Submission regarding NDIS support for older Australians with macular disease | External submission

Submission to the Joint Standing Committee on the National

Disability Insurance Scheme

Inquiry into transitional arrangements for the NDIS

August 2017

Macular disease is the leading cause of blindness and severe vision loss in Australia Suite 902, Level 9, 447 Kent Street, Sydney NSW 2000 ABN: 52 096 255 177 Helpline: 1800 111 709 Phone: 02 9261 8900 Fax: 02 9261 8912 www.mdfoundation.com.au

Introduction Macular Disease Foundation Australia was established in 2001 and is the peak national body representing the macular disease community. The Foundation’s vision is to reduce the incidence and impact of macular disease in Australia.

Macular disease causes vision loss and blindness. It affects the retina at the back of the eye, which is responsible for central vision. The two macular diseases which have the most significant impact on the Australian population are aged-related macular degeneration (AMD) and diabetic retinopathy. AMD is the leading cause of blindness, contributing over 50% of all severe vision loss and blindness and primarily affects older Australians1; Diabetic retinopathy is rising rapidly due to the massive increase in the prevalence of diabetes, where numbers are expected to at least double between 2004 and 2024.2 Diabetic retinopathy is the leading cause of blindness among working age Australians2.

The Foundation has actively engaged in consultations relating to the development of the National Disability Insurance Scheme (NDIS). It supported the establishment of the NDIS but remains concerned that people who acquire a disability at the age of 65 years or over are excluded from becoming NDIS participants. The Foundation’s position is that older Australians who are excluded from the NDIS need to receive an equitable level of disability support, which is currently inadequately provided in the aged care system. In addition, there are policy and program issues which are preventing the NDIS from optimally supporting people with a disability. To address these matters, the Foundation makes the following recommendations:

Establish an interface between the NDIS and the aged care system to ensure that people with a disability aged 65 or over have access to appropriate and adequate disability support services, and at an equitable level with those under the age of 65 years old.
The establishment of a nationally funded, accessible, affordable and consistent low vision aids and equipment program, to replace the current state/territory government programs.
The NDIS contract specialist disability organisations to conduct specialist disability assessments as part of the formal planning process.
The Information, Linkages and Capacity Building (ILC) program be made responsible for funding disability organisations to provide sustainable information, linkages and capacity-building services that support and empower their respective disability communities.
Terms of Reference (a): The boundaries and interface of NDIS service provision, and other non-NDIS service provision, with particular reference to health, education and transport services

2.1 Establishing an interface between the NDIS and the aged care system

Recommendation 1 Establish an interface between the NDIS and the aged care system to ensure that people with a disability aged 65 or over have access to appropriate and adequate disability support services, and at an equitable level with those under the age of 65 years old.

The Foundation highlights that an area of great concern for people with a disability is the uncertainty of the future of state and territory disability programs.

The Bilateral Agreements between the Commonwealth and the state and territory governments have resulted in state and territory disability funding being redirected to the

NDIS, and the provision of disability support for those who acquire a disability at the age of 65 or over becoming the responsibility of the Commonwealth. For those who are not NDIS participants, it is a concern that they will lose access to existing support services which may cease to operate and not be replaced.

Those who acquire a disability at the age of 65 years or over have to access their disability support services through the aged care system. The key area of inequity between the NDIS and the aged care system is that the aged care system provides limited and inconsistent access to specialist disability support services, whereas the NDIS provides full access to these services.

The Commonwealth Government’s Continuity of Support program, which is meant to continue funding specialist disability services for consumers who are ineligible for the NDIS following the cessation of funding from state and territory governments, is only a temporary measure and will not accept new participants after the full roll-out of the NDIS. Once the NDIS is fully rolled out, all Australians who acquire their disability at the age of 65 years or over will have to receive their disability support needs from the aged care system.

Reforms could be implemented to create an interface where aged care consumers are able to use their aged care funding to purchase specialist disability services from the NDIS and/or NDIS registered services. From the perspective of reducing the NDIS costs, allowing aged care consumers to use their aged care funding to access the NDIS will open up a new funding source that supports the NDIS.

From the perspective of aged care consumers with a disability, accessing the NDIS will enable them to get the most appropriate care for their disability needs. The aged care system does not have the expertise or funding mechanisms to adequately provide specialist disability support services to consumers. Existing aged care programs do not provide services and packages designed around a person’s disability. For example, a person with low vision is unable to be assessed for an aged care program to primarily obtain low vision aids for assistance with reading, even though this is essential for the person to live independently in his/her own home. This means that, to cope with the disability needs of older Australians, there will need to be a new disability sub-system established within the aged care system.

Rather than duplicating a disability sub-system within the aged care system, which would be an additional cost to the Commonwealth Government, it would be far more effective and efficient that aged care consumers be enabled to use their aged care funding to access specialist disability support services in the NDIS.

2.2 Establishing a national low vision aids and equipment program

Recommendation 2 The establishment of a nationally funded, accessible, affordable and consistent low vision aids and equipment program, to replace the current state/territory government programs.

The cost of low vision aids and equipment, and the associated training to use them effectively, can be prohibitive to individuals. For example, a person with slight vision loss may use an optical magnifier which costs between $7 to $530. However, that optical magnifier may not be appropriate once that person’s vision loss becomes more severe, and an Electronic Desktop Magnifier, costing between $3,000 to $7,000, will then be needed.3

Government subsidies for low vision aids and technologies exist, however they are inconsistently provided across the country. Low vision aids are not covered under Medicare,

therefore people who cannot afford to purchase devices privately, rely on either national or state and territory based subsidies to cover the cost.

On the national level, people with vision loss or blindness may seek to access subsidised low vision aids and technologies through one of two systems, the NDIS or the aged care system, depending on whether they are diagnosed before or after the age of 65 years old.

Those who are diagnosed under age of 65 years old and meet the other eligibility requirements are able to access fully funded low vision aids and technologies from the NDIS. Those diagnosed at the age of 65 years old or over are excluded from the NDIS and have limited access to subsidies in the aged care system, as there is a lack of inclusion of disability support in aged care policy and legislation.

The existing aged care programs are not appropriately designed to provide services and packages based on a person’s disability. The Commonwealth Home Support Programme (CHSP) has a policy which is meant to provide low vision aid subsidies, however this policy currently remains unfunded. The provision of low vision aids through the Home Care Packages program and residential care facilities is inconsistent as it is dependent on negotiations between the consumer and the provider.

On the state and territory level, government subsidies are inconsistent as they are limited to the respective jurisdictions. State and territory government aids and equipment programs have different budgets, scope, eligibility requirements and levels of subsidy. Some schemes require no consumer co-payments but limit eligibility and scope, while others have broader eligibility and scope but require user co-payments. The provision of low vision aids and technologies is excluded from the main aids and equipment programs in Tasmania, South Australia and Western Australia, but may be provided through other state-funded agencies at a different level of subsidy or at cost to the consumer.

Accessing certain Commonwealth Government programs, such as the Home Care Packages and residential care, will also render consumers ineligible for many of the state and territory based aids and equipment programs.

The inconsistent policies for aids and equipment subsidies by Commonwealth and state and territory governments, and the separation between state/territory and Commonwealth program funding and policies, have created barriers which prevent vulnerable people with vision loss or blindness from accessing low vision aids and technologies.

To equitably provide appropriate support to all Australians with vision loss or blindness, there is an urgent need to fund and standardise the eligibility, access and co-payment requirements for low vision aids and technologies across the country. However, given the significant differences in the provision of low vision aids and technologies subsidies amongst the different existing Commonwealth, state and territory government programs, the most effective course of action may be to separately establish a new national low vision aids and equipment program. In comparison with the Hearing Services Program4, which costs the Federal Budget over $500 million a year5, the Foundation developed its own cost modelling and estimates that an initial national low vision aids and equipment program would cost $30 $50 million a year6.

Terms of Reference (b): The consistency of NDIS plans and delivery of NDIS and other services for people with disabilities across Australia

Recommendation 3 The NDIS contract specialist disability organisations to conduct specialist disability assessments as part of the formal planning process.

The Foundation is aware that the NDIS is utilising generic disability planners who have limited disability knowledge. Whilst it is acknowledged that it is not physically or logistically possible for planners with specialist disability knowledge to be matched with every NDIS participants’ disabilities and conditions on a national scale, the NDIS appears to not be effectively leveraging existing expertise from specialist disability organisations.

The Foundation had previously envisioned NDIS planners to be in the role of a coordinator and facilitator, and that they refer NDIS participants to specialist disability organisations for specialist disability assessments. However, the NDIS currently uses in-house planners with generic disability knowledge. These planners may not be experts in the disability area related to the NDIS participants’ needs, and as such are guided by NDIS policies including the budget-based approach.

The Foundation previously assisted the NDIS in the development of low vision severity indicators to provide guidance to NDIS planners about matching the support services required with a person’s level of vision loss. However, this was supposed to be a way to educate NDIS planners, and not to serve as prescriptive package designs.

As a result, it appears that the planning process has become a negotiation, where the participant is trying to obtain the most appropriate support (regardless of the cost) but the planner is trying to design the support plans as close to the reference packages as possible. This is likely to create inconsistencies where people with similar disability needs are provided with different plans, as the outcome is now based on the participants’ negotiation skills with the planner not being able to provide expert opinion.

The NDIS should instead be engaging specialist disability organisations in the assessment process. The Foundation proposes that the NDIS fund these organisations to conduct assessments on a referral basis. The NDIS planner will then serve the role of a coordinator and budget manager, and work with these contracted specialist disability assessors to provide the most appropriate disability services within the budget range.

There is a real concern that, if the current generic assessment process continues, participants will not receive the most appropriate support services during the initial assessment, resulting in the need for reassessments and complaints resolution which incur unnecessary cost to the NDIS. The Foundation’s proposed changes would create a more effective and less costly assessment process, as it utilises the specialist disability knowledge that already exists in the disability sector.

Terms of Reference (c): The rollout of the Information, Linkages and

Capacity Building Program

Recommendation 4 The Information, Linkages and Capacity Building (ILC) program be made responsible for funding disability organisations to provide sustainable information, linkages and capacity building services that support and empower their respective disability communities.

In the recent consultation on the National Disability Insurance Scheme Amendment (Quality and Safeguards Commission and Other Measures) Bill 2017 (Amendment Bill), the Information, Linkages and Capacity Building (ILC) funding was defined to be for the purposes of enabling the provision of information in relation to disability and disability supports and services; assistance in building capacity within the community in connection with the provision of goods and services to people with disability and their families and carers; assist people with disability to realise their potential for physical, social, emotional and intellectual development; or assist people with disability, and their families and carers, to participate in social and economic life.7

However, the Foundation highlights to the Committee that despite the broad scope of the ILC as described in the Amendment Bill, the current ILC Commissioning Framework applies a number of limitations to funding which do not appropriately support the work of disability organisations. First, the ILC does not fund activities which duplicate the work of NDIS Local Area Coordination (LAC), thereby limiting funding for disability organisations to provide information and linkage services. Second, ILC does not provide recurrent core funding, which means only short-term projects are likely to be funded. Third, ILC prioritises funding for people with a disability under the age of 65 years, even though people who acquire a disability aged 65 years or over are in greater need of support as they are ineligible for NDIS Individually Funded Packages.

It is noted that the ILC has changed significantly since it was initially proposed. Originally in the Productivity Commission’s 2011 Disability Care and Support report, the ILC was intended to fund “Tier 2” programs including block funding and early intervention programs. This would provide access to disability and mainstream services for those who were ineligible for NDIS Individually Funded Packages. However, other than funding for LAC activities, the ILC now only covers time limited and ad hoc projects.

As a result, the ILC does not provide funding for substantial ongoing services and will not ensure support for individuals who fall through the disability service gaps. The Foundation’s position is that the ILC should be responsible for funding disability organisations to provide continuing information, linkages and capacity-building services that empower their respective disability communities.

About Macular Disease Foundation Australia Macular Disease Foundation Australia is a national, independent charity established in 2001. It is the only organisation in Australia that specifically supports the needs of the macular disease community.

The Foundation’s vision is to reduce the incidence and impact of macular disease in Australia.
The Foundation is recognised nationally and internationally as the Australian peak body for macular disease.
The Foundation has a national client base of over 54,000 people, across all states and territories, comprising: those at risk of developing, or living with macular disease, their

family and carers; eye care and allied health professionals including optometrists, ophthalmologists, orthoptists, occupational therapists, dietitians, pharmacists, GPs, diabetes organisations, residential aged care facilities, university faculties and students, low vision rehabilitation providers; CALD communities; industry groups, key interest and advocacy groups.

The Foundation’s work in education, awareness and support services directly correlates to and supports the National Framework for Action to Promote Eye Health and Prevent Avoidable Blindness in Australia.
The Foundation has a powerful voice in the eye health sector for its clients, and has developed tools and expertise to ensure it effectively communicates and represents the views of clients.

Macular disease in Australia

It is estimated that there are approximately 8.5 million people at risk of macular disease and over 1.6 million Australians with some evidence of macular disease.1,2
Macular disease is the greatest contributor to chronic eye disease in Australia.8
Macular disease is a large group of sight-threatening conditions that affect the central retina at the back of the eye, which is responsible for detailed central vision. These diseases include age-related macular degeneration, diabetic retinopathy, retinal vein occlusions and numerous other macular dystrophies.
Age-related macular degeneration and diabetic retinopathy have been categorised as priority eye diseases for the prevention of blindness and vision impairment by the World Health Organization.
The most common macular disease in Australia is age-related macular degeneration:  Age-related macular degeneration is a chronic disease with no cure.  It is the leading cause of blindness and severe vision loss in Australia and is the cause of 50% of blindness in Australia.1,9  1 in 7 (1.25 million) people over the age of 50 years have some evidence of age related macular degeneration.1  This is estimated to increase to 1.7 million by 2030, in the absence of adequate treatment and prevention measures.  Primarily affects those over the age of 50 and the incidence increases with age.  Age-related macular degeneration is a major chronic disease with a prevalence 50 times that of multiple sclerosis and 4 times that of dementia.1  The impact of age-related macular degeneration on quality of life is equivalent to cancer or coronary heart disease.8  Smoking is a key risk factor as it increases the risk of developing age-related macular degeneration by 3 to 4 times and smokers, on average, develop age related macular degeneration 5 to 10 years earlier than non-smokers1.
Diabetic retinopathy is the leading cause of blindness among working age adults in

Australia:2

 Almost 1.1 million Australians have diagnosed diabetes. Of these, over 300,000 have some degree of diabetic retinopathy and about 65,000 have progressed to sight-threatening eye disease.  The longer you have diabetes, the greater the likelihood of sight threatening eye disease.  The expected growth in the number of Australians living with diabetes will lead to a corresponding rise in diabetic retinopathy and vision loss – numbers are expected to at least double between 2004 and 2024.  Almost everyone with type 1 diabetes and more than 60% of those with type 2 diabetes will develop some form of diabetic retinopathy within 20 years of diagnosis. Significantly, many people with diabetes are diagnosed late, by which time retinopathy may already be present.

 Almost all cases of vision loss from diabetic retinopathy can be prevented with regular eye tests, careful management of diabetes, medication and in some cases, treatment with anti-VEGF agents and/or laser and/or steroids.

Socio-economic costs of vision loss in Australia

There is a high cost of vision loss from macular disease to government. Even a modest reduction in the proportion of people who progress to vision loss will generate significant savings.
Vision loss from age-related macular degeneration:  In 2010, the total cost of vision loss, including direct and indirect costs, associated with age-related macular degeneration was estimated at $5.15 billion, of which the financial cost was $748.4 million ($6,982 per person).1  The socio-economic impacts of age-related macular degeneration include: o Lower employment rates. o Higher use of services. o Social isolation. o Emotional distress. o An earlier need for nursing home care.
Vision loss from diabetic retinopathy:  As diabetic retinopathy frequently affects people of working age, the social and economic impact of vision loss can be dramatic and long-lasting. People with vision loss from diabetic retinopathy experience higher rates of unemployment and underemployment, reduced safety in the workplace and home, increased rates of depression and greater dependence on carers due to an inability to drive, mobilise independently and undertake common activities. It is clear that even modest reductions in the proportion of people who progress to vision loss will generate significant savings to government.2  Vision loss from diabetic retinopathy is nearly always preventable; however thousands of Australians continue to lose vision from the disease. Awareness of the risk of blindness from diabetes is low, and compliance to recommended testing regimens, risk reduction strategies and treatment protocols remains unacceptably poor.2  Vision loss in patients with diabetes also directly interferes with essential tasks to manage diabetes such as insulin administration, glucose monitoring, and exercise, making diabetes progression and other complications more likely.10

References 1 Deloitte Access Economics and Macular Degeneration Foundation (2011). Eyes on the future: A clear outlook on Age-related Macular Degeneration. 2 Out of sight – A report into diabetic eye disease in Australia, 2013, Baker IDI and Centre for Eye Research Australia. 3 Macular Disease Foundation Australia and The George Institute for Global Health (2017). Low vision, quality of life and independence: A review of the evidence on aids and technologies. 4 Department of Health, Hearing Services Program. Accessed at: http://www.hearingservices.gov.au/ 5 Department of Health, 2016-17 Federal Budget, Outcome 4 – Individual Health Benefits, available at: https://www.health.gov.au/internet/budget/publishing.nsf/Content/2016-2017_Health_PBS_sup2/$File/2016-17_Health_PBS_2.04_Outcome_4.pdf 6 Macular Disease Foundation Australia (2017). Cost estimate of a federally funded low vision aids and technology program. Unpublished.

7 National Disability Insurance Scheme Amendment (Quality and Safeguards Commission and Other Measures)

Bill 2017, pages 81-82. 8 The Global Economic Cost of Visual Impairment Access Economics & AMD Alliance international 2010. 9 Taylor H et al, MJA 2005;182:565-568. 10 Leksell JK, Wikblad KF, Sandberg GE. Sense of coherence and power among people with blindness caused by diabetes. Diabetes Res Clin Pract. 2005;67:124-129.