On Tuesday, 30th June 2020, Carers WA CEO, Paul Coates, and Carers WA Systemic Policy Officer, Felicity Mitchell, attended the hearing of the Joint Standing Committee on the National Disability Insurance Scheme inquiries into NDIS planning, NDIS workforce and general issues around implementation and performance of the NDIS. Their comments in this hearing were to speak about the main concerns of carers from their experience with the NDIS system. Carers WA understands the increased anxiety within groups due to COVID-19, but recognise that the pandemic cannot be blamed for some of these issues mentioned in this hearing- we need to address the system itself.
Carers WA supports Western Australian carers through advocacy, service provision and partnerships. We are the voice for WA carers and at the forefront of advocating for carer issues faced in the system. We represent the needs and interests of carers and work to achieve an improved quality of life for family carers in our state.
Carer issues presented were researched through nationwide surveys and general carer reports in the community.
The main carer concerns stated in this hearing were:
- Issues accessing the NDIS: To access the NDIS currently the process requires significant time, knowledge and cost. This responsibility often is completed by the carer, in addition to their caring role. Carers report there is very little support in preparing documentation and the process can be confusing, stressful and overwhelming. Although there are Local Area Coordinators to help support carers with access requests, in practice the hearing heard LACs have been providing web links and booklets rather than specific advice and guidance. Further one-on-one support is required.
- Issues around the planning cycle: Once the access request has been successful, the participant and/or their carer enters the NDIS planning cycle which is intensive and requires considerable preparation. To obtain the funding required, the person with disability and/or their carer needs to present a highly detailed picture of ongoing needs for daily care, therapy, assistive technology and home modifications, community participation, comprehensive draft goals and much more for their plan. This plan will then need to be assessed and reported by health professionals. Carers who are creating this plan must make it extremely specific or they may end up with an inadequate plan. The hearing heard that it is often the case Local Area Coordinators have not adequately assisted with this pre-planning.
- Issues on lack of funding due to a loved one living at home with their carer: If a care recipient such as a child or adult lives at home with their parents who are caring, the NDIS tends to rely on informal support. This means their plans don’t provide the allocation of funding for people with disability to spend time in the community and their carers can’t access a break in their caring role. Issues with this are that carers may become burnt out, and sometimes aren’t able to provide care any longer. Although the NDIS acknowledged this issue and reintroduced the term “respite” into the NDIS price guide, more needs to be done so that carers are supported continuously, along with participants.
- Issues on lack of personal care workers, allied health professionals and support coordinators in the metro area but particularly in regional WA: Carers have reported that there has only been 1 support coordinator working in the Northam area, and other carers have reported that it’s difficult to find personal care workers just outside of Bunbury even as a large regional hub. The NDIA has worked on this issue, but it’s still a significant issue for WA, especially in remote regional communities.
- Issues regarding the review process for plans: Carers have reported that this is a severe area of stress for them. This is because the review process can go on for many months which may put enormous amounts of pressure on carer while they wait for outcomes. The time taken to review the process may leave the person with disability without funding support. Carers WA acknowledges that the Joint Standing Committee has made recommendations around the review process, including the provision of draft plans to minimise the incidence of a review being required, but people are still not seeing these draft plans.
- Issues regarding recognition of carers in NDIS plans: Carers are a significant form of support and are an important part of the NDIS. Even if a person with disability has a great, well-funded plan, that can often have an impact on creating more tasks and work for the carer to support that plan. Since the plan is focused on the individual with disability, the issue is less likely to come up, therefore the system needs far greater recognition for carers so that things like respite get included in the plan.
What services we are advocating for:
- One-on-one support for pre-planning rather than generic information session provided by Local Area Coordinators and agencies. Carers need a support system that will make sure the process of pre-planning is fully followed through, particularly where there are complex cases. Departments should remove more of the pressure in agencies and Local Area Coordinators on achieving contractual volumes, and instead achieve better results with quality plans.
- Employ more people who are properly trained with the mentality of achieving good quality plans in agencies.
- Decrease the barriers regarding the shortage of service provider workers by relaxing processes in the system. This will make use of service providers, especially in regional and remote areas of WA. This may include an aged-care service provider or mental health service provider in regional WA who is not a registered NDIS provider, but can now be registered and utilised in the process.
- Recognition that carers are an integral part of the NDIS, so respite is more widely recognised as a plan inclusion. In light of this issue, Carers WA is advocating for the term “respite” to not be labelled and connotated in its’ stigmatised way, but rather for people to look at the situation of the family. By destigmatising the term “respite”, rejection of respite in funding supports may be minimalised.
The team at Carers WA continue to advocate for this change for Western Australian carers to have the highest quality of life. We will continue advocating so carers are provided with choices and opportunities to participate in every aspect of life.