Submission to the Senate Committee

National Disability Insurance Scheme (Getting the NDIS Back on Track No. 1) Bill 2024

ABN 91 667 547 122 AR Services Group

12 July 2024

to those who have the privilege and opportunity to shape our nation,

my name is Ashleigh Rae.

i am 33 years old and live with my cat, Lily, in Victoria.

i live with multiple disabilities and chronic health conditions, including Type 2 Diabetes, Progressive Keratoconus (a vision impairment), Autism Spectrum Disorder, Attention Deficit Hyperactivity Disorder, and Postural Orthostatic Tachycardia syndrome.

I am an NDIS participant and the Director of AR Services Group, a company that provides services to NDIS participants. These factors place me in an unusual position to share feedback regarding the proposed legislation, which is informed by my personal and professional experiences.

I have personally been a participant of the NDIS for just over a year now. I believe it is important to state upfront I am thankful we have the NDIS - and my goal, personally and professionally, is to be part of shaping the NDIS for its long-term viability and to contribute to it becoming a system in which the disability community feels safe to engage with, and the Scheme to truly place the needs of the participant first.

Statement on the Proposed Legislation

In short, I want to see the NDS be the best it can be, embedded in our society and culture for generations to come, and something every Australian can take pride in.

The proposed legislation before you for consideration undermines the purpose of the NDIS and hardwon meagre protections for people with disabilities in Australia.

Legislated co-design principles are not negotiable for the scheme to work for its intended purpose now and in the long term. Co-design is fundamental to protecting and enhancing the rights and independence of people like me and everyone within the disability community. I urge you to require the government to embed and legislate co-design principles within the proposed legislation.

A Minister who does not have a disability and has not been a participant of the NDIS, nor have they been educated or worked on the frontlines of disability and community care, cannot and should never be in a position where they are not compelled to engage in co-design principles of the NDIS. Should these principles be neglected in the legislation, this would enable a Minister to ignore the needs of the very community they have been given the privilege and responsibility to ensure care and support to, and unravel the work of countless advocates, politicians, people with disabilities and organisations for decades to build empowerment and independence.

I am a person with several disabilities that inter-relate with each other and often trigger flare-ups and compound the functional impacts of each other. Already, it is difficult for a participant with more than one disability to have their support needs recognised, and for the NDS to acknowledge how one or many disabilities inter-relate and impact a persons whole life. In my personal experience, I have been denied the support I need, including Support Coordination, Short Term Accommodation (STA), and allied health funding, despite ample evidence being provided and clearly articulated for the specific purposes of NDIS.

This has meant I have been without care and support when its mattered most, and the support I could access has had to be carefully rationed out with no room for increased support needs should my disabilities further fluctuate. This has meant Ive been at risk of homelessness, rendered unable to work and earn an income, and Ive experienced serious financial distress that resulted in further developing Stage 2 Hypertension as well as a serious mental health crisis that came too close to an emergency psychiatric hospital admission.

This is happening now, in the present, to me.

In my case, these impacts could have been avoided and mitigated - if I had been appropriately supported and my plan had been built by someone able to comprehend the complexities of my disabilities and how they inter-relate.

For me, the NDIS understanding that my disabilities inter-relate and are complex, should result in appropriate care and support. For the NDIS to be successful in its stated purposes, those who make the policies and vote on the legislation must recognise that people with disabilities like me, are whole and complex human beings - I have, like other people (disabled or not) aspirations for my life - I want to finish my Bachelor of Social Work at a local University, and have a meaningful career.

I want to work in a meaningful profession, travel, have lifelong friendships, and love and be loved. Over my lifetime, my care needs will change as I experience fluctuations in my functional impairment and move through different life stages - the NDIS must recognise that for people like me, a failure to embed the recognition of a ‘whole person approach’ means denying care and support to people.

This means the government has the power to decide if someone like me can have a truly informed and free choice to be a Mother or not, to work, study, change jobs, and design their lives to appropriately accommodate their needs and aspirations.

The NDIS is notorious for advising participants and those attempting to access the scheme for the first time that somehow, the evidence they have supplied is inadequate, with no clear path forward or guidance given on precisely what is needed and how to meet unspecified criteria. In addition, the NDIS faces a bigger problem when it comes to reports produced by allied health practitioners - there are no clear standards of evidence for allied health to follow or pathways for allied health providers to engage in learning provided by NDIS.

Physiotherapists, Psychologists, Occupational Therapists, Social Workers and more alike have not been required to adhere to any minimum reporting standard by the NDIS when supporting a participant or assisting with an access request. If the NDIS wishes to mandate a needs assessment, it must first and foremost set a minimum reporting standard and provide an abundance of educational resources for the public to access so these requirements can be understood and adhered to - this includes the internal training and development of NDIS staff in reading and comprehending the required reports, and a staggered strategic rollout and communications strategy to inform, educate, and resource every stakeholder to facilitate the best possible outcome for all.

In addition, the NDIS/NDIA must consider the costs involved for allied health practitioners to complete the training, develop the required reports, and the barriers people attempting to access the NDIS will face - a very real risk of mandating these

assessments and reports will be lost and exhausted plan funding for participants as they attempt to comply with the requirements if inadequate time and resources are not made available.

Limitations on how funding can be utilized are already in effect, but it is important to note that the NDIS/NDIA is stealthily doing its utmost to push participants and providers to become NDIS-registered or Agency-Managed. This has personally happened to me and, in my professional capacity, to several participants my corporation supports.

This year, after lodging a Change of Circumstances application in January after obtaining additional evidence for my personal NDIS plan, I received three separate plans, in three months. The first plan I was excited for as it would have been the first plan that recognised my vision impairment and had been built to somewhat cater to those needs more. A few days later, I received a second plan, in which I found someone (I still don’t know who or why) at NDIS/NDIA had manually changed the funding type from Plan Managed to Agency Managed. This change happened without discussion, explanation, or consent, and in real terms, it meant I lost my support team instantly, as none of them were registered providers. As someone who is legally not permitted to drive due to their disabilities, this was personally devastating and posed serious risks to my wellbeing as my independence was, without notice, torn away from me.

I lost my gardener, cleaner, allied health and support workers. I was left isolated, without care delivered by people I trust and have built strong, healthy relationships with. I was told to simply engage new providers, as if this would be easy to do when the impact of suddenly losing all your support means you can’t work and are just a week or two away from being homeless and even though multiple complaints were raised through the office of Bill Shorten MP and the NDIA Quality and Safeguards Commission, nothing was done to support me and ensure continuity of care, for over eight weeks.

I was told repeatedly that I did have funding to use; the provider just needed to be registered. As a provider myself, I am all too aware of the exploitation and risks of working with registered providers. Registration is no guarantee of safety or quality of care and support, but it does enhance the risk of exploitation and harm.

This happened to me, someone who has the privilege of understanding more of how the NDIS works behind the scenes than most, and I couldn’t get the help, support and continuity of care I needed - let alone an explanation, discussion or resolution (my case has yet to be resolved at the time of submitting this document).

Forcing changes that limit how participants utilize their funding is harmful to me.

It means that I wouldn’t be able to access the regular or once-off support I need, and it fails to recognise me as a whole person with a complex life and support needs. Last year, I hired engaged a service that, on the surface, appears ‘out of the box’ - a personal stylist, as a short-term engagement. The stylist worked with me to help me find clothing that was accessible to me, and I felt great wearing. As a vision-impaired person, finding clothing I can comfortably wear and remove with ease isn’t always as easy as you might think - it’s difficult to tell when my clothes are damaged, dirty, stained or otherwise in ill repair. I can’t wear clothes with small buttons or that have ties, among other things. The flexibility of being able to engage a personal stylist taught me about garment care, fabrics, other useful things that have made a lasting impact on how I dress and present myself to the world, and my self-esteem.

Removing the flexibility to engage services that addresses a ‘whole person approach’ removes my ability to have any choice and control over my life, including choices over who and how supports are delivered to me, and further stigmatises the disability community and segregates us from the broader Australian community and society.

Funding needs to be flexible, because it needs to accommodate and recognise that we are human beings, who deserve and are worthy of dignity, respect, and having whole and vibrant lives. Disability does not mean we have nothing to offer the world, and that we don’t deserve choices.

In the case of suspected funding misuse, I agree that processes should be clearly outlined and made clear and accessible to the staff of the NDIS/NDIA and to participants and other stakeholders. However, I strongly encourage the Senate Committee to consider an ‘education and resources first approach’ before engaging in extreme measures that, with the stroke of a pen, can result in the most serious of consequences: the loss of lives.

An education and resources first approach should aim to engage participants to understand how, why and if funding has truly been misused. This means understanding the circumstances under which it may have happened, and the causes/reasons - including consideration of whether or not the participant has been appropriately funded according to the evidence supplied, including funding for Psychosocial Recovery Coaches/Support Coordinators.

Raising debts and changing a participant’s funding management type as the initial response to suspected funds misuse is not only punitive, unreasonable and irrational, but it also compounds and proactively contributes to undermining what the government is claiming are their intended outcomes - to ensure the longevity and

Sustainability Concerns Regarding the NDIS

Sustainability of the NDIS. This, as a knee-jerk response, will result in further costs to the NDS as the well-being of a participant deteriorates due to the impact on their mental health and wellbeing, and in some cases, death.

If the government is serious about its intentions to ensure the longevity and viability of the NDIS/NDIA, I have a single strong, urgent recommendation: clean house.

Confusion, discrimination, bullying, disrespectful and inaccessible interactions are the daily reality for participants and providers with the NDIS. Participants are outine subjected to ableist comments and prevented from engaging in discussions about their funding with the NDIS. In one recent case, in writing, a participant my company supports was informed by their LAC that during an implementation meeting, they were not permitted to speak, and if they wanted to speak, they must inform the LAC ahead of time and advise them of what they wished to say, and no support person would be permitted to attend with them, and that no accommodations would be made to support them during the meeting. In another recent case, a participant I have supported was informed by their LAC that they were ineligible for Support Coordination due to their disabilities (Autism Spectrum Disorder, Level 3 support needs). In another example, another participant my company supports underwent a plan reassessment and myself and another member of my team experienced bullying behaviour and professional misconduct from the participant’s Planner - each of these examples (and there are many more) have happened to real people, in need of real, respectful care and support, in the last three months alone.

Many of these interactions could be entirely prevented and mitigated if those employed directly or contracted to provide NDS/NDIA services (especially Local Area Coordinators and Planners) are appropriately trained not only in NDIS/NDIA policy and processes but also in their ability to comprehend evidence, manage conflict, navigate difficult discussions, and on induction to their role are required to undertake training on working respectfully with the disability community and mandated to refresh this training periodically.

Too often, in my work I’ve had to raise complaints about the personal beliefs and values a member of the NDIS/NDIA staff have imposed on a participant and their plan, resulting in a loss of necessary funding despite clear evidence at the cost of thousands of taxpayer dollars.

Too often, planners and LACs build plans with the expectation that a single type of support is all a participant needs - commonly, this looks like denying funding for physiotherapy, but instead funding an exercise physiologist for a minimal number of sessions with the expectation they will teach a Support Worker the exercise routine

Page 7

to implement with the participant without ongoing oversight, and adding a significant workload for the support worker, that is unsafe for them to implement on top of their regular duties (with the participants plan lacking any room for additional Support Worker funds to accommodate this extra work).

On this last point, I reiterate that to achieve a long-term, viable NDIS/NDIA; I strongly encourage the Senate Committee and others to review the internal culture, practices, policies and management of the NDIS - and to make necessary changes that will result in a healthier bottom line - many of these changes won’t require new legislation, and represent a reasonable and necessary undertaking with value for taxpayer money.

In closing, I encourage the Senate Committee and any others with the power to do so, to stop this bill in its tracks.

This bill has been rushed through parliament, and there has been a distinct lack of inclusion of the disabled community and those who care for us in its development. Yes, the NDIS is broken and needs change - but it should not come at a breakneck speed that is proactively causing serious harm to those it’s intended to care for.

The proposed legislation poses real dangers to the disabled community, and this impacts everyone - because disability can happen to anyone at any time - regardless of your job, education, personal wealth, faith, or ethnicity.

For this reason alone, it is worth taking the time to get such powerful legislation right - to properly consult and include the disabled community and other stakeholders and to take our concerns and suggestions seriously.

Thank you for your time and consideration,

Ashleigh Rae Director of AR Services Group