There is strong evidence of very high levels of an unmet need for disability healthcare services for people with rare disease, according to a national survey.
A White Paper commissioned by Rare Voices Australia also showed there were significant gaps in the policy framework when it comes to providing integrated care.
It recommended an urgent review into the delays for accessing equipment to ensure that NDIS participants received approved equipment in a timely manner; and that the National Disability Insurance Agency (NDIA) incorporate a ‘fast tracking review’ category for people with rare diseases who have been identified as having permanent and significant disability. This would allow quicker access to additional supports when required through consultation with clinicians.
Diseases are considered ‘rare’ when they affect less than five in 10,000 Australians and almost two million live with a rare disease, more than the number of people living with diabetes, which is a key government health priority.
The report found the existing disability support system has proven unable to consistently meet the needs of these people. And while the NDIS has led to major improvements in support for many Australians living with disability, it is still a nascent institution with obvious deficits.
One such deficit has been the inability of the NDIS to offer the support required by those experiencing disability as a result of rare disease. One third of respondents to the survey experienced deterioration in the support they received under the NDIS; and many incurred significant out-of-pocket costs just to receive basic needs. Respondents also reported that NDIS planners and coordinators often lacked vital expertise to offer the support required.
In order to address the high level of unmet needs and the lack of knowledge and expertise around rare diseases international approaches to delivering person centered care were also examined. A majority of countries studied have developed and are implementing rare disease plans and strategies covering access to services, early diagnosis and research.
A key pillar in these strategies is the establishment of specialist centres for rare disease to provide disability and health care providers with up-to-date information on individual rare diseases and inform best care pathways. In some countries the delivery of services is supported by specific policies to better integrate care for people that require both health and disability care services, including the use of a single individualised planning process.
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