Independent Assessments
Submission 320
to whom it may concern,
i am an occupational therapist with 12 years post graduate experience. i am currently working with participants on the ndis who have autism spectrum disorder and psychosocial disability. i am extremely concerned regarding the impact that the proposed reforms to the ndis will have on individuals with a disability. i do not agree that an “independent assessment” paid for by the ndis, which will be completed in approximately 3 hours by an allied health professional who the participant has only just met, who may or may not have the correct skillset to assess the participant, using a checkbox tool which was not designed for this purpose, will have “fairer” outcomes for individuals with a disability. please see below for information regarding some of the specific concerns I have about the introduction of independent assessments.
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. The proposed changes to the ndis, in particular the inclusion of independent assessments have not been made in consultation with people with disabilities. obtaining feedback from 145 people who completed the pilot study is not representative of the 400 000 individuals on the scheme. The fact that the tender for independent assessments was released prior to the consultation process highlights that the voices of individuals with a disability and the people who support them have not been heard or considered. more than 20 disability representatives and numerous professional bodies oppose the introduction of independent assessments. i believe the proposed changes are in breach of the rights of persons’ with a disability and the national disability strategy.
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). the individuals I work with have complex mental health issues and have already expressed concern regarding independent assessments. they are concerned about being assessed by someone they don’t know, in particular having to share personal information with a stranger. They are concerned that they do not understand the questions they are being asked and that if they “get it wrong” that funding will be reduced/withdrawn.
i have concerns regarding the proposed assessment toolkit that independent assessors will be using. These assessment tools lack construct validity. Construct validity is the ability of the tool to actually measure what it is intended to measure. The construct being measured with vineland 3 and chief are adaptive behaviour and environmental factors respectively, not functional capacity (which is what the independent assessors have been tasked to assess). there is also 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.
when conducting assessments there are a variety of factors that i consider which form the basis of my recommendations. while I use standardised assessments they only form part of the picture when determining a person’s support needs. for example, the proposed assessment tools do not answer the following questions:
- is the individual able to advocate for self in relation to support needs?
- can the individual manage menstruation?
- can the individual use contraception effectively?
- does the individual understand the concept of sexual consent?
- is the individual able to communicate that they do not consent to sex?
- can the individual use Mygov without support?
- Is the individual aware of the importance of internet passwords and not sharing these?
Submission 320
- Is the individual sensitive to bright light and avoids shops due to this?
- Is the individual sensitive to sounds and avoids situations with loud sounds?
- Does the individual have flashbacks when they hear sirens when they are out?
- Is the individual able to access charities if they run out of food?
- Is the individual able to find their way home when lost?
- Is the individual able to use a mobile phone to navigate when lost?
- Is the individual able to use an ATM whilst protecting private information on card and pin?
- Is the individual able to maintain attention while preparing meals to ensure their safety (e.g. not becoming distracted and leaving the stove unattended)?
- Is the individual able to respond to a fire alarm?
- Is the individual able to say no to a person who wants them to loan money?
- Is the individual able to read a legal document?
- Is the individual able to source legal aid if required?
In addition to the proposed toolkit being inadequate for the purpose of actually assessing a person’s functional capacity, many of my clients do not have the cognitive capacity to understand the questions on the proposed assessment tools. For example, I asked a client who has autism and chronic fatigue syndrome how much difficulty they have with showering (a question on the WHODAS 2.0) and they said “some difficulty”. I followed this up with the question how often do you shower? (this question is not on the assessment tool). My client stated “I try to shower once a week but often go weeks without showering due to my fatigue”. I asked them why they said they only have some difficulty with showering and their answer was “when I have the energy to shower I only have some difficulty”. This demonstrates that the proposed assessment tools are not suitable for individuals with reduced cognitive capacity. It also demonstrates the need for individuals to be assessed by experienced health professionals working within their scope of practice to ensure thorough and accurate information is obtained when determining a person’s support needs. An inexperienced health professional may not clarify the answers to the questions they ask to ensure they are obtaining accurate answers. For example, a physio therapist who is not trained in working with people with psychosocial disability may have taken my client’s answers at face value (and scored them “some difficulty”). This would likely result in my client receiving inadequate funding to obtain support for assistance with showering.
Not only am I concerned about the impact of Independent Assessments for my NDIS client’s, I am also concerned for my 9 year old daughter who is an NDIS participant with a diagnosis of autism spectrum disorder and anxiety. I honestly cannot fathom that in order to receive the support that she requires, my daughter will have to sit through assessments with people she does not know and be observed carrying out a task that she may not want to perform. Changes to routine, meeting new people and being asked questions she does not understand will only increase her anxiety. This has been highlighted by her support team and even her school has put in place strategies to ensure that she is supported by people she knows. For example, she has had the same teacher 2 years in a row to limit transitions between teachers and she has a support aid who remains a constant support if she has a relief teacher. We have spent countless hours helping her to build trust with her treating health professionals who are very well placed to make recommendations regarding her support needs. I do not believe that a child should be subjected to circumstances which will cause them distress to ensure they continue to receive the support they require. The previous LAC’s were happy to talk to me and rely on her health professionals reports which avoided exposing my daughter to unnecessary harmful observations and assessments. I am well aware that changes need to be made to the NDIS to ensure equity of access and support but Independent assessments are not the answer.
Thank you for the opportunity to provide this submission. I do hope that the NDIA reconsiders the introduction of Independent Assessments and works with individuals with disability, their carer’s and the disability sector to find solutions to the issues relating to access and equity of supports.
Regards
Occupational Therapist
References
The following references were used:
-
Barr, B; Taylor-Robinson, D; Stuckler, D; Loopstra, R; Reeves, A. (2015). ‘First, do no harm’: are disability assessments associated with adverse trends in mental health? A longitudinal ecological study. Journal of Epidemiology and Community Health Vol 70 (4). BMJ Publishing Group Ltd.
-
Department of Social Services (2010) National Disability Strategy 2010–2020.
-
Madden et al (2015) In search of an integrative measure of functioning. https://pubmed.ncbi.nlm.nih.gov/26016438.
-
NDIS (2020) The Independent Assessment Pilot. Retrieved September 18th, 2020. [https://www.ndis.gov.au/participants/reviewing-your-plan-and goals/preparing-your-\ planreview/independent-assessment-pilot-iap]
-
United Nations General Assembly (2007) Convention on the Rights of Persons with Disabilities. Geneva, 2007.