Response to Joint Standing Committee on the NDIS Inquiry on Scheme Forecasting and Implementation

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Response to Joint Standing Committee on the

NDIS Inquiry on Scheme Forecasting and

Implementation

Joint Standing Committee on the National Disability Insurance Scheme

PO Box 6100

Parliament House

Canberra ACT 2600

Email: ndis.sen@aph.gov.au

Author: Jackson Reynolds-Ryan, National Policy Officer

jackson.reynolds-ryan@bca.org.au

10th March 2022

Contents

Response to Joint Standing Committee on the NDIS Inquiry on Scheme Forecasting and

Implementation………………………………………………………………………………………………………………………1

Contents ……………………………………………………………………………………………………………………………2

  1. Introduction…………………………………………………………………………………………………………………….3
1.1 About Blind Citizens Australia (BCA) ........................................................................................3
1.2 About people who are blind or vision impaired .........................................................................3

2. Blind Citizens Australia’s submission …………………………………………………………………………………3

  1. Submission context………………………………………………………………………………………………………….4

  2. Submission …………………………………………………………………………………………………………………….4

The Impact of boundaries of NDIS and non-NDIS service provision on the demand for NDIS

funding ............................................................................................................................................5

The interfaces of NDIS service provision with other non-NDIS services provided by the States,

 Territories and the Commonwealth.................................................................................................6

 Variations in plan funding between NDIS participants with similar need ........................................7

Ongoing measures to reform the scheme.....................................................................................10

5. Summary of Recommendations ………………………………………………………………………………………11

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  1. Introduction

1.1 About Blind Citizens Australia (BCA)

Blind Citizens Australia (BCA) is the national representative organisation of Australians who are blind

or vision impaired. Our mission is to inform, connect and empower Australians who are blind, or

vision impaired and the broader community. We provide peer support and individual advocacy to

people who are blind, or vision impaired across Australia. Through our campaign work, we address

systemic barriers limiting the full and equal participation of people who are blind or vision impaired.

Through our policy work, we provide advice to government and the community on issues of

importance to people who are blind or vision impaired. As a consumer-based organisation, our work

is directly informed by lived experience of blindness and vision impairment. Our members, our

directors and most staff are blind or vision impaired.

1.2 About people who are blind or vision impaired

There are currently more than 453,000 people who are blind or vision impaired in Australia1 with

estimates that this will rise to 564,000 by 2030.2 According to Vision Initiative, around 80% of vision

loss in Australia is caused by conditions that become more common as people age.3

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 citizens – including those who

are blind or vision impaired.

  1. Blind Citizens Australia’s submission

Blind Citizens Australia (BCA) would like to make a submission to the Joint Standing Committee’s

Inquiry into Scheme Forecasting and Implementation. Our response is based on consultations with

our members, previous and current submissions, and advocacy work in the sector.

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  1. Submission context

This submission is based on existing legislation and frameworks, noting gaps in the fulfilment of

requirements laid out in existing documentation. The pertinent acts and legislation are:

  1. The Disability Discrimination Act 1992 (Cth) (Austl.)

  2. National Disability Insurance Scheme 2013 (Cth) (Austl.)

  3. United Nations Convention on the Rights of Persons with Disabilities (CRPD) 2006

  4. The National Disability Strategy 2010-2020 (this strategy coordinates the implementation of the

UNCRPD)
  1. The National Disability Agreement 2008

  2. Exposure Drafts of the National Disability Insurance Scheme Amendment (Participant Service

 Guarantee and Other Amendments) Bill 2021.
  1. Consultation Papers by the National Disability Insurance Agency (NDIA) on reforms to Home
 and Living, and Supported Decision Making.
  1. Submission

Blind Citizens Australia (BCA) welcomes the opportunity to provide a response to the General Issues

Inquiry by the Joint Standing Committee for the NDIS (the Committee). The last 2 years have been a

time of change for both our society, and for the NDIS. In this time a range of legislative changes have

been proposed as well as a range of policy adjustments by the Agency, clearly encapsulated in the

twin ‘Home and Living’ and ‘Supported Decision Making’ consultations.

As we have noted in our submission to the ‘General Issues’ Inquiry conducted by this Committee, we

are encouraged by the fact that the latest round of proposed legislative changes have seen the plan

for independent assessments (or ‘robo-planning’) taken off the table, and the amendment to Section

34 relating to the language of ‘reasonable and necessary’ in terms of supports and services dropped.

We have also welcomed the proposed changes outlined in the recent NDIA consultations in relation

to putting home at the centre of planning discussions, and to increase the knowledge and skills of

planners and LAC partners.

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Whilst BCA has made submissions directly relating to these changes and consultations, we note that

these are all likely to have a strong impact on the general implementation of the Scheme and should

be subject to oversight from the Committee; therefore, in this submission we address the impact of

some of the proposed legislative and policy changes, as well as identifying areas where we believe

the opportunity for change has not been taken.

We would also like to note that it is important to always remember that people with disability are not a

collective bloc, and diversity and cultural differences exist even within different disabilities. BCA would

like to remind the Committee that co-design processes with stakeholders representing the full

diversity of disability, as well as people with disability who identify as LGBTIQA+, First Nations

people, or culturally and linguistically diverse (CALD), must be used during all consultation for future

changes to the Scheme. Similarly, the NDIA should embrace user testing throughout any change to

processes – before, during, after – to help understand what might need to be adjusted over time.

The Impact of boundaries of NDIS and non-NDIS service provision on

                the demand for NDIS funding

While the transition to the NDIS, and the person-centred care it provides, has in many cases been a

vast improvement in the quality of services and supports, BCA is aware that many people with

disability, particularly those who also have mental health or other cognitive impairments, view it with

suspicion and in some cases fear.

As an example, BCA is currently advocating for a member who in addition to being totally blind,

experiences significant (though unspecified) mental health challenges. Up until recently this member

has received some in-home care and community access supports through her Local Council;

however the council is now saying that they believe she is eligible for the NDIS and as a result they

can no longer provide supports, as to continue would risk illegality. This member has a visceral

reaction to even the mention of the NDIS and refuses to engage in any way. We have been working

with her service provider redacted to prevent the Local Council from withdrawing those

supports, as we genuinely believe that to do so would cause a significant deterioration of her mental

health, to the extent she may need to be hospitalised. We therefore encourage the government to

look at ways that people with disability can be provided appropriate supports in the rare

circumstances that they do not wish to join the Scheme.

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Recommendation

  1. Ensure non-NDIS disability supports can continue to be provided for individuals who cannot

engage with the Scheme, in cases where their mental and physical health is at risk.

The interfaces of NDIS service provision with other non-NDIS services

provided by the States, Territories and the Commonwealth

BCA remains concerned about the ongoing disparity between the services that can be accessed via

the NDIS, compared with those available through the aged care system. According to Vision Initiative,

around 80% of vision loss in Australia is caused by conditions that become more common as people

age. This includes conditions such as: age-related macular degeneration, cataract, diabetic

retinopathy, glaucoma and uncorrected refractive error4.

It is further estimated that at the age of 75 and over, at least 96% will have a vision impairment. This

means that vision impairment will become the most prominent health issue within the population of

older people5.

Yet despite the significant overlap between disability – and in particular vision loss – and aging,

access to appropriate assistive technology can be particularly problematic for people with disability

who are excluded from the NDIS on the basis of their age. Many people who are blind or vision

impaired access aged care have a specific need for obtaining assistive technology to enable them to

meet their own living needs. These needs exist for all people with vision loss however for an

individual with acquired vision loss, these assistive technology needs may be amplified whilst they

adapt to their new living circumstances through needing assessment, training and purchase of new

equipment. The type of assistive technology or equipment needed may include screen reading

software, magnifiers, barcode scanners, talking microwaves or scales, navigation equipment, white

canes, dog guides and many other types of technology. For individuals who are aged 65 or over

though, the support is currently spread across departments at both state and federal level. Funding

for technology within Aged Care will only be supported if the technology relates to ageing instead of

disability. Complicating matters, state-based support may not be accessed if a person is applying for

or accessing a Commonwealth Aged Care funding package6.

The provision of appropriate aids, equipment and services will ultimately promote independence for

older Australians and allow them to live safely in their homes for longer. BCA believes all people with

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disability, regardless of age, should have equitable access to assistive technology supports,

irrespective of whether that support is provided through the NDIS or the aged care system.

We note that these concerns have been reflected in the recommendations of the Aged Care royal

Commission, which stated that people with disability should receive, through the aged care program,

daily living supports and outcomes (including aids and equipment), equivalent to those that would be

available under the NDIS to those aged under 65 with substantially similar conditions.

We urgently encourage the Federal Government work to implement this recommendation by

committing to a national assistive technology program to support people with disability who cannot

access the NDIS.

Recommendation

  1. Establish a National Assistive Technology Program which would alleviate the current situation of

funding being distributed across multiple state and federal programs. This would provide better

cost-benefit data for the provision of Assistive Technology to older Australians.

Variations in plan funding between NDIS participants with similar need

In the course of our advocacy work, BCA regularly supports members who have experienced

problems in accessing the Scheme, including cases where individuals have been denied access to

the Scheme initially due to not having a ‘diagnosis’ of legal blindness; as well as issues with

accessing appropriate supports once in the Scheme, such as when participants are given approval

for Assistive Technology (AT) that are not preferred by the participant, and which are more costly. We

have also dealt with advocacy cases where we have noticed substantial differences in the quantum of

supports and hours funded, even where two participants may have very similar needs. These

outcomes seem to be at the mercy of individual planners at the Agency or LAC partners having a

clear understanding of the functional impact of blindness and vision impairment.

In our response to the NDIA Consultation Paper on Home and Living, we supported the proposal to

establish professional development and ongoing education and training around home and living

supports for all planners, LACs and other Partners. We made the argument that this training is

absolutely necessary, but that it must include specific education about the support needs of blind and

vision impaired participants, including training on the diversity of vision loss. Such specialist training

on the causes, varieties, and impacts of vision loss will help ensure planners and LAC partners have

a greater understanding on the needs and supports for people who are blind or vision impaired.

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We have also heard feedback from members who have had planners who, despite receiving

recommendations from an assistive technology specialist, approved other equipment due for cost

reasons, and did not adequately listen to or understand the specific benefits of the recommended

product. We encourage the NDIA to establish an online base training module for planners, and we

would encourage planners to be required to attend an NDIA approved assistive technology event

every two years to maintain their knowledge of new assistive technologies to improve participant

outcomes.

We are also concerned by the way planners and other decision makers in the Scheme misunderstand

the important role that orientation and mobility (O&M) supports play for people who are blind or vision

impaired. In many cases the people making these decisions have been trained in administration, not

in the allied health fields, and may miss some nuances that would be picked up if they understood

more about vision loss. In recent months BCA has provided advocacy support for several NDIS

participants who have been negatively impacted by this lack of awareness and training. In one

example an individual was denied funding for support worker hours because she had funding for a

dog guide in her plan – which fundamentally misses the point that people who are blind or vision

impaired use a mixture of mobility aids including dog guides, white canes and sighted guides

depending on the environment they are in. A dog guide can provide important assistance, for

example during the process of crossing a busy road. They do this by identifying pram ramps for safe

crossing instead of gutters, locating audio visual indicator buttons to press to cross, and finally, by

crossing a road when it is clear. They are trained in a manner of avoiding obstacles that a sighted

guide who has not had formal training will not. However, at times dog guides can become

overwhelmed with crowded and hectic new environments reducing their confidence resulting in them

freezing due to the shift in guide conditions. In these situations a sighted guide is needed to assist the

person who is blind or vision impaired to navigate the unfamiliar environment safely and confidently.

The Terms of Reference for this Consultation refers to possible measures that could be used to

address any inequitable variation in plan funding. We note that despite NDIA’s policy and guidelines

on providing communications and plans in a person’s preferred formats7, based on feedback we

receive from our members, there are still significant inconsistencies and shortcomings in the process

and outcomes. Part of ensuring participants can make decisions for themselves is the importance of

being able to independently access information – especially sensitive content relating to a person’s

NDIS plan and related supports – without requiring someone else to read it.

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The NDIA must ensure all communication and information to participants is in an accessible format,

and in the preferred format of a participant e.g., large print hard copy, braille, electronic or audio. This

includes all information provided ahead of meeting regarding reports and evidence that might be

needed, as well as the post-meeting communication and draft plan. The Agency (and its partners)

must also provide clear information on when specialist advice will help ensure participants get the

technical supports most suited to their needs, with adequate time to do so. This in direct accordance

with the United Nations Convention on the Rights of People with Disabilities (UNCRPD), Article 21 –

‘Freedom of expression and opinion, and access to information’, which outlines the importance of

providing information in “accessible formats and technologies appropriate to different kinds of

disabilities in a timely manner and without additional cost”, as well as “facilitating the use of sign

languages, braille, augmentative and alterative communication, and all other accessible means,

modes and formats of communication of their choice by persons with disabilities in official

interactions”8. Further, providing consistently accessible formats for information will support the

outcomes from the NDIS Participant Service Charter, which states that the NDIA, “will make it easy to

access information and be supported by the NDIS to lead your life”9.

Recommendations

  1. Ensure the new training and ongoing education for NDIS staff and partners includes content

specifically relating to the needs of people who are blind or vision impaired. This should be

developed using co-design processes.

  1. Establish an online base training module for planners, and we would encourage planners to be

required to attend an NDIA approved assistive technology event every two years to maintain their

knowledge of new assistive technologies to improve participant outcomes

  1. Commit to ensuring that if training for an item of AT is recommended by a specialist, this should

be included as a fixed item in the participant’s budget alongside the item itself.

  1. Ensure all communication and information to participants is in an accessible format, and in the

preferred format of a participant e.g., large print hard copy, braille, electronic or audio. This

includes all information provided ahead of meeting regarding reports and evidence that might be

needed, as well as the post-meeting communication and draft plan.

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Ongoing measures to reform the scheme

We have welcomed a renewed focus on ensuring participants have flexibility in the way they use their

plans, and to change them when necessary. Full plan utilisation will only occur when participants

have the confidence that their plans adequately reflect their life, circumstances, and needs. In order

for this to occur, we believe assessments of functional capacity should take place in unfamiliar

environments, as well as in familiar ones. This is especially important for people who are blind or

vision impaired, due to the different techniques or skills that may be applied in unfamiliar settings.

In feedback from members, we have been told “[there are] days where my vision is good in the

morning, [but] bad at night”; it is therefore important that planners have the knowledge and skills to

understand the need for flexibility in plans.

We also believe support coordination should be routinely offered as a fixed item in the first plan of all

participants who are blind or vision impaired. This will help build plan utilisation by helping to ensure

participants are able to make appropriate decisions early on about their support needs. It would also

help reduce thin markets and the risk of market failure, which is not insignificant for smaller, more

specialised areas such as blindness and vision impairment, often leading to low levels of full plan

utilisation. It has been recognised by both the NDIA and other stakeholders in the sector that Support

coordination could help address these challenges to ensure the scheme is equitable and usable for

people who are blind or vision impaired10.

Similarly, we would also welcome an annual assessment by a specialist in assistive technology, as

well as in O&M as a fixed item in plans for people who are blind or vision impaired, regardless of plan

length.

Finally, BCA would like to highlight the importance of appropriately funded disability advocacy

services. Access to advocacy, self-advocacy and self-determination supports, including mechanisms

to self-represent to government, are enshrined in the United Nations Convention on the Rights of

Persons with Disabilities. Advocacy services support people with disability to exercise their rights and

freedoms by the provision of individual advocacy support; enabling people to advocate for

themselves; and influencing long-term, systemic change. Yet despite the widely accepted importance

of disability advocacy in protecting and promoting the rights and safety of people with disability,

it remains chronically under-funded.

The introduction of the NDIS has only increased demand for advocacy support, while people attempt

to navigate this new complex and confusing system; but many disability advocacy organisations have

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been relying on short term funding increases and extensions. Supporting people with disability to self-

advocate is a crucial way to build independence and confidence, and ensuring a provision of funding

to enable a participant to build the necessary skills to be able to advocate for themselves across all

decision-making spaces will help develop their sense of empowerment over their own lives.

Recommendations

  1. Include support coordination as a fixed item in the first plan of all participants who are blind or

vision impaired.

  1. Provide the option for an annual assessment by a specialist in assistive technology, as well as in

orientation and mobility as a fixed item in plans for people who are blind or vision impaired.

  1. Summary of Recommendations

BCA strongly recommends the following actions:

  1. Ensure non-NDIS disability supports can continue to be provided for individuals who cannot

engage with the Scheme, in cases where their mental and physical health is at risk.

  1. Establish a National Assistive Technology Program which would alleviate the current situation of

funding being distributed across multiple state and federal programs. This would provide better

cost-benefit data for the provision of Assistive Technology to older Australians.

  1. Ensure the new training and ongoing education for NDIS staff and partners includes content

specifically relating to the needs of people who are blind or vision impaired. This should be

developed using co-design processes.

  1. Establish an online base training module for planners, and we would encourage planners to be

required to attend an NDIA approved assistive technology event every two years to maintain their

knowledge of new assistive technologies to improve participant outcomes

  1. Commit to ensuring that if training for an item of AT is recommended by a specialist, this should

be included as a fixed item in the participant’s budget alongside the item itself.

  1. Ensure all communication and information to participants is in an accessible format, and in the

preferred format of a participant e.g., large print hard copy, braille, electronic or audio. This

includes all information provided ahead of meeting regarding reports and evidence that might be

needed, as well as the post-meeting communication and draft plan.

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  1. Include support coordination as a fixed item in the first plan of all participants who are blind or

    vision impaired.

    1. Provide the option for an annual assessment by a specialist in assistive technology, as well as in

    orientation and mobility as a fixed item in plans for people who are blind or vision impaired.

1 Vision 2020. State of eye health in Australia. http://www.vision2020australia.org.au/our-

work/avoidable-blindness-and-vision-loss

2 Australian Network on Disability. Disability statistics. https://www.and.org.au/pages/disability-

statistics.html

3 Vision2020. Eye health in Australia. http://www.visioninitiative.org.au/common-eye-conditions/eye-

health-in-australia

4 Vision2020. Eye health in Australia. Retrieved from http://www.visioninitiative.org.au/common-eye-

conditions/eye-health-in-australia

5 Commonwealth of Australia. (2005). National framework for action to promote eye health and

prevent avoidable blindness and vision loss. Retrieved from

https://www1.health.gov.au/internet/main/publishing.nsf/Content/eyehealth-pubs-frame

6 National Aged Care Alliance (2016). Improving the interface between the aged care and disability

sectors. Retrieved from https://naca.asn.au/wp-content/uploads/2018/11/Improving-the-Interface-

Between-the-Aged-Care-and-Disability-Sectors.pdf

7 NDIS. Creating Your Plan. https://www.ndis.gov.au/participants/creating-your-plan/receiving-your-

approved-plan/your-plan-other-formats

8 United Nations. Convention on the Rights of Persons with Disabilities – Article 21.

https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-

disabilities/article-21-freedom-of-expression-and-opinion-and-access-to-information.html

9 NDIS. Participant Service Charter, https://www.ndis.gov.au/media/2622/download?attachment

10 Vision2020. Submission on Planning Policy for Personalised Budgets and Plan Flexibility.

https://www.vision2020australia.org.au/resources/submission-to-the-ndia-planning-policy-for-

personalised-budgets-and-plan-flexibility/ .

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