Disability and technology: What do you consider to be "medical equipment"?

[kestrell]

I'm on a committee of people with disabilities who are working with Mass Health to improve services and, ultimately, health policy regarding PWD. A few days ago, the insurance company which is developing this pilot program did a couple of presentations on their role and what they do.

Let me state right here: everyone in the room is working really hard and worthy of respect for the energy they put into this program and the willingness they show to listen to each other.

But sometimes, when the insurance policy people are talking about what they do and the services they provide, I seriously worry about what my facial expressions are giving away.

Example: the policy person stated that the company provides transportation to medical appointments and social events, without taking away resource such as the Ride (our local para-transit provider).

At this statement, I think my eyebrows attained lift-off.

When it came time for my comments, I had to say that these statements made it sound as if these resources were functioning systems, which they are not. I then told the story about how I missed the previous meeting because the driver from the transportation service used by the insurance company never showed up, never texted me, or called. As for the Ride, it's literally a joke local PWD mention in the black gallows way soldiers mention a military snafu (situation normal, all fucked up). As for the recent policy of using Uber and Lift drivers to transport PWD to medical appointments, it's pretty obvious that these drivers are just not qualified to be doing this.

But the big storm came in response to the insurance reps mention of how they purchase medical equipment and assistive technology for PWD. There were stories about the company purchasing the wrong cane/walker/mobility device, which was useless to the individual; assistive tech, ditto; hours spent on the Web site (which, btw, is still inaccessible to screen readers after the year I've been doing this), and a complete lack of technical knowledge on the part of reps to whom PWD had attempted to explain their needs.

But the worst cases were regarding the denial of a generator --the individual lived in an area where power went out frequently-- because the generator was outside of the house, and therefore not medical equipment; another case was the denial of a small fridge for medicines, because it could be used for other things. (Btw, Alexx bought me my own fridge because the shared fridge is so full of tupperware tetris that it's really difficult for me to find anything in it, let alone do so quickly when I have a migraine or low blood sugar.)

This is where the disability and technology advocate part of my brain kicked in. I had been assuming he issue was that we, the PWD, were just failing to connect tot he correct, informed person who could make a knowldgeable decision about what we needed.

The truth is: there is no such person.

It reminded me of my experiences as an undergrad at UMass Boston: I was trying to explain about why I needed a technology and how I used it to people who had absolutely no knowledge concerning what I was talking about.

So this was the point I tried to make: that insurance companies and health agencies that worked with PWD need to begin informing themselves about the technologies we use, and to accept the idea that at some point there had been a cultural shift that radically changed the concept of what kind of technologies PWD are using. PWD are early adopters and adapters, and as long as policy is going to try to restrict the definition of those technologies to "medical equipment," we were going to continue to have two very different conversations. And there needed to be at least one person somewhere in their company or program to whom a PWD could talk and have a useful conversation regarding their tech needs, someone who knew the difference between one kind of walker and another, the complexities of storing different medicines safely, and why someone would choose one type of cane over another, and why that personal choice is a legitimate reasonable decision.

One last point: the assumption is usually made that the person with a disability is making a coice that costs mroe money and resources. This is untrue. The cost of one trip in an ambulance is exponentially more expensive than a generator. The cost of buying the correct piece of technology the first time is less expensive than buying two pieces of the same item. And frequently, the tech a person prefers is cheaper than whatever some morally-questionable medical equipment company is pushing the insurance company or government program to purchase (yes, Maxi Aids, I am talking about you--I've met used car salesmen with more morals).

Comments

[cvirtue]

"I had to say that these statements made it sound as if these resources were functioning systems, which they are not."

DId the insurance people acknowledge that the systems were not functioning? Did MassHealth?

I'm curious on behalf of my family member, of course, who may eventually need transportation of this kind, and on the general sanity level of MassHealth (which I have found so far to be fairly sane, as long as one isn't talking to the phone staff, who are clueless beyond belief and all the real workers know this; I am sure you know this as well, I'm just ranting.)

[kestrell]

Everyone in the meeting was very respectful, but this presentation and discussion had, unfortunately, been left as the last item on the agenda, and the meeting started late due to rainy weather and resultant transportation delays. There was only time for some acknowledgement that these points needed to be addressed before the meeting ended, but the transportation issues were a priority that all agreed upon.

As the transportation situation exists now, its problematical. Somedays you get a driver who pulls up tot he address you gave on time, texts you if s/he is late, and understands enough English that s/he can understand any directions or requests you give for where you are going and which entrance you want. Maybe half the time these things do not work out. A large part of my anger at the fuck-up last month when I missed my meeting was that someone with a mobility impairment or serious health issue would have been left standing outside in the cold and rain, which was hard enough on me, since I couldn't put on my gloves since I had to keep calling my care manager so she could call the transportation company to ask when my ride would arrive. I have rheumatoid arthritis in my hands, so after a half hour of this, my hands weren't working too well.

Here are my followup thoughts. I have a biopsy in two weeks and I will be paying for transportation out of my pocket because I can't handle the addition stress of wondering when/if the ride from the company my insurance company would arrange would show up.

If I had an intellectual or emotional issue, where I might get confused, frustrated, and/or angry, this situation could become an issue if I had difficulty with self-control. Stress and anxiety disorders, ditto. Other people might just give up on using these unreliable resources. I also commented on one rep who was using a case study in which a man with depression who "failed to reach out" and use services was described by the rep as apathetic, and a few other adjectives which were pejoratives, when the way I intrepreted his attitude was that he had had negative experiences with such services and had given up on finding them useful.

We should take this conversation offline, tho, maybe talk in real-time--I've been lacking spoons lately, and writing online is a little challenging, as my typos probably spoke for that fact.

[cvirtue]

Offline/in person would be fine - no need to respond to this here response of mine.

Along with anxiety issues, someone with a Dx which includes psychosis (several different ones, including ones that don't have as much stigma, such as Parkinson's) stress can bring on a psychotic episode. LOTS of studies back this one up. So you could have someone waiting in the rain for promised transport... who then starts to hear giant bugs crawling in the walls.

Overall it sounds like some of the people you speak of who should know better, are still subscribed to the older "blame the victim" model of mental illness. They might be educable -- but I'd be willing to bet many of the people who are the actual service providers, like the drivers, are less likely to be compassionate about something not under the control of the client, such as apparent apathy.

[penta]

As a person with disabilities myself...God, why is it paratransit is screwed up everywhere?

The only place I've found with working, useful paratransit so far is in Palm Beach County, FL, and there I've only used it for short trips so far. (Of course, there, on a per ride basis you actually pay more than for the fixed-route bus.) NJ Transit's AccessLink is a horror show, and apparently, as you note, MBTA's equivalent ain't good.

Meanwhile, yeah, medical transportation is universally bad, where it's even available.

[siderea]

Bless you, bless you, bless you.

I'd like to point out that health insurance companies aren't allowed to have non-medical people make medical decisions. I mean, they don't have licenced masters level mental health clinicians doing MH claims reviews because they thought it was a nice idea; the state makes them. So why on earth is it that MassHealth's vendors are allowed to have people with no professional expertise or qualifications in make decisions about assistive technologies?

This isn't a "oh gosh you need to try harder to understand us better" situation. This is a "how about we develop some regulations forcing you to hire staff competant to do this" situation.

[kestrell]

As I said, this was a major epiphany for me, and a number of people came up to me after the meeting and thanked me for putting the problem into words. My role on the committee has been developing into the accessibility and technology advocate, which is a role with which I feel comfortable, but I've been surprised at how little other people in Mass Health and the insurance company know about technologies used by PWD. I know it's a big subject, but they often use the phrase "assistive technology" and I'm not sure any one could tell the difference between text-to-speech and speech-to-txt. Am I just expecting too much? And how does this lack of current tech knowledge impact PWD who are now using mainstream tech that has its own suites of accessibility features? Insurance companies are not prepared to accept "my iPad is my assistive technology," or "my iPhone is my medical AI."

[jesse_the_k]

Thank you so much for doing this work and providing this crucial insight.

RESNA has a certification program for Assistive Technology Professionals. What ATPs do is nicely summarized in this Lifewire article. Geez, I would have loved to do this job!

So answering siderea's point, MassHealth should have a good ATP overseeing these issues. Back in the day, people like that often managed the "loan closet" at an independent living center.

[j00j]

*screaming* hell, we still jump through hoops to make sure partner gets the right transplant meds on time periodically, and a hospital stay for rejection is WAY more expensive than letting him get them from a local pharmacy instead of mail order, or even paying for brand instead of generic (there is a known issue with the generic for some people. he is one of them. we learned this the hard way). And that's not the wonderfully controversial category of medical equipment.

Transit: A gentleman I passed on the street once asked me to help him call paratransit, because they were late/had forgotten him OF COURSE, AND because I'm assuming none of these companies saw fit to make sure he had a phone that was more accessible for him to use. It would likely have been a cheap phone, too! Just some big goddamn buttons.

[kestrell]

You have my sympathies: I'm allergic to most of the migraine medicines--nothing too bad, just the head pain and back pain intensify for a while--but it makes me very aware of how often I have to keep repeating, "No, I'm allergic to that," and worry that the pharmacist is going to switch something and not tell me.

And accessible phones: shouldn't every older person or PWD have one of these? I recently became aware of an insurance company giving away simple olf clamshell phones free, and I wondered why there isn't a program to get those to the elderly or PWD who are socially isolated.

There ARE free smartphones for poor, disabled people

[jesse_the_k]

...through a federal program called Lifeline. Plop your zip code into this form to see who provides Lifeline connections in that area.

The "universal service fee" added to all phone bills is collected for this purpose--it also subsidizes text-to-voice, voice-to-voice, and video relay services. Checking the Universal Service Administrative Co's site just now, I learned that their remit has expanded to broadband, which is excellent, since the web is almost unusable any more at 3G.

The actual phones are provided by different companies in different areas. A pal tried it here in town, got a Tracfone that couldn't get signal at their home--not so great for 911, not to mention paratransit.

I'm so glad you're doing this!

[jesse_the_k]

...and the generator denial makes steam come out of my ears.

The notion that assistive technology must be "special" is, as we both know, garbage. You've been making a great case in your recent Alexa series. It does have to work well for the end-user.

I have a hunch* that the mass-marketing of Segway-like devices is going to turn the power wheelchair industry upside down. Transportation planners designing sidewalks and buses are used to mobility aids that look like wheelchairs (or maybe scooters). Don't know what they're going to make of ebikes, etrikes, or hoverboards.


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