Capability and Culture within the

National Disability Insurance Agency

Lived experience managing 16 y.o. daughter with severe disability
Highly relevant industry experience working from ‘ground level’ supports, through to

upper management in a large not for profit disability support service.
Multi-faceted and solution based recommendations

Note: I would like to take the opportunity to highlight that the information that I

am going to share is my intellectual property and before it is disseminated publicly I will

require you to seek my permission to do so, as some of the content is of a sensitive

nature. We are and would not like to be penalised by service

providers for speaking up.

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My name is and I have a deep, vested interest in seeing drastic and calculated

culture change in the disability sector.

I have a nearly 17 yr old daughter with severe, multi faceted disabilities. She is non verbal, she

can not eat or drink or express herself. She has a severe intellectual disability and an unsettling

level of vulnerability. She has poorly controlled epilepsy, is on multiple medications, and suffers

regular admissions to hospital for aspiration pneumonia which are sadly life threatening on

occasion. She has a 24hr feeding pump regime requiring a sterile set up and has significant

dysphagia (swallowing abnormality) and can not be left alone as she requires 24hr care. Every

facet of my family’s life has been impacted by her disability as well as carrying the multiple

compounding issues carers of people with disability face on an everyday basis. It has been a

challenge to say the least, but a challenge that my immediate family has managed very well.

I am also a nurse by trade. I have always tried to be a valuable member of the community within

the Community Aged Care and Disability sector in multiple roles such as; Endorsed Enrolled

Nurse, Community Support worker, Aged care case management, Quality Assurance and

Internal Auditing, NDIS coordination of supports, Community Aged Care Nursing and Rostering

for Support Workers under the old and new SCHADS award. I have held for some time, and

very recently resigned from a senior role as Disability Program Manager for a substantial NOT

for profit agency. In this position I was responsible for the training and support of NDIS

Coordinators’ of Supports, and oversaw rostering, admin and office staff. I managed the integrity

and culture of the internal NDIS program, which was obviously very challenging and at times

nothing short of disheartening. I also provided oversight for the NDIS plan management team,

working alongside the finance team within this agency. I looked after the direct service provision

in the homes of NDIS participants. During this time I took many, many complaints from

participants, which I found was actually a very valuable opportunity. I also supported the

in-home/care support staff on the field, by listening and empathising with what they struggled

with.

I am also entirely focused on creating a movement that will dismantle the current culture within

the disability sector in Australia and positively rebuild a healthier, more equitable culture,

hopefully having a positive impact on the future for people with disabilities in Australia. This is

my primary focus.

Capability and Culture Within The Ndia

I have lived and breathed this industry both personally and professionally. My perspective is skilled, current, valuable and I think I’ve earned the right to be heard. I am both the sector professional and the customer and would like to be chosen to speak to the Joint Committee.

Capability And Culture Within The NDIA

I have had first hand experience working for a large NOT for profit agency for disability and aged care, that itself has been in business for 18 yrs. The agency transitioned over to the NDIS from the older ‘block style’ funding as the NDIS packages rolled out, and had a lot of ‘experienced’ staff. What I experienced was an outdated/out of touch, obnoxious culture. As I ventured into other agencies in the area for purposes of networking and trying to work collaboratively I noticed that the attitude/culture was the same. It was overwhelming at first but as I built some resilience I attempted to challenge the culture at every opportunity. I made an impact indeed amongst the people I worked with, but soon noticed that the disability community is essentially very misunderstood, and consequently treated poorly as a result. My experience is that when the culture is challenged, the staff posing the challenge are moved on, termed difficult, or bullied into quietness. It was clear that not only the system but those working in it needed an overhaul.

But essentially I believe in the NDIA itself, I have genuine faith in it. Albeit I get worried at times from the stories I hear, and the way the NDIA is slandered relentlessly. I would like to speak to the joint committee, share my experience and share my passion to promote positive culture change. Below I will highlight a few of the issues that I feel should be brought to your attention as well as a few solutions

a. The capability and culture of the National Disability Insurance Agency (NDIA), with reference to operational processes and procedures, and nature of staff employment

To combat the systemic culture issues within the disability sector the NDIS needs to run an Australia wide campaign. This would allow persons with a disability to share experiences of what it is to live with disability and educate/inform the public on the different kinds of disabilities that exist. Bridge the Gaps for persons with a disability and

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the rest of the public. The end goal being to show how the NDIA is collaboratively

working with persons with disabilities, and promote the employment of persons with

valuable lived experience within the NDIA decision making body itself. Whatever has

done to this date obviously hasn’t worked, and in order to “turn the tide”, there is a

need to rebuild the culture within Australia itself.

Someone like myself would be a great asset to the NDIA. I’m passionate, and I would

like to try to launch a public speaking career. Bridging the gap may look like using strong

members of the disability community such as myself to engage with, and rebuild trust

with the rest of the disability community. Run a hands on, face to face campaign that

ventures into workplaces, schools and universities Australia wide. Utilise media, run ads, morning chat shows, podcasts etc., and use powerful, passionate, lived voices to share

the message of the culture change that the NDIA is trying to promote. The NDIA should

drive the culture change themselves. I have witnessed the depth of the distress

circulating in the community, having listened to revealing and disturbing statements such

as “I’m like a mushroom - fed s**t and kept in the dark”.

This needs to be addressed at the core by the NDIA, as being on the ‘front foot’ is better

than backpedalling when the disability community becomes so restless amongst the

passive acceptance of poor culture that a mass movement on social media erupts. Such

a movement would expose the lack of skills, the risks that the NDIA puts participants at, and the dismissive entrenched culture. There will be no shortage of people affected by

this rife culture that the disability community will offer their experiences as well and gain

voice.

Social media will elicit social awareness, so it is imperative and in the best interest of the

NDIA that they are ahead of the pack and create a positive empowering campaign to

flood Australia and rebuild trust.

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I can see significant value in reintroducing a very public 'watchdog' body, and a 'whistle
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blowing’ service (for want of a better term). The introduction of such services are a very

important step in rebuilding trust within the community and providing boundaries to the

support services in place. The watchdog body needs to be strong, independent, and

Driven to support culture change. The staff need to have multi faceted experience and perspective within the industry, with a lived experience being essential.

I have seen a broad decline in a participant’s ability to be able to raise a complaint and to access skilled advocacy. The most alarming component is the inability to complain, the difficulties in making meaningful complaints and the slow obstructive system currently in place. How can you expect a vulnerable participant to trust the NDIA if they are not able to meaningfully make a complaint and have it dealt with? Then how do you expect the ‘providers‘ to feel trust in the NDIA if they too cannot make a complaint.

I think we need to see an Australia wide, standardised, NDIA funded and supported training program which is preferably both free and mandatory to all Providers, registered or unregistered. The NDIA needs to be the authority on training and support - not leaving it in the hands of the Providers. National standardised training modules are needed to empower both participants and ground level workers, such as Support Workers - who have an extremely tough job generally speaking. They are the face of the NDIS service delivery, registered or unregistered. Give them skills and hands on training and set a national standard of care.

Unfortunately the NDIA is appearing more and more as an entity that its own participants need to protect themselves from. That lack of trust has escalated to alienation between participants and the NDIA. The NDIA does not appear to be a soft landing for some of Australia’s most vulnerable persons with a disability. It is sadly beginning to resemble something that its very own participants not only lack trust in, but they fear for their long term safety from. Amongst its most vulnerable participants, like my daughter for example, there is a huge element of uncertainty for the future, fear that funding will be cut and lives will be impacted negatively.

There is also fear that the participants such as my daughter, who requires 24hr care, will continue to be subject to a substandard level of care for the unforeseen future. These people’s lives depend on this system and they feel nervous and unsupported.

The NDIA needs to build better plans consistently. Specifically the most vulnerable and persons most affected by disability need quality, skilled planning and minimum allocation funding.

Split system for the different tiers and intensity of requirements. The most vulnerable

need a planning stream just for themselves. They are very much at risk and shouldn’t be

serviced by the same channels as the less acute. It’s not about a priority listing, rather

building a separate stream that they funnel through based on the documented severity

and vulnerability hallmarks such as: significant Intellectual disabilities, non verbal,

dysphagia/dysphasia, nutritionally tube fed, life threatening conditions such as epilepsy,

and all manner of severely physically disabling conditions (just to name a few). The list of

vulnerability hallmarks are extensive as are the risks associated with such conditions.

Safety measures such as streaming of participants into categories where staff have

specific training need to be in place. This would also enable Support Workers to become

experts in a field, and follow learning/career pathways to provide expert care to their

participants.

The NDIA MUST provide boundaries and strict guidelines on participant spending. This

is of particular relevance to reducing participants’ stressors. The end goal being that

participants are not agitated or disheartened when they can’t access the things they feel

they are entitled to. A lot of the discontent that I have seen recently has stemmed from

the inability to access what the participant sees as ‘fair and reasonable’. This is because

the boundaries are nebulous and open to misinterpretation. Transparent spending

boundaries will reduce discontent between providers and participants long term.

Furthermore this will reduce unnecessary spending and allow funding distribution to

those who are most in need, rather than the ‘squeaky wheel getting the oil’.

Safety measures for the most vulnerable participants as above re: high risk registers in

place that demand greater level of clearance for providers registered or unregistered to

work with these participants. Not prohibitive, but protective.

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The disability community itself can be closed and secretive at times, unable/unwilling to share

insights to their lives and needs, often tired of sharing their story after years of having to repeat

it to anyone involved in their care. The disability community has been forced into working with

staff from the sector that don’t understand them, these staff often having limited or no hands on

experience. The customer base has been given little opportunity to create something that works

for themselves and have been dictated to by various corners of the market, such as agencies.

The customer base by and large have had to put up with unskilled, substandard care for too

long and as a group are starting to “bubble away”, looking for an expressive outlet. People with

disabilities can get isolated, lonely, live in chronic pain, exist in a chronic endless spiral of

poverty; yet they have immense pride, and want to be treated with dignity. Some persons with

disabilities have very high needs yet very poor infrastructure, suffering life long hardships as a

result. Some persons significantly impacted by disability, like my daughter, have gone without

basic needs, have sacrificed essentials like working wheelchairs, have been forced to accept

mediocre, inadequate care and then have been told that we are “lucky to get some help”. One

might refer to this as unethical treatment of vulnerable persons that has been widely accepted

by the very sector designed to support them. The disability community are generally a group of

people who have had to either accept living in poverty or have had to work exceptionally hard to

get anywhere. People like myself and my husband have worked full time for many years, under

the hardest of circumstances and very difficult personal stressors. We have juggled a child with

serious health conditions with no family support, poor infrastructure, average income, and we

have other children that we have desperately tried to give a good quality of life as well. We have

been forced to work fulltime, yet have been forced to use our sick days and annual leave as it

has accrued to take our daughter to specialist and doctor’s appointments, vital therapy, or use

this time to look after her in hospital or home when she is sick. We subsequently haven’t had a

holiday together for many many years. We have had to work harder to prove ourselves in

workplaces as there is a lot of misconception about people with disabilities and the impact on

their family. We are by and large misunderstood by employers, and unfairly have no more sick

days or carer days then the average person despite the level and acuity of disability in our

home.

Capability of care

Within the local Registered Provider/Agencies in our region staffing levels consistently fluctuate and we see an inability to provide staff to cover a lot of shifts. Furthermore to staff shortages, staff employed are not always suitable for the roles and are obviously not skilled or educated. We also get told that some services cannot be delivered due to my daughter’s level of disability being too high. As a family we have seen that our daughter has been unnecessarily exposed to an extremely high volume of staff. As we engaged multiple Registered Service Providers in the region over the past 4-5 years, we have been consistently told that our daughters needs are too high, staff don’t have the necessary skills, that we cannot expect regular staff, we must accept rapidly changing rosters and uncertainty in which staff can and will attend. We have seen our daughter exposed to upwards of 10-15 different support workers in one week, sometimes three different staff in a day. This has been difficult for my daughter and very impactful on the lives of our two other teenagers in our home. It is not fair to be expected to have so many people in my home. Whilst the service providers have tried very diligently to maintain ‘regular’ staff we personally have witnessed many years of a ‘revolving door’ of new staff being rostered to us which in turn required us to ‘train’ each new staff member. Training into my daughter’s service falls on me and is exhaustive, requiring staff to be given weeks at a time training and support so they can learn the skills they need to perform her service safely. Meaning I have constantly been drawn away from my job to ‘train’ new staff. I am exhausted from this wasteful process. The Registered Providers seem to try hard but it has been, and remains a taxing and hopeless situation.

Most importantly staff need time to train into my daughter’s service as most do not have the skills to navigate her feeding device, or have enough knowledge to manage her feeding without our very strict oversight. Improper use of her feeding device which can result in bowel perforation, infection, pain, vomiting and many other preventable illnesses. Staff also need to learn her augmented communication method, understand her severe dysphagia risk, and severe epilepsy as well as the escalation plans and management of risks. They need to get upskilled enough to provide safe care and that takes time.

The risks posed to her safety have been endless. My daughter has been in very risky situations regularly as new staff were sent to us at the last minute and we were not given any opportunity to train into the service properly. This happened regularly placing her directly at risk and we

9 have been forced by the NDIS to accept this risk. Untrained or less familiar staff cannot

communicate with her, they don’t know how to operate her feeding equipment, they don’t know

anything about her particular seizure disorder or her severe dysphagia/ aspiration risk or her

augmented communication needs/devices. I have constantly been called home from work. None

of the skills that are required to keep her safe can be read from a single document or can be

taught in a brief training session. I could speak at length regarding the many incidents that have

directly impacted her negatively and without doubt placed her at risk. She is not alone and many

persons with significant disabilities are being put in harm’s way unnecessarily everyday. I have

recently appealed to the NDIS under exceptional circumstances to provide paid support to my

daughter when we are in times of skill scarcity to reduce the risk of neglect, or preventable

catastrophic incidents. The care that I would be providing at these times is without

question, a massive deviation from normal realms of parenting. This application has been

difficult, time consuming and I am still without an answer. As a family we have no option other

than to attend to her if she has no known/skilled support workers available, which has led to

financial loss, burnout and discontent with the ‘system’. We as a family have suffered enough

under the system in place, and yearn for change.

The only reprieve I have been afforded in the last two years has been by using Independent

Support Workers, whose independent rosters allow them flexibility and they are able to

communicate with me directly about shifts. I can choose which staff I would like and when I

would like them. I can interview and choose staff based on long term suitability. I can

communicate and train staff without the restraints that are imposed by service providers. For

years agencies have dictated to me which staff are available and from what times. There is a

real place for independent support workers. They are filling a huge gap in the market and they

can offer participants greater choice and control, which is a breath of fresh air.

I could talk at length about so many areas that affect persons with a disability and also give my

thoughts on repairing, rebuilding the disability sector/culture and would be more than happy to

do so but I am aware of the request for shorter, more succinct submissions at this stage.

Thankyou for your time and consideration, looking forward to hearing back.