SUBMISSION TO THE INQUIRY INTO NDIS INDEPENDENT ASSESSMENTS
Short Introduction and Background
My name is and I am a participant with the NDIS (since 2018). I have lived experience of a severe physical disability caused by contracting polio as an infant, and currently experience further loss of capacity with the late effects of polio, or what is known as Post-Polio Syndrome, diagnosed in 2002.
Being eligible for, and accepted onto NDIS in 2018 has been life-changing. I have been very fortunate with new supports, assistive technology, and allied health therapies. All of which I am most grateful for, and which has made a significant difference to my quality of life in the few years since becoming a participant. And having supports for the first time in my life as a person with disability.
I share concerns about the introduction of Independent Assessments like other Deaf and disabled people. My reasons being that I do not believe that the “tools” or questionnaires that have been selected to undertake these assessments are appropriate or able to capture the complexity of the life experiences and the needs of a person with disability.
Recently I volunteered to take part in an Independent Assessment Pilot1, and regret to say that my worst fears were realised and that the tests and questionnaires were as I expected. After completing the 3 hours of questions I do not believe that the information collected would have provided a clear picture of how I live with disability and the supports I need to achieve the simplest of life goals – to live independently and safely at home.
My submission is based upon that recent experience and is outlined under several of the Inquiry Terms of Reference. I aim to challenge the assumption that the selected tools/questionnaires are appropriate for the intended purpose of fair and equitable evaluation of a person with disability’s capacity, or more importantly, their support needs.
Therefore, I strongly believe that the proposed reforms, particularly the introduction of the Independent Assessments, will be deleterious to the benefits to the ground-breaking NDIS, and certainly will not deliver on the statement that they “… are necessary to deliver a simpler, faster, fairer and more flexible NDIS will benefit all Australians”2
Key Points of This Submission
I wish to address Terms of Reference key points “d” and “e” that are to do with the selected tools and delivery of Independent Assessments for this inquiry:
Terms of Reference Point “d”
The independence, qualifications, training, expertise and quality assurance of assessors;
Comment:
The assessor who carried out my pilot Independent Assessment was a young male physiotherapist from a service provider organisation. Just prior to the interview I had some questions for him as to whether he had experience working with persons with post-polio syndrome. His response was that he had very little and it was not something he was very familiar with. This was not reassuring as to his expertise and qualifications in regard to my assessment.
Also, when conducting the WHODAS test, he gave me no warning about question D4.5 about “difficulties with sexual activities” and whether these were “none, mild, mild, moderate, severe, extreme or cannot do”. I was blindsided by this question and found it to be invasive, inappropriate and offensive, especially as there was no forewarning, nor was I given an option not to provide an answer - to a complete stranger carrying out a questionnaire. It was evident that the assessor’s professionalism and training to handle such a question was not high-level.
Recommendation: Question D4.5 in the WHODAS test be delivered with a warning and an option to not answer, or removed.
Terms of Reference “e”
The appropriateness of the assessment tools selected for use in independent assessments to determine plan funding;
Below is information on the selection of assessment tools available on the NDIS website. I have addressed the dot points below in the following pages.
Why these tools were selected3
We spoke to academics, allied health professionals and the disability community to understand the kinds of assessment tools that would work best for the NDIS.
As part of this process, we looked at and assessed more than 100 recognised and standardised tools for independent assessments. We needed to make sure the tools met certain criteria and they:
- were disability-neutral, so could be used across all disability-types;
- assessed function, rather than impairment;
- were questionnaire-based, to avoid capturing a person’s moment-in-time function, for example on a ‘good day’, or with an unfamiliar assessor;
- are accurate and reliable.
DOT POINT 1
- are disability-neutral, so can be used across disability types
This is not true; the Vinelands and the Lower Body Extremity Function Scale interview questionnaires are disability specific:
- The Vineland 3 Domain Version (Adaptive Behaviour Scales)
The Vineland AdaptiveBehaviourScales, Third Edition (Vineland-3) is an individually- administered measure of adaptive behaviour that is widely used to assess individuals with intellectual, developmental, and other disabilities. The three administration formats help describe each client’s profile from a different and important point of view: • The Interview Form (for ages 0–90+) uses the time-honoured Vineland semi-structured interview technique to elicit information about the examinee’s adaptive functioning from a parent or caregiver.4
Comment: For me, this test was not appropriate as I do not have the disabilities listed above, and, most upsettingly was completed without my input. Also, this part of the assessment took 40 minutes and as it did not apply to my circumstances was a considerable waste of time conducted “with a person who knows you well”.
Recommendation: That the Vineland test not be used with participants who do not have intellectual, developmental disabilities.
- The Lower Extremity Functional Scale
The Lower Extremity FunctionScale (LEFS) is a questionnaire containing 20 questions about a person’s ability to perform everyday tasks. The LEFS can be used by clinicians as ameasure of patients’ initial function, ongoing progress and outcome, as well as to set functional goals. The LEFS can be used to evaluate the functional impairment of a patient with adisorder of one or both lower extremities. It can be used to monitor the patient over time and toevaluate the effectiveness of an intervention.5
Comment: This test is most certainly specific to a person’s disability affecting lower limbs. So, the test is not disability neutral and is clearly specific to assess physical impairment, yet it is not broad enough to include weakness in the upper body.
Recommendation: That participants are informed that the tools may bedisability specific and as such, it is not relevant to a person’s disability, theymay opt not to complete that particular questionnaire.
4 https://www.pearsonassessments.com/store/usassessments/en/Store/Professional- Assessments/Behavior/Adaptive/Vineland-Adaptive-Behavior-Scales-%7C-Third-Edition/p/100001622.html 5 Source: Binkley JM, Stratford PW, Lott SA, Riddle DL. The Lower Extremity Functional Scale (LEFS): scale development, measurement properties, and clinical application. North American Orthopaedic Rehabilitation Research Network. Phys Ther. 1999 Apr;79(4):371-83.
**DOT POINT 2.
- assess function rather than impairment
Again, this is untrue – the tests and questionnaires I undertook were often specific as to whether or not a person could complete an activity or task and were graded into levels of difficulty.
For example, from the LEFS Test: “Today, do you or would you have any difficulty at all with:”\n Question 6: Squatting\
- Extreme difficulty or unable to perform activity
- Quite a bit of difficulty
- Moderate difficulty
- A little bit of difficulty
- No difficulty
Comment: It is quite clear from this question that impairment is being assessed. Participants with lower limb disabilities would not be able to “squat”. The LEFS test is a tool to determine “functional impairments” as stated in the above definition.
Additionally, and problematically, being based on the physical function of the lower limbs only, this test does not include upper body function. In my case I have very little capacity of both my right and left arms, and no ability to transfer from prone to sitting positions (abdomen weakness). So, this test would not provide a complete assessment of my physical function. Also, these types of questions cannot allow for “how” a person performs an activity or task.
For example, from the WHODAS Test: “In the past 30 days, how much difficulty did you have in:”\n(Self Care Section:) D3.1 Washing your whole body?\
- None
- Mild
- Moderate
- Severe
- Extreme or cannot do
Comment: I found the question difficult to answer because I have “severe” difficulties in performing this activity which are closer to “extreme”, but I still manage it every day independently. The question does not allow for the context of “how” you may have adapted a way to do this, like with certain equipment and other highly individualised methods developed by oneself to manage it, or that one is not safe to do so unless there is someone in the home at the time.
Recommendation: That there be included a more descriptive set of questions that provide information about —how a participant functions, when performing various tasks and what supports you use to do so.
DOT POINT 3.
- were questionnaire-based, to avoid capturing a person’s moment-in-time function, for example on a ‘good day’, or with an unfamiliar assessor;
The questionnaires/tools used for the assessment provide optional answers only, which may have no context for the participant’s individual capacities or situation. From my recent experience, to answer questions in this way was almost impossible. For a lot of the questions, I replied that I could not give an accurate response because there was no context provided. This meant that to make an answer I had to try and “fit” one of the options of graded answers.
For example, from the Lower Extremity Function Scale test – “Today, do you or would you have any difficulty at all with:”\n1. Any of your usual work, housework or school activities?\n\n- Extreme difficulty or unable to perform activity\n- Quite a bit of difficulty\n- Moderate difficulty\n- A little bit of difficulty\n- No difficulty\n Comment: Firstly, it was not clear why work, housework and school were all put together in one question. For me, there are different difficulties with these different activities (in my case work and housework, school was not relevant) which vary depending on what aspects of each activity one is attempting. What is not factored into the question - is the adjustments one has made in order to carry out the activity if possible. I have adapted my way of working so I can manage it and now do a lot of work on a computer. But other aspects of my work require a lot of support from a support worker or an assistant.
The same applies to housework, I can do a very limited range of tasks while other tasks are too difficult - like carrying washing, vacuuming, sweeping, cleaning the bathroom and toilet, washing the floor etc. I have adapted my life over time and reduced activities to suit my limited capacity and need for increased support. Consequently, it was extremely hard for me to answer the question accurately, especially as my response was supposed to cover both work and housework.
In the instance of the CHIEF questionnaire, all twelve questions relate to “the last twelve months”. And again, it was very difficult to answer these questions, as the content of the question is over-generalised and the participant must answer with the available options. Also, the “last twelve months” is arbitrary in the scheme of life- long permanent disabilities.
For example, Question 2: - “In the past 12 months how often has the natural environment - temperature, terrain, climate - made it difficult to do the things you want or need to do?” \nDaily\nWeekly
Monthly
Less than monthly Never Not Applicable
Comment: I had no real answer to this question because it depends upon so many factors that are not covered by the above options. The question is too generalised across several different environmental issues. Temperature, for one, may be extremely hot or cold, vary from week to week, by season etc, in which case it would be not a daily occurrence, so the option “daily” is irrelevant, “weekly” is the same, “monthly” how would a person remember? And “less than monthly” the same, and “never” is meaningless. If the weather is extreme a participant may not be able to do a range of activities, and in my case that is for certain, however I cannot say when this would be with these optional answers. What I could respond to would be a question like “Does the weather temperature affect your activities?” “Can you remember this happening in recent times?” and “How were you affected?”
In the preceding paragraph I have addressed the part of the question that related to “temperature” but not “terrain” which is a whole other subject and requires a different response. Just like with the temperature affecting “things you want or need to do” it is impossible to answer this with the “daily”, “weekly” “monthly” etc options, because it really depends on what is meant by “terrain” - rough ground, smooth paved areas, sloping gradients etc. Each of these requires a response not in terms of time but in terms of manageability. To put it together with temperature and climate and placing it in the timeframe options makes it impossible for the participant to answer.
Recommendation: That questionnaires be structured to discover —how such environmental issues affect a participant’s function or capacity. And to break down the questions so that a participant is not expected to try and “fit” the option answer to the question (a person may be affected by climate but not terrain so the two issues belong in different questions)
Lastly, and distressingly, was the surprise question included in the WHODAS questionnaire and that came with no warning: Question D4.5 (Getting Along with People Section): In the last 30 days did you have difficulties with - Sexual Activities?
- None
- Mild
- Moderate
- Severe
- Extreme or cannot do
Comment: As I mentioned earlier, this question came with no warning and was put to me as “intimacy” not “sexual activities”. Even so I was taken by surprise, especially as the assessor said “Intimacy, you know like kissing or hugging” which was offensive in two ways: 1) he did not explain clearly that it meant sexual activity, and this one could assume was due to his presumption that it might not apply to a participant with disability, and; 2) the question is invasive and out of context (yet
- again). Whilst I understand that collecting information about how a person with
- disability relates to others and how relationships may be affected by
- physical/emotional capacity, I feel very strongly that this question is highly
- charged, lacks context and is very inappropriate delivered by the assessor
- who is almost a complete stranger. I believe it has no place in the Independent
- Assessment, and is applicable only in therapeutic settings.
Recommendation: (see in earlier part of submission Terms of Reference Point “d”)
DOT POINT 4.
- are accurate and reliable.
Comment: Given the above concerns that I have outlined in the previous pages and from what I learned by participating in the second pilot for Independent Assessments, I cannot accept that the selected assessment tools can provide accurate and reliable information for a proper assessment of a person with disability’s function and capacity.
Questionnaires with optional answers have significant limitations when assessing how a person manages their life with disability. Disability is highly individualised, can be episodic, fluctuating, degenerative, acute and chronic, life-long or temporary. Over time, a person’s function may vary considerably, at different times of the year, or from one year to the next, a person’s disability may be affected by falls, injuries and other health issues. So, to capture all this information via the use of the NDIS selected tools could well be a very inaccurate way to collect information about participants’ individual situation. This may have dire negative outcomes for many people living with disability who require adequate supports and equipment.
Recommendation: That the selected standardised tools be reviewed to accommodate individual participants’ circumstances and experiences.
CONCLUSION AND SUMMARY OF RECOMMENDATIONS
In 2020 the NDIA undertook intensive research to: i. design a robust IA model that could have broader application for more participants/ prospective participants; ii. develop the IA model for comprehensive, holistic assessment based on the World Health Organization International Classification of Functioning, Health and Disability (ICF) and informed by the NDIS Act; and iii. identify critical components of the IA and refine the choice of tools to be tested.
This resulted in the creation of the Independent Assessment Framework (National Disability Insurance Scheme, 2020).6
Whatever lengthy consultative research processes have been carried by NDIA out to develop the Independent Assessment tools/questionnaires – from the point of view of a participant being assessed, it is not clear to me how accurate information about my particular circumstances could have been obtained.
I firmly believe that Independent Assessments should not be implemented as a “stand alone” method of assessment for NDIS participants. Otherwise, there is a serious risk of imprecise results that might lead to wrong conclusions. If this were to happen many people living with disability may be adversely affected and have their vital supports and needs unmet.
Recommendation: Question D4.5 in the WHODAS test be delivered with a warning and an option to not answer, or removed.
Recommendation: That the Vineland test not be used with participants who do not have intellectual, developmental disabilities.
Recommendation: That participants are informed that the tools may be disability specific and as such, if it is not relevant to a person’s disability, they may opt not to complete that particular questionnaire.
Recommendation: That there be included a more descriptive set of questions that provide information about how a participant functions when performing various tasks and what supports are used to do so.
Recommendation: That questionnaires be structured to discover how such issues (e.g.environmental) affect a participant’s function or capacity. And to break down the questions so that a participant is not expected to try and “fit” the option answer to the question (a person may be affected by climate but not terrain so the two issues belong in different questions).
Recommendation: That the selected standardised tools be reviewed to accommodate individual participants’ circumstances and experiences.
6 Independent Assessment: Selection of Assessment Tools Paper, pages 6-7, NDIS.