Vision Australia submission on:
Joint Standing Committee NDIS General Issues
Submitted: 4th March 2019
Submitted by: Caitlin McMorrow, NDIS Operations Lead, Vision Australia.
Introduction
Vision Australia is pleased to have the opportunity to provide this submission to the NDIS Joint Standing Committee. We especially appreciated the opportunity to appear before the Standing Committee as part of the recent public hearing on assistive technology.
This submission will outline some of the key challenges that people who are blind or have low vision experience when seeking to access supports under the NDIS, as well as some of the complications that specialist providers such as Vision Australia encounter when providing services under the scheme.
Early Intervention supports for People who are blind or have Low Vision There are currently a number of challenges associated with accessing early intervention supports under the NDIS for children who are blind or have low vision and their families. The NDIS Act commits the scheme to providing early intervention supports to participants and states that full consideration should be given to the need to promote the child’s development. Unfortunately, there have been a number of circumstances where this objective has not been realised for children who are blind or have low vision. In several of the regions where we deliver services, Vision Australia has seen a number of children refused entry into the scheme through the current early childhood intervention pathway. While each of these cases has unique characteristics, there are nonetheless a number of common issues that present across the board, including the following:
- The child does not have a stable vision condition, in that while they have been diagnosed, there is still uncertainty, or ongoing change concerning their exact level of vision function.
- The child has not yet evidenced developmental delays against the assessment markers being used to determine eligibility for the scheme.
- The child’s family are told that they can continue to access Vision Australia and community services, and should return to the NDIS in the event that a developmental delay arises.
Vision Australia has grave concerns about these practices, and their potential impacts upon children and families. Section 25 of the NDIS Act indicates that early intervention practices are appropriate in order to alleviate the impact of a child’s impairment on their functional capacity, and in preventing the deterioration of that functional capacity. It therefore seems counterintuitive that families are being requested to wait until their child presents with a developmental delay, before seeking appropriate supports.
This causes undue distress for families: it also increases the burden on providers who are supporting the child to meet outcomes. It may also create the conditions for
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a developmental delay to arise, which is both inexcusable, and entirely contrary to the objectives of the Scheme. These cases also indicate a lack of understanding about how vision impairment manifests for children under the age of seven, as well as its potential impact on their development. In many instances, the child may not have presented with a developmental delay at the time of assessment, due to the ongoing intervention of organisations such as Vision Australia, along with other ECI services.
It is vital that steps are taken to prevent incorrect refusal of access to the scheme and the subsequent detrimental impacts that result for children and families. Participants and their families must have a level of clarity around the evidence of disability that they are expected to provide. It is also crucial that ECI partners improve their understanding of blindness and low vision so that they can effectively support and engage with children in this space.
As a separate matter, Vision Australia also has concerns regarding the way in which the concept of choice and control is applied in relation to ECI cases. The vast majority of children who are blind or have low vision are born to fully sighted parents. As a result, families of children receiving a diagnosis of vision loss often have little, if any, knowledge of what is needed and the supports available to them. This is problematic, because the effective operation of choice and control is dependent on those exercising that choice being fully aware of their various options. There is also a significant risk that developmental outcomes for the child may be compromised if poorly informed decisions are made regarding early intervention therapies.
Vision Australia would be supportive of the introduction of a guided referral pathway, to support parents and families in accessing appropriate ECI services. Frequently, early intervention is time critical for children who are blind or have low vision in order to minimise the risk of ongoing disadvantage. The creation of a guided referral pathway would help to alleviate the delays in accessing services that exist currently. It would also reduce the potentially detrimental impacts for families associated with lack of knowledge or experience around available service options.
Thin Markets and Specialised Services Vision Australia has concerns relating to the current thin market of specialised services and the impact this has on providers of disability specific supports. The viability of continuing to deliver services in this environment must be addressed. Low incidence disability cohorts such as vision impairment are particularly susceptible to the risks of thin markets. Specifically, participants who are in rural or remote areas will struggle to access social and community supports, as well as specialist services. Even where mainstream or alternative services are available, those providers are unlikely to possess the specialist vision impairment knowledge or capability that is often sought and required by participants.
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Provision of services in these areas is equally challenging for providers of disability specific supports, who must often travel long distances to deliver services and bear the costs of doing so. This is particularly the case for people who are blind or have low vision, for whom online and remote service delivery is seldom appropriate to meet client needs. It is often crucial to deliver services such as occupational therapy, physio therapy and orientation and mobility in the person’s natural environment, especially where these services are designed and intended to maximise their participation in mainstream activities such as education, employment or navigating their local community. It is essential that appropriate funding be included in participant plans, to enable these services to be delivered in the location where they are relevant. Requiring providers and participants to draw down on support budgets to cover travel may, in many circumstances, leave inadequate funding remaining for the provision of supports and inhibit people who are blind or have low vision from exercising choice and control in relation to their services.
While the recent development of the NDIS travel policy has allowed providers such as Vision Australia to recoup some of its travel expenses, the reality is that the amounts that can be claimed are often vastly exceeded by the actual costs of delivering services to remote areas. These cost pressures, along with the challenges inherent in recruiting staff with the vision specific expertise that is needed by our client base, mean that it is difficult to justify service delivery to participants in regional and remote areas, particularly when demand in major centres is comparatively high. The current difficulties experienced in delivering services profitably in remote areas, may force providers of specialist services such as Vision Australia to reconsider available levels of service for some clients, a result which would be both undesirable and detrimental to Scheme participants who are blind or have low vision.
Accessible Information
Vision Australia has significant concerns about the ongoing sporadic availability of accessible information from the NDIA, both for Scheme participants and staff employed in this area who are blind or have low vision. Despite indicating its commitment to provide participants with their NDIS plans in accessible format, Vision Australia is still aware of numerous circumstances where the NDIA has provided these documents to people who are blind in hardcopy print, then requiring the participant to request their plan from the agency in a format which they can read independently.
Not only does this cause undue delay and anxiety for participants in accessing and understanding their funding, but it is also poorly aligned to the principles of independence, choice and control that the Scheme purports to facilitate. Access to information on the NDIA website is similarly haphazard, with many reports, information sheets and other resources continuing to be provided in formats that are not accessible to people who are blind or have low vision, who may be reliant on assistive technology such as screen reading or magnification software.
Of particular concern, vision impaired staff who are employed by Vision Australia to assist participants in accessing and managing their funding, are experiencing significant challenges in accessing information through the NDIA provider portal, components of which have become largely inaccessible to those using screen reading technology.
Vision Australia wishes to stress the ongoing importance of consulting with sector experts around the provision of accessible information, as well as the crucial need for inclusive design and accessibility to be considered by the NDIA as it makes ongoing changes to the platforms and tools that are essential for participants, as well as those employed in the sector, to engage effectively with the Scheme.
Issues Surrounding Participant Transport Funding and Withdrawal of Other Core Supports
There continues to be a lack of both consistency and adequacy around provision of participant transport funding in NDIS plans for people who are blind or have low vision. This is of particular concern in states such as Queensland, where participants have only been assured of access to their State taxi transport subsidy until June 2019, when the transition to the NDIS is scheduled to be completed. Point-to-point transport is an important means of transport for people who are blind or have low vision, because it represents the closest equivalent to independent car travel and is often a key factor in maintaining employment, gaining an education and participating in recreational and community activities.
If the current State based transport subsidies are to be subsumed into the NDIS, it is therefore imperative that some consistency be achieved in the application of transport funding in participant plans. For example, Vision Australia is aware of several cases where people who are blind or have low vision that choose to use a dog guide as their mobility aid, have been denied access to personal transport funding as part of their NDIS plan. This indicates a fundamental lack of understanding of the role and purpose of a dog guide. The assumption that a dog guide entirely removes the need to access point-to-point transport, such as taxis, due to the increased independence that it provides, fails to take account of factors such as:
- The inability of public transport services to reach all areas of the community;
- The fact that transport for people with disability is time crucial, as it is for everyone. People who are blind or have low vision need to be able to care for their families, attend their jobs and educational institutions, and the frequency or availability of public transport is not always conducive to this; and
- The fact that there are, and likely always will be, areas and circumstances where it is unsafe or impractical for a person who is blind or has low vision to travel as a pedestrian, even with the assistance of their preferred mobility aid.
There has also been at least one case where a participant’s core supports have been substantially reduced following receipt of a dog guide. The argument provided by the NDIA in this instance was that a dog guide would reduce the need for core supports to access community groups etc., due to the increased independence that it provides. Once again, this represents a fundamental lack of understanding of a dog guide’s role in the life of its handler. While it may improve the person’s ability to navigate their community safely and independently, a dog guide does not replace the social interaction with other human beings that is afforded by participation in community activities. The apparent tension between capital funding for a dog guide, against the ongoing provision of core supports, has the potential to place many people who are blind or have low vision in the untenable position of being forced to make a choice between independent mobility, and the capacity to engage fully in social and civic life.
Payment for services
Administration of funding for participants who are plan managed is particularly haphazard. We have experienced numerous circumstances where participants have agreed to a service and the plan manager has indicated that funding is available, however, they fail to quarantine the relevant amount. In many instances, plan managers may refuse to quarantine the funding. By the time the service has been invoiced, the participant has insufficient funding remaining in their plan to pay for it.
This places service providers at substantial revenue risk. One recent interaction with a plan manager was illustrative of this issue, where we had requested they secure funds for Assistive Technology, and they refused; they requested we speak with the participant, secure the funds, and then invoice them when we had delivered the equipment with no guarantee we would be paid.
This is a fundamental misunderstanding of the role of plan managers, and is all too common, particularly in relation to Assistive Technology. It appears to be a greater problem with smaller plan managers who have taken on more than they have capacity for – there are excellent examples of plan managers who handle participant funding with a high degree of confidence. There appears to be limited oversight or accountability where participant funds are poorly managed.
We have also encountered a number of situations where plan managers have requested assistive technology items to be purchased under consumables, in a way that does not comply with the relevant NDIA guidelines. Vision Australia is concerned that this will place participants at risk of misusing their funding. In short, there appears to be a lack of clarity around the role of the plan manager and the ways in which participants and providers can reasonably expect them to administer NDIS funding.
Conclusion
Vision Australia thanks the Joint Standing Committee for its consideration of this paper. The key theme across all of the issues raised throughout this submission is that there frequently appears to be a lack of understanding of the manifestation and impacts of blindness and low vision across multiple facets of the Scheme. For many of our clients, this results in lack of access to appropriate services and technology, refusal of early intervention supports, inconsistent availability of accessible information and inaccurate assessment of need regarding transport and other core supports. We believe that the NDIS has the potential to enhance quality of life and access to services for many people with disability, however, this aim can only be achieved if Governments, sector organisations and the NDIA work together to strive for continuous improvement and fair and equitable outcomes. We look forward to your response and wish you well in your deliberations. We would be pleased to provide further information in relation to the matters raised.
About Vision Australia
Vision Australia is the largest national provider of services to people who are blind, deafblind, or have low vision. We are formed through the merger of several of Australia’s most respected and experienced blindness and low vision agencies, celebrating our 150th year of operation in 2017.
Our vision is that people who are blind, deafblind, or have low vision will increasingly be able to choose to participate fully in every facet of community life. To help realise this goal, we provide high-quality services to the community of people who are blind, have low vision, are deafblind or have a print disability, and their families.
Vision Australia service delivery areas include:
- Allied Health and Therapy services, and registered provider of specialist supports for the NDIS and My Aged Care
- Aids and Equipment, and Assistive/Adaptive Technology training and support
- Seeing Eye Dogs
- National Library Services
- Early childhood and education services, and Felix Library for 0-7 year olds
- Employment services, including National Disability Employment Services
- Accessible information, and Alternate Format Production
- Vision Australia Radio network, and national partnership with Radio for the Print Handicapped
- Spectacles Program for the NSW Government
- Advocacy and Engagement, working collaboratively with Government, business and the community to eliminate the barriers our clients face in making life choices and fully exercising rights as Australian citizens.
Vision Australia has gained unrivalled knowledge and experience through constant interaction with clients and their families. We provide services to more than 26,000 people each year, and also through the direct involvement of people who are blind or have low vision at all levels of the Organisation. Vision Australia is therefore well placed to provide advice to governments, business and the community on the challenges faced by people who are blind or have low vision fully participating in community life.
We have a vibrant Client Reference Group, with people who are blind or have low vision representing the voice and needs of clients of the Organisation to the Board and Management. Vision Australia is also a significant employer of people who are blind or have low vision, with 15% of total staff having vision impairment.
Vision Australia has a Memorandum of Understanding with, and provides funds to, Blind Citizens Australia (BCA), to strengthen the voice of the blind community. We also operate Memorandums of Understanding with Australian Hearing, and the Aboriginal & Torres Strait Islander Community Health Service.