Submission to the Joint
Standing Committee on the
NDIS
**National body working in partnership to prevent avoidable blindness and improve vision care
Introduction
The introduction of the NDIS has improved the lives of many Australians living with disability. Vision 2020 Australia’s members strongly support the scheme’s priorities of providing choice and control and have seen it deliver both for some Australians who are blind or have low vision. Our sector remains committed to the aspirations of the NDIS and its potentially transformative impact for people living with blindness, low vision or other disabilities. But people who are blind or have low vision have faced difficulty in accessing appropriate support from the scheme since it was introduced. The difficulties encountered are attributable to a lack of knowledge among policymakers and program planners about lived experiences of persons with disability, and of the specialised supports that facilitate independence and participation in society. This has a particularly detrimental impact on children, who miss out on key early intervention supports because of inconsistent or inadequate planning. Aboriginal and Torres Strait Islander Peoples face additional barriers to access due to a lack of capacity within the Agency and contracted service providers to deliver culturally safe interactions and communication. To address these problems, and as first steps to address some of the key capacity gaps that make it difficult for people who are blind or have low vision to access support from the scheme, we have asked the NDIA to: - Introduce a special access pathway for young children under 7 with sight loss, similar to that which has already been introduced for children with hearing loss. - Introduce “reference packages” or guides for early childhood planners to ensure children under 7 receive key early intervention supports. - Update the disability snapshot for blindness and low vision to include explanations of key specialist vision supports, in order to better inform planning decisions. - Introduce a panel of specialists in blindness and vision loss to conduct internal reviews of planning decisions. While Agency leadership has been receptive to the ideas we’ve raised, implementing reform remains a slow process. We anticipate that bringing these issues to the Committee’s attention will
- raise awareness of the importance of considering consumer expectations when designing systems, especially those of low prevalence cohorts like blindness and low vision,
- Embed systems change informed by lived experience of consumers and end users
- and further elicit a commitment to co-design and a change in Agency culture.
Blindness, Vision Loss and the NDIA
The majority of people with severe or complete sight loss are over the age of 65, and thus ineligible for the NDIS. The impact of vision loss is often compounded by concurrent carer responsibilities, dual sensory loss, presence of other co-morbidities, chronic disease or frailty, which increase the risk of injury and falls. People who are blind or have low vision are a comparatively low prevalence cohort within the scheme. According to the quarterly report in Ministers for the period ending 30 September 2022, around 2 per cent of participants reported blindness or low vision as their primary disability. Just under 4 per cent of participants reported vision loss as a secondary disability.
The Low Prevalence of Our Cohort Compared to Other Disabilities
The low prevalence of our cohort compared to other disabilities means that statistically, the majority of people have never spent a significant period of time with a person who is blind or has low vision. As a result, the general community, the disability sector, and even the Agency has lacked awareness about the supports that would afford participants choice and control.
Aboriginal and Torres Strait Islander Peoples Experience Blindness and Vision Loss at Higher Rates
Aboriginal and Torres Strait Islander Peoples experience blindness and vision loss at 3 times the rates of other Australians. While this submission won’t address these issues in detail, we echo the comments of our member organisations, also offering input to this inquiry, in saying that the lack of cultural safety of the NDIS is creating profound difficulty for First Nations Peoples with vision loss seeking scheme access.
Planners Are Unfamiliar With Vision Supports
While people who are blind or have low vision do access traditional disability support, and allied health services like occupational therapy, there is potentially benefit to be had from capacity-building training including through ‘non-traditional’ services and supports such as:
- Orientation and mobility specialists who offer strategies for safely navigating the community through use of white canes, GPS and sonar technology, or smartphone apps
- Guide Dog Mobility Instructors (GDMIs) who provide training and support in use of an assistance animal
- Optometrists and orthoptists who provide recommendations on maximising functional vision to achieve personal goals. This may include prescribing customised supports of optical and non-optical low vision aids
- Specialist vision educators who provide early intervention for young children and relevant training for their families
- Assistive technology specialists whose recommendations about suitable products are informed by individual preferences and the environments within which they function. These specialists also provide ongoing training and support in the use of technology following delivery.
Prior to scheme rollout, Vision 2020 Australia and our members raised concerns about planners’ understanding of these services and their benefits. Nearly a decade on, inconsistent planning remains the most significant barrier for people who are blind or have low vision seeking support through the NDIS.
The number of disputes around planning has increased over time. In recent years, people more frequently find it necessary to seek resolution through the Administrative Appeals Tribunal (AAT). This process is costly, stressful, and often presents significant accessibility challenges, since it may require a large amount of information to be converted into alternative formats.
A few specific planning decisions that lead to disputes include:
- Supports being denied on the basis that they duplicate the function of other services. A key example is that of a participant being refused a dog guide on the basis that support work performs the same function, or vice versa.
- Supports denied on the basis that they do not present value for money. For example, we’ve recently heard reports of people who lose vision later in life being denied access to
Braille education because text-to-speech software allows a person to read more cheaply,
even though Braille is invaluable in many instances, even as simple as independently using
an elevator or choosing the right bathroom.
- Similarly, orientation and mobility services are sometimes denied on the basis that a disability support work is cheaper and can perform the same function. Decisions like this reflect an insufficient understanding of the benefits and limitations of specialised and customised vision supports, and the way people who are blind or have low vision make use of a mix of services to maintain and improve their independence. Another concern is that NDIS participants who are blind or have low vision consistently miss out on access to key supports because the planner is not aware of them. Further compounding this lack of awareness, many specialist vision supports do not appear in the NDIS price guide, and therefore have historically been funded under a category called “other therapy supports”. In such instances, funding for sufficient specialist vision support may be approved only if applicants explain in detail the purpose and value of that support. This creates an unfair disadvantage for people who are new to the blindness and low vision sector, or who aren’t skilled in communication and advocacy.
Children Are Missing Out As a result of inconsistent planning, children often miss out on vital, evidence-based early intervention. Our sector has developed a series of specialised supports and assessments which can profoundly impact the development of a child who is blind or has low vision even from infancy. These supports also help families, who are usually unfamiliar with the options available, to adapt their home environment, adopt strategies and develop skills to better support their child. The eligibility criteria currently in effect further compound the issue and can result in children who have vision loss being refused access to the scheme. Sometimes exclusion based on eligibility criteria occurs because it is possible to detect vision loss very early, but the cause of that vision loss is more difficult to establish. in the absence of a diagnosis included on one of the scheme’s access lists, children are only able to access the scheme if developmental delay can be demonstrated. This is ironic given that the aim should be to prevent developmental delay, rather than delay care until a diagnosis is reached or developmental delay is manifested. The Agency has introduced an Early Connections stream, which is designed to address developmental concern when a child doesn’t meet the access criteria. Theoretically, children with abnormal vision might access early intervention supports via this approach, but in practice, it appears that largely when a child is denied access, Early Connections is used to assist in gathering further evidence for a new access request, but not delivering the necessary supports. The Agency view is that scheme access shouldn’t be the only way to get support. But families, who are seeking support while learning to understand the impact of their child’s vision loss, often see NDIS access as the only way their child can be helped. In that context, an access denial can cause extreme distress. Whether children get support via full scheme access or the Early Connections stream is ultimately a matter of semantics for policy makers. But for families, it feels like their child’s future is in the balance. In order to minimise the complexity and difficulty they face, we believe the eligibility criteria, pathway and messaging for children under 6 with vision loss seeking scheme access must be simple.
Proposed Pathway for Children with Sight Loss
The Agency has already introduced an alternate access pathway for children with hearing loss. We propose a similar solution to facilitate early intervention for children with sight loss. In our proposed pathway: - A child with sight loss would be allowed access to the scheme to facilitate ongoing assessment and supervision by relevant specialists based on a paediatrician’s or ophthalmologists’ report of abnormal vision development - The aim would be to address developmental concern and prevent development delay - A child might exit the scheme if, following diagnosis or treatment, severity of vision loss does not meet eligibility criteria.
We want to equip planners with knowledge In 2019, the NDIA collaborated with the disability sector to create a series of “disability snapshots” to help planners better understand specific cohorts. These snapshots focused largely on education around communication and interaction. Anecdotal evidence suggests planners frequently use these snapshots, and that they have made planning conversations feel safer in some ways for people who are blind or have low vision. We believe one simple way of improving planning consistency for people with severe or complete sight loss would be to update the disability snapshot for blindness and low vision to include explanations of key vision supports. This might further diminish the pressure participants face in planning conversations, where they often need to explain the purpose of a support as well as justifying why it is reasonable and necessary. The introduction of reference packages, or guides, to assist planners to provide key supports for children under 7 in their first plans is recommended to capitalise on opportunities for early intervention. While this more prescriptive approach is currently infrequently used, we believe it may be the quickest and most effective solution to ensure children with sight loss won’t miss out on vital supports and services.
Reviews of Decisions Should Be Informed by Experts We support the Minister’s efforts to curb the rising trend of AAT cases, and the intention to pilot an alternative dispute resolution approach, as announced in the most recent federal budget. It currently is unclear how this pilot will impact the concurrent review process. If the Agency retains the responsibility for conducting internal reviews, they must become more effective. Based on the number of cases reaching the AAT, and the justifications offered for decisions, it is very clear that internal reviews are frequently conducted by people with limited knowledge of blindness and low vision. Agency staff members given the responsibility to review decisions should be able to demonstrate a strong understanding of the subject matter, user experience and supports being discussed. Therefore, we have recommended the NDIA immediately increase its capability to make informed decisions, by employing a panel of consumers with lived experience and specialists in blindness and low vision to conduct internal reviews where blindness or low vision is listed as either primary or secondary disability on a person’s plan.
Page Text Start
The Agency Should Value our Expertise
It is evident that over time, key NDIA staff have become more aware of the needs of our cohort. This awareness has translated into action: for example, the original online portal which allowed participants to manage their own plans was very difficult to use with screen reading software. Anecdotally, we’ve heard that accessibility for people who are blind or have low vision wasn’t considered during the development of that portal. The recently launched My NDIS smartphone app, which fulfils a similar purpose, was built with accessibility in mind, and extensively piloted with a variety of users before it was made publicly available. Agency employees with lived experience test new features and suggest changes before software updates are released. These examples demonstrate a cultural change at least within some aspects of the Agency. We accept that some issues faced by our cohort accessing the scheme were caused by genuine lack of awareness among decisionmakers. We have positive relationships with many Agency staff, and are encouraged by the recent commitment to co-designing new policies, including the new approach to information gathering for Access and Planning. Unfortunately, we also continue to see instances where lack of consultation creates difficulty for both providers and participants, such as the introduction of Operational Guidelines for Assistance Dogs, which made incorrect assumptions about the working lives of dog guides. This submission is lodged during a transitional period for the NDIA. Vision 2020 Australia is pleased to see the recent appointments of people with lived experience in key leadership positions, and we are optimistic about the impact of that change. By the time the Committee tables its final report on this inquiry, we hope some of that impact may already have been felt. It is frustrating to see planning decisions like those we’ve described in this submission almost a decade into the life of the NDIS. We hope that the Agency’s leaders will prioritise equipping decisionmakers at every level with better knowledge about low prevalence cohorts like ours. We hope also to see applying for the NDIS become less difficult for families of young children, and to see early intervention supports delivered more efficiently. Though we’ve been seeking these outcomes, and highlighting these issues for a long time, we may now be closer than ever to meaningful change. The NDIA’s most celebrated decisions and ideas have been well-informed. The policies and reforms which have received the most criticism and/or led to the most difficulty for participants, have typically been made with minimal input from people with specialist knowledge or specific perspectives. An NDIA that is fully capable of connecting people who are blind or have low vision with the supports we need must foster a culture of listening. It must respect and seek out the wisdom of people who are blind or have low vision, and the organisations that support us. The information we provide should be used to equip Agency staff to deliver on the promise of the NDIS. We believe the NDIS should be equally capable of supporting every participant, no matter their disability. We hope to see a future where low prevalence cohorts like people who are blind or have low vision do not have to be expert advocates in order to remain independent.
No machine-readable text was extracted from this page.
About Vision 2020 Australia
Vision 2020 Australia is the national peak body for the eye health and vision care sector. Working with and representing almost 50 member organisations, we focus on supporting policy and funding changes to prevent avoidable blindness, enhance eye care delivery and better meet the needs of people who are blind or living with low vision.
Our members span a wide range of areas and engage in local and global eye health and vision care, health promotion, low vision support, vision rehabilitation, eye research, professional assistance, and community support. This means that the work we do in developing sector- supported policy and advice brings a diverse range of expertise and perspectives to bear, and that the perspectives and experiences of both service users and service providers are at the heart of our work.
Avoidable blindness and vision loss in Australia, and our region, can be prevented and treated by working in partnership across government, non-government, private and community sectors. People of all ages who are blind or vision impaired will benefit from these partnerships, with improved access to services that support their independence and community participation.
For further information about this submission, please contact Vision 2020 Australia via email, policy@vision2020australia.org.au