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    Charlie Carr

    How EVV Is Violating Privacy Rights and Costing Taxpayers Billions

    Electronic Visit Verification (EVV) is a system of tracking personal care services such as in-home care that are funded by Medicaid. EVV smartphone apps are designed to verify a care worker’s identity and the date, time, and location where personal care services were provided. EVV apps utilize GPS, biometrics, and/or other invasive technologies, and have been widely criticized by the disability community for their violations of privacy and how they impede the independence and freedom of movement of people who receive personal care supports. One of the primary motivations behind including Electronic Visit Verification in the 21st-Century Cures Act was based on the myth that there’s rampant fraud in the personal care services program nationally. The Congressional Budget Office (CBO) in 2016 projected that $290 million would be saved over 10 years if EVV was included in the bill and this projected savings was a “pay for.” It has been widely reported that the EVV industry was lobbying for its inclusion with the position that EVV was the best way to stop fraud, waste, and abuse in personal care services (PCS). It’s more than a coincidence that it would also launch a requirement to purchase and maintain their software in practically every state. Despite national disability and privacy organizations vigorously protesting EVV, the bill passed and included it. However, the law simply requires that location is one of the data elements that need to be gathered and reported by states. It doesn’t specify or mention the use of Global Positioning Systems (GPS) or biometrics like facial or voice recognition. It was CMS that required GPS through guidance. The EVV industry was already selling their monitoring systems of personal care services workers to state Medicaid agencies with the promise that they would meet CMS guidance and, if used, would be complying and not trigger Federal Medicaid Assistance Percentage (FMAP) penalties imposed by the legislation for non-compliant states. Disability rights advocates, unions, state Medicaid agencies, disability trade organizations, personal care services workers, and many more affected people were stunned. In the case of California’s IHSS program, the largest self-directed (the disabled person is the employer, not an agency) program in the country with 400,000 disabled personal care services consumer employers who were successfully using a web-based portal reporting system prior to Cures, it meant that the state had to discontinue this very effective tool to comply and to not be penalized with cuts in FMAP. Once issued, this CMS guidance forced people with disabilities and their personal care services workers to give up their right to privacy. The EVV industry sells states canned programs that use GPS and biometrics that track the physical location of the workers and by default the people with disabilities who employ them. EVV is one of only two federal programs that track recipients of service; the other is the Bureau of Prisons home confinement program. An unintended consequence has been a severe exacerbation of the personal care services workforce shortage. EVV systems are subject to state modifications and developed to easily incorporate them which has resulted in onerous and unnecessary practices in several states that make it extremely difficult to navigate and use location requirements daily. Some states use “geofencing” that sets boundaries that disabled consumer employers are restricted to outside of the home. If their personal care services worker’s GPS marker is detected beyond the preset boundaries, it triggers an “exception” that then leads to a review process by the state/vendor that often holds up payment to the worker. It’s easy to understand why workers are reluctant to join this workforce, be subject to surveillance, and generally be paid less than fast food chains with no benefits. As EVV continues to go live in the states, an alarming number of problems reported by self-directed PCS consumer employers are arising that undermine their control of their employees and make it practically impossible to recruit qualified workers to meet their needs. Thousands of people with disabilities across the country are being forced to manage their personal care with significantly less assistance than they actually need due to the imposed restrictions and worker shortages caused by EVV. Many are being forced back into nursing homes, which is a civil rights violation under the ADA Olmstead decision. This poor public policy is because of the alleged fraud, waste, and abuse projected in the original EVV section of the 21st-Century Cures Act. In 2022, Applied Self Direction, a non-partisan technical assistance organization, analyzed General Accounting Office (GAO) data reported by the National Medicaid Fraud Control Units (MFCU) and found that the actual numbers in the self-directed PCS programs are at an annual rate of .0002% of fraud convictions that totals $6,065,610.The federal annual Medicaid expenditures for self-directed programs are approximately $100 billion. The incidence of fraud, waste, and abuse in self-directed PCS is negligible and is far exceeded by the amount of Medicaid HCBS money spent on EVV systems purchases and maintenance. For example, in Texas, from FY 2017 to FY 2021, the state spent just over $1.3 billion to implement EVV. This information was obtained through a FOIA request, and the shocking amount of money spent to date is a bellwether of what has been spent in the 35 other states that have implemented EVV. Suffice it to say, the EVV industry that provides the software, training, and maintenance paid for by Medicaid is thriving and policymakers must address the very clear data that shows the expense of EVV far outweighs any benefits derived. PCS employers and workers and their allies realized that the only way they could beat back the dangerous effects of the 21st Century Cures Act was to push for legislative change in Cures 2.0, filed by Representatives DeGette and Upton in 2021. As a result, section 409 prohibits the use of GPS and biometrics in personal care services. It’s important to understand that PCS includes home care agencies as well as self-directed programs. Home care agencies have been using GPS and biometrics as part of their business model for many years prior to the original 2016 legislation. Agencies that employ PCS workers want to continue monitoring their employees, but the vast majority of self-directed PCS consumer employers do not. The power and influence of the home care industry could kill the EVV protections that self-directed consumer employers have fought hard for over the past five years. Anticipating this, four national organizations led by the National EVV Consumer Employer Coalition and ADvancing States met several times to reach a consensus on compromise legislative language in Cures 2.0 that separated self-directed PCS from home care agencies. The language gives states the flexibility they need to properly implement EVV but prohibits the use of GPS and biometrics in self-directed PCS programs. Thus, agency-based home care would not be subject to this provision and can continue using employee surveillance. The hope is that both groups can work together to forge a good faith relationship that will embrace the compromise legislation and encourage the congressional Energy & Commerce Committee to adopt it. It’s a sensible solution that allows for the protection of privacy and consumer employer choice and hopefully blunts the effects of worker shortages for self-directed programs. The most important outcome that outweighs any differences is that both groups can continue to work together to keep people with disabilities and elders out of nursing homes and living with dignity in the community. The success of not only this bill but future legislation and policies and programs hinges on how well the disability and elder communities and the programs that serve them can find common ground to keep and maintain independent living and aging in place values at the forefront.

    Community Voices

    Recurring Dream

    I just woke up from another dream with a very similar theme to what I've been experiencing the six months or so. The common theme is my parents (and occasionally my sister) invading my privacy. Typically, the situations have involved taking a shower, using the toilet, or getting situations where I might be naked or revealing private areas of my body. Sometimes in the dream, I find myself shouting or even screaming at them to get out, to go away, to let me do the activity in peace. But they don't even react and just double down on being there sometimes referring to their "right" to be there.
    I'm a little afraid to explore what my dreams might be telling me, and I don't know where to start. For context, I haven't really been in contact with my parents for 1.5 years. I briefly saw them about 8 months ago. Would it benefit me in any way to dig into these dreams, or should I just let them be?

    #dreams #dreaminterpretation #dreamanalysis #Childhood #Family #Parents #Privacy #Abuse #Depression #Anxiety #Trauma

    4 people are talking about this
    Community Voices

    Very frustrated

    I’ve graduated (yay!?) but it took years to get here as I worked full time so as not to take on student debt and had to transfer during two moves where I lost credits. Most of my mother’s family and friends know this already but she chose to publicly post it to her SM account and I can’t help but feel annoyed. Privacy has always been a huge issue for me, even as a kid i realized my family was nosey but also ran their mouths so i stopped sharing. I don’t even have my own social account -partly because they’re a time suck- but also, because I’ve had 2 volatile relationships where I’ve had to take out restraining orders against my exes. Ma knows of one of these and I previously had the convo about my intolerance for publicly posting stuff and still fails to talk to me about doing this type of thing ahead of time. It’s really frustrating to feel like she doesn’t understand or respect that. I don’t want her to feel pressured to take it down but it’s also really annoying that this type of thing has been going on for a few years. I’ve had threatening private (untraceable) emails from a presumed ex abuser (I only think I know which but without proof can’t do anything) and just want to keep a low profile online in case they tried to target my professional or private life. It’s upsetting but I don’t think I should have to share all those aspects of my life that make me fearful/ paranoid simply to be taken serious or have my wishes respected.

    It’s my own issue, but wanted to say publicly if you know of someone being private and asks you to keep their info that way please respect it. They may have good reason they don’t want to share or expose different aspects with you and i think we should each have that right. Don’t force individuals in your life into a position where they trust you so little they refuse to share with you at all. This may sound dramatic as a reaction to something positive but it’s got me on edge enough I don’t want anything additionally hovering over me. #Anxiety #Paranoia #Trust #Privacy #AbusiveRelationship

    3 people are talking about this
    Community Voices

    Can the general public see posts/comments or do you have to be a member to see them? #Privacy

    1 person is talking about this
    Community Voices

    Any suggestions for finding privacy for an online counselling session?

    I want to try out online counselling since it seems more affordable for me right now. The problem is that I don't really have privacy where I'm living and I don't know how to manage it. I need a place where no one can hear what I say and where I can express my emotions as they come. I'm also pretty new in town, so I don't really have a friend I can call up and ask to use their home. It seems like this should not be an impossible hurdle, but I'm stuck. Any ideas?

    #Privacy #OnlineTherapy #MentalHealth

    5 people are talking about this
    Community Voices

    Does anyone else feel uncomfortable with the fact that schedulerstcall centers have our personal info?

    I can't stand the fact that a call center has my personal information. why can't you just put me through to the office I want to call to? But no, they get to take down our name, date of birth, and our reason for calling! I don't think they deserve to know! #Privacy

    Privacy vs. Transparency When Talking About Kids With Autism

    I’m sitting with my son in a restaurant that is moderately noisy. A woman walks past our table and he reaches out and touches her as she passes him. She gives him, and then me, a look of discomfort; to me more a look of “teach your child some manners.” He frequently yells out “Hi!” to strangers in the grocery store. Sometimes they say hi back, and sometimes they don’t. More often than not they startle at the loudness and suddenness of his greeting. He asks every checkout person we meet what color their car is and if he can have a sticker. I find his quirky conversation skills to be pretty endearing, honestly. I take it personally (much as I try not to) when people don’t receive him well. I worry about his feelings as he grows and becomes more aware of how he doesn’t always fit in. Maybe he won’t care, but if he does I want to shield him from the judgment of others. Every time I get a look, or a snide comment, or an audible sigh or other gesture of disapproval, my heart sinks and I want to shout out, “My son is not a bad kid, he’s autistic!” I never do. I usually tell myself it’s their problem and none of their business why my son doesn’t meet their limited expectations of what constitutes a social interaction. No, I tell myself, I don’t have to justify his behavior. They should be more educated. In my personal life, I’m a pretty open book. Friends, family, coworkers ask me about our life and I will tell you the real deal — the good, the bad and the ugly. I have made really open and honest Facebook posts (on a private account) in regard to his autism, and by extension my reactions to autism and coping strategies. When I do, it’s usually met with positivity. By sharing our stories, hopefully I’m widening someone’s perspective who might not know anything about autism and softening their heart to his challenges and what they might think are strange behaviors. If my words make it easier for someone to understand him, or any other autistic person, I feel like it’s worth it. On the flip side, I often agonize over sharing details of his life without really asking him. He’s only 5 and can’t give reasonably informed consent, but I care what he thinks. I care about his privacy. His disability is not my war cry to declare to the world what a great Mama Bear I am. I want to make his story about him, but I can really only tell it from my perspective. I never want him to feel as though I didn’t honestly consider his feelings. At the end of the day, I try to find a balance between privacy and transparency. My gut feeling is that if we never discuss it, then he will always be misunderstood by people who don’t know autism. There’s power in being unashamed of who you are, and it is my life’s hope that he has that. I’m careful in what details I share though, so it doesn’t cross the line into being too personal, and I try to always portray him in a positive and loving light. His behaviors might challenge me, but it’s never anything he’s deliberately doing, and I always love him. My hope is that by being transparent, it will help people with no exposure to autism understand it a little better. And it’s harder to judge someone if you know more about their story.

    Community Voices

    Therapy Day x Oct 2019: peripheral questions

    Therapy Day turned out to ... have some unforeseen circumstances (not really the Dude's fault, but life happened .. though he also *could* have been MUCH clearer) - for Wednesdays, he does clinic in a different speciality - Obesity & Diabetes Integrated Care lol. I'm there because, psych appt wanted a Wednesday .. that's ALL.

    Figuring that out myself was surprising - he just said, "for Weds' clinics, I see people at Level 5." So I just said ok noted! ... only when the hospital sent a text reminder that I realised it was the Obesity & Diabetes Integrated Care clinic (oh 😅 But to be fair they *did* state that weight management is one of his specializations ..)

    That was like whew but (still) okkkk ... until I walked in to have a cell group friend call out to me when I was registering 😩

    ok side note, to be fair: I know at least 3 people from church work in this hosp, I anticipated maybe meeting them, yikesgodforbid. But this person was the one I'd least have liked to meet of the 3. She's in my cell but I have never, and don't plan to, tell her abt my MH stuff.

    But also (having known that she's from my cell but now seeing her at the workplace) ... gives me Questions.

    She's shared anecdotes (no naming, but anecdotal incidents) before about less-than-pleasant patients she kind of dreads more than others - not that I saw anyone in the waiting room besides me (in part cos I was too pre-occupied in my own head screaming DUDECANYOUCOMEOUTNOWPLEASE), but I just couldn't help wondering .. if that was someone who might have had an appt just before or just after me.

    And by extension, ... is this what life is like after work? On the flip side as pertains to me - would the Dude just offhand describe me in general to his cell group too? What would he potentially say ..?

    I don't know. I mean, my cell group friend isn't a psychologist but isn't confidentiality a general thing to abide by? To make a related parallel, as an educator (it doesn't matter whether I'm mainstream, SPED, or private enrichment) -- I'm not allowed to reveal my kids' faces to social media on public settings; for this reason I only ever upload stuff we doodle together or stuff we make using blocks in break time or .. that kind. Or friends sticker their faces out. I digress. The point is, if it is a principle (of confidentiality) in general that should apply in all variations of jobs in a certain given sector ... where then is crossing the line?

    Was it ok for my friend (physiotherapist) to have described to us anecdotally her frustrations with her patients, even without naming (given that it is after all still descriptive)?

    Thoughts anyone? 🤔

    #CheckInWithMe #MentalHealth #Privacy

    2 people are talking about this
    Community Voices

    Should I leave this site now that privacy is gone? #Anxiety #Depression #Privacy

    I just saw the Share feature added to each post and entry and I am pissed. Why is this necessary?

    1 person is talking about this
    Community Voices

    I downloaded the app and signed in with my Facebook does that mean if I post something it’s visible to Facebook? I’m hoping not!

    4 people are talking about this