Senate Community Affairs Legislation Committee

PO Box 6100 Parliament House Canberra ACT 2600 Australia

Dear Senate Community Affairs Legislation Committee,

I am writing to share my concerns about the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024. I am a person with a disability, a mother to children with disabilities, and an Occupational Therapist.

This submission provides an overview of my personal and professional experiences working alongside the NDIA. It shares my concerns regarding the Bill, examples of my professional experiences to justify my concerns, and possible alternatives to the parts of the Bill I am concerned about.

For my family and I, the NDIS has made significant impacts to the way we are able to live our lives, and the way we are able to participate in, and contribute to society.

I am a middle-aged woman with Autism, ADHD, Anxiety, PTSD, and other co-existing mental health conditions. I was not diagnosed until well into adulthood, and as such, have experienced a range of physical, emotional and financial barriers, all of which have impacted my ability to effectively and independently participate and contribute to my community. I am not personally on the NDIS, however, I do work as an Occupational Therapist with participants of the NDIS, and two of my three children are also participants of the NDIS. As such, I have seen

• firsthand how access to the NDIS, and appropriate therapies can impact the lives of not only those with disabilities, but their families also. Especially when compared to services available prior to the introduction of the NDIS.

My eldest child was diagnosed with Autism in 2006-2007. This was well before the introduction of the NDIS. At this time, I was a young, single mother, struggling with my own mental health, financially struggling, and feeling incredibly overwhelmed by what I was going through with my cild. Due to my own inability to emotionally support this child, combined with the lack of financial ability to pay for ongoing therapies, this child too, experienced trauma. Their mental health suffered significantly, our relationship, for a long time, was fractured, and they attempted suicide on multiple occasions. We were lucky enough to be able to gain access to community-based services such as CAMHS and Redbank (where they had a three-week residential stay at the age of thirteen due to suicidal tendencies). However, these supports were insufficient, and limited, creating a fear of mental health workers and medical practitioners, and further contributing to their trauma. This child did not gain access to the NDIS until 2022, as they could not bring themselves to even leave the house, or meet new people, to access assessments and reports required to apply for funding. Since having access to the NDIS, this child (25 years old) is now able to work from home up for to 10 hours per week, can access (and is now willing to attend) medical appointments, receives ongoing and consistent allied health therapies, and is starting to work through their trauma. There have been no suicide attempts in the past 18 months, and call outs to emergency services for mental health have significantly reduced.

My youngest child was diagnosed with Autism, ADHD, GAD and sleep disorder in 2018 (as a five-year-old). They were able to access early intervention through the NDIS, and as such, have received a range of ongoing, consistent therapies and other support services which have assisted them to make amazing progress with their physical, emotional and social health and wellbeing.

While there are still many hurdles to overcome, this child has been able to overcome many of the barriers faced. Their experience with therapies and the health system is so drastically different to that of their sibling and has provided them with so much more opportunity grow and contribute to society. For example, this child, at ten years of age, is able to independently walk to the local shopping centre, purchase items from a list, pay for these items, and walk home, before going about the rest of their day. Something that their older sibling, at 25, is yet to achieve.

After hearing about this Bill, I am worried how these changes will impact both of my children, myself as their parent, my work as an Occupational Therapist, and the potential impact to NDIS participants that I work with.

The following parts of the Bill that I am most concerned about are:

• Reasonable and Necessary Budgets Changing from ‘reasonable and necessary supports’ to ‘reasonable and necessary budgets’ will limit the supports people can access. In a lot of cases, people with disabilities require life-long supports in order to maintain achievement of their NDIS goals, most of which are based on being able to live an “ordinary” life. The need for these supports may fluctuate significantly over time depending on the persons physical and mental health. However, if their budget does not provide enough funding to access these supports

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in a timely manner, the negative impact on the person and their family can be devastating.

When looking at the cost factor, short-term cuts in funding for supports have the ability to create the need for a significant increase in long-term costs.

Bill Shorten’s comment of “Budgets are being overspent before the expiry of plans,” and the referral of “automatic top-ups” being “loopholes” is offensive. As an Occupational Therapist, I have on many occasions made recommendations for the provision of supports that were reasonable and necessary, only for the NDIA planner to not even look at the report and recommendations, or state that these recommendations are not necessary, and fund less than a quarter of what was recommended. It is situations like this, that lead to budgets being “overspent” before the expiry of the plan.

For example, in 2020, I personally recommended a 60-year-old participant with poor mobility and bladder and bowel incontinence have a major home modifications assessment and report completed as they were a high falls risk. The modifications were for 1) the removal of their bath, as the shower was over the top of it, there was no possible, safe placement for rails, nor did any other portable assistive technology safely fit the space to prevent falls in the bath/shower; and 2) a ramp from both their front door and back door, so that the participant could independently and safely exit their home using their walker.

A Major home modification report was completed, a quote sent to the NDIA, and the report declined, as by the time the NDIA

• reviewed the request, they deemed that the quote was too old. By the time a new quote was submitted, the report was too old.

• This has been the response merry-go-round now for almost four years, with additional assessments, reports and quotes being completed and supplied to the NDIA, all using this participants funding. Funding, which when added up, could have easily been used to pay for at least half of the modifications initially requested.

• This participant is now 64, they have had multiple falls, multiple ambulance call outs and multiple trips to the hospital. This is all paid for using tax dollars. The support worker hours, that were meant to be used for community access, are now being used for in-home supports to assist them in showering. This is required twice daily due to bladder and bowel incontinence, however, is only done one daily, due to limited funding. Due to not being able to clean themselves properly, this participant frequently gets Urinary Tract Infections, requiring hospitalisation and medication, again, funded by tax dollars.

• The participant is unable to participate in the community and are essentially stuck in their house, due to not having supports to assist with community access, and being unable to physically leave the house, due to not being able to manage the stairs at either the front or back entrance.

• As their community access funding is less than the support required for daily personal care, this participant often “overspends” their budget before their plan expires.

• This is not due to the participant, their support coordinator, or their other supports taking advantage of the NDIS. This is purely due to

the NDIS not listening to the participant OR their advocates, or reading and following the recommendations in the multiple reports that have been submitted over the past four years. Instead, the NDIA have created a whole lot of red tape, forcing the participant to spend tens of thousands of dollars on assessments, reports, and obtaining additional quotes for the same work that was initially recommended in 2020.

The participant is losing independence, rather than gaining it. They have to choose between leaving their house or safely achieving personal hygiene. This is the exact opposite of what the NDIS was originally designed for.

I wonder if the Minister for Disability, other politicians, or NDIA planners were faced with this situation personally, what would they choose?

My solution to this problem would be for NDIA planners to actually read and follow the recommendations provided in reports and provide the required amount of funding in the first place. This is a sure-fire way to reduce automatic top-ups. Participants may find that they actually have funding left over in their plan at the end of the year. The NDIA could then potentially roll over this funding, either topping up to the recommended amounts required, or leave it there in addition to the new funding to be used as surplus in case of emergencies in the following plan.

2. Narrower Definition of Supports The new definition of supports are too narrow. Being too specific with definitions will exclude important supports that people need to be part of the community and achieve their goals.

For example, I am an Occupational Therapist. I work with people of all ages and abilities, in a range of environments, and across the lifespan. It is a very broad field, with no specific definition. This is because, to put it simply, we help people to achieve their goals by looking at the person, the environment, and the occupation (i.e. the goal).

The Occupational Therapy Australia definition of Occupational Therapy is “Occupational therapy enables people to participate in activities they find meaningful. These activities include taking care of oneself (and others), working, volunteering, and participating in hobbies, interests and social events.”

I have specialised in Equine (and other Animal), Assisted Occupational Therapy (EAOT). This is where I use horses or other animals to aid in facilitating engagement in therapy. All goals, programs and interventions are based on a combination of the theories and Occupational Therapy models including the Person Environment Occupation Performance (PEOP) model of Occupational Therapy and Occupational Performance Model (Australia), (OPM-A) Model of Occupational Therapy, the Human Animal Bond and the PACE Model of Animal-Assisted Therapy. All of these models and theories have significant evidence to justify their use.

This type of therapy can be even more broad, as there are so many ways to use the animals as a means to goal achievement. For example, I have used EAOT to teach a teenager how to wash their hair and the importance of personal hygiene, and I have also used it to teach a 55 year old how to feel the signs that their body is stressed, and then how to calm their body down and relax

Enough to be able to clear their “brain fog”, in order to complete a simple task. Each of these participants have learnt two very different skills, in very different ways, and have taken what they learnt with the horses back into their daily life. This has then enabled them to start to achieve some of their NDIS goals.

My concern with this part of the Bill is two-fold:

Firstly, the animals I use in therapy are not “assistance animals” as they are trained to work with ALL people, not just one person. There is also not currently any certification for animals, other than dogs, to become accredited therapy animals. It is on the therapist to learn about and have experience in horsemanship, animal behaviour, and human-animal interactions. I have spent tens of thousands of dollars completing training for this, as well as setting up my practice to specifically use this type of therapy for those who would benefit from it.

I have participants of all ages who will not attend any other therapy service as they have trauma surrounding other, clinic based services. I have teenage participants who have out-grown “regular” therapies and refuse to engage, therefore, plateau or regress with their self-care and other goals, yet come to EAOT and thrive in this environment.

I am concerned that if the use of my animals in therapy is declared as funding for “non-Assistance Animals”, my participants will lose an extremely valuable service that promotes engagement and increases the likelihood of efficient goal achievement.

Secondly, while I do not claim to practice “Somatic Therapy”, we often use the same principles in sessions where the participant

• may require emotional regulation. I am concerned that if I were to

• use language similar to that of Somatic Therapy when making

• recommendations, my participants will be refused funding for the

• service.

• Services such as Equine Assisted, Animal Assisted and Somatic

• Therapies are a valuable asset to the NDIS as they provide People

• with Disabilities the opportunity to engage in services and activities

• that have meaning and purpose to them. Regular clinic or

• community-based therapies work well for a lot of people, however,

• there are many people who have been attending therapies their

• entire lives without making progress. Access to services such as

• mine provide alternative therapy solutions, based on evidence,

• justification and clinical reasoning, and provides additional

• motivation for the participant to attend and engage in services,

• thus increasing their chance of achieving goals.

3. Increased Powers for the NDIA The NDIA already have the power to request additional assessments and information from participants to ensure that they are receiving the correct funding. My concern regarding this is the amount of time and money being spent on requesting new assessments and reports, or on asking people to undergo assessment by an independent assessor. The NDIA are already well known for making participants and service providers complete excessive amounts of paperwork in order to obtain essential funding for participants. I have personally been asked by NDIA planners to complete additional reports or amend previous reports as they do not have the “correct wording” to justify the recommendations.

Often People with Disabilities and their families are so fatigued by the amount of work they need to do in order to receive services required to live an “ordinary life”, that they do not have the time or capacity to attend additional appointments or speak to new people, particularly if they are already in crisis. I am also concerned that if people do not comply, their plans could be suspended or revoked, further impacting their ability to recover if in crisis, or if they have complex needs.

Again, this is the exact opposite of what the NDS was originally designed for.

4. Restrictions on Self-Managing Funding I currently Self-Manage my youngest child’s NDIS funding. My eldest child is Plan managed. For my youngest child, I personally find self-managing means that they get consistent access to their supports. I have control over who they see. We can take a break from services such as Psychology when they are doing well, however, when things start to change and they need help in this area, we are able to arrange an appointment reasonably quickly, rather than going on a waiting list again for another two years.

This ability to have Choice and Control of my child’s services allows me to save funds when needed and put any additional funding towards services that are more necessary at that point in the time. My understanding is that the NDIS was designed to do just this – provide Choice and Control for participants and their families so that they are better able to achieve their goals.

While I do know that it can be difficult to keep up with claims, payments and invoices, surely the NDIS can configure a

Submission Regarding Concerns About the Proposed Changes to the National Disability Insurance Scheme

spreadsheet or other tool to aid in the management funding? I personally use a spreadsheet on Excel (nothing fancy) to manage my child’s funding.

Overall, I am worried that this Bill moves away from the original vision of the NDIS. The NDIS is meant to give people with disability choice and control over their supports. This Bill is more focused on saving money than helping people with disability.

I think the Bill should be paused or stopped. There should be real co- design with people with disability. We need changes that truly meet the needs of people with disability.

I urge the Committee to recommend significant changes to this Bill or making other moves to save money. There must be thorough consultation with people with disability and our representative organisations.

The NDIS is too important to get wrong. We must get this right, with people with disability at the centre of the process.

Thank you for considering my submission. I would be happy to provide more information if needed.

Yours sincerely,