US Right To Repair public comment period

[slomobile]

The Federal Trade Commission (FTC) has opened a public comment period on Right to Repair, and has asked for public feedback on whether the agency needs to create new rules to protect repair choice, including requiring more open access to repair documentation, parts, training and software tools.

https://www.regulations.gov/commenton/F ... -0077-0001

https://pirg.org/edfund/resources/stranded/

[martin007]

"Much ado about nothing."

[slomobile]

I typed a bunch only to find the that submissions are limited to 5000 characters.

Anyone care to suggest which bits are least important? I've been staring at it too long and lost objectivity.

I've had 2 failed spine surgeries that leave me in pain and cause further spine degradation when I sit or stand vertically.  I am mostly fine if I can be in a prone position, supported at the chest or shoulders.

There is no portable durable medical equipment/wheelchair/mobility device to keep a person in that position.  I believe there may be benefits to people with spine injuries if we stop forcing them to bear weight through injured sections of their spines and give the structures time to heal.  The nerves may not grow back, but we can at least stop insulting the surrounding structure.

I've asked for wheelchair evaluations.  My doctor has made the appointments with specialists.  But the DME(Durable Medical Equipment supplier) cancels the appointments. I won't be seen because the DME companies know they have nothing to sell me.  At least nothing simple or sure to be paid by insurance.  The hospital will not schedule an evaluation without a DME rep present.  DMEs refuse to show up because I do not have a simple diagnosis.  I have both private medical insurance(Primary) and Medicare SSDI(Secondary).  Neither one even has an opportunity to deny coverage because no claim can be submitted without the evaluation and order of a device.

I have some experience mentoring the building of robots as an Americorp Vista volunteer with FIRST.  I decided to rely on my experience and build something to get moving in the right direction.  I settled on a used Permobil F3 made right here in Lebanon Tennessee.  

Buying a used chair with cash and modifying it myself with no medical advice was my only option despite having plenty of medical insurance, a primary care physician, a neurologist, a neurosurgeon, an orthopaedic surgeon, and a pain specialist on board.  They were all too afraid of potential liability to consult on any solution not already 'approved'.  My neurosurgeon, I later found out is the doctor who famously trained "Dr. Death" Christopher Duntsch. I have no interest in suing, but their fear of being sued still affects my treatment.  There is no treatment. Unless I agree to a spine stimulator. They all want to put that thing in me.

I visited the Permobil factory that made my chair and spoke to their excellent custom shop employees to see what could be done.  They had some great ideas, but would not work on my used chair because I did not have a specific order from a DME following a wheelchair evaluation.  I have a prescription for a motorized wheelchair, but apparently that means nothing.  They were also afraid of liability if they veer away from 'FDA approved' solutions.  They said they could build me something custom like I need, and would enjoy the challenge, but only if it is a brand new chair specifically ordered with the needed options (which do not exist) by an  "Assistive Technology specialist" certified by RESNA.  That is the person at every local DME that refused to even meet with me because I did not have a diagnosis on their short list of easily approved diseases.  I'm on my own.

I built this https://youtu.be/NKFM4EHsf84
I've made improvements since.

I took that chair to https://www.tn.gov/didd/for-consumers/seating-and-positioning.html because I had seen this video https://youtu.be/QwIvuNCn2WcQuadruped on forearms is just what I need.  I filled out all the intake paperwork along with the referral from multiple doctors only to have it ignored.  Because I was not disabled "enough".  They would not give me any formal rejection which I could appeal, or anything to submit to insurance.  Just ignored because it is too complicated for them.  All I really need is someone trained in seating systems and anatomy to consult with.  An ATS right?  Certified by RESNA.

For anyone intending to produce a wheelchair, whether they intend to sell it or not, if they would like to know if it might meet FDA standards, they must first purchase a copy of the standard incorporated by reference in the law.https://resna.formstack.com/forms/standardorderform
$12,615  total just to see what the law is. Payable to an industry association that represents a well entrenched monopoly.  Requirements on class 1 2 and 3 medical devices being "substantially equivalent" to already approved devices ensure that innovation will be sacrificed for steady profits on outdated equipment.
Then there are testing requirements.  Probably destructive testing, at a lab certified by the association, and filing fees, attorneys... and on and on.  But I just want to make one chair.  For my own personal use.  And show others how to do the same.  Did I violate federal law and incriminate myself by publicly posting this comment?  Probably.  But I wouldn't know it because I cannot afford to buy a copy of the law.
That standard is useless to me.

Individual wheelchair users are also hampered by the lack of access to programming tools such as Permobil's Wheelchair Builder software and programmer at any price which is necessary to modify the firmware on my chair.  Modification of firmware is necessary for all the parts to cooperate in their new configuration.  The chair's actuators are controlled by ICS, a Permobil proprietary extension of the also proprietary R net control system produced by Curtiss-Wright.  R net also requires a programming dongle that is generally unavailable in the US to consumers.  I paid over $500 for my dealer level dongle which only lets me program a restricted set of parameters.  The OEM level dongle is required to adjust a parameter called motor compensation which is crucial to be accurate if the motors are changed out.  That tool is even unavailable to dealers.  None of those allow me to change ICS programming.
When I was building robots, control of actuators was easy.  You had a sensor indicating position, and you drove a motor to the new desired position.  The wheelchair has these same parts, sensor and motor, but communication to them is intentionally obscured.

With my prone wheelchair, if I move the 'back' actuator (which is now the chest actuator) past a point which some 'ATS' once decided was a safe limit for the back of the original chair owner, the chair driving is inhibited.  It slows down to a crawl.  If I keep moving the actuator, the chair stops driving completely.  I am not able to change the setting of those inhibits.  No one is; on any Permobil chair as far as I know.  Permobil could do it conceivably at their factory, but they won't because it is no longer a current generation chair.  They only set the drive inhibits with a DME order for a new chair.  AAAARGH!

Lack of access to change a simple setting is stopping further progress on this chair design.  If I lived in Colorado where wheelchair right to repair has been passed, I would have access to the firmware, and the software to modify it properly and safely.  Instead, because I live in the state where the chair was built, I have no options.  This is an absurd situation.

Please make access to drawings, parts list, build configurations, firmware, software, programming and special tools part of a national right to repair for durable medical equipment.

I need it.  Others do to.  
Further, when people like myself create or modify something that works for them, there needs to be some path for those innovations to find their way back into 'approved' channels where they can be ordered by physicians.  Doctors, not AT Specialists.  There is a gatekeeping procedure used by the FDA whereby new wheelchair designs are much easier to be approved if they are "substantially similar" to already approved designs.  This stagnates development and leaves people with no choice but to use equipment far behind the state of the art.  

'Modern' wheelchairs sold in the US still use solely lead acid batteries, not lithium chemistries.  Do not use brushless motors.  Do not have wheel encoders.  Such items, long standard in industry and robotics, are like hen's teeth in the medical mobility equipment world.  They can all be made safe if they are allowed to be developed openly.  Improvements like https://luci.com/ could be much better with open source motor controllers and encoders.

The standard for basic wheelchair programming, as most people receive their power chairs in the US is awful.  By default, chairs are programmed to be very unresponsive, to accommodate users with tremors or poor hand control.  You move the joystick, it takes a second or 2 before the chair starts moving.  You let go of the joystick, the chair keeps moving a second or 2 before it stops.  This is unnecessary for most users and results in injury to operators pinned against doorways or refrigerators because the chair didn't stop in time.  This happens because the chairs are not equipped with wheel encoders to know the actual chair speed at any time.  So they estimate speed poorly without encoders and take a very conservative long time to slow down just in case the chair may have been traveling fast.  A user may only need the chair to move 6 inches in 1 second.  From a dead stop they hold the stick forward for 2 seconds and let go the instant it begins to move.  The chair moves for 3 seconds and goes about a foot and a half.  This is unreasonable response and purely a cost saving measure.  If equipped with wheel encoders, the chair could begin moving immediately and slow down in the minimum safe distance.  The most popular wheelchair control system, R net despite implementing the above mentioned speed estimation, still does not even stop safely from high speed because the parking brakes are applied according to a timer that is not programmable.  If a user is moving downhill at speed and lets go of the stick, the chair should be slowed more gently to avoid tipping forward and throwing the occupant from the chair.  R net begins that way, but when the internal timer runs out, it slams on the parking brake suddenly throwing the occupant forward in an unnecessary crash.  This has happened to me several times causing injury.  With wheel encoders and an inexpensive tilt sensor and some simple hobby level programming, that situation could be completely avoided.  As far as I know, this solution is not implemented on any FDA approved powerchair except the iBot.

China has a much more open, collaborative, and progressive wheelchair development environment than the US.  The US is perhaps the least permissive in the world in this regard.  Rear wheel drive power chairs, common across Europe from many manufacturers, and widely regarded as the best layout, are not even available in the US.

We need the Colorado wheelchair right to repair statute or something substantially similar to become Federal law.  FDA needs to adopt affordable simple procedures for evaluation of experimental user created designs.  No one knows the needs of a cripple better than the cripple themselves.  We should be allowed to build what we need and offer it to others in need.  And fix things when they break, or change them into other things.
The invoice on my chair is nearly $30,000, but the manufacturer basically still owns it because they wont allow me to make it fully mine.  

Several wheelchair innovators collaborate on 
https://wheelchairdriver.com
https://github.com/redragonx/can2RNET
https://brokenwheelchairs.com/

I can be found there with the user name slomobile. 
I'm always happy to answer questions and help in any way I am able.

I've recently retained the help of a local metal working artist https://yvonnebobostudio.com/ to help refine the design in line with https://en.wikipedia.org/wiki/Frame_running since I can't seem to interest any trained medical professionals. 
Wish us luck.

[martin007]

Money moves the world...

[LROBBINS]

Hi Slomobile,

I too think that a right-to-repair law is needed, but that is not the same as having a right-to-modify and your long write up confounds the two. But I want to particularly comment about the solenoid brake problem you bring up.

Those are PARKING brakes and and engage when the stick is at dead neutral for a short time (pretty typically 200 msec - in Dynamic DX that is programmable, I'm surprised by your saying that it's not in RNet). However, unless your hand is non-humanly rock steady, if you keep it on the stick even when trying to hold it centered, that timer will reset with every tiny, tiny jiggle of the stick. So, if you keep your hand on the stick when going downhill the parking brakes should never engage and try to throw you out or over. You probably should keep your hand on the stick in any case, however, just so you can steer when a wheel hits a pebble along the way.

If your hand is astoundingly rock steady, you can even hold a tiny bit of back stick while coasting downhill and the parking brakes will not engage. Should you want to actually defeat those solenoids, however, all you need to do is arrange for 24V or 12V directly to the solenoid (as appropriate, depends on chair some are 12V some 24). You could even have a timer for that - push a button to defeat the parking brake for x seconds whenever you want. You can also permanently disable them by putting the chair in free-wheel and shorting the microswitches usually used to tell the controller to not drive when in freewheel. Here in hilly Siena I wouldn't do that - they are very much needed or one will drift nearly every time you want to stay still.

Ciao,
Lenny

[martin007]

Hi Slomobile,I too think that a right-to-repair law is needed, but that is not the same as having a right-to-modify and your long write up confounds the two.

That is the intention of the big manufacturers.
Let the politicians write a "vase law ".

[biscuit]

This consultation is on the right to repair things in general, not only wheelchairs. So the less you mention about wheelchair technicality and your own needs, the more you say within the FTC's terms of reference. You could delete most of your explanations between

I've had 2 failed

and

Certified by RESNA.

as they aren't really adding to your argument.

[slomobile]

right-to-repair ... is not the same as having a right-to-modify

I strongly disagree. Right to modify is an essential element of right to repair 'in the US' for historical and legal reasons. But also for human reasons. If my necessary medical device doesn't fit me, shouldn't I have the right to make it fit? How does any other entity have authority to tell me I cannot?[/quote]

Manufacturers have historically attempted to deny warranty coverage if ANY repair has been done outside OEM facilities and using OEM replacement parts, calling it "modification". Perfectly done repairs voided automobile warranties, and affected resale values. There is US law (Magnuson Moss warranty act) and case law that has made that practice illegal. Yet it is still routinely practiced. When I repaired consumer electronics for Best Buy I illegally voided warranties every day. It was an actual part of my job description. If right to modify were given up, we would have no right to repair either.

Those are PARKING brakes and engage when the stick is at dead neutral for a short time (pretty typically 200 msec - in Dynamic DX that is programmable, I'm surprised by your saying that it's not in RNet). However, unless your hand is non-humanly rock steady, if you keep it on the stick even when trying to hold it centered, that timer will reset with every tiny, tiny jiggle of the stick. So, if you keep your hand on the stick when going downhill the parking brakes should never engage and try to throw you out or over. You probably should keep your hand on the stick in any case, however, just so you can steer when a wheel hits a pebble along the way.

If your hand is astoundingly rock steady, you can even hold a tiny bit of back stick while coasting downhill and the parking brakes will not engage. Should you want to actually defeat those solenoids, however, all you need to do is arrange for 24V or 12V directly to the solenoid (as appropriate, depends on chair some are 12V some 24). You could even have a timer for that - push a button to defeat the parking brake for x seconds whenever you want. You can also permanently disable them by putting the chair in free-wheel and shorting the microswitches usually used to tell the controller to not drive when in freewheel. Here in hilly Siena I wouldn't do that - they are very much needed or one will drift nearly every time you want to stay still.

Ciao,
Lenny

I do NOT want to defeat my brakes. I only want the delay to be programmable (longer) like Dynamic DX. Achieving that would require a modification.
I can, and must hold my stick rock steady. I cannot tell if I am holding it steady within the neutral deadband or slightly forward or slightly back stick. Just steady. There is no feedback when moving fast. And the consequences are vastly different one millimeter on the wrong side.
Remember I'm driving the prone chair. It is very prone to tipping forward so I must have my hand on the stick at all times. Moving in close quarters, it is always going click, click, click each time I look over my shoulder to see where my rear casters are. But if I am going downhill, I must decelerate VERY slowly. Much slower than what happens if I let go of stick. Letting go of stick on a downhill would flip me guaranteed. I lock my pinky and ring finger under the stick, middle against side, stick pinched between index and thumb. I slowly move from a forward position, to some position rearward. So slowly that I can easily exceed 200msec in the neutral deadband while I think I am slightly stick forward. Stick back braking, in the prone chair could be neck breaking if I lost my composure and allowed a turn to begin that would defeat the anti tipper wheels.

Yes, it is absolutely unsafe for the average wheelchair driver. However it happens to be the best thing so far for my condition. I'm working on something better, but that could not happen without right to modify.

I know I did a poor job explaining. In hindsight, I was in a bad place mentally when I wrote that. Periods of BP over 200 systolic and 40 HR. Creates a feeling of doom and whatever is on my mind seems in that moment to be the most important thing in the world. Its hard to be objective in that state. Going from sitting vertical to sitting in the prone chair dropped my BP by 80 points.

[LROBBINS]

Then you'll like the Roboteq script's parking brake switching - time delay can be set anywhere you want, I have it at 500 msec. On the other hand, you might still consider overriding the interlock when going down hill.

[slomobile]

I like the idea of overriding the parking brakes when going downhill. I just can't be bothered to manually defeat my parking brakes and remember to reapply them. Its just too much cognitive load at an already high stress period.

I suppose I could add an accelerometer and inhibit parking brake any time the area between gravitational vector and non-gravitational acceleration vector exceeds some small value. That should allow parking brake to engage when stopped on a steep hill, because the area is zero. Not engage when accelerating or decelerating. It would allow engagement at steady speed though. So there could still be a case where the acceleration down slope due to gravity exactly matches the deceleration from friction. A terminal velocity. With stick being neutral, brake would still engage.

With encoders to detect wheel speed, it is simple to inhibit brakes when over a very small wheelspeed. How can it be automated without wheel encoders?

Of all the wheels on my prone chair F3, the anti tippers have the most wear. That is only a slight exaggeration.

[Burgerman]

I would suggst that the real issue here is the CG is far too far forwards.

[slomobile]

No. For how I use it in grass usually, taking weight off the rear casters really helps a lot. I'd like to get down to just 1 rear caster and power deploy/retract the front antitippers like the F5 VS setup but in response to an accelerometer. As above for triggering brake inhibbit but deploy antitip instead. With a nice spring and damper.

[LROBBINS]

How about a push button with timer to disable the brake (apply a voltage to the coil) and re-apply them after a while. You'd still have to remember to activate the defeat going downhill, but wouldn't have to remember to turn them back on.

[Burgerman]

Add a rate gyro to disable brake if it detects a pitch forward. Or a microswitch that does the same when rear suspension unloads. Or wear lead diving boots.

[slomobile]

Add a rate gyro to disable brake if it detects a pitch forward. Or a microswitch that does the same when rear suspension unloads. Or wear lead diving boots.

I like detecting the rear suspension unload. That ought to be very reliable. Lead boots no. My riding position has my feet behind me, but whenever I pitch forward the natural tendency is to put feet forward to catch the chair. I've pulled hip muscles bad doing that while just wearing light shoes.