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Joint Standing Committee on the National Disability Insurance Scheme
Independent assessments

CARTER, Ms Emily, CEO, Marninwarntikura Women's Resource Centre [by video link]

RICE, Dr Lauren, Research Fellow, University of Sydney [by video link]

THOMAS, Ms Sue, Strategic Priority Lead, Marninwarntikura Women's Resource Centre [by video link]


CHAIR: I welcome representatives from the Marninwarntikura Women's Resource Centre and the University of Sydney. Do you have any comments to make on the capacity in which you appear?

Ms Carter : I'm a Gooniyandi Gija woman.

Dr Rice : I'm living and working with Emily in the Fitzroy Valley.

Ms Thomas : I work with Lauren and Emily.

CHAIR: I thank each of you for coming online. We have your submission. Would one of you like to make some opening comments?

Ms Carter : I just want to thank the committee for giving us an opportunity to speak today. I do have a presentation that I want to read out to you, and then Dr Rice will come after me. If I can do that, we can just push on.

CHAIR: Please go ahead.

Ms Carter : The 2020 National Agreement on Closing the Gap highlighted the importance of true partnerships and consultation with Aboriginal and Torres Strait Islander people. Despite this, there seems to have been little or no consultation with Aboriginal and Torres Strait Islander people about the NDIS-funded independent assessment process. Whilst I haven't been invited to discuss the independent assessments I have been invited to attend several meetings with NDIS representatives about the rollout of the scheme in the Fitzroy Valley. At each meeting I and other senior community members openly shared our knowledge and learnings to help ensure the rollout of the scheme was effective, and each time our advice has been ignored. The consultation we have experienced has felt shallow, tokenistic and redundant. Our voices have not been heard. Aboriginal-controlled organisations like Marninwarntikura Women's Resource Centre are born out of the communities and are designed to act as a collective voice for our people. The NDIA must work with Aboriginal community controlled organisations if we want to succeed in these communities. This means working together in a genuine partnership and taking local ideas seriously and putting them into action. If we do not do this it will impose more trauma and disappointment on our communities and further entrench disadvantage for some of the most vulnerable people in our country.

My organisation has the trust of the Fitzroy Valley, and this is evident through the success of our service. However, the NDIA recently risked compromising this hard-earned trust when they threatened the removal of the 0-to-7 early intervention program from the Kimberley Aboriginal Medical Services and our organisation only 12 months after we began rolling it out. Short-term funding agreements mean organisations risk creating empty promises to our community. The lack of access to disability services has a long history in the valley, and the injustices will not be rectified by short-term programs that aren't given a chance to make a difference.

As a result of the risk put on us with the zero to seven program, we are reluctant to take on any other aspects of the NDIA out of fear it could negatively affect our organisation's reputation and the uptake of our essential services, like our early childhood centre and our women's refuge shelter. If the NDIA want to embed themselves in Aboriginal community-controlled organisations then they need to offer a minimum of five-year funding to ensure that the organisations have the security to make promises to our communities that they can keep by implementing programs that make a difference.

At present the NDIA is severely failing our people in the Fitzroy Valley. In 2020 my team interviewed people with disability about their experience with the NDIS, and many have said that they are worse off now than when they were under the old disability services model. While there are over 60 people with a disability signed up to the NDIS across the Fitzroy Valley, very few of these individuals are receiving any support due to a severe lack of services. We were told that, once people were signed up, the services would come but this has not happened due to the complex nature of service delivery in remote communities. As a result, there is a severe underspend of NDIS funds in our region. This is just one example of why a one-size-fits-all approach does not work for Aboriginal communities.

As I noted in our submission, our postcode should not dictate the types of services we receive, and yet that is exactly what is happening. I'll now pass to Dr Rice and she can talk about the more specific concerns about the independent assessment process.

Dr Rice : I've been working with people with a disability for the past 16 years and administering measures like the Vineland for the past 10 years. In 2018 I joined Ms Carter and Professor Elizabeth Elliot as a co-lead investigator on the Biggest One Kid Project. In this study we're following up the children from the first Australian population based prevalence study of fetal alcohol spectrum disorder, or FASD. As part of the project we're conducting interviews and neuro-psychological assessments with all young people in the valley aged 17 to 19. We're also evaluating the NDIS rollout, including trialling the appropriateness of the Vineland when administered with parents of young people with FASD. This project has given me firsthand experience of the difficulties in administering informant report measures in remote Aboriginal communities. I have administered both interview form and parent form of the Vineland with hundreds of families in Sydney and now with over 70 families in the Fitzroy Valley. I can confirm that, while this measure works well in Sydney, it's completely culturally inappropriate for use in Aboriginal communities.

The NDIA claims that one of the goals of the independent assessment process is to improve equity by ensuring that everyone has access to a functional capacity assessment to inform the development of their plan. However, as this stands, we believe the proposed independent assessment model will only serve to widen inequity for Aboriginal and Torres Strait Islander people. I've seen how the Vineland can incorrectly screen out people with a disability from accessing the scheme simply because it's not culturally appropriate. We believe that the only way to create true equity is for government to invest in the development of culturally appropriate tools for use in Aboriginal and Torres Strait Islander communities.

We also believe that the independent assessors working in remote Aboriginal communities need to be more experienced than those in urban settings because they have more barriers to overcome. These barriers include a large number of people with chronic, complex health and mental health conditions; fewer people with a confirmed diagnosis due to the limited health services, which makes it difficult to prove the permanency of the disability; poor health, mental health and disability literacy, making it difficult to discuss these topics; English as a second or often third language; a history of negative experience with government services; higher mobility, causing logistical challenges in connecting with people; and poor access to phone and reception, making telecare without support of community navigators impossible.

Community leaders like Emily have consistently stated that there needs to be someone with disability experience living in the valley for the first few years of the rollout to help break down some of these barriers and build up local capacity. All of the Aboriginal controlled organisations in the valley have no disability experience, yet they're expected to, all of a sudden, turn into disability services. However, this advice has consistently been denied.

Our prevalence study taught us that 20 per cent of the children in Fitzroy Valley have FASD, which is one of the highest rates in the world. Even more shockingly, 95 per cent of the children up here have experienced significant early-life trauma by the time they've turned seven. Sadly, none of the children diagnosed with FASD in our study have received any disability support in the last 10 years, despite having a diagnosis. To diagnose someone with FASD, we need to examine 10 domains of impairment to see how prenatal alcohol exposure has affected their brain. Five of the 10 impairments require direct assessment with a psychologist, yet in the Fitzroy Valley there's no psychologist available to assist with a diagnosis or to help people overcome their trauma. A lack of services is perpetuating the problem. The valley needs access to a psychologist with experience to conduct assessments that truly capture the strengths and weaknesses of a person and can inform the types of supports they need. This information is invaluable in helping parents to understand how to support their child, as well as services. If the NDIA really wants to improve the inequity for Aboriginal and Torres Strait Islanders then they need to start listening to them and work together to create systemic change.

CHAIR: Thank you very much. I will go to Senator Steele-John.

Senator STEELE-JOHN: I'll go straight to Dr Rice. Can you confirm that you've been administering Vineland for 10 years?

Dr Rice : Yes.

Senator STEELE-JOHN: And it is your view, based on your expertise and on your practical experience in administering Vineland, that there are significant challenges with using it as it is intended in a First Nations community context because of culturally inappropriate aspects of the questions it asks and the tasks it requires you to undertake; is that correct?

Dr Rice : That's correct. I've administered it in Sydney with people with a disability and their families for years and not had many issues. We chose to administer it up here, knowing it doesn't work, just to prove the inappropriateness. We chose the Vineland out of all of the measures because we were interested in the measures that are available for adults or for seven years plus. The Pedi-CAT, we know, is psychometrically unsound, so we chose the Vineland because it is the gold standard; it does work well in other places.

It was trialled in the Lililwan project, which was the first prevalence study of FASD 10 years ago, and they scrapped it because it just didn't work. They tried to use it in the Banksia Hill study, where they looked at the prevalence of FASD in the juvenile detention system in WA. It just didn't work. And now we've trialled it here, both using the language as it is written and my expertise in using the interview form. We also modified the language. Emily has 10-plus years experience doing research and helps us to modify items to make sure that people understand it, and it still just doesn't work. The items just don't make sense. They don't fit with what life is like up here.

Senator STEELE-JOHN: You seem to be saying—please correct me if I'm wrong—that as a capacity assessment it is not appropriate, effective or accurate in a First Nations context as a tool for assessing the capacity of an individual?

Dr Rice : You get an overall score with the Vineland, then you get subscale scores. There are some subscales that work a little bit, but most of them don't make sense at all. The communication one, in particular, just doesn't make sense; neither do the social skill ones.

Senator STEELE-JOHN: That is using Vineland in the context in which it was designed and intended to be used—as an assessment of somebody's capacity. It's the case, though, isn't it, that Vineland was never designed to have dollar figures attached to the outcomes of its assessment automatically. I'm right in thinking that, aren't I?

Dr Rice : It was designed to measure adaptive behaviour—how well someone can function in their environment. It was not designed to attach dollar signs, and it was designed in a non-Aboriginal community and does not translate at all.

Senator STEELE-JOHN: It seems that you're sharing with the committee that, firstly, it has significant problems being applied for its purpose within Aboriginal communities and, in your view, as somebody that's administered it for 10 years, there is no support for the idea that it would be appropriate or instructive in an application of attaching funding to its outcomes automatically?

Dr Rice : It is a good measure, in the communities it's designed for, to measure adaptive function, but that's just one piece of the puzzle for anyone with a disability. You have people with a disability who have high IQs, low adaptive function and vice versa. It just measures one thing; it doesn't measure a whole person.

Senator STEELE-JOHN: When we are considering the question of funding, it is important then to be able to consider other contextual factors within that person's environment to be able to ascertain the appropriate level of funding?

Dr Rice : Absolutely, especially given it's an informant report. It's not completed by the person with the disability; it's completed by someone else. It's so dependent on that person's view. It's subjective.

Senator STEELE-JOHN: Yes, exactly. I'm wondering whether you would have concerns with the idea that Vineland, as proposed in the independent assessment framework, is being placed alongside other tools to be then used as the feed-in data for an automatic calculation of budgetary allocation. Does that concern you?

Dr Rice : Even in Sydney, I see variation in the way that Vineland is used. I don't know whether there are plans to use the interview form or the panel paper form, but the interview form requires a lot of experience and expertise in understanding disability.

It also concerns me that someone like a physiotherapist would be administering it to someone who has an intellectual impairment. My experience is in intellectual disability and emotional behaviour problems, and I'm very confident administering it to someone who has those sorts of impairments, because I can ask questions to make sure that I've captured everything that I know might be associated with the disability. But if you were to ask me to do it on someone who only has a physical disability, that's out of my realm. I wouldn't be able to administer it as appropriately.

It's not only subjective in the person who administers it but also in the person who's filling out the thing, and that's completely separate to the person who actually has the disability. I think it is a useful tool, but it's just one piece. I think we need an Aboriginal version up here.

Senator STEELE-JOHN: For somebody that isn't familiar with these tools, for instance, perhaps somebody following along at home, could you give us a couple of examples of how Vineland is culturally inappropriate? What does it miss in a First Nations context? What are the questions that it asks that are inappropriate?

Dr Rice : Vineland 3 asks parents if their child can use a table of context. A lot of the parents up here finished school when they were 14 or 15. They don't really have books. They don't know what a table of context is. There's a lot of high language that doesn't make sense to Aboriginal people because of their lack of education.

There are also culturally inappropriate measures. If people here want fresh fruit and vegetables, they grow it. They pick it from their garden. They go and collect bush foods. One of the items is: do they wash the fruit? That's just culturally inappropriate because they're not buying it from a supermarket. They ask if they take their shoes off when they go into the house, but most kids from zero to 12 don't wear shoes. How does a parent answer that—'I don't know; they don't wear shoes'? There are so many items.

It's not just that some are culturally inappropriate; the way you administer them doesn't work. My experience with administering up here is that Aboriginal people do not like talking about other people's problems, even their closest family. I've had a family that I worked with and I explained, 'We have to paint the picture black. We have to talk about the problems to the NDIS so that they understand the needs of the child.' They say, 'Yeah, yeah.' We went through it and we role played. We got to the planning meeting and they said, 'He right, he right, he right.' This child has level 3 autism. He doesn't speak. He is not right.

When I administer the Vineland there are items about whether they go to the shop and whether they can check that it's the right money. I ask, 'When your son goes to the shop, would he be able to check that it's the right change?' Every single time the parents say, 'Yeah, he can do that.' I know some of these kids, and I know they can't. I then ask follow-up questions, only because I understand the disability and know these people, like, 'Okay, so if I give him $5 and the milk cost $2.30 he'll know how much change he needs?' Every single time the parents say, 'Actually, no.' But that's not an item on the Vineland. It's only because I have the expertise in knowing how to ask extra questions to make sure that what the parents are saying is accurate.

Senator STEELE-JOHN: You also raised concerns around the Pedi-CAT. The exact phrase you used in your submission is that it contains poor psychometric properties. This is a second tool that we're looking at using, or the government has proposed to use. Can you outline what you see as those poor psychometric properties?

Dr Rice : All of this is published. There was a study conducted by researchers at the University of Sydney and Westmead Children's Hospital where they compared the accuracy of Vineland versus Pedi-CAT, and the Pedi-CAT doesn't stand up. It was a measure developed by occupational therapists and the psychometric properties weren't evaluated. It doesn't measure what it's supposed to measure, and the research has shown that. I'm not quite sure why it was chosen in the first place.

Senator STEELE-JOHN: Putting all of these things together, Dr Rice, do you fear that, should these tools be implemented in a First Nations context, we are in danger here of creating a process that perpetuates forms of systemic racism and disadvantage?

Dr Rice : Yes.

Ms Carter : Yes, very much so. Dr Rice is a psychologist, but, as an Aboriginal person who is from the Kimberley, the way I see it is that it's about Aboriginal people fitting into a very Western way of looking at disability, and it will fail our families. No-one seems to be listening, and we are going to miss out. That is the worry and the concern for all of us. I can't say it much more simply than that; otherwise I'll get angry about it. We're talking about co-design partnerships. I want to see that. What does that mean for us? How do we do this in the right way so that our communities benefit?

Ms Thomas : Our families are already not engaging with the NDIA. The fact is that even children with a diagnosis from the Lililwan study have never received any disability services. We're not only thinking about how inappropriate the tools are; the fact is that the independent assessors are based in Perth, more than a thousand kilometres away. They won't have a relationship with the community. They won't have any understanding of the families, and the families won't even be in front of an independent assessor. There's a lot of work that we do in the background just to get families onto a plan. We use community navigators. We use Aboriginal people from the community that go and walk alongside a family to help them to understand the NDIS. We've had families that have a plan and don't even understand it, and don't access the services. That's where the underspend is.

We're thinking we should have some sort of model so that the independent assessor was an asset to the community, and was able to bring in some resources rather than having some punitive system that is set up that will promote more families disengaging or not having any access.

Emily keeps talking about how people need to know what 'good' looks like, and as an organisation we're trying to, and we're very lucky that we've got Lauren here, who's navigating the NDIS for us, because it's very complex for Emily and I, who have lived in the Kimberley for decades and don't understand this new system. We're in a fortunate position, but we also are really concerned about systemic racism and systemic disadvantage that this will embed further in our communities.

Senator STEELE-JOHN: Thank you very much. I'll pass back to the chair now.

CHAIR: Senator Brown.

Senator CAROL BROWN: Thanks, Chair, and thank you for your evidence. Senator Steele-John has asked many of the questions that I wanted to ask around the tools and what it could potentially lead to in Aboriginal communities, so my only question to you is: has this feedback around how the tools are inappropriate and the likely effect if independent assessments are rolled out—as you've talked about today—been fed back to the NDIA or, indeed, the previous minister or the new minister?

Dr Rice : We haven't been invited to talk at all about the independent assessors, but there have been 10-plus NDIS representatives who've flown from Darwin, Broome or Perth to come to Fitzroy to talk to people like Emily. Every single time the CEOs take the time out to explain, they have a consistent message; they know how things work here. Every single time the person's gone, 'Yep, yep, yep,' and done the opposite. Ten times people have come here and asked us how to roll out the NDIS. Ten times we've told them the same story and the opposite has happened.

We have people who've been on plans for two years that haven't received a single service. Everybody is saying to us that in the last five years they haven't received disability services and 'we want the old disability services model', because there are just no services up here. We haven't spoken to anyone about the independent assessors, but there's been lots of consultation. We even had a planner from the NDIA who's supposed to drive to Fitzroy and work here part-time and the other time in another community. His wife managed to find housing here. He put his hand up and said he wants to be based here because he can see that there's a need; that because these services don't understand disability, he can help. Instead of agreeing to that, the NDIA stopped him coming here. Now we have a guy who doesn't understand the community come once every six weeks and just offend people. That's all we're getting out of the NDIA at the moment.

Senator CAROL BROWN: That must be extremely frustrating. That's probably not the right word, but it obviously feels like this just goes on and on and nothing changes—

Ms Carter : Exactly.

Senator CAROL BROWN: for the better. Thanks, Chair.

CHAIR: Mr Wallace.

Mr WALLACE: Thanks, Chair. Dr Rice and Ms Carter, you've both given evidence this morning that a number of people have said to you that the services that they were getting under the old state and territory funding models were better than what they're getting now because of the difficulty in getting service providers out into remote areas. Would you mind just elaborating a bit more on that because I'm struggling to understand how the services could have been better in a state-based model when you're still dealing with the same tyranny of distance? Has that been pressure tested? We're always going to have difficulties in getting private providers to remote areas. I don't know what the answer is to that, but if you could just give us a little bit more understanding of how things were better under the older model?

Ms Carter : Under the older model, in the old disability commission days, there was a presence on the ground.

Mr WALLACE: All the time?

Ms Carter : All the time. We had a disability commission office and we had a worker on the ground. We also had them coming across from Broome. There was that constant where people lived and worked in our community. That's no longer happening, but the pressure is on us to take up a position of NDIS. Honestly, NDIS is a government department and it should have a presence here on the ground. We have Centrelink here. Why can't they co-locate with Centrelink on the ground?

Mr WALLACE: I need to understand this a little better because there's a difference between having a shopfront for the NDIA and having an OT or a physio in various parts of remote Australia. It's all well and good to have a shopfront if you can get one in a particular location, but that's not providing services to the areas where they're needed in remote, regional or rural Australia.

Ms Thomas : There was a very obvious place for people to go to seek support. At the moment people are coming to us at Marninwarntikura because Lauren has the expertise. You can't get Aboriginal people to speak a different language. They don't know that they're entitled to ring an 1800 number and get an answer after waiting on the line for hours; that sort of thing. We walk right alongside people to assist them even to just understand if they've got a plan and what their rights are.

Mr WALLACE: But aren't we conflating two different issues, though, about shopfront services as opposed to the disability service provision in remote areas? I understand you want both, but—

Dr Rice : With the old model it was one person who was on the ground who was providing the service and being there and making sure the drive-in drive-out services happened. Now that that person has gone, in order to get an OT you need a plan, which means you need to talk to an NDIS person. You need to talk to an NDIS person and then you need a support coordinator. None of this exists. So how do you get an OT? We have people who have plans who have to jump through five hoops to see the OT, but those hoops don't exist. There is no support coordinator. One organisation does have drive-in drive-out support coordinators that pays its staff so poorly that it can't keep them, and it hasn't for the past year.

Sure, there are OTs that drive in, drive out, but how do you access those OTs when you don't have a plan and you don't have a support coordinator, or you have a plan but you don't have someone to pay the OT? It's just like the basic service isn't there. It's not this idealistic 'we want a shopfront'; we want someone here to help us jump through the basic paper hoops so we can access the very little services that are there and to make sure the services are doing what they're supposed to be doing.

We've interviewed everyone with a disability here who was on the old disability services who is on NDIS now, and we've seen private drive-in drive-out services charge for things they don't do. They drive for four hours, can't find the person, don't even try to ask around, drive back and charge the person. If you look at plans in the Fitzroy Valley you'll see that all people spend it on is driving in and out, and that's only if they're lucky enough to actually have a support coordinator.

Mr WALLACE: Those are my three questions. Sorry, Chair, I've gone one over.

CHAIR: Thank you, Mr Wallace. Can I say thank you to all representatives of the university and the women's resource centre for your submission and also coming online and discussing it with us today. We greatly appreciate it. Thank you very much.

Dr Rice : Thank you.

Ms Carter : Thank you.

Ms Thomas : Thank you.