Stories

Ontario’s First Aroha

“The first Aroha in Ontario has been incorporated with and around a man in Guelph” read an item of OAARSN news in October 2002. What is Aroha? Why might it interest families and friends of other adults who are vulnerable because of disability? This is updated version of that story.

The Maori word “Aroha” from Aotearoa/New Zealand is being used as the generic term for an incorporated entity for personal empowerment that is similar in values and functions to a “microboard” in British Columbia or a “self-directed support corporation” in various American states.

Andrew and his friends wanted a distinctive word to evoke the qualities of the personal support relationships that a vulnerable person needs. Aroha means the various qualities and values in a caring circle of friends. Its meanings include affection, love, charity, compassion, empathy, concern, trust, pity, understanding and true friendship—all expressed in active ways, not just well-intentioned ideas or feelings. Andrew was born in New Zealand, so that is another reason for choosing Aroha.

Like microboards and self-directed support corporations, an incorporated Aroha also has legal identity and powers to receive and manage all resources in ways the focus person chooses and which help her/him best to have a good life, now and in the future. Andrew’s Aroha is a non-profit corporation in Ontario. But it does not have charitable status with the federal revenue agency, as it has been formed to help a single individual.

Andrew is a director of his Aroha, together with his parents and several friends who are of different ages, all younger than his parents. Directors of his Aroha are core members of his wider circle of friends who are also members of the Aroha. Andrew particularly needs friends who are empowered to help him, as he has no relatives in North America beyond his parents. His twin sister and best friend was killed in a traffic accident when they were 27.

Andrew and his parents and circle of friends were already committed to his good whole life in his own home into which he moved in 1997. His motto was “Nothing about me without me”. By good fortune he had found ways to express his thoughts and feelings, notably by a form of Augmentative and Alternative Communication that we call Supported Typing. From later 1998 his life began to be supported by a form of individualized funding which for him ”made all the difference: it is essential and the only way to give people choices and options. We must have the freedom to have our own life, to choose our own path and our own supports.”

After he had been living in his home for about three years and was regularly communicating his thoughts in words, he amazed us by typing these words, unprompted by anyone:
  I am very anxious about how my life will be supported in future. I want to talk about fear. I am terrified when night comes and I fear that I will be left alone. The thing I am scared about is seeing the day my parents die. I believe that we must move as quickly...... to get things moving. I really want to feel secure... to know who will live here. I’m concerned about my future security. I need to know my means of support. I need to know that there is a safety system. I want to live in my house forever. I want to mind my own life as much as possible. I need to lessen dependence on my parents. I need people to count on.

A person and family with such fears should certainly consider an Aroha which can also do more than provide for the longer term future.

Something like an Aroha came to mind as we had read about Microboards in BC in the book A Textured Life: Empowerment and Adults with Developmental Disabilities (1999) and discussed the value of such an entity with friends including John Lord. We decided to invite David Wetherow (with his wife Fay) to present at two events that we called Focus on Microboards in Guelph in November 2001. About 60 attended from all over Ontario. We felt encouraged enough to think through the whole process and benefits and actually to incorporate an Aroha which we called Friends of Andrew Bloomfield (FAB) in early 2002 when Andrew was 33.

As soon as his Aroha was incorporated and his friends had agreed to be directors, Andrew felt reassured. He said then and has restated the thoughts many times in the past ten years.
I feel good knowing about Aroha. I know my future is safer. Proud to feel I’m a pioneer. It means there is a plan for when G and E leave this earth. Aroha keeps my home going with my voice. My Aroha friends know how to listen to my voice. I feel safer knowing that my Aroha would be in charge. Not some strangers. I’m glad that I can express this.

Sometimes people considering an Aroha say “But who could we ask to be Aroha (or even circle) members? We have no friends!...” Families with a severely challenged son or daughter (especially it seems with Autism) may have few friends and feel very isolated. From age 12 Andrew had no services in his home city and began 16 years of commuting quite long distances. So community links were non-existent. We had no relations in North America beyond our nuclear family. If it was possible for Andrew and family to create an Aroha entity, it should be possible for most!

Friends who care about Andrew and his parents would need legal powers to administer resources with and for him after his parents can no longer support him. The other directors of Andrew’s Aroha bring various kinds of qualifications and life experience to their roles. They all know Andrew well, show respect for him, and keep in touch by sharing parts of their lives with him.

One director is a specialist in speech, language and communication who has known Andrew since 1991 and shared her family's farm with him for work, communication and friendship for 20 years. Another director (and president of the Aroha) is a professor a little older than Andrew who shares interests in the mind and physical fitness; he has become very active in various progressive ways of supporting individuals with developmental disabilities. A third director is younger than Andrew; she was his full-time tutor for two years and is now a teacher in Guelph and lives with her family in his neighbourhood. Andrew trusts all his Aroha directors to ensure that he has real opportunities to express himself and be listened to, as he does not speak with his voice.

What can Andrew’s Aroha do for him? 
•    Its general purpose is to empower Andrew to prepare now for a smooth transition from his parents’ large role in his life to a future in which he will eventually be without them.
•    Its directors are pledged to respect and support Andrew’s powers of informed and supported decision-making.
•    It has legal powers to receive and manage resources to help him cope with his disabilities.
•    At present, Andrew and his parents still look after the business side of his life and co-ordinate his disability supports. But his friends who are directors of his Aroha keep informed and in touch with Andrew himself, and procedures are becoming more formal, so that they can continue when Andrew’s parents cannot do this work.
•    Andrew’s Aroha also has the powers to advise on the most effective use of family trust funds that will be left by his parents.

Andrew’s Aroha could exercise additional powers and roles. It might own and maintain his home, even renting out part of it for income to offset some of his expenses. It might support him to operate a small business or micro-enterprise. It might receive disability support funds directly from the Government, as microboards do in British Columbia. Andrew and his friends have designed his Aroha for his needs and situation. The essential qualities and powers of an Aroha can be adapted for the specific needs and situations of other people who are vulnerable because of some disability. They are compatible with the values and goals of personal support networks and circles of friends, individualized funding, supported decision-making, and community building.

The same six directors have served on the board of Andrew’s Aroha since it was incorporated. Andrew’s mother as secretary-treasurer supports Andrew to keep everyone posted about the ups and downs of his life. At present it’s much more important to share the struggles and joys of life than just to attend to the chores of a corporation. We might combine a brief formal AGM with an annual general dinner party or hike or garden party. We use email. Aroha directors have helped Andrew to interview potential support workers and live-in lifesharers. Andrew rightly wants to be fully involved in discussions and decisions that affect him, and has clear and sensible ideas about what is needed. He loves the idea of being hospitable, but he can find real-time gatherings a bit stressful. It helps to have small group interactions as well as lots of social stories and practices in advance of any larger gathering.

Andrew has now composed his own account of how his life has been transformed by his Aroha, self-expression using Supported Typing, homeownership and other interrelated strategies. Bridges over barriers in my life with autism. By Andrew Bloomfield. Guelph: Friends of Andrew Bloomfield and Guelph Services for the Autistic for Bridges-Over-Barriers, 2011. 190 pages. ISBN 978-0-9866586-2-4 http://www.ont-autism.uoguelph.ca/AB-2011-blurb.pdf

Andrew continues to compose poetry and to paint about his feelings and thoughts, often using the words love, friendship, hope and joy. Here is a recent poem about how the love and care of friends sustain him:

Hoping for the best
AB, 7 Mar 2012
I have reason to hope for the future:
that life will be full of light
and love and friendship.
I have reason to hope because
it is already the truth of my life.
I am surrounded, circled and consoled
by my friends and loved ones.
I am already held in high regard
and given respect in ways
unknown to autistics in the past.
I am already listened to
for my opinion and looked to
for friendship.

I have hope for a future
that is the best because
I am on a good path
that I can return to at times
when I must lie down on the side.
I feel loved and I feel held
and I have reason to hope
my life will continue along
this way.

If you have a story you would like to share on this blog, please contact ebloomfi@uoguelph.ca