Joint Standing Committee on the National Disability Insurance Scheme: General issues around the implementation and performance of the NDIS

INTRODUCTION…………….…………….…………….…………….…………….…………….…………….………….

PART ONE: ACCESS …………….…………….…………….…………….…………….…………….……………..

• a. Permanence of impairment…………………………………………………………………………………3
• b. Reports are not being read………………………………………………………………………………….5
• c. Psychological damage to people with disability………………………………………………..…8
• d. Questions requiring answering. ………………………………………………………………………….9

PART TWO: THE ASSESSMENT OF FUNCTIONAL CAPACITY FRAMEWORK…………………….

A flawed foundation……………………………………………………………………………………………

Choice of professionals……………………………………………………………………………………….

Assessment time allocation………………………………………………………………………………..

Choice of assessment tools…………………………………………………………………………………

Relevance of assessment tools……………………………………………………………………………

NDIAs desire to compare…………………………………………………………………………………….

Discrediting of the profession…………………………………………………………………………….

Barriers created………………………………………………………………………………………………….

AAT will increase…………………………………………………………………………………………………

Mental health funding…………………………………………………………………………………………

Workforce issues…………………………………………………………………………………………………

PART THREE: SUGGESTIONS…………………………………………………………………………………………

CONCULDING STATEMENTS…………………………………………………………………………………………

INTRODUCTION

As an Occupational Therapist working with NDS participants and applicants, I have concerns around the implementation of the NDIS, including current practices and proposed changes. My concerns around current processes and the interface with proposed changes to the NDIS are outlined throughout the following pages of Part 1. There are bigger issues at play than the independence of assessments, for example, the widespread denial of access of applicants because of administrative errors and where this leaves some of the most vulnerable members of society.

I hold grave concerns for the future of people with disabilities in Australia with the proposed changes to the NDIS, announced by Minister Robert on 28th August 2020. Part 2 of this submission addresses those concerns in detail.

Without changes to access processes, the people who are being failed by the NDIS at the present time will continue to live from crisis to crisis without the help they require and are eligible to receive.

PART 1: ACCESS

Access to the NDIS is a significant process for people with disabilities to undertake. For many, it takes months to compile the necessary information and attend appointments with doctors and health professionals in order to access appropriate documentation.

Despite applicants supplying significant amounts of documentation, access is often denied on first attempt, particularly to those with rare disorders that are not on List A or B.

As a health professional, I have been privileged to work with and to ask many people living with rarer conditions about their experiences with accessing the NDS, some of which I share in the following pages.

PERMANENCE OF IMPAIRMENT

Applicants with conditions not contained in List A or B are consistently being rejected on the basis that their impairment is not considered permanent. This is despite considerable medical and health professional evidence supplied which clearly documents the cause and permanency of the impairment.

Case example: Client 1

Under the current access process, a client of mine recently submitted:

• Access request form
• Medical reports x 4
• Psychologist report
• Occupational therapy functional assessment (13 pages)

Client 1 was asked to provide further evidence that conditions listed had been fully reated and stabilised and if there were any appropriate evidence-based treatments that would remedy these. This information was provided (there was no further treatment available, and the condition had been treated and stablised).

The client was then denied access on the grounds of not having an impairment that was deemed to be permanent. When the client responded to the NDIA delegate and highlighted the words “permanent” in all of her submitted reports, of which she counted 13 separate references, the decision was overturned, and access granted.

NDIA delegates reject applications on the grounds of the impairment not being considered permanent, despite the medical evidence and allied health supporting documentation stating that it is, in fact, a permanent impairment.

Why is an NDIA delegate allowed to override the professional opinions of highly skilled medical and allied health professionals?

Delegates make decisions on permanency with little to no understanding of the condition calling the disability. Client 1 has a condition which is genetic, like countless other conditions which happen to have made it onto List A & B. While the NDIA has a right to determine if the impairment caused by the condition is permanent, NDIA delegates are not appropriate evaluators of this, due to their lack of health or medical qualifications. In the case of client 1, they blatantly ignored numerous professionals stating that the disability was permanent. Why?

I asked a group of people with a particular condition about their experiences of accessing the NDIS. Specifically, I asked:

  "Were you denied access to the NDIS (at any point on your journey) on the basis
   of permanency of your impairment caused by X?"

Of the 61 people who replied, 51 (83%) had been denied access on the basis of permanency of impairment at some point in their attempt to gain access to the NDIS; 10 people had not been denied access on the basis of permanency.

I also asked 50 people what types of evidence they supplied:

• 39 applicants included Specialist letters

• 37 applicants included a GP letter

• 31 applicants included an OT report

• 24 applicants included a Physiotherapy report/letter

                                                                Submission: Occupational Therapist    Page   4
  

Of 15 who confirmed eventually being accepted as participants:

• 7 of 15 applicants provided letters from Specialists, GP, OT and Physio
• 5 of 15 applicants provided a combination of 3 of the above
• 2 of 15 applicants provided a combination of only 2 of the above
• 0 applicants provided only 1 piece of evidence

Given the majority with these conditions seek treatment from clinicians with experience and knowledge in their rare condition, why are the reports provided being overruled?

b. REPORTS ARE NOT BEING READ

Valuable information about the applicant’s disability is being ignored by NDIA delegates in their decision making regarding access, resulting in applicants being denied access on the grounds of not meeting the disability requirements, in particular Section 21- 5.1 (b) and (c) of the National Disability Insurance Scheme Act (2013).

Applicants, like my clients, will continue to be rejected on the grounds of their impairment not being permanent, if no one reads their supporting evidence.

Interface issue: The proposed independent assessment process (see Part 2) appears to be designed to assess the functional impact of the disability, including their capacity for social and economic participation. This part of the process will only address the criteria set out in Section 21- 5.1 (c) and (d).

This change will not address the issue of permanency being denied because evidence is not read.

  5.1   The Act sets out when a person meets the  disability requirements. The
 requirements are met if:
         (a)   the person has a disability that is attributable to one or more intellectual,

cognitive, neurological, sensory or physical impairments, or to one or more impairments attributable to a psychiatric condition; and (b) the person’s impairment or impairments are, or are likely to be, permanent (see paragraphs 5.4 to 5.7); and (c) the impairment or impairments result in substantially reduced functional capacity to undertake, or psychosocial functioning in undertaking, one or more of the following activities: communication, social interaction, learning, mobility, self-care, self-management (see paragraph 5.8); and (d) the impairment or impairments affect the person’s capacity for social and economic participation; and (e) the person is likely to require support under the NDIS for the person’s lifetime.

                                                                Submission: Occupational Therapist    Page   5

Review and Improvement of Policies within the NDIA Access Team

It is necessary for the policies and systems within the NDIA access team to be reviewed and improved, or people will continue to be refused access to the NDIS based on incompetence of the NDIA delegates, rather than their disability evidence.

I have had countless clients who have submitted their access request with supporting documentation (from myself and others) to the NDIS, only to be asked to provide further information regarding the substantially reduced functional capacity. This has been despite my very detailed reports being submitted at the time of application. The applicants are submitting these reports with a significant amount of other evidence. Given my report has not been read on many, if not most occasions, one can assume other documentation has also not been read.

In some cases the applicant is forced to obtain and supply Supporting Evidence of their substantially reduced functional capacity to be further assessed, which is essentially to give details of the report they have already submitted! This costs the client money, adds to frustration and dissatisfaction with the process, and wastes the professional’s valuable time that could be spent providing clinical services to people with disabilities.

For those who are flat-out denied access and who choose to reapply, they are faced with the predicament of whether to file the same information in the hope that someone with more disability education reads their application, or to obtain new or additional reports, again at their own expense.

This is often the process just to be assessed as having a permanent impairment; there is still the substantially reduced functional capacity hurdle to overcome – even if they have submitted a 25-page OT report! It really should not be this difficult for someone with a disability to have his or her documentation READ.

If the NDIA delegates do not read the reports, how are they making a fair and informed decision?

The ‘system’ requests information be submitted, and then habitually fails to read/use the evidence provided. How is this going to be changed?

Example, Client 2:

I provided a 25-page Functional Assessment report, detailing at great length the specifics of her functional ability/limitations, and the professional recommendations made with regards to supports and assistive technology. This included Level 3 and 4 AT (e.g. wheelchairs) and complex home modifications. She also had a 12-page report from her physiotherapist who has been treating her for years.

Her application was rejected.

I called the NDIA upon advice and permission from the client. Within minutes it was identified that the reports had not been read, and instead, the client had been denied access on the grounds that she did not have substantially reduced functional capacity in any areas.

Understandably, the client was extremely distressed, and we discussed the possible need to have her admitted to hospital to keep her physically safe until the “mess” could be sorted out.

Shared with permission from Client 2:

“It was so devastating. It took the last of my family’s reserves (psychologically, energy wise and financially) to get the application together. We were drowning in so many ways and for it to be denied simply because the paperwork wasn’t read… I cannot express how gutting it was”

Within 4 hours of my phone call to the NDIA, the client had been contacted, and the decision overturned. An “administration error” was the reason given.

This is not acceptable.

How are NDIA delegates allowed to repeatedly fail to read evidence required, send letters of ‘denied access’ to clients without checking the evidence provided, and cause such significant distress and upheaval to the lives of people with disabilities? What systems are in place to reprimand delegates who repeatedly fail to consider all of the evidence? How is an apology for an administrative error enough compensation for the distress caused?

It is agonising to think about the number of clients who have been devastated by wrong decisions made by NOIA delegates. I have knowledge of one person who attempted to end her life because of the decision made.

                                                                 Submission: Occupotionol Thernpist    Page   7

Further examples:

Client 3:

Rare genetic disorder

• Submitted
  • Access request form
  • Medical evidence & proof of diagnosis
  • Occupational therapy report (8 pages) as proof of substantially reduced functional capacity
• Denied: No evidence of substantially reduced functional capacity
• Resubmitted SAME application: Made sure OT report was read
• Decision: Accepted

Client 4:

Genetic disorder

• Submitted:
  • Access request form
  • Extensive medical evidence of her diagnosis
  • Occupational therapy report (11 pages) as proof of substantially reduced functional capacity
• Denied: No evidence of substantially reduced functional capacity
• Appealed: Submitted another 5-page letter outlining what was already contained in the OT REPORT.
• Decision: Accepted

c. PSYCHOLOGICAL DAMAGE TO PEOPLE WITH DISABILITY

Psychological damage is being done to people with disabilities, by the NDIA.

To give you a glimpse into the reality of the impact of access decisions under the current model, I asked people with a rare disorder how they felt when they were denied access to the NDIS. I was met with response after response of devastation, invalidation and trauma. At least one person reported a suicide attempt.

“The impact has scarred me, and the new forced assessments terrify me as I can’t afford to lose my supports”

“I wanted to give up. I felt suicidal and family didn’t want to leave me alone for a good 48 hours. It’s so damn hard to get the application together to then be told “nah you didn’t convince us enough. Go back to the beginning and try again”“.

“I’m living in a state of not wanting to be alive because if this is living, I don’t want it. I’m constantly exhausted and in pain and struggling to get the bare minimum done in life”

People with Disabilities

People with disabilities, especially those who have rare disorders that are not well understood, are extremely vulnerable and have limited access to funded supports since many state-based services were rolled in the NDIS. This leaves these people at risk of physical and emotional damage, neglect and poor outcomes.

QUESTIONS REQUIRING ANSWERS

1. Why is an NDIA delegate allowed to override the professional opinions of highly skilled medical and allied health professionals providing evidence of permanency or substantially reduced functional capacity?

2. The ‘system’ requests information be provided, and then habitually fails to read the evidence provided. How is this going to be changed?

3. Interface question: How is this (failure to read evidence provided) going to be addressed so that applicants are assessed based on ALL of the information provided, not just that which the delegate chooses to read?

4. If NDIA delegates do not read the reports provided, how are they making a fair and informed decision?

5. How are NDIA delegates allowed to repeatedly fail to read evidence required, send letters of ‘denied access’ to clients without checking the evidence provided, and cause such significant distress and upheaval to the lives of people with disabilities?

6. What systems are in place to reprimand delegates who repeatedly fail to consider all of the evidence?

7. How is an apology for an administrative error enough compensation for the distress caused?

THE FUNCTIONAL CAPACITY FRAMEWORK

PART 2:

“This may seem obvious but many of the current efforts to improve assessment accuracy actually reduce the effectiveness of assessment by substituting technique for judgment, emphasizing details over general principles, and applying clinical measures to functional problems.” (Siebert, 2006, p.52)

For ten years, I have worked as an Occupational Therapist with a population group who have had significant difficulty gaining access to the NDIS due to reasons outlined in Part 1. The level of complexity of these conditions is extremely significant and requires in-depth knowledge and understanding of the condition to fully appreciate the needs of the individual.

I have invested countless hours and significant finances in professional education to ensure my proficiency in this area of practice. I have spent time in the United States, upskilling myself and learning from centres of clinical excellence. I sit on an international working group of highly respected professionals relating to these conditions, as well as provide education, supervision and consultation to clients and professionals relating to these conditions.

The ‘Assessment of Functional Capacity Framework’ (NDIS, 2020a) as released in August 2020, poses a significant risk to the group of individuals in the Australian population who live with rare and complex disorders. The proposed framework, where independent assessors are paid to assess the functional capacity of an individual who they have never met, with limited information about them, their condition and their needs, and in a 1-4 hour period of time, is a devastating imposition to the lives of people with disabilities.

These people have fought long and hard to be diagnosed with their rare conditions. The complexity of their condition, which baffles most medical specialists has meant that these individuals have not only had lengthy, drawn out diagnostic processes, but traumatic experiences at the hands of inadequately prepared medical and health professionals. Asking these people to submit themselves to additional inadequately prepared, ‘objective’ health professionals for an overview assessment of their function, with no understanding of the complexity of the condition, is to ask them to willingly consent to further trauma.

a. A FLAWED FOUNDATION

I have many concerns about the design and implementation of the Assessment of Functional Capacity for NDIS – Development and Framework (NDIS, 2020a).

Occupational Therapists pride themselves on their ability to apply their clinical skills and knowledge to the assessment of people with varying disabilities. We have extensive experience in assessment processes.

While talking about United States home health agencies, Siebert (2006) points out,

“The most powerful tools available for effective functional assessment are already available within each home health agency. These tools are the expertise, the experience, and the reasoning of the agency’s clinicians, particularly their experience and expertise working with patients and families in the home.” (p.52)

The Framework (2020a) removes expertise, experience and clinical reasoning from the process of determining someone’s functional capacity and needs. It appears that the academics consulted about this framework do not realise that you cannot provide an effective assessment of human function without tapping into expertise, experience and clinical reasoning. Without these you have an administrator, not a clinician.

As it stands, the Independent Assessor model is set to take away:

1. Extensive experience

2. Expertise

3. Clinical reasoning

When these three key ingredients are taken away, you are left with substandard assessments being carried out on vulnerable individuals, who will likely be traumatised by the process, for absolutely no gain.

Experience

An OT with extensive experience will have that experience in limited areas of practice. Unless you employ therapists from rural areas who are more generalist out of necessity of location (and take them away from rural communities who need them), there are very few allied health professionals who are proficient in assessment of all people with all disabilities.

It takes experience to be able to assess, collate, draw conclusions and make recommendations from assessments, and their data. I draw your attention to the following from Siebert (2006) on Functional Assessment: Process and Product:

“Expert clinicians operate efficiently and effectively using mental models and recognizing patterns. This means understanding a patient situation as a coherent whole.

With experience, clinicians develop scripts—anticipated flows of events that may occur for a given situation or pattern. Given “X typical situation,” a clinician may anticipate several scripts, depending on factors such as the presence or absence of family support, the presence of other health problems, and adequate financial support.

Experienced clinicians then look for cues indicating which script may apply. These mental models are based in part on formal education and training but also are influenced strongly by the personal experience of the clinician. As practitioners develop these mental models they become more adept at searching for and acquiring information, developing patterns, formulating problems, and identifying courses of action to address the problems identified. In contrast, novice clinicians tend to focus on specifics. Novices do not operate as efficiently or effectively because their attention is consumed with details; they do not have the shorthand of the patterns and scripts (Schell, 2004).

One has to see a client as a coherent whole to fully assess their function. To do that, we have to see the person, understand their condition, their environment, their roles and occupations (tasks), their current supports, as well as their needs both now and in the future.

Experienced clinicians rely on mental models, for example, “when I see X presentation, I know to ask questions relating to A+B+C.” Experienced clinicians know which types of questions they need to ask to gain important information and insight from the person in front of them (or their carer). Experienced clinicians use clinical reasoning, mental models and scripts, without even thinking about it, because after years of experience, it is second nature. Novice clinicians do not have these same skills.

Expertise

Expertise comes from experience and honing of skills. One cannot have expertise in all areas; at best one could be a paediatric, adult, or geriatric therapist with knowledge across that particular area of the lifespan. Or they could have expertise in how a particular condition effects people across the lifespan e.g. stroke. However, you will be hard-pressed to find someone who has expertise in spinal cord injuries, mental health, neurological conditions, genetic disorders, and autism in children, adults and geriatrics. It does not work that way.

It is the very reason why The Occupational Therapy Board of Australia requires us to implement a Substantial Change in Scope of Practice Plan if we are planning to switch from an area of practice that significantly deviates from our current experience. Relevant training needs to be completed and a professional development plan detailing specific steps to ensure competency be submitted to The Board before commencing practice in the new

scope of practice.

(Faq- Recency Of Practice Registration Standard, occupational Therapy Board Of Australia, 2019)

Clinical Reasoning

One cannot provide sound clinical reasoning without all the facts; nor can one gain all the facts in 1-4 hours. Clinical reasoning requires experience, expertise, knowledge and skills. It requires having seen similar presentations over and over again, and knowing how to apply what you do know, to what you do not know. It requires extrapolation of information, collaboration and investigative skills. Clinical reasoning goes far beyond check boxes and standardised assessments.

It appears that the ndia plan to remove any clinical reasoning from the assessment process, and simply require an allied health professional to ask pre-determined questions which cannot fully probe the depth of experience of someone with a condition they know nothing about. This is not an assessment. This is not clinical; it is administrative.

An experienced clinician should be the only one to undertake an assessment of an individual’s function. Based on the information provided to date, the ndia intends to have assessors complete a suite of assessments, and then decisions and recommendations will be made by an ndia “delegate”. These assessments will inform access and plan funding, as per minister robert’s address:

   "Independent assessments would deliver a simpler, faster and fairer approach for

determining a person’s eligibility right through to developing more flexible and equitable support packages“. (NDIS, 2020b, minister robert, media release, 28/8/2020)

it is extremely concerning that ndia delegates with decision-making capacity are not required to be AHPRA qualified health professionals.

people in decision-making roles within the NDIA are not qualified to make the decisions they are making. They are also not qualified to interpret the data provided by any type of clinical assessment, let alone make recommendations for funding based on this data, for someone they have never met. The way it stands, people with no qualifications are going to be determining the future of someone with a disability.

if that is not concerning enough, eliminating or limiting the consideration of the treating therapists’ clinical reasoning in that decision-making process poses a grave danger to people with complex disabilities. It is part of my every day professional practice when writing reports for both access requests and reviews, to make recommendations for supports for future NDIS plans based on my clinical reasoning, my knowledge of the client and their needs, my duty of care and ethical responsibility not to prescribe or recommend that which is not reasonable or necessary.

Yet time and again, someone with no qualifications, can ignore the recommendations of AHPRA qualified professionals and decide whether or not someone meets access, and determine the amount of funding they receive for their needs.

Taking away the NDIA delegate’s access to treating therapists’ reports in the decision- making process, by assuming the Independent Assessment can replace this, could place the NDIA in a situation where significant negative outcomes follow.

If the NDIA were to continue with this deeply flawed framework, it is my professional opinion, that:

• Clinical reasoning cannot be removed from the process or submitted reports ignored.
• Assessors should have a minimum of 10 years of experience working in the community performing assessments and intervention planning for people with disabilities. Novice assessors are a liability in this context and will lead to a significant increase in cases brought before the AAT, not to mention a waste of time & money.
• Assessors should have the flexibility to ask in-depth questions of the participant regarding their diagnosis and its impacts on their lives.
• It should be mandated that an assessor attended professional development on that particular condition before being allowed to assess an individual with that diagnosis (to give at least a basic understanding and launching point for their additional questions).

If the NDIA are going to submit someone to an assessment against their will, they at least have the duty to ensure the assessor is qualified, experienced, and will not do harm to the applicant or participant. Immediate follow up needs to be factored in to the assessment process, giving the applicant/participant access to mental health supports immediately after the assessment.

Please know that this will be against their will. Most people with disabilities, who I have spoken with, would not willingly subject themselves to an assessment. And those that would, do it for this reason: they are scared to lose their funding or not be granted access at all. They know they cannot survive in society without funding, and there are no other options outside of the NDIS.

This scheme and the proposed assessments have removed choice from people with disabilities who are unable to survive without government assistance. Sadly, there will be people who will undergo assessments and be psychologically damaged and traumatised by the system that is meant to be helping and protecting them.

Lack of Consultation

The NDIA attempts to placate the public by acknowledging that ‘change can create uncertainty’, and implies that prior warning excuses the changes they are going to make,

“‘We know that with change there can be uncertainty – that’s why we have begun talking about these changes well in advance of rolling them out, so that we can continue gathering feedback, answer questions and address any concerns,’ (NDIS, 2020c, Mr Hoffman, Media Release, 7 September 2020)

“We know independent assessments are a big change for people applying to access the NDIS, and for existing participants. And we understand that change can create uncertainty.

That’s why the Minister for the NDIS, Stuart Robert, has announced independent assessments will be introduced in 2021 now. We want to give applicants to the NDIS, existing participants and the disability community time to prepare for the introduction of independent assessments.“ (NDIS, 2020d, Independent Assessment Q and A, 7 September 2020)

As professionals, we will not simply be placated by “adequate notice.” We require extensive, sound reasoning before we are going to support any changes, and to date there is no sound reasoning to be found. We are not arguing or fighting against this for arguments sake. People’s lives are on the line.

As Siebert (2006) again points out,

“A reservoir of clinician experience and an inventory of mental models exist in every agency. This knowledge is often tacit, available to the individual clinician, but not articulated or recognized. At times, it becomes evident when new procedures are introduced and clinicians critique a new tool or technique as unworkable or unnecessary. Usually, these comments are dismissed as attitude or a resistance to change but more careful probing may reveal something else: unspoken knowledge—patterns and scripts—that may provide valuable insights regarding the utility or applicability of the new procedures.” (p.52)

If the National Disability Insurance Agency consulted with those who are working on the ground, to discover our insights regarding the utility of the new model, they would already have been aware of the significant flaws in the model they have proposed and submissions such as these would not be required.

Despite Mr Hoffman claiming:

“the introduction of independent assessments has been part of ongoing discussion
regarding improvements to the NDIS experience, including consultation with more

than 40 peak health and disability bodies from across the sector, with the release of the framework the next important step in transparent communication about the new approach,” (NDIS, 2020c)

                                                                Submission: Occupational Therapist    Page  15

b. CHOICE OF PROFESSIONALS

The Assessment of Functional Capacity Framework (NDIS, 2020a) implies a functional capacity assessment (FCA) can be carried out by any one of these professions: Occupational Therapy; Physiotherapy; Psychology; Rehabilitation Counselling; Social Work and Speech Pathology. While news has filtered through that the NDIA have changed the name of this model to Independent Assessment after lobbying by OT Australia, the essence of the model appears unchanged.

Given performance of Functional Capacity Assessments (or Evaluations as you will find in the literature) are part of the core scope of practice of Occupational Therapists, it is misinformed of the NDIA to believe that psychologists, social workers or speech pathologists have the clinical skills and knowledge to carry out such assessments.

The Framework (NDIS, 2020a) is in no way considered an appropriate model of assessment of individual’s functional capacity, however, if the NDIA were to continue with the fundamentally flawed framework they have outlined, they would need to change which professions are allowed to carry out the independent assessment, namely, Occupational Therapy. Given the high demand for OT’s, there could be some scope for Physiotherapy to also be included for some disabilities.

No other professions have the practical training and clinical insight to successfully and safely assess the physical functioning of people with disabilities. Therefore, if the framework were to be rolled out in its proposed form, psychologists, social workers and speech pathologists should only be allowed to assess an individual with a clear “speech” or “psychosocial” disability. Where there is any overflow into difficulties with physical functioning, an occupational therapist or physiotherapist should be engaged.

d. CHOICE OF ASSESSMENT TOOLS

Occupational Therapists know that there is no one size fits all approach to assessment of people with disabilities. I am extremely sceptical that the suite of assessment tools the NDIA have chosen will be sensitive enough to discriminate the individual nuances of each disability presentation, specifically those conditions which are poorly understood, present differently in each individual and are already often rejected by the NDIA due to lack of understanding on the part of delegates.

As clinicians we carefully select the assessment tools used based on a number of factors, only one of which is the NDIA’s willingness to accept the data generated from the assessment. We carefully consider the individual in front of us; the person & their environment and the goal of the assessment.

If the assessment were to be a true assessment of functional capacity, the assessor would see the applicant face-to-face, measure actual functional aspects such as range of motion, strength, and endurance. Video call does not constitute face-to-face in this context.

What has been proposed can only be described as a screening tool, not an assessment. Given the claims that the assessor will not be providing a written report, and merely uploading documents from the suite of assessments, and the NDIA delegate will make decisions around access and plan funding, it should be named an access screen. This is not OT. This is not Physiotherapy. This is administration.

a) they are unlikely to be the most relevant assessments for the client; and

b) the qualitative information collected during an assessment will be lost and inaccessible to the clinician.

We will have no alternative but to repeat the assessment process for ourselves.

No experienced clinician upholding professional ethics will undertake intervention without performing their own assessment of the client in front of them. This applies across all allied health professions. An actual, useful assessment will still need to be funded by the NDIS, thereby doubling the costs to the NDIA, not reducing them.

f. NDIA’S DESIRE TO COMPARE

It has become evident through the Framework (NDIS, 2020a) document that the NDIA have an intention to compare people with disabilities.

“It also means that it is extremely challenging for the NDIA to draw any comparisons regarding functional capacity between individuals” (NDIS, 2020a, p.7).

It is my understanding that people either do, or do not, meet the access requirements for entry into the NDIS. There is no reason at all to compare the severity of the disability experienced by individuals. Plan funding does not require comparison. It should be assessed against standards, with flexibility in response to individual needs, not assessed against Client X or Y who “has a worse level of disability” than other people with a disability. The NDIA should be determining the individual’s unique needs and providing funding for what is required, within the framework of what is considered reasonable and necessary.

People who have been denied access from the NDIS have already expressed feelings of not being “disabled enough” or their disability not being “as ‘bad’ as someone else” meaning they are not deserving of access to support, or have what others have: “the same right as other members of Australian society to realise their potential for physical, social, emotional and intellectual development.”

One denied applicant reported: “I was left feeling: “Other people deserve more support than I do”. It made me doubt everything, all of my struggles, symptoms and thoughts. It also made me feel unworthy of support and that many other people deserve much more support than I do”

g. DISCREDITING OF THE PROFESSION

The immediate fallout of the release of information from the NDIA regarding independent assessments has been substantial. The allied health professions have been discredited by the NDIA in multiple ways. One way is the NDIA’s lack of explanation and willingness to answer the questions of participants.

For example, a post on the NDIA Facebook Page (NDIA, 2020) in an attempt to answer

questions posed said this:

“Why should I have to tell my story again, and to a stranger? I already have terapists who know my needs. Why can’t the NDIA trust their reports and assessments?

Functional assessments have always been part of the NDIS process, however current arrangements can be complex, costly and inconsistent.

Participants have reported they have spent thousands of dollars chasing assessments to show their functional capacity.

By making the independent assessments free, we are removing the financial burden of evidence gathering, to access and use the NDIS, and making sure participants have the right assessments to assist in the planning or review process.

The NDIA estimates this will save people with disability collectively between $130 million and $170 million per year based on the cost of assessments.

Independent assessments mean that new and existing participants have the same opportunity to access an internationally recognised, evidence-based and consistent assessment, which provides an up-to-date and complete assessment of their functional capacity.“

Instead of addressing the questions posed, and therefore the concerns of people with disabilities, the NDIA simply justified their plan. They did not answer the questions or alleviate the concerns. In addition, they failed to address the question of trust of therapists who already provide them services.

One person commented “Are they saying the current allied health professionals we use are not professional and/or qualified? Why would they be questioning their abilities and competence?”

Sympathy bias Regarding ‘sympathy bias,’ a construct claimed to be an issue in current reporting methods:

“Currently, health professionals who have been supporting an individual are often placed in a difficult position when asked to undertake an assessment that relates to a persons eligibility for NDIS. The potential for the over-stating of an individuals needs by a health professional who has known a person for a period of time even if it is unintentional poses a risk for both equity and sustainability of resources.” (NDIS, 2020a, p.28)

Submission: Occupational Therapist Page 19

Direct from the Productivity Commission’s Disability Care and Support Report (2011): “Assessors should also be independent of the person being assessed to reduce the potential for ‘sympathy’ bias. This means that health professionals — GPs and others — with past treatment and support responsibilities for the person, would not undertake assessments…

          Participants expressed some concerns about the independence of assessors,
          preferring to have someone with knowledge of the individual undertaking
         the assessment. … in my view, taking the assessment process too far away
        from experts who have the best view of the needs of the person who is
            living with the disability.  I think it would be wrong to completely remove
           treating doctors from the assessment process.  I would suggest that any
         assessment should be made taking careful consideration of the expert advice
          provided by any treating doctors." (Paul Petrie-Repar, sub. DR988, p.4)

Not only have the NDIA ignored the voices of people with disabilities regarding who they want to interact with for their assessments, claiming that health professionals are prone to sympathy bias discredits the years of training we have in observation and objectivity. While bias is part of the human condition, to attack the credibility of health professionals by claiming we cannot be objective or independent, is to push their own agenda: to decrease spending.

The NDIA need to examine the recommendations made by allied health professionals in the context of a full functional assessment and transparently show how & why they ignore recommendations and decide on arbitrary funding amounts.

         For example, in the case of Client 2, previously mentioned:

        The plan funding provided to the client for her first plan did not even cover
         the costs of the crucial components of assessment that were outlined as part
          of the functional assessment provided. It was grossly underfunded, such that
         the  client  would  have  to  choose  between  assessments  for home
           modifications, wheelchair prescription, orthoses prescription and Level 3/4
          AT.

           In addition, there was no allocation of funding for maintenance therapies
          that were explicitly requested both by specialists, allied health x 2 and the
            client as part of her plan goals. I recently sent a review letter to the planner,
          requesting that both her assessment and maintenance therapy needs be
        funded in full. Her plan was short by $24,000.

This is not sympathy bias. This is fact. Without a home modification assessment, that client is unable to access her home with the wheelchair she now needs prescribed. There is nothing sympathetic about that recommendation. The client cannot walk unaided without serious risk; the client needs a wheelchair; the client therefore needs modifications to their house. This is objective; it is reported fact. This is reasonable and necessary.

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Her physiotherapy and occupational therapy are also required, not a luxury.

If she is to maintain her limited independence and prevent worsening to the point of requiring full time care, she requires therapies to help her; these were not funded. Without these therapies, I know she will likely end up being unable to weight bear at all, requiring full time care, including ceiling hoists, automated home systems and an accessible vehicle. I know this because I know the typical trajectory of conditions such as hers, because I have experience, expertise and advanced clinical reasoning. How is this sympathy bias?

The situation of higher future support needs could be prevented by allocating the funding required to enable her to access the therapies she needs. It is that simple. We know our clients, their conditions, the environments they function in and the predicted trajectories of their conditions. We know what they need in order to prevent or slow decline. Why do NDIA Planners and LACs refuse to listen?

Neglecting expert opinion

An area of great concern is that the independent assessor framework neglects the expert opinion of doctors and niche skills of allied health professionals. There are very few allied health professionals with the depth of knowledge or skills required to provide appropriate assessments for rare disorders.

No “independent assessor” will have the depth of knowledge on these particular conditions, and therefore, people with these conditions will be subjected to sub-optimal assessments by less than knowledgeable assessors. They will receive plans that do not meet their needs, because their needs were not adequately identified. The recommendations will be inaccurate and unhelpful; harmful even.

For people with these less understood conditions to be on a more equal footing with fairly well understood conditions like Cerebral Palsy, Multiple Sclerosis, or Spinal Cord injuries, they will require a consultation with someone like myself, to add to their access paperwork (assuming it will be read). I know for a fact that people are being denied access based on lack of understanding of their rare condition, and the reports we provide help to educate the delegate on the condition (once we ensure they read it!). The individual will still have to pay for our input to help educate the delegate reading their application. This should not have to come out of the applicant’s own pocket.

It would make far more sense for the NDIS to allow clinicians to bill the NDIA for the pre-access assessments we do for people in the process of applying. That way the NDIA would get specialised knowledge from those who know what they are doing and talking about.

Overestimation/Overstating of needs

Regarding claims in the Framework (NDIS, 2020a) document about overestimation of needs (NDIS, 2020a, p. 159), I genuinely do not know of an Occupational Therapist who would risk their career and reputation by deliberately over-stating support needs. This is part of our Code of Ethics, and also the rules of being registered with AHPRA. Additionally, very few of

us have the capacity to see people for more therapy than they need, so why would we do this? There is no shortage of clients to see!

It is important to emphasise that allied health recommendations are rarely accepted in full anyway, instead being overruled by untrained LAC’s and Planners. Perhaps if the NDIA started giving people with disabilities what they required, there would be less over- reaching for resources by the small few that might be doing this?

You cannot run the NDIS without us Many Occupational Therapists feel like our profession is being dragged through the dirt by the NDIA. It is a bold move by the NDIA, considering the scheme itself cannot run effectively without our input. Without occupational therapists, participants would be left:

• without intervention to improve their capacity for activities of daily living;
• with no assistive technology prescription - no wheelchairs, beds, access to hoists, vehicle modifications, home modifications etc.

I believe allied health professionals deserve a public apology from the NDIA CEO and Minister Robert and it needs to be on the record that participants can trust their allied health professionals as much as ever.

h. BARRIERS CREATED

The NDIA claims: “An independent assessment of functional capacity, as part of an uncomplicated and clear access pathway that is provided at no cost to the individual, will help to minimise the impact of barriers for people trying to access the Scheme” (NDIS, 2020a, p.29)

  “Changes to the assessment process should seek to level the playing field so that

financial, cultural, social, education and literacy factors do not contribute to delays or barriers to accessing the Scheme”(NDIS 2020a, p.9)

The NDIA does not acknowledge the barriers it is creating with the proposed introduction of independent assessments. These barriers include, but are not limited to:

• Discrimination – people from minority groups often choose their therapists based on word of mouth or knowledge of their stance on important issues including gender diversity, cultural awareness and sensitivities, and religious beliefs. They do this to try and avoid discrimination and abuse at the hands of those who think, believe and act differently to them.

• Communication – the NDIA are known for employing delegates who lack appropriate communication methods and skills in interacting with diverse populations, including those with communication disorders, deafness, Autism, and

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trauma.

Interactions with NDIA staff are often stressful events for people with a range of disabilities.

• Trauma – those who have experienced trauma at the hands of medical or health professionals will have an extremely difficult time submitting themselves to an independent assessment. Those who have been through the process of an FCA with an “objective” assessor through other schemes (eg. Workers Compensation, TAC, Centrelink DSP assessment) could be re-traumatised. Many people’s experiences of these assessments have been traumatic, degrading, and invalidating.

• Power dynamics – when you place a vulnerable person with a disability in a position where they have no choice but to succumb to an independent assessment, you are initiating a power imbalance. This places the government (NDIA) in a place of power over the lives of people with disability. Many people have trauma from such previous interactions, and many will be psychologically damaged by being forced into these dynamics.

• Governmental control – the government has control over many aspects of people with disability’s lives, from finances for those on pensions through to housing, healthcare and disability support. These assessments add to the burden of contact with government agencies and what people describe as the “interrogation” and “examination” of every aspect of their lives.

It is also taking away choice and control, the slogan of the NDIS.

How can the NDIA claim to be about “choice and control” for people with disabilities? Under the new model, people with disabilities will have: 1. No choice about whether they have an independent assessment or not 2. No choice about who provides that independent assessment 3. No control over when the NDIA can force a review of someone’s plan or re-assess their access

This is not choice. This is not control. This is coercion.

AAT CASES WILL INCREASE

It is a common occurrence for people with rare disorders to have to confront the NDIA at the AAT in order to appeal the decision on their access to the NDIS. This process is tedious, expensive, traumatic, and in many cases unwarranted.

Many cases that I have been involved with (on the side of the applicant) could have been prevented from getting to the AAT by having NDIA delegates with health qualifications in positions of decision-making power. It could also have been eliminated by picking up the phone and speaking to the doctors and health professionals who actually know the applicant or participant.

Mental Health Funding

The introduction of the independent assessment framework will, without a doubt, cause increased stress, distress and mental ill health in people who are only just “surviving” at present. It is predicted that funding allocation within the NDIS will need to increase substantially in order to support the mental health needs of participants who have been thrust into an ongoing assessment process they were assured would not happen.

As one participant has said “What is the point of proving you have a permanent disability that will require lifelong supports from the NDIA, if the NDIA are going to continually reassess your suitability for the scheme?”

People with disabilities are already living in fear of the proposed changes and what it will mean for them. They are living scared of the day that they will be reassessed as not meeting the criteria and being thrown “back on the street” so to speak, to fend for themselves. Given there are little-to-no state-based services left after they were subsumed into the NDIS, that is a terrifying thought for many and almost unbearable for others.

The cost of the independent assessments will be far greater than the monetary value placed on the assessment itself. The process is likely to increase reliance on acute mental health services in our hospital systems, place people at greater risk of negative outcomes, including higher support needs, suicide risk, suicide attempts and suicide deaths, self-harm, and drug and alcohol abuse.

There must be a duty of care by the NDIA to ensure that any trauma or worsening of mental health of any participant or applicant, is minimised and appropriate treatment and/or support is provided by the NDIS.

Particular client groups are at higher risk of adverse effects of the independent assessment model, but it is not limited to only these groups. Those at high risk include people with:

• Psychosocial disabilities
• Autism
• Rare and complex conditions

The big question here is: Are the savings that the NDIA proposes to make through implementing the independent assessment framework worth the negative impact on the lives of people with disability?

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Where do you draw the line? When is money more important than the wellbeing of the most vulnerable people in our community?

k. WORKFORCE ISSUES

A big question remains regarding where the independent assessors will come from, with such a substantial shortage of allied health professionals in the Australian workforce. Waiting lists at most occupational therapy clinics are long or are not accepting new referrals at all. Taking clinicians away from face to face work with clients and putting them in what is essentially an administrative role will worsen the wait times and access to services.

Given the history of government tenders, and the fact that the majority of occupational terapists were not aware that the Independent Assessor Panel roles were even out for tender (so therefore could not apply), there are serious concerns about who will make up the Independent Assessment Panel.

We know from experience that multinational companies are the most likely to meet the requirements for government tenders; that they often employ new graduates or early- career professionals; and usually have an occupational rehabilitation background which has nothing to do with the NDIS, except for the insurance focus. This is not appropriate when people’s entire disability funding is on the line.

There are also significant concerns for the impact on small business, in particular sole practitioners who are unable to meet the requirements of government tenders, such as these. Small businesses and sole practitioners will be adversely affected by the independent assessment framework, as a significant amount of business has been derived from assessments to support access requests, as well as assessments for plan reviews. The Government does not seem to be concerned about taking away from small business and handing the work to larger, national or multi-national companies.

PART 3: SUGGESTIONS

1. ACCESS REQUESTS: NDIA delegates should have their work checked by a supervisor who is a health care professional before sending letters denying access to applicants

• A checklist should be implemented to make sure that all documentation submitted is read prior to a decision being made. A copy of this checklist should be supplied to the applicant with their letter denying their access.
• Google is not an appropriate research method for delegates to assess the permanency of impairment! (This has actually happened and been revealed to applicants upon questioning, “Google said X”).

2. Instead of an Independent Assessor providing assessments, the NDIA could provide a template for access assessments to all medical and allied health professionals to complete. We have been asking for templates for years, but the NDIA have not been forthcoming.

3. Allow allied health professionals who are already providing assessments for access, and will continue to do so if their clients are going to have any chance of accessing the NDIS, with the option to bill the NDIA for the assessment.

• This achieves the NDIA goal of creating assessments at no cost to the individual
• A clinician with skills and knowledge of their particular disability will assess the applicant.
• This also eliminates pressure on the workforce, which is already struggling and cannot afford for allied health professionals to be removed from face-to-face clinical work in preference for administrative roles.
• It also ensures some sustainability of small businesses and sole practitioners who rely on assessment income to stay operating.

4. If the Independent Assessment framework does go ahead:

• Only allow Occupational Therapists and Physiotherapists to carry out assessments involving reduced physical functioning. Only OTs can complete a holistic Functional Capacity Assessment encompassing all 6 domains.

• Post-screening support must be implemented and made available to participants/applicants immediately – this means access to a Psychologist, Social Work or Accredited Mental Health Occupational Therapist. ! This process will traumatise already vulnerable people ! Self-harm and suicide attempts may increase in reaction to unsatisfactory interactions with independent assessors and must be mitigated against at all costs. This has to be an issue of duty of care.

CONCLUDING STATEMENTS

The “Assessment of Functional Capacity for NDIS – Development and Framework” contains details of a process of assessment of NDS applicants and participants which is poorly designed, damaging to people with disabilities and lacking in professional consultation. It also appears to have been released without proper consultation with people with disabilities.

It is my opinion that independent assessors whose pay cheque comes from the NDIA (via tenders) cannot be truly independent of the NDIA agenda to minimise spending. The implication that clinicians have “sympathy bias”, and that the NDIA does not have its own biases, is insulting to the health professionals of Australia and an apology should be provided by the NDIA.

If the NDIA would like Independent Assessments (of functional capacity) performed, they should only be performed by Occupational Therapists, as OT’s are uniquely qualified to conduct assessments to determine a client’s ability to effectively and safely carry out activities and tasks they want and need to do, and to determine their ability to participate in productive occupations, and social and community activities. This is an Occupational Therapist’s work. Physiotherapists can assess physical function but often without the holistic perspective of an Occupational Therapist.

There needs to be serious consideration given to the psychological damage to people with disabilities that will come with the use of independent assessors, not the least of which includes trauma, mental ill health, increased reliance on acute mental health services, and increased suicide risk. Inappropriate assessment will lead to inappropriate planning decisions causing negative outcomes for people with disability.

A suggested approach would be for the NDIA to create templates for assessment of function that clinicians are required to use to report on functional impacts of applicants and participants. Training in the use of this assessment tool is not an unreasonable expectation. Experienced clinicians need to be involved in the assessment and recommendation of supports for people with all disabilities, but particularly those with rare and complex disabilities. This would continue to provide work for small businesses who are vital providers within the NDIS framework, and who are at risk of closure with the proposed changes.

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References:

Commonwealth of Australia. (2013). National Disability Insurance Scheme Act 2013. (20) Canberra

National Disability Insurance Agency (Facebook Page) hypertext transfer protocol://www.facebook.com/NDISAus/photos/a.193015734192610/1567881086706061 [Accessed 20 Sept. 2020]

National Disability Insurance Scheme (2020a): Assessment of Functional Capacity for NDIS – development and framework. Downloaded from: hypertext transfer protocol://www.ndis.gov.au/participants/independent-assessments/independent-assessment-ramework [Accessed 7 Sept. 2020]

National Disability Insurance Scheme (2020b): Landmark reforms to deliver on the promise of australia’s ndis. hypertext transfer protocol://www.ndis.gov.au/news/5207-landmark-reforms-deliver- promise-australias-ndis [Accessed 20 sept. 2020]

National Disability Insurance Scheme (2020c): NDIA Release New Functional Capacity Framework: hypertext transfer protocol://www.ndis.gov.au/news/5260-ndia-releases-new-functional-capacity- system [Accessed 20 sept. 2020]

National Disability Insurance Scheme (2020d): Independent Assessment Q & A hypertext transfer protocol://www.ndis.gov.au/participants/independent-assessments/independent-assessment- quand [Accessed 20 sept. 2020]

National Disability Insurance Scheme (2020e): The independent assessment process hypertext transfer protocol://www.ndis.gov.au/participants/independent-assessments/independent-assessment- process [Accessed 20 sept. 2020]

Occupational Therapy Board of Australia (2019): FAQ – Recency of Practice Standard, hypertext transfer protocol://www.occupationaltherapyboard.gov.au/Codes-Guidelines/FAQ/ROP.aspx

Seibert, C. (2006). Functional Assessment: Process and Product. Home Health Care Management & Practice, 41(1) 51-57

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