Update - October 2002
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
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
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:
ASPIRE’s goals and limitations
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
Search out explanations and interventions
to help cope with the symptoms of autism and achieve a better quality of
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
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.
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:
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.
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.
How to reach ASPIRE
(Autism Support Project: Information,
Leave a message for “ASPIRE” at (519) 821-7424