Submission 57 — Macarthur Disability Services — Productivity Commission Study into NDIS Costs | External submission

QUESTIONS – PAGE 10

Are there any cost drivers not identified above that should be considered in this study? If so:

It appears that the cost associated with telephone planning with participants is not fully considered. Telephone planning often results is the creation of NDIS plans that are less then optimal which in turn, forces participants to lodge an appeal. This generates considerable angst and confusion among participants and their carers. Obviously the costs associated with face-to-face planning sessions are higher than telephone meetings, however, these costs need to be considered in the context of confusion caused to participants and the need to process plan reviews.

It should be noted that telephone planning is a significant issue for people living with a psycho-social disability. It is believed that face to face meetings should be adopted for this cohort as a matter of priority.

how do they impact costs in the short and long term?

The Agency’s preference for telephone planning is creating additional work in processing requests for plan reviews. While it may not add to the costs of supports within plans, each review adds to the Agency’s cost of doing business.

The NDIA’s pricing schedule is of great concern to most in the sector. The costs associated with delivering support to people with a disability is not reflected in the pricing policies of the Agency. Most disability support organisations have made significant structural changes and amended business processes to enable the delivery of more flexible and efficient operation. Despite this, many organisations are struggling financially. Not because they are inefficient, but because they cannot attract a level of payment in line with reasonable cost.

A likely consequence of the Agency’s approach to pricing, will see service providers either fold or seek to cut costs at the expense of risk management and quality (or both). Either outcome will ultimately impact on the safety of participants and support staff and ultimately the cost of the scheme.

As a non-lawyer, I understand that for neglect to be perpetrated by an individual or organisation, a duty of care must exist and that the adverse outcome must be reasonably foreseeable. Heaven forbid that a person with a disability or staff member be seriously impacted as a result of organisations cutting corners to meet a ridiculous NDIA enforced price point.

As long as the pricing set by the NDIA continues to pressure the sustainability of service providers, there is a significant risk to the cost and sustainability of the NDIS. Using the current thinking, the market will generate a fix should traditional service providers cease to operate. However, for people with a disability requiring complex support, it may not be economic for even new lean players in the market to deliver a quality service while managing the risks to participants and staff. The question that should be asked is what will be the long term cost impact of service providers either folding or refusing to deliver supports to certain cohorts?

Recommendation: The Agency should focus on the quality of plans rather than just the number of people enrolled into the NDIS.

Recommendation: the Agency should look to increase its pricing to enable providers to manage risks appropriately.

how, and to what extent, can government influence them?

The government must, as a matter of urgency, review the NDIS pricing schedule to ensure the long term sustainability of providers and not just consider methods of reducing the cost of delivering the NDIS.

At present there would appear to be resources wasted due to poor (or at best) inconsistencies in the development of individual NDIS plans. Without resolving this issue, the next phase of the NDIS rollout will only add to the growing list of people with a disability who find themselves disillusioned as a result of the NDIS rather than empowered.

QUESTIONS PAGE 12

Why are utilisation rates for plans so low? Are the supports not available for participants to purchase (or are there local or systemic gaps in markets)? Do participants not require all the support in their plans? Are they having difficulty implementing their plans? Are there other reasons for the low utilisation rates?

Feedback from people with a disability and their carers indicated there are a variety of possible explanations for the underutilisation of plans. These include:

People who receive their plans are not clear on the process required to activate their plans in a timely manner. The instructions provided with plans do not deliver the level of detail required by many people with a disability and their carers to progress plans. In addition, it is reported that attempts to clarify issues involving plans and plan activation with the NDIA can prove to be frustrating and often fails to deliver the information required.
The quality of planning is variable. Some people appear to have provision for too much support in their plans while others have plans which do not address the needs and aspirations. This may account for some people failing to utilise all supports within their plans.
Because the scheme is still relatively new, and the urgency around having people enrolled into the NDIS, service providers are overwhelmed by the volume of processing required to bill the agency for support provided. It is possible that once all backdated supports have been invoiced, some of the utilisation gap will close.
There have been incidences where some people with a disability have been unable to purchase support because of the NDIS pricing schedule – it is simply not viable for providers to deliver the supports required within the current price set by the Agency.
Why are more participants entering the scheme from the trial sites than expected? Why are lower than expected participants exiting the scheme?

Because of traditional funding models, gaining access to supports was often determined through a first-first-served basis. Even where services such as respite were allocated according to need, there was significant unmet need. The promise offered by the NDIS of supports being provided according to need and aspiration has meant that people who have traditionally found themselves without supports are coming forward to register for the scheme.

Experience in supporting people with a disability suggest that while access to early intervention is vitally important and may lead to a decrease in the supports required in the years to come, it does not eliminate the need for all ongoing supports.

What factors are contributing to increasing package costs?

It is believed that the significant variability in the quality of the plans has an impact on costs. It is reported that while some people with a disability have plans that are in keeping with their needs and aspirations, others do not – some people receive packages that appear very low, others appear very high.

During its early stages, the Agency stated that no-one would be worse off under the NDIS than they were under the traditional service models. This has not proven to be the case in practice, with many people with a disability and their carers reporting a reduction in supports being funded in NDIS packages. It is believed that people with a disability and their carers may be building in additional supports as a safety net against the risk of being short changed in their packages.

QUESTIONS PAGE 16

How will the full rollout of the NDIS affect how mental health services are provided, both for those who qualify for support under the scheme and those who do not?

The following emerging issues are being experienced by people with psychosocial disability, their families and carer. Unless addressed before full roll out of the scheme, they may potentially undermine the good intent and objectives of the NDIS.

Access to the Scheme

People with psychosocial disability and their families are experiencing barriers when attempting to access the scheme. Many find the process confusing and inconsistent especially in respect of eligibility criteria. The application process requires a high level of personal organisational ability and skills to negotiate complicated and complex processes. For many people experiencing episodic periods of unwellnesss or taking medication that affects concentration, unclear and inconsistent communication regarding access to the scheme and associated NDIS processes are causing people to avoid applying for the NDIS. Furthermore, many of our participants report additional anxiety and feel the difficulties in accessing the scheme are not supportive of the maintenance of good mental health. Consequently access to the scheme relies on extensive support from support staff and community NGO providers to assist a person to show how mental illness impacts on their functionality. When a person with severe and persistent mental illness is supported by a mental health service provider, that has the appropriate NDIS knowledge and expertise, they will most likely be granted access to the scheme. To date the most likely predictor of success is whether the person can clearly provide evidence of the presence of a psychosocial disability that is likely to be lifelong and impacts their daily life (i.e. functional impact). Current experience indicates that access the Scheme is often easier to gain for people with Schizophrenia, Bipolar Disorder or dual diagnoses compared to people with Anxiety and Depressive disorders. There appears to be limited understanding and knowledge about the lifelong impacts of these latter disorders.

An additional barrier to access is the non-acceptance of assessments from GPs even though such assessments are considered acceptable under the NDIA guidelines. In many cases it is the GP that knows the person the best and the impact mental illness has on that person’s life. If a GP assessment is not accepted, the onus is on the person to seek further assessments via a Mental Health Occupational Therapist, Psychologist or Psychiatrist, which are often beyond the financial reach of many people living with mental illness. This, accompanied by long waiting lists for public health mental health assessment services, prohibits access to the scheme for many people.

Likewise, people living with mental illness often do not identify as having a disability. Service participants often require considerable assistance to understand their mental illness and identify with psychosocial disability. In many instances this work relies a high level of worker skill, is time intensive with flexible approaches being a requirement to engage people with the scheme.

Currently block funded services such as PHaM and PIR are able to provide the necessary support to assist people with psychosocial disability to access the scheme. As these block funded services transition to the NDIS, full roll out of the scheme will prevent provision of ongoing support of this nature and advocacy for people to access the NDIS.

Recommendation: NDIA provide specific eligibility information and criteria associated with psychosocial disability

Recommendation: NDIA uphold assessments conducted by a person’s GP

Recommendation: Make available recurrent funding to support outreach service options that assist people to identify with psychosocial disability and access the scheme

NDIS Plans

The quality and consistency of NDIS plans differ greatly. A number of plans include supports that people have not asked for, while others receive plans that bear little connection to the goals discussed with planners resulting in minimal supports contained within the plan. Anecdotal evidence indicates that some of this inconsistency may be associated with Local Area Coordinators (LACs) and NDIA planners having limited knowledge and understanding about psychosocial disability, its’ episodic nature and impact on the lives of individuals. In many instances people with mental illness may present very well at a planning meeting, leading to an assumption by LACs and planners of a high level of functionality, therefore not requiring the supports identified by participants and their families.

Whilst MDS acknowledges that the NDIS has the potential to increase quality of life for people with psychosocial disability by providing practical supports that increase quality of life, NDIS plans should also have built in flexibility to enable the person to draw on additional supports during times when they may become unwell. Whilst the goal of recovery is an essential foundation for provision of support to people with psychosocial disability, there may be times when the person requires extra early intervention support to maintain recovery and prevent crisis. This often requires mentoring and assistance to access clinical services quickly. This type of support is currently available to people accessing block funded services, however many participants and their families are expressing concern that once they receive a plan, there is little flexibility to manage periods of unwellness.

Recommendation: LACs and NDIA planners to have demonstrated experience working with people with mental illness or provide extensive mental health/trauma informed care training to support a consistent approach to NDIS plan development.

Recovery vs. Lifelong Disability

The full roll out of the NDIS should mean that recovery is the underpinning aim of any plan, however this should not mean that once a person is doing well that support be lessened at plan review. Ongoing recovery and living well with mental illness relies on reliability of supports being in place. Recognition of this important link and inclusion into NDIA guidelines will enable the goal of maintenance of recovery.

Recommendation: include options within the NDIS pricing categories that enable non-clinical recovery oriented support options

Supporting Carers

Under the traditional models, some carer support services are funded through the National Respite Development Funding (NRDF). This funding supports carers of people with mental illness, with the care recipient being the secondary participant. The funded model utilises a holistic prevention and early intervention approach to support that assists carers to address critical issues before they escalate into crisis. This funding is currently transitioning into the NDIS, leaving carers without any support. The majority of carers supported have complex needs themselves, often exacerbated by periods of both physical and mental unwellness.

Recommendation: the NDIS to recognise the importance of carers of people with psychosocial disability, with the Commonwealth Government making funding available to support this group of carers.

What, if anything, needs to be done to ensure the intersection between the NDIS and mental health services outside the scheme remains effective?

Currently services receiving block funding to support people with mental illness are able to utilise flexible approaches to service delivery that enhances recovery and prevents escalation of mental illness, crisis situations (eg. homelessness, social isolation, family violence, family breakdown) and future or excessive admissions to mental health facilities. To ensure the intersection between the NDIS and mental health services outside the scheme remains effective, ongoing support and preventative non-clinical service options should be available for people NOT eligible for NDIS. These services, such as Personal Helpers and Mentors (PHaM) are experienced at building a person’s capacity leading to recovery. Recovery oriented service models also have a social and economic benefit through early intervention and prevention.

Recommendation: retain the PHaMs service model outside of the NDIS to ensure continuity of support for people not found eligible for the NDIS

QUESTIONS PAGE 18

Is the planning process valid, cost effective, reliable, clear and accessible? If not, how could it be improved?

The current NDIS planning process appears to generate wildly varying supports for people with a disability. It would appear that the quality of the plan is dependent upon the planner, therefore the planning process is not reliable. The push to meet NDIS enrolment targets is clearly having an impact of the quality of the quality of plans generated for individuals. As a result, many participants are forced to request a review or appeal their plans.

The use of reference plans in the planning process, while time efficient, may well be leading to plans being developed that do not support the achievement of goals and aspirations. The use of reference plans is probably useful for planners with limited experience in supporting people with a disability, however, it appears that the application of reference plans is failing to deliver plans that are sufficiently focussed on individuals.

It should be noted that telephone planning is a significant issue for people living with a psycho-social disability – it is an barrier to engagement and creates considerable angst and concern. It is believed that face-to-face meetings should be adopted for this cohort as a matter of priority.

Recommendation: People with a disability should be provided with the opportunity for face-to-face planning meetings as the norm with telephone meetings being considered and option.

How should the performance of planners be monitored and evaluated?

Less attention should be given to reporting on the number of people enrolled in the NDIS and greater attention should be paid to the quality of the plans. The measurement and reporting on the percentage of plans requiring review of appeal is an obvious starting point in determining the performance of planners. If we were considering the performance of someone manufacturing cars, the number of vehicles produced is obviously a key measure, however, the number that need to be returned due to faults would also be paramount.

In the early stages of the NDIS implementation, “No-one would be worse off under the NDIS” was a sentiment often expressed. However, in practice there are many examples of where NDIS plans leave individuals well short of the services and supports received under traditional funding models.

Recommendation: Planners performance be measured on not only the number of plans developed, but also the number of these plans that require review of appeal.

QUESTIONS PAGE 19

Do NDIA assessment tools meet these criteria? What measures or evidence are available for evaluating the performance of assessment tools used by the NDIA?

The validity, reliability and accuracy of the NDIA’s assessment tools are questionable. The appropriateness of plans vary widely in relation to determining the frequency and intensity of support for individuals. This would especially appear to be the case for people with complex support needs where the risks associated with the provision of supports are often seriously underestimated. If plans fail to build in the costs associated with the management of risks, it is likely that individuals with complex support needs will be either be forced to agree to a substandard, high risk service arrangement or find themselves without a service at all, as it will not be viable for providers to deliver services for such people.

Anecdotal evidence suggests that the quality of the plan appears closely linked to the quality of the planner. While accepting that the scheme is still relatively new, there appears to be a high percentage of plans requiring review. If the assessment tools were valid, reliable and accurate we would not be seeing such high rates of plan reviews (anecdotal evidence suggests that 50-60% of plans need review).

When a plan is reviewed and amended, a new plan is activated on the portal and the old plan becomes locked. This means that claiming for service delivered under the old plan but not claimed prior to the closure becomes impossible on the Portal. The Agency provides no indication that a new plan to be released making it impossible for service providers to assess the timing of claims against the old plan.

Recommendation: the assessment tools should be reviewed to improve validity, reliability and accuracy.

Recommendation: Communication from the Agency regarding plan reviews would help prevent the claiming process from becoming bogged down.

What are the likely challenges for monitoring and refining the assessment process and tools over time? What implications do these have for scheme costs?

The varying quality of plans may indicate a lack of understanding on the part of the planners. It may be beneficial to consider increased training for the planners. The reliance upon telephone planning may also be contributing to the number of plans requiring review. While quicker than face-to-face meetings, telephone planning may be creating growing inefficiency if considered in the context of the entire rollout process rather than focusing on merely on the rate of people with a disability being transferred into the Scheme.

QUESTIONS PAGE 21

Are the criteria for participant supports clear and effective? Is there sufficient guidance for assessors about how these criteria should be applied? Is there any improvements that can be made, including where modifications to plans are required?

The quality of plans vary widely in relation to determining the frequency and intensity of support for individuals. This would suggest that there is an issue in translating assessment data into support plans. Evidence suggests that there is a high number of plans that require review due to the funded supports failing to meet the needs and aspirations of participants.

There appears to be an issue affecting plans for people with complex support needs in that the risks associated with the provision of supports are often seriously underestimated.

Recommendation: Greater weighting should be given to complexity and the risks associated with the delivery of supports when drafting plans.

To what extent does the NDIA’s budget-based approach to planning create clear and effective criteria for determining participant supports? To what extent does it lead to equitable outcomes for participants? What improvements could be made?

It would appear that the approach currently employed by the Agency is too heavily weighted towards budget at the expense of the needs and aspirations of people with a disability. The use of reference plans appear to be leading to a formulaic methodology to planning rather than a person centred approach.

Are the avenues for resolving disagreements about participant supports appropriate? How could they be improved?

At present the process for resolving disputes around participant supports is too slow. In addition, when a plan is reviewed and amended, a new plan is activated on the portal and the old plan becomes locked. This means that claiming for service delivered under the old plan but not claimed prior to the closure becomes complex and slow. The Agency provides no indication that a new plan to be released making it impossible for service providers to assess the timing of claims against the old plan.

Recommendation: Communication from the Agency giving providers advanced notice of plan reviews would help prevent the claiming process from becoming bogged down.

QUESTIONS PAGE 24

What factors affect the supply and demand for disability care and support workers, including allied health professionals? How do these factors vary by type of disability, jurisdiction, and occupation? How will competition from other sectors affect demand (and wages) for carers? What evidence is there from the NDIS trial sites about these issues?

Competition from other sectors, especially the aged care sector is having an impact on the supply of labour in South West Sydney. At the same time, demand for staff to support people with a disability (particularly) out of hours is increasing.

To what extent is the supply of disability care and support services lessened by the perception that caring jobs are poorly valued? If such a perception does exist, how might it best be overcome?

The nature of the work of disability support staff may not in itself be attractive enough to appeal to many school leavers and those looking for a career change in later life. The work itself can be highly complex and carry significant risk, especially when supporting people with severe challenging behaviours or people with complex medical support needs. Greater provision for training support staff is vitally important at present, providers are limited in the amount of training that can be provided due to cost pressures.

Recommendation: the Agency should consider making additional funds available to encourage providers to train support staff – especially those working with people with complex support needs.

What scope is there to expand the disability care and support workforce by transitioning part-time or casual workers to full-time positions? What scope is there to improve the flexibility of working hours and payments to better provide services when participants may desire them?

The conditions under the NSW SCHADS Award are not consistent with the aims of the NDIS. Pay rates, minimum hours and overtime rules are stifling the capacity to meet the demands of participants and the increasing expectation for more flexible support.

It should be clear that there is no suggestion that the hourly rate for support staff should be reduced – this would have the effect of further discouraging people looking to join the workforce. However, the pricing policy of the NDIA is such that provider organisations are not able to employ or keep experienced, skilled staff AND remain viable.

The demand for more flexible supports is creating greater demand for casual rather that permanent staff. The uncertainty that providers are managing around the variable hours in NDIS plans is adding to the pressure to reduce its cohort of permanent full time staff, not increase their numbers.

QUESTIONS PAGE 26

Are prices set by the NDIA at an efficient level? How ready is the disability sector for market prices?

The prices set by the Agency are inadequate to allow many provider organisations to remain viable while managing risk. While this organisation has made many structural changes to reduce its operating costs, the NDIA price for many supports is too low. This low pricing encourages providers to reduce quality, stop training and recruit low skilled, inexperienced staff. This in turn, increases the risks for providers, staff and participant alike. The current pricing schedule is not set at a level that encourages efficiency, in encourages a driving down of the quality of supports available to participants while at the same time exposing them to increased risk of harm.

How ready are providers for the shift from block-funding to fee-for-service?

The shift from block funding, would be less challenging if the price for services were more in keeping with the cost of service delivery.

QUESTION PAGE 27

How well-equipped are NDIS-eligible individuals (and their families and carers) to understand and interact with the scheme, negotiate plans, and find and negotiate supports with providers?

Prior to the roll-out of the NDIS to this area, we committed significant resources to prepare service participants and their families for the new scheme. However, despite best efforts, families have struggled with the transition to the NDIS.

The scheme is undergoing almost constant change and the communication from the Agency has been patchy at best. It is common to for families and providers to be given conflicting advice from the agency in relation to what can and cannot be claimed under the NDIS. This is especially the case in relation to transport and activity costs.

The instruction provided to people with a disability and their carers at the completion of the planning process is very poor - participants and their carers are often unclear about what actions they need to take to activate their plan. The flow on effect is that providers are left unaware that a plan has been completed and therefore delays occur in the negotiation of service agreements and the ability for providers to make claims for services delivered.

The time spent by support staff in assisting participants and their carers to navigate the complex system is significant and should be considered as they are often “unbillable hours” of support delivered. Participants and their carers have indicated that they are not able to obtain helpful advice from the Agency or LACs.