Every microboard will be different. They will meet in different ways, have a wide variety of kinds of people involved in them and do different kinds of work because the people at the centre is a unique person. But there are common values and practices that must underpin the work that they do or there is a danger of impinging on the human rights of the person with a disability at the centre.
Vela Canada who established Microboards in 1989 and are now supporting over 1000 Microboards and provide guidelines for best practice. The Canadian experience has shown that Microboards can be made up of people who may be loving and caring, who are trying to do the best for the person at the centre of the Microboard yet they can still unknowingly and unintentionally do things that don’t support the person at the centre’s human rights.
To protect these folks with disability at the centre of Microboards they have developed and implemented these non negotiable values and principles.
My own son’s Microboard makes every effort to put the values and principles of Vela into action. We are not the perfect example of a Microboard and we make plenty of mistakes. I say this to encourage you to just get started if you are thinking the Microboard approach might be the way to go for your family member. Here are the principles that will guide you and help to safeguard the human rights of your family member.
Microboard members must establish and maintain a personal relationship with the person for whom the board or group is created.
All the people in the Microboard or circle of support need to get to know the person at their centre well by spending time with them, observing and listening carefully to the person. This helps them to become more familiar with the likes, dislikes, skills, hopes and dreams of the person at the centre of the circle or Microboard and become better advocates for them.
It isn’t necessary for all members to know the person well before they can be invited to join but they must work towards getting to know them.
When my son’s Microboard first formed as a circle of support I spent a lot of time helping them get to know him. I did this by modelling how to interact with him at social functions, answering any questions they had and highlighting the things that he liked and didn’t like. I had to be very mindful that when someone offered to help or hang out with him that I didn’t say no, its ok I’ll do it. I needed to let them into his life. That took about two years. This stuff doesn’t happen quickly.
All people are assumed to have the capacity for self-determination. This capacity will be acknowledged, respected, and demonstrated in all of the dealings of the Microboard.
For people who have complex communication needs Microboard members need to understand that just because a person is unable to speak this does not necessarily mean that they have nothing to say or do not understand. Their bodies may not let them respond in a way that others look for as an indication of understanding and this can lead to wrongly labelling the person as not been capable of understanding.
There are many examples of people who have been unable to speak that have still been able to understand – two well known people are Helen Keller and Carly Fleishman.
Members need to assume that the person has the competence to learn to be involved in the activities of the circle or the Microboard. It doesn’t mean focusing on the person’s capacity or lack of it. Rather it’s about focussing on teaching the skills and providing the right support to learn to make decisions and be involved. Learning to be involved in decision making may take several years or even a life time.
My own son often doesn’t even want to be in the same room when we have Microboard meetings! So we are gradually working on activities that encourage him to be in the same room. We will then work on talking with him using his alternative communication method about some of the things we are talking about. I also talk about these things with him after meetings. We also observe Isaac’s reaction to decisions that we have made over a period of time to see if he is happy with out decision. If not, then we reverse it and go back to the drawing board. I can’t tell for sure if he understands or not but assuming he can learn does less harm.
All planning and decisions made by a Microboard or Circle of Support will demonstrate regard for the person’s safety, comfort, and dignity, with consistent respect for his/her needs, wishes, interests, and strengths.
This is called person-centered planning. Our sons and daughters with disabilities can be very vulnerable to physical injury, neglect, abuse, social isolation, not being heard, being taken advantage of and feeling unsafe which can lead to anxiety and challenging behaviour. Like all parents I want to protect my son from these things. Bringing other people into our children’s lives can be scary.
It is important to welcome ideas from Microboard members to encourage their confidence and participation. Ideas are never immediately dismissed on the grounds of being too risky. However we always work through what the risks to my son might be in terms of his safety, comfort and dignity and see if we can come up with safeguards to prevent or manage these risks to a level that is acceptable. If we can’t do this then we move on.
An example of how my son’s Microboard is working towards keeping him safe is his medical emergency plan. My son is particularly vulnerable when he is in hospital. Medical staff are often very unfamiliar with dealing with people with disabilities and may inadvertently make him feel very anxious, give him inappropriate food or medications or even miss diagnosing serious health issues. His Microboard is currently working on a medical emergency plan so that if he goes into hospital there will be a group of people who can inform the medical staff of how best to support him and it isn’t just left to his parents.
Microboard members will act as sponsors to the community, ensuring the person participates in community activities with Microboard members (e.g. family functions, social events).
This is done in ways that are natural for each of the people involved and needs to be done in a light touch way.
This looks like Microboard members introducing the person at the centre of the circle in light touch ways and slowly building up social connections.
You also cannot roster your friends. They are not your work team members so you must be mindful of how they would like to contribute. It just doesn’t work if you assign time consuming tasks that are not in their skill area. Get to know their lives and their skill areas slowly so that you know that you can ask if they might like to do some easy things they can do that will fit into what they are doing anyway.
A good exercise which we have done recently is to ask members what they feel their legacy might be when they leave the Microboard. It helps them articulate what they feel their contribution could be and makes them feel that its ok and expected that they will eventually leave the group.
Building social connections also requires a light touch. Asking people straight away if they could be your child’s friend when you have only just met them will probably make them run a mile.
Recently one of my son’s Microboard members and some of her friends went to Floriade with my son. She had talked with her friends many times previously about Isaac, showed them photos and talked about the fun things they had been doing on Facebook. She built up their interest in meeting him slowly. She eventually asked if they would like to join her and my son in an outing to Floriade – they all said yes!.
Ensure the person has the opportunity to both receive from and give to his/her community, as well as with other individuals in his/her network.
Reciprocal and interdependent relationships is the glue that keeps circles and microboards together. You are not trying to build a series of one off relationships. You are trying to build a group that is much like a family.
We are exploring ways that Isaac can give back to the members of the circle and to others in the community. He sometimes collects people’s mail when they are away and feeds their pets. At meetings he will carry out the tea and coffee and greet people as they arrive.