CF and the NDIS
The National Disability Insurance Scheme is profoundly changing the way people access and receive support services. This article takes a look at the implications of the NDIS for people living with cystic fibrosis.
In 2013 the Government passed the legislation to implement the NDIS. It is profoundly changing the way people access and receive support services and it will affect the Healthcare Card, Mobility Allowance and Homecare services.
Cystic fibrosis is formally recognised as a disability however it has been left off the lists which would ensure people are entitled to have their needs assessed and, potentially, have access to services funded by the Scheme. Omitting CF is an infringement of the rights of people with CF to automatic assessment and its means there is a need to provide extensive supporting paperwork to prove entitlement. The paperwork must outline the impact of CF on the person’s “functionality and participation” and the applications for an assessment are easily declined.
CFNSW is leading the national advocacy campaign to have CF included in the NDIS Guidelines and recognised as a permanent impairment with variable impact on functional capacity.
The NDIS will eventually replace all Commonwealth and most State based support services. It will be a universal system across Australia, similar to Medicare. It is intended to provide individualised support and to give people more control over the types of services they receive, and who provided those services. This is intended to increase competition and improve service quality.
The Hunter region was one of the first trial sites for the NDIS. This has provided the CFNSW services team with extensive, first-hand experience of the Scheme and its implications for people with CF. Since then the Blue Mountains and other regions in NSW and the ACT have been included.
National rollout will begin on 1 July. You can find more details on the roll out sites and timeframes on the NDIS website http://www.ndis.gov.au/about-us/our-sites/nsw
Anyone currently receiving Commonwealth or State-based services and supports will continue until they apply and are assessed for a plan under the NDIS. If you are not currently receiving disability support you can apply to access the NDIS from 1 July.
We strongly recommend you contact CFNSW for advice before making an application.
There are two steps to accessing support under the NDIS. The first is to become a participant and then to make an access request that will be considered against the eligibility criteria:
The NDIS has published an operating guide which provides two lists of conditions:
CF should have been included on List B. This would have meant automatic participation and the right to present your individual case to an assessor, even though an assessment does not guarantee that you would receive a support package.
The CFNSW social workers have worked with adults, families and the teams at the John Hunter Hospital and the John Hunter Children’s Hospital understand the NDIS and support clients with their application process. The experience has highlighted the challenges and limitations of the NDIS for people with cystic fibrosis. In addition to the time commitment and documentary evidence that’s required we have identified a significant education gap among the NDIS staff who make the decisions about what supports are required. We are exploring the development of an education package that will address this and would make the resource available nationally.
Some services that are potentially beneficial for someone with CF, for example in-home airway clearance/physiotherapy, are not currently funded by the NDIS. This demonstrates the lack of understanding about the unique impact of cystic fibrosis and the support that would help someone maximize their function and participation.
Clients who currently receive in-home airway clearance through a Homecare provider may lose these services.
CF is in the grey and difficult space between being a medical condition that would be supported by health services and a disability that would be considered for support under the NDIS. This results in a lack of clarity about how people with CF can access services and who is responsible for the service provision.
The are many unknowns in relation to the NDIS. This is true for individuals who are successful and do receive access to a support plan, as well as for people whose applications are declined.
Success has been varied and the uniqueness of everyone’s circumstances makes providing general advice very challenging. We have been proceeding with care and consideration of each person’s individual circumstances before either encouraging or supporting an application for the NDIS.
In addition to advocating for people with CF to have an automatic entitlement to participation, CFNSW is constantly monitoring the how the Scheme is being implemented and its impact on the CF community. The scheme is still in its infancy and there are frequent changes and a lot of uncertainty.
Sharing our knowledge with CF clinics staff and the community is essential. We have assisted people completing their documentation and helped ensure that the benefits received with an NDIS package outweigh the costs. This is not always the case and some people may lose more support than they gain. We are committed to achieving the best outcomes for people and families living with CF and in some circumstances, this may mean NOT applying to NDIS at this stage.
Our current recommendation is to consider your circumstances carefully prior to proceeding with an application to the NDIS. Seek advice from your clinic or the CFNSW Social Workers before applying to NDIS.
If you are approached by a Homecare provider asking you to join the Scheme so that your services can continue contact CFNSW or your clinic for advice prior to proceeding.