This White Paper was commissioned by Rare Voices Australia, on behalf of partner organisations and people living with rare disease, to inform their ongoing advocacy efforts for equitable access to high quality services for all people living with a rare disease. The paper was also timed to be able to inform the development of the National Strategic Plan for Rare Diseases.
In developing the White Paper, we held consultations with stakeholders, conducted a nationwide survey of people with a rare disease and their carers and reviewed the international literature on the provision of health and disability care services.
In undertaking the first national survey of people with rare diseases on access to health and disability services, we aim to give people that are often not heard or understood a voice. They have told us the current system is not meeting their complex health and disability care needs.
The evidence collected highlights very high levels of unmet need for health and disability care services and significant gaps in the policy framework in providing integrated care across the health and disability care services.
Our recommendations are focused on reforms which would deliver integrated care for those with health and disability care needs, improve the understanding of rare diseases by health and disability care workers and ensure that the systems can respond to the changing needs of people with rare diseases that are complex and sometimes difficult to predict.
- Australia develops, endorses and implements a rare disease strategy.
- Australia establish a model of rare disease centres of excellence to address knowledge gaps and ensure all Australians with a rare disease have access to the best evidence-based care.
- Australia introduce personal care plans to cover an individual’s health, education and disability care needs. These overarching integrated care plans would allocate responsibility for the delivery of services to specific levels of government.
- The Government centralise existing information on rare disease with a searchable data base of information on rare diseases which health and disability professionals, patients and families, can access and inform.
- Introduce mandatory training of relevant health and disability care professionals on the nature of rare diseases, effective management strategies, how to locate information and referral pathways to support and advocacy groups.
- Urgent review of delays in access to equipment to ensure that NDIS participants receive approved equipment in a timely manner.
- NDIA to 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.