NDIA Accountability Project

Recommendations regarding Independent Assessments for people with psychosocial disability

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Committee Secretary- The National Disability Insurance Scheme

Department of the Senate PO Box 6100 Parliament House CANBERRA ACT 2600 AUSTRALIA

29/03/2021

Dear members of the Joint Standing Committee on The National Disability Insurance Scheme,

I have been an Occupational Therapist (OT) for over 20 years and wish to provide insight from an OTs’ view with relation to the planned Independent Assessment for NDIS applicants and participants with a psychosocial disability.

After completing my Master of Occupational Therapy Practice at La Trobe University eight years ago I dedicated my working life to people with severe and enduring mental health conditions/ psychosocial disabilities.

My professional roles since then include; Support Facilitator with Partners in Recovery (PIR), OT on an acute Aged Persons’ Mental Health ward and Community Mental Health Practitioner at an Prevention and Recovery Care Service (PARCS). For the last 3 years I held the role of Clinical Specialist Advisor for Mental Health at a large company providing NDIS services across Australia. In my current role I have conducted functional assessments and interventions for 83 NDIS participants with a psychosocial disability and provided many more functional assessment outcome reports and progress reports.

Summary:

  • The IA does not guarantee equality.

  • The IA will disadvantage people with a psychosocial disability.

  • The IA will disadvantage Aboriginal and Territory Straight Islander people, people from a CALDS background.

  • The assessments tools in the toolkit may not be the most appropriate ones.

  • The assessor may not be knowledgeable/ experienced with re to the disability/ condition the person presents with.

  • The participant may not feel comfortable to meet with a stranger to discuss very private and intimate matters.

  • The participant may need time to build rapport over more than 1 session before disclosing any difficulties in functioning.

  • Aboriginal and Territory Straight Islander people, people from a CALDS background and people with a psychosocial disability must be allowed to choose their regular practitioner to conduct the IA.

  • Collateral information/additional allied health reports are required to capture the full impact of the disability.

  • Functional assessments for people with a psychosocial disability cannot be conducted by speech therapists or physiotherapists; only OTs and clinical psychologists are qualified to do so.

  • One year experience is insufficient in order to conduct comprehensive functional assessments.

  • The assessment process needs to be funded with 10 hours’ worth of funding.

Terms of reference - Independent Assessment (IA)

a. The development, modelling, reasons and justifications for the introduction of Independent Assessments into the NDIS;

The NDIA advised that the current system is not fair as it heavily relies on the quality of allied health reports provided. From my interactions with the NDIA I may also add here that the planning outcomes heavily depend on the experience of the planner (namely experience in disability) and that the same request made by the same OT may or may not be granted by the NDIA, depending on which planner assesses said request.

I wonder how the IA will establish equality? What about the educated participant who has strong advocates who will just answer the questions to get the best outcome? What about the participants who don’t have insight or don’t understand the ramifications of the assessment and just answer “no problem”? due to lack of insight or to please the person (both very much part of a psychosocial disability). Yes/ no answers do NOT capture complexity or fluctuation. How is complexity captured? How are individual needs captured? How is the fact that people may need time to have services in their lives captured?

The NDIA also suggested that allied health providers are biased in their reports- this is an absolute assault on my profession and based on opinion only. I question where the evidence is to support this statement.

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

International studies evidence the potential for harmful outcomes when disability assessment is conducted via a point-in-time standardised checklist by a mandated assessor. These harmful outcomes include increased rates of suicide, increased mental health impacts and increased reliance on prescribed medication (Barr, 2015).

Negative outcomes of IAs conducted in England to determine support needs have been summarised here:

https://www.disabilitynewsservice.com/atos-pays-out…/ …

https://www.disabilitynewsservice.com/court-orders…/ …

https://www.independent.co.uk/…/benefits-uk-disability…

https://www.disabilitynewsservice.com/atos-nurse…/ …

https://www.liverpoolecho.co.uk/…/how-disabled-people…

https://www.wsws.org/en/articles/2020/07/29/maln-j29.html

c. The human and financial resources needed to effectively implement Independent Assessments;

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The human resources required to effectively implement IA is immense. Many areas within Australia do not have access to allied health providers at all; other areas have a wait list of 6 to 8 months, if they get accepted onto a wait list at all.

The NDIA have not advised to date as to how they will manage this, particularly given that they request an assessor to have at least 1 year experience.

  • d. The independence, qualifications, training, expertise and quality assurance of assessors;

The NDIA advised that 1 year of experience is sufficient to conduct IAs.

I strongly advise against this being sufficient. An allied health practitioner with at least 5 years’ experiences is much better equipped in assessing the complexities regularly presenting themselves in the lives of people with a psychosocial disability.

Similar roles within the Aged Care Assessment service require senior practitioners; a min. of 5 years’ exterience.

Consideration also needs to be given to staff safety: Behaviours of Concerns (BOC) are often not known until I meet the person. Information as to BOCs are not necessarily found in a participants’ plan unless there is funding for Improved Relationships. It cannot be expected from an OT with 1 years’ experience to manage these situations.

The independence of the assessors is not provided given that the tenders have been granted to companies affiliated with the NDIA and LACs.

  • e. The appropriateness of the assessment tools selected for use in Independent Assessments to determine plan funding;

There is an absence of evidence supporting the assumption that functional capacity can be measured in a ‘disability neutral’ manner, in Australia or internationally. Research highlights the global absence of a single assessment tool or suite of tools, proven to have the ability to do this (Madden, 2015). WHO ICF research branch developed the ICF Core Sets in acknowledgement of functional variability between disability groups.

Construct validity is the ability of the tool to actually measure what it is intended to measure. There are issues with construct validity in the Independent Assessment toolkit - the construct being measured with Vineland 3 and CHIEF are adaptive behaviour and environmental factors respectively, ot functional capacity.

Aspects of the assessment tools are contrary to the NDIS Act 2013 concept of enabling social participation. E.g. The CHIEF explicitly states social supports cannot be addressed through funded supports. Direct quote - “Social barriers can only be remedied by attitude change in others. Extra funding is not likely to solve these particular problems.” (See P3 CHIEF User Manual version 3.0)

  • f. The implications of Independent Assessments for access to and eligibility for the NDIS;

I agree with the NDIA that this assessment should be available at no cost to the applicant. I do not support that this assessment is to be undertaken as an IA due to numerous reasons:

  • The assessments tools in the toolkit may not be the most appropriate ones;
  • The assessor may not be knowledgeable with re to the disability/ condition the person presents with;
  • The applicant may already have an allied health provider who knows them well and is therefore in a much better position to report on the persons functioning accurately;
  • The applicant may not feel comfortable to meet with a stranger to discuss very private and intimate matters;
  • The applicant may need time to build rapport over more than 1 session before disclosing any difficulties in functioning;
  • Collateral information/ additional allied health reports are required to capture the full impact of the disability.

g. The implications of Independent Assessments for NDIS planning, including decisions related to funding reasonable and necessary supports;

The United Nations Convention on the Rights of the Person with Disability (UNCRPD), which Australia signed in 2007, and the National Disability Strategy 2010-2020 (2010), emphasise the inclusion of people with disabilities in decision-making, and active participation in designing systems that support them.

To date, I have been unable to find any collaboration between the NDIA and Peak Organisations for people with a psychosocial disability and/or people living with a psychosocial disability to construct a new way of assessing functioning.

The NDIA advises that “the (independent) assessment does not indicate what supports or services you will need.” In other words, the assessment will only be conducted to ascertain funding levels within different severities of disabilities. I am very concerned that this will result in sub-optimal participant support and capacity building funding resulting in scenarios listed under b) including subsequently poorer disability outcomes and death.

h. The circumstances in which a person may not be required to complete an Independent Assessment;

In my view there are many circumstances in which a person with a psychosocial disability should be allowed to use their regular OT to conduct the assessment. This is to assure accuracy of the assessment and to not cause harm to the participant.

These circumstances include:

  • History of trauma/ complex trauma/ PTSD;
  • Person presenting with BOCs;
  • Diagnosis of schizophrenia with positive symptoms;
  • Diagnosis of ASD/ ADHD;
  • Diagnosis of anxiety/ generalised anxiety disorder;
  • Diagnosis of depression;
  • Chronic or acute suicidality;
  • Dual disability (mental health diagnosis and intellectual disability);
  • Dual diagnosis (mental health diagnosis and drug/ alcohol use);
  • People receiving support from State government as well as the NDIA;
  • Homelessness;
  • Survivors of violence/ domestic violence/ natural disasters;
  • People with a diagnosis of Dissociative Identity Disorder (DID), previously known as Multiple Personality Disorder (MPD);
  • Diagnosis of Cluster A,B or C Personality Disorders;
  • People requiring recurrent hospital admissions due to acute decline in mental health (more than 1 admission per year);
  • People needing a clinical case manager.

I am not sure this will leave anyone with a psychosocial disability able to being assessed without calling harm.

i. Opportunities to review or challenge the outcomes of Independent Assessments;

It is my understanding that IA outcomes cannot be challenged within or outside the NDIA via an internal review or AAT application. As there is no avenue to have the outcomes reviewed, natural justice is declined to NDIS participants or applicants.

This is contrary to processes granted to “abled bodied” people with relation to Government Programs. I wonder whether this constitutes discrimination against a person with a disability.

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;

The assessments provided in the toolkit are not suitable to use with Aboriginal and Torres Strait Islander peoples and people from culturally and linguistically diverse backgrounds as they cover asks which are not relevant to this group of participants.

Also, the understanding of disability and in particular psychosocial disability of this group of participants and their families is very different to that of a “white Australian”. This approach requires further planning and consultations.

Generally, this group of participants is much more likely to engage with a person already known to them.

k. The appropriateness of Independent Assessments for people with particular disability types, including psychosocial disability;

Independent Assessments as they are planned at this point in time are not suitable for people with a psychosocial disability. I explained the reasoning for this throughout this submission.

l. Any other related matters;

  1. Validity of the WHODAS 2.0 as used at present:

Multiple reports from participants who volunteered to partake in the pilot project confirmed that

the NDIA has changed the WHODAS 2.0 scoring system from being between 1 (no problem) to 5 (extreme problem/ cannot do) to a simple Yes/ No answer e.g. “Can you shower yourself?”.

The WHODAS 2.0 as therefor lost its validity.

I question whether the NDIA thought consent from the World Health Organisation to change the WHODAS 2.0, and therefore are in breach of the user agreement:

  • You (“User”) shall not modify, abridge, condense, translate, adapt, recast or transform the WHODAS 2.0 in any manner or form, including but limited to any minor or significant change in wording or organization, or administration procedures, of the WHODAS 2.0. If User thinks that changes are necessary for its work, or if translation is necessary, User must obtain written approval from WHO in advance of making such changes. ([https://www.who.int/…/who-disability-assessment-schedule](https://www.who.int/.../who-disability-assessment- schedule)).

Lack of use of other allied health reports/ collateral history:

The NDIA advises that the IA are to be conducted by use of the assessments provided in the toolkit alone and that no other reports are to be considered.

When conducting assessments of particularly complex participants (e.g. behaviours of concern; forensic history; multiple stakeholders; multiple, co-occurring diagnosis) I would have not been able to outline the participants’ functioning with absolute certainty if I did not have other specialist reports available, e.g. speech therapist, positive behaviour support, psychologist, forensic specialist, pyschiatrist, drug and alcohol counsellor.

Observation of a chosen task:

The NDIA advises that the participant is to engage in a chosen task during the assessment.

While the observation of tasks is a very important part of an OT functional assessment I question how the observation of one participant-chosen task by clinicians who are not trained to observe such tasks (e.g. a speech therapist observing a transfer task) can add any value to the assessment?

The chosen task (e.g. taking the rubbish out) may also have no relevance to the assessment outcome as the person may:

  • only do this because they were assessed and would not normally engage in this task or
  • the person has no problem with taking the rubbish out but can’t distinguish perished versus fresh food in the fridge.

It requires an OT who is experienced in working with people with a psychosocial disability to analyse tasks and comment on whether the person usually engages in these tasks and to the successfulness completion of the task.

Consideration with re to the need to build rapport:

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Many people I work with require support from other health professionals/ support workers to engage with a new person in their lives. This is often due to trauma or paranoia and general distrust in others.

This support may include making the first contact, agreeing to a visit, attending the appointment, being able to have a conversation with myself etc.

This rapport building period may stretch over multiple appointments; a one-off assessment is not possible and may well be cause harm to the person e.g. increased paranoia.

5. Consideration with re to location:

Many of the people I work with will not meet with me at their house, at least initially, even if support is available to them.

Initial meetings may take place at the local park, cafe or fast-food restaurants.

6. Consideration with re to the available time to conduct the assessment:

Many of the people I work with need more than one appointment to feel comfortable to work with a new service provider. The allocated time slot of 1 to 3 hours will not be sufficient to build this rapport and to conduct the assessment. Very often, more than 1 appointment is required in order for the person to feel safe with the clinician and discuss their day.

As well as the 83 assessments mentioned above I have provided two NDIA funded independent assessment reports to the AAT during the last 2 years. On both occasions I insisted on having funding available for at least two appointments and also to read all the reports provided by other stakeholders before writing my own report and addressing the questions put towards me by the NDIA.

People with a psychosocial disability can fluctuate significantly with re to their functioning from day to day and even throughout a day. If the assessment only allows for one appointment over 1 to 3 hours then this fluctuation may not be captured accurately.

Since the NDIS commenced, 10 hours were funded for OTs to conduct functional assessments and reports. I cannot understand why this is now reduced to a max. of 4 hours. Is this to make these assessments and reports less comprehensive?

7. Consideration with re to suitable qualifications:

I strongly recommend that only clinical psychologists and OTs are to assess people with a psychosocial disability as they are the only professions experienced in conducting functional assessments.