The Royal

Society for the Blind

21 January 2013

Committee Secretary Senate Standing Committees on Community Affairs PO Box 6100 Parliament House Canberra ACT 2600

Dear Committee Secretary,

RE: Response to the draft National Disability Insurance Scheme Bill 2012

Please find our response to the above attached.

If you have any additional queries regarding this response, please do not hesitate to contact Andrew Daly,

Yours sincerely,

ANDREW DALY Executive Director

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Response to the Exposure Draft, A bill for an Act to establish the National Disability Insurance Scheme (NDIS), and for related purposes (Exposure Draft)

Introduction

In responding to the Exposure Draft, given the Royal Society for the Blind of South Australia (RSB) exists solely to enable people who are blind or vision impaired to attain the quality of life to which they aspire, RSB wiil primarily restrict its comments to the impact a proposed NDIS and the Exposure Draft will have on its clients rather than disability generally.

Whilst the RSB believes reform in the broader disability sector is needed, it does not believe that this should be at the expense of people who are blind or vision impaired.

The structure of this response will be:

• Introduction
• Executive Summary
• The Royal Society for the Blind of South Australia (RSB)
• Unique Needs of people who are blind or vision impaired
• Structure of the NDIS (as proposed)
• Tier System
• Information
• Funding
• Local Area Coordinators
• Discrimination against those acquiring a disability over 65 years of age
• SOP BND aA PP ONS
• Loss of Innovation
• Transitional Arrangements
• Other Areas not considered
• Specific comments on the Exposure Draft Clauses, for which the RSB - seeks clarification or, is providing feedback
• Recommendations

The Royal Blind Society (RSB) Submission

Background Information

The RSB is aware that Vision 2020 Australia (V2020) has prepared a submission, which RSB has viewed a draft, purporting to represent the Blindness and Low Vision Sector.

It is our view, in this instance, this is inaccurate and certainly whilst the RSB is a member of V2020, it does not agree with the views expressed and believes they are contrary to the interests of people who are blind or vision impaired, as demonstrated by the fact that they are supporting an NDIS from which at least 75% of people who are blind or vision impaired are excluded from any funded support.

Executive Summary

The RSB notes and applauds the Government’s attempts to substantially increase funding for disability services generally. However it does not support the concept of investing all “disability resources” into a small number of people who are able to convince a generic assessor that their needs are greater than the person interviewed before and after them.

Indeed, based on the design proposed by the Exposure Draft (if approved), it will not create independence but rather a “race to the bottom” where people will need to exaggerate their disability or fall into crisis in order to reach Tier 3 Individual Service Plans, with the primary response being “personal care”.

People who are blind or vision impaired require specialist assessments and access to specialist rehabilitation services, generally at times of change. Services are:

e Episodic,

e Specialist,

e Most effective when delivered early, and

e Focussed on enablement and independence.

The RSB’s concerns are that for people who are blind or vision impaired their specialist needs will be lost in a “one size fits all’ system that utilises generic assessment tools designed primarily for people with profound intellectual or physical disabilities. As a result, in the absence of specific provisions being made they will be unable to access funded services.

Similarly the specialist knowledge and_ services required to maintain their independence will be lost. Accordingly the RSB believes that Senator McLucas’ undertakings, that all people who are blind or vision impaired will be eligible for funded services, needs to be incorporated in the Exposure Draft through amendment of, to specifically include “people who are blind, vision impaired or deaf/blind as being eligible for funded specialist rehabilitation services’.

Of greatest concern to the RSB is the exclusion of people seeking first service access after the age of 65 years of age.

Currently approximately 75% of the RSB’s clients are over the age of 65 years. Whilst there is a correlation between ageing and vision loss, vision rehabilitation is not an aged care issue but a specialist disability service. The services and outcomes vary little for those acquiring severe vision loss prior to or after the age of 65 years.

Accordingly the RSB believes that people who are blind or vision impaired, irrespective of the date of acquisition for reasons of efficiency, human rights and equity, must be able to access specialist funded rehabilitation services through the NDIS.

Unique Needs of People Who Are Blind or Vision Impaired

The specialist nature of the above services would clearly not be available in a generic disability or aged care system.

The RSB has conducted an independent Client Survey each year for the last 17 years. In 2012 the results were as follows:

Unique Needs of people who are blind or vision impaired

Services for people who are blind or vision impaired differ markedly from that envisaged by the proposed NDIS in that they are designed to enable individuals through specialist training and intervention to undertake tasks independently and not be reliant on personal care supports. Indeed, services can be characterised as being:

• Episodic, normally required at times of change. This support may include:

A replacement cane tip (Cost $5.00), A new plan to access public transport if they change their residential arrangements,

Training in new strategies to clean their house (not have it completed for them) due to a loss of a partner,

Assessment of a new piece of equipment, eg alternative reading strategies if there is a further loss of vision.

• Unique needs and strategies which require both a specialist assessment and specialist service response, to be effective this includes an understanding of the functional impact of the vision loss and knowledge of specialist rehabilitation strategies,

These are most effective when delivered early ie avoiding a crisis occurring, * Focussed on rehabilitation independence and participation through education training employment and social interaction.

RSB’s clients access specialist assessments and services differently from other disability groups in that there is a genuine continuum between the primary medical system and the RSB with practically every person being diagnosed as being or likely to become eligible for RSB services receiving a referral Independent research has demonstrated that 996% of people referred in this manner attend the RSB’s Low Vision Clinic within 12 months.

Accordingly the NDIS with its generic assessments in the instance of RSB clients represents an additional layer of unnecessary bureaucracy and cost plus another ~layer of frustration and delay for the individual Further these generic assessments

• do not address the unique and specialist needs of people who are blind or vision impaired.

Further the NDIS, as proposed, is built around the assumption of ongoing services and interaction with the National Disability Insurance Agency (NDIA). This is contrary to the needs of people who are blind or vision impaired who will require

support at times of change.

RSB’s concern is also that an NDIS, as proposed, will destroy a proven, client focused and efficient sector (as acknowledged by the Productivity Commission) through the imposition of an inappropriate generic model.

The RSB recommends:

Given the unique needs and specialist service responses required for people who are blind or vision impaired and that they will not be identified or addressed in a generic system that the Exposure Draft be amended to recognise the need for specialist assessments and services. Further that specific pathways be created to enable direct access to these and the ability for people who are blind or vision impaired to access these specialist support services at times of change.

Structure of the NDIS (as proposed)

The RSB believes the structure of the NDIS as proposed in the Exposure Draft will be detrimental to people who are blind or vision impaired. Firstly the RSB does not believe based on its reading of either the Exposure Draft or Regulatory impact Statement (RIS), December 2012 that what is being proposed is an insurance scheme at all.

An insurance scheme is based on a premium paid by an individual / entity as part of their risk management to receive an entitlement if certain events were to occur. The NDIS, as proposed, is based on a yearly Government budget, the size of which will be determined by other competing Government priorities. As a result it is financially unsustainable and disability services will remain crisis driven and rationed with increasing eligibility thresholds and waiting lists. In part, this rationing is already forecast through the need for the NDIA to approve what is reasonable and necessary whilst at the same time meeting its requirement to be financially sustainable.

This in particular is of concern given estimates already are that only 10% of people e.g. those with profound physical and intellectual disabilities will access Tier 3 funding (Individual funded service plans (ISP)) refer RIS and below.

The RSB believes that a future NDI needs to be focussed on providing an

entitlement to receive services that enable a person with a disability to achieve their goals and aspirations and not made to fit a generic personal care model.

The Parliamentary Secretary for Disability Services, Senator Jan McLucas at the Australian Blindness Forum meeting held on the 31° of October, 2012 advised that all people who are blind or vision impaired will be eligible for a funded service. This is not reflected in the Exposure Draft which accordingly requires amendment to reflect this undertaking.

The RSB recommends:

• The Exposure Draft be amended to ensure, as per Senator McLucas’ undertaking, that all people who are blind, vision impaired or deaf/blind will be eligible for a funded specialist disability service.

These services are most effective when accessed early and we are pleased to note that after many representations early intervention is included in the Exposure Draft.

Further, the NDIS as being proposed, is not a model driven by individual’s with a Disability but rather a centralised government model built on a generic assessment and service base, the Exposure Draft specifies that any benefit will only be with the approval of the Agencies’ CEO (or their delegate) with all power resting with the NDIA.

Similar experiences in Germany, for instance, of a market driven system for the provision of Guide Dog services, whilst creating a larger number of providers, evolved a system where the service was based solely on price with a resultant loss of innovation and quality.

Tier System

The Exposure Draft is silent on the Tier system proposed by both the Productivity Commission and the RIS which appears to confirm that this is how a future NDI will operate. If the Tier system is the tool in conjunction with “reasonable and necessary” supports by which the NDIA will restrict access to funded packages then the RSB believes that it should be reflected in the Exposure Draft, if not the RIS consultation is flaved and should not be used as the basis for creating and justifying a poor system.

The RSB recommends:

If the Tier System is an embedded element within an NDIS then it should be reflected in the Exposure Draft. If not the RIS needs to be amended and a further consultation conducted on the regulatory impact, in the absence of which the RIS (a requirement for major policy change) is meaningless.

Given the inclusion of the Tier system in the RIS, RSB feels it is appropriate to formally record in this submission the fact that this Tier system is poorly structured to identify the specialist needs and deliver the specialist response required to optimise the quality of life for people who are blind or vision impaired.

• Tier 1: The Productivity Commission noted this as being promoting opportunities for people with disabilities and community awareness, whilst the RSB agrees that this is vital to changing community perceptions, it has not featured in the RIS. In the Exposure Draft it is included at Part 3 (a) and (b) but does not prioritise this but rather includes it as a general function. As noted above in the crisis driven and rationed system proposed this will clearly be one of the first casualties as a financially unsustainable scheme struggles to meet a budget.

• Tier 2: Will be imposed on the majority of people with disabilities if able to pass a generic assessment will be consigned. The NDIA’s response to a Tier 2 client will be referral to a generic or community based service without funding and appropriate supports, this is likely to be disastrous and effectively create further isolation. For example, one instance that the RSB is aware of involves the referral of two people with severe intellectual disabilities to a mainstream recreation and leisure group, without any supports being provided to the facilitator or the individuals. The result was that, even with the best of intentions, neither the group members nor the facilitator could manage and as a result the group folded quickly.

• Tier 3: Is a funded ISP, this will only be allocated based on the person convincing a generic assessor using a generic assessment tool that their needs are effectively more critical than the previous or subsequent person seeking a generic assessment.

Generic assessments are built around intellectual and physical disabilities, generally assessing in a number of domains for instance toileting and eating, behaviour, comprehension, communication and daily living. These domains are then aggregated and a priority given based on these criteria. For people who are blind or vision impaired their needs and the functional impact of their vision loss normally do not create ongoing issues with the majority of these domains. Their needs will normally be overcome through a specialist assessment, specialist rehabilitation and the provision of specialist equipment and training.

Accordingly based on the NDIS being proposed it is very unlikely that people who are blind or vision impaired will be eligible for Tier 3 funding until such time as they are in crisis with a very real concern that the only response from an NDIS will be generic personal care services. There are many examples of assessment tools that discriminate against people who are blind or vision impaired by not identifying their specialist needs and prioritising access to appropriate services for instance the former Work Assessability Tables (WAT) and locally created DStart.

During a visit to Glasgow a number of years ago and investigations into the United Kingdom (UK) ISP system, from which much of the NDIS is based. The RSB was advised by one specialist provider that they were not aware of any person who is blind or vision impaired that achieved an ISP as a result of their vision loss. This is due to both the generic nature of the assessment, resultant priority rating and the rationed nature of the funds available. Indeed Dr. Simon Duffy, The Centre for Welfare Reform noted in one of his papers that local Government in the UK were now seeking to reduce their disability costs by over 30% creating an even worse rationed situation than as noted above. An assessment by Dr. Duffy of the proposed NDIS can be found at:

htto:/www.centreforwelfarereform.org/library/authors/simon-duffy/fears-for-ndis.htm|

When the RSB appeared before the Productivity Commission, the Commissioner present acknowledged the quality of RSB services and advised that the aim of the Productivity Commission’s inquiry is to bring other disability services up to the level of those offered by the RSB. As noted the RSB believes that rather a crisis driven, rated system will be created that will ignore the potential and specialist needs of people who are blind or vision impaired and only provide generic assessments and personal care responses rather than optimising independence through specialist services.

For instance, a request for assistance in reading personal mail will be met with a generic assessment and provision of a personal care worker on an ongoing basis, attempting a person’s residential address once a day to read their mail. This is not only demeaning and intrusive but longer term very expensive to Government.

In a genuine empowering system the person through their ongoing relationship with the RSB (as occurs now) will receive a specialist assessment. This includes consideration of the functional impact of their vision loss and recommendation of the optimum piece of equipment to enable them to undertake this and many other reading tasks independently. This also requires the specialist assessor to be familiar with what equipment is available in a changing environment.

Information

Within the design of the NDIS there is an inherent assumption that people with disabilities or generic assessors possess the knowledge of all issues around vision loss, functional impact and specialist services. The RIS even makes the assumption that people will be able to select their services solely from the “My Disability” website.

The selection and provision of specialist services, matched to the individual’s aspirations requires significantly more information and knowledge of the functional impact and specialist strategies than merely available on a website. This Is particularly so for people entering a system for the first time, who are already in a form of crisis having to adjust to their diagnosis, with no knowledge of what specialist services are available.

The absence of specialist advice will not only deny the individual access to the most appropriate service but may also potentially place them at risk.

in addition, the perceptions of a generic assessor on the abilities of what people who are blind or vision impaired can achieve will also heavily influence negatively what is approved as a reasonable and necessary support.

Funding

The RSB currently receives block funding from the South Australian government which meets 30% of the costs of providing services plus an additional amount from the Commonwealth government to assist with providing specialist employment services. The balance of costs are met through fundraising and philanthropy, in addition people who are blind or vision impaired also receive significant support from volunteers. These invaluable contributions have not been considered in the NDIS or Exposure Draft as being proposed.

All RSB services including assessments, planning and training are provided to clients free of charge.

The Exposure Draft notes the NDIA may provide funding “for persons or entities” (Chapter 2, 14) however the RIS only refers to block funding or individual support packages. In discussions prior to the release of the Exposure Draft, the main fixation of the Government was on ISP’s with an acknowledgement that specialist services, such as the RSB, need to be block funded.

Whilst the RSB believes that for many of its services, given their specialist nature, these are best block funded, there are also many other innovative ways. of

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purchasing services that are more cost effective and protect the consumer. For instance, the RSB proposed in its submission to the Productivity Commission, the concept of trusted intermediaries, a variant of that used by the Department of Veterans Affairs.

It is hoped that consideration of alternative funding strategies will not be excluded as a result of the wording of the Exposure Draft and focus included in the RIS.

Local Area Coordinators (LAC)

The concept of LAC is also fraught with difficulties and, whilst the RSB is not familiar with the Western Australian (WA) experience, a similar system in South Australia, Options Coordination, failed people who are blind or vision impaired and only served to create unnecessary cost and overheads providing services to a very small number of people. Indeed after a number of years and substantial costs and criticism, this model for service delivery was discontinued by the South Australian Government. It is interesting that Dr Duffy notes that under the proposed NDIS model, innovations such as the WA LAC initiative would not have been possible.

discrimination against those acquiring a disability over 65 years of age

Of greatest concern to people who are blind or vision impaired is the artificial segregation between people acquiring their disability and seeking service access before and after the age of 65 years.

Vision loss itself whilst there is correlation with some eye diseases and ageing, for instance Macular Degeneration, it remains a specialist disability issue not an ageing one. Indeed specialist rehabilitation services for people who are blind or vision impaired do not differ markedly based on the date of acquisition and it is clearly a wasteful use of resources to be attempting to create parallel systems for the same specialist assessment and service response.

People who are blind or vision impaired are also further unfairly discriminated against with the age “cut off’ as many will initially rely heavily on their local supports prior to accessing specialist services. This will result in them accessing services later than other disabilities.

The age of 65 being the “cut off’ point for receipt of specialist disability services through the disability system is arbitrary and not based on need, retirement age or any other objective criteria. As noted above, the rehabilitation services for people who are blind or vision impaired required do not vary significantly, nor are

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outcomes different for those acquiring their vision loss over 65 years of age to those delivered to people who are under 65 years of age.

The imposition of a co contribution based solely on the date of the first access request is also discriminatory, inequitable and we believe in breach of the United Nation’s Convention of the Rights of People with a Disability (UNCRPD), the RSB has formally raised a complaint over this discrimination forecast in the Exposure Draft with the UNCRPD, oversight committee.

Section 3(1)(h) of the Exposure Draft notes that the NDIS will only provide effect to certain obligations that Australia has to the NDIS.

The RSB’s view is that Australia is a signatory and given it is unlikely that Legislation changes will be made in the future that the Exposure Draft should meet all

Australia’s obligations.

The RSB recommends:

• The Exposure Draft be reviewed and amended to ensure that it meets all of Australia’s obligations to comply with the UNCRPD.

It is well known and acknowledged that the inability of people who are blind or vision impaired to access specialist assessment and services will lead to increased depression, poverty, social isolation and a need for early institutional care.

Unfortunately, the Age Care Reform process has not demonstrated any recognition of the specialist assessment and service requirements of people who are blind or vision impaired and their right to independence through specialist rehabilitation, taining and equipment. As with the proposed NDIS they will be subject to a generic assessment by the Aged Care Assessment Team (ACAT) which do not assess the functional impact of vision loss with service options being residential care, low level community care packages built on personal care type services for which a co contribution is required or more. The most likely outcome will be no services at all as a result of vision loss.

The issue of both the inadequacy of generic assessments and poor outcomes from not seeking specialist disability services within the Aged Care Sector is demonstrated by the following which has occurred.

A person who is blind sought assistance through the Aged Care System and as a result underwent an ACAT generic assessment. This generic assessment did not identify the functional impact of her vision impairment or services available but rather did identify her as at significant risk of a fall.

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As a Result Of Her Being Deemed High Risk,

As a result of her being deemed high risk, she had a residential care package to a value of in excess of $100,000 per year approved. Fortunately, a specialist blindness agency become involved and after the provision of some specialist mobility training (estimated cost of $5,000) which was unfunded this person was able to remain in their own home and independent.

Senator McLucas at the ABF Forum acknowledged this issue is unique to sensory loss and advised that an exemption for people with sensory loss would be considered. However there is no exemption or grounds to create an exemption in the Exposure Draft, something the RSB believes requires amendment.

Accordingly not only based on the comments made by Senator McLucas but also in order to create flexibility if specific circumstances warrant (for instance it is the RSB’s belief that Chapter 3 22 (2) of the Exposure Draft was created specifically to enable the launch sites to be created with their patchwork of age groups) that an exemption be granted.

If specific groups, based on a range of criteria such as age, disability or residency are identified and the needs best met by an NDIS then the rules are able to be amended to enable this access.

The RSB recommends:

• The Exposure Draft be amended to enable exemption from age, disability or residency requirements in circumstances where a specific group is identified as having their needs met most appropriately by an NDIS.

In the absence of this change, the RSB believes that it is incumbent on Government, prior to approving the Exposure Draft, to demonstrate, in accordance with its responsibilities under the National Health and Hospitals Agreement where people over the age of 65 years will access specialist disability services to at least a standard that currently exists.

Loss Of Innovation

The Exposure Draft and RIS expresses a view that market competition and a need to “attract” a client will lead to innovation. It is the RSB’s view that this will not occur.

Under the system proposed, the Government will be the price setter and as a result services will be built to a price. The South Australian Government, for instance, has introduced a “traffic light” system for individual plans whereby, for approval to be granted at the local level, service costs must fall within a range as defined by them and their budget constraints. This range is not calculated based on the providers

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true cost of providing the service and incorporates no provision for investing in innovation.

Similarly, it is highly unlikely that in a market place driven by price that a “for profit” provider will reduce their returns to innovate on behalf of Government.

Given that the Exposure Draft is creating a Government “centralised” contro! model, it would also seem unlikely that innovations in the local community would be encouraged.

Accordingly, the RSB believes that a specific Clause in the Exposure Draft (rather than inclusion as a general function of an NDIA) is required to quarantine funds and make the NDIA accountable for encouraging local innovations in the provision of disability services.

The RSB recommends:

• The Exposure Draft be amended to introduce a Clause specifically requiring the NDIA to invest in local community initiatives and not be just a general function. Further, that the NDIA be required to report to Parliament on innovations that have been funded and their outcomes.

Transitional Arrangements

The RSB notes 21(2)(b)(i)-(iii) of the Exposure Draft however does not understand the impact or operation of this. In the absence of which the Exposure Draft is silent on the transitional arrangements that apply to people over the age of 65 years already in receipt of disability services, (whether funded or not), something that clearly requires a clear direction.

Accordingly the RSB believes that a clear statement to the effect that all people, irrespective of their current age, registered with a specialist provider be automatically entitled to be participants of an NDIS.

The RSB recommends:

• The Exposure Draft Clause 21(2)(b)(1)-(iii) be amended to ensure that all people currently registered as “clients” with specialist disability agencies be automatically entitled to be participants in the NDIS.

Other Areas not considered

The RSB has noted that other than the reviewable decisions, there is no avenue for a participant or potential participant to complain with regard to the operations or support they receive from an NDIA.

Accordingly the RSB believes that the Exposure Draft requires some reference to a complaints process.

The RSB Recommends:

• The Exposure Draft be amended to reference a complaint’s process for potential participants or participants.

In addition, the Exposure Draft makes no provision for either the potential participant or the participant to have an advocate present to assist then in their “conversations” with the NDIA.

The RSB Recommends:

• The Exposure Draft be amended to reference the right of people with disabilities to have an advocate present for any interaction with the NDIA and for this to be a funded activity.

Specific comments on the Exposure Draft Clauses, for which the RSB seeks clarification or, is providing feedback

With regard to specific areas within the Exposure Draft the RSB wishes to specifically comment on the following:

3 (1)(b) “Support the independence and social participation of people with a disability”

Clearly this is in conflict with the age requirement that a person be aged under 65 years at the date of first service request. it is the RSB’s view that people who are blind or vision impaired have a disability irrespective of the age at the first service request. This either requires amendment to formally state the scheme is age discriminatory or allow general access to the scheme based on the need for specialist disability services which is the RSB’s recommendation.

3(1)(c) “Provide reasonable and necessary supports, including early intervention supports”

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The term reasonable and necessary is linked to the need to ration services however there is nothing in the Exposure Draft to set parameters around how this will operate.

The RSB believes, given that the system proposed will be a crisis driven and rationed system reliant on yearly “Government” budgets, that people with a disability have a right as part of the Exposure Draft to have this defined and not just have this and eligibility varied based on the funding available to an NDIA.

This arbitrary rationing would not be necessary if a genuine entitlement scheme was created.

The RSB recommends:

• The Exposure Draft be amended to include provision for people requiring episodic services to be able to receive these from a specialist provider without the requirement to renavigate the NDIA.

The RSB recommends:

• The Exposure Draft be amended to include the provision of specialist assessments in the consideration of “reasonable and necessary” and the creation of the plan.

3(1)(e) Facilitate the development of a nationally consistent approach to the access to and the planning and funding of supports for people with a disability.

As noted above, the RSB believes that the NDIS, as proposed (in the absence of rationing) will be financially unsustainable. Further a “one size fits all” approach to disability will overlook the specialist needs of people who are blind or vision impaired. |

The centralised model being created ignores local circumstances, supports and also forces people with disability into an unfortunate relationship with a generic assessor that, in effect, controls their access to services based on their own generic knowledge base, perception of the ability of people who are blind or vision impaired or available budget. As a result, this will lead to poor outcomes and further individual

crisis occurring.

Further if benchmarks are to be created for an NDIS then there is a need to ensure that the specialist needs of people who are blind or vision impaired are included, measured and reported and not lost in a generic system.

3(1)(h) “Gives effect to certain obligations that Australia has as a party to the Convention on the Rights of Persons with Disabilities”.

As noted above, the RSB believes that as a signatory to the UNCRPD, any future Legislations including this Exposure Draft has to comply with Australia’s International commitment.

This includes enabling all people with a disability to be able to achieve the quality of life to which they aspire and enjoy the benefits of full citizenship. Clearly excluding 90% of people with a disability under the age of 65 years and effectively 100% of people with a disability over the age of 65 years, falls well short of this requirement.

3(2)(b), 3(3)(b) and 4(15)(a) As noted above, the NDIS as proposed is financially unsustainable (in the absence of rationing). It is the RSB’s understanding that no commitment for future funding of an actuarial analysis has been made. Given the above, these appear to be in conflict in the absence of a guarantee to fund the NDIS into the future. ,

The RSB is also concerned, on what basis an actual analysis would be done, clearly if the guidelines specify the costs of only 10% of people with a disability then the NDIA will only work to include 10% of people with disabilities in their budgets.

(3) “People with disability and their families and carers should have certainty that people with disability will receive the care and support they need over their life time’.

Given the exclusion of people seeking first service access for specialist disability services over the age of 65 years, this is clearly not true. Aged Care services currently and it is unlikely in the near future do not make any provision for people with a disability requiring specialist disability services.

4(5) “People with disability should receive reasonable and necessary supports, including early intervention supports’.

The RSB’s concern as noted above in the crisis driven, rationed system being proposed, in order for the NDIA to remain sustainable there will be a need to increase eligibility thresholds and relegate people into either Tier 2 or no support.

The RSB believes that people with a disability should have an entitlement to be independent and participate in the community and that this should not be dictated to by a centralised system or budget. This includes access to specialised training and equipment.

(14) “Agency may provide funding to persons’ or entities”.

The RSB relies heavily on the services of over 900 volunteers, which is the equivalent of over 80 full time equivalent staff, in order to deliver the quality and range of services currently available. It is unsure, based on this, whether funding to

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maintain this service including co-ordination, recruitment, training and costs for volunteers would be funded.

Further, rather than including the funding of innovation (which should be localised), benchmarking etc in Part 8 (a) and (b) under the function of an NDIA it should be specifically included as a separate Clause to ensure resources are specifically allocated for this purpose.

(20) “The CEO must, within 21 days of receiving the access request”.

As noted above, specialist services for people who are blind or vision impaired are episodic in nature, normally required at a time of change. Clearly the death of a partner, significant loss of further vision or even a broken white cane need an urgent response to prevent a further crisis or the impact of the vision loss degenerating further.

The current system enables the RSB to respond immediately when the above circumstances arise. These people, given the fact that the nature of interventions are episodic may not have a service plan (be an active participant) at the time. A future NDIA needs to have flexibility to enable people who are blind or vision impaired to move in and out of the system and receive immediate access to specialist services and not be lost in a generic system.

(21)(2)(b)(i)-(iil)

This is unclear and does not provide a direction for the purposes of any transitional arrangements. The RSB believes that all people currently clients of any specialist service providers, irrespective of their disability, or whether the service was funded or unfunded, should be automatically entitled to be participants of an NDIS.

(22) Age Requirements

The RSB has made substantial comment above including noting Senator McLucas’ undertaking to consider an exemption for people with a sensory disability seeking a first service access over the age of 65 years.

We believe the Exposure Draft needs to be amended to enable, as has been the case for the launch sites, an exemption for specific groups from the age requirement.

(24) Disability Requirements There is no definition of the activities 24(1)(i) to (vi) for instance does (i) communication does this relate to the ability to read normal print, what is social interaction etc. The RSB believes that these need to be defined.

Further (24)(1)(e)

requires that the “nerson’s” support needs in relation to his or her impairment or impairments are likely to continue for the person’s lifetime. This appears to be a further example of the proposed NDIS being built on holistic, personal care services rather than a focus on re-enablement.

For people who are blind or vision impaired their needs will be episodic and specialist services will provide support, training and equipment to enable them to be independent until such time as there is a further change in. their circumstances. The RSB has assumed that the fact that after intervention people are able to undertake tasks independently will not exclude them from the NDS in the future.

Requests that the CEO may make……

In this instance, the CEO may request either:

• “An NDIA assessment”, which will be generic in nature and we assume, based on the criteria in (24). It is unlikely that a generic assessor will be able to identify the functional impact of vision loss against this criteria, or

• “Undergo a medical, psychiatric or psychological examination“, whilst a medical examination may provide details of a person’s vision loss and the likely progression, it will not assess the functional impact.

Accordingly the RSB believes that this needs to be extended to include specialist assessments that provide information on the functional impact of a disability. This should not just be prescribed in the rules (27)(2)(b)).

(29)(1)(b)

This Clause appears to have been created to prevent a person “double dipping” between the NDIS and the Aged Care System and is again predicated on the primary response from an NDIS being a personal care service.

In the case of a person who is blind or vision impaired, they may require both a specialist disability service, eg Orientation and Mobility service which they may have received when required for many years from their specialist provider. However as a result of ageing and other co-morbidities, now require some personal support which is accessed through the generic ACAT assessment. Based on this, this person would now lose access to their specialist disability service or if able to access it through Aged Care Services be liable for a co-contribution.

Accordingly the RSB believes that any “double dipping” needs to be eliminated between Government agencies and not transferred to the person with a disability.

(33) Matters that must be included in a participant’s plan“

Whilst the RSB agrees on the need to standardise the participants plan in order to enable consistency and benchmarking, it believes the exclusion of specialist

Assessments and Understanding

assessments and understanding of the functional impact of vision loss are critical in identifying support required.

For instance, for a person who is blind or vision impaired, their inability to read normal print, which is a factor in their social and economic participation, does not indicate a need for reading lessons as a general support, but rather a specialist response such as magnification or alternative reading strategies.

Accordingly the RSB believes that this requires amendment to include specialist assessments to identify the functional impact of a disability.

(54) & (56) “Written notice of requirement’.

Any written notice needs to be in the person’s preferred print format. For people who are blind or vision impaired, this may include electronic file, large print, audio or braille. Whilst not specified, the RSB has assumed that this would be mandatory.

(99) to (103) “Review of decisions’.

The RSB notes that all “reviewable decisions” are to be reviewed by a person delegated by the CEO who was not part of the original decision making process. The only other remedy being an application to the Administration Appeals Tribunal to review these decisions.

Accordingly the RSB believe that the appointment of an independent adjudicator would be a more efficient and cost effective way of dealing with a reviewable decision.

The RSB Recommends: The Exposure Draft be amended to incorporate an independent review process of reviewable decisions that does not require the intervention of the Administrative Appeals Tribunal.

Recommendations

Recommendation 1:

The Exposure Draft be amended to ensure, as per Senator McLucas’ undertaking, that all people who are blind, vision impaired or deaf/blind will be eligible for a funded specialist disability service.

Recommendation 2:

If the Tier System is an embedded element within an NDIS then it should be reflected in the Exposure Draft. If not the RIS needs to be amended anda further consultation conducted on the regulatory impact, in the absence of which the RIS (a requirement for major policy change) is meaningless.

Recommendation 3:

The Exposure Draft be reviewed and amended to ensure that it meets all of Australia’s obligations to comply with the UNCRPD.

Recommendation 4:

Given the unique needs and specialist service responses required for people who are blind or vision impaired and that they will not be identified or addressed in a generic system that the Exposure Draft be amended to recognise the need for specialist assessments and services. Further that specific pathways be created to enable direct access to these and the ability for people who are blind or vision impaired to access these specialist support services at times of change.

Recommendation 5:

The Exposure Draft be amended to enable exemption from age, disability or residency requirements in circumstances where a specific group is identified as having their needs met most appropriately by an NDIS. In the absence of this change, the RSB believes that it is incumbent on Government, prior to approving the Exposure Draft, to demonstrate, in accordance with its responsibilities under the National Health and Hospitals Agreement where people over the age of 65 years will access specialist disability services to at least a standard that currently exists.

Recommendation 6:

The Exposure Draft be amended to introduce a Clause specifically requiring the NDIA to invest in local community initiatives and not be just a general function. Further, that the NDIA be required to report to Parliament on innovations that have been funded and their outcomes.

Recommendation 7:

The Exposure Draft Clause 21(2)(b)(1)-(iii) be amended to ensure that all people currently registered as “clients” with specialist disability agencies be automatically entitled to be participants in the NDIS.

Recommendation 8:

The Exposure Draft be amended to include provision for people requiring episodic services to be able to receive these from a specialist provider without the requirement to renavigate the NDIA.

• The Exposure Draft be amended to include the provision of specialist assessments in the consideration of “reasonable and necessary” and the

  creation of the plan.

• The Exposure Draft be amended to incorporate an independent review process of reviewable decisions that does not require the intervention of the

  Administrative Appeals Tribunal.

• The Exposure Draft be amended to reference a complaint’s process for potential participants or participants.

• The Exposure Draft be amended to reference the right of people with disabilities to have an advocate present for any interaction with the NDIA and for this to be a funded activity.