AMPARO Advocacy Inc
JOINT STANDING COMMITTEE ON THE NATIONAL DISABILITY INSURANCE SCHEME 7 April 2021
INDEPENDENT ASSESSMENTS
1
Independent Assessments Submission 269
Introduction
AMPARO Advocacy is a small non-profit community based organisation which provides independent, individual and systemic advocacy with and on behalf of vulnerable people from culturally and linguistically diverse backgrounds (CALD) with disability. We welcome this opportunity to provide feedback to the Joint Standing Committee in relation to NDIS Planning.
AMPARO Advocacy (AMPARO) is a small non-profit community based organisation which provides independent individual and systemic advocacy, with and on behalf of vulnerable people from culturally and linguistically diverse backgrounds (CALD) with disability. AMPARO is funded by the Queensland State Government Department of Seniors, Disability Services and Aboriginal and Torres Strait Islanders Partnerships and governed by a voluntary management committee the majority of whom are people from a CALD background with disability. AMPARO is well respected across the multicultural and disability sectors as the only organisation in Queensland that specifically works to protect the human rights and wellbeing of vulnerable Queenslanders from CALD backgrounds with disability and has done so since 2004.
AMPARO’s independent individual advocacy addresses serious issues of social and economic isolation, unfair treatment and discrimination and represents those who are least able to defend their own rights and interests so their fundamental needs are met and they can actively participate, engage and contribute to family and community life.
The majority of individuals that AMPARO works with are from a refugee background and permanent Australian residents, who are experiencing multiple and complex layers of disadvantage and often missing out on accessing essential mainstream services and specialist disability services, including the NDIS, to the levels that they should be. They are often marginalized, and isolated from their own communities and have fallen through the gaps.
Through our work with individuals and their families we become aware of the additional barriers and systemic failures that restrict this cohort’s access to important information and services and limit their ability to fully participate and be included in family and community life. The systemic advocacy that is undertaken by AMPARO aims to influence positive sustainable changes to attitudes, policies, practices and resources within governments and community to address issues of systemic inequality. AMPARO shares our understanding of the life experiences of people from CALD backgrounds with disability with the Joint Standing Committee to increase understanding of the particular issues this cohort experience and to raise our concerns with the NDIA’s intention to introduce independent assessments for all NDIS Participants.
Since January 2018 AMPARO has provided independent advocacy and intensive support to Queenslanders from CALD backgrounds with disability to effectively access and participate in the NDIS in the Brisbane, Logan and Strathpine areas. In addition to this AMPARO has received additional project funding via State and Federal programs, to seek out and identify people from CALD backgrounds with disability who are not aware of the NDIS and require intensive support to effectively access and participate in the scheme. This includes funding for 11 months under the National Community Connector Program which we are advised will NOT be extended beyond 30 June. This is despite the latest NDIS Quarterly Report for December 20201:
- Nationally, 9.3% of participants are from CALD backgrounds, while research has found that this should be closer to 29%2.
1 National Disability Insurance Agency (2020), NDIS Quarterly Report to disability ministers, 31 December 2020, p. 97 2 Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (2020), Culturally and linguistically diverse engagement principles, June 2020, p. 8
2
Independent Assessments Submission 269
- In Queensland, only 5.5% of participants are from CALD backgrounds3, however ABS data suggests this should be closer to 15%4.
AMPARO has witnessed the enormous difference the NDIS can make in people’s lives when they are well supported to access, navigate, and participate in this complex system of support. Unfortunately more often than not the intensive support that is necessary to ensure equitable access and participation by this cohort is not available.
However, AMPARO is concerned about many aspects of the proposed introduction of mandatory independent assessments and believes these changes may add to the complexity of a system that is already extremely difficult for many people from CALD backgrounds with disability to navigate. The following information highlights key concerns regarding the planned implementation of mandatory independent functional assessments for all prospective NDIS participants, but does not address the full terms of reference of this Inquiry.
The introduction of Independent Assessments - Reasons and justification
Government Services Minister Stuart Robert, previously responsible for the NDIS cites the Recommendations from the Review of the NDIS Act 2013, or ‘Tune Review’ (Review), and as justification for implementing mandatory independent functional assessments.
Whilst the ‘Tune Review’ did not recommend that functional assessments be ‘mandatory’, it did state that these changes would require ‘extensive consultation with participants, the disability sector, service providers and the NDIA workforce’.
The NDIA and the Federal Government however have failed to undertake real engagement and respectful and genuine consultation with people with disability on this significant proposed change and that is obvious by the depth of concern being expressed by people with disability, their families and across the sector.
The Review suggested key protections for participants including:
- Giving participants the right to challenge the results of the functional capacity assessment, including the ability to undertake a second assessment if unsatisfied with the assessment.
- Ensuring participants could choose which NDIA – approved provider to conduct their assessment and not unduly limiting the panel of providers to undertake these assessments as this could lead to disengagement by some people with disability.
A major risk identified by the Tune Review for some cohorts, including people from CALD backgrounds, was that if not comfortable or willing to engage with the NDIA-approved providers on offer, prospective participants could disengage altogether with the NDIS system as a whole. For this reason the Review advised engagement issues should be monitored and that the NDIA should “actively engage with participants and the market to ensure the availability of appropriate providers of functional capacity assessments”.
AMPARO finds that many people from CALD backgrounds with disability find accessing functional assessments to support their NDIS Access Requests extremely difficult due to:
- Lack of knowledge of appropriate practitioners who undertake functional assessments.
- Difficulty contacting practitioners due to language barriers.
- Financial costs in obtaining a functional assessment by a private practitioner.
3 National Disability Insurance Agency (2020), NDIS Quarterly Report to disability ministers, p. 248 4 ABS (2016), cited in AMPARO Advocacy Inc. (2020), Submission to the Inquiry into the NDIS Market in Queensland, 13 August 2020, p. 2
3
Independent Assessments Submission 269
- Long waits in the public health system.
Access to a free functional capacity assessment by a culturally competent practitioner, conducting the assessment in the person’s home or place of choice, with the assistance of a certified interpreter of their choice, could address the financial costs and long waiting times in the public system.
AMPARO’s experience is that many allied health professionals have limited or no experience, in working with people from CALD backgrounds with disability and even less experience in working with refugees with disability. They therefore have often no expertise in conducting culturally appropriate and valid assessments of functional capacity for this highly disadvantaged group of prospective participants.
The added complexity of engaging a certified interpreter to conduct the assessment will present challenges for those practitioners with little experience in this area and highlights the need for adequate recruitment of culturally competent assessors.
Individuals with disability who have a relationship with a practitioner they feel more comfortable with or already know and trust, who understands their impairment, who speaks their language or has experience in working well with certified interpreters to ensure effective communication, must be an option for all participants.
A fundamental tenant of the NDIS is ‘choice and control’ for individuals with disability and therefore individuals MUST be able to choose this as an option.
Recommendation:
- Independent assessments should only be introduced as an option for prospective participants.
- Require agencies providing independent assessments to target and recruit culturally competent and experienced allied health professionals and deliver appropriate training to upskill existing practitioners.
- Assessors must have unlimited access to engage certified interpreters for communications with participants from non-English speaking backgrounds.
Evident of Disability Still Necessary and a Major Barrier
Unfortunately, under the proposed changes, the need for potential Participants to provide evidence of their disability, including whether their impairment is or likely to be permanent, will remain a major barrier to NDIS access.
This requirement is particularly difficult for those from new and emerging communities and refugee backgrounds, as they often do not have a diagnosis of disability and require expensive appointments with specialists, such as psychiatrists, paediatricians, neurologists or clinical psychologists, to undergo assessments to receive a diagnoses of their impairment and disability. Lengthy wait times in the public system, often many years, and the prohibitive cost of private specialists, will continue to prevent people from CALD backgrounds making successful access requests.
Suggestions of ‘Sympathy Bias’ versus Trust and Rapport
Addressing the potential for ‘sympathy bias’ during assessments has been cited by the NDIA as some justification for the introduction of mandatory assessments. However, the NDIA provides limited evidence of the negative impact of ‘sympathy bias’. There is an expectation that allied health professionals adhere to a National Code of Conduct and are often members of other regulatory bodies, such as the Australian Health Practitioner Regulation Agency (AHPRA), this should provide confidence that allied health professionals work to limit ‘sympathy bias’. Certainly, sympathy bias does not justify making independent assessments a mandatory requirement.
4
Independent Assessments Submission 269
In fact it can be critical for many people with disability, particularly those who may have experienced previous trauma, to develop trust and rapport with a practitioner and to feel safe before being able to respond to questions and participate fully in assessment processes. Many people that AMPARO works with have experienced significant trauma prior to coming to Australia as refugees, including persecution, stigma and neglect. There are concerns that agencies that have successfully tendered to *“ensure competitive pricing”*5 to implement the independent assessments, may not encourage and support assessors to take the necessary time to develop rapport and trust with individuals and of course to adjust their assessment processes to include the additional time needed when engaging an interpreter in the process.
Furthermore many people with impaired capacity will require the support of people who know them well to participate in the assessment process and to communicate their needs. However, AMPARO finds that when people do not understand what supports are available from systems such as the NDIS or know what a good life for a person with disability can look like, they often struggle in planning meetings to articulate their needs. As a result, they routinely receive inadequate NDIS plans with limited or no Support Coordination, with levels of support much lower than their peers, that cannot meet their needs.
Standardised Independent Assessments
The use of standardised assessment tools and approaches may not consider the cultural context, including beliefs, values, language, and literacy of the person, nor adequately adjust for previous trauma and other life experiences.
The ability to engage and work well with certified interpreters that are considered ‘trustworthy’ by participants and their families, and for assessors to be culturally competent, is of immense importance for a practitioner to conduct a valid functional assessment.
The additional complexity of using standardised assessment tools on CALD populations where the outcome can mean the difference between receiving good support under the NDIS to possibly not being eligible for any NDIS support, make this a high risk assessment process.
According to a report by QCOSS6:
- Practitioners preparing clinical assessments and reports require proven competence working in cross-cultural contexts.
- Clinical assessments are more complex when an interpreter is involved.
- In the absence of appropriate assessment tools, the practitioner may require more time to gather and analyse information about the lived experience and circumstances of the individual from family members.
The literature also shows that peer comparison with children from similar experiential and linguistic backgrounds can also be beneficial when conducting assessment involving children from CALD and refugee background.
Expertise of assessors
AMPARO’s advocates have worked with many different OTs and other therapists over the years and their capacity to relate to people from CALD backgrounds and the quality of their reports have varied enormously. There is no reason to believe that assessors will be any different. As the foundation stone of the NDIS planning and budgeting process it is therefore vital that people have the chance to respond to assessments and where they believe that they are not accurate to have a review or a second assessment if necessary.
5 NDIA (2021) NDIA Independent Assessments FAQs 6 QCOSS (2015) Dealing with cross cultural issues and bias in the courts. Queensland Council of Social Services.
5
Independent Assessments Submission 269
- Respect for and understanding cultural diversity and how culture impacts on people’s views of disability, support needs and family expectations and responsibility – and how these can vary between generations.
- Access to preferred interpreters, if requested is essential if assessments are to be accurate and comprehensive. People will not talk about highly personal information with an interpreter who is: a community member they do not trust / who is the wrong gender / who speaks the wrong dialect/ who is from an opposing community or perhaps the same small community / or who is an extended family member etc
Recommendation:
- Review assessment tools and processes to ensure they are relevant cross-culturally and reflect best practice approaches.
- Participants must have the right to ask for a review of the outcome of an independent assessment.
- Participants can request their preferred interpreter for the assessment process.
Assessment processes will determine the person’s NDIS plan and budget.
The Tune Review acknowledges that people with disability are the experts in their own lives and that maximising choice and control over the supports they need to achieve their goals and aspirations is essential.
Under these changes, it is the outcome of the independent assessment that will determine the allocated budget. The assessment tools however are not designed to understand nor consider the unique likes, interests, aspirations and goals the individual wishes to pursue to have a life that brings meaning and purpose, that previously was discussed in planning meetings and influenced final budget allocation. This will no longer be the case, a person’s goals are no longer important in determining the level of funding allocated and this is a concern.
4.17 The general principles at section 4 of the NDIS Act reinforce that the objectives of the NDIS are to place individualisation at the heart of planning and maximise a participant’s ability to exercise choice and control over the disability supports they need to achieve their goals and aspirations. The principles also reinforce that people with disability should be supported in all their dealings and communications with the NDIA to ensure their capacity to exercise informed choice and control is maximised7.
Recommendation:
- Participant’s aspirations and goals must be included when considering reasonable and necessary supports in a person’s planning meeting. With the planners being able to increase the budget accordingly.
- Participants should automatically receive a full copy of the assessment report without having to request this, as individuals from CALD backgrounds are less likely to be informed appropriately about these changes and know this is an option. They are also likely to need assistance to make such a request.
- Participants should be offered a translated report during the assessment process and provided one in their preferred language, in a timely manner if needed. Participants will often not know to ask for this.
7 David Tune AO PSM (December 2019) Review of the National Disability Insurance Scheme Act 2013.
6
Independent Assessments Submission 269
Other important traits and skills in an assessor
Current experience is that not all allied health professionals have the necessary and practical skills in eliciting accurate information from individuals with disability when conducting assessments. Some examples of this can be:
- Assessors can be unaware that some people with disability may be reluctant to acknowledge where they need support or what they cannot do and can present themselves as more capable than they are. This can be a general trait among most of us, sometimes for cultural reasons this is more significant.
- Assessors need to be good at making sensitive enquires until they have an accurate and full picture of the person’s capacity across all life domains and understand their needs for support. During one assessment the planner asked a participant ‘do you have friends?’, to which the participant responded ‘yes’, a difficult question to say ‘no’ to. If they had explored this further, they may have understood that the young man’s one friend left town 2 years earlier. Fortunately, the advocate was present and able to intervene and support further enquires around several areas to ensure the assessor developed a full and accurate picture of the person’s functional capacity. The obvious need to ask open questions, so as not to elicit yes and no answer is not always understood and shows a lack of basic skills in conducting assessments.
- Assessors also need to take into consideration the disabilities the person experiences and not only the ‘primary or most obvious disability’, and refrain from making assumptions about the cause of reduced capacity. For example, one person with physical and psychosocial disability with reduced capacity to access and participate in community activities had this attributed to their physical disability. However further questioning around their history and life experiences showed the person to be impacted by significant and permanent mental health issues due to long term trauma.
AMPARO is concerned that independent assessors may not understand the need for CALD participants with complex needs, to have access to appropriate levels of Support Coordination to implement their NDIS plans. Local area coordinators may be better placed than assessors to allocate adequate levels of Support Coordination as part of the planning process when discussing how the plan can be implemented.
This decisions around levels of support coordination should be informed by several factors including: a good understanding of the person and / or their family’s knowledge of disability in the Australian context, literacy levels, English proficiency, knowledge of local services and allied health therapists and benefits of their services, ability to engage with services, and use the internet.
The limited support ECEI / LACs can provide now is too often inadequate for people from CALD backgrounds with disability and their families to effectively implement their plans.
AMPARO Advocacy appreciates this opportunity to provide a submission and recommendations to this inquiry by Joint Standing Committee and to add to the discussion on the risks and benefits of the proposed introduction of mandatory functional assessments for all prospective NDIS participants.
Yours sincerely
Maureen Fordyce Manager AMPARO Advocacy Inc.
7