Ontario Adult Autism Research and Support Network - OAARSN

An Aroha is formed when a group of committed family members and friends join together with a person with disabilities to incorporate an organization according to the laws of the province, state or nation in which they live. This entity has the objects and legal powers to address the vulnerable person’s planning and support needs, to create solutions, and to manage resources in ways that are responsive and accountable.

The Maori word “Aroha” from Aotearoa/New Zealand is proposed as the generic term for incorporated entities for personal empowerment and support (similar to “microboards” in British Columbia or “self-directed support corporations” in various American states).

Aroha means the various qualities and values that are needed in a caring circle of friends. Its meanings include affection, love, charity, compassion, empathy, concern, trust, pity, understanding and true friendship—all in active ways, not just ideas or feelings.

The first Aroha in Ontario has been incorporated with and around a man in Guelph. This Aroha is willing to share its experience with other circles of families and friends who want to incorporate

Incorporated Aroha entities have great potential interest for:

• Persons who have disabilities that make them vulnerable or socially isolated and limit their abilities to carry through business decisions about their lives. An incorporated Aroha entity should be an option for anyone who has a developmental, physical, mental, cognitive, or communication disability.
• Everyone who cares about a relative or friend with a disability, as an Aroha can provide a platform for inviting community support to broaden and continue the good things being done by family and friends
• Communities who can see the benefits of families and friends having real and responsible roles in protecting vulnerable and otherwise socially isolated persons from abuse, and generally promoting safety in communities
• Government who are reassured that, with its legal powers and responsibilities, the incorporated Aroha entity functions enough like an agency to receive disability support dollars and provide fiscal management
• Prospective foundation supporters who appreciate Aroha entities for their success in leveraging family and community investments.

In essence, by ensuring that available resources and supports are used for the individual, in keeping with her/his wishes and needs—now, and into the future, after parents are no longer available or able to remember and take care of “the 10,000 details”

First, members and supporters of the Aroha entity ensure that the person with a disability has ways to understand options and make decisions about her/his life. We recommend a supported decision-making agreement.

Second, an incorporated Aroha entity can have legal powers to:
a) receive and administer individualized funding directly from Government
b) administer trust funds set up by families
c) be the employer of record for support workers
d) own and maintain property such as the home of the person with a disability
e) make contracts and agreements with independent service providers and consultants
f) make contracts with facilitators and agencies that may provide “second-level” supports
g) carry liability insurance

Aroha entities for personal empowerment and support may be new for Ontario. However, entities called Microboards, with similar powers and functions, have already proved themselves since the 1980s in western Canada.

• The Microboard was invented and named by David Wetherow in Winnipeg in the 1980s, as a creative response to the movement of Manitobans out of long-stay institutions.
• Entities called Microboards are most numerous in British Columbia where more than 1,000 have become vehicles for the practical involvement of friends and family members. The Vela Microboard Association provides exchange of information and support.
• Microboards are also being created in various US locations including Tennessee and Utah
• Microboards, as developed by Vela, are praised as most conducive to quality of life by Alison Pedlar, Larry Haworth, Peggy Hutchison et al. in A Textured Life: empowerment and adults with developmental disabilities (Wilfrid Laurier University Press et al. in 1999)
• For a more theoretical discussion of Microboards in relation to concepts of leisurability, see “Funding the Individual: An Idea that Spans the Ideological Spectrum” by Troy Glover, Journal of Leisurablity 26, 4 (Fall 1999).

All these can help persons with disabilities to have better lives. All stress the critical importance of relationships with friends. All are ways that a family can invite friends and community allies to understand the needs and values of its relative with a disability and to help plan for a more secure future.

Friends in circles, networks and incorporated entities (such as Aroha, microboards, self-directed support corporations) would agree that the elements of a good life and a secure future are, as so well presented in A Good Life by Al Etmanski of PLAN^TM:

• Sharing your vision
• Building relationships in a strong circle or network of friends
• Creating a home that offers sanctuary
• Making a contribution
• Ensuring choices
• Developing your will and estate plan
• Securing the plan

PLAN^TM creates personal support networks that are more formal and more enduring than circles of friends. PLAN and its affiliate organizations are committed to maintain lifelong networks around the relatives of lifetime members and to monitor their quality of life and services.

A legally incorporated entity, such as Aroha or microboard, is definitely more formal than a circle of friends or a personal support network on the PLAN model. It may be chosen by families with one or more of these characteristics:

• few or no near relatives to take trustee roles when the parents are no longer able to support their daughter/son
• a wish to help kind friends who may assume roles as directors by more exactly defining their responsibilities
• complex needs including difficulties of communication
• disabilities and circumstances that call for individualized supports and funding.

We envision an incorporated Aroha entity of personal empowerment and support as the formal core of a circle or network of more informal friends.

We may think that those who become directors of boards are typically lawyers, accountants, businessmen or ex-politicians. These people may bring useful skills and connections to any incorporated entity on which they serve.

But far more important for an Aroha entity for personal empowerment and support are those who really know and respect the focus person through spending good time together and “deep listening” to what are most important in their lives. Directors who share the values of the focus person and her/his family can use their legal powers to ensure that all available resources are responsibly used to support a good life.

The focus person and some family members may certainly be directors of an incorporated Aroha entity. It is good to plan for 4-5 other directors who are of different ages, abilities and interests and can bring various skills and connections to their roles. No individual who is currently paid to support the focus person can be a director.

Parents and siblings of persons with disabilities may feel short of friends. They have usually been too preoccupied with the special needs of their child to develop a wide range of good social relationships. They have had to be disciplined and self-reliant to survive. They may not feel they have been sympathetically supported by extended family members. They may hesitate to ask their few friends to take on what they imagine will be considered an unwelcome task.

We should know that there are people who care about our family. These friends may not have known how to help and may welcome an opportunity to be of service, especially when the roles are well defined. They may respect us for planning for the future. They may see their experience on such an entity as valuable for future responsibilities in their own families. They may even find joy and fulfilment in relating to other friends in the circle/network and entity.

Families who do not feel brave enough directly to ask friends and relatives to be part of the circle of friends or entity, may hire a facilitator to help them.

First, think through all the following questions. Don’t rush this phase, as it is essential to the longterm success of the aroha entity and a good life for the person with a disability.

• Do we really need an incorporated Aroha entity, or would our family, circle of friends, or personal support network be enough for our relative’s needs, now and in the future?
• What do we want the Aroha entity to do, now and in the longer-term future?
• Who of our relatives and friends would be willing and able to be directors? How well they know our relative with a disability? What gifts and abilities will they bring? Do they represent various ages, abilities and interests?
• Can we handle the work of incorporation or do we need to engage a lawyer?

It is quite possible to set up a non-for-profit corporation without share capital in Ontario with the objects of obtaining and managing supports for a named individual. Or you could choose to incorporate federally.  

The founding directors may feel able to handle most of tasks of incorporation, or you may consult a lawyer.  

1. Choose a corporate name. An appropriate name might be: “Friends of [person’s name]”, for example, “Friends of Adam Bede.” You will have to pay an approved searcher of records to ensure that the name you choose is not already in use and to produce what is called a NUANS.

2. Obtain and complete the forms for the Application for Incorporation of a Corporation without Share Capital (Ontario) or the equivalent forms if incorporating federally, including: 

• Names and addresses of all persons who are to be directors. It is advisable to have between 5 and 7 directors of an Aroha entity.
• Objects of incorporation, with the principal object stated first, then secondary objects if any. “It is advisable to keep the objects short but broad in nature

• Under special provisions, a non-profit non-charitable corporation must include the “No Gain for Members” clause which is pre-printed on the form. You may also state the provision that, on dissolution of the corporation and after payment so all debts and liabilities, any remaining property shall be distributed or disposed of to charities. 
• Names, addresses and signatures of the applicants for incorporation; these must include all the persons identified as directors. 

3. When starting up an entity for personal empowerment and support, you should also draft relevant bylaws to guide the directors on membership, election and qualifications of directors, and requirements and procedures for meetings and records. 

4. Directors should all be aware also of the ongoing responsibilities of a non-profit corporation–as to filing, changing any legal information, record-keeping, auditor, and meetings. Details required for Ontario non-profit corporations may differ from those required by Canada.

An Aroha entity that has practised administering the necessary supports and services during the parents’ lifetime is able to keep these going smoothly through a time of emotional loss.

An Aroha entity that is committed to “listening” to the person with a disability through, for example, a supported decision-making agreement, will continue to respond to the person’s changing needs and evolving abilities.

An Aroha entity that continues to recruit new friends and community allies and to renew itself will keep expanding the person’s network of relationships

An Aroha entity may be named as a trustee for special funds that may be set up under the parents’ wills

In the first Guelph meeting, on Thursday evening, 8th November, the Wetherows introduced the Microboard in relation to other concepts and practices of “serving” people with disabilities. They described how Co-operative and Microboard models were developed in Manitoba in the 1980s in response to the particular needs and opportunities of the movement of developmentally disabled people out of institutions.

Microboards are now interesting as a way of flowing individualized funds to persons with disabilities themselves, supported by their family and friends, as allowed in British Columbia. But it is important that a Microboard be more than just a legally incorporated body that can administer funds and resources for and individual with a disability. It should act more like family and friends than a conventional Board of Directors.

The Wetherows explained the Microboard as inspired by the ideals of the family and that it is essential to have the following qualities:

• Covenant or a promise to spend time with the person in an enduring commitment and to invite others to become friends
• Sanctuary, meaning safety and acceptance
• Deep knowledge and celebration of the person’s and family’s dreams and contributions
• Sharing and connecting in trust so everyone feels supported and valued
• Bridge-building to the larger community, “seeing places where the fabric of community can be drawn closer together”
• Advocacy and accountability in obtaining and managing resources that are under the control of the person, family and friends.

These qualities are all illustrated in the story of “Clarence” who pioneered Microboards in Manitoba. Lillian was his first friend: through her many contacts in family, church and community, she was able to ask others to be Microboard members for Clarence.

Clarence’s Microboard members were invited to:

• Do the things for Clarence that a good family would do
• Be good companions for Clarence
• Discover Clarence’s gifts and develop these into community connections and contributions
• Provide continuity, through enduring relationships with a large enough and strong enough circle of connections that members replace themselves by Clarence being able to choose new members he already trusts when some leave.

Microboard meetings were concerned with:

• Reflections: How is Clarence’s life? Are we remaining true to his dream?
• Accountability—to the Government for any public funds and especially to Clarence so his life could unfold as it should
• Discernment
• Evaluation
• Conflict resolution

A Microboard based on the spirit of a family and circle of friends has various advantages compared with other models of support for people with disabilities. It is smaller, more intimate, more direct, more responsive, more enduring, and supports relationships and community connections.

Experience over 15 years has shown the advantages of what the Wetherows call second-level supports. These are independent sources of ideas and technical expertise that a Microboard may choose to utilize and purchase. Individual facilitators or specialized agencies may help with tasks such as negotiating and advocating with government; recruiting, screening and training staff; and administering payroll. However, any second-level facilitators or agencies have no control of the funding to an individual and no authority over the person and family at the heart of an individual Microboard.

1. Start small
2. Begin around one person
3. Begin to groove the pathway for funds to flow
4. Look for any way that government already provides and can provide funding directly to a person or family
5. Include some dollars in an individual’s budget to be able to purchase second-level supports.

A workshop on Friday, 9th November 2001 at the University of Guelph Arboretum Centre was attended by activist parents and friends, self-advocates, professional allies, allies in government, potential project funders, and allied community members. Its objective: to develop a body of people who are well informed, decisive and committed to moving forward with a Microboard / direct funding initiative.

Our facilitators led us through a review of Microboard concept and practice to consider how ideas, structures and strategies might be aligned with the dreams of individuals and families and with local political, service and institutional realities in Ontario. The workshop included an extended “organizational PATH” planning process to generate a detailed graphic that can serve as an aid to memory, a focus for future reflection and evaluation, a way of testing emerging strategies and projects against the shared vision and principles, and a vivid document for communicating the plan to others.

This report summarizes the day’s discussions and plans in terms of Dreams, Goals, and Strategies.

We were encouraged to express our dreams of how Microboard might help the person with whom we are most concerned.

Dreams include:

• Affirming the right and possibility to make choices.
• Families encouraged and empowered to look for innovative ideas and sustainable solutions.
• Peace of mind and confidence in the knowledge that a son/daughter’s life is good and less vulnerable because of good relationships.
• Succession and continuity beyond the life of parents—by inviting others to join us on the raft.
• A means of inviting young people to keep joining the circle of support.
• Deep listening, so others besides parents know the “lore” about one’s son/daughter.
• A creative and flexible network, able to continue strong and hopeful.
• Real sense of community: we can all be part of something wonderful. The knowledge that we can do it, but that it takes all of us. Each of us has something to contribute.
• Positive energy, love, life-sharing, harmony, humility, and interdependence.
• Being able to continue living together with our son/daughter knowing that we can move into a context where we can receive the support we need as a family.
• Safeguards against management over-riding the spirit of a good life and against structures that dissipate energies.
• Transforming attitudes so Government wakes up and trusts families, and people in agencies and government put their shoulders to help push the rock uphill, rather than being part of the hill.

Families, friends and advocates stated the goals they intend and imagine they can achieve within two years.

• My friend gained a home of his own
• My son is celebrated for making a contribution to his community
• My daughter started her own business
• My son’s circle formed a Microboard at its core, in which he has supported decision-making powers to comment and make choices
• My friend’s life has been transformed from its extreme distress in 2001, because we organized a circle of support and Microboard to obtain the supports he needed
• Five family circles in one city organized local political action for direct, self-administered funding
• Deohacko group wrote a book about how to do it!
• My agency responded to individuals by contributing resources and second-level supports, especially around aging parents—and attracted families to move there by flowing portable individualized funding
• A registry for contract staff and a worker co-op were created
• A cadre of trained and experienced facilitators has developed, some paid and some volunteer, all independent of service agencies
• Stories of faithfulness and achievement are shared to inspire others with hope and determination
• Documented successes with Microboards made self-determination and individualized funding public issues
• Realization of the potential of Microboards added momentum to all the other efforts of the Individualized Funding Coalition, so that 50 per cent of all new MCSS dollars is being committed to direct funding of individuals with disabilities by 2003

• Strengthen links among all of us who think Microboards can help:
  • share success stories about and strategies that work for individuals
  • plan together in local groups
  • share ideas and challenges by email and on Listservs such as OAARSN and PLN
  • collect and share technical templates of technicalities of forming Microboards in Ontario (such a objects of incorporation, bylaws, etc)
  • tap into existing local groups, forums and training opportunities
• Note and support the efforts of the Individualized Funding Coalition in providing advocacy tools and connections
• Note that a microboard can be legally incorporated as a not-for-profit corporation (but not a charity)
• Help government to feel comfortable so that it’s not necessary to change legislation or regulations to meet the needs of each person. Look for ways government already funds or could provide funding to individuals and families (such as SSAH)
• A transfer payment agency might be created or adapted to flow direct government funds to various individuals’ microboards (such a TPA would be a specialized banker and have no authority over the individual microboards)
• Make sure facilitators are trained, stay in touch with each other, and respond to the individual needs and goals.
• Invite and enroll allies, including:
  • local MPPs
  • High school friends
  • Local parent groups
  • Church families
  • Service groups
  • Local business and community people with whom we have links
  • Self-advocates (such as People First or Bridges-Over-Barriers )
  • Allied professionals