A year ago, our community was celebrating the inclusion of health-related supports in the National Disability Insurance Scheme (NDIS). This was a great step forward and recognition of the gaps in health and disability related supports.

Cystic fibrosis is a life-long, debilitating, incurable disease. People live with permanent and increasing functional impairment. While many people living with cystic fibrosis score highly on the NDIS eligibility list, if they qualify for support, it is not because of the condition of cystic fibrosis but rather the health impediments that develop from living with the condition.

The health system does not provide early intervention supports to allow people with cystic fibrosis to proactively manage their disability, it does not assist with the significant out-of-pocket costs borne by people with cystic fibrosis to adhere to their treatment regime nor does it help people with cystic fibrosis mitigate the debilitating consequences of living with cystic fibrosis.

In addition, not all NDIS assessors are knowledgeable about cystic fibrosis and therefore the assessments process is inequitable. A Trained Assessor Unit with a solid understanding of rare diseases like cystic fibrosis is needed to support the increasing number of people being born with the disease.

The level of disability, or ability, that cystic fibrosis creates varies greatly from person to person. Cystic fibrosis is an invisible disease that manifests in a variety of ways and while no two sufferers will show the same symptoms at the same time – all are living with a disease which is a financial, emotional and physical burden.

Currently, people living with cystic fibrosis only qualify for the NDIS when they develop severe lung disease and for many this is often when they are at end of life stage and/or awaiting lung transplant.

There is no cure for cystic fibrosis. NDIS support would provide access to the treatments and therapies which serve to slow the speed of this degenerative disease.

The cystic fibrosis community is respectfully requesting for three amendments to the NDIS:

1. Add cystic fibrosis the NDIS List A.

2. Close the gap between health-related supports and eligibility for NDIS funded supports.

3. Establish a Trained Assessor Unit to ensure equitable assessments for people with rare diseases, like cystic fibrosis.