NDIS Call to Action

Underlying principles Cystic Fibrosis Australia (CFA) affirms the right of people living with CF to a lifetime of care and support that meets their individual needs - irrespective of where they live, their personal support networks or choice of provider. Services and funding must be capable of  Adapting to episodic and progressive changes.  Providing early intervention, preventative and ongoing quality of life support.  Ensuring seamless referrals and the ability to fast track services within and between the disability, health and community sectors, and the social security system.  Recognising that quality of care requires specialist skills and an evidence base that must be reflected in the design of the service system, among service providers, and in the community.  Acknowledging and respecting that chronic disease can result in forms of disability that are not apparent to the casual observer but which require support and can severely limit a person’s capacity for employment and education.

CFA understands that the term ‘disability’ has negative connotations for many people. Its use in this and other documents is a response to current legislation and policy frameworks. It is not intended to define or label people in any way.

Calls to action CFA congratulates the Commonwealth, State and Territory Governments and the Productivity Commission for recognising the need for substantial reform of the disability and related health sectors. For people with CF, the National Disability Insurance Scheme (NDIS) framework must also provide

Guaranteed access and seamless pathways irrespective of age, changing health status or the service setting. This is essential to the continuity of care and supply of services and equipment.
National guidelines, protocols and agreements that establish and coordinate referrals among multidisciplinary teams across the health, community and disability sectors and reflect holistic personal-centered care.
A sustainable and accountable role for not-for-profit Disability Support Organisations like CFA in the provision of trusted, local and condition specific case management, counselling and information services. A sector underpinned by expert not-for-profit DSOs will continue to provide independent advice on system design, policy and service quality.
Inclusion of the full range of equipment, devices, parts and servicing for nebulizers, oxygen saturation machines, mouthpieces, inhalers etc.
Inclusion of non-PBS medicines, dietary and other supplements.
Inclusion of travel and accommodation allowances to attend specialist clinics.
Needs assessment and support services for carers.
Inclusion of preventative services such as exercise programs and equipment.