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Submission SUB-Z9J9-000963 (Keratoconus Australia )

Submission reference
SUB-Z9J9-000963
Individual's name
Larry Kornhauser OAM
Organisation
Keratoconus Australia
Submission type
General submission
What are your three main problems or concerns with the NDIS?

1 Keratoconus Australia is concerned that the NDIS does not currently recognise the eye disease keratoconus as a disability. This is despite the fact that keratoconus can cause progressive and severe vision impairment starting in adolescence.
2 NDIS rarely provides funding for the complex and expensive contact lenses required to restore vision to people with keratoconus and even when it does, it requires patients to endure a convoluted procedure to prove the level vision impairment
3 Based on feedback from patients, optometrists and ophthalmologist, there are currently no consistent NDIS criteria for disadvantaged patients with keratoconus to access funding for visual corrective devices such as contact lenses.

How do these three main problems affect you and/or others?

The current NDIS system generally fails to provide any financial support to people with moderate to severe vision impairment from keratoconus who require expensive specialised contact lenses to restore their vision. These lenses cost upwards of $300-400 each ($600-800 a pair). The latest semi-scleral lenses being used widely today cost $1000-1500 each ($2000-3000 a pair). All these lenses may need to be replaced several times a year if the person's disease is progressing. Even a person with stable keratoconus will need to change these lenses due to wear and tear every 1-3 years (depending on the type of lenses and their care level).
The current system assumes that financially-disadvantaged people with keratoconus requiring these complex contact lenses and who cannot afford them can access them through public eye clinics. This may be true in the largest capital cities with either dedicated eye hospitals or teaching clinics. However in both cases, it is still difficult for a patient to see an expert fitter of speciality contact lenses for keratoconus. A poorly-fitted lens can cause further damage to a fragile, keratoconic cornea. Hence the need for patients to consult the most highly experienced contact lens fitters rather than just any optometrist. In most other areas outside these capital cities or in cities without public eye or teaching clinics, there may be no access to publicly-funded speciality lenses for keratoconus and/or contact lens fitters in public clinics to fit them correctly.
In those cases, patients need to fund the full cost their own contact lenses which must be fitted by contact lens fitters in private practice. Even those with private health cover would barely be subsidised for anything more than one of the most basic contact lens for keratoconus
A 2021 study by the Centre for Eye Research Australia showed that a typical keratoconus patient spends 30 times more than the average Australian on eye health. Keratoconus Australia estimates that patients with moderate, progressive keratoconus would be paying even more.
Sadly we know of cases of young adults who cannot afford the ongoing cost of these speciality contact lenses seeking and obtaining NDIS funding as low vision disabled persons. This, despite the fact that these contact lenses could provide them with acceptable vision.
Clearly it makes no sense for NDIS to pay ongoing life-long subsidies to visually disabled persons whose vision could be restored by a relatively low cost rehabilitative medical device like a speciality contact lens.

What do you think are possible solutions to those problems?

New Zealand and the United Kingdom both recognise that people with keratoconus are better off seeing expert contact lens fitters rather than just any optometrist in a public health clinic and provide patients with subsidies to enable them to access their lenses via the most capable eye-carers. These systems provide patients with an agreed subsidy to enable them to consult the best practitioner in their local area.
This principle is the same that underlies NDIS funding for other forms of disability requiring medical devices. Keratoconus Australia believes it should be extended to persons unable to wear spectacles for keratoconus and who require corrective lenses beyond a certain agreed power.
As such, these lenses should be considered a rehabilitative medical device like a hearing aid. Complex contact lenses for keratoconus enable an otherwise visually-disabled person to resume fairly normal activities. This may include continuation of studies, workforce participation, participation in family carer roles and community activities. All of these activities enable people with keratoconus to contribute to society and pay taxes rather than become a burden to governments and taxpayers. Studies have repeatedly shown that communities recoup 5 times the cost of their investment in correcting vision impairment in their populations.
There are therefore compelling reasons for NDIS to include vision impairment from keratoconus in it funding schedule and to provide financial support to disadvantaged patients able to wear rehabilitative contact lenses.

What parts of the NDIS are working well for you?

Support for low vision persons with keratoconus suffering irretrievable vision loss

Is there anything else that you would like to tell the NDIS Review?

There is increasing evidence that people with keratoconus suffer a lower quality of life than those with retinal disease (Save Sight Keratoconus Registry 2022). Other studies show that the prevalence of keratoconus is higher than previously thought (perhaps as high as 1 in 84 according to a CERA 2019 study). There are therefore compelling reasons to urgently reconsider the role of the NDIS in supporting people with keratoconus.