Late Submission – Proposed NDIS Independent Assessments

7 April 2021

Hon Kevin Andrews Chair Joint Standing Committee on the National Disability Insurance Scheme PO Box 6100 Parliament House Canberra ACT 2600

Dear Hon Mr Andrews

I request that the Committee accepts my late submission to the Joint Standing Committee’s inquiry into the Proposed NDIS Independent Assessments.

Attached is a personal submission that I provided to the NDIA concerning two consultation papers:

Independent Assessment Pilot Trial; and
Access and Eligibility.

I currently receive NDIS funding to meet economic and social goals and volunteered to participate in the Independent Assessment Pilot Trial.

I found the process troubling for a number of reasons including: - The capability for an independent assessor to be sufficiently cognisant of the wide range of often complex impairments; - The length of time for the interview and the impact on those being interviewed; - The question sets used and particularly their applicability to people with permanent degenerative neurological impairments; - The questions had a strong focus on S24 disability requirements and very little, if any, on S25 early intervention requirements.

No question I could recall on the benefit of early intervention therapy to mitigate or alleviate the impact upon my functional capacity.

I would hope to provide feedback based on the independent assessment report but it has been 10 weeks and I have not yet received a copy of the report.

I have appeared before Senate Estimates and Joint Standing Committees for over 20 years as a senior Commonwealth public servant.

I would welcome an opportunity to appear before the Joint Standing Committee on the National Disability Insurance Scheme to give a personal first hand account of an Independent Assessment interview.

There has been a lot written about the independent assessment process but very little of the experience for applicants and participants.

PERSONAL SUBMISSION TO NDIA CONSULTATION

INDEPENDENT ASSESSMENT PILOT TRIAL; AND
ACCESS AND ELIGIBLITY CONSULTATION PAPER

Personal Jeff Smart

details

Impairment I have been diagnosed with Parkinson’s Disease.

Timeline I received an invitation to participate in the independent assessment pilot 13 November 2020. I accepted the invitation, and an interview time was confirmed 22 December 2020 for an independent assessment on 27 January 2021.

           The independent assessment occurred as planned. As at 7 April 2021, I have not
             received a copy of the assessment report nor an invitation to provide feedback
          on the process.

             At a community consultation event I participated in 16 February 2021, I became
           aware that comments on the NDIS Access and Eligibility Consultation Paper were
             required before 10am 23 February 2021.

                          I thought it would be useful to provide feedback by the deadline for the Access
           and Eligibility Consultation Paper even though I had not seen my independent
            assessment report.

Independent Assessment Experience

Where did the The independent assessment took place at my residence. asessment occur I was accompanied by my wife.

Assessor’s The independent assessor was a qualified clinical psychologist. She had limited Knowledge of knowledge of Parkinson’s Disease (PD). Personal Impairment The independent assessor asked me to perform some simple activities so she could observe my functional capability. A suggested activity was to make a cup of coffee. Apart from a minor resting tremor, observable before I commenced this task, none of my impairments related to PD would have been observable.

As I was aware what she was trying to achieve, I suggested that I do different activities which would demonstrate my impairment. These included walking down a corridor, a handwriting demonstration and using a vegetable grater. For each of the tasks I provided commentary on the linkages to my PD impairment.

At various points during the assessment I became aware that the independent assessor was not familiar with the range of PD symptoms and I felt the need to add further information to the standard questions asked. For example, the independent assessor may have noticed that I was softly spoken, but I do not remember an explicit question about the need for a voice or swallowing assessment which would support an early intervention therapy from a speech therapist.

I found that the questions / toolsets were asked in a professional manner but without a reasonable understanding of a complex condition such as PD, I am concerned that my independent assessment report, which I am still to receive a copy of, will rely on my contributions, sometimes not prompted, to inform the independent assessor separate to the answers to the standard question.

With over twenty year’s experience as a senior executive in the Commonwealth public service I have a good grasp of process and guidelines. I believe that a less informed person living with PD may not provide the necessary additional information to the standard assessment questions.

Overall, and without reading the independent assessor’s report, I doubt that a clinical psychologist applying the standard set of tools could fully appreciate my impairment from PD to support early intervention therapies. From my experience of working with a range of allied health providers, I doubt if one therapist alone could sufficiently apply the standard set of questions to fully identify the early intervention supports that I require to meet my economic and social participation goals, based on both my lived experience and extensive research findings.

Length of the The independent assessor met me at the scheduled time independent assessment I was offered breaks which I declined. Notwithstanding, it took almost three and a half hours to administer the independent assessment, of which the last 20-30 minutes I was asked to leave the room.

At the end of three hours, and given the confronting nature of some of the questions, I was mentally and physically exhausted.

I appreciate that this length of time may be required to apply the standard tool set for an independent assessor who has never previously met an applicant or participant. Yet it is a huge ask depending on the impairment. Although not applicable to me, I have friends with PD who could experience an on/off cycle during 3 hours.

Overall feedback

Overall, I felt that the over three hours of intense questioning was too long. If the NDIA proceeds to implement independent assessments it needs to review the process for collecting the information.

Independent Assessment Questions

Without fully understanding the differences between the tool sets, a lot of the questions seemed repetitive.

Many of the standard questions were also irrelevant. I felt offended that several questions asked of my wife, when I was not present, related to assessing autism related symptoms.

I have a clinical diagnosis of PD with mild cognitive impairment but no presence of dementia. I struggle to see the relevance of asking psychometric assessment questions which relate to the diagnosis of conditions in children.

The last set of questions required me to leave the room and for my wife to provide answers. For some NDIS participants this may be useful and appropriate but I question in my case if it furthered the independent assessors understanding and appreciation of my impairment.

A lot of my experience with the NDIA is that I have been assessed against S24 Disability Requirements even though I have clearly asked to be assessed against S25 Early Intervention Requirements. (refer comment below re List B)

The standard questions continued with this theme.

There was a clear focus on disability, as measured by current functionality/impairment.

Although I have not received a copy of the independent assessment report, I cannot recall any specific question(s) on my recovery of functionality or the reduced disease progression from early intervention therapies that I am benefiting from.

Consistent with S25(1)(b), there did not appear to be any consideration in the questions of the benefits of providing early intervention supports nor S25(c)(i)&(ii) benefits.

Summary

I found the trial independent assessment had several flaws:

The independent assessor had limited knowledge of PD and the range of symptoms.
The task requested to observe functional capability was not relevant and it is only that I suggested alternate tasks that the independent assessor could complete this part of the assessment.
There was a lack of questions to fully appreciate my impairment.

It is doubtful that for a complex condition such as PD that one qualified allied therapist could substantially appreciate my functional capability – both before treatment, current and future improvements.
The application of the standard toolset of questions took too long to administer.
Some of the questions appeared to ask for similar information.
Some of the questions were irrelevant, some of which bordered on being offensive. For example, psychometric test questions relevant to diagnosing autism spectrum disorder conditions.
I question for the last set of questions whether the requirement for me to leave the room was necessary.
The questions had a strong focus on S24 disability requirements and very little, if any, on S25 early intervention requirements.
I do not recall any question on the benefit of early intervention therapy to mitigate or alleviate the impact upon my functional capacity.

Overall, I appreciate the intent for a more consistent and objective assessment but in its current form one set of questions administered by a single qualified allied health practitioner with limited knowledge of complex neurological conditions, focussing on disability not early intervention, may not achieve an objective and balanced outcome.

The insurance aim of the NDIS

The insurance aim of the NDIS is to provide early intervention support to potentially avoid or to delay “substantially reduced functional capacity” not to wait for it to occur. It is more effective in some cases to provide early intervention supports for participants to resume, or continue, their economic and social contribution before substantial impairment from which it would be more complex and resource intensive to fund under the NDIS Act.

There is substantial research material that comprehensively concludes that early intervention supports for PD that meet the benefits described in S25(1)( c).

Section 3.3 Information provided before an Independent Assessment states: The applicant’s treating health professional may also be asked to provide evidence that early intervention supports would be beneficial and likely to reduce their future support needs.

Such an information request, would clearly satisfy S25(1)( c). To seek further information does not contribute anything further to the assessment process.

A confirmed diagnosis of PD with an impact statement acknowledged by a neurologist should be sufficient to determine whether a participant applicant meets the access requirements in S21.

This approach is supported by List D which is titled “permanent impairment where no further assessment is required”.

Removal of One of the current confusions is that PD is on List B which is used to assist in determining whether someone’s condition meets the disability requirements, Lists A, B and whereas List D was used to assist in determining whether someone’s condition met the early intervention requirements. D
I support maintaining the Lists but moving PD from List B to List D.

Information It is reasonable for the NDIA to request further information to prepare an required to applicant plan for a person living with PD. Notwithstanding my earlier feedback prepare a on the independent assessment pilot, some form of standardised process would Participant assist with consistency and fair outcomes. Plan

Proposed Noting my structured arguments above, I believe that for people living with PD, Access and steps 3 and 4 could eliminated and the delegate could proceed direct to step 5. Eligibility Process for There is a substantial saving in time and resources which could be invested in People aged 7 plan preparation. – 65 A significant benefit of delaying the collection of a smaller set of information than included in the proposed independent assessment to support a participant

Application Decision

The application decision is that it will be less combative environment and may lead to a more collaborative process.

S26 S26 allows the delegate to request information necessary to determine if an Information applicant meets the access criteria. To request a comprehensive independent Requests assessment seems excessive if the applicant has already provided sufficient information to satisfy S25.

Report Section The appropriateness of the suite of assessment tools for people living with PD is 3.4 questionable noting the following statement: Determining Functional The suite of assessment tools is consistent with the national guideline Capabilit8y for the assessment and diagnosis of autism spectrum disorders (ASD) in Australia.

                        I acknowledge that 63% of current participants have a psycho social impairment.

           But this does not mean that the proposed suite of assessment tools is
            appropriate for those of us with permanent degenerative neurological
            impairments.

Appealing and Section 3.11 of the Access and Eligibility Consultation paper notes that the Independent content of an Independent Assessment Report is not appealable. Assessment Report From my experience of participating in the Independent Assessment Pilot Trial, there is significant risk of an allied health professional with limited knowledge of a complex condition such as PD coming to erroneous conclusions.

           There is no consideration of applicants commenting on a draft report or even
            having the opportunity to provide a dissenting report to the delegate before the
            delegate makes a decision.

                     If I have understood the proposed process, there appears to be a lack of natural
               justice in that the applicant / participant is not able to correct incomplete or
          wrong information that the delegate is relying on to assess the applicant’s /
              participant’s claim.

Changes to At a community consultation I asked if there were any consequential proposed the NDIS Act changes to the NDIS Act and Participant Rules and was advised that there may and be changes but they have not yet been drafted. Participant Rules This makes it difficult to understand and comment on the scope and impact of the consequential legislative changes.

                    It would have been more transparent if the consultation paper had indicated
                likely changes to the NDIS Act and Participant Rules.

Summary of Comments on Access and Eligibility

My comments and analysis are based on the current NDIS Act and Participant Rules. If the legislative underpinning is changed, I hope that sufficient time is provided for community feedback.

The NDIS consultation paper asked for comments before 23 February 2021 but it is not obvious how these comments will be assessed before implementing the proposed changes by mid 2021 and whether these changes will be implemented using the existing legislative framework.

Summary of Comments:

It is possible to collect sufficient information to satisfy the early intervention requirements of S25 for a delegate to make a S21 access decision without requesting a full Independent Assessment.
This process is supported by Section 3.3 where a treating health professional could be requested: “to provide evidence that early intervention supports would be beneficial and likely to reduce their future support needs”.
PD should be moved from List B to List D
I acknowledge that a form of standardised question would lead to improved consistency and fairness but I do not believe that the proposed suite of assessment tools, which is consistent with the national guideline for the assessment and diagnosis of autism spectrum disorders (ASD) in Australia, is appropriate for applicants and participants with permanent degenerative neurological conditions.
By not making the Independent Assessment reports appealable, there is a risk of natural justice if a delegate does not take into account a dissenting view from an applicant or participant.
There is no indication of any proposed changes to the legislative framework and whether these legislative changes will be made before implementing the changes outlined in the Consultation Paper.