Submission to the Senate Committee of Inquiry into the Culture and Capability of the NDIA

December 16 2022.

Thank you for the opportunity to present this submission.

I write from the pointy end of the disability world. Where words rarely happen and communication in all its forms is mysterious and complicated. Here difference from ‘the norm’ is extreme and isolation and loneliness has become a way of life. When you have no voice, you are rarely seen.

My son is he has level 3 autism and cannot speak. He lives at home. I am his sole parent-carer. We live in regional NSW.

I watched the birth of the NDIS idea announced by Gough Whitlam so long ago. I was there when this ideal came into being. Future participants were asked and trained to dream of a better life where their skills and talents would be recognised and a good life would ensue. It is a dream we must treasure and protect.

I include some suggestions which may help us do this.

Culture and Capability.

I believe there remains considerable opposition to the existence of the NDIS. It is covert and insidious. Those who secretly oppose it prefer the old charity mindset and framework because it made them feel good.

The NDIS introduction in NSW was a baby and bathwater approach. Had the successful trial run in Newcastle been adopted over the proposed time period things would have been very different for my son and I.

I see a high level of cognitive dissonance within the staffing and structure of the NDIS & NDIA. This has resulted, mainly, from the application of an insurance framework requiring quantifiable data on people and issues which are, at their essence, unquantifiable.

It has encouraged a defensive mindset within the NDIA that people are out ‘out to rip off the government’ particularly prevalent at planner level. So many of whom see themselves more as ‘protectors of the public purse’ than ’the enablers of better lives. This is increased, and validated, by a culture of cost cutting over the wellbeing of participants.

This defensive and erroneous presumption plays into the hands of those opposing the NDIS. It also puts participants and their advocates on the defensive which is enhanced by the knowledge that “faceless men and women” accountable to no one, determine their fate.

The maintenance of the LAC visible and Planner (invisible)- so like good cop bad cop- is counter-productive to developing a practical level of participant trust in the NDIS which is

Necessary for choice, voice and control we used to hear so much about.

Planning is more like a game of whispers than collaboration.

It would help in the development of participant trust if job titles described what the job was, what tasks were involved. LAC’s (ask participants, who can speak, what they do – they will say they write their plan) but what a name for such an important job. Planners perhaps would be better described as funding allocators.

Participants, especially at the pointy end, should have the right to meet directly with their planner. Not have money handed down anonymously.

The culture of the NDS does not favour the concept of lifelong learning for people at the pointy end.

There is still a strong presumption of gratitude from participants.

Disability has become big money business I am now ‘an informal support’ and my son is regarded as a ‘fungible commodity’.

From the outside looking in so much of the machinery of the NDIA seems to favour DSPs over the wellbeing of participants.

An example of this is the recent changes to short notice cancellations:

In July the NDIS extended the notice period for cancellations of service from 2 days to 7 days. This has meant that participants who cancel support due to sickness or any other cause pay for the session regardless even if the DSP reallocates that worker to another participant or administrative duties. Thus, creating an ugly system of double dipping.

Participants who are sick without giving 7 day’s notice of cancelling the service are being treated differently and detrimentally compared to any ordinary person. The DSP receives the money whether they provide the service or not. And who else in society has to give 7 day’s notice of being ill!!!

There is no way for this to be picked up in examining the DSP’s accounts.

So many DSPs actively oppose true ‘person centred practice’ one CEO described it to me as a “good way for staff to avoid doing their job”. The response generally given is that their ‘clients’ can choose what they want to do with their support worker. There is no system in place for fair and informed decision/request making especially for people who can’t speak.

‘Clients’ are not taught about true person-centred practice. Many participants, and their families, still are afraid to complain or ask questions because of repercussions in the past.

All idea of lifelong learning, skill development and social connection, for people at the pointy end of disability, previously implemented by DSP’s albeit haphazardly, ceased with the introduction of the NDIS.

The system only seems to work if you have highly effective trained workers and people who can speak and function well with basic supports but this is not the case for my son or others at the pointy end of the disability world who are left in the shadows often occupy the ‘too hard basket’.

Impacts of NDIS/NDIA

There has been a betrayal of all that training and expectation for a new world in disability we were promised before the ‘bean counters’ moved in.

As a parent

My life is very much harder and I have less time under the NDIS than under previous block & charitable funding. My son’s plan is plan managed.

As a participant

My son’s life has involved more time at home with me than with his friends or paid support workers.

I find I am now doing the tasks which previously were done by my son’s service provider. I have to train support workers in the most basic skills; I make materials and create activities for him to do with his 1:1 support worker; I supply coffee, tea etc & occasional meals and facilities for his support workers; I do not begrudge the tea coffee etc but our home, our sanctuary, has become a workplace for strangers and this is really difficult;

As well, I need to check invoices from service providers as these are so often wrong (in their favour) as to make it ridiculous.

Then every year I am required to prove my son’s lifelong, permanent, developmental disability and his consequent needs to the LAC (we’ve had 7 so far). This is a stranger who might have met once and who in turn has to prove his needs to ‘the Planner’ (a faceless stranger and again different every time). This means not just the work involved but also reliving his diagnoses and the grief and trauma of the intervening years.

In 2017 my son was transferred to the NDIS automatically. He had been a client of the then ADHC since he was 3. The next year his funding was slashed by a planner a complete stranger who without reference to us or the LAC argued there was no proof that he was disabled at all. This meant an appeal (written by me), getting him re-diagnosed (yes level 3 autism no change) and harrowing months of worry, heartache and stress for my family while complete strangers who had never met determined his future. His funding has never returned to the initial amount.

In other plans ‘about me’ statement was changed and parts deleted for example his 12-week viral illness (and consequent no service) and my simultaneous diagnosis of a chronic illness were changed to the phrase “Mum and I have been a bit sick this year”. This could have been done by the planner or the LAC I have no idea which, but it suited the NDIS cost cutting philosophy.

His current plan came back full of typos and repetitions a far from professional document and little or nothing to indicate that ‘the planner’ had even read his statement of my carer impact statement.

I distinguish two types of support workers those employed by service providers (DSP’s) and those who are independent.

The proliferation of “independent support workers” is of great concern.

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There is no oversighting body to which a family can turn who are unhappy with an independent worker. If I hire a plumber, I can check their bona fides with their professional licensing organisation. To achieve their license, they must prove a certain level of proficiency assessed independently. In the area of independent support workers my son has less protection than a water pipe. At the pointy end of disability, where vulnerable participants are unable to ‘tell on’ support workers this is a serious issue.

DSP’s now do minimal in-house training of their support workers, even traditional buddy shifts for new workers are rare. They are trained to complete in house forms and use the right words to ensure the DSP’s position but not in the intricacies of how to do their job. Participants pay for the time 10 – 15 minutes of a shift to write these notes but they or their parent carers have the devil’s own job to receive a copy.

There is a knowledge and therefore, power imbalance between employed support workers and the participant and their families. They come into our home, observe lifestyle, our habits and photos etc in an Autism household they learn the important rituals etc and we often don’t even know their full name which they are reluctant to give even when asked. One told me this was an instruction from their DSP employer.

They share little or nothing of themselves with us yet we are expected to leave our non-verbal, vulnerable person with them. There is an expectation of trust but a complete lack of foundation for it.

Many people entering disability support work have a first language which is not English making training in good support work and effective supervision even more essential.

There is no training in the special needs of people who are Autistic despite the high number in the participant population.

The ethics of 1:1 support:

For a relatively new concept disturbingly little has been put in place by the NDIS to ensure its ethical practice.

DSP’s profit massively from 1:1 support as opposed to group support. As well, they have less to do as an employer. There is no supervision or specific training on how to ethically support someone in the community – how to be a bridge between them and people, waitstaff etc.

So many sit in café’s support worker on phone, participant disengaged, staring into space. So many walk a metre or more behind or in front of the person they are being paid to accompany? Just being there is not enough!

There is generally an absence of reflective practice amongst support workers. This combined with minimal job training, low employer expectations and an absence of real time supervision normalises poor quality support.

Suggestions

Planners should no longer be anonymous and at arm’s length but have an active and familiar relationship with the participant, especially for people at the severe (pointy) end of the disability world.

That it be compulsory for participants or their primary carer to receive copies in good time of invoices for service.
That invoices be arranged in date of service order – not line-item number order.
That the language and descriptors within the NDIS & NDIA need to be literal and clear as to their role. No more weasel words.
That there be a body established within the NDIA to register, licence and monitor independent support workers. That a minimum demonstrable standard of training be made compulsory, police checks etc and receive and record any complaints.
That a demonstrable standard of person-centred practice be established which include the specific training of workers and families in this area. e.g.: all workers and participants have a current one-page profile.
That DSP’s not choose their own auditors and not simply select the ‘happy customers’ to be interviewed by them.
Participants/parent carers should receive a copy of their draft plan with the opportunity to make changes, corrections or additions prior to its despatch to the planner for deliberation.

I am a committed and loving parent in the pointy end of the disability world. The NDIS needs to acknowledge this and remove forever the dismissive, inaccurate and demeaning epithet of ‘informal support’ -

                      see me hear me.