ASPIRE UPDATE, November 2002


For various reasons, families of a child with a complex and pervasive disability (such as Autism Spectrum Disorders) may delay making firm plans for the future. 

  • We may be too busy, exhausted and intimidated to have the energy or imagination to face anything more than the immediate present. 
  • We may put off such planning, because we hope or believe our child may recover or improve enough to become independent and thus not need any special plans. 
  • We may leave the future to take care of itself, assuming that we can depend on several siblings or other family members. 
  • We can’t believe that anyone else will care or do well enough for our loved one. 
  • We may assume that the Government, through traditional agencies, will take over the responsibility and make the decisions. 
  • We all tend to procrastinate, and to delay doing anything inconvenient or out of the ordinary.
To some extent, these concerns and assumptions are just. 
  • It is good to focus on the present: if we do the best we can now, the future will be better.
  • We cannot know exactly how a child will develop and mature through adolescence.
  • Detailed arrangements we might plan for a 10-year-old could be negated by changes in government legislation in the next ten years. 
  • In most cases, only families (or family-like friends) have the necessary insights and commitment. 
  • A family’s ability to plan a certain level of security for a child with a disability may be undermined by changes in the business cycle or in career paths, or by death or severe injury to a parent or sibling. 
  • We cannot absolutely shape the future to ensure our child will have a certain kind of life.
However, from the experience of many families who care for and about their disabled daughters and sons, we suggest these incremental ways to plan a good life in the community and a more secure future. 

Guelph Services for the Autistic (GSA) through ASPIRE: Autism Support Project: Information, Resources, Empowerment offers guidance to families who want to plan wisely for a good life now and the foundations of a more secure future. 

The following timetable may be used as a checklist. 
-If you are starting the planning process later—say your family member is now 20—you should review all the goals and activities suggested for younger people. 
-While ASPIRE is concerned with people who live with autism, this advice is also useful to individuals and families who are vulnerable because of other disabilities. 
-This schedule and advice are open to revision; suggestions from your experience are welcome.

By the time our daughter/son is 10 years old:

    We probably have some sense of how the disability is going to affect her/his ability to
    1. Express herself/himself in everyday ways and on important life-shaping topics and thus to make choices and decisions and explain factors that may be causing discomfort or anxiety

    2. Have good relationships with other people without being abused or exploited

    3. Live independently

    4. Hold a full-time job with some prospects of security

    5. Exercise initiative in using time and leisure opportunities

Priorities at this time:

  • Develop and stimulate effective communication by whatever unique ways work for each child.
  • Find and foster friendships with wise and humane people of all ages to be a support group (circle, cluster or network) for our person with a disability and the family. These friends will be given opportunities to spend time with our daughter/son, to “learn to listen” to them, to believe in their abilities, to scout for opportunities for work, leisure and new friends.
  • Keep informed of helpful interventions in physical health and learning strategies.
  • Consider how what’s happening in school is preparing person for adolescence and the future.
  • Make flexible contingency plans for how our child’s life would be secure if parents should die or become incapacitated prematurely—by making a will and appointing guardians and trustees, with provisions that should be reviewed annually

By the time our daughter/son is 15 years old: 

We have experienced puberty and the stresses of early high school years. We want to make sure that the remaining high school years are as useful as they can be.

Priorities: All the above plus:

  • Read and act upon the wise advice contained in Al Etmanski’s A good life for you and your relative with a disability (Vancouver: PLAN, 2000).
  • Undertake MAPS and PATH planning exercises, including expressing and sharing a vision of where your person could be 5, 10 or 15 years in the future, and then planning specific steps to get there from here.
  • Consider how what’s happening in high school is preparing person for adulthood.
  • Investigate and apply for disability and income supports for which person is eligible (such as the ODSP from the Ontario Ministry of Children’s, Family and Community Services, MCFCS, at age 18), or possible special diet supplements.
  • Consider incorporating an aroha entity for empowerment and support with legal powers to receive and manage resources.
  • Ensure that any planning ideas and options are understood by your daughter/son and that s/he has opportunities to comment and ask questions.
  • Evaluate or self-evaluate quality of life through instruments like the Adult Needs Survey.

By the time our daughter/son is 20 years old:

S/he should be receiving ODSP (or equivalent, if eligible) and we are facing the end of school and the regular structure that provides each week. 

Priorities: All the above plus:

Firm up all plans for the transition from school at age 21, including:

  • opportunities for understanding and self-expression (including Alternative and Augmentative Communication or AAC technology if necessary)
  • more independent living
  • contributing to the community through paid and voluntary work
  • continued learning
  • expanding opportunities for friendships
  • leisure time options
  • how all elements of a good life are to be co-ordinated

By the time our daughter/son is 25 years old:

We have got through the transition from school, but may be facing the end of some transitional programs. As parents, we need to think of how the good life can continue beyond us.

Priorities: All the above plus:

  • Review the transition from school to adulthood, in all the above aspects.
  • Strengthen the circle of friends and ask core members to be directors, with the focus person and family members, of an aroha entity of empowerment and support (if one has not already been incorporated)
  • Make firmer plans in case of parents’ death or inability to support son/daughter’s life
  • Make firmer plans for focus person to have home of her/his own (as in some variant of the GSA model)

ASPIRE proposes “planning ahead topical heading” (“path”) pages, with summaries of advice and resources, especially for people with autism, on the following topics:
1. Effective communication strategies
2. Finding friends and developing personal support networks
3. Getting the most out of the high school years
4. Wills, trusts and financial planning by families
5. MAPS and PATH planning exercises
6. Government-funded resources for people with disabilities such as autism
7. Managing the transition from school to adulthood
8. Incorporating an aroha entity for personal empowerment and support
9. Supported decision-making
10. Evaluating quality of life
11. Finding and keeping good support workers and caregivers
12. Residential options including: “How to have a home of your own”
13. Employment and small business options
14. Continued learning
15. Keeping healthy
16. Relationships
17. Spiritual life
18. Leisure time options including: Contributing to the Community
19. Roles of siblings
20. A whole life: co-ordinating everything
21. Managing the transition as parents die
22. Seniors with autism
Suggestions and contributions are welcome.

Elizabeth Bloomfield for ASPIRE,