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kestrellI'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).
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).
