Submission No 244

INQUIRY INTO IMPLEMENTATION OF THE NATIONAL DISABILITY INSURANCE SCHEME AND THE PROVISION OF DISABILITY SERVICES IN NEW SOUTH WALES

Organisation: Empowerability Inc Date Received: 9 August 2018

Thank you for the opportunity to make a submission to the Inquiry into the implementation of the National Disability Insurance Scheme (NDIS) and the provision of disability services in New South Wales. EMPOWERability Inc. (EAI) is a not for profit organisation who have been providing support services to people with a disability or who are aged for 25 years and has been operating under the NDIS since the launch of the trial site in NSW, and continues to support the ideologies of the scheme.

EAI has seen some great examples of individual participants achieving fantastic things with the support of their NDIS plan, however these individuals tend to have more mild/moderate support needs and under the NSW disability services system fallen through gaps and were either ineligible for service or placed on long wait lists. This unfortunately, does not appear to be the case for many individual participants with high and complex support needs.

EAI has also experienced significant operational issues and financial burdens as a result of problems related to the implementation and management of the NDIS and as such wishes to highlight some issues for the inquiry to consider. In summary they include:

Inefficient systems and processes which impact on performance of both the NDIA and providers leading to increased administrative burdens
Inadequate pricing leading to the risk of market failure
Issues around workforce capacity and development
Inadequate processes for emergency and crisis situations
Issues regarding the processes and consistency of planning and review for people with complex care and support needs

Inefficient systems and processes which impact on performance of both the NDIA and providers.

The ongoing changes associated with the implementation and delivery of supports within the scheme continues to place administrative burden on providers. There continues to be portal outages, issues with billing and service bookings. Further to this, the implementation of the quality and safe guard’s commission requirements has added to the administrative expectations.

There is a constantly changing playing field with ever increasing expectations on providers, with little or no financial compensation to do so. At times, along with other providers, there has been extended wait periods exceeding months for payments for services already provided under the NDIS. There have also been increased expectations on organisations to provide unfunded support to participants and their carers with planning and implementation, together with general support. This gap was filled by case management services under the previous NSW disability support system.

The extra cost to organisations of this additional administrative burden has seen many forced to close or discontinue providing NDIS supports. It has created a culture where many organisations are choosing not to support individuals with high and complex needs as the inadequate pricing model fails to cover the costs of providing these supports.

There has and continues to be major issues with communication and the NDIA. There have been delays with accessing the call centre number, emails to designated addresses go unacknowledged and there is no way of directly speaking to a person at the local NDIA office unless you physically attend the office and even then, the receptionist wants to take a message. Often the call centre operators have no knowledge of issues and when messages are left there is no return contact. EAI believes, as a provider that inefficient communication and communication pathways has been the most difficult area and biggest failure of the scheme and its staff.

Inadequate pricing leading to the risk of market failure

EAI has major concerns regarding the inadequate pricing structure of the NDIA, with particular regard to 1:1 supports for people with high and complex support needs, leading to market failure. It takes a phenomenal amount of time and administrative work to provide this service to a quality standard, taking into account staff awards and allowances, support requirements and family support needs , particularly in the case of participants with complex needs, where often there are no informal supports in place.

Whilst EAI recognise that as a result of the Mckinsey & Company independent pricing review report, the NDIA have made some changes to the price guide, the new pricing structure, however, still fails to cover the cost of providing 1:1 services. EAI is also concerned about the definitions that are still to be clarified with regard to application of funding at a standard level of support and at a complex needs level. In our experience, in a great percentage of cases, the staff who are supporting participants at the ground level and are working to meet the needs of individuals have a different understanding of the support needs to LACs and planners who may not have even met the participant. This results in inadequate funding being allocated to participants plans to cover supports that are safe and meaningful.

The ever increasing expectations on the providers have resulted in organisations subsidising the scheme for the past 3 years. This is unsustainable for any business model. This has resulted in the withdrawal of provision of 1:1 services by many organisations and has and will continue to result in the inability of participants, particularly those with complex needs, to access appropriate services and has lead to limited choice and control for participants when utilising their plans. If the administrative expectations on providers continues to increase and prices remain inadequate, this will eventually lead to the ultimate failure in the scheme and worse, see the most vulnerable members of our community left without essential services.

Issues around workforce capacity and development

In our experience the two major concerns relating to workforce issues continue to be the inadequate pricing from the NDIA not providing for ongoing training and development of staff and the casualisation of the workforce.

Traditionally the disability sector has always been understaffed and a less attractive industry than many other industries. With the increase of funding into the sector with the introduction of the NDIS, there is a challenge to successfully recruit and maintain quality staff. The NDIS funds do not provide for assistance with this challenge as there is no funding for training and ongoing development, therefore resulting in limited opportunities for progression of careers.

The transient and vulnerable nature of the market mixed with the juggle of pricing and award coverage has led to an aversion to offering permanent part time positions to support staff and in turn many organisations are casualising their workforce. This presents significant issues for staff in managing their personal commitments, and also to providers in maintaining staffing levels as staff seek other permanent options. This results in further administrative work due to the continual need to locate suitably qualified resources.

Inadequate processes for emergency and crisis situations

Under the previous disability systems, when an out of the ordinary or emergency situation occurred there were several options that individuals could access to ensure that their support needs were met for the entire duration of the situation. There were funds available through Carer respite programs, ADHC emergency funds and providers often had some one off funds available to assist.

These services are no longer funded. The advice from the NDIA is that providers should deliver the support, utilise the participants plan (if they even have funds available) and then get the participant to apply for a review due to a “change in circumstances”. Our experience to date, is that an unscheduled review, even in an emergency or crisis situation, can take anywhere from 3 to 9 months. Furthermore, if a participant has no funds in their plan at the time of the crisis, providers are either required to carry that debt for months or the participant is left with no supports. This has led to individuals being left at the hospital, with providers (unfunded) or even in the situation of homelessness. This is a situation that no individual should be placed In, especially someone who requires additional support.

Issues regarding the processes and consistency of planning and review for children and people

with complex care and support needs

We have and continue to experience issues regarding timely and accurate communication with the NDIA at all levels, and in particular regarding participant’s plans and reviews.

We have seen over the last 8 months, a deliberate decrease in core funds allocated to children and young people under the age of 16. This has been explained on several occasions by the NDIA, “as the responsibility of supports for this age group falls on the parents”. This approach fails to make consideration for many issues

Children and young people have had core funds allocated in their last 1 or 2 plans, often at the suggestion of NDIA staff and they and their carers have managed to get routine supports in place that are meeting individual goals and increasing individual skills. This has also allowed children of working parents to set up and attend therapy sessions that have been funded through their plans, without parents needing to take time off work.
Children with complex needs require a significant amount of supervision and support, whether that be physical assistance or assistance with behavioural support. Families in this situation have a higher rate of breakdown and many are single parent families. The children require 24 hour supports and the families are exhausted. Carers are often unable to sleep due to overnight support needs. The NDIA’s answer to this is that the parents / carers receive a break whilst the child is attending school. In most instances the reality is that some are not able to attend for the entire 6 hrs due to physical or behavioural needs. If they do, those short few hours that their child is at school, they need to complete chores that most of us can do whilst our children are home. Not to mention the need to shop for essentials, attend appointments, look after other children (some of who may also have a disability) and need to earn a living.
Another of the NDIA arguments is that parents/ families can access mainstream supports such as out of school hour’s care and vacation care or attend therapy out of hours. Majority of mainstream services are unable, or in some cases, unwilling, to provide support that safely and adequately addresses the needs of children with complex support needs. We have seen many instances of children not being accepted in programs or being sent home from the program everyday due to their complex support needs. There is also a gap in this area for children who are over 13 as there are no out of school hours care services available and obviously due to their support needs these children are unable to stay at home alone like some of their peers who do not have a disability.

Many Participants with high and complex support needs, particularly those with complex challenging behaviours, have been receiving inadequate plans. In our experience the tool that the planners are using does not accurately capture the levels of support required for complex behaviours, nor does the plan review process. Often planners have little or no understanding of the participant and their needs other than the information the LAC has documented. The planner, in most instances, does not ever meet the participant and often the LACS do not either. The process therefore is reliant on carers or support persons accurately articulating the exact supports that are necessary. There are major gaps in the knowledge/training in complex needs by Planners.

Those with complex care and support needs will generally require high levels of support for the entire duration of their lifespan, just to maintain current skills and/or mobility, and to prevent regression.

There appears to be major inconsistencies in understanding what is reasonable and necessary from planner to planner and there are major inconsistencies when planners are deciding what levels of funding a participant should receive i.e. standard or high and staff ratios. There is no consideration of feedback from providers about the participants support needs, when they are actually the people responsible for meeting the support needs of the individual and keeping them, the staff and other members of the community safe.

There have also been major issues with request for internal reviews. We have found this to be an issue across service providers also. We have lodged a large numbers of reviews on behalf of participants, mostly due to inadequate funding attached to plans. These reviews have taken anywhere between 3 and 9 months and in some instances, have never actually occurred, or even been responded to. Participants have gone without services for anywhere up to 4 months due to the review not being actioned and the NDIA staff advising they continue to utilise their plans until they can complete the review. This has had an enormous impact on the individual’s progress and their carers.

Complaints / accountability of the NDIA

There are some major concerns regarding the complaints process set out by the NDIA. There is no specified process for providers and for participants the guidelines are difficult to navigate. EAI have lodged complaints and we are aware of many others where these have not been acknowledged let alone acted upon. There is little to no transparency in the way in which the NDIA approaches decision making and there appears to be no accountability for poor performance and transgression by the staff of the NDIA.

The planners within the NDIA are responsible for making decisions that have a significant impact on the lives of participants and their families. They carry a position of power and there needs to be a process by which they are held to account in the very same way that providers of disability services are. Perhaps a distinct department within the NDIS Quality and safe guard’s commission should be established to handle complaints about the NDIA staff and NDIS processes.

We would like to thank you for your consideration of information provided in this submission and would like to welcome the very timely inquiry into the implementation of the NDIS and the provision of disability services in New South Wales. This submission has provided an overview of the issues being experienced by the scheme and references general examples we are seeing regularly. We have engaged continuously with NDIA since commencement and have a significant amount of detail recording the specific circumstances referred to more generally in this submission. We would welcome the opportunity to meet and discuss this level of detail and demonstrate that there are systemic issues and this is not a case of self-interest. We are committed to the long term success of the scheme and the potential it has to provide a much better level of support to people with disabilities. Our interest is absolutely focussed on that outcome and providing the review with full transparency of the issues being faced by services such as ours, can in our view only add value to the final outcomes.

Should you have any questions in relation to this inquiry or would like to receive additional information, please do not hesitate to contact me on or

Kind Regards

Narelle Dale

Chief Executive Officer