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Research shows that siblings of people with disabilities have experiences during young adulthood — such as driving, socialising independently and moving out of home — that they often believe their brothers and sisters with disabilities will not have or will find harder to reach, and that they feel very aware of this comparative difference between them. Less research has, however, explored what siblings with disabilities think of this comparison. This represents a significant gap in the literature. Using accounts from 25 young adult siblings with disabilities and 21 without disabilities, this article compares how both view the comparison of their life experiences during young adulthood, revealing that siblings with disabilities have a more complex, nuanced and multi-faceted range of views about the comparison than their brothers and sisters without disabilities. The findings are discussed in light of the benefits of extending understandings of siblings with disabilities’ views, including the benefits for family relations.
Background:
Many countries use market forces to drive reform across disability supports and services. Over the last few decades, many countries have individualised budgets and devolved these to people with disability, so that they can purchase their own choice of supports from an available market of services.
Key points for discussion:
Such individualised, market-based schemes aim to extend choice and control to people with disability, but this is only achievable if the market operates effectively. Market stewardship has therefore become an important function of government in guiding markets and ensuring they operate effectively.
The type of evidence that governments tend to draw on in market stewardship is typically limited to inputs and outputs and has less insight into the outcomes services do or do not achieve. While this is a typical approach to market stewardship, we argue it is problematic and that a greater focus on outcomes is necessary.
Conclusions and implications:
To include a focus on outcomes, we argue that market stewards need to take account of the lived experience of people with disability. We present a framework for doing this, drawing on precedents where people with disability have contributed lived experience evidence within other policy, research, knowledge production and advocacy contexts.
With the lived experience evidence of people with disability included, market stewardship will be better able to take account of outcomes as they play out in the lives of those using the market and, ultimately, achieve greater choice and control for people with disability.
Australia is implementing an ambitious new approach to individualised disability support based on a social insurance model. In a world first, the National Disability Insurance Scheme (NDIS) is funded through a levy on income and general taxation and gives Australians with disability an entitlement to social service support. This chapter describes the NDIS approach and implementation so far and summarises concerns and challenges about the NDIS discussed in the literature. It uses data from an action research project to inform feasibility questions about how people find out about and receive the individualised support they need. The chapter highlights a basic gap in people’s familiarity with what individualised support is, how it works and how they might benefit from the new approach. A policy implication is that, with the expansion of individualised support, the public is likely to need various opportunities and forms of information sharing, to explore and learn from each other about what the new approach is and what its possibilities are.
