Want to get the voice of people with disability in policy planning or program evaluation, but unsure how to go about it?
In NSW, government agencies and local councils need to develop disability inclusion action plans (DIAPs) with people with disability. More broadly, as policy co-design catches on, government agencies need to make sure consultation processes are accessible and inclusive.
A commitment to inclusion and attention to access upfront and along the way will enable people with disability to shape policies that affect their lives and communities.
When our Principal Consultant, Jade Maloney, worked with Mosman Council on their DIAP, both organisations had a clear commitment to making the process and the final product accessible and inclusive. This meant using accessible venues and working with our partner, the Information Access Group, to produce an Easy Read consultation guide, as well as converting the final Mosman DIAP into Easy Read.
Easy Read is a way of presenting information in a way that is easy to understand. In its simplest form, it uses images to support text, a large font size and plenty of white space to increase readability. It makes documents more accessible for people with intellectual disability, people with literacy issue and people who speak English as a second language.
“We’re committed to ‘nothing about us without us’”, Principal Consultant, Jade Maloney, says. “But we’re also conscious that it can be very difficult for people with disability to even get into community consultations, let alone share their views. So we need to make sure we provide information in accessible formats, use venues and formats that are accessible, give people time and different options to share their views.
“In recent years, we’ve worked with the Information Access Group on a range of policy development and evaluation projects. We’ve found the Easy Read versions have worked well to break down complex concepts and give people with intellectual disability the space to share their views.
“When we ran the public consultation sessions for the National Disability Insurance Scheme (NDIS) Quality and Safeguard Framework we also developed a process to make sure we’d covered off on all access requirements—from physical access for people with limited mobility, hearing loops and closed captioning for people with hearing impairments and Auslan interpreters for those who use sign language.
“We’re currently putting this experience into practice again working with Fairfield City Council to develop their DIAP."
You can see what actions Mosman Council is taking to increase inclusion and job opportunities for people with disability and make it easier for people to get around in their community in their DIAP.
Formal ethics approval processes designed to protect study participants are often causing their own unintended harms in the context of program evaluation.
This is the somewhat controversial message, Principal Consultants Sue Leahy and Jade Maloney, gave to a full Australasian Evaluation Society (NSW) forum, hot on the heels of their presentation at last year’s AES conference in Perth.
They don’t deny that ethical practice is critical to evaluation, just that formal ethics approval processes are always needed or always result in an ethical evaluation.
“It’s our experience that the rules around ethics approval are often applied differently across government and that the requirement for external approval can mean the voice of the ’vulnerable’ people accessing the service is not heard in the evaluation because of the timeframes or because the consent process is overwhelming,” Jade says.
When it comes to consulting with Aboriginal communities in NSW, it gets even more difficult.
“While the principles around ensuring Aboriginal communities have ownership of the research in their communities are right,” Sue says, “We question the characterisation of all Aboriginal people as vulnerable. We also find the timeframes for approval through the Aboriginal Health and Medical Research Council can mean that consultation with Aboriginal communities is squeezed out of the evaluation timeframe.
The main problem seems to be that ethics processes were set up to approve clinical trials, but evaluations are not interventions. That’s why ARTD is driving a discussion in the evaluation community about options to improve the process.
AES members at the forum recognised that ethics approval processes bring significant benefits to the evaluation process, but they agreed change is needed. Over the coming months, ARTD hopes to explore options with colleagues, and to work on guidelines to help governments identify when they need formal ethics approval processes.