Policy & Campaigns
The Council works to influence public policy & service provision to improve the lives of people living with a genetic condition.
The Council draws on the experiences of our members, service providers, carers & families as well as the expertise of our staff & board to respond to Government consultations, initiatives & legislation.
This section of the our website contains our policy/position statements as well as all our responses to key consultations which have been developed to ensure that the patient voice is heard in the healthcare debate.
Our policy initiatives are aimed towards:
- Creating and preserving a well regulated environment for innovative research in the field of cures and treatments for inherited conditions to flourish.
- Ensuring the needs of patients and families affected by inherited conditions are understood and considered in the process of healthcare policy formation.
- Promoting good practice in the care and treatment of patients affected by inherited conditions in Western Australia.
- Meet with key decision makers within government to influence change.
Public Consultation on the Assessing the Direct-to-Consumer (DTC) Genetic Testing of your Patient
Closes 9 November 2012 at 5PM AEDST
The National Health and Medical Research Council has released the Assessing the direct-to-consumer (DTC) genetic testing of your patient – a quick guide for general practitioners for public consultation. You are invited under paragraph 13(d) on the National Health and Medical Research Council Act (1992) to make a submission to the NHMRC.
Additional Information: http://www.nhmrc.gov.au/_files_nhmrc/publications/attachments/ps0004_dna_direct_to_consumer.pdf
National Disability Insurance Scheme
The Australian Government has released the Productivity Commission’s report into long-term care and support for Australians with disability.
In February 2010 the Government commissioned an Inquiry into a long-term care and support scheme for people with disability in Australia.
The Productivity Commission found that the current disability support arrangements are "inequitable, underfunded, fragmented and inefficient and give people with disability little choice".
The report recommends a National Disability Insurance Scheme to provide all Australians with insurance for the costs of support if they or a family member acquire a disability. It also recommends a National Injury Insurance Scheme to provide no fault insurance for anyone who suffers a catastrophic injury.
Further Information Available: www.ndis.gov.au