NDIA Accountability Project

Addressing systemic barriers for culturally and linguistically diverse people with disabilities

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··· · · · · · · SUBMISSION TO THE COMMUNITY AFFAIRS LEGISLATION COMMITTEE INQUIRY · National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No.1) Bill · ·

                                           **Paula Trood**, MAICD, MHSM, GDipHlth&MedLaw         ·
                                      **Lando Antonelli**, BSocWk, BArts(MulticulSt)        ·
  ·--------:      ..     ·              -··

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Executive Summary

About ADEC

Action on Disability within Ethnic Communities (ADEC) Inc. is a for purpose incorporated association created over 40 years ago to advocate for people with disabilities who face the additional challenges of cultural and language barriers. Since 1982, ADEC has been seeking to address systemic, community, and individual barriers to service access and to uphold basic human rights to inclusivity and a just society. Today, ADEC’s expanded programs also provide assistance to the elderly through Commonwealth Aged Care programs, and others who need cultural and language specific supports to effectively engage with the community and social supports through both Advocacy and Capacity Building programs.

SUBMISSION SUMMARY

ADEC is supportive of the Commonwealth Government’s intention to review the function of the NDIS and the objective to address the effectiveness of the Scheme in relation to its cost. ADEC would support any measures to ensure the Scheme is implemented on a fair and equitable basis to the many in Australian society who live with disabilities; however, considers that the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No.1) Bill (‘the Bill’) requires significant revision before progressing.

ADEC is grateful for the opportunity to submit a response to the Bill, which will focus on four interrelated areas in the context of the proposed Bill and associated Explanatory Memorandum. These are:

  • The purposes of the Bill and the lost opportunity to establish a more integrated and “intersectional” NDIS (i.e., the way the NDIS works with other related sectors to deliver better community outcomes) according to the 2023 NDIS Review Report;
  • The concern that the Bill, in expanding the rules relating to access provisions will cause further disintegration of the health and human services system and further detract from a whole of person approach;
  • The concern that the Assessment of Needs amendments in clause 32L, when implemented, will be limited to consideration of NDIS (classified) impairments only, excluding consideration of the individual’s life context such as their CALD background and other barriers and considerations outside of their disability status; and
  • The timeframe and implications of this for the development of the Bill following the NDIS review in the context of the above three points.

Submission

1. PURPOSE OF THE BILL

ADEC commends the intent of the Bill, specifically purpose 5 (“Insert measures focused on protecting participants”) as outlined in the Explanatory Memorandum. However, there is concern that with the apparent primary focus on addressing inefficiencies in the Scheme, there is a significant lost opportunity to create a more integrated NDIS. This includes recommendations from the NDIS Review such as:

  • Establishing foundational supports, including advocacy to access those supports.
  • Improving community access and inclusion, including for those with cultural or language barriers; and
  • Better support for people living with disability outside of the NDIS.

ADEC considers the current “disintegrated” disability system, and the apparent lack of consideration on the intersectionality of the NDIS with other sectors such as Health and Aged Care, as a key factor in the efficiency, quality and safety issues seen within the NDIS, and is unable to ascertain how the Bill, or any future legislative change, proposes to address this. Without consideration of this intersectionality with the other sectors, the proposed amendments, which appear to be more restrictive, are likely to exacerbate this position, as indicated in Case Study 1. In addition, the current fragmented nature of the NDIS is also costly and ineffective; the Bill appears to make no provision for addressing this.

Case Study 1: Intersectionality within the Sectors & Falling Through the Gaps

Sydney, 29 years old diagnosed with Cerebral Palsy in infancy with mild-moderate impairments in relation to upper and lower limb spasticity. However, able to ambulate and undertake most interactions within her community up to the age of 12, although unable to participate in most types of sporting activities. Had major intervention at aged 12 with orthopaedic surgery on all four limbs. Sydney completed a Bachelor of Arts in 2017. At 23, was declined access to the NDIS based on her condition not being ‘significant’. It is not known if Sydney appealed. Sydney was unable to fund sufficient private physiotherapy to maintain her functional state; Medicare funded physiotherapy was accessed. At 28 she was granted access to the NDIS as her condition by then had deteriorated, at which time she was able to resume functional therapy. Sydney’s decline in mobility has nevertheless significantly restricted her life choices. In 2023, she went from living in her own home to living with her parents.

As previously stressed, the siloed approach to service by both State and Commonwealth governments results in failure to wholistically support individual’s needs and arguably creates costly and cumbersome health and human service systems.

The Bill

The Bill, as presented, does not appear to move in a direction which would resolve this.

2. RULES OF ACCESS & WHOLE OF PERSON APPROACH

In general, the Bill and Explanatory Memorandum is scant on information in relation to the ‘expanded rules’ and how the changes to the rules will be affected.

The Bill is not clear on how the “whole of person” (rather than individual supports) objective will be achieved. The definitions of support at amendment 14 (section 10) lack clarity – and appeal to the “rules” which are not explicit, but which nevertheless appear to restrict the classifications for access. ADEC suggests that an individual is not disintegrated into the parts that align with the various health and humans services sector systems’ legislation. ‘Impairments’ as indicated in the Bill are inarguably affected by chronic and acute conditions as well as the individual’s life context such as their CALD background, socioeconomic and educational status, and the ageing process. Considering the defined ‘impairments’ in isolation does not seem to represent a ‘whole of person’ approach.

The narrow focus on NDIS (classified) impairments and the implicit suggestion that the healthcare sector (or aged care sector as seen in Case Study 2) will be addressing impairments or issues outside of this, is likely to results in gaps in support and poor individual outcomes. In addition, measures to address the gaps, often the subject of jurisdictional ‘cost-shifting’, are more costly overall. [Example: State and Commonwealth funding redirected to critically needed appeals and advocacy programs to plug gaps left by the policy and legislative instruments in relation to health, disability, and ageing, and the unaddressed systemic barriers to access.]

Case Study 2: Intersectionality & Whole of Person Approach to Care

Alex, 75 years old, diagnosed with Cerebral Palsy from infancy and wheelchair dependent from childhood. Migrated to Australia in childhood from Italy. Widowed, with three independent children. He advised that his access to supports in childhood was limited due to cultural ‘stigma’, language barriers, and lack of understanding or indeed suspicion of available services. Alex has never accessed the NDIS, in part due to age related ineligibility. Despite his challenges, Alex has been a community volunteer for most of his life. His function has declined as he has aged, and in 2020, Alex accessed the Aged Care system. Under this, Alex has funding to support his personal and domestic care needs, but his disability support needs to facilitate continued volunteer work falls outside of this system. He is ineligible to access any disability funding to provide the assistance and equipment he needs to maintain his presence in his volunteer workplace. Alex is therefore limited in his engagement with his community and meaningful activity, and has identified that he is isolated, which is affecting his mental wellbeing.

3. CHANGES TO ASSESSMENT OF NEEDS

Two concerns arise from the suggested amendments to Section 32L. The first is the lack of clarity in relation to how the assessments will be undertaken, and the arguable conflict of interest should the NDIS be acting as both clinical assessor and gatekeeper of the funds.

The second concern arises from the apparent alignment of the assessment to the NDIS (classified) impairments and the lack of whole of person approach discussed at 2. above. Subsection 32L(8) allows the minister to determine the assessment tools used and the requirement for a person undertaking the assessment to have certain skills or qualifications. The indication in the Explanatory Memorandum is that these will be “highly technical”, thereby limiting the pool of assessors considered able to undertake the task and pointing to the first concern raised above.

Without access to additional information, ADEC is also concerned that subsection 32L(8) may lead to perverse outcomes for people from ethnic backgrounds. Assessment tools focussed too narrowly or developed without consideration of cultural needs, fail to account for the additional requirements of people from CALD backgrounds and are known to result in poorer access to services.

4. TIMEFRAMES FOR DEVELOPMENT OF THE BILL AND ENGAGEMENT WITH THE COMMUNITY

While ADEC acknowledges that sector consultations were undertaken, and the Bill represents “the first in a series of legislative changes…in response to the 2023 Independent Review into the NDIS”, both the initial focus on funding and the lack of consideration of the transformative elements identified above could have adverse impacts on participants and those seeking to access the NDIS. Indeed, the “first” changes will establish the foundations for subsequent changes. ADEC submits that these first funding changes cannot be made in isolation to model changes and as such this Bill represents a missed opportunity.

ADEC would seek further clarity about the potential for the NDIS to make unilateral decisions on critical elements of the NDIS and individual support as suggested in amendments 27, 30, and to some extent, 39 (2E). In addition, there is a lack of clarity about the methods for calculating total funding amounts for ‘reasonable and necessary budgets’, conducting needs assessments for participant supports, and transitioning to ‘new framework plans’. The lack of transparency and inclusive decision-making in these areas could have significant adverse effects on the supports and services participants rely on and create further gaps in care and service.

ADEC is concerned that community consultation in the development of this Bill, especially the likely impacts, was not sufficient. The Explanatory Memoranda indicates a co-design process will be undertaken, but it appears that thus far co- design principles have not been adequately incorporated, which are essential to

ensuring that the perspectives and experiences of people with disabilities and their advocates are integral to any legislative changes affecting their lives.

Additionally, it is concerning that ADEC has identified that people with disabilities from ethnic backgrounds have not been supported to be sufficiently involved in the development of the Bill. This exclusion is particularly troubling given the commitments outlined in the NDIS CALD Strategy 2024-2028, which emphasizes the importance of cultural and linguistic diversity in the NDIS. This strategy aims to ensure that the needs of culturally and linguistically diverse (CALD) communities are considered and respected. The current process appears to have overlooked these principles, risking the alienation and disenfranchisement of CALD participants.

Recommendations

ADEC makes the following recommendation in the context of this submission:

    1. To reconsider the timeliness of the Bill and re-engage with the sector in relation

to facilitating a more transformative change according to the NDIS Review Report and in parallel with, rather than following, funding changes. 2. Before progressing with the Bill, to provide more clarity to the sector about the changes in terms of process for implementation and impacts, including the implications for, for example, CALD communities. 3. To make available all information about the expanded rules and engage the community to explore any implications this has before a Bill is progressed. 4. To be willing to consider the intersectionality of relevant sectors, across both State and Commonwealth jurisdictions, in the development of any Bill intended to “Get the NDIS Back on Track”.

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