Participant experience in rural, regional and remote Australia

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Submission to the Inquiry into NDIS

Participant Experience in Rural, Regional

and Remote Australia

Lodged via: https://www.aph.gov.au/Parliamentary_Business/Committees/

Joint/National_Disability_Insurance_Scheme/RuralRegionalandRemote

Author: Dr Corey Crawford, National Policy Officer

corey.crawford@bca.org.au

22nd February 2024

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Introduction……………………………………………………………………………………………..3

1.2 About people who are blind or vision impaired ………………………………………..3

Submission Context …………………………………………………………………………………4
Blind Citizens Australia’s Submission …………………………………………………………5 3.1 NDIS participant experience in rural, regional and remote Australia …………..5

3.2 The need for document accessibility………………………………………………………8

Summary of Recommendations……………………………………………………………….10 Blind Citizens Australia | Page 2 of 11

Introduction

Blind Citizens Australia (BCA) is the peak national representative organisation of and

for the over 500,000 people in Australia who are blind or vision impaired. For nearly

50 years, BCA has built a strong reputation for empowering Australians who are

blind or vision impaired to lead full and active lives and to make meaningful

contributions to our communities.

BCA provides peer support and individual advocacy to people who are blind or vision

impaired across Australia. Through our campaign work, we address systemic

barriers by promoting the full and equal participation in society of people who are

blind or vision impaired. Through our policy work, we provide advice to community

and governments on issues of importance to people who are blind or vision impaired.

As a disability-led organisation, our work is directly informed by lived experience. All

directors are full members of BCA and the majority of our volunteers and staff are

blind or vision impaired. They are of diverse backgrounds and identities.

1.2 About people who are blind or vision impaired

There are currently more than 500,000 people who are blind or vision impaired in

Australia with estimates that this will rise to 564,000 by 2030. According to Vision

Initiative, around 80 per cent of vision loss in Australia is caused by conditions that

become more common as people age.1

Australians who are blind or vision impaired can live rich and active lives and make

meaningful contributions to their communities: working, volunteering, raising families

and engaging in sports and other recreational activities. The extent to which people

can actively and independently participate in community life does, however, rely on

facilities, services and systems that are available to the public being designed in a

way that makes them inclusive of the needs of all – including those who are blind or

vision impaired.

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Submission Context BCA welcomes the opportunity to make a submission to the Joint Standing

Committee on the National Disability Insurance Scheme (NDIS) regarding participant

experience in rural, regional and remote Australia.

Since its initial rollout in 2013, the NDIS has provided life-changing supports for

hundreds of thousands of people with disability aged 65 or younger at the time of

initial participation.

Following a year-long inquiry, the Independent Review into the NDIS (also known as

the NDIS Review) published its Final Report in December 2023. The 338-page

report made 26 recommendations to change the system that supports people with

disability in Australia.2

The report found that 93 per cent of all government spending on disability in

Australia is on the NDIS. This has turned the NDIS into a proverbial ‘oasis in the

desert’ and threatens the Scheme’s long-term viability.3

To rectify this situation, the report outlined the need for a new unified ecosystem of

disability supports. The need for additional supports is felt very keenly by people with

disability in rural, regional and remote Australia.

BCA’s submission is based on the following policy frameworks:

Independent Review into the National Disability Insurance Scheme (NDIS) –

Final Report.

Royal Commission into Violence, Abuse, Neglect and Exploitation of People

with Disability – Final Report.

Australia’s Disability Strategy 2021–2031.

United Nations Convention on the Rights of Persons with Disabilities

(UNCRPD).

In 2023, BCA conducted an extensive series of online and in-person consultations

with members regarding the NDIS Review.4 This submission draws from those

consultations with members, and our ongoing advocacy work in the disability sector.

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Blind Citizens Australia’s Submission 3.1 NDIS participant experience in rural, regional and

remote Australia

Thin markets

Approximately two per cent of NDIS participants are blind or vision impaired.5 This

relatively low incidence amongst NDIS participants creates a thin market for

blindness services across Australia. A thin market is characterised by a low number

of buyers and sellers.

The Department of Social Services has recognised that thin markets result in

‘inadequate service availability’ and NDIS ‘participants’ needs not being met.’6 The

Department has also acknowledged that people living in rural, regional and remote

areas are more likely to experience thin markets.

BCA’s consultations with members confirmed that NDIS participants’ needs were not

being met in major cities.7 One member noted that ‘market decisions can have a big

impact on a low incidence population like blindness.’

For participants in rural, regional and remote areas, there was an even deeper sense

of disappointment and abandonment. BCA members lamented how few skilled or

qualified workers operate in regional areas. Participants get general support workers

who come in and simply do not understand how to help people who are blind or

vision impaired.

The ‘marketplace’ is even thinner for people living in Tasmania, where the entire

state is covered by a single blindness specific provider. This severely limits any real

exercise of ‘choice and control,’ and is especially true for anyone who has an issue

with a dog guide instructor, as there are very limited options.

Transport costs

When discussing how the market for blindness specific support services could be

improved, several BCA members spoke of the need for a higher travel allowance in

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NDIS plans. Some members articulated that reliable transport was more valuable

than a support worker.

A West Australian member spoke of the great expense incurred when making the

10-hour round trip from Geraldton with a support worker, all for an hour-long medical

appointment in Perth. Tasmanian members shared their experiences of flying to

Melbourne to get reports and assessments completed.

Traversing long distances to city-based medical specialists and service providers

comes at a cost that is currently not appropriately accommodated in NDIS plans.

BCA members living in rural, regional and remote areas would greatly appreciate

having their transport allowances increased.

Recommendation:

Increase the transport allowance for NDIS participants in rural, regional and remote areas to accurately reflect the costs incurred.

Local navigation

BCA members felt particularly let down by their local area coordinators (LACs). ‘I

don’t even know what LACs do,’ said one member. ‘LACs have no concept of blind

or vision impaired services,’ added another.

‘There is no knowledge passed between’ the LAC and different workers at the NDIA,

said another member. LAC ‘is an appropriate’ acronym, quipped another member, as

they are ‘often lacking’ in knowledge and skills.

BCA members noted that LACs were originally set up to connect with community

supports in local areas, but they have ended up just being an extension of the

planning process. A point was made about how LACs were, ‘ironically for their

name,’ sometimes based outside of the local area or even interstate.

According to Recommendation 4 of the NDIS Review, the NDIA should ‘be the lead

commissioner of a local navigation function to help people with disability find

supports in their community and make the best use of their funding.’

It is essential that local navigators are actually based in the communities they serve.

If this does not occur, NDIS participants will soon become as frustrated with the local

navigators as they currently are with LACs.

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Recommendation:

Ensure that local navigators are based in the communities they serve. Workforce shortages

Many BCA members felt that the NDIA is unaware of the needs of people who are

blind or vision impaired to have trained workers. Members believed there needs to

be a way of improving outcomes for the support workers to encourage them to work

with people who are blind or vision impaired.

As part of Recommendation 15, the NDIS Review recommends the Commonwealth

‘develop an integrated approach to workforce development for the care and support

sector.’

This sector faces huge challenges, with the Committee for Economic Development

of Australia (CEDA) projecting a shortfall of 110,000 frontline workers in the aged

care system by 2030.8

The Department of Social Services has forecast that up to 292,000 support workers

could leave the disability sector by June 2025. This exodus comes at a time when

the Department believes the disability workforce must grow by 40 per cent, or

128,000 additional workers.9 It will thus be even more difficult to attract and retain

support workers in rural, regional and remote areas.

As BCA wrote in its recent submission on the Aged Care Bill 2023, the

Commonwealth should heed CEDA’s recommendation that reforms in the care and

support sector occur within the context of ‘a broader tax-reform conversation.’10

Recommendation:

Pursue care and support sector reform as part of a broader national tax reform agenda.

Price gouging

BCA members want the NDIS to be successful and sustainable in the long term.

They are therefore frustrated by the apparent price gouging that occurs under the

Scheme.

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BCA members related their experiences of being charged the maximum amount

possible by various allied healthcare professionals, cleaners, gardeners and

tradespeople.

One member likened purchasing NDIS supports and services to planning a wedding:

‘As soon as you reveal what it’s for the price jumps dramatically!’

According to Recommendation 11 of the NDIS Review, ‘pricing and payments

frameworks’ should be reformed ‘to improve incentives for providers to deliver quality

supports to participants.’

Eliminating price gouging to the greatest extent possible should be a key aim of

NDIS pricing and payments reform.

Recommendation:

Prioritise the elimination of price gouging when developing NDIS pricing and payments reforms.

3.2 The need for document accessibility

NDIS participants’ experience of document accessibility

In previous submissions regarding the NDIS and the National Disability Insurance

Agency (NDIA), BCA has emphasised the frequent inaccessibility of official

documents for people who are blind or vision impaired.11

Several BCA members have described the weeks, months and sometimes even

years it takes for their NDIS documents to arrive in an accessible format. The bar is

so low that one member said they were ‘shocked’ when their NDIS documents

arrived in their preferred format.12

In addition to contravening the law, document inaccessibility inflicts trauma and pain

on people who are blind or vision impaired. It also results in costly time delays and

frustration for officials from the NDIA and related Commonwealth agencies.

The inaccessibility of the NDIS Review’s Final Report

Despite BCA’s repeated recommendations for mandatory document accessibility, the

NDIS Review’s Final Report was not presented in an accessible format for screen

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reader users. An accessible version has not been made publicly available in the

subsequent three months.

BCA is aware of at least two members whose capacity to work in disability policy and

advocacy was directly affected by the inaccessibility of the report. BCA has been

informed by one of those members that other people who are blind and vision

impaired and working in the disability sector have been similarly affected.

Thankfully, in the circumstances we are aware of, these individuals’ employers

understood that this situation was out of their control and made appropriate

adjustments to help support their staff. However, this creates additional (and entirely

unnecessary) work in organisations that are already under resourced and stretched

thin by the frenetic pace of reform across multiple areas that impact on people with

disability.

It is a cruel irony that a landmark report into Australia’s system of disability supports,

with an aim to improve the social and economic participation of Australians with

disability, cannot be easily read by the very people it is intended to support –

talented and experienced people with lived experience working within the sector to

advance those same goals. This discrimination cannot continue.

Meeting Disability Royal Commission Recommendation 4.14

The NDIS Review coincided with the conclusion of the Royal Commission into

Violence, Abuse, Neglect and Exploitation of People with Disability (also known as

the Disability Royal Commission or DRC).

DRC Recommendation 4.14 stipulates the Commonwealth’s duty to provide

information ‘in at least two formats accessible to people with disability.’13 BCA

recommends that the Commonwealth provide NDIS materials in the following

accessible formats: audio, large print, e-text and braille.

To meet Recommendation 4.14, BCA reminds the Commonwealth that it is essential

for all government websites – including those pertaining to the NDIS – to conform

with the most recent version of the Web Content Accessibility Guidelines (WCAG),

currently WCAG 2.1.

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Recommendations:

Make all NDIS materials available in audio, large print, e-text and braille formats.
Ensure that all Commonwealth websites – including those pertaining to the NDIS – conform with the most recent version of the Web Content Accessibility

Guidelines (WCAG), currently WCAG 2.1.

Summary of Recommendations When assessing NDIS participant experience in rural, regional and remote Australia,

members of the Joint Standing Committee should consider the following

recommendations:

Increase the transport allowance for NDIS participants in rural, regional and remote areas to accurately reflect the costs incurred.
Ensure that local navigators are based in the communities they serve.
Pursue care and support sector reform as part of a broader national tax reform agenda.
Prioritise the elimination of price gouging when developing NDIS pricing and payments reforms.
Make all NDIS materials available in audio, large print, e-text and braille formats.
Ensure that all Commonwealth websites – including those pertaining to the NDIS – conform with the most recent version of the Web Content Accessibility

Guidelines (WCAG), currently WCAG 2.1.

1 Vision 2020 Australia, “Eye Health in Australia,” accessed 23 November 2023, http://www.visioninitiative.org.au/common-eye-conditions/eye-health-in-australia

2 NDIS Review, “Our Final Report: A Guide for People with Disability and Their Families,” 7 December 2023, https://www.ndisreview.gov.au/sites/default/files/resource/download/ndis-final-report-guide.pdf

3 Bruce Bonyhady, “Everything (and Everyone) With Us,” 19 June 2023, https://www.ndisreview.gov.au/resources/speech/everything-and-everyone-us

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4 Blind Citizens Australia, “Submission to the NDIS Review,” 30 August 2023, https://www.bca.org.au/wp-content/uploads/2023/09/BCA-NDIS-Review-Report-v1.0.docx

5 Vision 2020 Australia, “Access and Eligibility Policy with Independent Assessments:

Submission to the National Disability Insurance Scheme,” February 2021,

https://www.ndis.gov.au/media/4803/download

6 Department of Social Services, “NDIS Thin Markets Project,” 5 April 2019, https://engage.dss.gov.au/ndis-thin-markets-project/

7 Blind Citizens Australia, “Submission to the NDIS Review.”

8 National Seniors Australia, “Staff Shortages Shut Down Aged Care Beds,” 19 October

2023, https://nationalseniors.com.au/news/health/staff-shortages-shut-down-aged-care-beds

9 ABC News, “Support Workers Are in Short Supply. Meet the People Stepping Up to Care

For the Most Vulnerable,” 23 August 2023, https://www.abc.net.au/news/2023-08-23/training-support-workers-mackay/102708090

10 Blind Citizens Australia, “Response to the Aged Care Bill 2023,” 15 February 2024, https://www.bca.org.au/submissions/#2024

11 Blind Citizens Australia, “Response to the Administrative Review Reform Issues Paper,” 1 May 2023, https://www.bca.org.au/wp-content/uploads/2023/05/Response-to-the-Adminstrative-Review-Reform-Issues-Paper.docx

12 Blind Citizens Australia, “Submission to the NDIS Review.”

13 Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, “Final Report,” 29 September 2023, https://disability.royalcommission.gov.au/publications/final-report

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