Impact of Independent Assessments on Individuals with Autism Spectrum Disorder

31st March 2021

Written Submission to the Joint Standing Committee on the National Disability Insurance Scheme – Autism Spectrum Australia (Aspect)

Autism Spectrum Australia (Aspect) welcomes the opportunity to provide written feedback to the Joint Standing Committee on the National Disability Insurance Scheme – Independent Assessments (IAs). Aspect is Australia’s leading national autism service provider and knowledge leader. Using the expertise within our own research unit, Aspect Research Centre for Autism Practice (ARCAP), to identify evidence- informed practices, Aspect provides a broad range of services to support individuals and their families across their life span to achieve outcomes that are important to them, by engaging with them in their communities.

These include:

Regular services in all states and territories (except WA) and a national program of workshops and consultancies known as Aspect Practice, based on the organisation’s distinctive capabilities.
Direct services (both fee-for-service and NDIS funded) for children including diagnosis and assessment; early childhood development; behaviour support; schooling - incorporating nine autism specific schools with over 100 satellite classes; education and family support; assessment; transition and educational outreach services.
Direct services for adults (Aspect Adult Community Services, Aspect Employment) in the form of preparation for employment and community-based services.
A national resource for families and services seeking information and advice about people on the autism spectrum.

The organisation employs more than 1000 staff, many of whom are highly skilled professionals and experts in the field of autism, including clinical psychologists, psychologists, specialist teachers, speech pathologists, occupational therapists, social workers and adult services staff. The following feedback is based on our expertise, work and services.

1. The development, modelling, reasons and justifications for the introduction of IAs into the NDIS;

The proposed model is inherently flawed because assessments will be conducted by teams contracted by the NDIA, therefore they are not independent.
The implementation of IAs is based on a small pilot with limited consultation across the sector. Throughout the process there has been inadequate transparency as the assessment tools identified are diagnosis-neutral and at no stage throughout the implementation has there been any co- production with participants.

Implementing IAs within a disability scheme that does not meet the needs of specific disability types, in particular autism, will ensure that the function, impact and outcomes of the assessments will not meet the needs of individuals.
A one-off assessment with an unfamiliar person who has limited background understanding of the individual and the nature of the disability will have lasting and detrimental impacts. The participant has no choice of assessor, and limited engagement regarding where and when the assessment will take place, and in what environment.
This one size fits all assessment process does not consider differences across environments- in particular transitioning, generalisation of skills and the relevance of being observed/scored by someone unfamiliar. This single isolated snap shot via questionnaire does not take in to account functional skills across various settings and is likely to be detrimental to the participant and have lasting effects (e.g., on the amount of funding received and the supports that are able to be accessed).
There has been anecdotal feedback during the pilot phases that undergoing an IA has been traumatic for participants and family members and there is no confidence in the ability of the assessment to adequately identify complex support needs.
We acknowledge there are inequities around current planners’ abilities, and we have seen that those participants/families/carer/support networks who are the strongest advocates have been able to secure larger funding packages. Others, especially those who are less informed or require additional support to understand the scheme or are from lower socio economic or cultural backgrounds, do not receive equitable plans. The IA process will not overcome these challenges. Implementing a single snap shot assessment will not ensure equity, as the nature of the assessment will not truly capture the disability specific needs and supports required.

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

services;

Approximately 20 years ago, Centrelink outsourced job capacity assessments completed by Psychologists to 5 external agencies but also kept Centrelink on as a 6^th agency. The main reason for this change was the belief that there were too many people successfully applying for disability support pension. This situation is highly relevant to the proposed introduction of IAs in the NDIS. The aim was to reduce costs across the funding scheme.
In the Centrelink situation, the Government provided significant funding to the external assessors who, in turn, produced poor results. There was no quality control around their work, the results and their reporting. The number of DSPs actually went up and Centrelink Psychologists still had the lowest number of DSP approvals. The cost cutting exercise ended up costing the Government more and they ceased the external provider contracts.
Whilst the internal process of job capacity assessments has evolved (phone interviews, medical reports, assessments) alongside the job impairment table, Centrelink do not take self-reporting as the sole source of evidence on which to base their decisions. There is also a quality framework in place where reports are audited and an ongoing audit schedule has been introduced.
Based on this historical case study from a government program it is clear that little has been learned and generalised to the IA approach.

3. The human and financial resources needed to effectively implement IAs;

The perception within the sector is that IA’s are being driven for an economic benefit as opposed to what is in the best interest of the participant. The disability sector is already under immense

pressure due to significant shortages in the workforce. Appointing organisations who have limited exposure and understanding of disability in a one size fits all model may in fact increase costs of the scheme, due to the human resources required to manage complaints and appeals.

Given a large percentage of participants have completed numerous assessments with qualified and skilled disability practitioners prior to, or throughout, access to the scheme, the cost of additional assessments will be significant - if existing assessments will not be considered as part of this process.
Based on the volume of assessments that will be required to be completed, as well as the internal management by assessment organisations and the NDIS, it is anticipated that this system will add enormous costs and administration to the NDIS.
There are concerns that IA’s may delay access to the NDIS scheme that could significantly impact participants receiving timely and needed supports
It is also anticipated that by removing participants choice and control, a foundation pillar of the NDIS, it will have lasting and negative impacts on all participants moving forward and will reduce participant access to the scheme who have seen great benefit over the last 8 years.

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

As stated above, there are concerns that assessors will not be independent if their organisations are funded by the NDIS and they operate under the guidelines set by the NDIS. It might also be assumed that the successful providers provided the lowest cost for an assessment and stated they could deliver the greatest number of assessments over a set period of time. Given the successful organisations have limited expertise in disability and employ limited numbers of skilled clinicians, a strong quality assurance framework and transparent auditing structure must be in place.
Given the NDIS historically stated they had secured Local Area Coordinators and NDIS Planners with an array of experience both in disability expertise and lived experience, which did not eventuate, it is clear that these key skills were not considered when appointing IA Providers who have limited disability specific skills.
It can be assumed that highly experienced practitioners will not be interested in this work as it will not meet their professional needs and aspirations given the nature of one-off assessments, therefore assessors will likely have limited practical experience and exposure to disabilities and assessments tools. With limited experience and knowledge, the ethics of assessors may be questionable and their ability to successfully implement a one-off assessment will have negative impacts on participants with disabilities and their long-term quality of life.
We strongly recommend that the NDIS trial period be extended to a more diverse range of participants in both metropolitan and regional areas, to ensure appropriate processes are in place before it is rolled out nationally.
If IAs go ahead it will be essential to conduct regular independent audits, which should include:
- Observations of assessors completing IAs with participants
- Interviews with assessors regarding the assessment tools and processes to seek their feedback and identify and address concerns
- Interviews with participants and their support networks to gain feedback on the process, and to discuss whether the amount of funding allocated as a result of the assessment met their functional needs

Participants will need to know that the feedback they provide will not impact on their funding as some participants may be concerned to provide feedback otherwise.
All assessors should:
- Have access to quality support and supervision through senior practitioners.
- Have access to regular training opportunities as well as on floor coaching during assessments with experienced senior practitioners.
- Know who they can provide feedback to on how the assessments are going, especially when they have concerns
All participants should have the opportunity, after 12 months of utilising supports through an NDIS plan, to speak with someone from the Agency about whether the funding allocation based on the assessment met their functional needs. Participants should be given flexibility in the way that assessment results are provided to them, however we would suggest the below is best practice:
- Face to face verbal feedback to participants and support networks (as required).
- After face to face feedback, written feedback should also be provided in a way that the participant and their support networks can understand.
- Participants should be given the opportunity to ask questions during face to face feedback, but also after these meetings have concluded when they have had time to process and reflect on the information that has been provided to them.
- Results should be provided within a functional context that is meaningful for the participant, not just a score or “stock standard” response.
- Follow up support should be provided by the agency to check in on participant’s wellbeing after receiving the results.
- All results should be presented in a way that meets the participant’s individual needs. For example, in Easy English and with visual supports.
We believe an independent assessor should:
- Be a qualified allied health professional- e.g. Occupational Therapists, Speech Pathologists, Psychologists and potentially mental-health trained Social Workers
- Have experience in the disability sector
- Have experience administering, interpreting and discussing outcomes of functional assessments, as well as having the skill to incorporate the information gained from the standardised tools with the information provided by the participant and their carers and involved health professionals, to get a full overview of that person’s abilities across settings, and over time (not just in their home on one day).
- Have knowledge of, and experience, working with specific disabilities which may impact the individual they are assessing
- Be personable, friendly and able to build rapport easily and quickly
- Be able to respond appropriately to participants and family members during assessments
- Be professional
- Be non-judgemental

Have knowledge and experience working with diverse communities including Aboriginal communities, Culturally and Linguistically Diverse populations, and LGBTQIA+ individuals, and be open and considerate to their preferences and needs.
Have experience working in trauma informed practice to support their decisions around exemptions
Be truly independent – whilst they are independent assessors they are being paid by the agency to conduct assessments
Understand the NDIS and the supports that individuals can access to support their functional needs (e.g. AAC)

5. The appropriateness of the assessment tools selected for use in IAs to determine plan funding;

Given the complexity of disability and the tools selected being diagnosis-neutral there is significant concern that a one size fits all, tick and flick assessment, is a regressive approach. The assessment tools, which in some cases contain lengthy and intrusive questions, and the fact that assessors have no relationship with the participant or historical knowledge of the participant, may lead to the assessment being a traumatic experience for many participants. There is limited contextual knowledge provided in the assessment and reduced assessors skills and knowledge will mean they are incapable of further probing participants to obtain a holistic view.
While the implementation of a tailored IAs approach for young children could support consistent access and planning decisions, Aspect does not support the use of the PEDI-CAT (Speedy) or PEDI-CAT ASD (Speedy) as tools that can adequately support consistent access and planning decisions. The Ages and Stages Questionnaire is more suited to monitoring development than identifying functional capacity. The Vineland 3 is more comprehensive but again is best used as part of an assessment process that also involves observations and collaboration with those who know the child best (e.g. those who have provided ongoing support as well as parents).
Participants on the autism spectrum do not follow a linear developmental trajectory and a snap-shot, one-off assessment may not identify all challenges impacting on a participant and certainly does not identify the impact on the family/carers and support networks. There can be periods of regression and performance can be very different in different environments.
Participants on the autism spectrum may physically be able to do a task, but need additional supports and prompts to do the task independently, consistently, or in different environments.
The tools proposed for IA’s are very deficit focused and place the burden on the participant/parent /support team to emphasise what the participant cannot do, as opposed to what they could do if given appropriate support. Some of the tools (e.g. Vineland 3 Comprehensive version) are lengthy and very emotionally draining for participant/parents to complete and should not be repeated as part of an IA if that assessment (or a similar functional assessment) has already been recently completed.
The person conducting the IA would also need to be experienced in administering and interpreting the results of the tools and have experience and knowledge about early intervention/disability – to enable them to incorporate information gathered from the tools with information provided by the parents in order to make appropriate decisions about that child’s support needs. It is unclear what training/experience the independent assessors will have and how their decision making around plan budgets will ensure that the child/families support needs are met.
IAs should include information not just from participants/parents/caregivers, but should also take into consideration information and recommendations from any involved health professionals about the appropriate support needed for that participant. While acknowledging that part of the purpose of

the IA is to remove the need for participants/families to gather reports from specialists/health professionals to meet eligibility requirements which can create significant financial cost for families, if there are health professionals currently working with the participant/family that can provide information and recommendations as to the most appropriate supports, this should be included in the decision making around planning/budgets following the IA.

Aspect is concerned that the level of functioning as identified in a one-off assessment does not equate to level of need for funding, just as diagnostic levels in autism do not equate to level of need for funding. Levels of informal supports also impact and it is also important to consider which domains are impacted as an assessment may not adequately assess all areas.

6. The implications of IAs for access to and eligibility for the NDIS;

Whilst access lists were somewhat problematic, as automatic access to the scheme was determined by diagnosis and level of diagnosis, which does not always match a participant’s level of functional needs, it does make it clear what is needed to meet eligibility to the scheme.
Participants could also choose to access assessments and seek information from professionals with whom they already had built trust and rapport. These health professionals, with specific training, experience and expertise are best placed to understand their specific needs and how these impact on their daily functioning.
It is clear that the agency is trying to create a more equitable process by providing IAs, where participants no longer need to seek out their own assessments, which can be costly and involve long wait times; however, we have significant concerns around the validity of an IA completed by someone who does not know the individual and who will take a snapshot in a short assessment on a particular day. We also have concerns that the independent assessors would make a judgement about an individual’s functioning and level of support required without listening to, and including in their assessment, information from the health professionals currently supporting the individual, who have expertise working with people with that disability/support needs and are familiar with the evidence based supports that will help that individual to participate in their valued activities and to build their skills towards identified goals.
Individuals (and their carers/support networks) may not be able to advocate for themselves around the level of support they need across settings and the type of and amount of intervention that will best support them to meet their goals – this is where information from treating professionals is essential in order to determine an appropriate level of funding in their plan.
The removal of access lists will also not remove the need to seek assessment and documentation from relevant health practitioners around diagnosis and disability to prove their eligibility for an IA. Participants may still be faced with long wait times, especially if going through the public health system and high costs if they choose a private practitioner to enable them to be seen quicker. This will most likely still lend itself to inequities across participants.

necessary supports;

It is also not clear how the results equate to the level of funding to support participant goals. There are many variables and, in an attempt, to create a fair process, it will come down to how the participant can answer the questions and whether they have a support network to assist and advocate on their behalf. Ideally, funding should be available for participants to access assessments through providers of their choice, who already have a relationship with them.

8. The circumstances in which a person may not be required to complete an IA

It will be important to consider the below scenarios when determining who can be exempt from an IA:
- DSM-5 and accompanying reports indicate sufficient evidence is available and no IA is required.

Someone who has a background of trauma, where an assessment may cause them increased distress.
When there is a risk to the participant’s or Assessor’s safety for example if the individual presents with significant behaviours of concern.
A participant who is actively psychotic.
A participant who has a severe intellectual delay and has limited or no access to a support person who knows them really well.
A participant who has no insight into their abilities and challenges and who has limited or no access to a support person who knows them well.
Individuals who have suffered traumatic injuries who may find a functional assessment confronting due to their recent change in level of functioning.
Individuals who have had functional assessments completed by other professionals recently. For example, the Vineland can be a confronting assessment by the nature of the questions if administered in close succession.

9. Opportunities to review or challenge the outcomes of IAs;

There should be a number of avenues for participants and their carer/families and support networks to challenge the IA outcome. This should be simple and transparent. It is essential individuals who challenge outcomes are not communicated with via automated messages and that case managers are in place to guide the steps for review and challenge. There should be a strict time frame and challenges should be resolved quickly to ensure participants are not without service during this process. There may be a need to implement an interim plan of supports whilst a review or challenge outcome is pending.

10. The appropriateness of IAs 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;

When contacting participants, the Agency or Assessors should also be asking participants if there is anything that needs to be considered from a cultural perspective to ensure they can participate as in the assessment in a culturally safe environment.

Some other things to consider are:

Independent assessors should have to undergo mandatory cultural training to ensure they have a basic understanding of cultural differences.
Giving participants a choice around the type of assessor they have. For example, gender or cultural background.
Access to translators who have knowledge of disability, the NDIS and assessment processes.
Flexibility around day/time of assessment so it does not impede on cultural or religious events and or practices

11. The appropriateness of IAs for people with particular disability types, including psychosocial

disability; and

The assessment tools selected are not targeted for psychosocial disability and do not take into consideration the fluctuating presentation of psychosocial disabilities. A one-off snap shot

assessment is highly unlikely to provide accurate information about a person’s level of psychosocial disability and the amount of support that they require.

One questionnaire cannot adequately capture the different skills and deficits of people with psychosocial disability, as the nature of the presenting problems can vary significantly.
A one size fits all approach is not appropriate in the area of psychosocial disability.
Individuals with psychosocial disability may present in a state of distress and with self-harm or suicidal thoughts. There are questions about the ability of the Assessors to manage these concerns and the risks associated with them.
Assessors will need to be adequately trained in the areas of safeguarding, mandatory reporting, and NDIS Quality and Safeguarding Commission reporting to ensure that they are operating in a manner that protects participants.

Aspect welcomes this review, but fears despite the opportunity for feedback, it will not be taken into consideration and IAs will commence regardless of the number of type of concerns raised. Aspect also believes the implementation is detrimental and in opposition to the purpose to the NDIS.

Greater collaboration is required with the sector and the NDIA needs to capture the participants voice and ensure co-production of IAs. The NDIA has historically based its principles on giving participants/families/carers and support networks choice and control and now is removing this important quality of life which leads to better inclusion outcomes.