Evidence-making: 8 approaches for hearing from people with intellectual disability

By Ariella Meltzer

Tuesday July 24, 2018

CASE STUDY: What is involved in ensuring that the voices of people with intellectual disability can be heard in evidence-making? Dr Ariella Meltzer demonstrates her Team’s recent research on employment choices.

Social policy and social purpose initiatives are often designed for beneficiaries who cannot always easily contribute to the evidence-base about what works to assist them. Marginalisation from the policy process, lack of accommodation of communication impairments or low literacy and a distrust of systems that have not effectively helped them in the past can all mean that there are systemic barriers to contributing to evidence-making for policy for many people.

Yet ensuring that the evidence that supports social policies and programs is based on the lived experiences and views of beneficiaries is important. It helps in understanding the potential impact on their lives and helps to ensure that services and supports are well-targeted to what people say they need and want.

A range of processes are currently being used or are emerging to ensure that beneficiaries’ voices can be better heard in evidence-making for social policy. Inclusive, accessible, participatory and action research approaches, and co-design and co-research, are all commonly used for this purpose, and different approaches may suit different situations or groups whose voices need to be heard.

Accessible approaches for hearing from people with intellectual disability

Ensuring that data collection processes are accessible and flexible to the communication needs of participants is particularly important when aiming to gather evidence for social policy from people with intellectual disability. In this context, accessible and flexible data collection practices may include:

  • Using semi-structured qualitative data collection processes that can be adapted for individual participants
  • Asking questions in easy language
  • Incorporating ‘yes/no’ and ‘either/or’ questions (well-planned, so the questions are not leading)
  • Using Easy Read information and pictorial prompts
  • Allowing participants to have a trusted person present as a communication supporter
  • Drawing on people’s usual communication supports (e.g. alternative and augmentative communication systems, such as speaking through an iPad)
  • Being flexible in the length of participation and level of detail collected
  • Engaging researchers who have practice experience in the disability sector, and expertise in facilitating multiple forms of communication.

Using this combination of approaches, it often possible to gather new evidence from people with intellectual disability to inform the social policies and programs that are designed to assist them. This helps to ensure that the beneficiaries who social policy is designed to assist have a say in what works, and ultimately, can help to inform effective policy-making.

Perspectives about their employment choices

A recent project by our research team is an example of what can be achieved when accessible approaches are used to include the voices of people with intellectual disability in evidence-making. Our research team conducted a comparative study of the three main employment choices available to people with intellectual disability in Australia:

  1. Open employment (employment in the open job market with support)
  2. Supported employment (commonly called ‘sheltered employment’ internationally)
  3. Social enterprise employment (employment in a business that trades to fulfil a mission of employing people marginalised from the workforce, and reinvests profits back into this mission).

While there has been much research about the comparison of open and supported employment, our research was the first to include a three-way comparison with social enterprises. This meant that we could create new evidence about how social enterprise employment compares with the other options.

To make the comparison meaningful and ensure it captured the experiences of people with intellectual disability, we knew that we needed to include the types of accessible and flexible data collection strategies listed earlier. We did this in the research process, drawing on different strategies for different participants, depending on what worked best for them. Planning a variety of options into our research methods was important, so that we had all necessary supports on hand when needed. It allowed us to speak to people who varied in their communication from one-word answers to lengthy responses.

The end result was that our research generated new evidence about the three-way comparison between open, supported (sheltered) and social enterprise employment. The research found that:

  • In open employment, people with intellectual disability received higher pay and gained more connections with mainstream community members than in supported employment, but it was harder to find and maintain a job in open than supported employment and they were more likely to experience discrimination in the workplace.
  • In supported employment, people with intellectual disability received more encouragement, understanding and accommodation of their support needs than in open employment and it was easier to find and maintain a job in supported than open employment, but they received very low pay and made fewer connections with mainstream community members in supported than in open employment.
  • In social enterprise employment, people with intellectual disability said they received encouragement, understanding and accommodation of their support needs and an opportunity to develop connections with mainstream community members. It also offered other benefits, such as a heightened focus on their skill-development.

While social enterprises don’t solve all the problems of the other employment options, the evidence from our research shows that they provide the opportunity to combine some of the benefits of open and supported (sheltered) employment for people with intellectual disability, and this helps them to not always have to make a forced choice between the alternate benefits available from the other options.

As Australia seeks to expand social enterprise employment options for people with disability, including people with intellectual disability, seeing the new level of choice and benefit social enterprises can offer their employees with intellectual disability is important for building the evidence-base about how, why and in what circumstances this option works for this group.

Yet, importantly, without having used accessible and flexible data collection processes it would not have been possible to access this level of detail from people with intellectual disability themselves about how and why social enterprise employment works for them. With their perspectives included in their own voices and in an accessible way, there is a stronger case for moving forward and expanding social enterprise employment options for this group into the future.

Dr Ariella Meltzer is a Research Fellow at the Centre for Social Impact, UNSW Sydney.

This article was first published at Power to Persuade and republished with the author’s permission.

This article is based on the following publications:

Meltzer, A., Kayess, R. and Bates, S. (2018) People with intellectual disability’s perspectives about open, sheltered and social enterprise employment: Implications for expanding employment choice through social enterprises. Social Enterprise Journal, 14:2, 225-244.

Meltzer, A., Bates, S., Robinson, S., Kayess, R., Fisher, K.R. and Katz, I. (2016) What do people with intellectual disability think about their jobs and the support they receive at work? A comparative study of three employment support models: Final report (SPRC Report 16/16). Sydney: Social Policy Research Centre, UNSW

If you require a free/open access copies of articles, please email a.meltzer@unsw.edu.au.

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