Impact Feature Issue on Self-Determination and Supported Decision-Making for People with Intellectual, Developmental, and Other Disabilities

“When Grace finished school a few years ago, all she wanted to do was move out of home, crank up the music and live her own life. Pretty much the same as many other young adults keen to begin leading an independent lifestyle – except that in Grace’s case she has mild cerebral palsy, a mild intellectual disability, and epilepsy. Grace’s parents, Wendy and Neville, backed their daughter’s ambition but the supported accommodation options in the far western New South Wales town of Broken Hill were limited for a young woman of Grace’s age….Enter the National Disability Insurance Scheme (NDIS) and Local Area Coordinator Michael, who works for NDIS partner Social Futures in Broken Hill. During Grace’s pre-planning midway through 2017, Michael identified a need for Grace to build her social inclusion by participating in day programs, obtaining her driver’s license, and developing her ability to live independently with the help of support workers. One year on and Grace is so busy she barely has time to watch her favorite TV shows House Rules and Home and Away. ‘I always lived at home until the NDIS came through,’ says Grace. ‘I always wanted my own space and now I’ve got it….I want to work with little kids and I’ll be starting my TAFE Certificate III in Childcare next year.’” (Australian Department of Human Services, 2019)

This ambitious Scheme was bound to face challenges transforming disability services and workforce practices from the security of block-funding to a market-based model.

Australia’s National Disability Insurance Scheme (NDIS) has radically changed how supports are provided to people with disability under the age of 65 years (NDIS, 2019c). An independent review of block-funded disability services in 2011 found that disability services  were “...underfunded, unfair, fragmented, and inefficient" (Productivity Commission, 2011, p. 2). This led to the creation of the NDIS in 2013 based on individual funding. Adding a small tax increase to existing disability funding, the Scheme is expected to provide individual support to 460,000 people by the end of 2019, and to promote the inclusion of all people with disability in mainstream services and community activities (Parliament of Australia, 2017). The National Disability Insurance Agency (NDIA) administers the Scheme.

The Two Parts of the NDIS 

There are two parts to the NDIS: individualized support for those who meet eligibility criteria, and a program called Information, Linkages and Capacity Building (ILC) that is intended to assist all people with disability to access mainstream services (NDIS, 2019e). NDIS applicants have to pass a rigorous eligibility assessment before receiving individual support. After being assessed as eligible, the person has a formal planning meeting where their plan is agreed to and a budget allocated. This is sent to the NDIA for approval. The plan can include funds for a coordinator to assist in its implementation. The NDIA offers three management options (NDIS, 2019f). People can “self-manage” all or part of the funds and take responsibility for purchasing supports and services from the open market. Second, they can choose a registered NDIS plan manager to “plan manage” their supports. Or third, they can be “NDIA managed,” which restricts where services can be purchased. 

The second part of the NDIS – Information, Linkages and Capacity Building (ILC) – helps all people with disability “access mainstream services, such as health, housing and education; access community services, such as sports clubs and libraries; and maintain informal supports, such as family and friends” (Parliament of Australia, 2017). There has been a succession of ILC funding rounds available to disability and other services for projects designed to support and promote inclusion of people with disabilities within the broader community (NDIS, 2019b).

In the original NDIS design, it was intended that NDIA staff would chair planning meetings, and Local Area Coordinators (LACs) employed within ILC would have a broad community outreach and development role. LACs were to work with mainstream services to promote the inclusion of people with disability, provide information to all people with disability about the NDIS and other community services, and assist people to prepare an NDIS application. However, funding cuts led to NDIA staff numbers being capped, and LACs being reassigned to chair planning meetings (People with Disability Australia, 2019). LACs send proposed plans to the NDIA for approval (NDIS, 2019d). There is now confusion about the purpose of the ILC program (Productivity Commission, 2019 ), as LACs do not have time to undertake their community development role (Mavromaras, Moskos, Mahuteau, & Isherwood, 2018).  

The Legislation and Its Implementation

Legislation enshrines NDIS principles and objectives in the National Disability Insurance Scheme Act of 2013 (Commonwealth of Australia, 2013). This progressive legislation was welcomed by disability advocates who fought hard for the Scheme. The Act requires the NDIS to promote individual choice and control; provide reasonable and necessary supports for people to identify their goals and plan the delivery of their supports; to maximize people’s independence and social and economic participation in the community; facilitate the development of a nationally consistent approach to access, planning, and funding of supports; promote the provision of high quality and innovative supports, and raise community awareness of the issues that limit social and economic participation (Section 3).

While the NDIS legislation is widely celebrated, its implementation has been impeded by political and funding issues. The Labor Government introduced the NDIS immediately prior to the 2013 election amid widespread concerns that the Scheme might be stymied if the opposition came to power. An independent review likened the hurried launch of the Scheme to “a plane that took off before it had been fully built and is being completed while it is in the air” (Whalan, Acton, & Harmer, 2014, p.7).  The Liberal and National Party coalition won the election and they have curtailed the vision of the NDIS and its spending. There have been severe NDIA staffing cuts, an underspend of $4.6 billion in the 2018-19 government budget (Australian Broadcasting Commission, 2019), and a recent announcement that the NDIS legislation will be reviewed (Australian Government, 2019).

Australia’s National Disability Insurance Scheme (NDIS) has radically changed how supports are provided to people with disability under the age of 65 years.

While the NDIS does not fund housing or medical services, it does fund home modifications and health therapies to assist people to live as independently as possible. The boundaries between the NDIS and housing, health, and education services are often blurred and are still being negotiated. The NDIS has supported long-established not-for-profit service providers in their transition to the NDIS by providing information sessions, online materials, and ILC grants. However, many have struggled to adjust to the new culture and processes and to compete with for-profit services entering the market. Many older services find the NDIS administrative and IT processes challenging, and struggle to be as responsive and flexible as many people with disabilities now expect (National Disability Services, 2019). People particularly like new options to select their support workers and know who will enter their home to provide personal care. New online recruitment services that facilitate direct communication between the client/consumer and the worker, such as MABLE (2019) and Hireup (2019), are gaining popularity. 

Amid criticisms of the NDIS’s implementation, there are many heart-warming stories of people with disabilities who have successfully navigated the NDIS application and planning processes and have a plan that provides them with adequate funding to achieve a full and satisfactory life (NDIS, 2019a). Factors that appear to result in successful planning outcomes in the NDIS and individual funding programs in general are: having information about funding rules and opportunities; preparing for the formal NDIS planning meeting and attending with goals in mind; taking an advocate if needed; and being lucky in having an NDIS planner who is knowledgeable, empathetic, and a creative thinker (Mavromaras et al., 2018). 

What the Data Show Thus Far

Quarterly government reports provide data on the NDIS’s implementation, participation rates, and outcomes achieved. These tend to emphasize NDIS achievements. The March 2019 report shows improved individual outcomes, including increased independence in children (65%); increase in social and community participation (11%); high satisfaction with planning processes (88% “very good” or “good”); more choice and control over decisions (75%); and more social and community participation (46%) (Council of Australian Governments, 2019, p. 20). However, the report also states that in 2017-18 only 69% of the funds committed to individual plans were utilized. Although the Government argued that this underspend was due to people taking time to learn how to use their funding, it seems that the cut to support and coordination has limited people’s ability to utilize their funds (People with Disability Australia, 2019).

An independent NDIS evaluation also reported a mix of positive and negative outcomes, while noting that people with higher capability achieve the best outcomes (Mavromaras, et al., 2018). They found that processes varied across the nation; there was a lack of transparency regarding planning decisions and funding allocations; and inadequate explanations when funding proposals were rejected. The Administrative Appeals Tribunal (AAT) hears appeals against NDIA planning decisions (Administrative Appeals Tribunal, 2018). This has delivered some stinging public criticisms of the NDIA.  

Conclusion

This ambitious scheme was bound to face challenges transforming disability services and workforce practices from the security of block funding to a market-based model. Arguably, the change of government and deviation from the original NDIS vision has created additional obstacles. The NDIS is creating new opportunities and better outcomes for people with intellectual, developmental, and other disabilities. There are many features that others could emulate. However, there needs to be more assistance for people needing support to navigate this complex Scheme. Funding cuts have derailed the original plans for LACs to reach out to people with special needs and support them through the planning process, and for coordinators to help people implement plans. While the NDIS has achieved much and has future potential, it remains to be seen if it can provide the necessary supports to ensure that all people with disabilities can achieve their goals and reach their potential.