The Top Ten Tips Sheets provide practical information for ensuring people with cognitive disabilities have a real and equal voice at the table.
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Civic participation is a human right enshrined in legislation including the United Nations Convention on the Rights of People with Disabilities (UNCRPD). However, the voice of people with cognitive disabilities is often the least heard. More often than not, within government, services, community and mainstream organisations decisions are made about people with cognitive disabilities without people with cognitive disabilities.
So how can organisations ensure people with intellectual disabilities, acquired brain injury and other complex communication needs are included? We’ve compiled a list of tips for engaging consumer advocates in all levels of decision-making.
Tip 1. Understand Consumer Participation
Consumer participation is when people with disabilities are actively involved in decision-making and participate in developing, designing, implementing and evaluating policies, programs and services which impact their lives. It can occur at all levels within your organisation, from the Board, to staff recruitment, project evaluation, resource development to advisory groups. Download the tip sheets to read more about consumer participation.
Tip 2. Be Prepared
Committing to consumer participation involving people with cognitive disabilities usually requires a shift in attitudes and the way things are traditionally done. First, promote and embed a culture of equality, respect, shared learning, deep listening and a commitment to action and change. Make sure the chair or facilitator of your meetings is on board (so to speak). This might involve committing to inclusive training for staff, changes to policies and procedures and removing barriers to participation. There are also lots of practical things to consider before consumer advocates arrive at your board meeting, consultation event or workplace. Download the tipsheets to see our checklist.
Tip 3. Define the Role
How do you ensure that this isn’t just a tokenistic exercise? How do you ensure that the consumer advocates and people within your organisation are all on the same page about the purpose and scope of consumer participation? Be clear about these expectations, define the role and provide accessible information that gives a clear snapshot of the timeline, remuneration and purpose.
Tip 4. Identify and Remove Barriers
One of the first steps is to ask people about their access requirements. Ask them what supports are required to ensure that they are able to have equal input. Think about the way information is provided, what communication methods you use, and whether there are any social or economic obstacles to remove. Our tipsheets have lots of ideas about the types of access needs that people with cognitive disabilities often encounter when attending meetings.
Tip 5. Provide Accessible Information
Amanda Milliar, a member of Reinforce, a self advocacy group run by and for people with an intellectual disability has three main tips for making information accessible;
- “Send out information before the meeting and have someone sit with us and go through the agenda and the minutes.
- Easy English from the word go.
- Have an agenda in Big Print”
Everyone is different. Find out from your consumer advocates how they prefer to access information. Check out examples of accessible invitations and agendas here. More links and suggestions can be found in the tipsheets.
Tip 6. Offer Hands On Support
People with complex communication needs often require an interpreter. Similarly, people with an intellectual disability or acquired brain injury often require access to a paid one-to-one inclusion support person of their choosing. More information about the role of an inclusion support person can be found here.
Tip 7. Roll Out the Welcome Mat
Ensure that consumer representatives feel welcomed and included from beginning to end. This means reaching out to them before the event, ensuring that they feel valued during the event and following up with them after the event. Some settings can be intimidating. Give some thought to how you will roll out the welcome mat.
Tip 8.Help Everyone Understand
You could have an accessible agenda, background papers and powerpoint presentation, but still have an inaccessible meeting. The way you conduct the meeting, how people speak and the speed of conversation can all have an impact. Francesca Lee and Peta Ferguson from Brain Injury Matters said; “A lot of information can be confusing, talking about different projects it can be hard to follow and confusing… Make sure you don’t talk over people, record minutes using dot points and don’t go off topic”
Tip 9. Give Everyone a Say
This tip is deceptively simple. You might think that it’s enough to invite the right people to the meeting. But if a consumer representative feels intimidated, lacks confidence, or if the conversation skips ahead before they’ve had a chance to reflect and respond, you might have lost your opportunity to hear their unique insight. Download the tipsheet for some practical ways that the chair and everyone on the committee can ensure everyone has a say.
Tip 10. Evaluate and Do it Better
If a tree falls in the wood and no one is there to hear it, does it make a sound? If consumer participation occurs and no one is there to evaluate it, was it a real and equal voice at the table? It is good practice to adopt an evaluation model to suit your organisation. Ideally you will measure the process, the short term impacts and the longer-term outcomes. Click here for some resources about evaluation. And don’t forget to ensure the evaluation process and its reporting is also accessible!
To help us with our evaluation, we would love to know how useful this article and the accompanying resource has been for you. Please let us know.