Challenges faced by Tasmanian disability services provider under the NDIS

Tasmanian Association of People with Disabilities And Their Advocates Inc 15 Mill Lane, Glenorchy 7010 Telephone: (03) 6273 0916 Facsimile: (03) 6273 5156 ABN: 39 086 071 162

4th October 2017

Hon Kevin Andrews MP Chair Joint Standing Committee on the National Disability Insurance Scheme ndis.sen@aph.gov.au

Dear Committee Members

We appreciate the opportunity to provide information regarding the implementation, performance and adapting to the NDIS in Tasmania to the Joint Standing Committee on the National Disability Insurance Scheme. We are a Registered NDIS Provider and offer an assortment of commentary based on our experiences and observations with the NDIS to date.

The Provider’s Background

We are a registered charity organisation that has operated in Tasmania for 30 years. Our Founder Joy Cairns OAM created this and many other highly regarded Tasmanian organisations when faced with no services for her own two children born with severe disabilities, and has been a pioneer within the disability field for nearly 50 years. Our services are grass roots, family orientated, and community based.

We have struggled from nothing utilising adhoc facilities and a wealth of volunteer support to become an organisation now with four facilities, 50 full time day support clients, 300 irregular clients, 22 FTEs, and continue to utilise volunteer support. We are highly valued in the community, however in the scheme of things considered a smaller organisation. We have no hierarchy, and rely on only a couple of key staff who work long hours undertaking the administrative burden to operate services. We concentrate resources into direct client care.

Our seven day service provides individualised Specialist Day Support, formalised individually focused vocational training in hospitality, basic education, learning and lifeskills, social and leisure opportunities, and essential respite for families and carers. We are successful, meet all required standards of service provision, are professional and highly regarded.

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As a Provider …..

The majority of our clients are in the older age bracket, and will transition 2018-2019.

Constant changes over the past three years have been difficult - information changes, system changes, NDIS staff changes, Planner role changes, removal of face to face Planning, reintroduction of face to face Planning, Plan timeframe changes without notice, administrative requirement changes, claiming changes …. even from Day 1 the name of the scheme was changed (from DisabilityCare to NDIS) …… the creation of the new Portal was worse than the Census debacle - with three week’s notice, the claiming system we were all still grappling with (but seemed to work) was simply switched off, and in its place an incomplete, untested, inefficient, error-ridden nightmare arrived that was unusable and remained unusable even six months later …..

We received a bombardment of ever flowing emails from NDIS patting themselves on the back about all the wonderful things they’ve been doing, impressive numbers and pretty graphs about Participants, plans, monetary values, percentages, yet on the coalface Provider staff were in tears after hours of frustration because the claims to get urgent money into our bank accounts just wouldn’t work…. and there appeared no one who could assist.

Under our present State Service Agreement with DHHS, we receive set Unit Priced funding per client of X amount of money, in the bank account, every quarter, in advance. This funding, and continuation of our services based on being able to budget according to this funding, provides security.

Under NDIS however, we have a backward approach… we need to provide the service first, and then claim. As Participants transition, there will come a time when the monies provided by DHHS for the future will cease and there will be increased urgency and pressure to claim those NDIS dollars that will become owing from the past ….

Additionally we are unable to claim if a Participant is absent - and I am referring to a regular, set attendance day client who would otherwise be present. It becomes a bleak outlook when, for example recently without notice we had 9 Participants from one facility attend a Conference with another organisation. With 30 people expected at that facility that day and 9 people absent, we lost 30 per cent of our income - our staff were still present, our lights were still on, our vehicles still needed fuel to transport, yet we were 30 per cent income down that day. Similarly, flu season also sees unpredictable attendance rates.

We have endured years of struggle to establish what we have today, and are proud of our self help philosophy and outstanding successes. However with ever increasing costs and faced with a forced reduction of income, we are concerned. We will not know from day to day what income to expect, and so have an inability to forecast budgets. We have absolutely no capacity to stockpile volumes of money in case people don’t turn up - and an organisation such as ours that provides for so many government clients in need should not be expected to be disadvantaged after so many years of effort - we fundraise hard for our additional staffing and direct client care costs, and should not be expected to siphon operating costs from these hard earned savings that are allocated for other priorities.

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There appears absolutely no consideration for the continuing survival of Providers, instead we receive rhetoric about “you’ll have to change your model”, or “you need to do more marketing”, or “other businesses have to compete”! …. No we should not, and our contributions and concerns about survival should be acknowledged and supported, not thwarted or brushed away. We should not be expected to consign our effective, carefully managed yet limited resources to competition based business dealings at the risk of losing our excellent people focused reputation and community-minded spirit.

There is also no provision for capital costs, such as a replacement bus, facility or equipment maintenance. We are told we must “build those costs into your quoted costings” – yet, we have no flexibility to do this as what we claim is strictly governed by NDIS predetermined/prescribed/set-in- concrete catalogue prices.

We are seeing great changes within the disability sector in Tasmania, with many organisations merging to share resources and becoming huge entities. Whilst this may be cost effective from a business perspective, “whispers” from the grass roots level are not so happy as the hierarchies become out of touch with the hands-on staff and their clients. The NDIS is also providing the means for hierarchical staff to pursue their personal career pathways.

The NDIS environment is creating a culture away from people focus and client care, to one of money generating, big business and marketing, where competition to secure dollars is paramount, and people with disabilities are being viewed as commodities. We are seeing Providers vying/competing for people (money!), and poaching from other services – we unfortunately can’t even afford basic advertising. New clients create new growth, but we are financially, mentally and physically unable to compete with the conglomerates now within the disability “market”.

Our organisation will continue to ensure our small grass roots focus be acknowledged for its quality and unique contributions, and it is hoped NDIS will not place us in the position of being forced to merge and become a larger, out of touch conglomerate - we do not want to lose our unique identity.

Under our Service Agreement with DHHS, there are certain administrative and reporting obligations – KPIs, compliance, Improvement Plans, financial accountability etc. This is of course expected.

With NDIS, we are starting to see additional administrative requirements, not just with Participant work, but compliance reporting and accountability – and we are told there will be Audits. This work will inevitably increase.

And in addition, those present clients who are 65 years and over will now come under yet another agency – Department of Health and Ageing – and we are now required to deal with a third agency that also requires numerous reporting obligations, quarterly reports, compliance etc etc etc.

From one to now three agencies, these accountability/reporting/compliance obligations have tripled this workload.

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There has been no regard whatsoever, no consultation, no empathy, certainly no dollars towards these additional administrative demands – and unlike the conglomerates, we do not have a team of accountants or “our admin people” upon which to allocate these tasks, nor fundraising/ promotional machines to pay for them.

Administering Participants …..

When it comes to the Participant work, we certainly did not expect that within our already overly long hours, the NDIS would bring such additional workloads of the magnitude that it has. The whole system is longwinded, time consuming and seems to go around in circles ….

Here is a snapshot of our experiences:

• Upon advice from DHHS regarding transition of a client to NDIS, we provide a document detailing individualized information to the Participant for their Plan discussions
• There are many hours of ongoing liaison needed between Participant, Parent/Carer, or Coordinator of Supports
• The Plan, the Service Booking and Claiming –
  • Once approved, we are unable to see the Participant’s Plan, unless they offer us a copy
  • often the supports the Participant agreed and discussed with the Planner – and expected - are not actually in the Plan (if the Participant requires a review, this will take minimum 8 weeks … )
  • The new Portal does not provide an ability to view what supports a Participant actually has been approved
  • If we do see the plan, information is limited, and amounts and supports stated are ambiguous - Plans could at least detail individual Providers and the respective budget allocated to that Provider, but instead we are left to grapple with a mysterious amount of money under, for example “Core Supports” and wonder which portion is ours to use….
  • We must manually calculate every hour, of every day, for every individual activity of intended support for the coming Plan period (four months, twelve months, sometimes 18 months, recently told 2 years - there seems is no consistency) – and we must include a guess of upcoming CPI increases at 1st July to add, plus deduct public holidays or foreseeable absences – another time consuming task (open to honest human error)
  • We need to create and provide a Service Level Agreement to the Participant detailing these calculations and the supports we will be claiming for the duration of the Plan
  • As there is nothing in the Plan that details the Planner’s intent or any specific information for claiming, we are left to guess the amount available and hope it is sufficient based on our calculations
  • We also don’t know the level of support (i.e. 1:1, 1:2, group rate) that has been provided within the Plan for claiming – the Participant has requested/discussed/ agreed/expected a certain level of support, yet often the Plan/budget does not reflect this

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• We then guess the item number of support we should claim under and usually base this on other clients receiving the same service

• If we inquire with NDIS what support item to claim for a Participant’s specific activity, we are advised to “go back to the Participant and get them to ask the Planner” (if the Planner can be contacted!)

• Once the Service Level Agreement is signed (add to the mix at this point occasional entrance of an Advocate) we then create a Service Booking within the Portal for the quotation as agreed

• The sudden introduction of Service Bookings brought about a whole new set of issues….

  • we do not know what amounts other Providers have been allocated from within the mysterious amount of money under, for example “Core Supports”
  • there is an urgency to “get in quick” with your Service Booking, to alleviate another Provider (there are sometimes several Providers who share this same mysterious amount of money) booking the whole budget for themselves, leaving you with nothing because they have miscalculated their support requirements (or not calculated at all) which happens often - it’s imperative at this point we guarantee our entitled share quickly to alleviate a potential time consuming, enduring administrative nightmare …. (between us, the Participant, their Nominee, Coordinator of Supports, possible Advocate, NDIS, “the finance people”, other Providers …. round and round) … and again wait weeks for the issue to be resolved …
  • When a Service Booking is rejected due to insufficient funds, it’s usually because another Provider has booked too much of the mysterious amount of money for themselves - we dread the message that our booking “exceeds allocated budget” (refer back the Participant, their Nominee, Coordinator of Supports, possible Advocate, NDIS, “the finance people”…. round and round again) – more weeks to resolve budgeting/ Service Booking issues
  • There is an inability to amend service bookings – even for simple human error, it must be requested through NDIS officers
  • There is ongoing back and forth emails and phone calls whilst we wait to make a claim
  • Meanwhile the person is still attending and receiving services – yet we cannot claim the funds to support them until the Service Booking issue is resolved - but that’s okay, because thankfully we can just siphon the staff salaries needed from our pot of gold under the rainbow
  • The claims process is very testy – the bulk upload document is extremely sensitive, and even a spacebar inadvertently bumped into the wrong place can reject the file. After preparing your document and uploading it, it’s like winning Tattslotto when the message appears that your file has been accepted ….
  • But don’t get too excited! We then allow 24 hours to see if any Participant’s claim has been rejected - this is usually due to a change of Plan dates that can occur overnight causing the Service Booking to become inactive (we are last to know if there are Plan date changes). If this has happened, we must start the whole process for that Participant all over again ….. (re-calculate for another Plan period, new Agreements, new bookings, more tooing and frooing, more weeks down the track, and no funds to support the Participant)

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The constant back and forth takes hours and hours on just one Participant’s issue – and unless you are fortunate to have a “contact” person you can email (and they haven’t resigned or been re- allocated somewhere else) you are on hold to NDIS for over an hour on the phone ….. which usually disconnects – in which case you need to phone again and wait another hour (but that’s okay, I’m not busy).

The administration of NDIS requirements by Providers alone is a full time position yet there is no money – nor acknowledgement - that we have been put into the position of working until midnight, or needing to engage additional NDIS specific administrative staffers (to the detriment of direct individual disability care). Keeping up with the constant changes, the constant individual problems, the consistent need for multiple liaison, the Plan errors and reviews, and ongoing claiming issues are so time consuming. Queries are shuffled around, or we receive no responses at all – NDIS staff are spread way too thinly.

Importantly – what happens in a crisis particularly in emergency situations? If it’s not in the Plan, not in the quotation, not in the Service Level Agreement, not in the Service Booking it cannot be claimed! What happens when a Participant has need for additional days of support in the event, for example, parents/carers are hospitalized? Do we ignore that person’s plight?

There is no flexibility at all – once in the Plan, once booked, that’s it (or undertake a review that will take months!) – there is no provision for unexpected life occurrences, yet people with disabilities live with these daily!

Observations from the perspective of a Participant …

The majority of our clients are in the older age bracket, with predominantly severe intellectual and multiple disabilities. They are on Disability Support Pensions, and their circumstances in life dictate a classification within lower socio-economic terms. They are living with aged parents and carers, good honest people who have worked hard all their lives to provide for their adult child, and don’t want to be a bother to anyone. They are happy for the wheels to turn away in the background, not be thrust to the forefront for them to deal with bureaucracy. They have had a lifetime of embarrassingly sensitive talks (often raising post traumatic stress disorder), questions and medical prods about their disabled adult child.

They are fearful of the NDIS, what it means, the confusion, the hassle, something they just do not understand. We are talking humble people who don’t have mobile phones, internet access or computers at home, yet are suddenly being told they need a MyGov account to log on to the Portal!

The Participants are being asked what their goals and choices are – for most of our clients their biggest goal is to get their lunch on time, and as for choices, many have an inability to choose whether they want ham or chicken in their sandwich, let alone make decisions about their life. They are unable to read and write, can’t tie a shoelace – how do they make decisions about the future?? What is support? How do they know what is available, what to ask for, what they are entitled to, what they need? Our Participants have severe cognitive disability as well as intellectual impairment, and are therefore unable to speak for themselves, relying on their aged parents/ carers. Other Participants live within residential services, where people who have little knowledge of that person are making decisions on their behalf.

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A snapshot of our observations:

• Participant and parent/carer meets with Planner (now LAC) to discuss supports
• There are issues with reliance on parents/carers in the planning stages to correctly explain what supports a Participant requires, and to ensure these are correctly reflected in the budget - Provider: “To assist John undertake formalised Certificate 1 Hospitality Training and participate in supported onsite workplace training at a public venue.” Versus how mum sees it: “Johnny does a bit of cooking” ……
• A Plan is formulated for approval, however, there is no review process prior to approval – we are constantly being told what is discussed at the planning stage is not what becomes approved in the Plan, and where a Participant has expected certain supports this is not the case. The Plan cannot be changed, it must be reviewed – and this can take months!
• The parents/carers are usually themselves on aged pensions or limited incomes. When they receive their adult child’s first Plan, they are overwhelmed by the monetary values throughout – thousands and thousands of dollars they cannot comprehend. It is overwhelming for many who feel it a “gross waste” and perceive themselves a burden on society, as they do not have a true appreciation or understanding for the costs
• If a Provider has an issue with an inability to claim, it needs to be referred back to the Participant – but issues are taking weeks and weeks to sort / follow up / review / resolve. One parent has endured five plans in three years – she is completely over it. Every living day for her is another NDIS issue.
• Parents/carers are telling us they have had enough - one is threatening to pull her adult child out of the scheme so they don’t have to deal with the further stress of it
• Paperwork is often lost - “I sent it back weeks ago, but they say they can’t find it”.
• Providers are unable to talk directly to NDIS even though we can better explain a respective issue – we need to always refer back to the Participant or their parent/ carers, so they can themselves contact NDIS to “go back to the Planner” - we dread having to make that call and receive the barrage of abuse and woefulness, “Dear god, not another NDIS issue!”
• Parents/carers try to get through on the phone, waiting times are horrendous, you are picked up on the mainland, transferred back to Hobart, “Someone will call you back” – no further response… wait a week… try again ….
• NDIS officers have stated to Parents/Carers, “You are better to front up to the office”.
• Planners disappear – last November, a parent had Plan discussions and completed relevant Nominee paperwork. With the Plan commencing in February, this was followed by an eight month merry-go-round of contacts about ongoing issues within that Plan (NDIS, emails, phone calls, “the finance people” - the Provider thankfully continuing to provide unclaimed services for that Participant whilst no one makes a decision (thank goodness for that pot of gold under the rainbow). The parent was recently told (yes eight months later) that nothing further could be discussed because NDIS had lost the parent’s Nominee paperwork !! Additionally, NDIS could not refer the Plan issues back to the Planner, because NDIS had an inability to identify who the original Planner was … This parent was forced to cart herself into the NDIS city office to resubmit another Nominee form (front up to the office, they say) – she was so pleased to arrive at 4.40 p.m., only to be faced with a locked door because NDIS close at 4.30 p.m. !?????? She was forced to travel back another day. Still nothing resolved, this saga continues ……

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• Parents and carers do not want the hassle and angst of having to deal with us, with NDIS, waiting on the phone, waiting for call backs, waiting for reviews, liaising with this one and that one …. the stresses become very magnified
• No one will make a decision, issues are referred around and around and are dragged out
• In effect, Participants / Nominees are now entering into a government contract based arrangement
• Providers are becoming desensitized, and more focused on their business enterprises fitting in with NDIS bureaucracy

We see so many NDIS propaganda filled media articles, all touchy feely good news stories, most of which is focused on those who’ve never had supports before – particularly regarding childhood therapies, a new wheelchair for someone, a Participant being taken out for coffee outings…. But for those who are unable to speak for themselves, and who already have limited or inadequate supports, who have ageing parents and carers who really cannot comprehend why they are having this imposed upon their lives, the intensity of NDIS is causing mental fatigue and worry.

Meanwhile, society is totally unaware that the NDIS is fracturing the foundations and essence of what many have worked, struggled and fought so hard to achieve over many years – people who have dedicated their lives for the betterment of those disadvantaged by disability.

Particularly in Tasmania we can boast a fantastic disability care sector that works together with its government and each other to provide excellent services – we’ve all come such a long way. But NDIS is turning this environment and focus of care into money driven big business.

The NDIS may well have been a great idea but it is ill prepared, and that the previous NDIS CEO stated, “We’re building the plane as we fly along” is grossly unfair on the Providers burdened with trying to administer the demands of something that was clearly not ready or thought through.

The Providers seem to be the last priority on the NDIS list – yes it is all about the Participant, but it should not be forgotten that if the value of what the Providers are doing is lost, then the culture of disability service provision will change, and not for the best.

Frankly, it’s a bit of a mess, and Providers especially should not be treated with a “one size fits all” approach when we are dealing with supporting an individual’s life circumstances.

Acknowledge, support and cherish us!

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