Response to inquiry on needs of people with macular degeneration

Response to the Inquiry into

the National Disability

Insurance Scheme Bill 2012

January 2013

25 January 2013

Mr Ian Holland

Committee Secretary

Senate Standing Committee on Community Affairs

PO Box 6100

Parliament House

Canberra ACT 2600

Australia

community.affairs.sen@aph.gov.au

Dear Mr Holland,

Re: Inquiry into the National Disability Insurance Scheme Bill 2012

The Macular Degeneration Foundation welcomes the opportunity to provide a submission to the Senate Community Affairs Legislative Committee in response to the inquiry into the National Disability Insurance Scheme Bill 2012.

We support the National Disability Insurance Scheme (NDIS), and it is critical to ensure that the NDIS is fair, equitable and meets the needs of all people with macular degeneration. Macular degeneration is the leading cause of legal blindness and major vision loss in Australia. 50 per cent of all legal blindness in Australia is due to macular degeneration. While the prevalence of macular degeneration increases with age, it is not a normal or inevitable consequence of ageing.

We have noted that a public hearing for this inquiry has been arranged for 1 February 2013 in Sydney, and would like to register our interest in attending the hearing to present our feedback on the NDIS. We look forward to continuing to work with the Commonwealth Government in the interest of the macular degeneration community.

Please find a copy of the submission enclosed.

Yours sincerely,

Julie Heraghty

Chief Executive Officer

Macular Degeneration Foundation

Macular Degeneration is Australia’s leading cause of blindness Suite 902, Level 9, 447 Kent Street SYDNEY NSW 2000 Helpline: 1800 111 709 Phone: 02 9261 8900 Fax: 02 9261 8912 ABN: 52 096 255 177 www.mdfoundation.com.au

Summary of recommendations

1. The Macular Degeneration Foundation recommends the NDIS age requirements (section 22 of the National Disability Insurance Scheme Bill 2012) be amended to include people aged 65 years and over.

2. The Macular Degeneration Foundation recommends the Commonwealth Government guarantee access to and affordability of an equivalent level of disability supports and services for people aged 65 and over, if the NDIS excludes older Australians, through mechanisms that include aged care reform and enacting separate legislation.

3. The Macular Degeneration Foundation recommends that the National Disability Insurance Scheme Bill 2012 be reviewed in its entirety to ensure that it fulfils all of the obligations that Australia has as a party to the United Nations Convention on the Rights of Persons with Disabilities.

4. The Macular Degeneration Foundation recommends the NDIS adopt a fundamental principle that persons with a disability must not be denied access to the NDIS purely on the basis of failing a generic assessment, and should be offered a specialist assessment before proceeding to the review process.

5. The Macular Degeneration Foundation recommends that specialist assessments be integrated into the NDIS assessment process.

6. The Macular Degeneration Foundation recommends that both specialist and generic assessment processes adopt a person centred approach to individualised planning.

7. The Macular Degeneration Foundation recommends that guidelines be drafted to ensure that NDIS participants will be able to access funding for low vision aids and technology (LVAT).

8. The Macular Degeneration Foundation recommends that an independent review body be established to review decisions and resolve complaints in a way that is truly independent and accessible.

9. The Macular Degeneration Foundation recommends that standards and accreditation guidelines be developed for the low vision sector, to ensure high quality services and equipment for people who are blind or vision impaired following the launch of the NDIS.

10. The Macular Degeneration Foundation recommends that the Commonwealth Government take action to ensure the sustainability of the low vision sector following the launch of the NDIS, including running awareness campaigns to encourage philanthropy and increasing funding for low vision organisations.

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Introduction

The Macular Degeneration Foundation’s submission focuses on the impacts the NDIS will have on people with macular degeneration, and covers the following areas:

1. Access to disability supports and services for people aged 65 and over
2. Obligations to the United Nations Convention on the Rights of Persons with

Disabilities

3. Integrating specialists into the NDIS assessment process
4. NDIS funding for low vision aids and technology
5. Independent review body
6. Standards and accreditation
7. NDIS impact on philanthropy Macular degeneration is a progressive, chronic, incurable disease of the macula (central retina) at the back of the eye. It leads to a loss of central vision, affecting the ability to read, drive, recognise faces and perform activities requiring detailed vision.1 Macular degeneration affects central vision and does not produce total or black blindness.

Prevalence

Macular degeneration is the leading cause of legal blindness and major vision loss in Australia.2,3 50 per cent of all legal blindness in Australia is due to macular degeneration. While the prevalence of macular degeneration increases with age, it is not a normal or inevitable consequence of ageing. In 2010, 12 per cent of people over 50 years of age (856,000 people) had early signs of macular degeneration (with no loss of vision) and 2 per cent of people over 50 years of age (167,000 people) had late stage macular degeneration where vision is affected. Of these, about 107,000 have both eyes affected.

Legal blindness It is estimated that in 2010, between 39,000 and 73,000 Australians were legally blind in both eyes due to macular degeneration. In 2007, a highly effective treatment became available for neovascular (or ‘wet’) macular degeneration, the most common cause of serious vision loss and blindness with this disease. This treatment is expected to result in a progressive reduction in blindness from this form of the disease. However not all people with wet macular degeneration benefit from treatment, many became blind before treatment was introduced, and many others experience late ‘dry’ macular degeneration or geographic atrophy, for which there is currently no effective treatment.4

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1. Access to disability supports and services for people aged 65 and over Recommendation 1: The Macular Degeneration Foundation recommends the NDIS age requirements (section 22 of the National Disability Insurance Scheme Bill 2012) be amended to include people aged 65 years and over.

The primary concern of the Macular Degeneration Foundation is the 65 years of age cut off in the NDIS. Currently, the purposed legislation excludes people with macular degeneration who register for the NDIS at the age of 65 years and over. While many people with macular degeneration receive an initial diagnosis before 65, virtually all of the estimated 107,000 people with vision impairing late macular degeneration in both eyes are aged over 655.

The 65 years of age cut off point is an arbitrary and artificial segregation. Disabilities affect people of all ages, and age does not determine the level of services and supports required by people with disabilities. Macular degeneration is not an inevitable consequence of ageing.

It must be highlighted that this age requirement is based on an economic argument and not on health reasons. In drafting the NDIS legislation, the Commonwealth Government has adopted a flawed assumption that older Australians are more likely to have the financial means to pay for their own care and support needs, which was made by the Productivity Commission in its inquiry into Disability Care and Support. As stated in its report,6

Regardless of which system organised the supports, after the age pension age people with a disability would be required to make a capped co-contribution to their care on the same basis as the general population, if they had the financial means. This is consistent with the co-contribution arrangements recommended in the Commission’s parallel inquiry into aged care. The co-contribution reflects that the likelihood of disability in old age is high, can be anticipated, and that people can save to meet those costs.

This proposal would not affect most people who acquired a disability earlier in life because they would not have earned enough income or acquired enough assets to trigger any requirement for co-contributions after the age pension age. However, some people who acquired a disability prior to the pension age may have built up sizeable assets and entitlements to retirement income.

The age requirement is a policy that is inconsistent with the objectives of equity in the NDIS as it discriminates solely on the age that a person acquires a disability. People aged 65 and over are denied entry into the NDIS, yet people under 65, who were 3

already in the NDIS, are able to stay in the scheme for life. Even though persons from these two age groups could experience the same conditions and require the same assistance, only persons who entered the NDIS before the age of 65 would receive fully funded lifetime support and services. In other words, going blind at 64 years and 11 months is far better than going blind at 65 and one month. Unfortunately, those who acquire macular degeneration do not have this choice!

People aged over 65 have been paying taxes for their entire working life. If the NDIS is to be considered an insurance scheme, then taxpayers are contributing the premiums. The current age-based cut-off means that people who develop a disability after 65 cannot claim on insurance for which they have been paying premiums all their life.

At no stage has the government justified its position regarding the 65 year cut off. If the justification is on the basis of sustainability then the system is blatantly discriminatory. If the justification is because people over 65 will be accommodated within the aged care system, then the government must show how this will be done. Currently, there is little or no provision of services and support for people with the disability of low vision within the aged care sector. Despite repeated requests by the Macular Degeneration Foundation to various departments and ministers, a clear and seamless pathway between two major reforms – disabilities and aged care – has not been produced. At the launch of the Living Longer Living Better reform package, the Macular Degeneration Foundation asked Minister Butler how disabilities such as vision loss would be accommodated and funded in the aged care reform. To date, no clear indication of a process or funding has been forthcoming.

It would be a massive waste of resources to create a parallel and duplicate disability system within the aged care system. The supports and services required by people with macular degeneration or other causes of blindness and vision loss do not differ purely on the basis of age. In fact, including all people aged 65 and over in the NDIS would streamline the disability system and benefit all stakeholders by reducing service and administrative costs for the Commonwealth Government and making the system easier to navigate for people with a disability.

There is currently a significant shortage of skilled, qualified workers within the low vision sector. Creating a duplicate system within the aged care sector would further fragment an already struggling workforce at a time of significantly increasing demand.

The Productivity Commission stated that taxpayers should save for the “high likelihood” of disabilities in their older years and that this should be anticipated. Notwithstanding

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the typically limited and fixed incomes of most seniors, it is unreasonable to expect that people can anticipate the costs of a disability.

A very likely scenario…….

Ted is a 66 year old single pensioner living in a small regional town who has managed his limited income well during his working years. He has taken responsibility for health costs by paying for private health insurance all his life. He was diagnosed with early MD at 54, which turned to the wet form when he was 61. Treatment with Lucentis injections preserved his vision until his 66th birthday when he experienced a massive retinal bleed and rapid deterioration in vision. He was declared legally blind 4 months later, 66 years of age.

Ted’s private insurance did not cover the monthly treatment costs of the ongoing, critical, monthly injections for wet MD as these were undertaken in the doctor’s rooms. Despite the Extended Medicare Safety Net, he was (as many patients experience) out of pocket for doctor’s fees for over $4,000 per year over 5 years, eating into his hard earned savings.

He urgently needed training on mobility and some low vision technologies such as magnifiers, a text reader and a CCTV (closed circuit TV) to enable him to maintain his independence and quality of life and to stay in his own home. His private insurance, as is the case for many private health insurers, did not provide any benefit for the $8,000 needed for this equipment or any training. No funding is available through the aged care system to provide these services or equipment. A low vision agency did not visit his town, and there are no other people with low vision expertise in town. Ted is therefore forced to travel to Sydney, staying for a week in a motel to receive training on the use of a white cane, an electronic magnifier and CCTV. Apart from some reimbursement for his travel costs, Ted pays for all the equipment and training.

Ted’s twin brother Tom, however is independently wealthy, married and lives in Perth. He also has MD but became legally blind at 64. He can now get a ‘one stop shop’ NDIS package for life with a simplified system for assessment and allocation of support. Tom receives this as an entitlement, to pay for magnifiers, a CCTV, a new computer with a big screen and ZoomText software to provide for quality of life and independence.

This scenario highlights the gross inequity of a system with an arbitrary cut off based on age.

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The NDIS should be a national disability insurance scheme for all Australians, including people aged 65 and over. The Macular Degeneration Foundation rejects the exclusion to the NDIS for people aged 65 years and over, and seeks amendments to the National Disability Insurance Scheme Bill 2012 so that all people who are blind or have functional vision loss, including people with macular degeneration, have access to equitable disability services and support and will not be disadvantaged on the basis of their age.

Recommendation 2:

The Macular Degeneration Foundation recommends the Commonwealth

Government guarantee access to and affordability of an equivalent level of disability supports and services for people aged 65 and over, if the NDIS excludes older Australians, through mechanisms that include aged care reform and enacting separate legislation.

The Commonwealth Government has indicated that disability support and services for people 65 and over are part of the aged care system. However, there was no evidence of this in the Living Longer Living Better aged care reform package.7 With no clear indication that disability supports and services for people aged 65 and over will exist in either the disability or aged care systems, it is of great concern that the majority of people with macular degeneration will not be able to access the assistance they need and ‘fall through the cracks’. If the Commonwealth Government does not consider the NDIS to be the relevant scheme to cover people with a disability aged 65 and over, then it should clearly inform stakeholders about the specific mechanisms that would be in place to support these people, whether this would involve further reforms to the aged care system, enacting separate legislation or other initiatives.

2. Obligations to the United Nations Convention on the Rights of Persons with

Disabilities

Recommendation 3:

The Macular Degeneration Foundation recommends that the National Disability

Insurance Scheme Bill 2012 be reviewed in its entirety to ensure that it fulfils all of the obligations that Australia has as a party to the United Nations Convention on the Rights of Persons with Disabilities.

The Objects of the Act, contained in section 3 of the National Disability Insurance Scheme Bill 2012 describe what the NDIS will be and what it will provide for people with disability, including people with macular degeneration. The Macular Degeneration Foundation is concerned that much of the draft legislation goes on to limit or dilute the commitments outlined in this section. The Macular Degeneration Foundation is concerned that section 3.1.h states that the NDIS will only give effect to “certain obligations that Australia has as a party to the United Nations Convention on the Rights 6

of Persons with Disabilities” (UNCRPD). The imposition of co-contribution payments based solely on the age of the person on the date of the first access request to the NDIS is discriminatory, inequitable and against the principles of the UNCRPD.8 It would be against Australia’s international interests, as one of its first actions since winning the seat on the UN Security Council, to enact an NDIS legislation that fails in its obligations to the UNCRPD. The Macular Degeneration Foundation is urging the Commonwealth Government to meet all of its obligations under the UNCRPD, to which it is a signatory, and to its national obligations as stipulated in instruments such as the Disability

Discrimination Act 1992.9

3. Integrating specialists into the NDIS assessment process Recommendation 4: The Macular Degeneration Foundation recommends the NDIS adopt a fundamental principle that persons with a disability must not be denied access to the NDIS purely on the basis of failing a generic assessment, and should be offered a specialist assessment before proceeding to the review process.

Recommendation 5: The Macular Degeneration Foundation recommends that specialist assessments be integrated into the NDIS assessment process.

The Macular Degeneration Foundation believes that for people who are blind or vision impaired, including people with macular degeneration, specialists should perform an integral role in the NDIS assessment process. Specialists are highly skilled individuals and organisations with extensive knowledge of specific disabilities, such as conditions resulting in vision impairment. Specialists can include medical eye health professionals like optometrists and ophthalmologists, and organisations that provide low vision services, such as Guide Dogs Australia, Royal Society for the Blind, Vision Australia, and others. The contrast in quality of outcomes between generic and specialist assessments is marked for people who are blind or vision impaired, as the NDIS generic assessment process has the potential to reject a person without considering their functional vision.

It is fundamental that persons with a disability must not be denied access to the NDIS purely on the basis of failing a generic assessment, and should be offered a specialist assessment before proceeding to the review process, as the review process can be costly and time-consuming. Furthermore specialists could provide assistance, at the request of applicants, to develop individual plans that determine the package of services and supports appropriate to the applicants’ needs. Diagram 1 illustrates the current generic assessment model proposed in the National Disability Insurance Scheme Bill 2012, and Diagram 2 illustrates the Macular Degeneration Foundation’s preferred 7

assessment model where specialist assessments play a key part in the assessment and review processes.

Diagram 1: Generic assessment model accepted Generic

NDIS Assessment

accepted rejected

Review by

CEO

accepted rejected

Review by

Administrative

Appeals

Tribunal

Diagram 2: Preferred assessment model

Generic                 accepted              Specialist

NDIS Assessment Assistance

(optional) rejected accepted

Specialist

Assessment

rejected accepted

Review by independent review body (Covered in section 5 of this submission)

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Utilising the expertise of specialists would be a more cost effective approach as there would be a reduction in the number of inaccurate assessments and ‘wrong judgement calls’ by generic assessors who may have little specialist knowledge of the disabilities they have to evaluate on a daily basis. The services provided for people who are blind or vision impaired vary greatly from those generally provided for people who have a profound intellectual or physical impairments. This is one of the primary reasons why the majority of generic assessments systematically fail to identify or meet the needs of people who are blind or vision impaired.

It must be highlighted that the functional capacity criteria in the NDIS rules (section 27 of the National Disability Insurance Scheme Bill 2012) do not complement the generic assessment process. Specialists can have more appropriate skills and experience to conduct assessments on functional impairment, and are already being utilised in other national programs, such as the Australian Disability Parking Scheme10 where a disability parking permit applicant has to have their functional capacity assessed by a medical practitioner as part of the application process.

Specialist assessments will result in less failed assessments that will need to be reviewed on appeal and less changes to individual plans as they would have been more accurately matched with the participants’ needs when they first access the NDIS.

Recommendation 6: The Macular Degeneration Foundation recommends that both specialist and generic assessment processes adopt a person centred approach to individualised planning.

The Macular Degeneration Foundation would like to stress the importance for both specialist and generic assessment processes to adopt a person centred approach to individualised planning. People who are blind or vision impaired should be empowered through person centred planning to develop a plan which is creative, flexible and most appropriate to their needs. This approach will go beyond traditional ways of thinking that assessors might impose on participants (for example only recommending specific supports that the assessor is familiar with) which could result in limited support options, or worse, inappropriate support services.

4. NDIS funding for low vision aids and technology Recommendation 7: The Macular Degeneration Foundation recommends that guidelines be drafted to ensure that NDIS participants will be able to access funding for low vision aids and technology (LVAT).

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Blindness and vision impairment significantly impact on the functional capacity of a person across all daily activities including, but not limited to, mobility, communication and self-care. Without a specialist assessment, a person who is blind or vision impaired could be made to receive substantial Home and Community Care (HACC) services or even residential care to meet their needs, when the relatively more inexpensive and enabling option of low vision aids and technology (LVAT) would have been more appropriate. Contrary to services that support people with profound intellectual and physical impairments, which appear to be the primary target group for the NDIS, personal support or residential care are rarely effective or preferred solutions for people who are blind or vision impaired. These ‘solutions’ can be expensive and ineffective in restoring a person’s capacity to function at an independent level within their community, resulting in continuing dependence on services and limiting community participation, which are contrary to the objectives of the NDIS.

For example, without extensive knowledge of the impact of vision impairment and the services available to meet the needs of persons who are blind or vision impaired, a generic assessment could recommend that regular personal care support be provided to read the person’s mail. It would be more appropriate to recommend LVATs, such as an optical or electronic magnification device, and associated training which would allow the person to access online and printed material independently. It must be highlighted that many LVATs have upfront costs that are expensive for people with vision loss living on the pension, and this is the reason they need government assistance through the NDIS. However providing LVATs would save money for the Commonwealth Government as this cost would only be a fraction of the ongoing costs associated with providing long term HACC support services.

CASE STUDY

Eve was admitted to hospital with acute vision loss that left her functionally blind. Hospital staff using a generic assessment process, combined with an urgency to make another hospital bed available, determined that Eve should be placed in high needs residential accommodation on a permanent basis, particularly as she had no immediate family support available.

Funding approval had been obtained and an Australian Blindness Forum (ABF) member was asked to transition Eve into high needs residential care. On initial investigation by the ABF member, it was determined that Eve’s preferred option was to continue living in her own home.

Despite opposition from hospital staff, a specialist assessment was conducted with Eve in her own home. This assessment immediately demonstrated Eve’s capacity to live independently with minimal ongoing support. An enablement program was provided, 10

entailing skill development in mobility (eg use of a long cane) and instrumental activities of daily living (eg safe preparation of food, independent shopping, and general skills and safety in the home).

Eve was returned home and received a program of instruction over approximately six weeks. At the conclusion of the program, Eve was successfully undertaking all household duties, including developing her cooking skills and travelling independently in her local environment.

Eve subsequently received support to extend her independent mobility skills to include travelling to a local shopping centre and shopping independently. Eve now receives minimal ongoing HACC support to assist with cleaning.

Despite the fact that funding was approved for Eve to move to high needs residential care for the rest of her life at approximately $100,000 (or more) per annum, no funding was available for the training provided by the ABF member that enabled Eve to remain in her own home and maintain her independence. Had Eve been admitted to residential care, she would have been assessed as being a high falls risk and been forcibly limited in the scope of her independent activities.

At only 50 years of age, residential care would not have been the appropriate or preferred place for Eve to live for the rest of her life.

5. Independent review body Recommendation 8: The Macular Degeneration Foundation recommends that an independent review body be established to review decisions and resolve complaints in a way that is truly independent and accessible.

The Macular Degeneration Foundation believes that the internal review process proposed in section 99-103 of the National Disability Insurance Scheme Bill 2012, where the NDIS CEO reviews a decision made on behalf of the CEO’s authority, is not a transparent review mechanism that holds sufficient independence to provide assurance to persons seeking a review of decisions. The proposed next step of going to the Administrative Appeals Tribunal (AAT) does not provide reasonable ease of access without undue burden on complainants. The Macular Degeneration Foundation believes a review body completely independent from the funding agency is essential.

An independent review body may provide a faster and more efficient review mechanism that is less arduous on applicants and as it would be disability specific for the NDIS,

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would provide some assurance of decisions having due respect to the nuance of disability issues.

The National Disability and Carer Alliance conducted a series of consultations involving over 2,000 people with disabilities, families and carers and service providers in the second half of 2012. A summary report was provided outlining the issues raised and a section on ‘Reviews and Complaints’ outlined that the reviews and complaints system must focus on individual issues, needs and outcomes.11 Furthermore, the review process should:

• Consist of a review body completely independent from the funding agency.

• Address issues in a timely manner.

• Allow the opportunity to involve independent support persons, perhaps including a system of lay advocates.

• Have the ability to enforce its rulings.

• At no cost, without lawyers, be welcoming with a variety of venues for hearings. The process and results need to be widely publicised.

• Require a defined framework including: how to use it and what to expect.

• Include a process to ensure systems change based on feedback for all parties based on learnings from reviews and complaints.

6. Standards and accreditation Recommendation 9: The Macular Degeneration Foundation recommends that standards and accreditation guidelines be developed for the low vision sector, to ensure high quality services and equipment for people who are blind or vision impaired following the launch of the NDIS.

The Macular Degeneration Foundation is concerned with the current lack of standards and accreditation of low vision services and equipment. Currently, there is wide variation in the scope and quality of services available for people who are blind or vision impaired. This variation is likely to increase following the deregulation of disability services brought about by the NDIS. It is most likely that with increased market freedom and competition, new and existing providers will be offering services that focused on reduced cost. However, there is the risk that service and equipment quality will suffer as providers shift their focus from consumer outcomes to financial outcomes. The Commonwealth Government must require the development of standards and accreditation guidelines for the low vision sector to ensure an appropriate minimum standard for existing services and to ensure the quality of new services.

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7. NDIS impact on philanthropy Recommendation 10: The Macular Degeneration Foundation recommends that the Commonwealth Government take action to ensure the sustainability of the low vision sector following the launch of the NDIS, including running awareness campaigns to encourage philanthropy and increasing funding for low vision organisations.

The Productivity Commission, in its inquiry into Disability Care and Support,12 failed to acknowledge or incorporate the critical contributions of philanthropy into their econometrics when designing the NDIS. This issue has greater relevance with the low vision sector, where organisations are significantly dependent on philanthropy (including volunteering, donations, sponsorships and bequests) to provide services, as opposed to a primary reliance on funding from governments. Other growing pressures on the sector include,

• the potential reduction in philanthropic support following the introduction of the NDIS;

• a lack of certainty regarding NDIS eligibility of people aged under 65 who are blind or vision impaired;

• the current exclusion from the NDIS of people aged 65 and over who are blind or vision impaired; and

• an aged care system that has not been able to effectively meet the needs of people aged 65 and over who are blind or vision impaired.

The Macular Degeneration Foundation is concerned that the NDIS will pose a significant threat to philanthropy towards the low vision sector and to services provided to people aged 65 and over who are blind or vision impaired, especially if they are excluded from access to funded NDIS supports. It is anticipated that the introduction of the NDIS will create a reduction in philanthropy for the disability sector, particularly low vision organisations. There would not be an incentive or motivation for the community to donate their time and money when the overwhelming public perception is that an NDIS will cover all the needs of people with disability. This is a perception that is expected to be strongly reinforced as the Commonwealth Government seeks to gain increasing support for the scheme.

With philanthropy and non-government revenue (including investment and private sponsorship) as the primary sources of funding, low vision organisations will increasingly operate under growing pressure with increasing referral rates, lack in government funding, global financial uncertainty and a crowded Not-For-Profit sector. The Commonwealth Government must be aware of these concerns and take substantive actions to ensure the sustainability of the low vision sector. 13

Conclusion

The Macular Degeneration Foundation would like to thank the Senate Standing Committee on Community Affairs for the opportunity to provide feedback on the National Disability Insurance Scheme Bill 2012.

Yours sincerely,

Julie Heraghty

Chief Executive Officer

Macular Degeneration Foundation

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Background Information

About Macular Degeneration

Macular Degeneration (MD) is a progressive, chronic disease of the macula (central retina) at the back of the eye. Macular Degeneration leads to a loss of central vision, affecting the ability to read, drive, recognise faces and perform activities requiring detailed vision.13 Macular Degeneration is a chronic disease with no cure. 14 It is also known as Age-related Macular Degeneration (AMD). Macular Degeneration affects central vision and does not produce total or black blindness.

Facts and figures Macular Degeneration is the leading cause of blindness and major vision loss in

Australia15,16

50 per cent of all blindness* is due to Macular Degeneration The prevalence of Macular Degeneration increases with age The prevalence of Macular Degeneration is 4 times that of Dementia and more than half that of Diabetes. 17 Approximately 1 in 7 Australians over 50 (1 million people) have some evidence

of Macular Degeneration18

The number of people with some evidence of Macular Degeneration will increase by 70 per cent to 1.7 million by 2030, in the absence of effective prevention and treatment measures. In 2010 12 per cent of people over 50 yrs (856,000) had early signs of Macular

Degeneration

In 2010 2 per cent of people over 50 yrs (167,000) had late stage Macular Degeneration which included 57,000 with Dry Macular Degeneration and 110,000 people with Wet Macular Degeneration Over 14 per cent of people over 80 yrs (123,000) have vision loss or blindness

from Age-related Macular Degeneration19,20

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Prevalence of some key chronic diseases in Australia21,22,23,24 2.0 1.8 1.6 1.4 1.2 1.0 0.8 0.6 0.4 0.2 0.0 (Millions)

Persons

Macular Degeneration prevalence includes25: 856,000 people with early disease 167,000 with late disease (vision impairment) Diabetes prevalence includes an estimated 800,000 who are undiagnosed26.

Causes of blindness in Australia27

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Cost of Macular Degeneration in Australia

The total cost of vision loss associated with Macular Degeneration was estimated at approximately $5 billion in 201028.

The socio-economic impacts of Macular Degeneration include lower employment rates, higher use of services, social isolation, emotional distress and an earlier need for nursing home care29.

The impact of Macular Degeneration on quality of life is equivalent to cancer or coronary heart disease30.

Visual impairment prevents healthy and independent ageing and is associated with the following31: Risk of falls increased two times Risk of depression increased three times Risk of hip fractures increased four to eight times Admission to nursing homes three years earlier, on average Social independence decreased two times

Stages of Macular Degeneration32

Early - 12 per cent of people over 50 yrs (856,000) Normally there are no symptoms, but at risk of progression. There is the presence of lipid deposits (“drusen”) on the retina. Progression can be slowed through diet and lifestyle modifications.

Late - 2 per cent of people over 50 (167,000) rising to over 14 per cent of people over 80 (123,000) “Dry” (57,000) - atrophy of retinal tissue, normally producing gradual loss of central vision. Currently no treatment, but can be slowed through diet and lifestyle changes. “Wet” (110,000) - formation of leaky blood vessels under retina, typically producing rapid loss of central vision. A highly effective treatment (anti-VEGF injections) is now available. Early treatment produces best outcomes. Diet and lifestyle changes can also slow progression.

Risk factors The rate of Macular Degeneration increases dramatically with age Macular Degeneration is not an inevitable consequence of ageing 50 per cent risk of developing Macular Degeneration if a direct family history is present Up to 70 per cent of cases have a genetic link 3 to 4 times the risk of Macular Degeneration if you smoke Smokers get Macular Degeneration 5 to 10 years earlier, on average 20 years after quitting, an ex-smoker’s risk is the same as someone who has never smoked.

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Key messages Have your eyes tested and macula checked Do not smoke Keep a healthy lifestyle, control your weight and exercise regularly

• Eat fish 2 to 3 times a week
• Eat dark green leafy vegetables and fresh fruit daily
• Choose low glycemic index carbohydrates
• Eat a handful of nuts a week. Consider a suitable supplement in consultation with your doctor Protect your eyes from the sun Use an Amsler grid for checking for symptoms of Macular Degeneration Seek immediate attention from an eye care professional if there are any sudden changes in vision.

The Macular Degeneration Foundation

The Macular Degeneration Foundation is a charity established in 2001 and is the only national charity committed to working on behalf of the entire Macular Degeneration (MD) community.

Clients include patients, families and carers and people at risk of developing Macular Degeneration. The Foundation also serves healthcare professionals, providing them with professional development, information and resources.

The vision of the Foundation is to reduce the incidence and impact of Macular Degeneration in Australia through five major objectives:

• Education: Provide accurate, specific, current and ongoing information

• Awareness: Increase awareness of Macular Degeneration

• Support services: provision of support to clients and facilitation of access to relevant support

• Research: Support and pursue research

• Representation: Advocate for the best interests of the MD community Leading the way In 2011 the Macular Degeneration Foundation produced a major Deloittes Access Economics Report titled Eyes on the Future - A clear outlook on Age-related Macular Degeneration. The report was co-authored with Australia’s Professor Paul Mitchell, one of the world’s leading retinal specialists and researchers. It is the most comprehensive report on AMD in Australia ever undertaken and is now used as the authoritative source in this country. It establishes the need for the work undertaken in education, awareness, diagnosis, treatment and rehabilitation for AMD.

The Foundation is now recognised as a world leader in raising awareness and recently had a paper describing its work published in the prestigious American Journal of Public Health33. The Foundation has also been invited to present its work in public health prevention at various international events.

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End notes

1 Deloitte Access Economics (2011). Eyes on the future: A clear outlook on Age-related Macular Degeneration. Barton: Deloitte Access Economics and Professor Paul Mitchell. 2 Ibid. 3 Taylor H et al, MJA 2005;182:565-568. 4 Deloitte Access Economics (2011). Eyes on the future: A clear outlook on Age-related Macular Degeneration. Barton: Deloitte Access Economics and Professor Paul Mitchell. 5 Ibid. 6 Productivity Commission (2011). Disability Care and Support, Report no. 54, Canberra. 7 Department of Health and Ageing (2012). Living Longer Living Better. Canberra. 8 United Nations (2007). Convention on the Rights of Persons with Disabilities. 9 Disability Discrimination Act 1992 (Cwlth) 10 www.disabilityparking.gov.au, accessed 25 January 2013. 11 National Disability and Carer Alliance (2013), Summary Report-Key Issues Raised in the Alliance NDIS Community Engagement Project. 12 Productivity Commission (2011). Disability Care and Support, Report no. 54, Canberra. 13 Deloitte Access Economics (2011). Eyes on the future: A clear outlook on Age-related Macular Degeneration. Barton: Deloitte Access Economics and Professor Paul Mitchell. 14 Ibid. 15 Ibid. 16 Taylor H et al, MJA 2005;182:565-568. 17 Deloitte Access Economics (2011). Eyes on the future: A clear outlook on Age-related Macular Degeneration. Barton: Deloitte Access Economics and Professor Paul Mitchell. 18 Ibid. 19 Ibid. 20 Mitchell P et al, Ophthalmology 1995;102:1450-1460. 21 Deloitte Access Economics (2011). Eyes on the future: A clear outlook on Age-related Macular Degeneration. Barton: Deloitte Access Economics and Professor Paul Mitchell. 22 www.msaustralia.org.au/aboutms-faq.asp, accessed 1 March 2012. 23 www.alzheimers.org.au/understanding-dementia/statistics.aspx, accessed 1 March 2012. 24 www.diabetesaustralia.com.au/PageFiles/1615/the per cent20facts per cent20DA per cent20FINAL per cent202011.pdf, accessed 1 March 2012. 25 Deloitte Access Economics (2011). Eyes on the future: A clear outlook on Age-related Macular Degeneration. Barton: Deloitte Access Economics and Professor Paul Mitchell. 26 www.diabetesaustralia.com.au/PageFiles/1615/the per cent20facts per cent20DA per cent20FINAL per cent202011.pdf, accessed 1 March 2012. 27 “Clear Focus - The Economic Impact of Vision Loss in Australia in 2009”. Report by Access Economics and Vision 2020. 28 Deloitte Access Economics (2011). Eyes on the future: A clear outlook on Age-related Macular Degeneration. Barton: Deloitte Access Economics and Professor Paul Mitchell. 29 “The Global Economic Cost of Visual Impairment”, Access Economics & AMDAI 2010. 30 Ibid. 31 Ibid. 32 Deloitte Access Economics. (2011). Eyes on the future: A clear outlook on Age-related Macular Degeneration. Barton: Deloitte Access Economics and Professor Paul Mitchell. 33 Heraghty J & Cummins R, Am J Public Health 2012;102:1655-1659.

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