I am a person with a disability - a wheelchair user with limited use of my hands. I'm also ageing - I turn 50 years old this year. I work full-time, so I have the incredible fortune of having a degree of financial independence. I'm looking forward to the rollout of the NDIS in South Australia as my disability support needs, whilst not high, are increasing with age and there is limited scope for increased disability support under the current state government funding arrangements.
The Commonwealth parliament' Joint Standing Committee on the National Disability Insurance Scheme has recently held hearings into:
- Implementation and performance of the National Disability Insurance Scheme. Written submissions to this inquiry can be found here.
- Provision of services under the NDIS Early Childhood Early Intervention Approach. Written submissions to this inquiry can be found here.
- Transitional arrangements for the NDIS. Written submissions to this inquiry can be found here.
Unfortunately, as the hearings were not held in Canberra, audio/video is no longer available from these hearings, but I listened sporadically to live broadcasts whilst working (it helps to distract from the noise of an open office area), and hansard provides text of these hearings. Amongst the many points made by organisations and individuals in written and verbal submissions, I took away two quite disturbing points:
1. The NDIS is not funding off-the-shelf devices as assistive technology even when they are a better fit and cheaper
At the Implementation and performance of the National Disability Insurance Scheme hearing in Brisbane on 26 September 2017, Mrs Rachel Tosh from Therapy Alliance Group gave the following evidence (Commonwealth of Australia. Joint Standing Committee on the National Disability Insurance Scheme. (2017a, p. 10):
Around assistive technology, another issue is the lack of funding available for iPads for people who require iPads for communication. Just this week, we had a child where the therapist had recommended an iPad with a specific app for communication. The child's already familiar with the app from school, so it would provide a cost-effective alternative and augmentative communication method for this child. We were informed not to put in an AT request for the iPad , because it wouldn't be funded, because it's not a disability specific support. Then, when we identified that the child actually had a low-risk funding budget allocated in their core supports, we asked NDIS whether that could be used to purchase the iPad. They said no, because it's not low-risk enough; it's too specifically tailored to the child's disability and needs as a communication device. Therefore, you can't get it under level 1, because it's too specialist, and you can't get it under level two, three or four, because it's not a disability specific support. Meanwhile, this child has funding in their plan that they can't use and they have a support need that they can't access. That's a key concern for speech pathologists. Professionally, I've had lots of contact with other speech pathologists nationally. It's a concern across a number of sites, even to the point where assistive technology that is more expensive is being recommended purely because they know that an iPad won't get through. It's not because that assistive technology is necessarily the most appropriate for that client; it's based around what they know they'll be able to get. A less ideal assistive technology that they can access is going to be far preferable to the ideal that isn't going to get funded. [emphasis added]
Similarly, at the Transitional arrangements for the NDIS hearing in Adelaide on 27 September 2017, Mr Tony Starkey from the Royal Society for the Blind gave the following evidence (Commonwealth of Australia. Joint Standing Committee on the National Disability Insurance Scheme. (2017b, p. 4):
A lot of our new technology now is coming through smart devices such as iPhones and Samsungs and things like that. People who are blind rely on audio as their input. And the Apple product called VoiceOver is the first piece of adaptive equipment we have had out of the box in the last 10 years. For the previous 50 years, for any technology, it was always adapted and modified, whereas the Apple iPhone came out of the box and it would talk to us straight away. It was accessible; however, in the eyes of the NDIA, if you mention the word 'Apple' or 'iPhone' or 'iPad' , it is immediately discounted as a luxury, when the actual accessibility of that item is also very important and not a luxury. It is just purely a device that will actually communicate to you what is available. Just to give you an example, a person was assessed for the five functions they wanted to do. One was to communicate through emails and so forth. Another was to choose the colour of their clothes in the morning. Another was to navigate their built environment. Fourth, I was to access some memos and voice memos so that they could do shopping lists and things like that.
They were the four goals that they had, and the assessment was put in that that would be the best solution for them. However, the planner turned around and said, no, that's a smart device. That's an iPhone, and we don't do iPhones or iPads. That would have cost $1,100 and, I think, about $300 in special apps, so about $1,400 or $1,500. However, they did approve $4,300 for a colour tester; a Trekker Breeze, which is the navigation system that talks to you; and a package to read the emails [emphasis added]. It was a real overkill where they just did not accept innovation. As Heidi said, they think that we're just doing the shopping list for people. We're not doing shopping lists for people. We've been providing assessments for well over 50 or 60 years in the area of technology and we don't recommend the wrong item for the wrong person.
Just let the complete madness of this to sink in for a moment. The NDIS would not fund a mainstraim, off-the-shelf (MOTS) iPad plus apps for approximately $1,400 but would fund disability-specific devices to do the same tasks for nearly three times the price. Aside from complete financial irresponsibility, the iPad was also a better fit for the person's needs (one device to perform multiple tasks). For children and younger people with disabilities, a MOTS device potentially helps them stand out less from their peers. Additionally, MOTS devices have established support platforms, e.g. repairers, self-help forums and accessories.
By way of disclosure, I was an iPad early adopter, and have an iPad both at work and at home. I find the touch screen and large format accessible in ways that smart phones are not. Increasingly, I am using voice input also, especially if my hands and arms are feeling symptoms of overuse (usually too much Twitter). I buy and read books on my iPad, send emails and texts, make calls using Cisco Jabber and FaceTime. I upload and edit photos (and occasionally video). I use Google Maps to find my way and to check outside venue accessibility via Street View. I haven't had a need to attach my iPad to my wheelchair, but if I did, I would buy RAM Mounts to do this. This company makes mounting systems for mountain bikes, dirt bikes, quad bikes, motor racing, aircraft, boats - all the macho stuff - but they work really well for wheelchairs too. I have used RAM Mounts to attach my smart phone and cameras to my wheelchair. And this illustrates nicely the notion of MOTS devices having established support platforms in ways that disability-specific devices often don't - people with disability can piggyback off the wider, and more lucrative, market of dudes with mountain bikes, dirt bikes and quad bikes.
So the NDIS rules just need to be updated to ensure funding for iPads to assist people with vision impairment and to be used as communication devices for people with disabilities llike cerebral palsy? WRONG! There are many MOTS devices coming onto the market now that will potentially provide assistance and greater capacity for independent living for people with disabilities. Devices that I'm watching for the potential to make my life easier include:
- Smart locks / digital door locks. Locks that use a keypad or proximity key fob or your smart phone to lock and unlock instead of a key. Allows you to unlock a door remotely for visitors, e.g. carers or support workers. See review of smart locks last year in Gizmodo.
- Apple Watch 3. Answer and make calls from your wrist. Send texts using your watch. Pay for stuff using your watch. Sure sign me up! I changed my daily debt card to a PayWave card recently in an attempt to go cash-free. I have nothing against cash, but notes and coins are fiddly to handle, and putting in my PIN number can be difficult sometimes too. A PayWave card is better, but I still need to dig around in my bag and wallet for it. Having the ability to pay from my watch would be great - when my bank decides to support Apple Pay of course.
- Smart home assistants e.g. Amazon Echo, Google Home, and coming later this year, Apple HomePod. These are marketed as smart speakers than can be voice commands, but the most interesting aspect of these devices for me is their ability to control lights and appliances, as well as make phone calls. Unfortunately, the ability to make phone calls is currently restricted to the Google Home in the US, but is expected to come to Australia later.
Smart devices are evolving fast. And prices are coming down too. The NDIS needs to be flexible and foresighted enough to take advantage of developments in technology so that people with a disability are not trapped in technological ghettoes.
2. The risks of rent-seeking are real and ever present
Rent-seeking "is an attempt to obtain economic rent (i.e., the portion of income paid to a factor of production in excess of what is needed to keep it employed in its current use) by manipulating the social or political environment in which economic activities occur, rather than by creating new wealth." (See Wikipedia.)
Typical examples of rent-seeking includes attempts by organisations or individuals to lobby or advocate for changes to government policies and practices related to trade or other economic activity to benefit those lobbying for the changes. The imposition of licensing controls limiting who can undertake or perform a particular economic activity or provide a particular compensable service is a possible outcome of rent-seeking behaviour.
At the Implementation and performance of the National Disability Insurance Scheme hearing in Brisbane on 26 September 2017, Ms Diane Keating from AEIOU Foundation gave the following evidence (Commonwealth of Australia. Joint Standing Committee on the National Disability Insurance Scheme. (2017a, pp. 2-3):
In terms of submission No. 27, from RDI Consultants Australia, I would like the joint committee to note a statement they made:
Also, behavioural programs are no longer seen as best practice in ASD and these techniques are widely used by the less informed services.
This statement is inaccurate and is not supported by evidence. I ask that the committee dismiss it. ABAA is the only established intervention for children with ASD. RDI is an emerging evidence. I hope that you do not take that comment to heart, because it is not backed by evidence.I am one of only seven ward-certified behaviour analysts in Queensland. I am also a member of the Association of Behaviour Analysis Australia. I cannot be a registered service provider for the NDIA. That means that I can't be registered and that I can't provide early intervention services to children with autism. However, a music therapist is allowed to do that. My statement is: why learn to play the guitar? I could work with these children. However, with my two-year masters in applied behaviour analysis, which was shown to be the only established intervention for children with autism, I cannot provide that service. I have done a two-year masters—as I said—and I sat an international exam and I have been certified. Other health professionals in Australia with no training in the principles of behaviour are able to give advice on challenging behaviour, which I find quite concerning. I'm currently in New South Wales at the moment. There's an inquiry into restrictive practices, abuse practices, where individuals have suffered at the hands of professionals who have not had adequate training in how to deal with children who engage in challenging behaviour.I'm quite concerned because the committee needs to understand that there is a science. We would not allow someone to build a skyscraper without having an engineer who understands the laws of physics to oversee that project. Why are we allowing individuals who have no training in the principles of behaviour to develop very complex behaviour support plans for children? They need to have an understanding of the laws of behaviour and the principles of behaviour. It's imperative that they have this, otherwise you're going to have behaviour support plans that are not adequate; you're not teaching these kids appropriate replacement behaviours. What comes up time and time again is that many children find it difficult to tolerate being told no, being told to wait and someone saying: 'You're finished with that item. We need to put it away.' They don't have the skills to ask for something, to gain someone's attention appropriately and, oftentimes, they don't have adequate leisure skills or know how to occupy their time. If you don't have a health professional who's trained and understands how to teach these skills, the consequences for that child and their quality of life—it's just not adequate. Australia needs to do better. I came to Australia because Australia's was the first government to say that ABA is an established intervention and to recognise that. When I came to this land, I was very disappointed because that piece of paper meant nothing. It was a piece of paper, but it was not backed up by funding for services that are needed for children with autism.The committee asked earlier about ASD and established interventions. The Wong et al study outlines 27 evidence-based practices that should be used with children with autism. Out of the 27, 24 are based on the principles of applied behaviour analysis, so there are professionals who have training in these evidence-based practices. I would ask that the committee understand that a BCBA, board certified behaviour analyst, is an important health professional to be incorporated within any transdisciplinary or multidisciplinary team. Again, look at the research in terms of toilet training—who's published on that? ABA. Food selectivity? ABA. It's not just challenging behaviour; there's more that they can commit to that.In terms of your discussion on RDI, I would like the committee to note that skills such as joint attention are not only taught by RDI consultants. There is research on ABA which is looking at teaching them skills like social attending, and joint attention too. Thank you.
Similarly, at the Provision of services under the NDIS Early Childhood Early Intervention Approach hearing in Adelaide on 27 September 2017, Ms Kate Strohm from Siblings Australia gave the following evidence (Commonwealth of Australia. Joint Standing Committee on the National Disability Insurance Scheme. (2017c, pp. 7-8, 10-11):
...Unfortunately, siblings are overlooked, as I said. There are really five main reasons for that. They're not good advocates for themselves. They've grown up with the needs of someone else always being more important. So they don't feel like they can put their hand up and say, 'What about me?' They often have survivor guilt [emphasis added] and similar feelings that make it very hard for them to say, 'Hey, I have needs here as well.' Families are stretched. We all know that parents are stretched in finding services for the child with a disability. So, often, they overlook the signs in a child who is a sibling that they might be struggling as well. The issues aren't recognised by service providers. They often lack the skills and the knowledge to support these children. The sibling support sector is uncoordinated. There's no collaboration, there's little evaluation, apart from a program that we've developed, and there's also a lack of resources for agencies. As I said, with the NDIS model, agencies now have no flexibility with their funding. Before, they used to use some of their block funding to support siblings. Most of that has dried up.
Again, I come back to the lack of government policy. Siblings are not in policy anywhere. There is a lot of rhetoric about families, but, unfortunately, here there is no mention of siblings. This is unlike in the UK, where the Children Act states that the needs of brothers and sisters should not be overlooked—they should be provided for as part of a package of services for the child with a disability. So siblings are provided for at that policy level. That doesn't mean that every sibling gets support, but at least it's a starting point. There is some imperative for agencies to do something about, which they aren't at the moment. If I get a chance later, I'm also happy to talk about the problems with including siblings under the young carer policy umbrella. There are huge issue with that, including dignity for people with disability, for identity issues with the sibling and a whole range of areas that I'm happy to expand on. [...]Ms Strohm : The first step, I think, is to have a recognised body, like Siblings Australia, that is supported to do the work. At the moment, like I said, we're likely to close at the beginning of next year because we don't have the capacity to do any succession planning. But we need an organisation that can do that workforce development and that can determine best practice guidelines. At the moment, it's really hit and miss. There are programs that may be running, but we don't know if they're doing harm. We really need a coordinating body that can help coordinate any of the work that is happening to ensure collaboration and to do the research. Like I said, what are the barriers and enhancers for sibling relationships to be strong? We don't know. There are a range of things that need to be done, but we need to have a funded body that can do that, both an advocacy body and one that provides services. We've been providing services for a long time, like I said, but there's a limit to what we can do without that resource base—at the very least, some core funding to enable us to do that work.Ms HUSAR: Were you given some core funding a few years ago under previous—Ms Strohm : No, we've only had grants from time to time. For the last 10 years, we haven't had any grants, except for the last couple of years. We had one in 2009 to do a mapping project and run a conference, then we had some funding through the Sector Development Fund to do some work with adult siblings , and we're now doing a mapping project through the ILC. In December, we're back to no core funding. I'm working from my home office; I have done so for the last 10 years. Unless we can get some strength in the sector, then all of that experience and expertise is going to be lost. Like I said, we've got an international reputation. People overseas are using our products. I've been asked to present overseas multiple times. That's going to be lost if we can't get some sort of support.
In the first example, Ms Keating is arguing for changes to the current restrictions on who can be a registered service provider under the NDIS to include board-certified behaviour analysts (and possibly the exclusion of others in the delivery of services to children with autism). In the second example, Ms Strohm is arguing for her organisation to be funded under the NDIS to support siblings of people with disabilities. Both are seeking benefits ('rent') for themselves or their organisations by maniulating government policy rather than creating wealth or adding value through participating in a competitive market with their services. In other words, this is rent-seeking behaviour.
In particular, with respect to Siblings Australia, leaving aside the wholly offensive association of survivor guilt with being a sibling of a person with a disability (is Kate Strohm really saying that this is an experience similar to having survived the Holocaust?), I really struggle with the tenuous argument that Siblings Australia should be funded as part of the NDIS. The NDIS is designed to support people with a disability, not their siblings. But taking pressure off families with a child with a disability by providing adequate support services to the person with a disability will benefit everyone in the family including the siblings. Making the NDIS administratively easy and particularly, reducing bureacracy of the NDIS, will benefit everyone in the family including the siblings. The NDIS needs to put people with disability first and foremost.
References
Commonwealth of Australia. Joint Standing Committee on the National Disability Insurance Scheme. (2017a). Implementation and performance of the National Disability Insurance Scheme: Wednesday, 26 September 2017: Brisbane (Proof Hansard). Retrieved from http://parlinfo.aph.gov.au/parlInfo/download/committees/commjnt/13474987-53a4-4361-808f-cde5bf241252/toc_pdf/Joint%20Standing%20Committee%20on%20the%20National%20Disability%20Insurance%20Scheme_2017_09_26_5573.pdf;fileType=application%2Fpdf
Commonwealth of Australia. Joint Standing Committee on the National Disability Insurance Scheme. (2017b). Transitional arrangements for the National Disability Insurance Scheme: Wednesday, 27 September 2017: Adelaide (Proof Hansard). Retrieved from http://parlinfo.aph.gov.au/parlInfo/download/committees/commjnt/0087de2c-e6b1-48df-9296-7cd89e470ec2/toc_pdf/Joint%20Standing%20Committee%20on%20the%20National%20Disability%20Insurance%20Scheme_2017_09_27_5575.pdf;fileType=application%2Fpdf
Commonwealth of Australia. Joint Standing Committee on the National Disability Insurance Scheme. (2017c). Provision of services under the National Disability Insurance Scheme Early Childhood Early Intervention approach: Wednesday, 27 September 2017: Adelaide (Proof Hansard). Retrieved from http://parlinfo.aph.gov.au/parlInfo/download/committees/commjnt/3e03052b-243b-48af-83bd-b82b1bb1cd4d/toc_pdf/Joint%20Standing%20Committee%20on%20the%20National%20Disability%20Insurance%20Scheme_2017_09_27_5574.pdf;fileType=application%2Fpdf