Vision Australia submission to:
Joint Standing Committee NDIS
Planning Inquiry
Submitted: 6th September, 2019
Submitted by: Caitlin McMorrow, NDIS Operations Lead, Vision Australia.
Blindness. Low Vision.Opportunity.
Introduction
Vision Australia is pleased to have the opportunity to provide this submission to the NDIS Joint Standing Committee, as part of the planning inquiry announced in August
- NDIS participants continue to experience a number of challenges in navigating the planning process and in many circumstances, this also impacts the ability of providers such as Vision Australia to deliver timely and effective services. This paper outlines some of the key issues relevant to participants who are blind or have low vision as well as some of the resulting impacts on our organisation.
Table of Contents
Introduction……………………………………………………………………………………………………1
Executive Summary …………………………………………………………………………………….2
Recommendations ………………………………………………………………………………………4
Experience and Qualifications of Planners ……………………………………………………..4
Ability of Planners to understand and Address Complex Needs ………………………..7
Participants with Complex Medical Needs …………………………………………………..7
Participants Experiencing Trauma ……………………………………………………………..7
Participant Involvement in the Planning Process……………………………………………..8
Plan Gaps ………………………………………………………………………………………………….8
The Plan Review Process…………………………………………………………………………….9
Introduction of Longer Plans ……………………………………………………………………….10
Adequacy of the Planning Process for Rural and Regional Participants ……………10
Other Matters ……………………………………………………………………………………………11
Plan Implementation Support …………………………………………………………………..11
Conclusion ……………………………………………………………………………………………….12
About Vision Australia………………………………………………………………………………..12
Blindness. Low Vision.Opportunity.
Executive Summary
There is a lack of consistency in plan inclusions for people who are blind or have low vision, often resulting from gaps in knowledge and understanding of specialist vision services by planners and local area coordinators.
For participants with complex needs, a lack of continuity remains throughout the planning process. The interface between the NDIS and healthcare system causes ongoing confusion around funding for participants whose medical and disability needs can often be closely linked, as it does for education and learning needs.
The planning process is not sufficiently flexible to accommodate clients who have acquired their impairment in traumatic situations, and therefore find it stressful to engage with repetitive and deficit focused questions in planning discussions.
Accessible information is not always available, preventing people who are blind or have low vision from participating equally in the planning process. In particular, the inability to engage with dynamic content being presented on screen during planning meetings means that participants often cannot provide feedback during the meeting.
The prevalence of gaps between plans and the frequency of early plan reviews continue to result in significant administrative burden for providers. Considerable time is expended in renegotiating agreements and service bookings and there is often an expectation that providers will continue to deliver service during a plan gap, without any assurance that future funding will be available to cover it.
Costs of travel and lack of transparency around how it is funded in plans make it increasingly difficult for providers to deliver high quality and relevant services to participants in remote and rural areas.
Finally, it is clear that many participants are receiving insufficient support and guidance around the implementation of their plans. Many local area coordinators seem ill equipped or resourced to provide the ten hours of plan implementation support that all participants are entitled to receive. Moreover, many participants who could demonstrably benefit from support coordination are denied access to it. Providers such as Vision Australia are addressing this shortfall through provision of unfunded service, however, this is not sustainable and cannot continue.
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Recommendations
Planners must have clear and consistent regard to expert recommendations that are provided throughout the planning process. Planners should receive specialist awareness training, to improve knowledge gaps around specific disability cohorts. This could be provided by specialist providers across the sector. The planning process should include sufficient flexibility to accommodate participants who experience trauma associated with their impairment, and therefore find it challenging to engage with repetitive questions that require them to relive difficult issues several times throughout the planning meeting. Planners should also be trained to recognise these situations when they occur and deal with them appropriately. It is crucial that consideration be given to accessible information and design in any review of the planning process as a whole, to ensure people with disability are able to participate fully and equally in discussions and decisions about their funding. Clearer and more consistent processes must be implemented to address the issue of plan gaps and to reduce undue stress for participants and administrative burden for providers. The NDIA must provide more extensive guidelines or templates for outcome and progress reports, to enable providers and participants to engage more effectively with the plan review process. Policies and procedures concerning provider travel must accurately reflect the costs of service provision in regional and remote areas. The funding allocated for travel must be transparently identified in plans, while still allowing for flexibility in participant spending. The Agency must also disclose its process for calculating quantum of travel during the planning phase, to ensure this is understood by participants and providers. The current lack of support for participants around understanding and implementing their plans must be addressed. The efficacy and availability of this support from local area coordinators must be re-examined. Criteria for the provision of support coordination should also be reevaluated, as many participants require this but do not currently receive it.
Blindness. Low Vision.Opportunity. Experience and Qualifications of Planners
Vision Australia continues to see a lack of consistency in plan inclusions for participants who are blind or have low vision, that appear to be largely dependent on the individual views and experience of the local area coordinator (LAC) or planning delegate. For example, we find that some participants will receive several hours of therapy services, even if they do not need or request these. There is often an automatic assumption that vision impaired people require therapeutic supports and moreover, that these will meet most of their needs. Conversely, there have been several instances where clients who do require extensive therapeutic support have been denied it. This tends to occur because:
The planner views the level of support being requested as unreasonable and does not have a realistic understanding of the hours of service required to achieve the participant’s goals; The planner has limited understanding of specialised vision services such as orientation and mobility or assistive technology support and is hence unable to comprehend how they will assist the participant to achieve their goals; It is assumed that a support worker can provide the same level of service as a therapist, resulting in a lower level of funding being included, or a failure to include funding under the correct support budget in the plan; or The planner assumes that service providers such as Vision Australia are in a position to provide some or all of their therapy services for free, thus making appropriate NDIS funding unnecessary.
Both participants and providers also report that there is frequently a general lack of knowledge around basic aspects of vision impairment. Examples of how this manifests in planning discussions include:
participants with prosthetic eyes being requested to provide information about their visual acuity; Lack of understanding about the ways in which people who are blind or have low vision safely navigate the community. For instance, changes in day and night vision can significantly change the strategies a person uses to travel at different times of day. This misunderstanding frequently results in inadequate transport funding being included in plans; Failure to understand challenges with household tasks that commonly arise for vision impaired participants, such as inability to see stains and marks while cleaning; Failure to understand early literacy needs for participants in the ECEI pathway; Lack of understanding about the assistance provided to a vision impaired person by a dog guide. For example, a dog guide can assist a person to
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navigate the community but cannot teach them a new travel route. Similarly, a dog guide might assist a person to traverse a supermarket, but will be unable to help them choose the items they want to buy from the shelves. This sometimes results in other supports, such as those for community access, being drastically reduced where dog guide funding is included in a plan; Absence of knowledge around commonly used items of assistive technology, such as Braille devices and text-to-speech software.
Vision Australia recognises that planners cannot be expected to have extensive knowledge of every disability cohort they may encounter. Where that knowledge does not exist however, it is important that planners have appropriate regard to expert advice that is provided through assessments, and take the participant’s own account of their needs into consideration. Evidence thus far indicates this does not always occur, resulting in poor and inadequate funding outcomes. Additionally, specialist providers such as Vision Australia could offer awareness training to planners around common aspects of blindness and low vision, to aid in addressing current knowledge gaps.
Case Study
A Participant receiving services from two vision specific providers in Queensland who owns and uses a Dog Guide. The participant required funding for their Dog Guide supports (capacity building), and also accessed a range of community access and recreation services (core supports). They went for their planning meeting with a Senior Planner. This resulted in an ultimatum: “taking Dog Guide support into consideration if you want to go ahead that will impact your core funding. Core funding will be around $11,000 less as your funded support will decrease with the help from Dog Guide.”
That interaction was a confronting one for the participant. At one point they perceived that the Planner was saying that the Agency would take their Dog Guide away, due to both the bluntness of the conversation and the content.
This took months to resolve, and led to delays in the participant accessing funding. It all stemmed from an inability of the Planner to understand the purpose of a Dog Guide – to support independent navigation of the built environment and improve independence. A Dog Guide does not replace all of a participant’s community access needs, and accounting for this participant’s complex support needs, a high level of core support funding was required to ensure they remained independent, connected to the community, and able to go about their tasks of daily life. A lack of specialist knowledge or detailed knowledge base in the planning teams means these cases are all too common.
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The opposite can also be true. In cases where the planner or Delegate has previous experience in the specialised vision sector, better outcomes can be achieved. Equally, in some cases these experience people appear to apply their own bias to the supports a participant needs, sometimes in contradiction with the participant’s wishes. For instance, one participant who had expressed a need for Orientation and Mobility and no interest in Occupational Therapy, received a large number of hours for Occupational Therapy in their plan, and limited hours for Orientation and Mobility.
Fortunately that funding comes from the same Support Budget so they could use their funds flexibly. Yet the blatant contradiction between the wording in the plan and the participants expressed need is inappropriate, particularly as many people may not fully understand that flexibility can be employed. In this case, the bias may be assumed but appears clear: the Delegate was an Occupational Therapist by training with experience in vision related services.
Ability of Planners to understand and Address
Complex Needs
Participants with Complex Medical Needs
There is considerable work to be done concerning the interface between NDIS and the health system. In particular, it is often unclear as to where funding for equipment and services should sit. For example, several participants who are blind or have low vision are linked to the health system to treat diabetes, however, they also require assistive technology to ensure they are able to monitor and read their blood sugar levels. Participants often receive conflicting information about how this technology can be funded and are left confused and unable to access the equipment they need.
Vision Australia has also encountered participants who, due to unusual health circumstances or living situations, are unable to access appropriate supports to build their independence. For example, we are currently working with a young adult who has been residing in hospital for eleven months. As the participant does not have permanent accommodation, his capacity building funding has not been made available for him to access vision related services, even though there are various options to provide these outside the hospital environment. Several attempts have been made to discuss this with the NDIA to no avail. The participant is consequently being provided with unfunded services by Vision Australia, however, this is limited, unsustainable and cannot meet his needs entirely.
Participants Experiencing Trauma
Vision Australia works with a number of clients who have acquired their vision impairment in traumatic circumstances such as accidents, attacks or difficult medical
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situations. The current NDIS planning process often does not cater well to the needs of these clients because it includes a number of repetitive questions around the participant’s impairment and how it impacts them. This often means that they are forced to relive the same difficult experience several times throughout the planning meeting, particularly if the planner cannot, or does not, rephrase questions to avoid repetition of information. This is exhausting, stressful, and makes it difficult for the participant to engage effectively with the planning process, ultimately meaning they are less likely to achieve a suitable funding outcome. Planners must receive adequate training in how to recognise these situations and handle them sensitively and appropriately.
Participant Involvement in the Planning Process
There continue to be challenges that prevent participants who are blind or have low vision from participating equally in the planning process. This is most commonly due to issues associated with information access. Several participants report that, during their planning discussions, they are directed to refer to content that the planner has entered into the system and displayed on their screen. For participants who are unable to see that content, this significantly effects their ability to review and provide feedback during the planning conversation. The result is that participants may not adequately understand what has been included in their plan until it is finalised and provided to them in an accessible format, in turn frequently resulting in a plan review because needs have not been met. It is crucial that consideration be given to accessible information and design in any review of the planning process as a whole, to ensure people with disability are able to participate fully and equally in discussions and decisions about their funding.
Plan Gaps
The current prevalence of gaps between plans creates significant administrative burden for providers. It is often necessary for staff to spend a substantial amount of time altering service agreement dates, having those documents re-signed, reworking service bookings, and communicating with participants and LACs around plan extensions. Moreover, the current expectation is that providers will continue to provide service to a participant during a plan gap, which will then be billed once the new plan comes into effect. This too has implications. Firstly, providers cannot be guaranteed that funding will be present in the new plan for the ongoing services that they have delivered. Secondly, even where funding is provided in the new plan, there is often a shortfall, due to the need to bill prior service delivery from the amount provided. As a result, the participant must often make do with fewer hours of service than expected in their new plan. Clearer and more consistent processes must be implemented to address the issue of plan gaps and to reduce undue stress for participants and administrative burden for providers.
Blindness. Low Vision.Opportunity.
The Plan Review Process
The plan review process continues to be protracted for many participants, resulting in delays in accessing appropriate funding. For example, Vision Australia recently worked with one client who requested an unscheduled plan review in September 2018 because his needs could not be met with current funding. The review never took place and the plan was not re-examined until its scheduled conclusion in July 2019.
Premature plan reviews also appear to be common, with some people required to complete plan reviews up to four months earlier than scheduled. This places undue pressure on participants, who are often still trying to understand their plan and are fearful that they will not have achieved their goals, or used all of their funding. Additionally, participants are not always well supported to link in with plan managers or support coordinators, meaning that their plan utilisation may be further delayed. Many participants express legitimate concern that they will not receive adequate funding in their next plan if their utilisation rates appear to be poor. If the prevalence of early plan reviews is to continue, participants must have some assurance from their planning delegates that this will not prejudice their potential to access future funding.
We are also aware of situations occurring as recently as early 2019, where participants have completed a conversation with a planner over the phone, without being aware or informed that this constitutes their plan review. This particularly occurs in regional and remote areas and often leads to participants being severely underfunded as a result. This level of communication is not acceptable; participants should always have adequate time to prepare for a plan review, and be provided with guidance about how and when this will occur.
The significant number of plan reviews occurring earlier than anticipated also places pressure on service providers to deliver services more quickly than planned. This is challenging for organisations such as Vision Australia that operate in a thin market environment and are faced with the difficulty of resourcing service delivery to a low incidence cohort over a significant geographic area. Many early plan reviews also seem to occur at very short notice, and this often leaves providers with insufficient time (in some cases less than a week), to complete outcome or progress reports and assist the participant to prepare for the process. The Agency has not yet provided a template for outcome or progress reports which contributes to the delay and burden on participants and providers.
Additionally, service providers are seldom notified that an early plan review has taken place and will generally only become aware of this when we are unable to bill for services because all portal bookings have been ended prematurely. This vastly
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increases the amount of non-billable work that providers are required to do in order to renegotiate service agreements and remedy rejections of payments for services that cannot be claimed.
Introduction of Longer Plans
Vision Australia acknowledges that there are circumstances where the implementation of longer-term plans may be appropriate. It is important, however, to give consideration to whether this is likely to have unforeseen impacts on the participant. For example, Vision Australia recently worked with an adolescent client who received a two-year plan as a result of her last review. During those two years, the participant will be transitioning out of secondary school and is hence likely to experience a number of life changes. It is unlikely that the plan goals which have been set now, or the participants needs, will be the same across the whole of the two-year period. This could present various challenges in terms of service delivery and may mean that an early plan review is required. While we support the introduction of longer-term plans where appropriate, we would question whether these should be considered suitable in situations where the participants needs have the potential to change significantly over the life of the plan.
Adequacy of the Planning Process for Rural and
Regional Participants
Despite the recent increases to travel caps stated in the NDIS Price Guide, providers such as Vision Australia continue to experience difficulty in delivering viable services in regional and remote areas. It is common for a Vision Australia specialist to travel several hours to provide services to a client and the current NDIS travel policy means that the majority of these costs cannot be recouped. For example, Vision Australia provides services to a client in Nanango, in regional Queensland. We have only one client with an NDIS package in this location. It is a 5 hour round trip for therapists to travel to appointments with this client from our nearest office in Maroochydore, however, because of the way in which Nanango is classified under the MMM model, we are only able to bill for 60 minutes of that travel time. There are no other providers in the area so the client is at considerable risk of not receiving services. We have investigated a range of options – from seeking to deliver multiple services per visit, to dual service provision with multiple providers – there is no combination of approaching break even with our costs. The costs of providing services considerably outweigh the expenses we incur in delivering them.
The increased non funded costs of providing services are likely to mean that our service offerings to people in regional and remote areas will be limited or stopped altogether, unless there are substantial changes to the way in which travel is funded.
Blindness. Low Vision.Opportunity.
The funding allocated for travel must also be transparently identified in NDIS plans, whilst still allowing for flexibility in participant spending. At present, there is no mechanism to know how much funding has been allocated in a participant’s plan for provider travel, and no clarity of process in the way in which quantum of travel is calculated during the planning phase. This often leads to difficult negotiations between providers and participants around the division of services and travel funding. Clarity in the value and calculation process for travel at the planning stage would considerably decrease complexity for both participants and providers alike.
Providers are often asked to supply recommendations for inclusion of travel in participant plans, however, there is no consistency in how these recommendations are applied. When providing separate calculations for travel, Vision Australia has been advised by at least one LAC that we should include these recommendations as additional therapy hours tied to participant need, to ensure an appropriate amount is included in the plan. Some local area coordinators have advised participants that the NDIS does not fund provider travel at all, and subsequently failed to include any allowance for this in plans. In addition to this rendering it impossible for providers to deliver viable services, it creates significant confusion for participants, who are often left to wonder whether they will have to pay for this aspect of their service delivery themselves. For participants in remote areas, who rely on providers to travel to their location, this is a significant source of stress and worry.
Other Matters
Plan Implementation Support
As a national service provider, Vision Australia sees a high level of variability in the degree to which LACs and planners proactively support participants to understand the funding in their plan. It is common that participants approach Vision Australia seeking services, but have received little, if any information about the funding available in their plan and the ways in which it can be used. Where it is apparent that local area coordinators are not available or willing to offer this support, it often falls to service providers to assist the participant in utilising their plan and understanding their funding.
Vision Australia works with a number of participants who struggle to manage support budgets and to understand how they can be used, however, we find these clients rarely have support coordination funding included in their plan, even though they would benefit from it greatly. Several participants have been informed by their planners that they categorically do not meet the relevant criteria to qualify for support coordination funding and will never receive it. This seems contrary to the person centred focus of the NDIS, where the situation of each participant is considered individually.
Blindness. Low Vision.Opportunity.
What is clear is that many participants are not receiving appropriate guidance about the funding contained in their plan and how to utilise it and that service providers are expending considerable amounts of unfunded time to address the shortfall. Careful consideration must be given to the level of support that local area coordinators are realistically able to provide. Current NDIS guidance is that participants should receive up to ten hours of support from a LAC, however, this level of plan implementation guidance is commonly unavailable. If this is not sufficient, options to provide support coordination may need to be re-evaluated.
Conclusion
Vision Australia thanks the Joint Standing committee for its consideration of this paper. While the NDIS has undoubtedly resulted in a significant benefit for many participants, there are still several aspects of the planning process that can be improved and streamlined. We wish you well in your deliberations and would be happy to provide further information or discuss these matters at a public hearing.
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
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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.