Vision Australia’s submission to the

Productivity Commission on NDIS costs

Submitted online: http://www.pc.gov.au/inquiries/current/ndis-costs

Response approved by: Karen Knight General Manager Advocacy and Engagement

Response submitted by: Kate Begley, Policy Advisor

Introduction

Vision Australia is pleased to have the opportunity to provide input to the Productivity Commission’s review of the National Disability Insurance Scheme (NDIS) costs.

Vision Australia was a registered NDIS provider in the initial trial sites of Barwon, Hunter and ACT. We continue to provide services in these areas, and our service presence has expanded in line with the rollout in Victoria, New South Wales, and Queensland. We also provide NDIS services in the Western Australian trial sites.

In this submission we explore factors we identify as affecting scheme costs from our experience as a provider. We will address questions in the Productivity Commission’s (PC) issues paper that are relevant to the blindness and low vision community.

When we refer to “participants” in this submission, we are referring to participants who are blind or have low vision.

Productivity Commission Issues Paper — National Disability Insurance Scheme

Why are utilisation rates for plans so low? Are the supports not available for participants to purchase (or are there local or systemic gaps in markets)? Do participants not require all the support in their plans? Are they having difficulty implementing their plans? Are there other reasons for the low utilisation rates?

There are various factors contributing to why utilisation rates for plans are low, including:

• Participants may not understand what their plans mean and so don’t know how to implement them, or ask for the best supports. While support coordinators are available to assist with

making the most of plans, not all participants are allocated a support coordinator. Participants may only access a support coordinator in part or occasionally, and may not access their entire package because they do not know how to.

• Due to accessibility issues, some participants who are blind or have low vision have difficulty in accessing the content of their plan, and in finding and locating services via the NDIS portal.
• People who receive larger packages may not need to use the entire package and providers won’t want to over service customers just to use up the remaining package.
• Participants often feel that they have no option but to build contingency items into their packages. Contingency items might then not be utilised. Participants include contingency items because the NDIS has failed to provide effective mechanisms for responding to the real-life circumstances that arise.
• Participants can have unexpected health problems which make them unable to utilise their plans.

Recommendation:

That the PC does not recommend any reduction in funding allocated to participant plans due to low utilisation rates, as this will have detrimental effects on participants who are blind or have low vision.

Why are more participants entering the scheme from the trial sites than expected?

Why are lower than expected participants exiting the scheme?

We believe that the initial number of participants estimated to enter the scheme was too low, this is likely to be because the Government only counted people who were already using government- funded programs as the estimate. They did not include potential participants accessing disability services in the not-for-profit sector, most of which is funded through philanthropy and fundraising.

There are higher than expected numbers of children, and families with young children, entering the scheme.

In our experience as service providers to people who are blind or have low vision, participants from our constituency stay in the scheme because they need the support and do not want to exit the scheme and find themselves locked out, or missing out on vital supports (such as those for transport), which may no longer be available through mainstream services or subsidies.

Recommendation:

That the PC acknowledges the increased participant numbers in trial sites is a sign of past low estimates, and reflects the desire of participants for increased choice and control offered under the NDIS.

What factors are contributing to increasing package costs?

People who are blind or have low vision may not be able to identify their needs accurately because of the difficulty in predicting levels of service usage. As LACs and other support services gain a better understanding of the supports participants need, plans are likely to better reflect these needs — potentially increasing package costs. Our experience has shown wide variations in packages, dependant on the region and the time period plans were designed.

Page I 2 Vision Australia response to PC Inquiry into NDIS Costs — March 2017

We have found that the variation in packages in has stabilised in the Barwon region in the previous six months, allowing participants to make clearer decisions on their support needs. However, the planning process is not always transparent, and we find that some regions assess participants with broadly similar needs and conditions in different ways. Planner knowledge and experience would seem to play a part in this, and we have concerns around the future direction of the Scheme in this space as rollout gathers momentum.

Recommendation:

That NDIA planners should receive additional information about disability cohorts, particularly blindness and low vision, and sharing knowledge across NDIS sites should be improved to stabilise the variation in package size.

Why is there a mismatch between benchmark package costs and actual package costs?

There is a mismatch between benchmark package costs and actual package costs because there is not always an understanding of participant needs which means packages do not always meet benchmark package costs.

Are there other aspects of the eligibility criteria of the NDIS that are affecting participation in the scheme (to a greater or lesser extent than what was expected)? If so, what changes could be made to improve the eligibility criteria?

The eligibility criteria for people who are blind or have low vision is generally straightforward. We do not see many rejections for this reason.

To what extent is the speed of the NDIS rollout affecting eligibility assessment processes?

The speed of the NDIS rollout has changed over time. In 2016 the assessment process was very slow. Participant intake has increased rapidly as the NDIA attempts to meet new targets.

The speed at which applicants are being processed is problematic. We have heard instances of where applicants were contacted over the phone, with no prior notice, and were asked to go through their assessment process on the spot. We are also aware of at least one instance where two NDIS representatives arrived unannounced on a client’s doorstep hoping to conduct an on- the-spot assessment, even after the client had previously indicated in writing to the Local Area Coordinator that they had not yet finalised their goals and identified the supports they would need in order to achieve them. With no advance warning of the planning meeting and the fact that the meeting happens over the phone rather than face to face has resulted in applicants being incorrectly assessed.

Recommendation:

Face to face planning meetings that are arranged in advance so that participants have a chance to prepare and have a better chance of receiving the funding that they are eligible for.

Early Childhood Early Intervention (ECEI) Approach

In response to the higher than expected number of children participating in the NDIS under early intervention requirements, the NDIA has developed the ECEI approach.

Is the ECEI approach an effective way to ensure that those children with the highest need enter into the NDIS, while still providing appropriate information and referral services to families with children who have lesser needs?

Page 13 Vision Australia response to PC Inquiry into NDIS Costs — March 2017

What impact will the ECEI approach have on the number of children entering the scheme and the long-term costs of the NDIS?

Vision Australia is broadly supportive of the ECEI approach, as it reflects best practice in supporting infants, children and their families. There should be a strong emphasis on the inclusion of specialist service providers, and we have some concerns that the Access Partners may not adequately account for this. However, this is not something we are seeing as a major concern at present, but rather an issue to be cautious of in the future.

The ECEI approach is most effective when used with full support coordination from a Primary Service Provider (Key Worker). However this is at present not adequately funded as a line item in NDIS packages. In line with Early Childhood Intervention Australia, Vision Australia recommends that the support coordination role should be funded at the level of specialist therapy, to reflect the specialised nature of these supports and the importance of their role.

Are there other early intervention programs that could reduce long-term scheme costs while still meeting the needs of participants?

Is the current split between the services agreed to be provided by the NDIS and those provided by mainstream sell/ices efficient and sufficiently clear? If not, how can arrangements be improved?

The split between mainstream and NDIS funding is not always clear or sufficient. The NDIS will not fund anything related to education and this can cause problems for students. When a state or territory education authority funds a specialist product for people who are blind, such as an electronic braille notetaking device the individual school owns that equipment and the student is not necessarily able to take it home and use it to study.

A student also cannot take education funded equipment with them when they change from primary to high school, or change primary schools. If an electronic braille notetaking device were funded through NDIS, the item would belong to the individual and so they could take it with them as they progress through the education system.

The principle that “the support follows the student” is consistent with the person-centred foundation of the NDIS, and must be implemented in order to reduce the disadvantage that students who are blind or have low vision currently experience when accessing education supports.

There are also frequent occasions where students require supports that the education system will not fund. Students who are blind or have low vision require an Environmental Assessment, done by an Orientation and Mobility Specialist (O&M), before they start at a new school. An O&M assessment of a school environment generally takes an hour and to write the Environmental Assessment Report specific to the school and the student, takes a further two hours. An O&M fee is $175.00 per hour and they must bill for travel time also. In order to ensure the best outcome for the student and in the absence of funding through the education system for the O&M Environmental Assessment, Vision Australia bares the not inconsiderable cost of providing this service. Once the rollout of the NDIS is complete and Vision Australia no longer receives any block funding, we will no longer be able to provide unfunded services to the education system, even though they are essential to ensure equity for students who are blind or have low vision.

Is there any evidence of cost-shifting, duplication of services or service gaps between the NDIS and mainstream services or scope creep in relation to services provided within the NDIS? If so, how should these be resolved?

Page 14 Vision Australia response to PC Inquiry into NDIS Costs — March 2017

We have identified that there are service gaps between the NDIS and mainstream services and they are primarily within education. There are funding gaps within schools, around transcription of Current curricular materials into braille for use by students who are blind for example. We find that it is difficult to get Transcription services funded through education funding.

How has the interface between the ND1S and mainstream services been working? Can the way the NDIS interacts with mainstream services be improved?

The interface between the NDIS and mainstream services needs improvement. Many mainstream services are under informed about the NDIS. Ideally, mainstream providers should give their customers advice about the NDIS, however we are seeing that they often don’t because they have such a limited understanding of the scheme. Organisations working outside the disability sector appear to know very little about the NDIS, and frequently have gaps in their understanding of disability.

Is the range and type of services proposed to be funded under the ILC program consistent with the goals of the program and the NDIS more generally?

The original proposal by the Productivity Commission for Tier 2 services was comprehensive, and offered a meaningful level of supports for people not eligible for the full NDIS. The current ILC program fails to meet this standard, and leaves major gaps in service delivery. One of the key intentions of the original proposal was to address the problem of ‘thin markets’ — remote, rural and regional areas, and in particular specialist services. Blindness and low vision is a low incidence disability, making delivery of services in remote and regional areas difficult and in some instances unviable.

The ILC Activity Areas in the current format are manifestly inadequate to meet these needs, and represent a failure of support that many organisations will struggle to address without undue financial burdens. The range and type of services proposed are relevant to the NDIS goals, yet the substantial gaps they leave will result in poor or inadequate service delivery and supports for many people with disability.

Information access is of crucial need, and present withdrawal of block funding is occurring in an environment that doesn’t offer appropriate replacements or supports. This includes conversion of materials into accessible formats, including braille, audio, large print, and e-texts. This must also be expanded to reflect emerging service gaps. This is provided to NDIS participants, and equally to non-participants, over 65s, and government departments. To support these activities in a sustainable manner, block funding should be retained, especially as this is considered a ‘thin market’ service which is not a sustainable service without ongoing and consistent supports. The levels of block funding has not increased in over a decade, and the services are currently being underwritten by philanthropy.

Recommendation:

That the PC acknowledges the substantial gap between the original proposal for Tier 2 and the current ILC, and recommend an expansion of the ILC program to return to the original intention of the PC report. That the ILC program develop an expanded focus on information access and related services, and block funding should be retained in this space.

What, if anything, can be done to ensure the ILC and LAC initiatives remain useful and effective bridging tools between services for people with disability?

Page I 5 Vision Australia response to PC Inquiry into NDIS Costs — March 2017

The ILC initiative must be expanded in order to remain useful and effective as a bridging tool — at present it will not meet the needs of people who are blind or have low vision. Please see the above response in relation to this.

There must be a high standard of disability training for LAC consultants. For example, it is vitally important that the LAC staff know what an Orientation and Mobility specialist is and what am Orthoptist is if they are dealing with a person who is blind or has low vision. Without this knowledge they will not be equipped to process applications correctly which could very easily result in under funding for participants. We recognise the difficulty for LAC consultants in being fully versed in every disability cohort. Additional support to specialist organisations to provide information, awareness, and training to LACs on specialist needs is required.

For instance, Vision Australia is currently conducting outreach with LACs overseeing the new sites in the Central Highlands. We have delivered an information session to consultants on blindness and low vision. However, a more structured approach to this through the ILC program would be welcomed.

Recommendation:

That the ILC program be expanded to include information provision, information access, and training for LACs on specialist disability needs.

Is the way the NDIS refers people who do not qualify for support under the scheme back to mainstream services effective? If not, how can this be improved?

There is an inconsistent approach to how people who do not qualify for support are being dealt with. There must be clear procedures for how to assist people who do not qualify for NDIS support as currently they are not always being referred back to mainstream services, or mainstream services are not equipped to meet their support needs.

Recommendation:

That the ILC program activities related to support for mainstream services are expanded and prioritised.

Is the planning process valid, cost effective, reliable, clear and accessible? If not, how could it be improved?

No, the planning process is not cost effective, reliable, clear and accessible.

There is no consistency as to whether planning meetings are over the phone or face to face. Importantly, the decision as to whether a planning meeting takes place via phone or face-to-face is often not made by the client themselves, but by NDIA staff. Clients often feel powerless to challenge such decisions.

There is also no consistency about if the meetings are held at a specific time, there are many instances in which applicants receive an unannounced call and are led to believe that they are required to create their plan on the spot.

The planning process is not accessible to people who are blind. Our clients who read braille are not supplied NDIS information, application forms, complaints forms or their final plan in braille or in any other accessible format, such as accessible electronic text. Information is also not yet readily available for people who have low vision and who therefore require large print or audio. This

Page I 6 Vision Australia response to PC Inquiry into NDIS Costs — March 2017

means that people who are blind or have low vision cannot independently register themselves with the NDIS or read their own plans.

For many people who are blind, braille represents literacy. The current situation where it varies between difficult and impossible for a participant or potential participant to access information in braille, or an alternate format of their choice, is deplorable. This is in fundamental conflict with the principles of choice and control that underpin the NDIS.

The Council of Australian Governments (COAG) agreement on the ‘Principles to determine the responsibilities of the NDIS and other service systems’, principle 4 states that as there will be variations in non-NDIS funded supports across jurisdictions, the NDIS will need to be flexible and innovative in how they fund or deliver these activities. Our experience is that this is not currently being done in any meaningful way. One of the prime areas of concern are the supports allocated for transport. People who are blind or have low vision rely on state-based taxi subsidy schemes to fund transport needs, often alongside NDIS transport supports. However, each state funds these subsidies at different levels, and some (including Queensland) have changed eligibility conditions to remove this subsidy from NDIS participants. At the same time, we have not seen a major change to the level of supports available for participants, indicating a lack of flexibility within NDIS planning. Should the Productivity Commission require, we can provide additional evidence of this to assist in deliberations.

How should the performance of planners be monitored and evaluated?

A major problem for our clients is that the NDIS complaints form is not accessible to people who are blind or have low vision. The NDIA will not be able to thoroughly monitor planners if disability cohorts are excluded from making complaints.

One way to evaluate the performance of planners is through the complaints system. All participants must have the right to lodge a complaint so the complaints form must be made accessible.

An accessible post-plan survey or follow-up could be a very effective way to evaluate planners also.

Another hurdle to making a complaint is that clients sometimes do not remember the name of the planner they used. To ensure that applicants can make a complaint if they need to all planners must be required to have a braille business card, and that information about planners and the planning process is provided in accessible formats.

Recommendation:

That the NDIA is required to provide all plans, information, and forms in the format of the participants’ choice, including braille, to ensure information is accessible.

Are the criteria for participant supports clear and effective? Is there sufficient guidance for assessors about how these criteria should be applied? Is there any improvements that can be made, including where modifications to plans are required?

Based on our experience, many NDIA planners do not have a nuanced understanding of the needs of people who are blind or have low vision. An improvement to this process would be to allow specialist service providers in the blindness sector to assist in the planning process.

Page I 7 Vision Australia response to PC Inquiry into NDIS Costs — March 2017

Once a plan is developed, there is no ability for NDIA to amend the plan. If the participant needs anything changed, there is no way to edit the document.

The only option for applicants is a full plan review.

Because people who are blind or have low vision are often not provided with their plan in a format they can read, it may take some time before they realise that there are errors in the plan’s content, or that it does not accurately reflect their understanding of what was agreed during the planning meeting. However, it is then too late to seek changes to the plan, and the only option is for the participant to request a full review, which may, in any case, be declined by the NDIA.

Recommendation:

That NDIA planners are provided with additional information on specialist needs for people who are blind or have low vision, and that information relating to the development of a plan and participant’s goals are provided in an accessible format of the participant’s choice.

Are the avenues for resolving disagreements about participant supports appropriate? How could they be improved?

The way in which disagreements about participant supports is resolved is not appropriate. Disagreements are handled through a plan review application process. A plan review can be lengthy and stressful. The process can take a week or two or can be quite a bit slower: we know of one participant who is still waiting for their review to be processed after months. Once the review is processed, the NDIA can choose to decline a review if they decide the individual did not demonstrate sufficient change of circumstances.

A review creates stress for participants because the outcome is uncertain, and so a participant cannot be sure that their supports will continue. This stressful situation is compounded by the almost universal failure of the NDIA to provide information in formats that people who are blind or have low vision can read, including the plans themselves.

How might assistance for informal carers affect the need for formal carers supplied by the NDIS and affect scheme costs?

Providing assistance for informal carers may result in the reduction of choice and control for participants. The complex nature of informal carers, who are often family members, may make it difficult for participants to exit the care if they are not happy with the care being provided. Currently planners assess the informal care provided and build a plan with this in mind. It is very important that informal carers are not pushed beyond their limits as this could lead to the breakdown of vital family relationships.

Recommendation:

Vision Australia believes that the NDIA should not provide assistance to informal carers with the aim of reducing scheme costs.

Are prices set by the NDIA at an efficient level? How ready is the disability sector for market prices?

Some prices set by the NDIA are at an efficient level, and some are not. Vision Australia is a large organisation with significant overheads which means not all prices balance at this stage of the rollout. Personal care supports and recreation supports in particular are graded at too low a level.

If levels for those supports remain at their current level it is likely to result in a reduction of service quality as providers attempt to cover costs by employing less qualified, cheaper staff.

How well-equipped are NDIS-eligible individuals (and their families and carers) to understand and interact with the scheme, negotiate plans, and find and negotiate supports with providers?

NDIS-eligible individuals are not sufficiently well-equipped to negotiate plans and providers. For example, the process continues to be fluid. This contributes to confusion about the scheme for eligible individuals. This confusion has been exacerbated by the failure of the NDIA to provide critical information in formats that are accessible to people who are blind or have low vision. The delay in delivering the ILC program and grants has meant participants or potential participants have been disadvantaged in being unable to access information as was originally intended.

People who already have regular service providers will have a better chance of finding out information about how to apply for a package and then how to utilise that package. People who do not currently use a provider will be much less likely to know about the scheme; about the application process or even that they may be eligible for the scheme.

The principles of the scheme that relate to person centred practice and informed user choice are relatively new concepts within the health and disability sector. The concept of developing a plan based on goals is not necessarily familiar to people who are blind or have low vision that have used services prior to NDIS.

Recommendation:

There should be an NDIS marketing approach that provides information to all disability groups in formats that they can access effectively, and the ILC program should be expanded to address the information and capacity building needs of the community and providers in a meaningful way.

Do existing administrative and governance arrangements affect (or have the potential to affect) the provision of services or scheme costs? What changes, if any, would improve the arrangements?

The regulations that relate to the provision of services and eligibility should take into account existing relationships with service providers as evidence of eligibility. If a potential participant has had Centrelink approval for a severe or profound condition or has been previously accepted by Government or state government services, eligibility should be automatic.

We know from our experience working with clients that the registration process if not accessible, and that this is a deterrent for some people who are blind or have low vision and who conclude that the process is “just too hard”. One’s initial experience of the NDIS seems to depend more on the individual customer service staff member rather than on systemic principles or processes.

Are there appropriate and effective mechanisms for dealing with disputes with the NDIA?

Currently participants are required to go through the full complaints process. The complaints form is not accessible to people who are blind or have low vision which means they cannot lodge a complaint independently.

About Vision Australia

Vision Australia is the largest national provider of services to people who are blind, deafblind, or have low vision in Australia. 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 provider
• 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, of whom 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 14.5% of total staff having vision impairment.

Vision Australia also 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.