We want people with disability to be in the driver’s seat of the National Disability Insurance Scheme (NDIS), in charge and leading change. We fought for the NDIS, and the NDIS belongs to us.
Some of us are missing out on the essential supports we need through the NDIS for a good life. This needs to change.
What Does The Australian Government Need To Do?
- Ensure the National Disability Insurance Agency (NDIA) has adequate, appropriately skilled staff to meet the needs of participants by:
- removing the staffing cap so that the NDIA can meet participant demand
- introducing a minimum quota of 51% of employment of people with disability, including at senior levels
- requiring all NDIA staff, board, contractors and Local Area Coordinators to be trained on disability rights, the social model of disability, and the UN Convention on the Rights of Persons with Disabilities (CRPD)
- providing one consistent contact person for all participant dealings with NDIA.
- Improve planning and access to services and supports by:
- implementing functional assessments rather than diagnostic assessments
- allowing us to review our own draft plans prior to approval
- improving access for priority groups, such as women, Aboriginal and Torres Strait Islander people and people from culturally and linguistically diverse (CALD) communities, as a matter of urgency
- increasing availability and access to services and supports in rural, regional and remote communities so that we receive all the supports identified in our plans
- increasing investment and roll-out of the Specialist Disability Accommodation (SDA) program to provide us with suitable housing in the community.
Why Do People With Disability Want These Changes?
The NDIS was meant to transform the way that we received our essential supports, introducing a national, universal system to replace the old, broken, unfair one. But the NDIS is not currently helping all of us.
Since 2015, the NDIA has been subject to a staffing cap of 3,000. As a result, $600 million has been spent on consultants and people have experienced huge delays in access, plans and reviews. While the cap was raised on 24 August 2018, this has not addressed the crisis in access and reviews. The staffing cap needs to be removed entirely, and the NDIA needs to significantly increase the number of staff with disability.
Access to the NDIS is very difficult for some of us. It is increasingly tough for those of us in rural and remote areas or who are Aboriginal and Torres Strait Islander or come from CALD communities to apply for and access the NDIS. The medical reports we need to provide are expensive, and some of us don’t speak the language of the disability or the medical system. The medical system also discriminates against us, so those of us from marginalised backgrounds are much less likely to have a diagnosis or reports.
We can also be disadvantaged by the environments we live in, such as group homes, boarding houses and other institutions. Many of us also struggle to differentiate our primary and secondary impairments as required by the current access application. These factors must be taken into account in assessing eligibility.
Due to these issues, many of us are under-represented in the NDIS:
- Women are only 38 per cent of participants
- People from CALD backgrounds are 7.7 percent of participants, despite a stated NDIA goal of 20 per cent CALD participants
- Aboriginal and Torres Strait Islander people are 5.4 percent of participants or about 9000, despite around 60,000 Aboriginal and Torres Strait Islander people in Australia having a severe or profound disability.
Functional assessment rather than medical diagnosis would help to address these concerns. PWDA welcomes the NDIA pilot on the use of functional assessment. However, the results of this pilot need to be released as a matter of priority and a free functional assessment options need to be rolled out for priority groups immediately.
Some of us are getting bad plans and are being left behind even when we do get access to the NDIS. Failure to address emerging inequities in the NDIS will lead to a two-tiered NDIS system. Those of us who are eligible for the NDIS, regardless of our background, identity, life experience or where we live, have a right to an NDIS plan that delivers choice and control over the services and supports we need.
If we get access to begin with, many of us have to negotiate for support to be included, often with planners who do not understand the impact of disability, and we don’t get to review our plans before approval. As a result, our plans are falling far short of the principles of ‘choice and control’ under the NDIS.
Many of us are missing out on the essential supports we need through the NDIS. These include those of us who:
- have a cognitive impairment
- live in boarding houses, and often previously lived in institutions
- interact with the justice system and other state/territory systems
- have multiple conditions that fit into multiple systems
- have chronic illness or chronic pain conditions
- have psychosocial disability
- have no family, friends or other informal supports in our lives
- have more than one of the experiences above.
We deserve excellent plans and packages. If we do not get them, we will not get the supports we need, may be at risk of harm, and end up in review, waiting for months.
The NDIA must release data on the correlation between package funding and demographics so that a clear picture of emerging inequities in funding and plans can be seen and responded to.
We have the right to live independently and be included in the community. However, for many of us, the housing system isn’t working. Despite having NDIS plans, we are still living in unsuitable congregate housing, such as nursing homes, boarding houses and group homes.
The NDIS SDA program aims to increase and improve housing choice for us. However, the implementation and roll-out of SDA is too slow. SDA funding should not be used to perpetuate existing congregate and segregated accommodation, including aged cared homes, group homes and Assisted Boarding Houses. These forms of accommodation should not be able to be registered to provide SDA. The delays in the full implementation of this program must be addressed as a matter of urgency.
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