Experiences of Disability Sector Businesses

Submission No 245

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

Organisation: The Business Centre Date Received: 9 August 2018

INTRODUCTION

The Business Centre is a not for profit Business Advisory service based in the Hunter region of NSW and servicing the Hunter, Central Coast and Mid North Coast regions. The Business Centre has been supporting businesses from across the disability sector to start - up, scale or modify their business models within the NDIS reform since the beginning of the NDIS trial period in 2013.

We submit this report based on our experiences as Business Advisors to people looking to enter, maintain or grow within the disability sector as well as on the data from a survey which author Chantelle Robards created and distributed to her online NDIS Provider Community (around 2700 people) which she has developed and supported over the last 3 years. This has given us the opportunity to present both quantitative and qualitative information to the inquiry.

We have included large portion of the comments which Providers so generously gave and we ask that the Committee take the time to read each one. While we believe our observations and quantitative data to be revealing and informative it is the comments that carry the emotional impact that this reform is having on the workforce and Provider segments of the sector. We believe that addressing these areas is critical to ensure that we retain existing providers as well as attracting new ones.

ABOUT THE AUTHORS

Chantelle Robards is a speech pathologist and Business Advisor with The Business Centre specialising in supporting businesses operating within the NDIS sector. She also runs her own business, A Simple Warrior which offers clinical training and support to businesses in the disability sector. She has been working within the disability sector since 1996 and has been engaged with the NDIS reform since the beginning of trial in 2013. She is one of the administrators of the (Facebook group) NDIS Provider group Disability Community of Practice Australia which currently has 2435 members and has been actively advocating for a strong and successful reform since its inception.

Steve Wait is the Chief Operations Officer at The Business and is responsible for the planning and directing of all operations of The Business Centre. Key areas of responsibility include day to day operations across sites and service delivery centres, program management, administration including; finance, accounting, human resources and information technology.

THE NDIS MARKETPLACE

The NDIS reform was created and rolled out with the intention of growing a vibrant and dynamic marketplace from which people with disabilities could make informed choices about who would deliver their support. It is our view that the market should be viewed as an equally important stakeholder in the reform as without a successful functioning marketplace the whole philosophy of choice and control the Scheme will fail and Participants will return to having just a few Providers, if even that, from which they can choose to access their support.

The Business Centre has developed a unique insight into SME’s and the NDIS given the Hunter area was where the initial pilot of the NDIS was trialled. The Business Centre through this experience acts as a Lead Provider of Business Advisory Services within the disability sector to other Business Enterprise Centres across New South Wales.

Like Participants, Providers are operating within the reform on the frontlines. They see the day to day wins and the day to day challenges that the reform brings, yet it seems that their voices are rarely heard. This is particularly true for the small business segment of the market.

Providers are often perceived as conflicted in their advocacy for a successful NDIS because their livelihoods depend on the funding that is approved in NDIS Plans. The narrative of Providers as ‘money grabbers’ is commonly pushed by representatives of the Agency as well. However what is completely and routinely dismissed is the overwhelming knowledge, skill, experience and history that many workers, providers and professionals are bringing to the table and conversation. The fact that so many in this survey indicate that they are close to walking away conveys the pain and frustration that they are feeling yet this does not seem to be heard by those who can make a difference.

It is paramount that the Provider sector are supported to establish, maintain and grow given the high barriers to entry and the opportunity lost to the market of motivated new entrants and retaining quality providers who could be (and indeed are being) a significant loss to the Scheme.

REPORT SUMMARY

The information contained in this report is primarily based on the data and comments provided in our survey as detailed in the next section.

There are several themes which persist throughout the survey responses.

1.  Providers are stressed, tired and hurting.
   

Many Providers express marked stress and anxiety associated with a system which is struggling to find its feet. Most alarmingly the data tells us that only 55% see themselves as continuing within the sector for another 2 years and 36% of businesses are considering deregistering.

2. The workforce issues are significant and growing

Providers report almost universally poor knowledge and experience of Local Area Coordinators and Planners and extreme difficulty in recruiting qualified and experienced support workers and allied health professionals.

3. Rural areas are struggling

According to most reports the predicted ‘thin’ markets have not yet materialised however the view of Providers is that this is not accurate. Providers who service these areas repeatedly comment that it is becoming harder for people in these areas to find registered providers and changes to the way that travel funding can be claimed is presenting even more challenges.

While the data regarding registered providers may be quoted when making these conclusions it is important to recognise that not all registered providers are actually providing services with many moving out of the NDIS market or out of business altogether.

4. Commonwealth and state based services are not playing nicely

There are wide gaps in the systems in which people with disabilities are becoming stuck. Providers indicate a lack of comprehensive knowledge of what the state based systems offer and report a ‘pass the buck’ attitude from both parties.

5. The most vulnerable groups - children and people with complex support needs may not be better off

Providers report marked frustration with children stuck on waiting lists and responsiveness to crisis periods for people with disabilities almost non-existent as well as significant discrepancies in funding levels in Plans even for people presenting with very similar support needs.

6. Poor communication and unpaid administration time continue to affect business viability

Providers continue to report their frustrations in obtaining accurate and responsive information from the Agency and report many hours of lost time in chasing things up. Plan gaps are becoming more frequent and pursuing payment for unsuccessful claims (often due to something that the Agency changed) can take months affecting cash flow and viability.

OUR DATA

A survey was created and published via social media and email in order to obtain the perspective of Providers on the status of many of the items in the Terms of Reference for this Inquiry. 300 responses were provided at the time of the completion of this submission.

The aim of this data is to provide evidence to the inquiry of

1. what we believe to be significant vulnerabilities within the market
2. the views of people who are working and engaging with the coalface of the NDIS on a daily basis Data from the various sections of the survey will be inserted to this document to the relevant locations.

Of note, the survey was reasonably lengthy with 29 questions, many of which had sub-questions and there were opportunities to comment throughout. As such we expected a low return and completion rate. In actuality, the survey was posted at 6pm Sunday evening and 200 responses were submitted within 12 hours with an 80% completion rate and extensive comments. This tells us that Providers strongly want to be heard and were willing to give significant time to voice their experiences and concerns.

ABOUT OUR SURVEY RESPONDENTS

Our survey was completed by people from across Australia with the largest number, 61% from NSW.

62% of respondents are business owners with 68% either sole traders or owners of an Australian Company. Another 24% work for non-government organisations.

The vast majority, 88%, are NDIS registered providers.

The largest proportion of supports that respondents offer include 83% of respondents offer allied health supports; 31% offer Support Coordination; 25% offer Behaviour Supports.

81% of respondents have been working within the NDIS system for more than one year with 30% for more than 3 years.

TERMS OF REFERENCE

(a) The implementation of the NDIS and its success or otherwise in providing choice and control for people with disability

Choice and control is supposedly at the heart of the NDIS philosophy.

We asked Providers to rate on a scale of 0 to 10 their view on how successful the NDIS has been in delivering Participants choice.

Choice

4.6 / 10

Providers feel that the NDIS is not delivering the promised choice to Participants. The main barrier in the view of Providers is inappropriate funding levels in Plans. This may mean that a Plan contains insufficient funding for the person to access the support that they want or funding in the Plan sits against the wrong budget item which results in the Participant being unable to use that funding for the type of support that they want.

Providers also note that the geographical location of both the Participant can limit their ability to choose their Provider especially when the ability of the Provider to claim for travel is limited. They also note that there are often incorrect assumptions about the capacity of a Participant to make their own choices and so choices are made for them. There can also be a lack of support to Participants to connect with appropriate Providers.

Similarly, we asked Providers to rate on a scale of 0 to 10 whether the NDIS is delivering the promised control to people with disabilities.

Control

3.6 / 10

Providers view that the promised Control is not being delivered to people with disabilities. From their perspective the key barriers in this area include inappropriate funding levels in Plans, the way that Plans are managed, the skills of the Support Coordinator and the capacity of the Participant.

THE IMPACT ON THE MARKETPLACE

The immediate flow on to the marketplace when Participants are not supported well to exercise their choice and control is that Providers step in to support the process, often in an unpaid role or funds are used to support the process reducing the available funding for other supports.

There can be wastage of Plan funds when a Participant connects initially with a Provider who is not best matched to their needs leaving insufficient funds for the Participant to use with the Provider they try next. This leaves a Provider in the tough spot of either providing supports for free or having to turn the person away which they may find ethically impossible.

The flow on from this is emotional and financial stress which is represented in our Workforce data later in the submission. Our data implies that Provider / worker retention within the NDIS reform is at significant risk.

Many Providers have expressed that support in how to effectively and efficiently operate a business has been of assistance however this alone is not enough with the structure and administration burden of operating a business within the NDIS market causing poor business viability in many instances.

WHAT PROVIDERS ARE SAYING

‘ There seems to be no consistency with planners and outcomes vary greatly. Participants are being left to pay their own therapy needs due to lack of hours for those with high needs and ongoing therapy requirements. Requests for review are not seen as urgent for high needs and do not get through the system in a timely manner.’

‘ Travel funding is a major barrier to providing services to participants. We cover a large rural region due to the fact that participants cannot get services and with the way travel is now funded we will be pulling back from providing this service’

‘Rural area with no considerations for low participant levels. Serious conflicts of interest between state funded health services and NDIS funding blurring lines’

‘Planners have frequently made decisions not to follow professional advice and make less expensive but inappropriate decisions for a participant.’

‘Several of our clients have been told they could not be self-managed or that they needed to attend a certain EI program by their planner denying the family choice and control.’

‘I’m in a regional area and though the market is thin here (despite the NDIA repeatedly saying this is not the case) - I feel like the major barrier has been the assumption by the NDIA that people will just be able to manage their NDIS packages without the need for capacity building. I still regularly have people come to me, some on their 3rd plan, with no idea what they can do with their plans. When I began my business a little over 2 years ago there were more services here. Now there are less, and I can’t help thinking that if people knew how to spend their money, more businesses would have been viable and remained in place today.’

‘Assumption around the capacity of providers to absorb and sustain the additional administrative load e.g: letters of support/ planning meetings and reviews/ phone contact with support coordinators LAC Planners other support Allied Health Training and support of necessary admin support and ongoing PD’

‘Being given money in separate sections, so you may need equipment you can’t get approval for but have lots of money in Core Supports that you can’t use up’

‘So many of the most vulnerable young people with families who are not resourceful do not have plans because their parents don’t know or have the capacity to engage with the NDIS. They need supports but have no plan. The ones that absolutely need the support we offer are not able to get it.’

‘Am getting very mad at seeing the discrepancy in plans between non-English speaking participants/participants whose carers have limited education and/or cultural experience of Australia, and participants whose carers are well-educated, English-speaking.’

‘Barriers to accessing the scheme with no support e.g. CALD families, when the parents also have a disability or mental health issues, low socio-economic/educational factors- Parents don’t understand the ndis and/or are completely overwhelmed in how to apply. Also people missing out on access or underfunding in plans because they cannot afford to access regular cognitive or autism assessments to confirm severity levels. Poorly trained planners Terribly trained LaCs and ECEI’s and the “Chinese whispers” planning style where they are just glorified info gatherers and the planner has no contact with the participant. Not enough ECEI’s so kids are missing early intervention and access to the scheme.’

‘The restrictions placed on funding and categories as well as NDIS/NDIA personnel executing power over eligibility and uneducated translation of participants needs, are significant negative impacts on true choice and control.’

(b) The experience of people with Complex Needs in developing, enacting and reviewing Plans.

We asked the Providers whether people with Complex support needs were better off under the older system of Block Funding. They rated this on a scale of 0 (block funding) to 10 (NDIS funding).

Are People with
complex support
needs better off
under the NDIS?

3.7 / 10

Providers do not believe that people with complex disabilities are better off under NDIS funding.

When we drilled down into how the NDIS processes affecting people with complex support needs are performing Providers believe that the biggest barrier is the ability for people to have their Plans reviewed quickly in times of crisis. System lag and uneven communication and response times place a heavier burden on SME’s already strained in regards to cash flow and associated costs required to administer client transactions.

See the table below for more information.

THE IMPACT TO THE MARKETPLACE

The flow on effect of these breakdowns to the market are similar to those mentioned for the impacts of the implementation of choice and control.

Providers do their best to backfill the gaps in advocating for Plan reviews and connecting people with appropriate supports which is often work that they are unable to claim for. People with complex support needs often have the least capacity to self- advocate or independently seek and find the right support for them.

There are reports of lots of push and shove between the NDIS and state based systems for this group. For example, people with complex support needs often also experience impacts to their health (often related to the disability itself) and it can be extremely difficult to pull the health and disability components of their situation apart. Traditionally many of these issues would be managed and supported by the disability sector which enabled a holistic view and approach to solution finding

and appropriate linking with the Health sector to resolve the medical aspects of any complications. Now, Planners often with no knowledge or experience are drawing a line under anything that remotely implies that a condition may be health related and are refusing to allocate funding into NDIS Plans for that support.

It is not unusual for a Planner or Local Area Coordinator to redirect a Participant back to a state based support system based solely on a perceived ‘diagnosis’. One very contentious area right now is the area of swallowing disorders, where by a person’s swallowing is affected by their disability making eating and drinking unsafe and severely limiting their ability to participate in their daily lives. While it’s true that the implications for poor management of this include poor health outcomes, stripping this one challenge for a Participant away from the underlying cause and sending the support and management to a separate system makes no sense. In NSW this was almost always managed by professionals within the disability sector and so this is where a huge amount of the expertise and skill tends to sit. Funding for this service has been handed to the NDIS, has been funded by them for the last few years but now supports are being diverted back to the state based Health system. Businesses who have specialty in this area and have been providing services under this part of peoples NDIS Plans are finding that their customer base is shrinking and some have even closed their doors.

Complex and challenging behaviours present with similar issues. Crisis situations need to be responded to extremely quickly in sudden and often temporary increases in Plans and staffing resource. Providers can quickly find themselves unable to safely support a person. There is a lack of availability of a provider of last resort for these people. The most significant risks to Participants are that they end up in acute health care, homeless or in custody when support is unable to be deployed efficiently.

WHAT PROVIDERS ARE SAYING

‘There is a lot of buck-passing between NDIS and NSW Health. Both sides are poor at taking responsibility. Resulting in people being stuck in hospitals because they can’t get their ndis funding, and patients not getting appropriate care in hospitals.’

‘The biggest issue for all participants is inconsistencies in their plans and the huge degree of uncertainty as to whether or not they will be able to maintain services from year to year as plans get reviewed’

‘This is my biggest fear watching my clients of government departments receive their plans. Ending up with new grad providers, no one talking to each other, children and adult pwd DYING as a result. Disgusting.’

‘I work mostly with complex cases. There are families who haven’t accessed the scheme at all for their kids who previously accessed state funded services and should have been rolled over but weren’t- these kids go to SSP schools and are along the most disabled kids in the state. There should be access to dept of ed records so those with ID, etc don’t have to keep proving their severity- this is down internally for school funding purposes. These participants and families are over represented in poverty statistics, he they’re expected to renew assessments every 2 years or get a baseline plan. Severely Disabled kids are having Core supports cut based solely on age, not support needs, risk factors, family capacity, etc considered even though this is stated in the Act. Then they face a whole year waiting for a review that doesn’t happen. They aren’t getting help to implement therapy strategies, they aren’t learning to access the community safely and they’re turning into older kids and teens with higher support needs and more entrenched behaviours as a result.’

‘People are worse off in this inflexible system and unresponsive system. They are waiting far longer to receive services and equipment even in high risk situations’

‘For me, as a Social Worker, there’s a huge push for PWD to access Medicare for psychological support. This is not necessarily suitable for those with complex needs and differentiating between psychological disability and mental health is extremely challenging. PLUS that only allows for 10 sessions, doesn’t allow for funding for detailed reports and assessments and will almost always require a gap payment. Then, after 10 sessions the PWD may need to move to another Therapist, if the current one is not NDIS registered. This goes against the development of safe Therapeutic relationships, which are paramount. no choice and control for clients, and most can’t afford the gap payment, so they miss out altogether’

‘NDIS is completely unsatisfactory for severe and complex mental health. Many Participants of state based schemes now have no supports at all. Many Providers will not support MH Participants. All Providers for MH should be separately accredited and acknowledged especially CoS and should be given higher rates due to difficulties supporting client group’

‘I don’t have the energy to explain it. :(‘

‘Planners have no experience and do not understand the needs of complex clients and they fail to consider our professional opinion and experience within the disability field.’

‘NDIA is pushing what it can off to the health system. LAC’s have absolutely no experience or qualifications - I have met many who were working at Woolworths the week before! Planners are ignoring the recommendations for supports by allied health professionals and making their own assumptions. This means people receive lower funding. The planners and LAC’s also don’t seem to understand that just because someone presents well at a meeting, does not mean they are not complex with a number of complexities around their diagnosis.’

‘mealtime management plans and swallowing assessments are being excluded from plans which is dangerous to participants. Participants needs are not being met - e.g. communication devices. Providers are not listened to and funding is not being allocated appropriately. Participants are being denied support coordination, which prevents the participants from using their funding in meaningful ways (and making sure they know how to use the funding to get what they need). Participants are not being given support to link in with services, which can be overwhelming for participants and their supports. Providers’ clinical judgement for necessary supports are not being listened to by unskilled planners and LACs’

(c) The Accessibility of Early Intervention supports for children

The Early Childhood Early Intervention partners approach seemed to be a well- intentioned way to ensure that any ‘at risk’ child had a pathway to some early intervention while assessment could be completed to determine their eligibility for an NDIS Plan. This is how the state based system in NSW largely worked prior to NDIS, albeit with lengthy waiting lists.

We asked the Providers to rate whether children with disabilities were better off under the NDIS.

Are children with
    disabilities better
     off under the
    NDIS?

    4.5 / 10

Providers report that they feel the biggest areas of challenge for this part of the reform are the lack of support options for children who are not deemed eligible for a Plan, the crossover between the NDIS and state based systems is inefficient, availability of intervention options for children while they are waiting for eligibility or their final Plan and the difficulty in obtaining time sensitive equipment and technology for children.

Providers also report that during the period when ECEI Providers could be Partners and Providers, referrals to their businesses for children in the 0 – 6 age group radically reduced.

Children have also been negatively affected by the entry ‘caps’ to the intake of ‘new’ people with disabilities to the NDIS. Children make up a significant number of newly diagnosed people with disabilities for obvious reasons. There have been situations over the past two years where children were deemed eligible for an NDIS Plan but were forced to wait for their Plan until a new batch of places was opened. This can have severe effects for this group for whom evidence quite clearly shows the earlier the intervention the better the outcome, families at their greatest need for support and information and a highly skilled group of Providers out there willing and able to deliver services. Paediatricians anecdotally report that they are seeing more anxiety in parents, spiking of preventable and manageable worsening of some features of disabilities primarily due to the inability of the Early Childhood process to be as responsive as it needs to be.

There is a greater financial burden for parents to obtain assessments and proof of diagnosis that used to be possible to obtain in many cases through state based government and non-government services. The NDIS also requires in many cases that diagnosis is re- established at age 7 so parents can be up for this cost more than once.

There are many cases where the NDIS Planner will inform the family that some of the supports that they see as reasonable and necessary and working towards the goal for their child fall under ‘parent responsibility’ and therefore will not be funded. One example was a parent of a child with a severe and complex disability who cannot be supported at a standard day-care centre being denied in- home support because it was ‘parent responsibility’ to care for her child. This meant she would have to give up work and sell her house which seems to be the opposite of the economic outcomes that were part of the mission of the reform.

THE IMPACTS TO THE MARKET

There have been many positive outcomes for children and the market in the area of Early Childhood. Many children who had previously been on waiting lists have finally received funding to access support which has in turn facilitated growth in the private allied health intervention market. Providers have had to learn how to network and market their services to ensure that they were on relevant referral lists and to offer innovative and agile services to meet the needs of the market. This in turn has placed some pressure on larger organisations to so the same and has made recruitment in the Allied Health space more difficult as many experienced staff have moved to the private sector.

In NSW the transition through the ECEI Transition Partners and now the ECEI Partners has had impacts unique to the state. The Transition partners were also often Providers of various supports and this led, in the view of a number of other providers, to a reduction of referrals external to those agencies. The new Early Childhood Transition providers are now mostly stand- alone Providers and are in the marketplace with everyone else as the new ECEI Partners take up the Planning role. There seems to be a significant gap right now for Planning for children as in some cases the ECEI Partners have not yet begun to intake to their new service over a month into the new financial year. For a newborn baby and their family this time is crucial.

Providers in NSW who have developed specialist skills in supporting babies and young children and who have not been working with the ECEI Transition Partners have reported that their referrals for this group have dropped significantly since the ECEI process began. Plans are being inconsistently funded even for children who are presenting very similarly. This requires high levels of flexibility and agility for Providers in delivering the most efficient services possible with whatever funds are available. Sometimes this means that interventions are not being delivered as comprehensively as would be optimal.

WHAT PROVIDERS ARE SAYING

‘It has been a huge upheaval of service provision in ECEI services. Our service acted as a transition partner and supported families already in our block funded service to transition into the NDIS through planning and early service provision. Staff took on a huge amount of extra work to write plans for families whilst still trying to provide our regular EI service. We are now solely a service provider. All the usual referral pathways have been disrupted and there is uncertainty around job security for our very skilled and talented educators as groups are not really viable for our service under NDIS funding. It is still early days so not sure what the outcome will be. Many families are overwhelmed with the responsibility they are faced with in making decisions when they are still at the very beginning of their ECEI journey. Many children however are now accessing levels of therapy they were never able to receive under block funding …. many therapists are unable to accept any more referrals’

‘Availability of providers is at best patchy, many clinicians have limited experience (and being in private practice) limited professional development opportunities. People in rural and remote australia are also significantly disadvantaged under the NDIS as they have extremely limited or even no access to supports and services due to issues of funding and distance’

‘Absolutely no collaboration between ECEI partners and other providers in this area (Bathurst) and unbelievable conflict of interest’

‘We have had a significant decline in 0-7 caseload as our ECEI partners referred to themselves and did not inform families of choice.’

‘Again - blatant inconsistency with children with low level needs getting excellent and appropriate plans when they have a good advocate, and other children with his support needs and obvious life-long disability getting completely inadequate plans.’

‘Rural distance and lack of specialised services in northern NSW is appalling’

‘In my experience with ECEI partners locally I have observed plans being entirely used with ECEI providers after providers have told participants they can only use them. There is very little contact with providers outside of the ECEI service. The original ECEI service has struggled to build a business plan in the NDIS marketplace. There is now a new ECEI provider. Participants (with plans) and their families are being given the impression that they ‘must’ move over to the new ECEI provider, away from know therapists etc. I think there is an enhanced risk for participants in the ECEI stream to be disadvantaged when it comes to choice and control.’

‘Outcomes are also dependent on the skill set of the Practitioners Families have insufficient advocacy support during information gathering/ insufficient funds for initial assessments and review assessments/ insufficient representation / capacity to navigate the system when rejected.’

‘Families of children under 5 are paying out of pocket to pay for private therapy support for more than 6 months following access/eligibility to NDIS, usually after 6-12 months of waiting for a paediatrician and diagnostic appointments. Public services are extremely limited to NIL for thee children. Early intervention is not early enough and far longer than previous state based system.’

‘We have numerous children waiting since last year for vital equipment. Others sit in the queue to access the NDIS for so long that it seems more accurate to describe it as middle childhood late intervention!’

‘Huge conflict of interest with ECEI’s also being provider orgs. Kids are having service agreements signed with ECEI’s to sign them up to that service- and have even criticised other services parent indicated they were with privately and would choose under ndis. In 3 years I’ve only once had a referral made to me by an ECEI- and that was because the child was red flagged with FaCS and had sat in the ECEI service’s wait list for three years even after an assessment. Kids are missing out in early intervention or getting inadequate amounts e.g. Kids with Down syndrome only being allocated enough for speech but no physio, OT or Key Worker funds despite being non-verbal, feeding issues, not crawling at 2 yrs. kids with

autism who can speak also not seen as “disabled enough” but no alternate supports provided or referred to.’

‘I’m a little biased by my rural location. None of my ECEI participants can access all the range of services they require in my location(s). Some travel for other therapies, some have therapists travel distances to see them. NDIA seems to have done nothing about building capacity to meet demand, despite lip service.’

(d) Oversight and Regulations

We asked Providers how well they thought that current (pre - NDIS Commission) regulations and oversight were ensuring the delivery of safe and high quality services.

Are current regulations ensuring safe and high quality services?

3.5 / 10

Providers do not believe that the current regulation and oversight ensures the delivery of safe and high quality services.

We asked them how the introduction of the NDIS Commission registration requirements would affect their business. The new requirements includes an audit of varying size (depending on business structure) for every single business that wishes to be registered with the NDIS.

Over 60% of respondents felt that the cost of both preparing for and executing the audit presented a threat to their business. Over 60% felt that new policies and procedures would have to be documented. 35% of respondents are considering de-registering.

Less than 20% of respondents felt that the new requirements would make their businesses safer or would lead to higher quality supports.

IMPACT TO THE MARKETPLACE

Better regulation and oversight in the disability industry is welcomed. People with disabilities deserve to access high quality services and to be free of abuse. Their rights as consumers should be strongly upheld and implemented in full.

The new registration processes including the audit present a new challenge for many providers. The new Practice Standards have been designed to ensure that business practices are ethical and conform to the Rights of People with Disabilities with an accompanying policy and evidence trail.

New South Wales businesses are now in a position where they will, over the coming months, decide whether they can make a business case for balancing the resource required for preparing for and paying for the audit is viable, with 35% of existing businesses considering de-registering.

This is an area of cost burden that could most effectively be eased or reviewed to take into account the size of a business and the associated costs of obtaining registration and maintaining registration. Smaller businesses are less likely to have the resources or capacity to complete the necessary audit preparation as a larger organisation yet the expectation and workload is exactly the same regardless of size. We see this as unfair and puts small businesses at a significant disadvantage.

When weighing up this decision the businesses offering Allied Health supports must also consider the possible implementation of the tiered pricing structure that was recommended in the recent Pricing Review which produces an added business risk of therapy prices being reduced, some by 40%.

For people just now looking to start-up a business within the sector, the registration process is less than straightforward. This has potential to act as a deterrent to new businesses and may affect the growth of the market. Anecdotally we are hearing from business advisors across the state that it is getting harder to progress potential new businesses through the new registration process.

Light touch audits are available for businesses who are set up as sole traders with a larger more comprehensive audit required of businesses which are set up as a company. This can potentially influence how people choose to set up their businesses but may ultimately leave them less legally protected.

Ultimately the risk to the sector is a further thinning of the market which will reduce the options from which people with disabilities can choose their supports.

WHAT PROVIDERS ARE SAYING

‘As a senior manager in the service I welcome any new safeguards where people with disability are protected and in receipt of quality services and support. I’m an avid supporter of continuous improvement. However the costs for the organization could be considerable and to date there is no suggestion of any funding to support this work. Under the state system, a system we are very used to now, we at least get some funding towards the costs. A complete review/rewrite and reporting system is going to cost a lot of time and money. It is completely unrealistic for NDIS to expect established services to operate on such low margins. The stress on my staff has been enormous and the whole sector are losing many hundreds of people with great talent who simply cannot work under this pressure anymore.’

‘I haven’t registered for exactly this reason. I am a part time sole provider & cannot keep up with the paperwork expectations.’

‘I have made a strategic business decision to not register - based on many administrative, financial and ethical reasons.’

‘As a sole trader, nothing will change for me or my clients however there will be a lot more work for me. I am already informing families that in the future they will need to change their management of NDIS plans to plan or self managed to be able to continue to use my services, just in case I need to de-register. ‘

‘We work with vulnerable populations, so I am pleased that the NDIS are seriously considering issues of client safety, risk and putting in place audit processes’

‘150% support the commission and the process…. What I don’t support is the inequity of it - it is meant to be scaled to the size of your business but as a small rural OT practice i am looking at $15k for the process…. without counting the time. And for us it is extremely hard not to follow through - anecdotally we are seeing that rural participants are much much more likely to be agency managed than self or plan managed which means for them to have choice they need rural options. I just don’t know if I can afford the cost of the process… it feels made for big business and they want to get rid of the small providers.’

‘We already completed audit in March and have been told to start again in October. This is an outrageous cost of time and money when so many other providers didn’t do their audits as they should have under the old system. It gives them an unfair competitive advantage’

‘The Government changes in who oversees providers and how this done was poorly planned and organised. We underwent this audit this year in February - there was no information about what the Commission were going to do, now because of this change we have to undergo this audit again - why couldn’t the new standards have at least been established and published giving providers the opportunity to do this process once not twice in an 18 month period and pay for the privileged.’

(e) the Workforce

The workforce has long been identified as an area requiring attention as the sector rapidly grows under the NDIS. We asked Providers about their experiences with the workforce.

First, we asked them about their thoughts on what has the greatest impact on the workforce. Overwhelmingly they identified as stress while working with the NDIS as having the greatest impact. General stress and a high turnover of staff were also rated highly. See the full results below.

We also asked them about which roles they felt carried the most challenges in terms of skill level and the ability to recruit to vacant positions. The two most highly identified roles of perceived challenge were Planner / Local Area Coordinators and Allied Health professionals, closely followed by those working with people who have complex support needs.

IMPACT ON THE MARKETPLACE

Further informed by the comments on this section of the survey, a selection of which are below, it would appear that Providers are feeling the impacts of a thin and underskilled workforce. This leaves them unable to meet demand of their customers and is leading to complaints and performance management issues within their teams. Carrying vacancies for extended periods often means that businesses are developing waiting lists or have to send their potential clients to other services which is often not an option in rural areas.

WHAT PROVIDERS ARE SAYING

‘Overloaded staff, high levels of burnout, pressure to bill, quality of service less important than quantity of billable hours and no ongoing training, Networking or supervision for workers on billable hours with large organisations.’

‘We have significant challenges in terms of clinical governance, mentoring and supervision which in turn means there are significant difficulties providing quality training and implementation support to staff such as direct support workers across the NDIS’

‘Support coordination was meant to be provided by people with a degree in the human services. The majority of coordinators working within big orgs do not have degrees or experience. LACS are shockingly inexperienced and unqualified’

‘I am not sure how staff across the board are going to have the opportunity to upskill in the “billable hour “ world. I have great concern that NDIS staff are often recruited as they have an insurance/ money background rather than a disability knowledge base.’

‘Our organization has had to restructure just to simply be able to cover the necessary wage reductions. We have always been lean financially and structurally, but even more so now, which has had a dramatic impact on me as a CEO, and my one remaining manager. We are also struggling with finding the right staff and being able to afford them, particularly in direct support roles - so new applicants are often very young or have English as a second/third language. This means the costs of training and supervision can skyrocket as it has a knock on effect. I am dealing with more performance issues in one year than I have in five years.’

‘Planners, LAC’s and ECEI skills levels are poor and lack accountability for decisions, conduct and errors made. Providers are expected to meet very high (and expensive) standards but those who determine budgets and supports are not.’

‘We have advertised for new therapists and spent over $1000 only to not even receive an application. We cannot even get a new graduate. Currently have 90 children waiting for therapy services.’

‘Skill level of LACS and planners result in plans that are disrespectful to participants and often in breach of basic human rights’

(F) Challenges for Providers

We asked a range of questions to Providers in this section. We started by trying to determine how people who are providing services within the NDIS system were feeling about the current situation and where they felt they were heading in the next couple of years.

We asked Providers whether they were confident in the NDIS.

Confidence in the NDIS 3 / 10

We followed this up by asking Provider confidence in the NDIA.

Confidence in the NDIA 2.2 / 10

We asked whether Providers saw themselves as still working within the NDIS system in 2 years time.

Will be working within the NDIS in 2 years 5.5 / 10

We asked whether they feel that their professional views and input are valued by the NDIA.

Professional input is valued by the NDIA

2.2 / 10

The authors of this submission are not psychologists. However it would seem to us that statistics like this do not lend themselves to a thriving, growing market where business owners are looking for a long term stay.

We asked Providers to tell us which areas were having the most impact on their business. There is really only one area which is not rated as primarily negative – communication with other agencies and providers.

One area that we neglected to ask about in the survey but which has been raised with us anecdotally is that of cash flow. When Participants are in a Plan Gap (between Plans) there is an expectation that Providers will continue their supports. This leaves Providers in the very difficult position of having to continue to pay staff and use resource without the ability to claim for those supports and NO guarantee that these funds will be back paid or added to the new Plan. Providers also report that chasing down claims that have been unsuccessful, often due to a change made by the Agency, can take months to complete. Some small businesses are owed tens of thousands of dollars.

Please see the table below for more information

WHAT PROVIDERS ARE SAYING

Rather than summarise our conclusions on this point we are including the Provider comments in full as they clearly convey the experiences of the market.

‘I am overwhelmed by the amount of reporting that the NDIS requires to support my clients. My recommendations are questioned by unskilled planners and LACs. This negatively impacts on my mental health and the life of the participants.’

‘Big organisations benefit most - automatically get plans sent to them regardless of the service delivered. Some Support Coordinators don’t even meet Participants ever. CoS not trained to do the full job - lots only trained to do Support Connection. No operational guidelines for Support Coordination- Participant loses out. Difficult for sole traders and small business to set up and get new Participants.’

‘Help’

‘The hours we spend ringing NDIA trying to sort out plans is crazy. Lots of unpaid time.’

‘Stress stress stress’

‘Assistive technology has been a huge issue for our clients and is not viable for us to continue to accept referrals in this area. With over 70 years of experience between our senior therapists (small business) we have been told by planners that our recommendations are unrealistic and our experience means nothing. In one case our client was told we inflated the recommended hours to line our own pocket. We are now unable to provide the service they require for basic equipment and therapy.’

‘The price review and two tiered fee structure for Psychologists is unacceptable as there is no evidence that clinical psychologists produce superior outcomes to generalists. Also it is unacceptable that the NDIA do not accept cognitive and ASD assessments from non-clinical Psychologists. This reduces participant choice of providers and costs them unnecessary money to see a clinical psych after seeing experienced registered psychologists. The cost of the audits for small businesses is unviable. The lack of knowledge and the mixed messages and incorrect information participants and providers are given is unacceptable. I have had such a negative experience with NDIS I am deregistering both my multi-disciplinary clinics’

‘After 3 years as a provider I had hoped I would be much farther ahead in business development. I can’t maintain staff as I can only offer casual or part-time work, and even that a is not secure. I can’t take on students as the administrative load of NDIS alone is too

much, with a 1:1 requirement for admin to therapist time. It has taken a huge mental toll and I need to re-assess whether it still in my best interests to stay within the disability sector or move on’

‘I think the NDIS (as they are finding in the construction industry) are not allowing for the mental health issues that this scheme has ‘created’ for providers and participants..’

‘The policies of the NDIA are cumbersome and unresponsive. Feel the need to listen to providers and industry in making systems work efficiently’

‘Free stuff. I do so much free stuff. I wish the NDIA would pay me for all the free stuff I have done. Chasing up mistakes, advocating for people with inadequate plans, Capacity Building for people who need it but have plans that are inadequate ….. on and on. I reckon the NDIA has only survived to this point because of all the free stuff done by registered providers. I know you need to do SOME free stuff in your own business. I have owned lots of small businesses. I have NEVER had to do this level of free stuff in the past. This is my 5th small business..’

‘You can’t provide true support under this financial business model.’

‘I have had to choose to grow my business to to pressures outside of my control I am exhausted and would like to take leave however I cannot afford to do this The pace is relentless I am tired of the demands of peer support and mentoring has placed on my everyday existence’

‘Exhausted and disillusioned’

‘The recent changes to the portal have been much better than expected, but I have still spent 11 hours today (a Sunday - my one day ‘off’) battling with a portal that is far from fit for purpose’

‘I am sick to death of being called a money grabber when as a therapist I make less than a support worker. I’m also frustrated with providers NOT accessing NDIA free training on things like the commission and relying on others for information or they just ‘de’ register. I like the concept of the commission but I get really annoyed at people griping about having to write policies for participants. We work with vulnerable people and we need to protect them and ourselves through best practice.’

‘Could have been a great system with qualified staff in place’

‘NDIA needs to be funded and staffed appropriately with people who are skilled and trained in disability and working with people. This has not been the experience of families who have young adults with disabilities that we interact with and service.’

‘My organization, and me personally, have fought long and hard to see positive change for people with disability. We were so excited when NDIS was announced. Nearly 10 years later it is heartbreaking to see how it has ended up. It’s vision and principles are just words on a document now. Somehow we have narrowed people’s lives down to a dollar amount, and have forgotten the “humanness” of our citizens. The NDIS does NOT support the time it takes to form relationships with people who are vulnerable, nor does it fund time to dream and imagine a better life. I hate that our organization is turning into something it never wanted to be - clinical, dollar focused, unable to take a call unless someone has “funding”. It’s simply an awful environment now. I have worked for 30 years in this industry and have witnessed some great things - systemic changes, people living a life of their choosing, people really connecting and building life long relationships. I feel like we are back in the 80’s and people are just being regarded as a “dollar worth”.

‘The constant large changes across many aspects makes it confusing and difficult to make firm decisions. Which in turn makes everything more time consuming to do things I’ve always done’

‘I must say as a service provider who cares for many complex clients i am very disappointed with the plans i see coming through. I’ve personally dealt with too many untrained and inexperienced people through the ndia. I have more experience than most people especially when it comes to Autism. I can also say as a disgusted parent who has been lied to and funding for my children slashed after being promised ndis would honour our ADHC funding. As a provider we have lost too many good staff and are getting more and more with qualifications but no experience and little care other than money because they’re all casual. I can see the entire system failing if things aren’t changed. My service is still owed over $30, 000.00 and this has gone on for almost a year. Participants are not given the choice and control promised nor is it all about individualised care. It’s about how to save money when it should be about improving lives and families.’

‘We, as professionals, have become accustomed to to the vagaries and inconsistently of NDIA. This should not be the case. For each individual person with disability the Ndis should be just RIGHT for them’

‘While I was extremely positive about the NDIS, the longer I am involved the more pessimistic I have become. Despite my very very strong desire to support the NDIS, particularly given my passion for work with PWD, the barriers to me making things work as a small business keep mounting. Unfortunately I now face the very likely reality of deregistering from a program I strongly advocated for purely on the basis that it is unviable to run a small business in this new environment’

‘The last question points to some of our greatest challenges… the amount of unpaid administrative work to process participants for group programs, the amount of time spent advocating and supporting families with no support coordinator budget but little capacity to do it themselves, the huge issues with reviews or crisis situations where there is absolutely no where to go to get help to address the issue. These issues contribute to the struggle to meet our costs. We have no budget for training staff and team meetings are quickly becoming unviable due to the cost of staff to attend’

‘I’m exhausted by the multi-faceted challenges of working within the NDIS - the complexity of the system, total lack of communication, constant changes (that just add to complexity

and workload), the poor understanding of disability by Planners and LACs, the slow processes, the high administrative demands….. the list goes on. It feels like the whole sector is in crisis.. ‘

‘The NDIS causes providers extreme stress. It is a system that constantly shifts the goal posts, requirements, funding and registration AND expects providers to keep up with this when we are already delivering services to participants with complex needs which is challenging enough. The communication within the system is shocking. I’ve never experienced such a poor government department who promises to return emails and contact you but don’t.’

‘The NDIA IT system is outdated and ineffectual! The system is broken and it’s the participants and services paying the price! The phone system is no better! Bring the call centres back to the (local) office. Speak to one person who knows what’s going on. It’s wrong that you get 3 answers to the same question and they’re all wrong! If NDIA can’t get their act together, how can the services.’

‘As a provider it feels that the NDIA has enormous and often extreme expectations of providers (for example TPV and the NDIS commission), while they refuse to be held to even the most basic standards of paying providers for services provided and providing competent and consistent communication.’

‘Over the 5 years I have been working with the NDIA, I have seen parents’ stress levels sky rocket as, in addition to the stress of having a disabled child, they now have to deal with the uncertainty of the NDIS landscape. The NDIS is having a severely detrimental impact on the mental health of many families with whom I have worked, many of whom feel completely disempowered and feel that they have very little control over what is decided by planners. Like many other clinicians working within the NDIS sector, I have had enough, and am looking to get out of disability work, taking my 27 years of allied health experience to a more stable landscape. Working in disability is hard enough, without having the additional burden of dealing with the high levels of stress parents experience when it is time for NDIS reviews.’

‘Communicating with NDIA staff is impossible. Recent changes to service booking adjustment has made a significant change for good as its one less reason to contact NDIA.’

‘Thank you for the survey. The NDIS is listening and trying. I have been invited to a number of forums to have a say. The main impact we see is for our families and clients that have to fight so hard now; the devaluing of clinical recommendations and the huge admin burden to our system. I have to employ a new person and staff are stressed. The purchase process is poor and a battle for everyone even once the funds are available. Thanks for doing this.’

‘The biggest barrier to the independence, choice and control of my clients is the absolutely appalling plans and reviews being delivered by planners. The pathways system is NOT working and hiding planners away from participants is not only disrespectful when it their life being impacted, it is setting participants up to fail because most of the time their plans are not adequate. As a provider, the appalling rate for Support Coordination is the greatest challenge. To get this in plans participants must be incredibly complex, yet they aren’t being funded at the specialised rate they should be. I have kids aging out of EI and begging me to take them on as their SC- yet the rate drops from over $180 to just $96. The cases are no less complex yet the rate is half. Not sustainable!!’

‘I’m feeling incredibly disillusioned by the NDIS. I currently only see self managed and plan managed clients and that causes me enough stress. I have absolutely no interest in becoming NDIS registered. ‘My passion for working in disability as a Speech Pathologist has definitely waned and I’m looking to get out of the industry as soon as possible. This is very upsetting for me but it’s just all too hard’

‘I am concerned for the overall position of NDIS in terms of choice and control when providers are having no choice but to deregister or shut their doors. Very concerned that tiering is not off the table yet re providers fees. Very concerned at equipment is taking over a year to be funded. So many concerns..’

‘I have nothing whatsoever that is good to say. My clients are at risk and some have been injured while they wait for decisions to be made. Under the old system, all of their CHMs would have been completed. It’s a bloody joke!’

‘The AT application system continues to be a mystery to me. What happens once I send an application? Colleagues have suggested scattergun approach … send it everywhere in the hope it gets to the right person eventually’

‘I feel like therapists are made to be the “bad guys” all the time. The stress of that is enormous. I now feel like I’m spending so much time on policies that my headspace is not on my actual work’

‘Communicating with ndis is a nightmare . When there are payment issues it’s impossible to get help just get passed around.’

‘There is complete inconsistency in how planners are interpreting criteria for reasonable and necessary supports and the NDIA engagement team are verging on combative when faced with attempts from providers to address this or request any type of NDIA policy which the planners would use to make their decisions. Participants are deteriorating as they are transitioned to NDIS supports from FACS and then in subsequent plan reviews having all supports revoked. This NDIS has such potential to positively impact the lives of so many. But is currently an absolute disgrace and liability largely due to the incompetent and inconsistent decisions coming from planners who are totally ill equipped to hold the type of responsibility that they currently do.’

(g) the crossover between state based services and the NDIS

Some of the issues on this point have been raised earlier in the document. There are clear challenges and gaps between the NDIS and the state based systems with a ‘pass the buck’ approach seeming to be taken by both sides. This leaves people with disabilities stuck in the middle and it usually falls to a provider to try and provide some support pro bono (if it is done at all).

It also seems to take an exorbitant amount of time for decisions between the state and Commonwealth to be made regarding those supports for which funding negotiation is ongoing. While these negotiations are ongoing, in some cases it would appear that an informal decision is made and implemented by the Agency whereby Plans just start being produced without funding for the controversial item and the Participant is instructed to access that support through the state based agency, who are not aware that they are now responsible for doing so.

Providers are often the people who are referring people along to other services. We asked them to rate how much they knew about what supports their own state based services offered for people with disabilities. See the table below for details.

NDIS Provider survey July 2018 SurveyMonkey

Q28 I know the services and support offered to people with disabilities in the following non - NDIS funded state based services

Answered: 239 Skipped: 63

Providers understanding of what is in place within state based services to support people with disabilities is variable. This does not lend itself to easy cross referral or communication between agencies. There is still debate over whether NDIS or the state is responsible for providing some supports and this presents as funding within an NDIS Plan or a redirection by the Planner to a state based system. Formal announcements or documentation of a decision or policy change are rare leaving Providers in limbo as to what they might expect to be funded in a Plan and what work they might be completing pro bono either trying to link their clients to another service or just completing the support themselves.

RECOMMENDATIONS

Our aim is to support the growth of the market by supporting businesses to start - up, establish and grow. We believe that with the current challenges as stated in this report there is a significant risk of market thinning and in some cases market failure.

We recommend:

1. A review of the NDIA of their philosophy, mission and culture with a focus on TRUE choice and control, a human care factor for both Participants and Provider, communication and transparency.

2. Skills, expertise and knowledge of workers and professionals should be acknowledged and considered in decision making
3. A comprehensive, coordinated workforce strategy including training, supervision, mentoring and rural and remote incentive with an initial focus on Planners and Local Area Coordinators.
4. Financial and process support for SME’s to complete NDIS registration and audit processes
5. The SME segment of the market to be recognised as having its own strengths and challenges and as such relevant communication, support and engagement with this community from the NDIA and state based agencies is suggested. Existing support networks should be utilized for this purpose.
6. ILC funding be deployed to improve the access and information for people with disabilities and providers in connecting with the state based agencies
7. Urgent attention to the issues of responsiveness, coordination and capacity for all stakeholders within the Early Childhood and complex support areas.
8. Issues involving payments, including Plan Gaps and unsuccessful claims be addressed as a matter of urgency.

IN CLOSING

We supply the final comments, in full as written by the contributors to our survey.

‘I hate NDIS.

‘Experiences with the NDIS system are frustrating, devaluing and disheartening for providers, especially allied health providers. This significantly impacts on the well-being of our clients. I wish the NDIS would listen to the recommendations provided by therapists.’

‘As a sole trader having to learn the ropes and implement changes to comply with the requirements that continue to change the result is cumulative stress that seems to have no end in sight. More time is being taken up with administration and paperwork that does not mean a better outcome for clients.’

‘Thank you xx’

‘I will remain positive’

‘Whilst the NDIA will hopefully in the long term make a great impact on people with disabilities lives, the providers working in the industry and struggling with the changes - new regulations that have a huge cost attached as well as the time to implement, travel

funding changes which has a negative impact and is forcing providers to reduce services which in turn means clients are missing out. Lots of work still to be done on the NDIA’

‘I am feeling discriminated against by the new requirements - because I am a company I must have certification level audit, but I work by myself with no staff - the only reason I am a company was the when the early intervention for autism first came in it was required to be a company - so I a changed from sole trader to a company. I have had a rough guide for cost for the certification process and been told - $1,100 for online audit first, then $4,400 per day for site audit, plus travel costs for rural location - so minimum $7,000!!!’

‘Thanks Chantel for all you do. The ideas of the system are great, it has some great points but it is failing too many people too greatly and really needs to be fixed. It needs to be lead and designed by the end users and those that truely understand disability as well as clinical needs. And more honest genuine thought needs to be given to rural participants in particular but also those of complex social environments- yes the individual needs to be the focus but that person exists within their own social structure and system and more consideration of that and what needs to be done within that also needs to happen. No amount of disability services is necessarily going to change a situation of neglect and child protection issues if we can’t put the services in place to support the family to change; we need to see the whole picture not just the person but the person in their environment and context’

‘The state based system had its faults but this current system falls short of what was promised- I only work in adults now have no knowledge of early childhood’

‘Swallowing is a disability related need and assistive tech needs to be improved significantly. Streamlining processes could save funding by reducing hours required to complete ndia required documentation’.

‘Obtaining urgent AT and home mods has been terrible. Lots of unpaid admin time. Mixed quality of plans’

‘I am looking forward to the commission stepping in and keeping providers honest. But who keeps the NDIA in check?’

‘Just thanks for all the information you share and the energy you put into working it all out !! I am still cautiously optimistic that through strong advocacy we will work this out …. a bit worried about the many children who need ECEI who may fall through the cracks in the meantime. Thanks again’

‘I don’t believe the sector can withstand much more. Small businesses are being affected the most and get no additional support. This is only going to lead to negative impacts on choice for participants. Small businesses need to be supported to withstand this ongoing changing sector so that large businesses and organisations don’t monopolise the market place’.

‘Therapy assistant rates are too low for employment within a therapy provider service to be viable. Therapy assistants are not paid evening or sat loading whereas personal carers are. This is not fair’

‘I am very, very tired of the angst with everybody…. For the amount of money this scheme is investing in itself and the participant, I think it should take a very long look at how this ‘business’ operates….the knee jerk reaction to every issue is very unprofessional and I can only see it getting worse, with Centrelink operating the portal and Serco the call centre, with a government department behind running the ‘business’….’.

‘Working in the NDIS space has proven to be quite time consuming in terms of non billable hours taken up understanding the ever changing NDIS processes that come with lots of fan fare but short notice when something actually changes (11 days when the travel arrangements for therapists changed), mixed responses from LACs and the NDIS hotline, reviews that take extensive periods of time, no actual process of what happens with AT applications, the inability to actually speak with a planner (seriously the system where they ring multiple times but will NEVER leave a contact phone number or email address is just ridiculous and inefficient for both the planner and us…I don’t know of any other business that works in this secretive manner….its a disability system not the CIA), no ability to get urgent situations looked into (I have taken to going into the local NDIS office to advocate for clients urgent situations where they are at risk of injury…..always told someone will ring me…nobody ever does…as a therapist I then wear the families frustration. Generally this is a hard, time consuming, poorly designed process that doesn’t provide near enough the flexibility and responsiveness that a person with a complex disability and changing needs requires’.

‘The NDIS has added an even higher amount of stress to already stressed families. The system is difficult I access and navigate and there isn’t nearly enough funding for service coordination given the inefficiency of the system and the lack of therapist time and resources now to advocate for clients and their families. It will see providers shut down or down-size considerable meaning less choice and control for clients. It’s a national disgrace’.

‘I find it very difficult that small local NGO’s who knew the families well have not been able to maintain services under the NDIS’

‘NDIS systems have improved over time, but have been extremely difficult to work with. Changes are very slow. The change to allow us to edit service bookings is a huge improvement which took too long to implement. And still hasn’t been implemented throughout. PRODA is slow and tedious. The IT is bad. Planner and LAC’s need more training in disability and understanding of allied health role. This has improved but very slowly. Planning for people with progressive neurological disorders has been poor. They need to continue to listen to advocacy from Allied Neurological Alliance. It’s improving, but progress is slow and frustrating’.

‘I am completely frustrated. The lack of cooperation between systems and the NDIA - the approach to not engage means the systems are failing the people we are trying to help!’

‘We all have our l plates on. The rules are continuing to change and develop so until that settles we remain in flux’

‘Give everyone a little bit of Support Coordination, pay providers for fixing up NDIS mistakes. Listen to the people with experience, skills and qualifications on the ground to see the impacts of the NDIA on a daily basis. Pay for proper supports in plans and give people Capacity Building support, then you WILL get an insurance scheme that functions as an insurance scheme. If the NDIA keeps on as it is, people will (and are already) go backwards’.

‘I have felt utterly exasperated and consider a change in pace by leaving service provision and going into a research position at a University BUT families in our outlying communities are relying heavily on me keeping my business viable I have felt increasingly frustrated with colleagues who have created false expectations for participants by keeping long waiting lists and substandard admin/ communication with customers’

‘The NDIS is a fabulous concept, but it is insulting how the NDIA boasts about coming in $800million under budget! Why not use this money to fix the portal, hire enough staff, train them properly, adequately (and consistently) fund plans and speed up the assistive technology process?!!’

‘Ndis is continuously approached to improve its relationship with or Australia and other allied health bodies to little avail. Assistive technology is a mess. Professional expertise of it’s is not given the appropriate respect and consideration it deserves. Many hours of unpaid work is being done by it’s to help clients and it is not sustainable nor fair or equitable’

‘Ready to give up. Just too hard and feel completely undervalued. Have worked for 25 years with CTP, Housing, DVA, Health, Workcover, Lifetime Care, have NEVER come across such an incompetent bunch as the NDIS. What a mess’

‘Not getting clear communication from NDIA is a major issue. Constant changes with little communication from NDIA is a major issue. Participants are not understanding the scheme and relying on Providers to help them to understand which is time consuming. AT provision is an endless source of frustration to therapists. So much time wasted due to lack of clarity around processes. Inconsistent decisions re reasonable and necessary. Expert therapist recommendations are being ignored. The implementation of the scheme is so far away from the intent of the legislation that it’s soul destroying for participants and providers.’

‘It’s a crap system’

‘The only way forward I can think of is if NDIS funds each State and the State manages the dispersion of the resources. Give a least some say back to services, we are not all bad! Some of us have supported people to change their lives for the better. I will never understand how a “business” model works for people who are extremely vulnerable, or isolated. We have forgotten the human factor’.

‘Great survey!’

‘We need Consistency in NDIS packages without rigid formulation based on disability criteria. Everybody needs support coordination! To help people to connect with mainstream as well as disability supports. And to help people with disability really take control, take that apprenticeship in choice and control, which is been denied for people with disability for such a long time’.

‘More funding is required for those with complex needs and those who had previous ADHC funding should receive at least what they did pre ndis’

‘NDIA needs a complete overhaul’

‘WA disability sector has suffered as a result of introduction of Ndis. I work for an organization … and my colleagues and my job satisfaction has deteriorated significantly!! To the point that my VERY experienced colleagues are leaving, burnt out, stressed, feel undervalued (the list goes on). The ability to actually complete my job is diminished and many more barriers in place. There is another link the chain (Ndis) who does not always value professional opinion, hours are SO limited for prescription of complex AT and when request more it’s declined and blamed on providers. When in actual fact the Ndis planners ‘predicted’ incorrectly in the first place. No understanding of the complexity involved. My goal is to support my clients and work Through their goals for AT, however I spend time ++ chasing up on applications that drop into the Ndis black hole. No feedback on approvals received to OT and sometimes family. Do not get responses for several months chasing up applications. This is a list of just some of the frustrations. There has to have been a better way. I do believe that people are receiving better support in some cases in terms of personal care and daily supports …. so it can’t all be bad. I hope it improves for everyone’s sake. I have no idea how families cope with all the additional work involved.’

‘I am very concerned about the proposed ‘levels’ for categorizing Participants into different hourly funding amounts. If this comes into place, it will significantly impact upon the viability of my business. I am concerned about the lack of communication between the NDIA and all stakeholders. I met with a self managed participant last week who did not know that a new Price Guide had come into effect on 1/7/18. The new travel guidelines are impacting upon plans. As travel costs are in part determined based upon the location of the appointment before each participant (that they have no control over), it is very difficult for families to predetermine regular travel costs associated with their appointments.’

‘It’s a struggle to run a disability support service at the moment. Very hard. But I believe that if we can hang in there things will improve’.

‘After two years as a registered provider some of our clients are now tying to negotiate an NDIS review process that is increasing in complexity and giving their children less than what they previously received. There is no continuity with LACs which means it’s impossible to develop long term professional relationships Private practices encounter serious financial and operational disadvantage when compared with larger organisations which have personnel and structures that make it possible for staff to

focus on compliance and not have to also be the therapist delivering service There is insufficient support for NSW providers who are soon to be audited’

‘Thanks for your advocacy’

‘Overall, I rate the NDIS poorly’.

‘The system is broken. Who needs to die before it’s fixed? I’m already supporting a family whose father committed suicide due to the strain of supporting his son with severe challenging behaviours. #theforgottenvoices’

‘Ndis has helped my small business to grow, and it has done so quite quickly. I’m concerned that i might soon have to let staff go if tiered funding comes into play. By far however the biggest frustration is increased admin time and painfully slow response time from ndia. 8 weeks for an email reply to adjust service bookings is unacceptable’.

‘I’m so tired. My clients are tired, and it just seems to be getting worse. It’s not the people who have lower support needs that are missing out- it’s the ones with the support, knowledge and ability to advocate, and the ones who can’t afford the diagnostic evidence to prove their needs on paper’.

‘Sorry said that before. Good luck. Big hug.’

‘I am leaving NDIS work to return to health as I cannot continue to provide a service with the insufficient funding & support for my clients, including those in more rural remote areas. The uncertainty of NDIS around the TPV and accreditation has also helped my decision to cease providing NDIS services. As a sole provider, who is already registered with AHPRA the duplication of the processes are not financially viable for me’.

‘No, thank you.’

‘Thank you’!

‘my biggest concerns re the NDIS/NDIA are around: - the total inconsistency of the NDIS/NDIA - every time you ring them you speak to someone different and receive conflicting information. - the lack of understanding of NDIS staff as to the impact disability has on a family - the gaps between plans - we are expected to continue to provide services but with no knowledge as to when we might get paid. - the lack of response to requests for plan reviews - delayed response of the NDIA to emails/ phone calls etc - NDIA staff don’t accept recommendations fro specialized providers - the significant amount of time spent writing end of plan review reports which generally are

not read by NDIS staff anyway! - parents struggle to communicate with the NDIA which then comes back to providers to advocate on their behalf which is very time consuming and takes time away from our core business of providing quality therapy services’.

‘Gross differences in funding allocation meeting the real needs. Differences in planners’.

‘The roll out of the NDIS has had an enormous impact on all providers in the disability industry. It has seen the breakdown of staff and been the cause of multiple incidents of burn out. The industry has as a result lost many valuable people with many many years of experience’

‘Thanks for the work you are doing’

‘I have a love/hate relationship with NDIS. I love the concept of NDIS but hate the interactions that are necessary with NDIA’

‘It’s so much stress!’

‘NDIS fatigue for participants and providers is a huge problem’

‘The NDIA needs to focus less on what other departments should be doing and look internally to make sure it and all its representatives are currently doing the jobs and providing the service they are meant to’

‘Very discouraged about NDIS and the detrimental effects it has and will continue to have for both provider and participant. We can and should be doing better.’