PARLIAMENTARY COMMITTEE ON NATIONAL DISABILITY INSURANCE SCHEME – SUBMISSION FOR INDEPENDENT ASSESSMENT ENQUIRY

After having thoroughly read the Independent Assessment framework, I would like to submit my (our) thoughts and concerns about planned changes to the National Disability Insurance Scheme, and I am hoping decisions are made with proper and fair consideration and consultation, taking into account the individuals (participants) with disabilities and their families.

I am the Appointed Nominee and a family member for a participant in the NDIS, “, and my wife who is also an NDIS participant, is supporting and co-signing this submission.

The Minister for the NDIS, Stuart Robert, and the National Disability Insurance Agency have announced that all new and existing NDIS participants will now have to undergo compulsory assessments to be able to get support from the scheme. These changes will be introduced this year.

I appreciate the NDIS isn’t perfect and is constantly evolving, and that change is needed to get it working better for all participants. We fought for a scheme that would be individualised and tailored to meet people’s needs. It seems that the changes are slowly veering away from the initial concept. Every individual has his/her own unique needs and —that really needs to be recognised. Each participant really needs their ownindividualised and tailored funding.

However, I am really worried that instead of fixing the problems, the NDIA and the Minister have suddenly introduced something new that looks like it will add even more red tape and just put people with disability into convenient “boxes”. And what is worse – leave people without the support they desperately need. Where then, is our voice, choice, and control?

In my opinion, proposal such as these (without proper consultation) significantly undermine the public’s trust in the system. This can easily be seen as a main subject of great concern on most online platforms and similar groups and organisations advocating for the individualised needs of people with disabilities.

I need to know exactly what these changes will mean for my son – but also for the future of the NDIS.

Now these short, standardised assessments will be the ONLY thing that determines how much support people will receive.

I do not think these changes will work in ’s circumstances.

My son , the participant, has been diagnosed with autism Level 3 (which is the more severe on the scale) formally at age three and a half at the Children’s Hospital

in We, my wife and I, have worked hard and consistently to help him to build capacity, and that in itself has been a very slow, and very expensive process.

Even though he has evolved in some of the areas of deficit, still needs constant support and encouragement to firstly, maintain what he has achieved until now, but also to help him progress further, to hopefully one day be able to live a more fulfilling life, as I don’t know that he will ever be totally independent.

Generally, it has taken the support workers working with him between 5 – 6 months on a weekly basis, for them to then feel that they understand and his abilities and shortfalls, with the confidence to help him develop further – understanding his limitations and his needs to learn how to deal with trials, which also forms part of his capacity building. They confidently learn how far to challenge, when to encourage, and when to guide him. As I said, this can take between 5 – 6 months, given the complexity of Autism Spectrum Disorder, and the complexity of himself. And we know that all persons on the spectrum are each very different. I am afraid that as all people with ASD will fall through the system’s gaps again, as he had done up until the age of 16 and before the NDIS.

How can someone ‘get’ his abilities and deficits, his understanding, his capabilities and limitations, and his actual needs for level of support in a mere 4 hour assessment process with someone who has never met him before, and has no concept of anything relating to him as a person? How can a complete stranger work out his actual level of needs in such a short time? How can anyone in a very short period of time (hours), learn the way he communicates and his mannerisms? although vocal, cannot converse as a normal person would, and needs extra time to process questions, commands, and comments. He is best described as ‘non-verbal’, although he has speech.

There is also the fact that in such a short period of time, some of his most problematic behaviours (behaviours of great concern) may not be shown within the assessment session, leaving the assessor unable to understand the issue in itself.

So, I will now address points in relation to the Terms of reference:

Terms of reference

a.  the development, modelling, reasons, and justifications for the introduction of independent assessments into the NDIS.

   Totally understand and see the need for this – Fairness should be seen across the border, in relation both to the individual (participant) and from the Government (Taxpayers) point of view.   It is not the framework itself that is the problem, it is how it is proposed to be implemented that is a great concern.

b.

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

If this or a similar approach is taken across and over all government or similar agencies, then there is a higher risk of individuals falling through gaps and therefore people who really need services will be disadvantaged.

c.

the human and financial resources needed to effectively implement independent assessments.

Independent assessments would not be needed if the already existing allied health professionals are given a common set of tool to use and given the proper training on this.

When the NDIS was introduced, many allied health professionals upskilled themselves with little hesitation in order to comply with the NDIS requirements. The same can happen with requirements with the use of ICF.

The added advantage of this is that it would result in a clearer and more accurate picture of the individual (with minimal bias) and therefore a better and much fairer understanding as to what the individual’s needs really are.

If an independent assessor is used, it has been indicated that they could or would draw on input from ‘Circles of Support’ for the individual participants. In many cases, our case for instance, these Circles of Support are paid support workers themselves, so if they are expected to have input, it would also require extra hours of paid time, therefore more fund needed. A more costly exercise.

Also, the risk of Independent Assessors would and could be biased in the opposite direction.

d.

the independence, qualifications, training, expertise, and quality assurance of assessors.

There are questions that need to be addressed with transparency:

• What is the exact definition of ’independent assessors?
• What training will the assessors receive?
• What is the requirement/criteria to become an assessor?
• Are assessors NDIS employees? (this would be a conflict of interest)
• Do they have a key performance indicator (kpi)?
• How can we be assured and feel confident that the Agency has the NDIS participants’ best interest at heart, rather than this being a cost cutting exercise. A way of preventing people who genuinely need help and support from actually accessing this. Decision made by financial outcome.
• What happens in areas where resources and professionals are limited, and waiting lists are extremely lengthy?
• Where is the voice, choice, and control if participants cannot choose their own clinical team?

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

Who or what body is going to determine the appropriateness of these assessment tools, and how is its effectiveness going to be evaluated, and by whom.

• f. the implications of independent assessments for access to and eligibility for the NDIS.

There is definitely a very high risk of the bias going into the opposite direction, again leaving individuals at a devastating disadvantage.

• g. the implications of independent assessments for NDIS planning, including decisions related to funding reasonable and necessary supports.

This is our greatest fear because the participants’ entire plan will be based on the assessment of a person, perhaps with little or no understanding of the participant’s actual disability, and more so, how it genuinely affects him/her and/or it’s complexity.

This cannot be achieved by a complete stranger in just a few hours of observation done by a professional with little understanding of that participant’s unique situation and presentation.

I understand that, if not satisfied with a Plan decision, participants can appeal to the Administrative Appeals Tribunal (according to ‘Review of Decisions Operational Guidelines – External Review by AAT’ found in the NDIS website). Given the current public reaction, it would appear to me that the system will be inundated with appeals, time and cost consuming, and at the end of the day it is still the participant that is disadvantaged.

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

• i. opportunities to review or challenge the outcomes of independent assessments.

Are the people supervising, overseeing, or even reviewing the final outcomes NDIS employees? Again, this would represent a conflict of interest.

• j. the appropriateness of independent assessments for particular cohorts of people with disability, including Aboriginal and Torres Strait Islander peoples, people from regional, rural and remote areas, and people from culturally and linguistically diverse backgrounds.

There are again questions that need to be answered with clarity:

         a) Being a rural area, how to access assessors in a timely manner
             without running the risk of waiting on endless waiting lists?

b) Why the need to have ‘neutral’ assessors? Is neutrality even possible?

c) Will the individual assessors be cognisant of the individual participant’s environment, accessibility to local services and even cultural background sensitivity and awareness.

k. The appropriateness of independent assessments for people with particular disability types, including psychosocial disability; and

Is it even ethical to assume that a 3.5 hour assessment can start to unveil the complexity of a psychosocial disability?

Disability has many shapes, forms, and sizes and presents in a myriad of ways and levels of complexity… it is still a disability. It is virtually impossible to put all persons with a disability into a streamline scale. Each person needs to be observed individually.

For example, in my case, neither my son nor wife can stand for more than 10 minutes in a queue, but for entirely different reasons.

l. Any other related matters.

While we support the need for a fair and equitable assessment tool, we also acknowledge that such tool does not exist and will, in my view, be an exercise of trial and error until we come to a satisfactory and functional outcome for all involved, including taxpayers.

Instead of overhauling the entire system of assessments and how they are applied/measured, introduce re-training or further training for the current qualified and experienced allied health professionals and in their respective fields as education for carers and participants.

We strongly disagree with and object to the idea of an Agency appointed ‘independent’ assessors delivering the ICF tools for all the reasons stated above.

Dated 17th of March 2021