What happens when someone stomps right through your community?

Sooo if you haven't been living under a rock for the past month or so, you would probably have seen the flaming dumpster fire that is Twitter at the moment.Thanks to a certain persons management style, there has been a steady flow of people leaving Twitter (or at least starting to look towards leaving) for alternative services like Facebook and I think the biggest winner, Mastodon.&nbsp;As with all event driven migrations, this has meant the breaking of communities. Twitter, for all its faults (and there is probably a tele-novella in listing all of its faults) allowed people to form communities within the greater community. We have <a href="https://en.wikipedia.org/wiki/Black_Twitter">Black Twitter</a>, <a href="https://twitter.com/hashtag/queer">Queer Twitter</a> and the focus this post, <a href="https://twitter.com/hashtag/disability">Disability Twitter</a>Each of these communities has grown over the 16 years that Twitter has been in operation. People found each other, found a space to discuss issues important to them, and yes found a space to advocate for themselves to a wider world. I mean the fight against Robotdebt started and was organised on twitter by people such as Asher Wolf. We have the Disability Royal Commission in Australia being live tweeted by dedicated people like <a href="https://twitter.com/bluntshovels">El Gibbs</a> and organisations like <a href="https://twitter.com/PWDAustralia">People With Disabilities Australia.</a>Even just a space to say “Well this sucks” and have someone else recognise exactly what you're talking about.Now, it's all under threat. As I said, people are leaving for other services. I setup a masto account ages ago and I find myself there more and more. I stay on twitter mostly to keep up to date with the news, and honestly to stay in contact with the disabled community there (there's a whole other post about me getting to the point where I need to do that).I've spoken to people who are tired. They don't have the energy to pick up and move their virtual lives to an unfamiliar system. Masto is great, however it's NOT Twitter, it doesn't have the same organic search and there are a whole lot of issues with how the federation works. There are people who aren't tired per se, but the learning curve for another system combined with community inertia means they're not going anywhere fast.&nbsp;So you end up with a split community. You end up with people missing out or having to spend twice the amount of energy to keep up with both communities.And that's not even throwing in the mental energy and burn out as an emboldened far right targets minority communities.Sigh.It's all perfectly terrible and I don't know the answer. I'll be on Masto AND Twitter for the foreseeable future, but really who knows what that's going to bring.

The Twitter Fracas and the Disabled Community

Soooo, this has not been a good year for data leaks/hijackings/ransoming/etc in Australia.

Soooo, this has not been a good year for data leaks/hijackings/ransoming/etc in Australia.Of course the biggest by far this year was the Optus hack, with a purported 9.8 million customers and former customers possibly affected. The details nabbed by the hacker/s include names, addresses, date of birth etc. In fact for some Optus customers those details also included their Medicare, Drivers License and Passport numbers, forcing them to get new <a href="https://www.optus.com.au/support/cyberattack/medicare-card-number-information">cards</a>, <a href="https://www.optus.com.au/support/cyberattack/driver-licence-information">licenses</a> and <a href="https://www.passports.gov.au/news/optus-data-breach">passports</a> issued.Leaving Optus aside, there has been a rash of data breaches, both intentional and accidental. From iCare (the NSW Government Insurer) accidentally mailing out the details of 193,000 claimants to the <a href="https://www.governmentnews.com.au/icare-launches-systems-review-after-193000-claimants-affected-by-privacy-breach/">wrong companies/insurance brokers</a> to the deliberate hack of CTARS (a cloud based client management system for health related businesses) and the announcement that it considers all of its data <a href="https://www.innovationaus.com/sensitive-ndis-health-data-breached-in-client-platform-hack/">potentially compromised</a> (including the personal and medical details of the clients being managed by CTARS customers).Oh and of course there's todays announcement that someone is demanding that <a href="https://www.smh.com.au/technology/medibank-hackers-threaten-to-release-stolen-health-data-in-ransom-demand-20221019-p5br2s.html">Medibank Private pay up</a>, or they'll start releasing the medical details of influential people gained through a recent hack.<blockquote>“We offer to start negotiations in another case we will start realizing our ideas like 1. Selling your Database to third parties 2. But before this we will take 1k most media persons from your database (criteria is: most followers, politicians, actors, bloggers, LGBT activists, drug addictive people, etc) Also we’ve found people with very interesting diagnoses. And we’ll email them their information.”</blockquote>The last one is interesting and concerning (well they're all concerning) for PWD. The actual threat is is to weaponise the information they claim to have stolen (the SMH hasn't been able to verify at this point whether they have the data). This means taking the most personal information about a person and releasing it in a manner that person has no control over.For a group of people who traditionally have NOT had great experiences with privacy in the past the thought of someone just dumping their entire medical history on the net for anyone to see is extra confronting.The CTARS incident also highlights something for me. The NDIS has spawned a mini eco-system of third party providers all aiming to help make things easier for either the participants themselves or those who look after them (CTARS being a good example as many of their clients are NDIS providers). These providers have access to so much information about the participants, from medical conditions, through to enough information on the participants NDIS plans that IF someone got hold of it, they could do some serious damage.I had a look around the intarwebs this evening to see if I could find anything about standards for data storage and security that the NDIS might impose on providers but I couldn't find anything immediately. I will keep looking, but the closest I've found is this - <a href="https://www.digitalhealth.gov.au/healthcare-providers/cyber-security">https://www.digitalhealth.gov.au/healthcare-providers/cyber-security</a> - which seems to be aimed more at the management level and definitely doesn't seem to hold a &nbsp;“You must do this” EXCEPT when referring to the various bits of privacy legislation.I've hammered this out late so might have to tidy up, but will definitely be following this up, because I KNOW there are a lot of PWD who are really worried right now.

Data leaks and PWD

Abandonware sucks when it's your TV, imagine what it feels like when it's your Eyes

Waaaay back in february I saw this <a href="https://spectrum.ieee.org/bionic-eye-obsolete">article</a> and I always meant to get back to it, because it's a story that goes to the heart of the intersection of disability and tech.What happens when the tech people have become reliant gets abandoned?In the tech world, stuff gets abandoned all the time. Google is particularly famous for throwing a whole lot of tech against a wall to see what sticks, and if it doesn't stick they abandon it. Your average tech geeks house is probably filled with old devices that the manufacturer either doesn't support anymore, or in fact has gone completely out of business.&nbsp;It's one thing to find that your favourite tech gizmo stopped being supported ten years ago, because you feel confident enough to try and jerry-rig a solution when it starts playing up. How would it feel if the tech gizmo in question, was in fact your artificial eye?That's the story here. The company Second Sight was the manufacturer of a visual implant system know as the <a href="https://en.wikipedia.org/wiki/Argus_retinal_prosthesis">Argus Retinal Prosthesis</a>. It was available across the globe and for many visually impaired people it provided an improvement to their vision that raised their living standards. Starting in 2002, Second Sight provided the Argus I and its successor to anyone who could pony the $150,000 USD.Things seemed to be going swimmingly for all concerned. Second Sight was providing support for the devices, more people were getting them implanted and so on. That is until 2020 when Second Sight hit the wall. They'd stopped installing new Argus Implants in 2019, but were still committed to supporting the existing devices, until in 2020, they suddenly weren't. Instead they were facing bankruptcy and so pulled the plug (so to speak) on support leaving the existing users of the implants high and dry.Second Sight is looking to merge with another company called Nano Precision Medical, however that new entity is investigating implants for drug delivery rather than implants for the visually impaired.So now there are several people out &nbsp;across the globe who are literally stuck with abandonware in their heads. There's a bit of a grey market where people are trading parts but the fact is that eventually every single one of those implants is going to fail at some point. They will then have to be removed at the users expense.I'm not super up with the protections offered to consumers of medical devices, however I'm not sure if we have a system to account for this sort of situation. What protections are there for consumers of these sorts of devices? Who is responsible for mapping out a plan to support them or migrate them to another system or no system in the case that their supplier goes poof?Like I said, it's one thing to have a cupboard full of old abandoned tech gear, it's another to lose your vision again because a company disappeared.

How do you deal with Abandonware?

When you're someone with a mobility issue, finding a home to accommodate you can be nigh on impossible.

It may not register as a tech hot topic, but your home is by default one of the biggest and most important bits of technology you can interact with, and no I'm not going to be talking about smart home tech, just the tech that goes into the buildings that we live in.Just how important housing design is was brought home (hah!) to me when we started looking for a new place to live for when I would come out of hospital. At the time we were living in an early 2000s townhouse (bedrooms and bathrooms upstairs) just a few minutes from the centre of town and Dapto Station. It was perfect for the kids to get to school and we had been planning to stay for a long time (in fact we’d been there three years when I got sick).However a town house was not going to be suitable for me anymore. While I had managed to struggle up and down the stairs before my surgeries, afterwards it quickly became obvious that our perfect little townhouse was now mount everest as far as I was concerned. So my wonderful, awesome wife began the task of finding us a new home. One that not only was a single level but one that allowed me to get in the front door (or in fact ANY of the doors) in my shiny new wheelchair.84 houses later and she finally found a place that was the right combination of open enough AND with a landlord who was willing to allow modifications so that I could wheel into the house via a ramp in the garage.Housing and housing technology has such a huge impact on People With Disabilities. As an example. When we moved into our new place we asked for and got permission from the landlord to have a ramp built in the garage and the bathroom modified to have hand holds installed in the shower stall. The ramp was built without an issue, and I can happily wheel into the house in either my powered or manual chair.&nbsp;I still don’t have any hand holds 2+ years later because the house - a newly built, metal framed construction - can’t support them. There is literally nowhere that we can anchor the hand holds that won’t bend or buckle under use (and no, while I am a chunky guy, it’s not a weight thing, the individual frames do not have the ability ).Now luckily I haven’t needed them yet, and fingers crossed it’s going to be a while before I do. However for others who DO need handholds in the bathroom, the elderly, others with mobility issues, it presents a real and present problem. Because no hand holds means higher chances of falls. Higher chances of falls means more risk of injury, which could lead to permanent reduction in mobility.Fixing the hand holds problem in a new metal framed house becomes more complex and expensive. It means that what used to be a simple task of find the frame and attach handhold to it now becomes, remove the bathroom wall, insert new bracing, reattach bathroom wall, wait for that to settle, THEN we can attach the actual hand holds.Throw in other accessibility issues like corridors and doorways that are too narrow for a chair, toilets that are just plain inaccessible and even surprise stairs in otherwise single storey houses (that one knocked out otherwise great houses in our search) and you’ve got an uphill battle for people with any sort of mobility issue.There is a project called&nbsp;<a href="https://www.buildingbetterhomes.org.au">Building Better Homes</a> to try and get some real accessibility standards included in the National Building Code. It succeeded in getting the changes (at least the Silver level requirements) included in the National Construction Code. These requirements are:<ul><li>At least one step free entry into the house</li><li>Internal doorways and hallways that “facilitate comfortable and unimpeded movement between spaces”</li><li>A toilet on the ground floor that provides easy access (ie not just tucked in behind the laundry)</li><li>A bathroom that contains a hobless shower (important as even small rises can be trip hazards)</li><li>Reinforced walls around the toilet and bathroom. This is so those hand holds I spoke about before can actually be installed if necessary</li><li>Stairways designed to reduce the likelihood of injury and provide for future adaptability</li></ul>Huzzah!Except not quite. Acceptance of these standards is up to the individual states. Western Australia, South Australia and New South Wales have all refused to sign on to the new requirements, citing increased costs as the primary reason for doing so. Which means that new builds are still being thrown up that present challenges to people with mobility issues.Sigh.Let’s face it, finding a place to live in 2022, especially as a renter, is hard enough. Trying to find a place to rent as a person with a disability can be impossible.

Housing and technology

Tech, Disability and RSS Feeds, oh my!

So as you may have noticed, I fell off the tech and disability blogging thing pretty quickly. Which is both bad and completely within character for me.So, sorry about that.Now that I've kind of got things under control with the site again (though there will be more changes of course) I do want to get back into it, both the blogging and the plans I had for other multi-media work (video, audio etc).The issues still remain, galloping tech innovation can both be boon and a bane to People With Disabilities (sometimes both at the same time). I want to talk about the issues and have a look at what People With Disabilities are doing themselves in this space, both in terms of activism as well as driving the innovation that happens.I won't promise that I'll be super regular when it comes to posting, but I will try and do better this time :)Oh and one more thing. I've added an RSS Feed for Tech And Disabilities articles. That's right we're going to party like it's 2009!You can find the feed here: <a href="https://angrybeanie.com/feed/tech-and-disability-feed.xml">https://angrybeanie.com/feed/tech-and-disability-feed.xml</a>

Where to for Tech and Disability

Tech and Disability

Where I examine the intersection between technology and disability. The good, the bad and some of the very bad.

So welcome to the first draft of Tech and Disability, a blog thingy that I’m going to be using to talk about … well, Tech and Disability?

So welcome to the first draft of Tech and Disability, a blog thingy that I’m going to be using to talk about … well, Tech and Disability?The plan is to not only talk about issues facing People With Disabilities (PWD) when using tech, or having tech developed for them, but also do reviews of the tech that PWD use.I also want to hear stories from other PWD about how they’re using technology, or how the tech has let them down.You can ping me on twitter (<a href="https://twitter.com/angrybeanie">@angrybeanie</a>) or email me at tad at angrybeanie dot com

Welcome to TAD

So I figured before I would get into talking about the world of tech and disability I should actually list out the tech I use to get through my day.

So I figured before I would get into talking about the world of tech and disability I should actually list out the tech I use to get through my day.<h2>What is my disability?</h2>I am what’s called an incomplete paraplegic. I didn’t injure my spine in an accident, instead I had something called a “Spinal dural arteriovenous fistula”. This fistula expanded and blocked blood supply to my spinal cord, which caused me to lose the ability to walk without technological assistance as well as issues with losing sensation, toileting and so on. Basically if it’s below my waist it’s a bit buggered.Oh and to add to the mess I have a shoulder which likes to dislocate itself. I’ve dislocated it twice in my sleep and it used to be a cool party trick when I was a kid to pop it out and back in to gross people out.<h2>What I use</h2>Walking FrameAs I mentioned above, I can walk a little with a frame. The frame I use is a Coopers Non-Folding Walking Frame (Tall). One of the challenges I face is that when I stand up straight, I’m actually 194 cm tall. This means that the vast majority of frames are too short for me.<img class="image_resized" style="width:25%;" src="/uploads/IMG_9954_small_4219db3599.jpg" alt="IMG_9954_small.jpg" srcset="/uploads/thumbnail_IMG_9954_small_4219db3599.jpg 104w,/uploads/small_IMG_9954_small_4219db3599.jpg 333w,/uploads/medium_IMG_9954_small_4219db3599.jpg 500w,/uploads/large_IMG_9954_small_4219db3599.jpg 667w," sizes="100vw">The woollen holder you see was made by my wife to help me carry bottles and other things around.Manual WheelchairGiven that I’m very limited in my ability to walk, I have a manual wheelchair to get me around. This allows me to do short trips around the shops and to the doctors. However due to my dodgy shoulder it’s meant to be more of a backup than an every day thing.<img class="image_resized" style="width:25%;" src="/uploads/IMG_9958_small_ecae6cd6e3.jpg" alt="IMG_9958_small.jpg" srcset="/uploads/thumbnail_IMG_9958_small_ecae6cd6e3.jpg 234w,/uploads/small_IMG_9958_small_ecae6cd6e3.jpg 500w,/uploads/medium_IMG_9958_small_ecae6cd6e3.jpg 750w,/uploads/large_IMG_9958_small_ecae6cd6e3.jpg 1000w," sizes="100vw">Power WheelchairMy power chair is what my OT would prefer I use in an every day setting. It’s a magnificent beast, able to travel up to 8km/h for a distance of around 16km. Sadly, more due to my height than my weight (though that does have to shrink), we can’t get it in the van. Because I’m 194cm tall, my chair has to be tall, this means that when I use a wheelchair cab, I need the Hiace models with the high ceiling, and even then I scrape my head on the boot door. So it gets out and about when I’m going around my neighbourhood, but for outings further afield it sits there.<img class="image_resized" style="width:25%;" src="/uploads/IMG_9969_small_6fc3361276.jpg" alt="IMG_9969_small.jpg" srcset="/uploads/thumbnail_IMG_9969_small_6fc3361276.jpg 104w,/uploads/small_IMG_9969_small_6fc3361276.jpg 333w,/uploads/medium_IMG_9969_small_6fc3361276.jpg 500w,/uploads/large_IMG_9969_small_6fc3361276.jpg 667w," sizes="100vw">Power BedIt’s essentially a hospital bed but fancier. It moves into different positions (which really help when I have neuropathic pains and leg spasms), it vibrates and it even has usb chargers built in. There are times when the only time I get any relief from the neuropathic pain is when I’m lying down in this bed. It frustrates the hell out of me but there it is.I was going to post a picture but I haven’t made the bed yet&nbsp;ToiletingOkay this might be considering TMI, but this is a blog about tech and disability. One of the problems I have care of the fistula, is the inability to go to the toilet, so I am now dependent on what’s called Intermittent Self Catheterisation. That means I need to rely on single use plastic catheters when I go to the toilet. Without them I would need to rely on glass catheters, or a permanent indwelling catheter, both of which increase the risk of bladder infections.Don’t worry, I won’t be posting picturesGoogle HomeLastly I use a Google home device in the bedroom. I’ve connected up my bedside light with a Genio light bulb and use either the Google home app on my phone or tablet, or voice control to turn the light on or off. This may not seem like much, but moving in bed can be quite difficult so it does make things easier.All the restAside from the above I use every day technologies just like everyone else. I have a phone, a laptop, a smart watch and so on and so forth. My use of these items isn’t much different to an able bodied person (though I have to say, step goals just aren’t a thing anymore)So that’s a snapshot of what I use to get me through my day. It’s not everything, I also have an office setup, which allows me to work from home (I’ll detail that in another post), and I’m starting to get some tech to help in the kitchen and around the house. &nbsp;&nbsp;

My Tech 

Technology is bad, but what if it can be good at the same time?

When I was in the Prince of Wales Spinal Rehab Unit (awesome place by the way, professional staff, great nurses, terrible food) I noticed this sign up in all the rooms.<img class="image_resized" style="width:50%;" src="/uploads/IMG_20191030_104353_scaled_7a56e47d51.jpg" alt="A sign on a hospital wall. It features a smiling nurse with the text &amp;quot;Hey, I'm Alexa. I'm here to help. Need help with something? Just say 'Alexa tell the nurse...&amp;quot; and then a range of options" srcset="/uploads/thumbnail_IMG_20191030_104353_scaled_7a56e47d51.jpg 245w,/uploads/small_IMG_20191030_104353_scaled_7a56e47d51.jpg 500w,/uploads/medium_IMG_20191030_104353_scaled_7a56e47d51.jpg 750w," sizes="100vw">Above every bed in the ward there was a small Alexa device waiting for patients to ask it for help. You could ask it for the usual Alexa stuff, time, date play a free radio stream and so on. But they also custom commands set up. If you wanted to the nurse, you could either press the nurse call button or you could tell Alexa exactly why you wanted them.Usage varied. Some people ignored them or asked for them to be turned off (the ward was happy to do so), others were more than happy to use a system which meant that they didn’t have to mash a giant button to call a nurse.I’m not kidding about the giant button by the way. For people with limited upper body movement, the large buttons were much more practical to use than the normal nurse call system. They looked a bit like this but red.&nbsp;Anyway, people used the Alexa systems to call the nurses, check the time, listen to radio and a range of different things.I never really used it myself, upper body motion was fine and I had my own devices to entertain me.However it did get me thinking about how useful these devices can actually be for people with disabilities. I myself have one setup at home so I can use it to turn out my bedroom light, listen to the radio, play music and so on. As part of a home automation system it can provide a person with a disability an interface to their home that they may not have through a touch system. The potential is great.However there is an issue with the use of these voice assistants. Privacy. By their nature they are listening devices and they are always listening. What control do we as consumers have over the data they collect? At home they are privy to all conversations near their location, in hospital those conversations will include medical information.This is a big part of tech and disability. We have to find the right balance between the benefit and the cost. For these voice assistants, the benefit is clear, they offer a relatively easy interface for everyone to access systems and information. The cost (outside of the material cost) is of course something to be determined.The intersection between big tech and disability is a growing one and one that needs proper oversight, especially from PWD themselves. So part of my job I think is to try and shine a light on it.&nbsp;&nbsp;

Alexa, fix my disability

Google wants to be your complete health record

So, waaay back in 2008 Google played around with the idea of creating an<a href="https://www.nytimes.com/2008/05/20/technology/20google.html"> all encompassing health record</a>. The idea was that it would be THE record that patients would carry with them, moving from provider to provider and ensuring that they had the most complete record of all their health interactions possible.That effort didn’t really<a href="https://www.computerworld.com/article/2509515/why-google-health-failed--too-little--too-soon.html#:~:text=Google's%20online%20personal%20health%20record,failed%20to%20gain%20widespread%20adoption."> pan out</a>. Between a lack of take up outside of the geeky set and an inability to connect with major health providers, Google did what Google does and shuttered the service in 2012.Well they’re back at it. Announcing a<a href="https://www.statnews.com/2021/04/09/google-health-records-app-care-studio/?utm_content=buffer42abb&amp;utm_medium=social&amp;utm_source=twitter&amp;utm_campaign=twitter_organic"> new program</a> to get user feedback on a potential new Health Record system being developed by Google. It’s a small program, only 300 participants at the moment, but given the amount of health data flowing into Googles data lakes via Google Fit and Fitbit, I really don’t see them backing away from this any time soon.Google isn’t the first to play in this area, Apple is doing it, there are literally dozens of startups all trying to get into this space. I mean even the Australian Government has given it a<a href="https://www.myhealthrecord.gov.au/"> red hot go</a>.Look, the idea of a single record that a patient can carry with them that contains ALL of their history is very attractive, especially for people with disabilities (who tend to have complex medical histories). The ability to say to a new doctor “here it is, now you have all the information at your fingertips” would smooth things over so much.But the dream is often very different from reality as can be seen from the roll out of the My Health Record project in Australia. Leaving aside issues around access and data sovereignty, the My Health Record system still suffers from a lack of medical sector buy in, with even some public hospitals not integrating with it.When evaluating any of these projects we need to ask ourselves these questions:Who or what is the product?Companies exist to make money. That is not a controversial statement (well at least it shouldn’t be in 2021). So how are these companies going to turn a profit? How are they going to pay for holding that data, working with all of the various different providers and above all ensuring that the data is held securely?This is really important because if you’re not paying for it, then the company offering the service is making money in some other way. Which leads into..Who’s data is it?The ownership of patient data is a tricky one, at least here in Australia. Technically, all patient records belong to the medical organisation that generates them, NOT to the patient. How does this affect us IF Google or another Health Record provider decides to pay for access?What rights do you retain over any data that you voluntarily put into the system? Can you leave with all of your data? What are the regulations around the storing of this sort of data?Where is the data stored?Different countries have different regulations about how and why different groups (such as law enforcement) can get access to data stored by private companies. Location will also have an affect on how much you can push back IF you find your data being misused.Like I said, the ideal is great. But we need to be really careful about who controls the record. Because if we lose control now, then we’re never going to get it back. There needs to be a much larger discussion around standards and the rights of the patients than I think there has been up until now.

Google wants to be your complete health record

“Good news, disabled Australians! You’ll soon be getting an app that will implement a welfare compliance regime designed by the people who brought you robo-debt. But don’t worry, it’ll have blockchain.” – Stilgherrian in <a href="https://www.zdnet.com/article/ndis-gets-a-government-app-with-blockchain-but-no-ethics/">Full tilt</a>Remember when I spoke about the need for disabled people to be front and centre for the development of technology which is nominally all about them?This is a great example of what happens when they’re not.According to tech journo Stilgherrian, the National Disability Insurance Agency is going to push ahead with rolling out an app they piloted in 2018. This app we’re told is going to use the magic bean known as blockchain to provide “smart money” that would allegedly make the whole process of dealing with service payments (including working out whether the service is valid under the user plan) much easier for everyone involved.The pilot was a partnership between the federal governments Digital Transformation Agency (DTA) and the Commonwealth bank. According to their <a href="https://www.dta.gov.au/help-and-advice/technology/blockchain/do-you-need-blockchain/blockchain-case-studies/blockchain-case-study-commonwealth-bank-and-ndis">case study page</a> the use of blockchain was an arbitrary decision based on the desire of the DTA to have a play around with it.“CBA and CSIRO’s Data61 had wanted to test the potential of blockchain to enable smart money for quite a while. We were also interested to see how blockchain technology may be able to integrate with existing payments technologies, such as Australia’s New Payments Platform. The NDIS contains highly personalised budgets and payments, making it a good case study for our project.”Leaving aside the fact that the use of blockchain in the app appears to provide no real benefit to the user.“We found that a centralised database and our smart money proof of concept could achieve a similar front-end user experience.” – <a href="https://www.dta.gov.au/help-and-advice/technology/blockchain/do-you-need-blockchain/blockchain-case-studies/blockchain-case-study-commonwealth-bank-and-ndis">DTA Case Study</a>The app itself has issues for people who self manage. One of the state benefits of self management is that you are not limited to NDIA approved suppliers for services. You pay out of your own funds or submit an invoice, connect it to your goals and then it’s verified by the NDIS and paid out. At the moment this is a bit of a clunky process not helped by the fact that the NDIS payment gateway isn’t the best designed system in the world.The app on the other hand, seems very much guided towards pushing self managed people towards NDIS approved suppliers only (especially as because it has a token based payment system). They even note this in the Commonwealth Banks <a href="https://www.commbank.com.au/content/dam/commbank-assets/business/industries/2018-11/making_money_smart_report.pdf">own report</a> (PDF)“However, general providers of services, such as home cleaning business, may have lower incentives to pre-register, as only a small proportion of their income may derive from the NDIS.To overcome this issue, it may be possible to establish a graduated registration process, whereby for small transactions, service providers and/or participants could register the service in the moment, by manually entering the details and providing the service provider’s bank account information. As service providers generate more revenue from the NDIS, or experience repeat custom from NDIS participants, they could then be required to more formally register their services.”Now don’t get me wrong. The NDIS plan management site drastically needs a rebuild. Its not obvious how much money you have left in each of your categories, attaching documents to payments requests means they appear to disappear into the ether and all in all it’s just slightly rubbish.However what we’re getting is UI/UX improvements combined with an experiment that even the DTA and Commonwealth Bank admit doesn’t give any real world benefit to the user, and appears to be borderline as to whether it gives any backend improvements over other approaches.Given the apparent desire to push self managed participants towards NDIS approved only and to in fact capture more providers in the NDIS token system, I really get the impression that the app and systems behind aren’t being built primarily with participants at the centre, but more the desires of the NDIS.Combine this with claims of <a href="https://www.thesaturdaypaper.com.au/news/politics/2021/04/10/robo-debt-public-servants-now-shaping-the-ndis/161797680011420#hrd">robo-plans</a>, “NDIS Razor Gangs” and so on, and you’ve got a whole bunch of people worried that this is going to be the start of a process that is going to reduce people with disabilities to numbers on an excel spreadsheet to be pushed around as needed to make the bottom line look good.

Blockchain is never the answer

Striking a balance between Autonomy and Safety

<blockquote>InteliCare’s 24/7, in-home technology gives you smart insights, direct to your phone, that helps detect and prevent falls and health issues before they happen.</blockquote>That’s the pitch given by<a href="https://intelicare.com.au/"> Intellicare</a>, a five year old company that is hoping to use Artificial Intelligence and in-home IoT devices to create a sort of virtual care facility.The vision is to use devices that track a person around the house (via a pendant worn by that person) to build up a data set of “normal activity”, that they can then use to catch changes of behaviour down the track. Things like changes in bathroom activity could indicate the onset of a Urinary Tract Infection, or lack of movement in areas where there really shouldn’t be might indicate that the person has had a fall. This will allow the persons family or Care Agency to be more proactive in providing the care that an elderly person or person with disability might require in home, without the need for frequent visits from human staff.Combine this with a suite of tools for Agencies to be able to manage their clients and plans for ever more complex monitoring devices and you’ve got a recipe for the Virtual Care Facility of the future!On the face of it, it sounds pretty good. Let’s face it we want to keep our ageing and disabled populations in their own homes as much as possible. Developing a system that is unobtrusive and provides health data that can prevent escalation of issues that if left unchecked can lead to institutionalisation, can only be a good thing.On the other hand there are some issues that need to be addressed.Firstly there’s the subject of autonomy. If a person agrees to the installation of this service and is comfortable with their movements and activities being tracked, that’s one thing, but what if the system becomes mandatory? Intellicare is already talking about their system as being similar to a house alarm for Insurance Agencies. Will this or similar systems become requirements for health insurance in the future? Will In Home Care Agencies require this or systems like this?What ability does the person being monitored have to turn off the system if they do desire? The elderly and PWD might not want the system to know when they’re engaging in intimate activities.Secondly there’s the subject of what data is being captured and how it’s being used. Intellicare describes itself as “an AI company, coupled with healthcare”. Their services depend on a constant flow of data building up an intimate picture of the activities of the people being monitored. At first this will be via sensors that monitor when a person enters a room, (basically each room has a beacon that senses when the pendant gets to within a certain range). However Intellicare is already talking about expanding out their IoT range to include devices that they describe as “radar like” that can monitor heart rates remotely. This would remove the need for the pendant, as the “people radars” would be able track from second to second the exact location of everyone in range.The data generated is currently used to inform their clients (the families, Care Agencies or possibly Insurance Agencies) of the health and status of each person under their care. However what else could that data be used for? Does Intellicare intend to monetise the data further by generating insights that it can sell to third parties? What happens when a person leaves the scheme? Does their data remain or does Intellicare delete it? Is there provision for the use of this data in academic research?These are all questions that need answers if we’re going to be going to be placing ourselves into the hands of Machine learning. No matter how fancy the tech, Informed Consent should always be required for stuff like this.

Striking a balance between Autonomy and Safety

After I wrote about <a href="https://www.angrybeanie.com/news/striking-a-balance-between-autonomy-and-safety">Intelicares monitoring service</a> I thought it might be an idea to reach out to Intelicare and actually ask some of the questions I had posed in the post. So yesterday I sent them a list of questions. I wasn’t sure how long it would take them to answer, however I was pleasantly surprised to find an email from Jason Waller, the CEO of Intelicare, in my inbox this morning. With his permission I have included his answers (in bold) with the list of questions (in italics) I sent below.<ul><li>When a subject leaves the service what happens to the data collected on them?<ul><li>We keep our data segregated by type in discrete databases so that we can easily separate personal details from the behavioural data. Consequently, when a service is cancelled, the behavioural data is anonymised and stored. However, the data is owned by the individual so if they requested deletion, that is what we would do.</li></ul></li><li>Do you intend to use the data gathered to supply “insights” to third parties (ie not just to clients using your service)?<ul><li>We believe there may be opportunities in the future to make anonymised behavioural data available for clinical research, with prior permission of the client.</li></ul></li><li>Given you are actively looking at devices that track heart rates from a distance (Investor Presentation) what steps are you taking to ensure the data you gather is safe?<ul><li>We have extensive security architecture in place to protect health and other personal data. We recently engaged an independent security consultant to review our data protection. Security across InteliCare was found to be well managed and aligned with industry best practice and has been assessed to pose a Low risk from a management/procedural security perspective. It was also determined that the company has demonstrated full compliance with the thirteen (13) Australian Privacy Principals (APPs) which are regulated by the Office of the Australian Information Commissioner (OAIC). Additionally, we conduct ongoing automatic penetration testing to identify vulnerabilities.</li></ul></li><li>Do you have a Privacy policy?<ul><li>Yes, <a href="https://intelicare.com.au/privacy-policy">here</a>. We also have extensive internal data protection policies and frameworks.</li></ul></li><li>When a new service is activated do you require active consent from the person being monitored?<ul><li>Yes, and this must be obtained by the carer or family who are the users of the app.</li></ul></li></ul>Thanks to Jason Waller for the quick response.