Son's experiences with Severe Verbal Dyspraxia and Motor Dyspraxia within the NDIS scheme | External submission

Submission Joint Standing Committee on the National Disability Insurance Scheme re Independent Assessments

EXECUTIVE SUMMARY:

The NDIS “Independent Assessments” are not really independent – they are just independent of the participant or potential participant.
If there are genuine good intentions in their implementation the development of an appropriate safety net should be included to ensure that a participant cannot get removed or “de-funded” (except for fraud) from the NDIS.
Any assessor should have access to the prior reports from the medical professionals to ensure that they are properly briefed in the participants challenges, and the assessor should be senior in their profession; their profession must cover the prominent disability. Multiple assessments may be necessary if the participant has multiple disabilities.
There is no practical reason an assessor can properly complete an assessment in the 3 hours (as I was told in the trial it should take). - Treating professionals will have taken the equivalent of many days in elapsed time over a long period of time to provide their assessments.
The “Trial” is a failure based on my lived experience - poor methods of choosing the profession of an assessor, poor organisation to undertake the assessment and no thought to the logistics of the operation of the assessment. This means if the Independent Assessment idea is continued the trial needs to be redesigned and implemented from scratch.
The damage that could be caused if the assessment is not accurate is enormous, and potentially life-threatening/changing for the participant and/or their family. The outcome means that any negative change needs to ensure there is the right for a participant for procedural fairness with a right to appeal, as well as substantial funding for test cases, with counsel of their choice.
It is unfair an assessor and a nameless person inside the NDIA who makes the final decision to be judge, jury and give the final word, without the ability to appeal.
Finally, just because possible legislation says that NDIA may be able to order an “Independent Assessment”, the question needs to be asked

OUR EXPERIENCES WITH THE NDIS SCHEME

My son is a participant in the NDIS scheme and has been part of the scheme since it commenced in our local government area. I have omitted using his name to protect his privacy. We have found the outcomes from the scheme to be wonderful, and successful for our son.

Initially he came into the scheme as a 6 year old, and he now 9. He has Severe Verbal Dyspraxia and Motor Dysparaia. When he entered the scheme, he had already been seeing Allied Health Professionals for four years that we had been paying for ourselves.

At the age of 6 he had difficulty saying Dad, as well as his own name, using gestures to communicate with most utterings being intelligible to anyone but his family or the teachers at school. He is fortunately enrolled and attends a “normal” school and has a full-time aide in the classroom and loves going to school.

HHowever, when asked “does he have any friends” – he comments “No friends”. He does not wish to participate in team or group sports as he finds severe difficulty in keeping up and focusing on multiple actions at once. Even though we and OTs try and practice with him, the skills of the other boys are growing. He is being left behind.

The school is highly supportive with an adapted curriculum, regular parent and school meetings, and keeping him learning in the classroom. The school does their best to try and include him in the other children’s play; however he prefers helping in the school vegetable garden. We could not have picked a better school; the other students accept and do not tease him. The school is amazing.

We have integrated the assistance (with the school agreement) that the NDIS funds to provide into his school day. Speech Therapy is provided at school by our therapist attending also is his classroom aide. This assists in ensuring that practice is scheduled with the aide at school - and is practiced at school each day and at home. He also undertakes Occupational Therapy at home, and Speech in the school holidays.

the NDIS scheme and funds mean that we have a son who has gone from being very silent couldn’t say his name to now wanting to participate, and trying to express an opinion (however hard he is to understand). It has given him a voice – basic but we hope with continued speech pathology and practice this is something that can only grow.

He can now say his first name (somewhat clearly) and is now happy to try and write.

HHowever when he was 7 I was told verbally he would be removed from the scheme as he “was not disabled enough”. Later, in another call I was told ‘ohh’ I did not read a document. Its all ok Sorry!

Independent Assessments

Submission 354 The reason for the submission is to try and express the fear for him, and us that I thought in that moment, and what the consequences were if this was true.

My fear is that if the Independent Assessments were to occur as proposed (and I have experienced) the incredibly hazardous consequences in the case of a negative result will have on participants and their families/carers without due process, fairness and no proper and fair right of appeal.

Wwas pleased to be offered a place in the Pilot – and undertook the assessment 3 weeks ago. As we live in an area where face-to-face was not offered in the pilot the Independent Assessment was performed via Zoom and due to the inadequateness and challenges of the assessment for my son it has prompted my submission.

to be clear – I see the scheme as an “Insurance Scheme” – to provide “top up” assistance from what a disabled person requires, to enable them to be put in as similar position as a person without those challenges as possible. I have another son at the same school – and compare his needs and the delta with this son.

My eldest son also required speech pathology, but no-where near the same extent and finished with it at the age of 11. There is a “visible to all” difference between the two boys.

our hope is that my older son has the skills and ability to be and live independently and be a participating member of the Australian society. I hope this means he will have a job (be a taxpayer) have good friends and have a solid and loving relationship with someone who he cares for and they care for him.

i also hope at some stage it is no longer necessary for him to be on the scheme, if that’s at all possible.

OUR EXPERIENCE WITH THE INDEPENDENT ASSESSMENT TRIAL

The experience with the Independent Assessment Trial:

The assessment of our son took place via Zoom.
It took just over 4 hours without a break. My son was involved for approx. 20 minutes. I was told it should take 2-3 hours in total.
I received a call beforehand to schedule; the suggested time was 7pm (he would be in bed). They did not know anything about him, including for what reason he is on the scheme. We commenced at 4pm. They thought he was female.
It was suggested that via Zoom they will observe him whilst he is playing, aand I should pick a favourite toy, but not a device.
I was sent a list of replies to some of the questions when asked so they would not have to read out the answers each time. None of the questions that were asked related to these questions.
The Assessor was an OT, even though my son’s primary disability is Severe Verbal Dyspraxia. To be clear – the Assessor was professional, had a good

personality,

and was calm and I could have a conversation with her easily. This was important as we spent 4 hours together via Zoom. I believe that the Assessor usually worked with Adults.

I am yet to receive a copy of the report so cannot comment if the outcome from the Independent Assessment = Our Lived Experience = Our Sons Treating Professionals.

If the assessments occur in the same manner as my sons and with the consequences as envisaged, I believe that the risks (emotional, physical and “sudden removal” from the scheme) to the participant and their families outweigh any benefit (apart from financial) to the Commonwealth.

W would also argue that the long-term burden or the threat of removal or reduction of funding of a participant in the scheme will have significant social consequences that will erode significantly or all of those financial consequences.

ANSWERS TO THE PROMPTED QUESTIONS

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

the assessment of our Son took place via Zoom. It took just over 4 hours without a good break. I did stop for a water break.

it was tiring and tedious, and difficult to answer questions that in the end just blurred from one into the other. I am used to Zoom calls, but not to this intensity and thought required behind every answer.

Recommendation if Independent Assessments were to be implemented:

Screen sharing can be implemented where a participant or their carer can read the question, and answer with a number that corresponds to an option. Limiting the need to repeatedly ask the group of answers.
Any person undertaking the Assessment must have the significant experience (not just training) in the primary and where appropriate secondary disability that the participant has, with relevance to their age.

dependence, qualifications, training, expertise and quality assurance of assessors;

By definition any NDIS appointed representee is not “Independent”. Perhaps someone independent who does the Assessment should be independent of both parties, and have the right level of skills.
Any person undertaking the Assessment must should be at a “senior” level in their profession. Not be fresh out of university. The key here is the outcomes are so important (or the wrong outcome will case so much

Independent Assessments

Submission 564

damage – you would not let a junior doctor operate on a critical organ, why would you let a junior OT for example write a report that would remove someone from the NDIS?

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

I think any tools are a guide but may not be appropriate to be used as 100% confirmation of what should be provided. Disabilities are unique as people and families are unique, and they do not cater for every situation.

the implications of independent assessments for access to and eligibility for the NDIS; The implications of independent assessments for NDIS planning, including decisions related to funding reasonable and necessary supports:

By definition any NDIS appointed representative is not “Independent”
I think an Independent Assessment can be particularly useful those people who do not have the ability to source an assessment themselves or do not have someone who is providing an ongoing qualified medical opinion.
I think as a tool for ongoing eligibility they are very poor – and that has been shown through my situation with my son.
If a participant is progressing well and meeting their goals, and the goals are being stretched every year, you need to ask why is an Independent Assessment needed at all?

the circumstances in which a person may not be required to complete an inindependent assessment; opportunities to review or challenge the outcomes of independent assessments:

I believe that unless a participant is not meeting their goals, or cannot source quality medical opinion then an Independent Assessment should not be necessary, even then it needs safeguards.
I believe that the situation where funding is removed, as was threatened in my son’s situation requires limits to how the assessment can be used (if they were to proceed).
If the Assessor is judge and Jury, and a negative outcome (not fraud related) is reached then the consequences of removal from the scheme and the removal of supports that were deemed Reasonable and Necessary only a review earlier will break families, leave disabled people desperate and perhaps destitute