Irabina Autism Services specialises in delivering programs for children and adolescents diagnosed with an Autism Spectrum Disorder and their families. We are the largest Autism specific service in Australia and have been providing services for nearly 50 years. We recognise that having Autism not only affects the child but affects the whole family. We work alongside families to provide Autism education and skills to assist the children and parents or carers on their journey. Our focus is to provide opportunities for toddlers to adolescents to become the best they can be.
Irabina’s insights into the NDIS Joint Standing Committee reference points are as follows:
a. the ability of planners to understand and address complex needs It is Irabina’s view that planners appear to struggle to understand the needs of clients who are highly complex, and rely on carers supplying information from health professionals. When this information is not available it is our observation that planners are not able to make decisions and instead provide a nominal amount of funding for assessment purposes. This practice results in families having to find and access a professional to provide an assessment, while in the meantime not having adequate funding to pay for practical supports such as Core Supports while waiting for therapeutic supports to be available (there are often long waitlists for these kinds of supports). These issues are particularly relevant for clients who are complex and who have Behaviours of Concern. Planners appear to lack knowledge / awareness of pathways for clients with complex care needs (Complex Supports Needs Pathway).
It would be ideal for complex clients to be flagged early by intermediary services, such as the LAC partners, and be allocated to a planner who has a high level of experience working with people with complex needs.
b. the overall number of planners relative to the demand for plans Our experience as a service is that there is a wide variation in response times between intermediary services and this information is not readily to providers supporting families or to families themselves.
There is also inconsistency of information to families e.g., some LAC planners seem to tell families to come back when they have an assessment and they can review the plan, and provide more funding while other families do not receive this feedback i.e., they are told to come back after a year. This information is not generally provided to providers who are trying to support families.
c. participant involvement in planning processes and the efficacy of introducing draft plans
Many families feedback to us that they were confused by the whole process, and that often their planners are new or inexperienced. Sometimes families report a good response. Families often don’t know what supports might assist them, and they receive funding for odd things like technology supports that they didn’t ask
for or want. It would be good for planners to have a greater understanding of the kinds of supports that might benefit families, especially Core Supports, and guide these conversations with examples of how things could be different. This is especially relevant where people have complex care needs and behaviours of concern. These kind of core and capacity building supports are expensive and in our experience funding that is sufficient to meet the person’s goals and needs is rarely provided in the first plan and usually involves and arduous and stressful process for families to secure what they need.
‘Standard’ packages of improved daily living funding might cover the cost of an assessment and behaviour support plan however rarely meet the costs of the intervention, resulting in long delays as the plan then has to go back to the LAC where a review request response can be lengthy and uncertain.
Where people have behaviours of concern the planners seem to lack an understanding that even if core support funding is adequate these participants might not be able to access supports because many providers are unable to work with them. Their supports might be much more costly (e.g., 2 : 1).
It is not clear if there is a triage process in place for planners to know when clients need to be referred to complex care pathways, and away from general LAC services. In our experience these issues are not identified until we step in as a provider, and advise the LACs of the pathway that needs to be taken.
d. the incidence, severity and impact of plan gaps For people who have complex needs, such as behaviours of concern, or high physical care needs the toll on carers and the person with the disability is high. It is our experience that families approach each review with uncertainty, not sure if they will have to fight to retain what they have received as some families experience a reduction in funding in spite of the extent of the person’s care needs and goals still not being addressed, or new goals needing similar levels of support to be able to be tackled.
e. the reassessment process, including the incidence and impact of funding changes;
f. the review process and means to streamline it; Ideally the review process would involve consistent staff with a process in place to focus on what has changed and if more or fewer supports are required.
g. the incidence of appeals to the AAT and possible measures to reduce the number;
h. the circumstances in which plans could be automatically rolled-over; i. the circumstances in which longer plans could be introduced; j. the adequacy of the planning process for rural and regional participants; and k. any other related matters