Dear Parliamentary Committee,

I write as an Australian woman with disability to convey and emphasise my concern at these proposed legislative changes.

Background:

I am 28 year old, and live with a rare neurological condition. I am primarily housebound or bed-bound depending on the day, however enjoy leaving the house when I am able to.

Primary concerns around these changes

Needs Assessments

My first, most pressing and primary concern is around needs assessments. These concerns surround the following factors:

1. The short term, standardised and single clinician nature of these assessments

Whether needs assessments take place over a few hours, several days or even weeks, I write to emphasise that short term assessments may systematically disadvantage a significant number of cohorts.

These include:

• 1.1 People with complex needs, including those with multiple diagnoses which are best and most accurately assessed by an interdisciplinary team

• 1.2 People with rare conditions, who’s needs are unlikely to be understood by anyone apart from a specialist.

    - **1.2.1. For example**, in my case I am not just able to see a neurologist, I see a specialist neurologist, of which there are only a few in Australia. When I enter a hospital, often the team haven’t heard of my rare condition and have to consult or bring in a specialist. How can people with disabilities be confident that for example an occupational therapist will have a level of understanding and knowledge in order to accurately assess their needs without a multidisciplinary team?
  

• 1.3 People with autism, psychosocial, intellectual disability, some of whom may struggle with awareness of their needs, and therefore may struggle to articulate them within a short term assessment context like an needs assessment

• 1.4 People with co-occuring psychosocial and physical disability which can often be complex and require an interdisciplinary team with different specialties for an accurate assessment

• 1.5 People with significant functional impairment, which is often complex in nature and requires a wide variety of different assistive technology and support options too time intensive to accurately assess over a number of days or weeks

• 1.6 Individuals whose conditions rely heavily on observation based assessments or who under report their needs due to stigma, negative experiences or limited understanding

• 1.7 Invisible disabilities or variable disabilities who may be more impacted by short term assessments

Section Headings

1.8 Autistic women.

Research on autism presentations in women is emerging, as the majority of research to date has been conducted on autistic men. As a result, autistic women have less widely understood presentations best assessed by a specialist.

1.9 People who may require culturally aware assessment

Concerns around the development, modelling, reasons and justifications for the introduction of needs assessments

The proposal of this change highlights a lack of understanding of disabled people and their needs. It is not just nor reasonable to substitute the advice of one health professional in a short term assessment as opposed to the expertise of a team of professionals who have worked with an individual for years.

The human and financial resources needed to effectively implement needs assessments

Hiring one professional short term, or even a few, to make a final decision may be cheaper than a number of complex assessments over the longer term. However, this decision is cheaper because it is reached more quickly, with less information, and by someone with less cumulative expertise than a trained specialist team working together. Ultimately resulting in a poorer quality, even inaccurate assessment, that may not accurately capture need. This is dangerous. Vital points could be missed, inaccuracies could become commonplace, and the change would be anticipated to result in widespread neglect and harm, paralleling the recent robo debt scandal.

There are also concerns around how the number of clinicians for needs assessments will be sourced, and whether this could result in a pathway from university to needs assessments, tasking the most inexperienced of clinicians with the most complex of tasks.

The independence, qualifications, training, expertise and quality assurance of assessors

These assessments are ultimately funded by the government/NDIS. Such a contract would be an enviable opportunity for any agency - ensuring ongoing, stable work, in significant quantities. As a result, agencies will be highly motivated to obtain and retain the contract. Perhaps the easiest way to achieve this is to save the NDIA more money than any other agency that might contend to be a needs assessor. As a result, the organisation contracted is highly motivated to cut plan costs. This is a substantial threat to the quality, independence and accuracy of assessments.

Regardless of the training, qualifications and expertise of the needs assessors, no assessor is able to make an adequate assessment of disability over the course of several hours, or even multiple days. This is especially the case for complex disabilities, or for a person who has multiple disabilities. For example, with my occupational therapist, observations over the course of a year long period enabled her to pick up that I had a cognitive element to my disability which was effecting multi step processes that would have almost certainly been missed in a short term context. This observation greatly impacted later recommendations.

The appropriateness of the assessment tools selected for use in needs assessments to determine plan funding

No tool is adequate to accurately and comprehensively assess the needs of NDIS participants, unless the assessment takes place over a significant period of time, and is administered by the multi disciplinary specialist team who regularly works with the individual. This long term process is critical for a number of reasons.

• First, due to the nature of the communication barriers associated with many disabilities, as argued previously.

• Second, it is critical to observe long term patterns of behaviour, in order to pick up on any barriers that may only become apparent through time and experience with the individual. Expecting people to be aware of and able to articulate all necessary factors is impossible, especially within a short space of time. Standardised assessments with unfamiliar professionals will lead to inaccurate plans which could create a step increase in hospitalisations, further putting pressure on a stretched hospital system.

6. The implications of needs assessments for NDIS planning, including decisions related to funding

I personally have experienced having an underfunded plan, and ended up in hospital for almost half a month as a result. Rather than funding the supports I needed to live, the NDIS declined them. As a result, I ended up in hospital, re-learning how to walk at the age of 24. If they had have funded the supports I needed in the first place, this would have never have occurred. The stay cost more than the supports I had originally requested.

When quality of life is perceived as too expensive, this is what happens. Please put a stop to this. Trust my qualified team of professionals with my life, and with deciding what supports I need, as I do.

Under these proposed assessments, a stranger would determine my needs. Whether I can have enough support that I can have washed hair. Leave my bed. Leave my house. And I have to hope they make the right decision. Hope I didn’t forget anything. Hope they’re qualified enough to understand or even have heard of my rare neurological condition.

7. The appropriateness of needs assessments for people with particular disability types, including psychosocial disability

Needs assessments could exacerbate psychosocial disability by increasing anxieties around reassessment and an unfamiliar clinician.

Rapport building and trust are crucial aspects of accurately assessing complex psychosocial disability, which would likely be missed in a short term context.

This, combined with many participant’s reported distrust of the NDIA could resulting in widespread disengagement and exacerbation of severe psychosocial disability, including presentations with paranoia.

8. The impact of similar policies in other jurisdictions and in the provision of other government services.

Centerlink has a similar needs assessment process, however there are key differences. Centrelink largely aims to assess less complex categories, such as ability to work, and financial need. It also does this with a great deal of consultation with a person’s professionals. Additionally, Centerlink works largely on a threshold basis. For example, once a person has reached a certain threshold, they’re assessed to be able to work a certain number of hours or less. This frees Centerlink assessor from having to determine the exact nature of the need or extent of a condition - once someone has met the threshold, they’ve met it, and all additional factors can be disregarded.

In contrast, the NDIA is attempting to assess a person’s life and disabilities as a whole. A team of professionals may have to work with someone for a year or more, in consultation with each other, before they get an accurate picture of what the person’s life is really like, and what supports are required.

Concerns Regarding Assessments Under the Proposed Legislation

This process involves a number of complex aspects, such as long term observation, follow up, incorporating reports from other professionals, self report from the participant, and data collection from a number of other domains. This is especially important as, as highlighted previously, many people with disability struggle with being aware of, and communicating their needs. Therefore, patterns that are critical to understand may only become apparent through long term observation for months, or even years. Professionals working with an individual over a long term period are also able to more accurately assess the course and nature of a disability. As a result of all these factors, in contrast to Centrelink assessments, something as complex as NDIS must take every factor into account, and rely on people’s regular professionals, not short term needs assessments.

9. Concern about the absence of legislated appeal options

It is of substantial concern that these assessments do not appear to have a clear, legislated pathway to appeal or obtain specialist external assessments.

It is also of concern that participants would not have specialised assessors for their needs.

Lastly, it is of concern that the NDIA would, under the proposed legislation, have the right to determine the reasonableness and whether to approve decisions that disagree with the NDIA. This is a clear conflict of interest.

10. Concern about the opportunities for contributions of established

professionals

It is also of concern that professionals who are well established with a participant may no longer have their views taken into account.

Additional concerns outside of needs assessments in the proposed legislation:

• The legislation appears to be primarily concerned with how disabled people’s disabilities impart the lives of people around them, and building their capacity so they won’t be a burden, financially or otherwise, rather than quality of life for the person with disability themselves

• Arbitrary target areas such as white goods do not take into account that people with disabilities are a) often unable to afford these items on the disability pension b) they are sometimes critically dependant on them as a direct result of disability.

• Declining white goods sounds reasonable on the surface, however when it comes down to declining a heater for a man who lacks the physical ability to produce heat and self regulate body temperature due to disability, and is unable to afford a heater, this can result in costly and unnecessary hospitalisations.

• I am concerned that co-design appears to be a post legislation consideration, and is not currently enshrined as a fundamental and guiding principle in the legislation

• People with disability should not have to exhaust time and resources to contributions that are performative in nature

• I echo the calls of others for the Minister to provide a statement describing the nature of the consultation, the people and organisations consulted, and a summary of the views expressed by those people and organisations, for all legislative instruments made under the NDIS Act.

• I, like much of the disabled community call for a whole person approach as conditions are often intertwined, difficult to seperate and impact the delivery of services and equipment on a practical and fundamental level. For example, if someone lives with two neurological conditions, and only one is funded, they could end up with a wheelchair granted that is unsuitable for their needs and therefore a waste of funding. Alternatively, someone may have behaviours or psychosocial disability factors which are not NDIS recognised but that greatly impact the delivery of supports or services. Are we to tell support workers, sorry there is a stabbing risk, but it’s not NDIS registered so no behaviour support plan?

• I too have concerns about the extent of the newfound powers proposed that the CEO and their delegates would have access to and the lack of transparency around how this would operate

• People with disabilities have years of lived experience with their lives and disability needs and this experience does not appear to be adequately accounted for in the current proposed decision making process, participants appear to have greatly reduced say in their lives and what they need

• I express concern around the new found powers the NDIA would have to compel people with disabilities to undergo mandatory medical assessments and the implications on dignity, privacy, confidentiality, and human rights

• I am concerned that people with disability may be subjected to involuntary and unnecessary assessments with unknown or non specialised clinicians

• I note that able-bodied people are not required to undergo mandatory government medical assessments to assess their lives in their entirety and ask of parliament how they would feel if they were in our shoes

• I am greatly concerned that additional funding is only able to be granted if there is a threat to life, health or safety as this could exclude crucial considerations around quality of life, ability to work, participate in community, and the right to equal opportunity.

As a woman with disability myself, I can see countless ways to simultaneously:

• Improving services for people with disability
• Drastically reduce the cost of the scheme
• Fund plans in a smart, effective way
• Build a brighter future for disabled Australians

That do not involve any of these harmful changes. I recognise that potentially this non ideal path has been chosen because there may be perceived to be no other option, however there are many other options.

I am confident that should the minister approach the disabled community, we would be happy to assist with making the scheme far more cost effective while bettering the scheme for everyone. If the scheme, support categories, and planning process in particular were resigned by people with disability, I am we could propose highly cost effective, innovative solutions such as alternate categories that could restore the scheme. I invite collaboration, innovation, and a better path to scheme sustainability.

I thank the committee for its time and consideration, and to all those who have taken the time to speak out for people with disability and our future.