Melissa Madsen’s Posthaven

True story from breakfast yesterday ...

What do I purchase from the US? 

Shoes: Due to my disability, I have teeny-weeny feet.  They are roughly a little kids’ size 13, but somewhat oddly shaped.  It is really hard to find good quality shoes in Australia that both fit AND look like adult shoes.  After all, I need reasonably professional looking shoes for work - UGG Boots won’t cut the mustard.  Online retailers in the US like Zappos have a huge range of shoes in kids’ sizes, in well-known and less-known brands.  In some cases, brands that sell in Australia like Columbia, do not sell kids’ sizes in Australia.  Buying shoes online is obviously risky because you cannot try them on, but so far, I have been lucky.  Pictures of shoes from multiple angles help a lot to determine whether the shoes will fit.

Adaptive clothing: Before they closed, Canadian designer Izzy Camilleri sold lovely clothing for a seated frame through her IZ Collection line.  My pair of IZ jeans are one of my favourite things in my wardrobe.  Strictly speaking, these were Canadian purchases, but she offered free / cheap postage within North America, that made ShopMate a good choice to bring these purchases the rest of the way to Australia.

Disability equipment / wheelchair accessories: Here's a few examples of US purchases:

Transfer boards - ADI makes lightweight, durable anti-slip transfer boards that do not look like something that belongs in a nursing home. Also, their pricing is really good at $US46 for a 29 inch transfer board.  A similar product in Australia costs $139 plus $15 for shipping.  

Wheelchair bag - I bought the Bodypoint Mobility Bag through 1800Wheelchair.com.  It is not revolutionary, but is a neat-and-tidy bag that sits unobtrusively under your wheelchair seat.  Permobil distribute this product in Australia, but do not advertise any prices online and do not appear to have any online purchase channels.

Freewheel - The Freewheel is an attachable front wheel for manual wheelchairs that allows you to travel more easily over rough or uneven ground.  I had been considering one of these for a long time, especially for travel to Europe again (one day) to make cobbled footpaths easier to manage, but it was actually a forthcoming trip to Tasmania and Port Arthur that got me over the line to purchase.  

This product comes standard with a pneumatic tyre, but a solid tyre is an option available at extra cost.  I have not had pneumatic tyres on my wheelchair for many years.  Solid tyres, in my opinion, are one of the greatest things to happen to wheelchairs.  For my use, a solid tyre on the Freewheel was essential.  

Again Permobil distribute this product in Australia, but do not advertise any prices online.  I inquired with the local Permobil distributor, and their quoted price was good, but they could not supply a Freewheel with a solid tyre before my trip (they had none in the country), and prices would rise before they could supply the Freewheel with a solid tyre.

So I purchased the Freewheel through Living Spinal. FYI their customer service was excellent - they bent over backwards to facilitate an offshore purchase with a 'foreign' credit card.  I suspect their system was actually set up to prevent the Freewheel being sold outside the US, consistent with an exclusive distribution agreement. But hey ... whatever.

P.S. I negotiated with the local Permobil distributor for them to setup the Freewheel.  It cost $72.

Why do I purchase from the US? 

It is undeniable that prices from US retailers, particularly for anything associated with disability, are often cheaper (and significantly so), even taking exchange rates and shipping into account.  But this is not a determining factor.  I prefer to buy from local distributors when I can.

Availability and ease of purchase are more important factors. There are multiple US online retailers selling disability equipment, with (generally) clear and simple websites, and decent customer service. They treat buying a Freewheel no differently from buying shoes - it’s a transaction between customer and retailer. The retailer has a vested interest in it going well, as this encourages the customer to come back. If it’s too hard to make a purchase, the customer will go elsewhere.

By contrast, some of the items purchased above were simply not available from Australian retailers, were not available when I needed them or with the options I needed, it was hard to discover how much the item would be, or just simply too hard to arrange the purchase in the absence of online channels.  For example, Permobil does not appear to publish prices on its website (even for the Bodypoint bag), and has no option for online purchasing.  However, if I want to purchase a Bodypoint bag or a Freewheel from an Australian distributor, Permobil is the only option. 

What does this mean for the NDIS? 

Thin markets are defined as markets with a low number of buyers and sellers.  Thin markets are of particular concern in areas of high-needs disability support where state governments have withdrawn from the ‘market’ as a service provider of last resort.  But even in areas of more mundane disability equipment, thin markets are still evident.  It is clear that the number of sellers for some disability products is small (e.g. Permobil is the sole retailer in Australia for some brands), and the number of buyers is also relatively small. 

Frustration with the absence of published prices, the inability to buy online (or even easily in person without taking a day off work) and the lack of a customer service culture in local disability retailers encourages me to buy smaller items offshore. But purchasing offshore provides no incentive for Australian sellers to expand or improve their services (e.g. open up new purchase channels such as online storefronts), and does little to support the expansion of Australian disability retailers. The significant combined purchasing power of NDIS participants, however, has the potential to radically change disability service markets in Australia, if NDIS participants decide to exercise that power and demand competitive and transparent pricing as well as decent customer service from the local market.

The NDIA has a very specific "role in encouraging a healthy and diverse market place for disability services and supports (market stewardship)." See NDIA market approach. With the federal government imposing constraints on offshore purchases via the extension of GST to low-value purchases, people with disabilities have a renewed interest in a strong and competitive local disability market. Disability retailers have a great opportunity to expand their businesses. Surely these interests can converge in a way that benefits everyone. In the meantime, I will be paying GST via ShopMate and/or re-opening my MyUS.com account.

I have written previously on the NDIS and technology in relation to what supports are funded and who gets funded (see here). But what about how the NDIS is deploying technology to support administration of the scheme? 

My day job is managing a team who support an enterprise-wide student information system in a university, so I have some knowledge of how intelligently applied technology can benefit organisations with processing high volumes of enquiries and/or transactions. Indeed, sometimes small changes can reap the big benefits, e.g. adding a column to a report, reducing the number of 'clicks' to enter data into or extract data from systems.

Discussions at the Senate Estimates hearing of the Community Affairs Legislation Committee on 25 October 2017 highlight two uses of technology in administration of the NDIS:

1. Nadia

Nadia, the NDIS's proposed virtual assistant, to be voiced by Cate Blanchett has been heralded with much fanfare as providing a significant cost-saving to the NDIS, presumably by automating level 1 queries from participants through an AI-enabled chatbot.  

Press reports (e.g. ABC News here) cite spending of of $3.5 million for Nadia to September 2017. However, National Disability Insurance Agency CEO, Robert De Luca told the Senate Estimates hearing of the Community Affairs Legislation Committee on 25 October 2017 that:

Nadia, from our perspective, has been in a holding pattern until we complete our pathway work to ensure we know exactly how to best utilise the Nadia technology as we move forward. (2017a, p48)

This might be a tactical decision to delay implementation of ambitious technology in a highly politically sensitive program, when recent government IT failures (particularly Centrelink's robot-debt debacle) are so fresh in the media's minds. (See articles here and here linking Nadia with 2016 #CensusFail and Centrelink robot-debt.)

Or it may be that the National Disability Insurance Agency is genuinely unsure how to use this bright, shiny new technology. 

Either way, the National Disability Insurance Agency confirmed in December 2017 by way of responses to questions on notice that:

The National Disability Insurance Agency’s spend on Nadia from August 2015 has been $4.5 million and includes: human resources, academia, vendor and technology partner services. (2017b, emphasis added)

2. Draft plans

Meanwhile, participants cannot see a draft of their NDIS plan before it is finalised, as a technical change is required to systems to permit this, prompting this almost unbelievable exchange at the Senate estimates hearing:

Senator SIEWERT: What they want to see is the draft. Will they see the draft?

Ms Gunn: It needs technical change to the system to enable us to do that. They will see the way the plan is constructed in the planning conversation, which they currently are not doing.

Mr De Luca: Yes, they will see a draft of the plan.

Senator SIEWERT: From now? Not just in the pilots, but across the board?

Mr De Luca: There are two elements to it. One is that in the conversation with the participant they can visually see that with a laptop or a computer before it's finalised. That's the first thing. The second is that the system works so they can review it at their own leisure. The second part does require some systems work. 

CHAIR: What is the timing of that second part?

Mr De Luca: I can't comment on that.

Senator SIEWERT: Why can't you put it in a PDF and email it to them?

Ms Campbell: We're talking about some of those logistical challenges—if there were someone visiting, without a printer, something like that.

Mr De Luca: If you think about a situation where a planner and local area coordinator has gone to someone's house in a regional or remote area, or wherever they may live, the process would be to walk through the plan with them, make sure they understand it, see it on a system. There may be difficulties in printing it at that point in time. They may not have a printer at their house, or there may be technology challenges in being wi-fi enabled. There are lots of different challenges that mean we can't say 100 per cent that we'll see it at a point in time and be able to print it. The process being put in place, though, is the expectation that when a planner leaves the room or person's house or a meeting room, the participant understands what's in their plan. Then they will have visibility of that online in the portal. (2017a, pp61-62, emphasis added)

Let's be clear that this should not be a significant technological challenge in 2018, with or without wi-fi. If nothing else, there are portable printers on the market that could be used to print draft plans, e.g. Canon's iP110. Indeed, I had a salesman visit me last week, and after a discussion, he prepared and printed a quote for me using a similar printer. 

The challenge for the NDIS is to amend their systems and business processes to handle the requirement to provide draft plans to participants for meaningful feedback and review, whilst at the same time managing the workload of thousands of plans at different stages in a complex workflow. 

But again, this is not a new problem, nor one that has not been solved by other organisations in the past.

The National Disability Insurance Agency confirmed in December 2017 by way of responses to questions on notice that:

The initial pilot of the revised pathway will see a new style of planning meeting being tested between a participant, Local Area Coordinator (LAC) and National Disability Insurance Agency (NDIA) planner. The pilot will include enabling participants to see a working draft version of their plan as it is being developed and have the opportunity to ask questions and provide feedback during the planning meeting. This is to allow for any queries to be discussed and addressed before the plan is finalised. The initial pilot will commence in mid-December 2017, with early communications and training for LACs and NDIA planners, followed by the new face-to-face planning approach commencing in late January 2018. (2017c, emphasis added)

References

I turned 50 years old in December 2017- my partner says this makes me a 'crip elder' - and I decided to treat myself to two birthday presents that will hopefully make some everyday activities a little easier.  One is an Apple Watch; the other is a FreeWheel, a large wheel that attaches to the front of my wheelchair, allowing the chair to be pushed over rough and uneven terrain. 

Here's my first of two posts giving my initial thoughts on one of these purchases - the Apple Watch.

What did I buy?

I bought the Apple Watch Series 3 Space Grey Aluminium Case with Grey Sport Band, 38mm without cellular connectivity. This is effectively the series 3 base model, which requires an iPhone for internet and network connectivity. 

I opted for the model without stand-alone cellular connectivity, given that Telstra was not yet supporting eSIMs in Apple Watch for iPhones on business accounts (my employer supplies my phone). 

What did I hope to achieve?

I had two hopes with the Apple Watch: 

1. Be able to make and answer phone calls and send text messages more easily; 
2. Be able to make over-the-counter electronic payments more easily. 

And the results so far are pretty good.

Making phone calls / sending text messages

Making over-the-counter electronic payments

A lack of manual dexterity means I face a lot of difficulties handling cash (my wallet is hard to get out like my phone, coins and notes are fiddly), and putting a PIN into EFTPOS machines, so I changed by debit card to one which can be used for contactless payments recently with the aim of going cashless.

However, getting a debit card out of my wallet is still a challenge for the same reasons, so the ability to pay for small purchases (e.g. coffees) with a device on my wrist would be a huge step forward.

However, only one of the four major Australian banks currently supports ApplePay and it's not my reguar bank. So my first step was to open an ANZ bank account and arrange for a small regular deposit of 'spending money' to go into it. 

Once the account was set up and linked to my iPhone / Apple watch, paying by Apple Watch is reasonably straightforward - it requires double-clicking on the side button at the same time as holding the watch close to the EFTPOS terminal. It took a few practices though and I endured a few exasperated looks from shop owners. But it is still easier than getting an actual card out of my wallet.

Payments are processed like credit card payment using PayPass or PayWave though, which means that some retailers add a credit card surcharge for the privilege of paying with Apple Watch. On these occasions, getting out a card and putting in your PIN might be the better option on these occasions.

Verdict?

The Apple Watch has been successful for both making phone calls and sending text messages plus making over-the-counter electronic payments more easily, and with greater use and practice, I expect use to get easier. In addition, the Apple Watch has other apps that come in handy - weather, fitness tracker etc. 

However, the price will be considerable entry barrier for many disabled people, if not most, given that an iPhone is also required. Apple is still selling the Apple Watch 1 at a lower price, but without Siri, so without the ability to use voice commands.

• "Don’t ignore the mobility scooter. It may just be the future of transport", accessed on 22 October 2017. Also "Meet the Mavericks", accessed the same day.
• "Toyota Concept-i Ride makes mobility easier for disabled drivers", accessed on 22 October 2017.

The first article suggests the future of transport might be small-footprint, personal and electric devices, like mobility scooters, but that infrastructure, legislation and planning are already starting behind the 'eight-ball', and would need to work quickly catch up, but there is no sign that this is occurring.  

The second article highlights a small, electric concept vehicle developed by Toyota to be displayed at the Tokyo Motor Show in 2017, reinforcing the first article's point. Vehicle manufacturers are thinking about and starting to develop small, electric vehicles, and in this case, a vehicle designed for wheelchair users.

Battery and electric motor technology certainly seem to be advancing at a pace to offer some good opportunities.  Just look at the proliferation of power-assisted bicycles, unicycles, skateboards and hoverboards.  But in most cases, legislation is slow to catch up and the legal status of these devices is unclear at best, and unlawful at worst.

So what is already on the market for people with disabilities, particularly people using manual wheelchairs needing an electric boost from time-to-time?  There are a number of products that fall into two broad categories:

• Devices that transform a manual wheelchair 

• Alber e-motion and twion power wheels. Cheesy, but informative, video can be seen here. WARNING - it contains wheelchair dancing!
• Max Mobility SmartDrive MX2+. Slickly produced video can be seen here.
• Spinergy Inc. ZX-1 Power Add-On. Video can be seen here.

• Attachable handbikes

• Batec
• DaVinci Mobility
• Pro-Activ
• Quickie
• Rio Mobility
• Speedy
• Stricker
• Team Hybrid
• Triride

It’s true that the price of our products can vary depending on the market. There are many reasons for this and they differ in each case but are normally associated with the cost of transporting and importing the products to the country in question and with the structure of the local technical-aids sector. So, for example, in Spain orthoshops are authorised to sell technical aids, while in other countries these products are provided to users by the state directly. Likewise, in some countries there aren’t any government subsidies to help cover the cost of purchasing these products, like Spain, while others like Australia do offer this type of aid. [emphasis added]

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

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]

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.

• 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.

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.)

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.

References

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