Ontario Adult Autism Research and Support Network - OAARSN

Ontario Adult Autism Research and Support Network

OAARSN offers information and communication tools to connect adults with Autism, family members, caregivers, friends, support workers, teachers, administrators and policymakers. We can all benefit from the opportunities for mutual support and encouragement and the sharing of knowledge and experience. Our efforts to promote positive approaches and best practices in supporting adults with Autism can help all who live and work on the front lines.

Guelph Services for the Autistic

Person-Centred Homes and Support Networks

Incorporated as a not-for-profit charity in Ontario in August 1980. GSA has always been concerned with outreach information and discussion of Autism, especially adult issues. In 1997/8 GSA added a distinctive new role, as a model Housing Trust for individuals and their families and support circles. Pandemic constraints now provide a pause for reflection on GSA’s roles. A special project is rebuilding the Ontario Adult Autism Research and Support Network website (OAARSN, first launched in March 2000) with some fresh content. GSA also commissioned some fresh research into lived experience of severe Autism; this will be reported on the new website.

GSA continues to function both as Housing Trust and sponsor of outreach to increase understanding of our mission and values. We have continued our efforts to support and advocate for the people who are our main focus because of their severe Autism and complex care needs. We respond to inquiries about our individualized model of residential support. We are especially concerned for adults who are not well supported to communicate their needs, thoughts and choices. GSA’s longstanding support for the Bridges Communication Group (since 2005) has had to adapt to physical distancing protocols. One way is by using Zoom for virtual meetings of small groups of communicators

GSA Mission and Values
  1. Focus on the individual person: friends and family listening to the person
    • encouraging self-expression by whatever communication modes work reliably
    • self-directed plans for good whole lives in home communities
    • individualized funding with choices of how and with whom to live and how to use resources
    • adults with whom GSA has housing agreements are the corporation’s only “active members” (others are associate members)
  2. Emphasis on natural social relationships among family, friends and neighbours. GSA recognizes and works with:
    • circles of friends/personal support networks
    • Aroha Entities of personal empowerment and support (like Microboards)
    • creative strategies for community inclusion in collaboration with progressive community leaders and groups.
Contact GSA

Contact GSA about any of its roles, or to make a tax-creditable gift. Guelph Services for the Autistic members are invited to share concerns, ideas and hopes, and are eligible to vote at general meetings and to be nominated and elected to serve on the GSA Board of Directors. Donations of $25 or more qualify for tax-creditable receipts. President: Dr Gerald T. Bloomfield. Email: info-gsa@oaarsn.ca

GSA as Housing Trust Since 1997

GSA has advocated for solid foundations so adults can lead good lives in their own homes in our communities, with self-directed planning and individualized funding. This part of GSA’s role supports each person with family and friends to plan and create the unique home and good life that’s right for them. GSA can look after the financial administration and maintenance of homes for people who need such support but want to have a sense of pride and security by living in their own homes. As an enduring corporate entity, GSA can provide longterm security. GSA recognizes the rights of each focus person to make choices about their lives. Adults who make agreements with GSA are its “active” members, other committed members being “associates”.

GSA’s energies as a Housing Trust have been concentrated on making a success of its first house, sharing this model and organizing itself to extend its services to other vulnerable adults. GSA’s first focus person has lived in his own home since June 1997 and consistently states that it is a top priority for him. With his parents, he has prepared his home for occupancy by people he chooses as support workers and living companions. He also pioneered for Ontario the incorporation of an Aroha entity of personal empowerment (aka Microboard).

Core members of his circle of family friends or support network are legally incorporated to have the powers to carry out his choices. Such an entity is now required for any adult whom GSA directly supports in their own home.

GSA with the young man and his family took up all these ideas, formalizing them with help from GSA’s lawyer. Within a year of GSA’s first re-orientation, four of the six critical agreements to safeguard a good life had been drafted and made effective. The substance of the other two agreements was implied but not expressed in formal legal terms until several years later. Click here to reach chapters of GSA’s Creating a Home and Good Life of My Own

GSA Roles Since 1997

  • Trusteeship role in owning and maintaining a home for each adult supported, with various legal agreements to protect the person’s safety and human rights. The GSA model attracted interest from families and agencies. GSA published two print editions of its manual Creating a Home and Good Life of My Own (2008, 2012) and an updated edition online on the rebuilt OAARSN website.
  • Developing more living support options, such as “anchor” and companion lifesharers.
  • Recruiting volunteer friends, circle members, mentors and host families for adults with Autism.
  • Advocating for access to appropriate supports, funding, and for recognition of rights.
  • Sheltering the Bridges Communication Group of self-advocates.
  • Sharing Information through the OAARSN website (Ontario Adult Autism Research & Support Network) being rebuilt in 2021.
  • Taking part in workshops and conferences on progressive issues.
  • Organizing workshops and conferences and collaborating with organizations who work with and for vulnerable adults, notably Waterloo-Wellington Autism Services.
  • Providing information, advice and group presentations with support innovations, on Aroha entities aka Microboards for example.
  • Conserving and describing Autism-related records, notably in the Autism Fonds at the Wellington County Archives.

How did GSA become a Housing Trust?

The impetus to GSA’s original formation in 1980 was our realization that the young children diagnosed with Autism in the early 1970s were growing up without any prospects of education or support for their complex needs. GSA’s first directors and members were also active in the local Wellington Chapter of the Ontario Society for Autistic Children (now Autism Society Ontario).

In the 1980s, GSA produced various service plans and advocacy documents for adolescent and adults and organized meetings on particular kinds of support. With the Wellington Chapter, we published in 1985 what was probably the world’s first book-length Bibliography of Autism that had been compiled by Dr Andor Tari of the University of Guelph. In 1986 we also organized GASROD (Guelph Autism Services: Research, Outreach, Development), a federally funded yearlong project to promote better supports for people living with Autism. In 1990-91 we hosted the Adult Task Force of what was by then named the Ontario Society for Autistic Citizens and published the report Our Most Vulnerable Citizens comprising essays by Dr Susan Bryson on the “Needs of and Service Models for People with Autism” and results of a survey of 802 Ontario adults and older teenagers born in 1974 or earlier.

From the late 1980s, GSA worked with colleagues in the Waterloo Chapter of OSAC to develop services for adults in our larger region. In 1991 we together incorporated Waterloo-Wellington Autism Services by renaming and refocusing a Waterloo charity that had hoped to create a residential community. We had learned that the local office of the Ministry would consider funding only a joint Wellington-Waterloo proposal for residential supports. The Ministry did come through with annual grants to WWAS until 1995/6, paying for an office and 2-3 staff who provided information and facilitation and a pilot project of supported employment. WWAS has continued to support various worthwhile projects, some in collaboration with GSA.

GSA was impelled to take on a special new role in 1997 by several factors in that period. The Ontario Government’s de-institutionalization policy was starting to empty the provincial “facilities” of thousands of developmentally disabled people. While this was a good goal, the way it was implemented caused anxieties about housing and other supports for both people moving out of the institutions and for adults in the communities who had to compete for places in group homes. Families of people with complex, high needs were concerned that their care plans would not be individualized enough and began to advocate for more sensitive service planning based on each person’s unique needs and potentials. A young Guelph man living with severe Autism had created his own care plan but this was regarded as too individualized by agency and Ministry staff who then had a generic policy of “one-size fits all”.

Times of change may open up new ideas for discussion and possible influence on policy. This happened around the Guelph man and shaped the roles of GSA:

  • Representatives of several disability groups banded together as the Individualized Funding Coalition for Ontario to exchange ideas, both in gatherings such as one at Couchiching in October 1998 and also by email that was just starting to take off.
  • A Windsor agency keen to encourage its families to use brokerage of personal supports (later called independent facilitation) liked what GSA was trying to do and agreed to act as a transfer payment agency flowing individualized funds to the Guelph man.
  • Two organizations that served or advocated for adults with severe Autism shared a model strategy of an agency supporting an individual in an occupancy/housing agreement.
  • More generally, ideas of homesharing were current, offering the possibility that some community people might be interested in trading cheap or free accommodation for willingness to provide some support and companionship for vulnerable elderly or others with disabilities or fragile health living in their own homes.
  • Circles of friends or personal support networks were proving their value, often combined with use of planning tools such as PATH (Planning Alternative Tomorrows with Hope).
  • A few pioneering parents had bought homes for their severely disabled young adults to lead their own lives, usually making agreements with progressive agencies that would maintain quality of life into the future.

GSA’s Outreach Activities

To increase community understanding of its mission and values, GSA has continued and intensified the outreach activities it engaged in from its first incorporation as a not-for-profit registered charity in 1980. We want to help adults with Autism and complex needs to express their unique selves, understand and make choices about anything that affects their lives, and develop their gifts to share with others. Our outreach provides a context of values and ideas that help people and families to focus their energies on planning good whole lives. Valuable lessons we have learned: we must listen to each person we want to help; and we should plan and work with them as well as for them.

The Ontario Adult Autism Research and Support Network (OAARSN) was GSA’s first outreach function while reorganizing itself as a Housing Trust in the late 1990s. OAARSN has usefully publicized and reported on GSA’s various outreach activities in the past 24 years.

In 1999 we had the opportunity to create a website with the voluntary support of Peter McCaskell, an IT specialist at the University of Guelph. At first its purpose was to facilitate communication among GSA’s Board members. But the new website’s functions increased as we realized the need for better interconnections and information sharing among activists concerned with making a better world for and with people living with disabilities. We were especially concerned for adults at the severe end of the Autism spectrum who also have complex and high care needs.

So OAARSN went live in early March 2000, offering “information and communication tools to connect adults with Autism, family members, caregivers, friends, support workers, teachers, administrators and policymakers” and declaring: “We can all benefit from the opportunities for mutual support and encouragement and the sharing of knowledge and experience. Our efforts to promote positive approaches and best practices in supporting adults with Autism can help all who live and work on the front lines.”

At the same time we created an OAARSN Listserv to circulate Autism news and announcements to subscribers and added a Creative Supports Listserv in 2005. OAARSN met a need when there were few Autism resources on the Internet and virtually none on adult Autism issues. For many years with our large Listservs we agreed to post information and announcements relevant to children with Autism and also to adults living with other challenges more or less equivalent to severe Autism.

OAARSN has usefully publicized and reported on GSA’s various outreach activities in the past 24 years. These have included support group meetings; consultations by phone, email and in person; and presentations to meetings of community and provincial organizations. We have staged some larger events to kindle interest in innovative strategies, including Focus on Microboards (2001), Creative Supports for Vulnerable Citizens (2005), a Colloquium on the potential benefits of brokerage/facilitation of personal supports (2006), and premieres of films GSA sponsored to increase community acceptance of the complex movement and sensory differences in Autism.

GSA has managed special projects like ASPIRE (2001-2005) and part of ACES (2004-2008). GSA has advised on resources in libraries and resource centres and sponsored and launched films to increase community acceptance of the complex movement and sensory differences in Autism. GSA has also shared its experiences and model documents with other families, groups and agencies; responded to surveys, requests for interviews and appeals for help on any aspect of special needs; and critiqued and supported research and service projects that promote community understanding of difference and disability. GSA has touched many people—in the thousands–through its outreach. At its 2015 AGM, GSA resolved that the name “Bridges-Over-BarriersTM” be adopted for GSA’s outreach functions that may be distinguished from GSA’s role as Housing Trust.

Most GSA outreach has been prompted and guided by the ideas and perceptions of self-advocates, especially members of the Bridges Communication Group. More than 20 nonspeaking self-advocates have much to say with AAC (augmentative and alternative modes of communication) and want to have choice and control over their lives. In various combinations since 2004, they have met in Guelph from all over southern Ontario as a forum to share “struggles and strategies” and are connected with similar groups elsewhere. In 2005 the group’s leader asked GSA to administer donations and the business of special project bursaries. About ten of these have enabled Bridges members who do not speak to develop their communication skills or have paid for training of new communication assistants. Other funds have supported the making of resources such as films or books to help the larger community to understand and accept the different ways people may communicate. Bridges funds also help members to tell their individual stories in print, film or other media. Click here for more information on Bridges. For several years until the pandemic, Bridges members were supported to share in the annual Eden Mills Arts Festival as the Bridges Art Collaborative—a valuable form of community participation. Bridges outreach funds have also been used to help people who live with Autism or similar differences beyond the Bridges Communication Group.

Special outreach events in 2019 that also explored reliable communication support included:

  • STEPS Toward Inclusive Community, a free, public gathering on 30 March 2019 to herald World Autism Acceptance month with screenings of three films about living with Autism, launch of a new Autism book by an Ontario author on the spectrum, and displays of creative resources by about 20 community groups or individuals.
  • A three-day series of events in mid-August 2019 titled Our Communication Matters! Making the Bridges Dream Come Alive. The idea was sparked by interest shown at our STEPS event in the new film It’s My Voice—Believe Me! It is still very hard for people without voices to get training and support in whatever mode of communication works for them. So we offered three days of linked events including theory and practice, assessments and training in best practice, and a Bridges gathering focused on lessening the amount of physical support. Bridges members continue to benefit from the insights and support at this event. Two ideas we came up with were threaded through several sessions of our August events. One was to try our best in our communication skills so we could gradually lessen our physical dependence on our facilitators. The other idea was to make it possible for each communicator who wishes to earn Communication Credentials. These are documents based on a dossier or portfolio with evidence of competence in various skills, showing that we understand our options and can reliably express our wishes and priorities.
Records, Regulations, Policies and Procedures

To mark its 40th anniversary, GSA reviewed its formal legal documents—Bylaw, objects of incorporation, and policies and procedures. One reason is to conform to the new Ontario “ONCA” legislation. The Bylaw was passed by GSA members at the 2020 Annual General Meeting. In 2017, marking the 20th anniversary of GSA’s mission as Housing Trust with related outreach functions, we streamlined GSA’s records in hard copy and online.

In 2017 print copies of most GSA and related records were deposited in the Wellington County Archives, to add to the records already placed there in 2002 relating to Autism advocacy and service planning in Ontario and our region. Accession details of the earlier Autism Fonds: A2004.113, 2 pts, 1970-2003. The core material added for GSA for the period 1997-2017 is described at A2018.31. The following link provides more about the story of GSA:

GSA’s Annual General Meeting records from 1998 to 2017, including president’s report, agenda and minutes, and annual financial statements with detailed notes are available in this document.

Contact GSA about any of its roles, or to make a tax-creditable gift:
Guelph Services for the Autistic
16 Caribou Crescent, GUELPH, ON, N1E 1C9
Phone (519) 823-9232 Email: info-gsa@oaarsn.ca

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Please note that OAARSN provides resources for information purposes only. We do not endorse any treatment, program, product or service. The contents of this website are not medical, legal, technical or therapeutic advice. Information should be reviewed with qualified professionals. We will not be held responsible for misuse of information or for any adverse effects of recommendations mentioned on this website or on any other websites linked to it. Views, opinions or announcements posted by subscribers to any area of this site do not necessarily reflect those of OAARSN and we do not assume responsibility for any discrepancies or errors.