Little choice, no control

3 June 2021 | Posted In: #139 Winter 2021,

A planned overhaul of the National Disability Insurance Scheme has been soundly rejected by the disability sector. Christopher Kelly reports.

The federal government’s proposal to introduce independent assessors to review people’s eligibility for the NDIS has been slammed by Australia’s disability community. Under the changes — to be implemented later this year — important decisions about whether a person can access the scheme and how much funding they’ll receive will be based on a mandatory assessment undertaken by a health practitioner unknown to the individual being assessed.

In written submissions to a joint parliamentary committee exploring the proposal, disabled people’s organisations and other advocacy groups have denounced the move as “retrograde” and “fundamentally flawed”. “The disability community is deeply concerned with the introduction of independent assessments and the changes the National Disability Insurance Agency (NDIA) is proposing,” said Children and Young People with Disability Australia (CYDA) in a statement. Describing the reforms as “rushed and opaque”, CYDA added: “There is a lack of genuine engagement with the communities who will feel the impacts.”

It’s a complaint shared across the sector. “People with disabilities and their representatives have not been sufficiently consulted or included in either the decision to introduce independent assessments or the development of the proposed model of assessments,” said People with Disabilities ACT. “The continuing consultation process has lacked a commitment to be responsive to, and inclusive of, the views of people with disabilities.” Other areas of concern — and there are many — include: the fixed time limits of assessments (three hours); an assessor’s lack of specific disability knowledge or experience; and the use of unproven and oversimplistic standardised assessment tools.

Some background: in 2013, the NDIS was launched to support people with disability to access services and resources. However, since its implementation, the NDIS has come under fire for its confusing and restrictive access processes. Unnecessary barriers have meant that the NDIS supports only a fraction of Australia’s disability community — just 10 percent.

Following reports of difficulties and dissatisfaction with the scheme, the NDIA decided to trial an independent assessment pilot and review. The first pilot stage began in 2019 across nine regions in NSW. (A second pilot was set to take place in the first half of last year but was discontinued in March 2020 due to the COVID pandemic.)

Following the first pilot — and despite an acknowledgement that there were “significant limitations” with this initial experiment — a review of the National Disability Insurance Scheme Act 2013 was conducted. The Tune Review, as it became known, formed the basis for the decision to mandate the introduction of independent assessments for all users of the NDIS — current and future.

However, while the Tune Review indicated that the pilot resulted in “more consistent decisions and more equitable plan outcomes for participants”, it did not recommend universal and mandatory roll out of independent assessors without user choice or control over who would be assessing them.

Furthermore, the Tune Review not only defended a participant’s right to choose an assessor appropriate for their personal circumstance, but also their right to challenge outcomes after assessments were made. So far, neither of these recommendations have been included in the reform plans released by the NDIA.

“In absence of protections and flexibility for participants, we are extremely concerned that basic funding decisions on an assessment conducted by an entirely impartial assessor who does not know the individual will likely result in an incorrect evaluation of an individual’s capacity, and in turn, a denial of supports that are required,” said Women with Disabilities Australia (WWDA).

When WWDA asked its members how they felt about the prospect of being interviewed by a random assessor, the replies demonstrated “high levels of concern” within the disability community. “These [independent assessments] will not help at all,” said one. “I need specialists who are trained in and understand my disability.” Another said: “I’m terrified. My history is extremely complex and even my GP of 30 years often defers to me on ideas about what might be happening inside my body.” A third commented: “Having to explain ten years of what my specialist already knows to an independent assessor who may not specialise in a field relevant to my disabilities seems problematic.”

CYDA survey data further reflects community concern, with 80 percent of respondents fearful that independent assessments would affect them negatively. “The proposed reforms will introduce unjust and unreasonable mechanisms that will limit the ability for people with disability to have a say in the decisions that impact their lives,” said CYDA.

The responses to CYDA’s survey are consistent with another conducted by People with Disability Australia. Around three-quarters of its members thought that a rapid roll out of independent assessments was a “bad” or “extremely bad” idea. Half of the respondents reported feeling “overwhelmed” by the changes, and more than 60 percent said they felt “defeated” by the process.

The NDIA also approached the community for feedback. However, respondents were denied an opportunity to voice their opinions on independent assessments. Instead, the consultation process was conducted in such a way that respondents were led to assume that the proposed changes were already very much a given and set in stone. “Despite the clear and warranted concerns of people with disability and their families and caregivers, the community consultation process offered by the NDIA has been narrow and feels disingenuous, which risks exacerbating existing community distrust of the agency,” said CYDA.

The Victorian Advocacy League for Individuals with Disability (VALID)— shares such distrust. In VALID’s view: “The NDIA has failed to produce clear evidence to justify compulsory assessments. The NDIA has not done the work needed to prove to people with disabilities and their families that compulsory assessments will uphold and protect their human rights. We believe that the NDIA’s proposal for independent assessments puts the NDIS that people with disabilities and their families fought for in danger.”

It’s not just people with disability and their representative orgs that have concerns over the new assessment process. Health professionals are worried too. Allied Health Professions Australia (AHPA) is calling for further information to be made available about the process and for “robust evaluation measures” to be introduced. Specifically, AHPA is seeking clarity on “whether the independent assessment toolkit is appropriate for all participants and types of disability”.

When WWDA asked its members their views on the appropriateness of adopting a one-size-fits-all standardised model of assessment, the feedback was far from positive. “This topic has concerned me greatly,” said a respondent. “I feel that those who designed this approach have not really understood the ramifications. Nearly everyone with a disability will tell you there is so much more to their disability to what is seen on the surface.” Another added: “As someone with multiple issues that do not fit into the standard textbook tick boxes, I am very fearful of blanket assessments that do not take into account people’s individual needs and circumstances.”

And as the Tune Review identified, the implementation of standardised assessments would be particularly problematic for First Nations people, culturally and linguistically diverse communities, women and girls with disability, and other groups such as non-binary people.

In its submission, WWDA voiced serious concerns over “the limitations [standardised assessments] hold when accounting for their inherent prejudices towards marginalised cohorts of people with disability”. There are fears that standardised assessment tools will fail to accurately capture the experiences and needs of marginalised populations and, in doing so, deny them access.

Socially and economically marginalised individuals are also handicapped when it comes to accessing the NDIS. Research has found that when disability is overlaid with socio-economic disadvantage, the capacity for people with disability to participate in a complex program such as the NDIS becomes challenging to say the least.

The system as it stands favours people with strong English and literacy skills who are more likely to understand the process and better able to advocate for themselves. “For the NDIS to be truly more effective and fairer,” said the CYDA submission, “targeting inequities in the service system and inequities in navigating the service system must be a priority.”

As well as concerns, the sector’s submissions to the parliamentary committee include a raft of recommendations. The first of which is for the NDIA to halt the overhaul and cease the roll out of mandatory independent assessments. Then, say sector orgs, the assessment process needs to be re-examined and alternative approaches considered.

Crucially, any redesign of the NDIS must include “genuine input” from people with disability and their representative organisations. “This,” says CYDA, “is the only way to ensure the process upholds the authority, lived expertise and rights of people with disability, and to maintain the true principle of the NDIS — greater choice and control.”