PAXTON, Associate Professor Georgia, Member, Refugee Health Network of Australia [by audio link]

SACKEY, Ms Donata, Member, Refugee Health Network of Australia

CHAIR: I now welcome representatives from the Refugee Health Network of Australia. Thank you for appearing before the committee today. Do you have any comments to make on the capacity in which you appear?

Ms Sackey : I'm a member of Refugee Health Network Queensland, and I'm also the director of Mater Refugee Health.

Prof. Paxton : I'm a consultant paediatrician working at the Royal Children's Hospital in Melbourne.

CHAIR: Thank you for your submission. Would you like to make some opening comments?

Ms Sackey : I might let Georgia start, and then I'll follow.

Prof. Paxton : Thank you very much for the opportunity to attend today. The view of the Refugee Health Network of Australia is that independent assessments could be a valuable mechanism to ensure that the NDIS scheme is equitable and accessible to all. However, we regard that it is essential to ensure that the independent assessment process does not perpetuate inequities. Underpinning this is that, in the current format we see a lot of inequity in the NDIS. The scheme essentially relies on an individual's or a carer's ability to access and navigate pathways for assessment and therapy. Access is easier for people who speak English or those who know the health service system, so people or carers who have higher levels of education or health literacy or go to a strong advocate. This extends to people in stable living arrangements and individuals who do not experience significant disadvantage.

Conversely, NDIS access is difficult for people without English proficiency, who don't know the health service system, who may not have had access to education or have different [inaudible] and people who find it more difficult to advocate for themselves, particularly those children and adults who do face comparative disadvantage.

There are additional barriers to accessing NDIS for people of refugee background, including health access barriers. This might be English language proficiency [inaudible] different health literacy and cultural explanatory models and not having prior experience with or knowledge of the Australian system. There are also system-level barriers whereby health providers might not have background experience or knowledge of the implications of forced migration or the cultural communities they are working with. There may be limited access to interpreters, which particularly applies to allied health professionals. There are long waiting lists in the public health service system and generally a lack of access to the private system for people of refugee backgrounds.

One of the major considerations for our population cohorts is that [inaudible] the NDIS is based upon diagnosis. A new refugee arrival or other migrant arrival with disability will not have a formal diagnosis within the Australian system, which complicates and delays their access to NDIS. There are long waits for diagnostic assessment, particularly for adults. To some extent, access to the NDIS is predicated on a [inaudible] of diagnosis. I am a paediatrician and there is, to some extent, an assumption that children will present with developmental delays and go on to receive a formal diagnosis which will be available at the point they enter the NDIS system or if an adult develops an acquired injury or disability this is also assessed within the healthcare system, which enhances access to NDIS.

There are already substantial barriers to refugee-background participants accessing NDIS, and our concern is that independent assessments should not become an additional barrier. We understand that there is lower than expected participation of CALD communities in the NDIS and, whilst we are a nation with a high proportion of overseas born people and people speaking a language other than English at home, certainly the pilot stages of the NDIS show low participation by CALD communities and current data also suggests that they are underrepresented. It's not clear how these discrepancies are being addressed. Whilst there is a CALD strategy, this has not been updated over the last three years and it's not clear what implementation is planned.

Ms Sackey : When we are looking specifically at the independent assessment framework that's being proposed, there are a couple of equity and access issues that we would like to particularly highlight—in particular, the risks of what the free market approach may mean for this particular cohort. In terms of the five key elements, language services is certainly one of the ones we are concerned about. At the moment, it's not clear if core participants who require language support services have been included in the pilot phase and whether especially people who are new to the NDIS have been included in that pilot.

There's also a need to look at access to funding for accredited interpreters and the fact that most allied health professionals to date have not had access to the free interpreting and therefore their awareness of engaging of interpreters has not been as high. So training is going to be really important.

There's also an increased time allocation requirement that may not have been considered—that is that three hours is effectively one-and-a-half hours if you are engaging with an interpreter, because everything takes twice as long. There is also not any translated information that we can see at the moment on the independent assessment framework process. There's also a need to consider language literacy—not everything can be translated, but audio and video are also required for our cohort.

Secondly, there's a need to be more culturally appropriate and culturally safe in the assessments in the formulation, which requires additional training and, more importantly, experience in cross-cultural care. So we suggest a more proactive approach diversifying the workforce and commissioning through those arrangements for that more diverse workforce. A one-off functional assessment should not be offered as having any greater weight than a comprehensive assessment by a more longer-term and trusted, independent health provider. We suggest effective use of independent collateral information to enrich the independent functional assessment. People who come from overseas under the Humanitarian Program do have access to some assessments offshore which we would recommend should be incorporated. But also any other assessments which have been conducted since their arrival should be considered as part of the independent assessment.

The presence of a trusted person, including perhaps a bicultural worker, should also be considered. The assessments tools are potentially not highly reliable. Cross-cultural validity of those tools hasn't necessarily been tested and will need to be utilised with an interpreter for a large proportion of our cohort, and we need to consider that when translating those tools. It could also be useful as a safety net for most vulnerable people to have access to the independent assessment, but these gaps in diagnostic assessment and provisional assessments and allocation of funding to complete the assessments are needed to link up with other services.

Thirdly, the proposition that independent assessments are non-reviewable is not appropriate and will impact assurance and governance. In the current framework, it's not reviewable practice, and the proposed assessments have not been, as we said earlier, validated across language and culture and with the use of interpreters. Therefore, the lack of review prevents a quality assurance mechanism and oversight of the actual framework, and it means that a one-off review carries greater weight.

Fourthly, the more vulnerable cohorts, including those people from a refugee background, may be disadvantaged by the free market tendering approach unless the commissioning process actively considers the greater complexity and clearly specifies in the KPIs how that will be managed. The current format—effectively, allocating half the time for this cohort, if they do need to engage an interpreter—and also the tender process, the commissioning agreements with the KPIs and the reporting requirements must consider cultural safety and inclusion of vulnerable cohorts, use of language services and provision of cultural training. Contract arrangements must have accountability to address these gaps and shortfalls identified in a systematic manner. Funding for interpreters, we strongly feel, should sit outside the tender requirements in order to avoid inadequate budgeting for those interpreter provisions, and interpreting service occasions should be included as part of the KPI as well.

Lastly, the reporting should have adequate information to analyse core population. The invisibility of this data or of this population cohort does require us to be quite rigorous in reporting requirements, including what we would advocate for as a CALD minimum dataset which includes country of birth, language spoken, date of arrival, ethnic or cultural background and interpreter required. This will enable a more equitable and quality assured measure, and it will ensure that the NDIS is more reflective of the needs of this cohort.

CHAIR: Thanks, Ms Sackey and Dr Paxton. Given that your submission is that independent assessments could be a valuable mechanism, I think the question before us in this context of the discussion is: what then are the minimum requirements in order for independent assessments to be valid and usable? I know you weren't here for these, but I will summarise a couple of pieces of evidence from our earlier witnesses. Witnesses from the Hopkins Centre at Griffith University suggested that assessments need to be valid and legal; they need to be transparent so that people unequivocally understand what's involved; they need to be explainable, including to the AAT, if necessary—again, so that people understand; and every step should be reviewable. To that was added a couple of other things: additional information should be able to be provided and also there must be a multidisciplinary approach to independent assessments. First of all, just to shorten things, do you concur with that list of minimum requirements?

Ms Sackey : Yes, definitely. Georgie, I think you would concur as well?

Prof. Paxton : I would. I think there are, perhaps, additional considerations about the access to accredited interpreting, where that's required, the acknowledgement of the time and location that will be required and the cultural elements.

CHAIR: Yes, I was going to come to that. In your submission, you recommend:

1. Inclusion of other independent health/disability reports in the IA processes (i.e. overseas diagnostic reports, or functional assessments provided through government funded services e.g. hospitals, community health, community mental health, public health, or torture trauma services).

Without putting words in your mouth, I'm trying to look at what the list of minimum requirements would be. Let's assume we're not discussing a refugee, or a person who has come here as a refugee, but an ordinary member of the community who was born in Australia, for example. Would you include, amongst those minimum requirements, the consideration of any reports from treating practitioners, whether they were health practitioners or allied health practitioners, as part of the assessment?

Ms Sackey : Speaking broadly, I guess I would. For our cohort in particular, the level of trust and the explanatory models around disability and health play a significant role in engagement with health professionals. The fact that we've got someone who has engaged and built a relationship with a trusted person, who understands where this person is coming from and their cultural experience and knowledge, becomes really valuable. If you're in front of a Somali individual with a cognitive impairment, it's really unlikely that you're going to build any trust or understanding in three hours. Often what happens is that language rather than cognitive impairment becomes the issue. There's a misrepresentation of people's conditions and functional ability because they're assessed based on language and culture rather than what's actually happening. So, yes, I would, especially if it was done with reputable public services, like torture trauma services.

CHAIR: Professor Paxton?

Prof. Paxton : I would go further and suggest that we have an excellent health system in Australia. We have great public health facilities, we have excellent primary care facilities and we have excellent hospital facilities. Those providers are independent from the services delivered by the NDIS. All of those independent health and disability reports can, and should be, included. There will be a depth coming from a culturally appropriate refugee or migration focused assessment, which, I think, should be incorporated within any independent assessment process. But, broadly, we have excellent independent disability reports within the Australian health system, which should be included.

Ms Sackey : I guess the gap has been in the access to functional assessments. One of the things that we noted was that there has been a barrier to accessing private OTs or physios to get those assessments, which are required in order to be able to get the services you need, because resources, for our cohort in particular, are kind of limited. This opportunity to actually include access to an assessment is really valuable. But I totally concur with Georgie; we have an excellent system. It's just that sometimes the long waiting lists and the gaps in accessing that system make it difficult.

CHAIR: From what you've said, I take it that, beyond that, access to appropriate language services should also be a minimum requirement, whether that's an interpreter or whatever.

Ms Sackey : Absolutely. Access to accredited interpreters is fundamental to accessing any of these services—health, legal or disability services. We have excellent translating and interpreting services in Australia. I think we're one of the unique countries in the world to do this. However, there are emerging gaps in that system, in that there are issues around maintaining and engaging interpreters in a professional way. That is due to how interpreters are remunerated and how they're engaged in our system. There are also emerging languages that we do need to consider, even though it's only really a small proportion. You might be aware, for example, with settling the Yazidi people in both Armidale and Toowoomba, they speak Kurdish Kurmanji, which is a language we don't have much access to interpreters for. There are individuals who need access to the NDIS and those individuals have really struggled to get an equitable and fair assessment. I feel strongly that without the interpreting and language services we wouldn't be able to be as great as we are as a multicultural country, so anything we can do in this and in any other programs to bolster that is very, very welcome.

Prof. Paxton : Language services are essential for access and the independent assessment process, but there is a concern that some minority groups may not have made it into the NDIS to be approached in the process [inaudible] so there's a primary access issue into the NDIS itself. I think there's an interesting question as to whether the independent assessment process could actually be utilised as a safety net to identify gaps in diagnostic assessment to consider whether provisional assessments might be appropriate and to help facilitate that diagnostic process. The waiting list to receive a formal diagnosis and [inaudible] conditions and obtain functional assessments can be years, whereas people might need supports immediately after they arrive in Australia, and I don't think the primary access issues are fully addressed by the independent assessment process.

CHAIR: Just further in terms of what might be some minimum requirements, I also take it from what you've said that where interpreter services are being used the amount of time for the assessment—it should properly take into account that it requires much more time.

Ms Sackey : Absolutely. I think that is a fundamental issue that is not always taken into account, especially if somebody is trying to put together a tender and is trying to cost out occasions of service. We know that, if you're not accustomed to thinking about interpreting and language and culture, you're less likely to factor that into your overall costs and the overall impact on your model. I work with interpreters all the time. It's the norm now; it's like it's in my DNA, but that doesn't mean that's a given across the board. So there's not just the time for face-to-face that you need to double; you also need to consider the administrative components—you need to engage interpreters, book them, make sure that they arrive. There's always the likelihood of having two people miss an appointment because the interpreter doesn't turn up or the client, the patient, doesn't turn up. So I would strongly support any mechanisms that flag this and ensure that interpreting costs are actually sitting outside of the tender process.

CHAIR: Dr Paxton, could you elaborate a little more on the comments you made about provisional assessments?

Prof. Paxton : We don't always consider migration and employment of overseas born or recent arrivals within some of our policy structures. I'm a pediatrician. For children born here, they will go through a step-by-step evolution of diagnosis through the early childhood early intervention service system, and there is a period of years in which it's entirely appropriate to work through a diagnosis and consider function and consider entry into the formal NDIS scheme. For people who arrive with complex disability, we don't have that same mechanism or necessarily the luxury of time, so it might be a wait of years to go through the public service system to access the NDIS, whereas the supports are needed far more quickly. I think we can be generous in our understanding of disability where we see people with overt and complex disability and needs associated with that, and we can support them through entering the NDIS with provisional arrangements in place. Someone who has severe cerebral palsy and an intellectual disability and is in a wheelchair may actually wait some time before they have medical confirmation of the components of their disability, yet they could easily be supported by NDIS with a provisional arrangement. I think that flexibility could actually be an important part of this. For individuals with an intellectual disability, particularly adults, the wait to obtain a cognitive assessment is substantial. It is also impacted by the lack of interpreting access for the majority of psychology services, which compounds that wait. Individuals with an intellectual disability but without an overt neurological or physical disability often face long waits to access NDIA. There is real complexity for them in how they negotiate the Australian service system, or welfare, or support system, or access to education and employment in the meantime. The NDIS could do a great deal of good for those cohorts.

Ms Sackey : To add to that, we've had numerous examples of people who have been rejected by the NDIA because of the lack of functional information and assessment. This was largely due to the fact that the psychologist, for example, who was trying to do the actual assessment didn't have access to the validator tools. So people were rejected on the basis that they couldn't engage the same rigour in terms of the assessment process. So that flexibility in the system, to be able to accommodate for this diversity, isn't really quite there yet. And I agree that the long waiting periods for people who arrive is a significant barrier given that the state support has really been peeled back.

CHAIR: Would there need to be a threshold of obvious disability for a provisional assessment to be valid? What would concern me is if somebody got a provisional assessment and then it was found, on a subsequent or final assessment, that they didn't qualify. That would almost be worse than not getting a provisional assessment in the first place. So should there be a threshold? How do we overcome that problem?

Ms Sackey : I'll let Georgie answer that, because that is bordering on that medical diagnosis.

Prof. Paxton : I think it comes back to the use of independent collateral information, which is an asset and an adjunct to the independent functional assessment. If there is a robust healthcare assessment from an allied health provider or from a medical provider which is within that public health service system, we can make a very strong formulation as to people's function and their disability. Considering child and adolescent health, if a child or young person arrives and they haven't had any language at all until they're five, or they haven't been able to dress themselves or take care of themselves until they're 10, 11, 12 or 13, or they've not been able to function within an educational environment, we can be confident that this person has a disability. Whether or not they've had a labelled type of cognitive assessment under the Australian system doesn't change that primary formulation of this person having a disability. I think we need to be more flexible about how we consider this, particularly for adults.

Ms Sackey : To add to that, a lot of access to the NDIS is based on that self-advocacy we were talking about earlier. My experience from working with families who are newly arrived is that even the concept of disability and of getting support for your child is just not there. So you've actually got delays just in the process of seeking that support. The health system is there to support that kind of journey, but, again, navigating the health system can sometimes be really fraught in the first 12 months post arrival. So what we're seeing are people who actually do need support but won't know about the support and won't ask for it because they don't understand that they're eligible for it, and they will struggle. What we then see is the perpetuation of that disadvantage, which then leads to people saying, 'Oh, look at how they're treating that child' and making that kind of judgement. That further marginalisation then creates problems further down the track. So a provisional diagnosis or the acceptance of how a GP or another health professional provides support in that initial six months is so important. But it doesn't necessarily carry the weight we would like it to because of the structure of the system. So it would be great to be able to have that—both the overseas collateral information and the on-arrival assessments, which are all done, in most states and territories, by people with considerable experience in working with refugees. Having said that, I note that it does mean that everyone who arrives gets access to those more specialised services, but I would suggest that it would be great to incorporate it.

Senator CAROL BROWN: Thank you for your evidence here today. I just want to ask whether you've been part of any of the consultations on independent assessments.

Ms Sackey : Do you mean with the NDIA directly?

Senator CAROL BROWN: Yes.

Ms Sackey : Here in Queensland, we did meet with representatives—the community engagement team. We met with AMPARO, which is a disability advocacy and support service here, and we provided some direct feedback, very similar to what we are speaking about today.

Senator CAROL BROWN: Have you had an opportunity to have a look at the information paper that was put out from the NDIS about personalised budgets?

Ms Sackey : I didn't, but Maureen Fordyce from AMPARO did. I remember that there was some concern about the need to have somebody who does the support coordination work being included as a standard item. That's to ensure that packages are effectively utilised by individuals. That was seen as something that perhaps would really support people from CALD and refugee backgrounds to get more out of their packages.

Senator CAROL BROWN: In that documentation, they talk about exceptions and tailored approaches. One of those yet-to-be-developed approaches is CALD, and I wondered whether you could let the committee know what sort of consultation you are aware of that the NDIA are undertaking around what they call exceptions and tailored approaches for the community.

Ms Sackey : I'm sorry. I'm not aware of any. I don't know, Georgia, if you are.

Prof. Paxton : I have not been involved in the consultation process for this information program. I'm very familiar with the information paper and I pay close attention in developing a position with colleagues.

Senator CAROL BROWN: I'm sorry if this question has been asked and answered, but are you aware of any people from CALD backgrounds who've been involved in the pilot program?

Ms Sackey : No.

Prof. Paxton : We think that CALD communities were significantly underrepresented in the pilot program. There's no reference to interpreters within the information paper, and it's unclear whether the pilot program involved working with interpreters. Everything we do have suggests underrepresentation of CALD communities across all elements of piloting and implementation of the NDIS. What I would comment on as a clinician is that it is very difficult for my patients with low English proficiency to enter into the NDIS. It takes a far longer time. Even once we do manage to access NDIS support and packages, it's still very difficult for these cohorts to access services. So the entire process is an ongoing challenge. I frequently have patients who have not managed to gain benefit from their NDIS allocated funds and have not managed to access the services those funds are supposed to entitle them to. It's important to understand the NDIS, the service access pathways, what services people might be able to receive and how they could get benefit from those services. That's essential. When it works, it can be absolutely brilliant, but it is an ongoing challenge for CALD communities.

Ms Sackey : That's why I think, in the way that the packages are administered, having that additional support coordination funded, separately to any of the direct service providers, could go some way towards ensuring adequate take-up and adequate engagement with services.

Senator CAROL BROWN: Do you believe that the independent assessment model as currently proposed will address the issues around consistency and fairness in the NDIS?

Prof. Paxton : I think that's something to aim for, and I think it could be an excellent mechanism to address consistency and fairness, but I do think it will need to have a better-articulated approach to working with language services, providing culturally safe formulations and assisting people in accessing services. It will require considerable refinement, in terms of the contract provisions, around incorporating the full diversity of the Australian community, whether that be cultural background or language background, or disability type and need for services. Instead of a one-off, three-hour assessment, it needs to incorporate and intersect with what has gone before and it needs to assist people moving into services.

Ms Sackey : At the cost of repeating ourselves too much, an impediment to making this work well is the fact that allied health professionals in private practice, up until now, have not had access to free translating and interpreting services. We've tried very hard to lobby and advocate for psychologists, occupational therapists et cetera to have access to interpreting, but, to date, they don't in the private system. So the experience will be that the people who will be doing the assessments—and I note that they're going to be not junior allied health professionals but people with at least two years experience—probably will not have had experience working cross-culturally or with interpreters, which therefore limits their capacity to engage.

Prof. Paxton : Could I also add a further point on digital literacy and technological literacy. I speak as a Victorian who experienced prolonged lockdown over the course of 2020. A significant gap was opened up in people's access to technology. When schooling transitioned to online learning, that opened up a gap for children and young people where there may not have been access to technology. When health systems shifted to telehealth, that was genuinely challenging for people with low language proficiency or low digital literacy. And when NDIS services in Victoria switched to a telehealth model, it was a substantial disadvantage for cohorts where English was not their first language or where either print or digital literacy was a challenge. So I do think we need to be cautious and consider the digital literacy elements in how independent assessments may unfold, particularly also as we manage COVID at the national level.

Senator CAROL BROWN: Given that you believe there needs to be considerable refinement—I think that's what you said—what do you think the government needs to do? Does it need to have meaningful consultation or enter a co-design process before settling on a model going forward?

Ms Sackey : I would suggest that a co-design process, actually incorporating the voices of people with lived experience, is really critical to designing good approaches to this model. I would also suggest making the NDIA look at their strategic cultural diversity plan. They did release one in 2018, but we are waiting on an implementation plan. We haven't actually seen the implementation plan. It would be terrific to be able to seek some of that documentation and some engagement to develop real landmarks for how this would work, including how we might collect data, how we might diversify the pool of people who deliver assessments and how we look at the engagement and training of interpreters. All of those things would strengthen the framework and would also then, obviously, make it more equitable for everyone.

Prof. Paxton : I would add that I think the commissioning process should actively consider complexity and should articulate this within the contracts and within the KPIs. We need to ensure that we are addressing the equity issues as we commission any independent assessment process. That needs to include language services, proportionate representation, accountability to address any gaps and shortfalls, and flexibility within both the contract arrangements and the assessment tool adapted and chosen. There are issues around interpreter funding, as was discussed, but ultimately we also need to be reporting on CALD populations. We need to consider our diversity within Australia. If we don't have some measurement or some understanding, we're not going to be able to evaluate any policy or programmatic changes. I think incorporating migration related data in terms of country of birth, language, whether an interpreter is required, when people arrived in Australia, ethnicity and cultural background will actually let us evaluate any co-design or policy that is implemented.

Ms Sackey : And I think COVID has really highlighted the need to capture this data.

Senator CAROL BROWN: The tenders have already been awarded for the panel that's doing an assessment. I'm not aware of whether any of the issues that you've just highlighted were part of that tender process. Are you aware of that?

Prof. Paxton : A lack of information on language services and considering vulnerability within the information paper would suggest that it's perhaps not likely to have been included in the tenders. But I don't have information—

Ms Sackey : No. From what I recall, there was some indication that training was a requirement; people needed to demonstrate that they were doing some kind of cross-cultural training. There was also a suggestion that they would be matching people with allied health professionals from similar cultural and language groups, but there was no indication of how that would be done. I would also suggest that a lot of the concerns that we have raised, and have been continually raising, wouldn't have been considered in that tendering process.

Senator CAROL BROWN: Okay. Thank you for your time today.

CHAIR: Professor Paxton and Ms Sackey, thank you very much for your submission and thank you for coming along and discussing it with us today. We appreciate it.