Cystic Fibrosis Community Care Submission
CYSTIC FIBROSIS NDIS - Independent Assessment and Access
The Cystic Fibrosis Community Care (CFCC) provides support to 1,724 adults and children living with cystic\fibrosis plus their families, schools, colleagues and friends throughout New South Wales and Victoria.
cystic fibrosis is the most common genetic life limiting condition in Australia. It is a life long and a degenerative condition that: a. Affects the functioning of multiple organs in the body.\b. Contributes to poor mental health and psycho-social function.\c. Can result in significant social isolation.\d. Can severely impact ability to work, study and independent living capacity.\e. Can result in chronic extreme fatigue \f. Requires a multi-disciplinary medical and allied health team and often multiple hospitalisations each year.
cystic fibrosis is often described as an invisible condition that manifests differently in every person that hascystic fibrosis.
cystic fibrosis meets all the requirements listed by the NDIA for a person to qualify for NDIS support.
our Items of Concerns and Request
in dependent Assessors need to be specifically trained in the complex nature of disability associated with cystic fibrosis. it is essential that Ndis Independent assessors are knowledgeable about the complexity of functional disability associated with cystic fibrosis for it to be equitable for applicants. The level of ability, or disabilityand impairment, that people experience living with cystic fibrosis varies greatly.
ou recommendation is the ndia partner with cystic fibrosis specialists to inform the training of the\independent assess ors.
cc community members have reported having to submit and appeal ndis access decisions multiple times before being successfully acknowledged as ndis participants. This is often due to cystic fibrosibeing wrongly assessed as simply a medical condition – with no associated life long functional disability. There has been a concerning lack of insight and knowledge with regard to the complexities of livingwith cystic fibrosis.
ine the past, assessors have viewed cystic fibrosis as a treatable disease, which implies a cure. there is no curefor cystic fibrosis.\n as cystic fibrosis progresses in the life time of a person, their functional disability increases.(similarlyto other conditions such as multiple sclerosis).\n the nature of disability associated with cystic fibrosis is complex, and often includes the co-morbidityofother conditions. Whilecysticfibrosis alone affects a persons’ability to functioninmultiple ways, whencombined with other comorbidities,thefunctional ability ofthepersonlivingwithcysticfibrosi sliving within multipleconditionsisgreatly magnified.
Independent Assessments
Submission 266
- If an NDIS participant has concerns about how their independent assessment was conducted, the issue lies in limited clarification regarding appealing said assessments.
The matter holds particular significance within the Cystic Fibrosis Community due to past experiences involving exclusions & misunderstandings concerning this condition—resulting in denials from accessing services provided through National Disability Insurance Scheme (NDIS). It’s imperative we ensure accessibility across everyone who may have questions related thereto.
- Further details pertaining towards tools utilized during evaluations alongside processes employed when conducting interviews are requested; additionally clarity needed on budget allocation methods following these interactions.