Kevin Danher

“February 24”, 2021

To whom it may concern,

I am grateful for the opportunity to make a submission to the inquiry into independent assessments under the NDIS.

Our son Liam Mark Danher, was a participant under the NDIS and was subject to a couple of independent assessments whilst his plan review was with the AAT. Over the past 18 months we have submitted to the requests of the NDIA lawyers (Mills Oakley) to:

• Request for an updated positive behaviour support plan.
• An independent OT assessment
• An independent Psychiatric assessment.

This submission will relate to the following Terms of reference:

d. The independence, qualifications, training, expertise and quality assurance of assessors. e. The appropriateness of the assessment tools selected for use in independent assessments to determine plan funding. f. The implications of independent assessments for access to and eligibility for the NDIS. g. The implications of independent assessments for NDIS planning, including decisions related to funding reasonable and necessary supports.

Firstly, let me address: d. The independence, qualifications, training, expertise and quality assurance of assessors.

An independent OT report was required by the NDIA as part of the AAT review process. I was informed in an email dated “August 20”, 2020 from Mills Oakley (the law firm representing the NDIA) that an assessment had been booked:

Further to the Tribunal timetabling for further evidence in this matter, we are in the process of organising a functional assessment of Liam by an occupational therapist. We have tentatively booked Occupational Therapist Ms Welshe on Friday, 2 October 2020 to undertake an assessment of Liam at his home.

Page 2

Whatever information provided to the assessor, in our son’s case, came from the NDIA. In fact, it came from the law firm representing the NDIA- Mills Oakley who, arranged the assessment(s) based on T-documents used in the AAT review process.

Our son’s lawyer was not privy to the information given to the independent assessor, either were we as parents/carers or Liam and there was no option to have any input. The report was to be provided to Mills Oakley once completed and only after they and their client had read and assessed the report, were we to see a copy.

Liam’s funding had already been used for an Occupational Therapist report produced on 24“ May 2020. Mills Oakley requested and were provided a copy on 23” July 2020.

At no time were we given the opportunity to verify the qualifications, training, expertise and quality assurance of the of the assessor(s). In fact, we had no input into questions asked, no opportunity to verify if/what historical reports/evidence was passed on to the assessor.

Secondly, let me address:

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

A disabled person needs to be assured that the tools being used in assessing his/her disability are the most up-to date available, readily available to them either in hard copy or online prior to the assessment.

Furthermore, it would be appropriate that the assessor has access to ALL of the information that the person with a disability feels necessary for the assessor to have in order for a legitimate picture of their disability can be formed from the assessor’s point of view.

Without all of the information both current and historical, can an assessment for funding be reached.

It is crucial that any evidence that the participant requires immediate, potentially life-saving devices to improve their safety, the NDIA MUST make an updated plan available to the participant as a priority.

It was our experience that Liam’s updated positive behaviour support plan 10“ July 2020 noted in it’s recommendations:

“assistive technology should be reviewed and purchased to assist in tracking and understanding the seizure activity for Liam with epilepsy. Seizure mat for the bed and other seizure tracking apps such as a watch should be explored. An allocation for AT should be provided to support any additional equipment recommendations from Liam’s allied health team”.

Liam’s Neurologist Request

31“ July 2020nrequested a seizure mat be purchased:

“One further device that could aid with his safety would be an under- mattress seizure sensor. | believe that such a device would be beneficial to Liam and hope this could be supplied as part of his NDIS package to improve his safety”.

The independent OT assessment 9“ October 2020 also noted that this device was required and that:

“it is noted that the information provided to me regarding Liam’s overnight support needs differ considerably to which was reported during the PBSP assessment dated 12“ July 2020 and the OT assessment dated 24“ May 2020. | therefore recommend Liam’s PBSP providers monitor his actual night time needs as observed during their data collection phase and make recommendations accordingly”.

• Liam died from a seizure in his sleep on 5“ February. 2021.The cause of death was Asphyxia, Convulsions, Refractory Epilepsy, Autism Spectrum Disorder.

We are still waiting for the recommended seizure mat. In fact, we got an email from Liam’s Support Coordinator a week after his death with a request for two “urgent’ quotes for a seizure mat. We found this particularly distressing.

Thirdly,

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

It may be that there are benefits to independent assessments for some with a disability. but the choice must be from the perspective of that person and not solely be at the benefit of anyone else including the NDIA.

Finally,

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

This MUST cover the NDIA review process. It is crucial that anyone reviewing a person’s plan e.g., NDIS, independent assessors and AAT Members ensure that ALL relevant information held by those responsible for the review share that information with any third party conducting a review. This includes any information held in T-documents and/or supplementary information/reports that could help the assessor form a view with respect to a report related to funding reasonable and necessary supports.

The NDIS is about ‘choice and control’ for all participants, pushing independent assessors not chosen by the participant, takes away choice and control.

| feel our submission brings a unique perspective to this Senate Inquiry for the following reasons;

we have first-hand experience with the use of independent assessments- x1 Occupational Therapist and x1 Professor of Psychiatry used in the past few months to assess the reasonable and necessary supports required by our son Liam Danher as a part of the AAT review process.

Our experience could shed some light on the current practices being used by the law firm representing the NDIA in this review.

Give the Senate an opportunity to use our experience and the attached documentation to seek answers from the NDIA on the process of using independent assessments.

Prevent another participant from dying whilst waiting for recommendations to be put into action.

HISTORY

Despite the information on file, used to determine the reasonable and necessary Supports required by Liam and the reports paid for using the NDIS funds, the NDIA have requested two independent assessments of their own.

Through their lawyers (Mills Oakley) the NDIA requested an Occupational Therapist report from an OT flown in from Brisbane. A further independents assessment was required for a Professor in Psychiatry to do a skype assessment from his office in Sydney.

At no time where we given any information of the assessor(s) other than their name.

At no time where we given information on the time frame of the OT assessment/ or what assessments were involved in this turned into a five-hour assessment for Liam. Furthermore, the NDIA directed the OT to do a community access visit with Liam at the end of the assessment, this was far too much for our son to endure he began to escalate in behaviour and we refused the community visit on this basis.

We felt the need to share further information with the Psychiatrist post his assessment so that he could make as assessment on the impact of Liam’s PTSD diagnosis. This information was made up of RTI files from one of two registered service providers under the NDIS.

Surely, files that detail:

e adisabled child (when Liam was under 18) being handcuffed by Queensland Police on two occasions, transported to hospital in a paddy wagon, handcuffed and without a support person.

Restrained by Police and given 10mg of Madazolam. (17mg in total).

e Where a carer “pushed Liam onto the lounge next to him, sat on him with all my weight and held his arms to his side until he stopped screaming”

e “| was forced to hold his arms on the ground with LD (Liam Danher) between my legs”

• Hospital security guards used to restrain Liam while he was sedated.
• Care staff hiding from Liam whilst he was escalating in behaviour.

| need to be assured that all of the Right to Information files offered to and sent to Mills Oakley with the expresses intention of being provided to Professor Stewart Einfeld were indeed passed on to him.

Despite being told by Mills Oakley that “hopefuilly, once our client (NDIA) has reviewed the files provided, the information will be passed on to Professor Einfeld”.

My hope is that the Senate will seek some answers from the NDIA about the specific processes used in Liam’s independent assessments the rationale behind their use, the timeline for delivery of all of the recommendations of said assessments and uncover why he died waiting for a seize mat, part of those recommendations.

| would be happy to speak in person to anyone who may wish to hear my evidence.

Sincerely

Kevin Danher