Submission to the Parliamentary Joint Standing Committee on the National
Disability Insurance Scheme – NDIS
planning
September 2019
National Rural Health Alliance
PO Box 280
DEAKIN WEST ACT 2600
Table of Contents
-
Introduction ………………………………………………………………………………………………… 17 Terms of Reference ………………………………………………………………………………………….. 17
-
NDIS planning ……………………………………………………………………………………………………. 17 a) The experience, expertise and qualifications of planners …………………………………………… 17 b) The ability of planners to understand and address complex needs …………………………….. 18 c) The ongoing training and professional development of planners ……………………………….. 18 d) The overall number of planners relative to the demand for plans ………………………………. 19 e) Participant involvement in planning processes and the efficacy of introducing draft plans 19
f) The incidence, severity and impact of plan gaps……………………………………………………….. 19 g) The reassessment process, including the incidence and impact of funding changes ……… 20 h) The review process and means to streamline it ………………………………………………………… 20 i) The incidence of appeals to the AAT and possible measures to reduce the number ……… 20 j) The circumstances in which plans could be automatically rolled-over …………………………. 20 k) The circumstances in which longer plans could be introduced …………………………………… 20 l) The adequacy of the planning process for rural and regional participants …………………… 21 m) Any other related matters ……………………………………………………………………………………… 21 Appendix 1: List of Member Body Organisations ………………………………………………………….. 22
16
- Introduction The National Rural Health Alliance (the Alliance) welcomes the opportunity to provide this submission for consideration by the Parliamentary Joint Standing Committee on the National Disability Insurance Scheme (NDIS). Access to disability services in rural, regional and remote Australia, provided by health practitioners is a strategic policy priority areas for the Alliance.
The National Rural Health Alliance is comprised of 41 member organisations. It is committed to improving the health and wellbeing of the almost 7 million people living in rural, regional and remote Australia1.
Our membership is diverse and geographically dispersed and this reflects the complex nature of rural health. Members include consumer groups, Aboriginal and Torres Strait Islander peak body organisations in the health sector, health professional organisations and service providers. For a full list of our members see Appendix 1.
In this submission, the Alliance’s responses are informed by feedback sought from the membership, particularly from the allied health professions and consumer groups.
Terms of Reference
- NDIS planning a) The experience, expertise and qualifications of planners The National Rural Health Alliance and their member bodies, especially the allied health organisations have concerns about the overall lack of knowledge of the roles and scope of practice of the different health professionals that can provide services and supports for those with disabilities. There are individual planners who have some knowledge of the different roles of allied health practitioners, while others do not, resulting in inconsistent approvals for allied health practitioners to provide services. While some clients may be able to inform planners of the critical role of particular health professionals to meet their needs, it is often the most vulnerable who are disadvantaged by the planners’ lack of knowledge and experience. In addition, as the NDIS covers disability in its broadest scope, some planners have an inadequate understanding of the ability of some consumers who may have physical disabilities, but not cognitive disability, to engage more actively in their plans.
Some members reported that planners, while well-meaning, often do not have a good understanding of the connection between disability and health. In reality the two are highly intertwined but are artificially separated through different funding streams. It was reported that there is considerable turnover of planning staff, and while there is training available, it has been inconsistent and the ‘on the job’ experience of planners is also variable.
Some of our member bodies suggest that there needs to be a minimum consistent qualification requirement in disability and/or allied health. Also, there are other ways to use these expert skills to better advantage. For example,
- Have specialist planning teams for some types of disabilities 1 Throughout this submission references to remoteness areas are based on ASGC-RA, in which category 1 is Major cities, 2 is Inner regional areas, 3 Outer regional, 4 Remote and 5 Very remote. Because of small numbers, Remote and Very remote are often reported jointly. In the submission, references to ‘regional areas’ mean Inner plus Outer regional; and references to ‘remote areas’ mean Remote plus Very remote.
17
- Make use of expertise within the industry, by planners working collaboratively with specialist disability organisations or particular health professionals, who can better assist with assessment and future plans, given their knowledge of the progression of particular diseases
Some members thought that the Technical Advisory Team is not sufficient to address gaps in planner knowledge and skills.
b) The ability of planners to understand and address complex needs From consumer perspectives, the ability of planners to understand and address complex needs may be adequate for the individual, but there is concern that needs at a community level, particularly in very remote areas are not well understood. Planning can also be constrained by the plan needing to fit neatly into three broad categories, which can be difficult when trying to address complex needs. These categories do not always allow for the inclusion of health needs linked to the disability that could be funded through the NDIS. There is a tension (and a shift towards cost shifting) for the health components to be funded through health services, rather than the NDIS.
Experience from allied health professionals indicates that the impact of inadequate knowledge, skill, experience and qualifications amongst the planners is that plans do not fully address the needs and preferences of consumers. Consumers report that there can be a six to twelve month wait to rectify the deficits in the original plan. Another associated issue is that some planners do not appreciate the full scope of practice of practitioners. For example, Speech Pathologists and Occupational Therapists (OTs) can be involved in behaviour management, but some planners do not acknowledge the full scope of their practice and use behaviour teams instead, which is unnecessary. A consumer may be averse to light and sound or have no verbal language, which can lead them to become frustrated and aggressive towards others. The speech pathologist or OT do have the skills and knowledge to provide behaviour support to achieve better outcomes.
There are no clear processes available to address the challenge of planners’ inadequate knowledge base of complex needs at this stage. It is recognized that no planner could have expertise in all areas, but there needs to be processes and guidelines that assist planner access professional advice. It is the experience of some health professionals that their advice in the planning phases is often rejected, despite there being other examples where it has been accepted by all involved. Hence, there are inconsistencies in the way provider expertise is used in the planning process.
The consequences of current planners not having the ability to understand and deal with complex needs is having negative consequences on consumers and their carers. There are delays for consumers to access the scheme as their eligibility is queried and more creating unnecessary stress and delay.
c) The ongoing training and professional development of planners Firstly, there is a need for consistent ongoing training and professional development for planners at the national level. There are significant differences in training for planners when they initially commence their work, so this needs to be addressed. The disability sector is constantly evolving, so planners need to be abreast of all these dynamic changes through regular and comprehensive training. Members recommended that planners be educated on the benefits of all allied health providers and the peak bodies would gladly be involved in the education of planners. Member organisations have offered to provide webinars and written information and other training, but it has been rejected by the NDIA.
18
A consumer thought it would be useful for planners to be trained to have greater recognition of the impact that good health services, therapy and rehabilitation can play in certain disabilities and where and how these can be included under the NDIS funds.
d) The overall number of planners relative to the demand for plans The allied health member organisations did not have sufficient data on workforce numbers relative to the demand from consumers, but one member organisation indicated that there is a shortage of local NDIS planners in rural and remote locations. The local presence of planners, with good knowledge of services in schools and health facilities, was considered important, as was the ability to build relationships with consumers needing their assistance. Organisations indicated that they were aware of delays experienced by consumers at the planning and review stages. The fact that there are delays suggests that there needs to be more planners so that the system is more responsive and timely. There was objection to using the telephone to undertake planning sessions, owing to the inability of the planner to assess and incorporate environmental factors into the plan. Telephone planning may not be culturally appropriate for some consumers. A consumer from the Northern Territory indicated that there is a clear deficit of planners, but indicated that this may improve as processes are refined.
e) Participant involvement in planning processes and the efficacy of introducing draft plans
Consumers’ feedback indicates that involvement of consumers with their families and carers is essential. It was the experience of some that consumers are often not included in the plan and even when in the room, are not included in the conversation. It was felt that some planners were not aware or mistaken about the cognitive abilities of some of the consumers. A member organization indicated that often consumers with no verbal language are able to use speech generated devices, but they are often still excluded from the planning process. There has been some notable improvement in including consumers in planning, but further improvements are required. One member body indicated that draft plans be circulated for further input from both providers and the consumer, to reduce the number of plan reviews needed, as the original plan did not reflect the wishes and needs of the consumers. Providers may have a role in reviewing draft plans, particularly in complex areas, such as assistive technology.
f) The incidence, severity and impact of plan gaps Consumers indicated that there was a need for better understanding and an allowance for therapy or health interventions to be covered under NDIS. As indicated earlier, there appears to be cost shifting across to health and it is not covered under NDIS. The impact on people with physical rather than intellectual disabilities is that they do not receive the level of care they need to support improvement to their condition. A carer from the Northern Territory has a daughter with only 4% vision in one eye and none in the other. She is still waiting for bathroom modifications so the impact on her life is significant.
More generally, member organisations indicate that there can be gaps in meeting the costs for services or equipment, delays in renewals or system issues, which results in a lack of payment for services for providers. It appears to be improving, but with the rate of change in the system, it can be difficult to know if the issues may occur again in the future. In relation to assistive technology, there are devices not being funded and there is no insurance for devices costing upwards of $20,000. The mechanisms for insurance and who is responsible for the insurance of these expensive
19
devices is not clear. There is little certainty about the process if you need a replacement device. In rural and remote areas, it takes longer to receive much needed devices. For example, a person in late stage Motor Neurone Disease may need a device to assist with communication, but the approval process takes so long that their communication in the last stages of life is compromised, which is very distressing for the consumer and the family.
g) The reassessment process, including the incidence and impact of funding changes
It is understood that the reassessment process is primarily directed at children as they shift from being eligible for ECEI services to being assessment for access to the mainstream NDIS. Those with developmental delay are often expected to engage in a reassessment process to essentially ‘prove’ that they continue to require services for a long term or permanent disability. This creates unnecessary and stressful processes for families as they may be deemed ineligible for the scheme and their funding may cease. One member organization thought that a funding review every 12 months was reasonable as it is important to reassess goals. It was also important for clinicians to be accountable and be able to report on outcomes for their clients.
h) The review process and means to streamline it Member organisations argue that the review process is not working well. Several member organizations indicated that funding review meetings are being requested too early and planners are making clinical decisions that they are not qualified to make. The planners are finalizing plan reviews before the clinician has submitted their final reports. There was a suggestion that there could be two processes for review – one for those plans that require a major review and another that requires lower level review for minor changes to plans.
i) The incidence of appeals to the AAT and possible measures to reduce the number
Member organisations suggested that the biggest driver of appeals comes from a planning process that was not sufficiently collaborative in the first instance, owing to gaps in knowledge and expertise of the planners.
j) The circumstances in which plans could be automatically rolled-over Member organisations thought that many people with a long term disability, such as Down Syndrome, would have stable support needs and their plans could be automatically rolled over. Nevertheless, the question remained as to who makes that decision. Should that be the family, guardian or advocates making these decisions? If was felt that there needs to be some safeguards in place to ensure that the consumer receives all the supports necessary, as there are many vulnerable consumers, who may be less able to assert their needs. Other feedback suggested that changes may be required at key developmental stages, when assistive technology needs replacement and when there are significant changes in functionality. One suggestion was for a ‘light touch’ planning process.
k) The circumstances in which longer plans could be introduced 20
The responses here were similar to above. One suggestion was to have longer plans in the last two years of school or have a five year plan, for example. One consumer suggested that longer plans could be introduced in situations of severe disability where likelihood of improvement is very low, provided the scope to review plans remains in place, if necessary.
l) The adequacy of the planning process for rural and regional participants Telephone planning has been a particular issue, but with more people being seen in person this should improve the planning for those in rural and regional areas. However, it member organisations were not clear if those in remote areas are having their plans developed face to face. There are issues with delays in equipment arriving for those in rural and remote locations. There can be greater wear and tear on equipment, such as wheelchairs in rural and remote locations, so if another replacement chair does not arrive, it can be very isolating for consumers. Back up for some equipment is needed. Equipment may need to be better quality in rural and remote areas to withstand harsher conditions. This is not necessarily about planning per se, but these issues need to be considered in the planning process.
Other feedback suggest that sometimes planning processes can be based on available services rather than the needs of consumers. A pragmatic approach may be necessary, but member organisations also argue for the need to develop better service offerings in rural and remote regions. If these services are not identified in the planning process, then it is difficult to build the case for market development.
One consumer indicated that the planning process for rural and regional participants can be a monumental stumbling block. Planners need to be culturally literature at multiple levels. Another consumer spoke of the restricted access to allied health services. Even in the city of Newcastle, a consumer required hydrotherapy as part of her plan, but it was difficult to find a suitable program and when it was found, the physiotherapist went on maternity leave and was not replaced. If this is an experience in Newcastle, there must be issues in more remote parts of the country. A consumer expressed a desire for planners to be aware of research programs, robotics or new technology and trials in relation to these new developments. Some sort of central register about trials could be helpful. Large teaching hospitals and universities that run trials tend to be metro-based.
m) Any other related matters The experience of one consumer was that there has often been a disconnect between the plan/specific plan activities and the implementation of those activities in the client’s everyday life. In many cases, implementation of the plan is highly dependent on the paid support workers/carers assisting the client. If there is ineffective communication between the disability support manager and the range of support workers that provide client care, then the plan may not be implemented fully. i.e. plans can be written up but support workers don’t or can’t implement them.
An example was a client who was provided with a motorised wheelchair in their plan. The client required OT support to learn how to use the chair. The client also required further practice and support to strengthen this learning and to build confidence in using the chair.
21
This needed to be reinforced through support workers/carers working with the client and encouraging him to use the chair – ideally everyday or at least at set times. A case conference was held with support workers and the client specifically to arrange this. However, not only was the support worker reinforcement lacking, OT support was also limited (i.e. OT funding support through the plan was insufficient to fully embed the training). In addition, the client was subsequently moved to a house where drive-way access was deemed too steep to be safe for him to take the motorised wheelchair up and down. The result was an expensive equipment outlay which ultimately was not used because support to train/build confidence to use it was not provided. This is a lost opportunity and a waste of funds to the NDIS and to the client. Planners really need to take into account how the plan will be implemented. For situations where a person receiving NDIS funding is reliant on support workers to implement aspects of the plan, there needs to be more accountability of all support/carer staff to do so. Support workers also need to be trained in motivational interviewing to work with clients who may need encouragement to undertake their therapy/use their equipment.
Another aspect plan translation is how one-on-one support and access to the community is interpreted. One client I know has funding from their NDIS plan used to fund support workers to take them to the GP (this comes under the community access part of the plan). Perhaps this really is legitimate however it seems to me that this should just be a routine part of a support worker’s role and that the plan funds should be used for additional community access.
Appendix 1: List of Member Body Organisations
National Rural Health Alliance 2019
41 organisations with an interest in rural and remote health and representing service providers and consumers:
Allied Health Professions Australia Rural and Remote
Australasian College for Emergency Medicine (Rural, Regional and Remote Committee)
Australasian College of Health Service Management (rural members)
Australian College of Midwives (Rural and Remote Advisory Committee)
Australian College of Nursing - Rural Nursing and Midwifery Community of Interest
Australian Chiropractors Association Aboriginal and Torres Strait Islander Rural Remote Practitioner Network.
Australian College of Rural and Remote Medicine
Australian Healthcare and Hospitals Association
Australian Indigenous Doctors’ Association
Australian Nursing and Midwifery Federation (rural nursing and midwifery members)
Australian Physiotherapy Association (Rural Members Network)
Australian Paediatric Society
Australian Psychological Society (Rural and Remote Psychology Interest Group)
Australian Rural Health Education Network
Australian and New Zealand College of Anaesthetists
Congress of Aboriginal and Torres Strait Islander Nurses and Midwives
Council of Ambulance Authorities (Rural and Remote Group) CRANAplus
Country Women’s Association of Australia
Exercise and Sports Science Australia (Rural and Remote Interest Group)
22
Federation of Rural Australian Medical Educators
Isolated Children’s Parents’ Association
National Aboriginal Community Controlled Health Organisation
National Aboriginal and Torres Strait Islander Health Worker Association
National Rural Health Student Network
Paramedics Australasia (Rural and Remote Special Interest Group)
Pharmaceutical Society of Australia Rural Special Interest Group
RACGP Rural: The Royal Australian College of General Practitioners
Royal Australian and New Zealand College of Psychiatrists
Royal Australasian College of Medical Administrators
Royal Australasian College of Surgeons Rural Surgery Section
Royal Far West
Royal Flying Doctor Service
Rural Doctors Association of Australia
Rural Dentists’ Network of the Australian Dental Association
Rural Health Workforce Australia
Rural Optometry Group of Optometry Australia
Rural Pharmacists Australia
Services for Australian Rural and Remote Allied Health
Society of Hospital Pharmacists
Speech Pathology Australia (Rural and Remote Member Community)
23