National Disability Insurance Scheme (NDIS)
Planning
September 2019
The Dietitians Association of Australia is the national association of the dietetic profession with over 7,000 members, and branches in each state and territory. DAA is a leader in nutrition and advocates for food and nutrition for healthier people and healthier communities. DAA appreciates the opportunity to provide feedback to the Joint Standing Committee on the National Disability Insurance Scheme for the inquiry into NDIS Planning.
DAA interest in this consultation
The Dietitians Association of Australia (DAA) supports reforms which improve the wellbeing of people with disability in Australia. DAA considers that there has been unmet demand and poor recognition of the nutrition needs of people with disability in the past. Improved access to nutrition products and dietetic services through the implementation of the National Disability Insurance Scheme (NDIS) will enable people to reach their goals, to increase their social and economic participation, and to develop their capacity to actively take part in the community.
The Accredited Practising Dietitian program administered by DAA is the platform for self-regulation of the dietetic profession and provides an assurance of quality and safety to the public. APDs are food and nutrition experts who translate the science of nutrition into practical solutions for healthy living. APDs assist people with disability to make positive lifestyle changes tailored to their unique needs.
Summary statement
More work needs to be done for the NDIS to enhance the quality of life of people with disability, their families and carers. The experience of DAA members is that people with disability are being adversely affected by the denial of access to Accredited Practising Dietitian (APD) services and nutrition support products.
DAA considers it vital that: the NDIA issues policies and guidelines to guide the work of planners, including clear guidance for assisting participants wanting to include APD services and nutrition support products in their plans. planners undergo mandatory training on the important role of nutrition care and the benefit of Accredited Practising Dietitian services for people with disability. the NDIA engage with the Dietitians Association of Australia on a continuing basis as ‘subject matter experts’ and engage with APDs as consultants or on staff to provide planners with expert advice when required. For example, having an APD on staff would allow planners to seek advice about food and nutrition matters and obtain guidance on APD services and nutrition support products for participant plans.
DAA would also like to see much greater consultation with professional peak bodies by the NDIA, and even better would be genuine co-design.
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Our responses to the inquiry Terms of Reference are as follows.
a) the experience, expertise and qualifications of planners: Dietitians Association of Australia (DAA) members who work in the disability field report that many planners do not understand how various food and nutrition related functional impairments affect the life of people with disability, or understand the vital role that Accredited Practising Dietitians (APDs) play in improving the health, wellbeing and social and economic participation of NDIS participants. Examples of this are underweight (e.g. a child with cerebral palsy and swallowing difficulties), obesity (e.g. traumatic brain injury in an adult depending on a wheel chair for mobility), bowel management (e.g. an adolescent with autism), selective food behaviours with nutrient deficiencies (e.g. a child with autism), lack of safe swallowing requiring gastrostomy feeding (e.g. an adult after a stroke), cardiovascular disease (e.g. an adult with intellectual disability), Type 2 diabetes (e.g. an adult with severe mental health disability)1.
As a result, the requests of NDIS participants to have nutrition support included in their NDIS plans are frequently denied, despite nutrition care being essential to their wellbeing and ability to participate in society.
NDIS Participants who have been able to include APD services in their NDIS plans have been able to build their skills and independence and have increased their enjoyment of social and economic opportunities. One example comes from New South Wales where an APD worked with a young man with autism and mental health issues to change his diet and gain control over bowel issues such that he was able to attend school regularly. He was also able to overcome the need for restrictive practices used to manage his desire to eat peanut paste by the jar when anxious.
b) the ability of planners to understand and address complex needs: People with disability experience physical, intellectual, sensory and/or psychiatric impairments that require unique and complex food and nutrition management. Yet these complex food and nutrition needs are poorly understood by many planners, given nutrition competencies are not included in their core training.
There is a lack of understanding of the impact of food and nutrition issues and the role of APDs in personal support for people with disability living alone or with family. This extends also to the need for funding in NDIS plans to enable training of support workers and the development of policies and procedures for people with disability living in shared supported accommodation.
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c) the ongoing training and professional development of planners: Training about the important role of nutrition care and the benefit of Accredited Practising Dietitian services for people with disability is not mandated for planners. This is a major issue, as having a poor understanding of the link between nutritional status and physical, mental and social wellbeing, means some participants may go without the food and nutrition support they need (as part of their plan) to achieve their personal goals.
The lack of training is particularly problematic in the absence of the development by the NDIA of coherent, consistent and evidence-based policies to guide planners and other NDIA delegates. DAA considers there is a real need for the dissemination of clear guidelines nationally to reduce the uncertainty about what is reasonable and necessary in participants NDIS plans. DAA members have reported instances where some planners have granted APD services in participant NDIS plans, and other instances where APD service have been denied. This has continued past the resolutions made on 28 June 2019 at the COAG Disability Reform Council meeting, partly because dietitians were not included in drafting of the fact sheet issued after the meeting.
DAA has questioned the NDIA about their use of subject matter experts in relation to food and nutrition related functional impairments. DAA understands that the NDIA has relied on other professions for advice about dietetic practice, which is unethical, unacceptable and contrary to the codes of conduct for registered and self-regulated professions alike.
DAA and Allied Health Professions Australia (AHPA) have reached out on a number of occasions to the NDIA. There are some signs recently that the NDIA is more willing to engage with peak bodies, but there is a long way to go for strong relationships to be developed to achieve co-designed approaches to systems to achieve the intent of the NDIS.
d) the overall number of planners relative to the demand for plans: Feedback from DAA members is that reviews to amend NDIS plans, (e.g. to have dietetic hours or nutrition support products included), take an unacceptably long time. It seems clear that the number of planners is lacking compared to the number of new and review plans to be undertaken, let alone the requests to adjust plans which do not reflect the choice and control of NDIS participants.
e) participant involvement in planning processes and the efficacy of introducing draft plans: DAA members frequently report instances where NDIS participants with complex care and support needs related to functional impairments of eating and drinking have requested APD services or nutrition support products to be included as part
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of their NDIS plan, yet this request has been denied by the planner, with the explanation being that some dysfunction or impairments of people with disability are the responsibility of health services, and not the NDIS. This is of particular concern as there has not been any credible evidence provided to support decisions denying some NDIS participants nutrition support products or APD services in their NDIS plans.
f) the incidence, severity and impact of plan gaps: Many participants who have previously had nutrition support products or APD services provided under state or territory Disability Services have had these same products or services denied in their NDIS plans under the NDIS. Recent examples from Queensland are provided (refer to the PDF document lodged with DAA’s submission) to illustrate this point.
g) the reassessment process, including the incidence and impact of funding changes: Feedback from DAA members is that NDIS participants are hesitant to ask for NDIS plan reviews, as they are concerned that they may end up with less in their plans. A member recently reported that the NDIS participant who had very complex needs, including Type 2 diabetes and nutrition via a gastrostomy, was denied APD services in their NDIS plan. A plan review was requested with some items included, but not APD services. The NDIS participant had four admissions to hospital, two related to swallowing issues and two related to blood sugar control. Sadly, the NDIS participant died during the last admission.
APDs in other states and territories have reported that NDIS participants have had hospital admissions, which might have been avoided if APD services had been included in their NDIS plan.
h) the review process and means to streamline it: No response.
i) the incidence of appeals to the AAT and possible measures to reduce the number: As highlighted in the response to question (f), some participants who have previously had nutrition support products or APD services included their plans when supported by state or territory Disability Services have had these same products or services denied in their plans under the NDIS. Some of these participants have requested reviews, but when faced with unsatisfactory outcomes, they have applied to the Administrative Appeals Tribunal (AAT).
DAA is aware of at least four Administrative Appeals Tribunal applications by NDIS participants (3 cases in New South Wales and 1 case in Western Australia) for
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which APDs have provided evidence in support of the appeal against NDIA decisions. In the AAT case of Mr Burchell (June 2019) the Tribunal set aside the NDIA decision and directed the NDIA that the eating plan prepared by an APD was a reasonable and necessary support.
DAA is pleased to see a change in direction signalled by the resolutions of the COAG Disability Reform Council meeting on 28 June 2019, which agreed the NDIS will fund a range of services to support nutrition management, dysphagia management, diabetes management, continence, wound and pressure care for NDIS participants living in the community. DAA welcomes the news that NDIS participants who need these disability-related health supports as a direct result of their disability, and as part of their daily life, will be able to access funding for the services. It is unacceptable however that the NDIA has chosen to delay access to funding for the services from 1 October 2019. There is no clear plan identified to review plans for NDIS participants at risk of harm from the denial of APD services and/or nutrition support products in the plans currently in place.
j) the circumstances in which plans could be automatically rolled-over: It is less likely that plans could be automatically rolled over for participants with nutrition support products and/or APD services included their NDIS plans because many people with disability require personalised complex food and nutrition management and monitoring.
k) the circumstances in which longer plans could be introduced: No response.
l) the adequacy of the planning process for rural and regional participants: People with disability who live in rural and remote areas are highly disadvantaged compared to people with disability who live in urban areas because of the lack of access to experienced APD providers, the disruption of previously well functioning systems, and the limitations of planners. The planning process needs to address all of these disadvantages so as to ensure NDIS participant needs are adequately met.
m) any other related matters: DAA would also like to see much greater consultation and co-design with professional peak bodies by the NDIA.
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References:
- Position of the Academy of Nutrition and Dietetics: Nutrition Services for
Individuals with Intellectual and Developmental Disabilities and Special Health
Care Needs. J Acad Nutr Diet. 2015;115:593-608. Available from: https://jandonline.org/article/S2212-2672(15)00121-5/fulltext
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