Circles of support (CoS) – you might have heard of the term, but not know what it really means. In fact, CoS can be whatever you make of them. The idea of an intentional community which circles around a person with disability originated in Canada about 25 years ago and there are original circles that are still active from that time. The main aim of CoS is to increase the number of people who are interested and involved in the life of your loved one who has a disability, and who assist in helping the person reach their goals and be involved in their community. It is beneficial if parents, siblings, or other close family/friends are involved initially, but the idea is that this group will continue, even when/if family members are unable to be. In some ways it is increasing the security of support around the person with disability well into the future and plays a vital part in the safeguarding of a person with disability.
For many families the idea of developing a CoS arises when the person with disability is an adult, but it is never too early to think about who might be involved in your child’s life now and into the future. You may already have a strong extended family or friends who play a significant role, and you might like to formalise that a little.
Some CoS are very informal groups of people who come together periodically, and others take on much more formal aspects. A microboard is a form of a CoS, but the group of interested people takes on even more formality by becoming an incorporated body/not for profit association, which supports that one person. It has formal roles like other boards such as Chair, Secretary, Treasurer, etc., and a legally binding constitution.
One of the major issues as people with disabilities become older or their disability impacts their mobility or communication, can be social isolation. At school they are likely to have almost daily connections with their community, but as they grow beyond school, opportunities to connect can become less frequent. Will they find employment? Where might they live? Through all the transitional stages of life, a strong and close community of people who care about the person with disability can provide support, ideas and connections. This can be even more important if the person has intellectual disability, mobility or communication issues. Ideally, a CoS is meant to include people who travel alongside the person at the centre of the circle, assisting them to have a voice and work out what their life might look like.
Siblings often worry about the future for their brother or sister with disability if anything should happen to parents, which can significantly impact their mental wellbeing If a CoS is set up early in a young person’s life, while parents can still be involved, along with siblings and others, the foundations are set for an ongoing group of people who will look out for the person with disability. It can be a relief for siblings, especially those in small families, to know that they won’t have sole responsibility for the outcomes for their brother or sister. Navigating the disability support system through the NDIS can be complex and exhausting. CoS can help a sibling to build capacity and understanding of what is possible but also, sharing tasks amongst their dedicated CoS can make it less daunting. A CoS can contribute positively to the mental health and wellbeing of the whole family.
If you are looking for information about CoS, the COSAM website, which includes information about Microboards, is a good start. It includes a directory of different organisations so you can find something local to you. Other useful sites to explore include A guide to Circles of support – Disability Advocacy Resource Unit (DARU); Circles of Support (ric.org.au); Circles of Support Guide & Workbook Digital Edition | belongingmatters.
The DARU site also includes a video presentation by Theresa Micallef from Belonging Matters. It is an hour long but includes a lot of information and has a transcript for a quicker read. Building Community Networks – Circles of Support – Disability Advocacy Resource Unit (DARU)
The site states, Circles of Support are a process where intentional networks of people are built around a person with disability to assist them in the creation of a good life in community and support their decision making through developing trusted relationships.
Circles usually comprise members who are not paid to be part of the circle. However, some circles have engaged a disability support professional to act as a facilitator to help them get started.
I suggest doing as much reading and exploring of what might work for your family and start early. The natural connections we might share with family and friends can be extensive and very positive, but sometimes, and especially if a family is becoming more isolated, it is beneficial to widen those connections, either formally or informally. A CoS might well be the answer.