Ontario Adult Autism Research and Support Network - OAARSN

I decide to begin the process of self-determination, encouraged by the people closest to me and by knowing that others have shown that a personalized plan can be realized. We know that alternatives to traditional group services and programs may give me the best support with what I want to do with my life—how I spend my time, with whom I live, and how I express my needs and priorities. But we also need to know that this process may also be a bit scary, because we will not be able to copy or fit into familiar programs and we may have to explore new ways. These ideas are expressed in this parable.

Beyond Programs: A Parable

In the beginning, there was placement, and lo we were happy when it happened, as placement was not mandated for adults who experience severe disabilities. And so, we said, this is good.

And placements multiplied and filled the earth.

And then we said, let us make programs, which focus on serving clients. And clients were defined and labeled, and grouped according to their labels. And programs created services for each label, and agencies developed unit costs for each service. And programs prospered and multiplied, and we said, this is very good.

And as programs multiplied, a cry arose: Let us evaluate these programs to see how good they really are. And program evaluation, regulations, quality assurance compliance plans and other program measures were created. And they multiplied and filled volumes.

And in those times, a person arose who was a client and who was also a prophet, and said:

“I don’t want to be a client. I want to be a person.

I don’t want a label. I want a name.

I don’t want services. I want support and help.

I don’t want residential placement. I want a home.

I don’t want a day program. I want to do meaningful productive things.

I don’t want to be “programmed” all my life. I want to learn to do the things I like, and go places which I like.

I want to have fun, to enjoy life and have friends.

I want the same opportunities as all of you: I want to be happy.”

And there was a long silence. And lo, everyone realized that they must look beyond their programs. But they were troubled and they asked:

“How can we do this? Would not each person need his own unique program and system of support and his own individual measure of quality?”

And the prophet replied: “Even as you say, so shall it be done—just as you do for yourselves.”

-Michael McCarthy; reproduced from Contact, Sept/Oct 1991.

I form my support cluster, circle or network of family members, friends (of various ages) and professionals, perhaps an Aroha-entity of personal empowerment and support. I know that friends who spend time with me, understand what is most important for me, and care about and speak up for me are the best guarantee of my quality of life, now and in the future. More about how these support groups can help me may be found on the OAARSN website.

My support group and I set up ways for me to understand and make choices and for others in my life to understand me—which may mean “alternative and augmentative communication” systems and support people who know how to validate what I say.Now we have a support group in Ontario for adults with Autism who do not speak with their voices. Find the Bridges-Over-Barriers webpage on this website.

My support group and I draw up my personalized plan using the tools called MAPS and PATH (Planning Alternative Tomorrows with Hope). We dream of where and what I want to be in say 5 years and brainstorm about ways to get there, taking stock of my abilities and challenges. Information about these tools and other resources may be found on the website of Inclusion.com

We assess ways and means to realize and sustain my plan. We look at all essential costs and any available resources (including informal or non-monetary ones). To start with, we ensure that I have applied for disability pension and other allowances for which I may be eligible. But we also look creatively at all other possible resources in my community. General ideas may be found elsewhere on this website. See especially the webpage of Guelph Services for Adults with Autism.

We weigh up the options and decide which combination is best for me. We have to balance hoping and believing that things will work out for the best with knowing that Murphy’s Law often operates and that we must be prepared for the hard days and gaps in support. It helps to have some level-headed folks in my support group who are good at scheduling and accounting. Above all, we ask this question about every plan: “Is it good for me?”

We find a broker who will work for my interests in negotiating supports and funding. S/he will advocate for resources so I can live safely and have hope and quality of life. I need a way to receive and administer funds that is right for me. Agencies involved with my plan must share its values and priorities. Support staff must be people I can trust and who believe in my plan. Resources to realize my plan must be flexible and portable. A helpful broker might be involved in steps 5 through 10. Search the OAARSN website for links containing the keywords/phrases “brokerage of personal supports” or “independent planning and facilitation.”

We find a place to live and decide what supports I will need. More information may be found on this website by searching for “Guelph Services for the Autistic” and its guide entitled Creating a Home and Good Life of My Own.

We set up a satisfying way of life, including continued learning, real work, exercise, recreation and friends, and decide what supports I will need. A sense of what quality of life means for persons with Autism is given in the Charter for Persons with Autism. 

CHARTER FOR PERSONS WITH AUTISM
( proposed at the 4th Autism-Europe Congress, Den Haag, May 1992)

People with Autism should share the same rights enjoyed by all the population where appropriate and in the best interests of the person with Autism. The following rights should be enhanced, protected and enforced by legislation, declared the Congress….

THE RIGHTS OF PEOPLE WITH AUTISM

1. to live independent and full lives to the limit of their potential;

2. to an accessible, unbiased and accurate clinical diagnosis and assessment;

3. to accessible and appropriate education;

4. to be involved (with their representatives) in all decisions affecting their future, so that their wishes are ascertained and respected;

5. to accessible and suitable housing;

6. to equipment, assistance and support services to live a fully productive life with dignity and independence;

7. to an income or wage sufficient to provide adequate food, clothing, accommodation and the other necessities of life;

8. to participate, as far as possible, in the development and management of services provided for their wellbeing;

9. to appropriate counselling and care for their physical, mental and spiritual health; this includes the provision of appropriate treatment and medication administered in the best interests of the individual with all protective measures taken;

10. to meaningful employment and vocational training without discrimination or stereotype and with regard to the ability and choice of the individual;

11. to accessible transport and freedom of movement;

12. to participate in and benefit from culture, entertainment and sport;

13. equal access to and use of all facilities, services and activities in the community;

14. to sexual or other relationships, including marriage, without exploitation or coercion;

15. (with their representatives) to legal representation and assistance and to the full protection of all legal rights;

16. to freedom from fear or threat of unwanted incarceration in psychiatric hospitals or any other restrictive institutions;

17. to freedom from abusive physical treatment or neglect;

18. to freedom from pharmacological abuse or misuse;

19. (with their representatives) access to all information contained in their personal, medical, psychological, psychiatric and educational records.

We set up ways of coordinating all parts of my plan and way of life, so they work together smoothly into the future, even when other things and people may change. We haven’t yet many models yet for this. But if we have chosen well at all the other steps, we have the best chance of success with this step too.