • Find or create resources and supports for work, learning and recreation in home communities.
  • Consider options for having a home of one’s own, shared with people one chooses.
  • Consider forming an aroha, with legal powers to receive and manage funding and other resources now and in the longer term. 
  • Plan and advocate for community resources needed by other people who are vulnerable because of disability. 
  • Reach other families and circles of friends who have similar ideals and concerns. 
ASPIRE’s goals and limitations

What caring families and friends would not want ASPIRE’s free help? The project will appeal particularly to families of older teenagers and young adults facing the transition out of school placements, and to aging parents who continue to support their autistic adults at home and are very worried about the future. We are contacted also by adults who were not diagnosed as children but who suspect they may have High Functioning Autism (HFA) or Asperger Syndrome (AS).

But ASPIRE has only limited funding from non-Government sources. Its Advocate works an average of 10 hours a week for the next 18 months. She and the Steering Group cannot take over detailed planning for each individual. Her primary roles are to:

  • Meet with families and individuals who are interested in comprehensive planning for a better life and who have already responded to the detailed needs survey; 
  • Be knowledgeable and supportive about community resources and creative options that families and individuals may choose to pursue.
A successful ASPIRE experience will help a few individuals and families to make a big difference in their lives. Documentation of its successes will provide a foundation on which more such support may be provided—in our region and others.

How to reach ASPIRE 
(Autism Support Project: Information, Resources, Empowerment):

Leave a message for “ASPIRE” at (519) 821-7424 or gbloomfi@uoguelph.ca