Submission of Comments

I wish to submit comments to your inquiry into the role of Independent Assessments in the NDIS.

Thanks for this opportunity.

I am an 86-yr old grandfather who, along with my wife, has cared for a mildly intellectually disabled 24-yr old granddaughter since 2003. My wife was diagnosed with dementia in 2012 and since 2018 has been in residential care.

For 2003 - 2018 we were involved with the SA welfare system (Guardianship of the Minister, Families SA, Disability SA) and since 2018 with NDIA.

My granddaughter has had a number of formalised assessments, organised by state welfare, much as in your toolkit, that place her capacity to function variously in low percentiles relative to her age peer group. These assessments were used diagnostically.

Accessing NDIS in 2018 changed her life dramatically for it provided me with the funds and ﬂexibility to evolve a program, centring on a psychologist, which improved her functional capabilities and has given me optimism for her future.

On the other hand, I have found the NDIS governance surprisingly unpredictable and my few interactions with NDIS planners unsatisfactory, which led me to temper my optimism and look “behind the words” offered about the new NDIS in an attempt to anticipate its reality in practice.

The NDIA deﬁnes an independent assessment (IA) as an assessment of a person’s functional capacity which will be used to inform decisions about eligibility for the NDIS and about funding a participant’s plan.

It is stating the obvious that the role of the IA in the “new” NDIS is pivotal, for the results of the IA determine the level of funding and the level of funding prescribes the plan that can be implemented.

So the IA warrants intense scrutiny, both the assessment per se and the assessor, and this opportunity is realised and welcomed with the engagement of a Senate Committee.

I will offer my comments under headings taken from the Terms of Reference (TOF)

TOF d. the independence, qualiﬁcations, training, expertise and quality

  assurance of assessors

From NDIS literature, the assessor “will be matched to you“
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   i. This is a most desirable aim. In my experience as a carer (since 2003 - of
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an intellectually disabled granddaughter, since 2012 - of a wife with dementia) I have found the greatest support by far in sharing experiences with carers facing closely related challenges. Thus, caring for for an intellectually disabled person not the same challenge as caring for an autistic person, caring for a person with dementia not the same challenge as caring for an aged person. To apply this principle of differentiation in assessment is behind the plea of advocates not to lump categories of disabled, such as

iii. What information will be used as a basis for matching? Does the

participant/carer have the right to access that information to conﬁrm its accuracy and adequacy?

From NDIS literature, “your assessor will not have access to information from your treating health practitioner”
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       i.   Will the assessor see any other information on the participant before the
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assessment?

          ii.  Is it correct therefore to say that the assessor commences the

assessment as a stranger to the participant, both personally and professionally?

          iii.  I feel compelled to admit a sense of disaster looming and this foreboding

was reinforced when I heard from an authoritative source that the CEO of interrupted the assessment of her autistic son and withdrawn him from your ﬁrst pilot study for she feared for his mental state if his conversation with the assessor continued.

TOF e. The appropriateness of the assessment tools selected for use in independent assessments to determine plan funding

  - Given for the moment the claim of a truly holistic outcome bestowed on the IA
by NDIA, which is a big "given" in the absence of any critical comment from

NDIA on value/limitation of each assessment tool, what mechanisms are to be used to translate the outcomes of the IAs into a draft budget?

          i.   It is likely that a computer is used, with the IA outcomes in different

domains digitised, weighted in some manner, summed, and the zone of the ﬁnal sum determining the size of the budget. But whatever mechanism is used it should be made available for public education and scrutiny.

           ii. Note, this draft budget is essentially set before a draft plan has been
     written by an NDIA delegate (qualiﬁcations? guidelines?) which in turn is

The NDIA literature states “the IA process is designed to capture the full impact of disabilities on functional capacities”, and often refers to IAs as being “holistic”.

i. However, as much as we all want this to be so, where in the NDIA literature is there presented a detailed argument to support this fundamental premise?

ii. Why in your terms of reference is there no invitation to examine the capacity of each element of the IA process itself to contribute to an holistic outcome for all disabilities?

iii. In the absence of any discussion on the holism of the assessment it is difﬁcult for the unqualiﬁed me to appreciate how the cause of reduced functional capacity (i.e. diagnosis) is not an essential element in any holistic assessment of a participant. Furthermore, the diagnosis and the facts underpinning it can inform any program to increase functional capacity and so enhance independence. For example, in our case, the impact of complex early trauma, rather than genetic, as the cause of our granddaughter’s mild intellectual ability, led to the signiﬁcant involvement of a psychologist, enabled by NDIS funding, with welcome improvements. To turn this into a question - how would the present IA capture a complex history of childhood trauma and indicate a continued role for the psychologist in further improving my granddaughter’s functional capacities?

TOF h. The circumstances in which a person may not be required to complete an independent assessment.

I propose that the annual reports to NDIA over the past two years from my granddaughter’s psychologist, based on some 100 hours essentially addressing her functional capacities, are a much more instructive “assessment” than that gained in a 3 hour (on average) conversation, questionnaire, task, multiple tests with a highly qualiﬁed, highly trained, health professional, who is meeting my granddaughter for the very ﬁrst time, both physically and conceptually. So my question - is it optimal for the success of the scheme to disregard information helpful for the assessor in assessing holistically? Can the assessor, for example

TOF k. The appropriateness of independent assessments for particular disability types, including psychosocial disability

The NDIS appears to address the disabled community as if it is a relatively homogeneous group we call the disabled whereas the group is quite diverse in the impact of their different disabilities. This came home to me recently at a disability workshop I attended where those in attendance, by chance, were mostly physically disabled and two of us were carers of intellectually disabled young adults. The workshop was two days/month for three months. It was excellent and I was particularly inspired by the resilience, creativity, tenacity, patience, humour of the disabled there, but struck by the advantage that they had in being able to communicate, express their needs and frustrations and basically to think. In contrast, the two intellectually disabled did not attend (necessarily for they would been out off their intellectual depth) but had their needs, frustrations and thinking expressed on their behalf by caring others. to come closer to home, the independent assessment as described is one size ﬁts all, dependent upon self-assessment, self-rating, self-expression, where the intellectually disabled participant would be challenged, particularly with a “stranger” assessing and with answers (if forthcoming) reﬂecting their own standards, not the universally accepted. it would helpful to know the advice on appropriateness of IA offered by the Intellectually Disabled Reference Group to the Independent Advisory Group setup by the NDIA to represent that constituency, which are 30.9% of the NDIS (Dec 2019).

my suggestion is to have an intellectually disabled participant interviewed (basic assessment ) empathetically by an appropriately qualiﬁed assessor and have a report, written by a treating health professional, be the basis for an assessing interview between that same assessor and that treating health professional. i mentioned earlier my respect for the annual reports to ndia written by my granddaughter’s psychologist in which, among other things, she directly and extensively addresses functional impacts and proposes types of support needed in three (communication, social interaction, learning) of the six life areas nominated for comment by the ndia.

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many pages given to reporting minutiae of the ﬁrst trial, under the heading “satisfaction with independent assessments”, only ﬁve lines of superﬁcial text were offered, followed by two plus four lines of very favourable comments from two participant representatives. Given the usual purpose for a trial and analysis, this offering was truly mickey mouse. - the survey questions and answers were not published. Judging by the ﬁve lines of the text , the questions seemed to be “do you think the assessor was professional?” “ do you think the assessor was familiar with your disability?” and seek simplistic yes/no answers. - of 513 participants only 126 responded in the survey. What is the actual statistical conﬁdence value for such a response? Why did 387 not reply? - while the two very positive comments are reassuring, potentially more instructive, given the purpose of the trial, would be discussion around any negative comments offered. Were their none?

Concerning access to NDIS for new participants

The NDIA “estimate Australians with a disability are currently spending between $130 million and $170 million on assessments associated with accessing the NDIS” (consultation paper, 2020). To support their implication for money saved, by the introduction of IAs in the access pathway, the NDIA need to provide the estimate spend for Australians with a disability providing sufﬁcient “evidence of their disability, including if their impairment is, or is likely to be, permanent” to satisfy the NDIA and gain the request to undergo an IA. Both estimates should be supported by data. While I would appreciate seeing justiﬁcation for the published estimate, for it does seem very large, my prediction is that new participants will spend similar amounts of money to access the “new” NDIS as they did the old.

Should assessment of a participant’s carer be part of the mix?

Carers and their contribution do not much feature in the NDIA discussion of disability. In the awarding of a level 4 home care package for my wife, the Age Care Assessment Team approach was to consider funding the assistance needed if her husband (me) did not exist. We never got past level 3 before she went into residential care and gave back the unused money because I did exist. Similarly, to the many NDIS participants who rely on carers, my guess is the cost to NDIA if the carers did not exist would rise substantially. Hence my question, should some form of assessment of the carer be part of your holistic assessment of the participant?

The MY NDIS

Although my tongue is ﬁrmly in my cheek, given my lack of qualiﬁcations, I was interested to see if I could come up with a scheme, so I had a shot.

My scheme would have at its centre an allied health professional, representing the participant, talking the same language with an NDIA planner, matched to the participant’s disability.

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The allied health professional would be the treating health professional chosen by the participant, holistically aware of the participant’s functional capacities and their improvement, and totally familiar with all the supports and programs in place to help, such as support workers, support coordinator, GP, etc. In our case the psychologist would be my granddaughter’s professional overseer.

The NDIA planner would be from a regional stable of NDIA planners, covering the spectrum of disabilities, but each planner specialising in one or a limited number of disabilities and therefore able to communicate meaningfully about a participant with their professional overseer.

As an example, in the current activity, the assessor could have an conversation/ interview with the participant but actually assess the (absent) participant via their professional overseer, using as a basis for discussion something like the annual NDIA report presently written by the participant’s treating professional.

For a participant seeking to access the scheme I suggest the need of a report from their chosen allied health professional, and this report be used as a basis for assessment by a matched assessor as above. In funding that report, with the laudable concern for equity but to minimise speculative activity, I suggest NDIA refund the cost of a submitted receipt, and the refund be 100% if the participant is admitted to the scheme, but (?)50% if not. Then, after 1-2 years of experience in the scheme, continuation could evolve to the overseer-planner model proposed above.

With regard the approach to funding, are there any lessons to be learnt from the the conduct of the government’s Home Care Package Scheme for Aged Care, for I found my three and half year (2015-2018) involvement with that scheme very positive, with only two hiccups?

Thank you for this opportunity to contribute. The NDIS is a wonderful scheme to many and it deserves a much more respectful approach by the NDIA and Minister Robert than is evident to me in their current endeavour to introduce Independent Assessments as the platform for the new NDIS.