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April 2016 Planning Café: Networks of Support

April Planning Café: Networks of Support

CDAH’s April Planning Café dived into what’s involved in setting up and sustaining networks of support around a person with disability and their family. We learned a lot from our guest facilitator, Libby Ellis, who shared some of the learning she has gained from being on her brother’s network of support as well as the many families she has assisted in her work.
Click here to check out a PDF of Libby’s PowerPoint on support networks. Here is a Word version.We also learned about the nuts and bolts of setting up and sustaining a circle of support from Linda Hughes and Laurel Lambert. You can click here to check out a short video about Laurel’s family’s circle of support.

CDAH’s treasurer, Ron Prince, introduced us to the concept of a microboard, a slightly more formal support network which his family has set up.

  • A Microboard is an Incorporated Association.
  • It is a not-for-profit “organisation”, with a constitution that can be set up for an individual.

Find out more about microboards at:
http://microboard.org.au/ 
http://microboardscanberra.org.au/author/coordinator/ 
http://www.velacanada.org/vela-microboards

Some things to think about

  • The need to network with others is part of being human, so is not a new concept.
  • We all need others who support our life vision and support us to achieve it.
  • Most people have a natural or informal network which offers practical and emotional support and assistance. We know that making friends and connecting with the community can be difficult for many people with disability. Sometimes we need support to make decisions too, so a network of support is an organised, intentional and action-oriented approach.
  • A network of support can take whatever form works for you. It usually involves a group of people coming together from time to time. It can be a meal out together, drinks on the deck or even a weekend retreat if you want to spend some quality time together.
  • The role and focus of a network of support will vary depending on the stage of life of the person at the centre of the network (the person with disability). For example, a “Circle of Friends” initiative helps children with disability make friends at school and beyond.
  • Networks of support often get started in times of transition such as moving from primary school to high school; when a person is leaving school, finding a job or moving out of home. Many families start their circle of support when they feel it is time to begin thinking about and planning for what will happen to the family member with disability when his or her parents die.
  • Many people fear asking others to join their network. They feel they don’t have anyone to call on or that those they know are too busy or wouldn’t want to be involved. Often a fear of rejection stops us from asking. Some people find it helpful to ask themselves “What have I got to lose?” or “What is the alternative if I don’t ask?”…sometimes thinking about what might happen in the person’s life without a network of support can help get us over the hurdle of asking.  Click here for Libby Ellis' advice on making the ask...
  • If you don’t feel comfortable to ask, you could have someone else ask for you. That could be their role.
  • Keep what you ask specific and concrete: “Would you come to a meeting to work with us on our NDIS plan?” or “Would you run the meetings for us?” “Would you introduce us to some people at your local sporting group?” etc.
  • Invite people into specific roles. Think about their skills. Maybe they are good at solving problems or organising. Maybe they are good with money and budgeting. Or perhaps they are really well connected to others in your community or in the area in which you are trying to make connections. Ask people to tell you about their skill set.
  • People don’t have to live near you to be part of your network of support. You can use Skype or Facetime or other technology for them to be present at the meeting from another location, or keep them in the loop using email.
  • Talk about the network of support throughout your networks. You might know someone you wouldn’t have thought of asking or meet new people down the track.
  • Invite positive people on to your network of support. Invite people who have different ideas and ways of approaching things than you do.
  • Networks of support need to take action and not just talk about things. Ask people to do tasks that need to be done.
  • If you’re feeling stuck socially – create a role in your network of support for a “social facilitator” or an “opportunity finder.”

NDIS Tips
As always at our Planning Cafes, the NDIS was a hot topic. Here are some of the thoughts and suggestions we talked about:

  • At best, you’ll only get what you ask for so think as broadly as you can about what would be helpful. Always link what you ask for to your goals.
  • You might want to ask for capacity building funds to:
    • Help you set up a network of support such as a circle of support or microboard.
    • Help you think about the purpose of your network of support – the why, the who and the how.
    • Train people on your circle of support or microboard.
    • Help you and your circle of support or microboard to self-direct or manage your own supports and to think about things like employing your own support workers.
    • Engage an independent facilitator to help you run your meetings – especially at the beginning.

Other great resources that were shared at Planning Cafe included:
InCharge - Cultivating successful roles - Engineering the ordinary
Resourcing Families - Circles of Support
InCharge - Getting creative with paid support
Michael Kendrick - The Natural Authority of Families

Get in contact with us if you have any questions, or if you'd like more information!

A video about the NDIS and the importance of peer support. Made by people with intellectual disability for people with intellectual disability.

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