While it's true that people with CF are currently finding it difficult to access the NDIS, we are optimistic that our campaign will help to change this. The reason people with CF are finding it difficult to access the NDIS is probably due to a false belief among assessors that CF as a ‘medical condition’ rather than a disability. The reality is that CF is both a medical condition and a disability. Explaining how CF impacts your function is key.
NDIS explained for CF People with CF aged between 7 and 65 years living in Australia are likely to meet NDIS eligibility requirements because cystic fibrosis is a permanent and significant disability; permanent because it is genetic and incurable, significant because it causes significant and irreversible damage to the lungs, pancreas, liver, digestive system and sinuses. Note: Lung transplants are not considered a cure as they don’t significantly change the scope of burden for someone with CF.
Do you use special equipment because of a permanent and significant disability? Yes, many people with CF use special equipment (e.g. nebuliser, physiotherapy devices, sinus clearance devices). As the disease progresses, people with CF often require additional special equipment such as BIPAP/CPAP machines.
Do you usually need support from a person because of a permanent and significant disability? Yes, as the disease progresses, people with CF usually need support from a person because of a permanent and significant disability. Currently, the burden of care falls on family members and partner.
Do you need some supports now to reduce your future needs? Yes, all people with CF need support now to reduce future needs. While CF is a degenerative condition, rate of deterioration can be significantly reduced by early intervention; support to adhere to treatment plans and minimise exposure to airborne irritants (dust/fumes) and airborne infectious agents (bacteria/fungi).
4. What kinds of supports and services can NDIS provide for cystic fibrosis?
Supports and services are “assistance or products that help a person in their daily life and help them participate in the community and reach their goals”.
Here are some examples of supports and services we think people with CF will be able to access through an NDIS plan:
Weekly domestic help (eg up to 2h for cleaning, changing linen, hanging out washing)
Transport budget (because we may not be able to use public transport/drive)
Gardening maintenance (because exposure to soil etc can be an infection risk/we may be too fatigued)
CF-related Psychology sessions (out of pocket costs)
CF-related Physiotherapy sessions (out of pocket costs)
CF-related Exercise physiology/personal training
CF-related Dietics consultation
Specialist equipment like
nebuliser
CPAP
BIPAP
read more about disability-related health supports covered by the NDIS here.
5. I'm currently receiving Mobility Allowance (MOB). Will I lose my health care card if I apply for the NDIS?
This is how it works. If you are receiving MOB, when you get accepted to the NDIS, they automatically notify Centrelink and the mobility allowance (ie the money you receive) is automatically cancelled (because you'll get a transport budget with your NDIS plan). However, “If a customer’s Mobility Allowance is cancelled due to becoming a participant in NDIS, the customer remains entitled to receive a HCC. The HCC automatically reissues every 12 months to the customer unless the NDIS advises they are no longer a participant with NDIS.
If you have NDIS and then apply for MOB you will automatically be rejected. So apply for MOB BEFORE applying for NDIS.
MOB pays between $2,587 - $3,616 per year depending on your level of support. The standard NDIS transport budget pays between $1,606 and $3,456 per year depending on your level of support.
6. How do I apply for access to the NDIS?
There are three ways to initiate the process.
call the NDIS on 1800 800 110 and ask to make an Access Request