Supporting People with Decision-Making Impairments to be Full Economic Actors
By Yvette Maker, Senior Research Associate, Melbourne Social Equity Institute
Getting a new mobile phone plan, entering a contract for home and contents insurance, or signing up for a credit card are part of everyday life for most Australians. However, people who experience barriers to decision-making may find it difficult to engage in these consumer transactions.
Researchers at the University of Melbourne have been conducting a pilot study to identify the types of support that would assist people with decision-making impairments to engage in consumer transactions in the finance, telecommunications, insurance, and utilities industries.* The pilot study is part of a wider program of research to build expertise and tools for supporting people with decision-making impairments to be fully included in society as economic actors and to make decisions about their own lives.
The research team at the Melbourne Social Equity Institute collaborated with Mind Australia and Scope, and the study was guided by an expert Advisory Board that included representatives from the Australian Federation of Disability Organisations, the Australian Communications Consumer Action Network, Consumer Action Law Centre, Office of the Public Advocate (Victoria), the Telecommunications Industry Ombudsman, and Victoria Legal Aid.
The pilot study’s primary objectives were to:
- establish what supports people with decision-making impairments require for consumer transactions; and
- identify which support models might assist them to engage more equitably in consumer transactions.
The team interviewed people with decision-making impairments (the majority of whom had a diagnosis of psychosocial disability, such as Depression, Asperger’s Syndrome and Schizoaffective Disorder) about what challenges they experience when engaging in consumer transactions and what supports would be helpful. We also interviewed consumer advocates, consumer lawyers, and representatives from the finance and insurance sectors about their views on these matters.
Challenges and barriers to equitable participation in consumer transactions
The interviews revealed a number of challenges that people with decision-making impairments experience when engaging in consumer transactions. These include:
- lack of access to suitable (generally meaning affordable) products, and consequent financial hardship;
- lack of understanding of products and the inaccessibility of product information;
- lack of confidence to participate in transactions with large companies;
- communication barriers, such as difficulty expressing one’s wishes or difficulty interpreting information about a product or service; and
- mental health issues having a negative effect on the person’s consumer decisions.
Some industry representatives and advocates suggested that it could be beneficial for consumers to disclose their disability to a company to ensure that they have access to appropriate products and services. Other participants expressed concern that this could result in people being excluded from accessing products and services on a discriminatory basis, especially if salespeople are not aware and respectful of the rights of people with disability.
A need for greater access to support
The study participants identified access to support as being key to improving their ability to participate in consumer transactions. One consumer said:
- Just having someone there so that if you have moments, because a lot of people get anxiety and then they can’t talk. So if someone’s there, they can kind of start off themselves and if they get into any trouble, the other person can say “Well what’s she’s actually aiming for here is” … because it’s really easy for anyone with any diagnosis to have anxiety or panic attacks really. So I think it would be great, it would make a huge difference.
Participation in consumer transactions could thus be improved through access to support to gather and weigh up information, understand the options, and select the product that is right for the person.
Building support for consumer transactions
The research team is currently developing the next phase of the study which will involve designing and testing different models of support.
These models will follow the principles of supported decision-making established in the United Nations Convention on the Rights of Persons with Disabilities. Supported decision-making means providing support for people to exercise their legal capacity and make decisions about their own lives, giving primacy to their rights, will and preferences. This is a challenge to traditional regimes of substituted decision-making, where many people with disability are deprived of their legal capacity based on a perceived or actual lack of mental capacity, and other people are empowered to make decisions in that person’s ‘best interests’.
The pilot study participants had different views about what forms of support would be most suitable and useful for people with decision-making impairments to make decisions and participate equitably in consumer transactions. Based on these views, we have devised four complementary models that are necessary to build capacity across the community:
- Consumer-led support: developing the knowledge and self-advocacy skills of people with disability and their informal or individual supporters (family members, disability support workers and carers). This could involve outreach, training and providing accessible information.
- Provider-led support: developing the capacity of companies that provide services, like banks and telecommunications service providers, to support consumers. This could involve training and awareness-raising among front-line workers and other staff, and/or developing non-discriminatory support and referral processes.
- Service-led support: developing the capacity of community-based disability and mental health service providers (like Mind Australia and Scope). This could involve hosting a dedicated support person or team or building the capacity of existing staff.
- Advocate-led support: increasing the capacity of community legal centres or consumer advocacy organisations to provide support. This could involve training existing staff or hosting a dedicated support person.
The research team will develop these models with consumers, industry, and community-based service providers.
* We use the term ‘persons with decision-making impairments’ to refer to people who experience barriers to decision-making due to an impairment, such as an intellectual or mental impairment associated with cognitive or psychosocial disability. The research team acknowledges that language in this field is important and contested. When referring to impairment and disability, we use the meaning established in article 1 of the United Nations Convention on the Rights of Persons with Disabilities. It states that ‘[p]ersons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.’