Inquiry into the implementation, Performance and Governance of the

National Disability Insurance Scheme – Independent Assessments under the National Disability Insurance Scheme

Committee Secretary, Joint Standing Committee on the National Disability Insurance Scheme, P.O. Box 6100, Department of the Senate, Parliament House, CANBERRA ACT 2600 31 March, 2021

Dear Sir / Madam,

Re: Inquiry into the implementation, Performance and Governance of the National Disability Insurance Scheme – Independent Assessments under the National Disability Insurance Scheme

On 29 March, 2021, Prime Minister, Scott Morrison announced a Cabinet reshuffle. Senator Linda Reynolds was named as the Minister responsible for the National Disability Insurance Scheme (NDIS).

The appointment of the new Minister is what now prompts me to seek to add my voice to the growing number of voices calling for a halt to the planned, mid-year introduction of mandatory independent assessments for all current and future NDIS participants.

Specifically, I call upon Minister Reynolds to:

• review and reverse the decision of the former Minister, Stuart Robert, to proceed with the introduction of mandatory Independent Assessments by mid-2021, until a more comprehensive consultation and co-design exercise with key stakeholders, is undertaken;

• recognise that people with disabilities must have greater direct involvement in the co- design and implementation of any reforms likely to impact upon the operations of the NDIS, in accordance with both the principles of the CRPDi and the aims and objectives of the NDIS Act 2013;

• acknowledge and reaffirm that the principles of the CRPD and the aims and objectives of the NDIS Act 2013 remain as fundamental elements of the NDIS and that, as such, independence, participation through respected decision making and greater choice through controlled risk taking by people with disabilities themselves, remain paramount objectives of the NDIS;

• review and re-evaluate any proposed independent assessment procedures that primarily rely on “impartial data and consistent criteria”ii in order to ensure that individual functional capacity is fully and comprehensively assessed using a flexible range of approved assessment tools;

• reaffirm that the provision of “reasonable and necessary”iii supports to individual participants remains a fundamental objective of the NDIS;

6. establish mechanisms to ensure that NDIS Independent Assessment procedures are made subject to accessible, affordable and timely appeal processes;

7. recognise and acknowledge that while the Age Care sector remains unable to adequately meet the support needs of its established cohort, that the support needs of people with non-age related disabilities who are 65 years+ are best served by the NDIS for the provision of targeted, individualised, disability-specific supports; and

8. reaffirm and ensure that existing NDIS participants retain the ability to be reassessed for NDIS Plan renewal purposes upon obtaining the age of 65 years+ (in recognition of the facts that pre-existing, non-age related disabilities do not diminish with age and may be compounded by the acquisition of additional, age-related disabilities).

My name Is Alisa Coleman. I am a person with a life-long experience of significant disability. I am also a former policy advisor to the NSW Government on disability-specific issues (from 1985-2000, inclusive).

As an NDIS Participant since March 2017, I have benefitted from and continue to benefit from a succession of individualized NDIS Plans that have enabled me to continue to access daily homecare services, fund the purchase of essential continence aids and equipment (including my current motorized wheelchair) and provide me with access to assisted transport and access to allied health professionals where “reasonable and necessary.”

While my interest in this inquiry is predominantly driven by policy considerations, I am becoming increasingly concerned that the planned introduction of independent assessment reforms by mid-2021 is continuing, despite growing opposition from stakeholders - advocacy bodies, consumer organizations, professional associations, parents and people with disabilities.

An absence of any comprehensive consultation processiv and only a limited amount of positive feedback to the NDIA from pilot project participantsv, is also contributing to my unease over proposed reforms.

My detailed reasons for making the above recommendations follow. The commentary will primarily reflect my policy interest in this issue but also, on occasion, my personal interest when, by necessity, the policy and the personal intersect across two (2) areas of the Terms of Reference. They are:

d. the independence, qualifications, training, expertise and quality assurance of assessors; and f. the implications of independent assessments for access to and eligibility for the NDIS.

When on 29 November, 2012, then Prime Minister, the Hon. Julia Gillard, stood to deliver the second reading speech of the NDIS Bill 2012, she began by making three observations that are as relevant today, in 2021, as they were when first spoken almost a decade ago. Ms Gillard said: “> The existence of disability in our community cannot always be avoided…. the consequences of disability—isolation, poverty, loss of dignity, stress, hopelessness

**and fear of the future—can be avoided (and that)….a system that meters out support rationed by arbitrary budget allocations, not real human needs….must be replaced“.

The NDIS became that “real human needs” replacement initiative, following its bipartisan adoption into the legislature in 2013. At the centre of the significant policy shift that the NDIS Act 2013 would come to reflect, was the CRPDvi. Through the combined impact of the International instrument and the Federal Act, the promise of increased independence, participation through respected decision making and greater choice through controlled risk taking by people with disabilities was made tangible.

That tangible reality is now under threat. Many people who look to the NDIS for ongoing essential support are at risk of having their needs trivialized and their supports reduced or withdrawn completely, without access to an easy means of inexpensive and timely appeal or other form of redress.

The independence, qualifications, training, expertise and quality assurance of assessors

As recently as 25 March 2021, Martin Hoffman, CEO, the National Disability Insurance Agency (NDIA), faced a Senate Estimates Committee hearing. At issue was how and why, a company run by Mr. Hoffmans’ predecessor was one of eight companies chosen under an NDIA initiated tender process, to conduct mandatory individual assessments, as a requirement of NDIS participation. While Mr. Hoffman actively disputed any impropriety in the process, the issue of the tender process itself has more broadly raised concerns for me.

How “independent” can an independent assessment be, if the NDIA, as the Agency responsible for the oversight of the NDIS, is also the same Agency responsible for initiating, defining and implementing the tender process that ultimately guides the selection and award of lucrative contracts to companies responsible for determining participant access to the NDIS?

Currently, eight companies, including that which received attention during the Senate Estimates hearing, have been contracted by the NDIA to provide an estimated total of 518,000 independent assessments over 3 years at a combined cost of $319 million. It is reportedvii that the companies will split the fees on an assessment by assessment basis. Meaning, presumably, that the companies will actively compete with each other for business.

In the absence of clarification from within the “Access and Eligibility for Independent Assessments” document, I assume that “independent” within the current context means something similar to that which today, continues to operate between NDIS Participants and “Independent” NDIS Service Providers.

Under current NDIS Participant/NDIS Service Provider arrangements, the NDIA assesses prospective Service Providers for their suitability to provide programs and or services to NDIS participants. Once approved, new independent NDIS Service Providers can incorporate as much or as little of the NDIS ethos, into their company framework, as company management sees fit.

NDIS Individual Service Agreements

NDIS Individual Service Agreements which are subsequently struck between NDIS Participants and NDIS Service Providers, although appearing on an NDIA templated form, do not bind the NDIA or the NDIS Participants/ Service Providers into any kind of enforceable contractual arrangement.

The NDIA is not a party to any Agreement struck on the approved templated form. This means that in the event of a dispute between NDIS Participants and NDIS Service Providers, the NDIA does not intervene to resolve the matter, despite having been the Agency responsible for approving the potentially disputed operations of the Service Provider, in the first instance.

In essence, the lack of involvement by the NDIA in matters pertaining to NDIS Participants and NDIS Service Providers, is being repeated in respect of the Independent Assessment reform proposal. Once contracted, the Assessor companies will operate “independently” of the NDIA. Meaning that it is the NDIA contracted companies that are “independent” not the mandatory testing arrangements.

Specifically, the testing arrangements and the subsequent reports on NDIS Participants will be, as former Minister for the NDIS, Stuart Robert, has recently described, comprised of “impartial data and consistent criteria.” This means that assessments are neither independent nor individualized in any way to meet the specific needs of people required to undergo assessments.

As for NDIS Participants, the operational “independence” of the companies conducting the assessments is of no direct value or material benefit to them. The NDIA will not be overseeing any part of the day to day conduct of the participant assessment process or be ensuring that the assessments are conducted in a sensitive or appropriate manner. Disputes between assessors and NDIS participants, will not be dealt with by the NDIA. Assessment participants will have no right of appeal.

As to the main assessment tool itself, it is completely inappropriate, if as reported,viii there is to remain, post the pilot process, a reliance on a “yes”/“no” questionnaire format, as the basis for assessments. Such questionnaires cannot adequately assess the complexities of many disabilities or the functional capacities of the people being assessed.

As a simple case on point, if I were asked, as the user of a motorized wheelchair who has lived independently in her own home for the past 25 years.… Have you had difficulty staying by yourself over a period of days? I could answer the question in either of two ways. Both answers are equally valid, in the context of my present life experience. I could say… No, as I receive twice daily assistance from an NDIS funded homecare Service Provider. Alternatively, I could say… Yes, if homecare support is temporarily unavailable to me, or if my funded support by a homecare Service Provider is permanently withdrawn.

The point that I am attempting to make above, is that my answers to the question are qualified. A simple “yes” or a “no” answer is insufficient. Pilot project participants, were not given adequate opportunity to qualify their answers at assessment.

Further Considerations Regarding Participant Experience

Furthermore, I am in the fortunate position of being able to comprehend the questions that I am asked. I can formulate a response and can articulate it. Many NDIS participants may not be as fortunate as I am when it comes to answering questions. Further, answering the questions of strangers in unfamiliar environments without the presence of known people for support, will be a potentially intimidating situation for some people undergoing assessment.

Intimidation, or perhaps the fear of reprisal may also account for the poor response rate of pilot project participants to the NDIA’s request for feedback on their experiences.

As recently as October 2020, it was reportedix that only 145 out of a total of 512 (approx. 28%) of first round pilot project participants had chosen to share their experiences, in feedback to the NDIA. Most of the reported feedback received (approx. 90%), was positive.

The two questions that arise for me from the data are…..why did 72% of pilot project participants elect not to elaborate on their experiences? What would they have reported if they had chosen to speak? While the answers to these questions are unknown, the fact remains that the consultation process that has been conducted to date in relation to the Independent Assessment proposal, could at best be described as inadequate.

In addition to the poor response rate of pilot project participants, the period allocated for community consultation on the proposed reforms was too brief. Just 3 months from November 2020 to February 2021 inclusivex (and encompassed the Christmas/New Year period in a year that had featured the COVID pandemic, lockdowns and border closures.

The Implications of Independent Assessments for Access to and Eligibility for the NDIS.

In this section of my submission, I intend to confine my comments to one specific issue. Continued access to NDIS programs and supports by people who attain the age of 65 years, during the life of an existing NDIS Plan.

My interest in this issue is a personal one. I am currently 61 years of age and am beginning to contemplate what a future life as an older person with significant disabilities might look like for me, if ongoing access to the NDIS is withdrawn, in a few years from now.

To date, I have not had any success in having my concerns addressed. I have read the “Access and Eligibility for Independent Assessments” document from cover to cover, and remain uncertain about just how or where aging NDIS Participants fit into the proposed reforms.

I have completed a short, emailed submission on the issue to the NDIA, without receiving any response to date. I have written to local politicians and consulted with community organisations. In February 2021, I attended a TED talk hosted by Zali Steggall, MP, at which Dr Sam Bennett, from the NDIA, spoke.

Still, I await answers to important questions including… how will people like myself, who have a life-long experience of significant disability, ensure that their “reasonable and necessary” support needs continue and are adequately maintained, if not with the NDIS? Will the proposed Independent Assessment reforms, actively operate to exclude current NDIS Participants who attain 65 years+ from being able to re-apply for NDIS Plan assessment?

How will the struggling Age Care sector cope if required to accommodate an additional cohort of people with non-age related, pre-existing disabilities given the recent findings of the Royal Commission into Aged Care Quality and Safety? The Commission found that the current Aged Care System is failing older Australians… is “a national disgrace” for its inability to deliver quality care…is “unkind” and in all too many instances, “simply neglects” people.

In addition to Age Care Sector concerns, pre-existing, non-aged related disabilities will not disappear or diminish with age. Life (and indeed, workforce life) does not stop at age 65, nor are people with long term, pre-existing disabilities immune from the risks of additionally acquiring the disabilities associated with the aging process.

If the NDIA intends to use the independent assessment process as a means of excluding existing NDIS participants from long-term access to the NDIS because of age, what collaborative, consultative working arrangements will be established between the NDIA and the Aged Care Sector to ensure that people required to make the transition from one sector to the other will be assisted to do so in a timely, seamless and adequate manner.

While the questions raised above remain unanswered, the implications for independent assessments on access to and eligibility of the NDIS, for people aged 65+ will potentially be profound. At a minimum, the quality of life for the particular cohort will be placed at risk. In a worst case scenario, lives may be jeopardized for lack of access to quality, individualized programs, services and supports.

All too often, when Governments decide to prioritize expenditure, it is the needs of people with disabilities that are amongst the first to be impacted by change. The NDIS was intended by the former Gillard Government to put a degree of certainty and some stability into the lives of people with disabilities.

So, I will close my submission by returning to the observations of former Prime Minister, Julia Gillard, concerning the avoidance of the consequences that she associated with having disabilities - isolation, poverty, loss of dignity, stress, hopelessness and fear of the future. Nearly a decade after the introduction of the NDIS Bill 2012, the consequences of having disabilities largely remain to be overcome.

Change is required. Change can be beneficial. Change should be embraced but no change about us should be undertaken without us.

ENDNOTES

i Convention on the Rights of Persons with Disabilities ii Former Minister for the NDIS, Stuart Robert referred to the Independent Assessments as comprising “impartial data and consistent criteria”, when interviewed, AAP & SBS - “Senators Question Integrity of Pilot for Controversial NDIS Independent Assessment reforms”, 29/10/2020 iii AAP & SBS “Stuart Robert hits back after disability advocates sound alarm over NDIS speculation”, 27/3/21 iv See note ii above v Ibid vi See note i above vii All facts relating to my comments regarding Mr. Hoffmans’ appearance before Senate Estimates and the tender process itself are drawn from the article, AAP & SBS – “Senators Question Awarding of NDIS Contract as Controversial Independent Assessment Reforms Loom,” 26/3/2021 viii AAP & SBS “Stuart Robert says there are no plans to halt NDIS reforms , as more groups voice concern”, 11/3/21 ix See note ii above. x AAP & SBS report – “25 Disability Groups sign joint Statement calling for rebuild of Controversial NDIS Reforms,” 2/3/21

AUTHORSHIP AND CONTACT DETAILS

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Submission by: Alisa Coleman LLB (Hons);LLM (Hons)

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