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Independent Living News & Policy from the National Council on Independent Living

NCIL Needs Your Help Documenting the Impact of Electronic Visit Verification!

When the 21st Century CURES Act passed into law late last year, it included a provision requiring states to implement Electronic Visit Verification (EVV) systems. EVV systems vary by state, but they all entail electronic monitoring of personal care attendants (PCAs), home health care workers, and the consumers they work for.

A NCIL Member holds a sign that says "Resist Injustice"Prior to its passage into law, NCIL released a statement of opposition to EVV, and we continue to strongly oppose it. EVV is discriminatory, and it undermines consumer direction – a key tenet of the Independent Living Movement. EVV is a violation of the privacy of people with disabilities who use PCA and home health services. On top of that, it is expensive, burdensome, and less effective than traditional methods.

We have heard from people with disabilities around the country who are already beginning to feel the negative impact of this requirement. NCIL is committed to considering all available options to fight this harmful law, and in order to do so, we need your help!

Please share your experiences with us. Please answer the questions below, and share any other relevant information, by Friday, December 29, 2017. Send your responses to Lindsay Baran at lindsay@ncil.org.

  1. Has your state implemented or begun to implement EVV?
  2. How does EVV work in your state? For instance, are they using telephonic timekeeping? Are they requiring the use of GPS tracking? Does the system involve random checks, or complex activity logs? Share the details with us.
  3. Have you been personally affected by EVV? For instance, have you been more restricted from accessing your community freely? Have problems with the system or technology delayed payments? Have attendants quit due to new burdensome requirements?

We appreciate any information you can provide. Thank you for your help!

Comments

  1. Cherie Wright says:

    I am in Ohio. Training had begun for my providers. EVV will be implemented jan 8. Using a device with gps tracking. I am not allowed to have my providers clock in or out outside of 1000 feet or my homes unless it’s put in the portal with an “exception address”. This is a complete violation of my privacy And have providers comtemplating quitting because of this

  2. Angel Dillon says:

    I think this will be too hard on the clients and the providers when they have to go on outings or vacations or take them to the store stuff like that and for clients that can’t use their arms hands to write speak just too difficult for them it’s too much of a hassle for everyone

  3. The implementation of EVV will cause unnecessary hardships upon the lives of people with disabilities and our Caregivers. It is also a violation of our Civil Rights by treating disability as a criminal act.

  4. Alicia Hopkins says:

    As a crime victim with a disability this device is invasion of my privacy. Also it is life wrecker. I should not have to feel like i am on house Arrest or prisoner in my home. Also it would create problems for me.
    Violation so many laws as well.
    It discriminates aginst people with cognitive disabilities so much.

    • Every Friday I will take my client up to meet her husband for the weekend, will always have to be at the same meeting place as we usually meet where it is convient for him. Or a doctors appointment she will have scheduled. Now he will most likely have to drive down to her house, even in not so good driving conditons. Sure she will not be happy about calling in when I leave with also signing time sheets.

  5. angela sage says:

    Its another way to not pay for nurses doctors or clinicians, Medicaid billing companies nearly killed off health care worker having them carry caseloads of 150 chronically mentally challenged and sud clients.

  6. Rajai Saleh says:

    The first phase of EVV will be implemented in Ohio on January 8th, 2018. Providers have until July to use it correctly or they won’t get paid. My significant other is my independent provider and lives with me. It makes absolutely no sense for cases like mine. I work from home and have a flexible schedule. There is no way I can inform my case manager every time my I get up at a different time, go to bed at a different time, or eat at a different time. I don’t want to be on a fixed schedule. That’s what happens in institutions. I am approved for 61 hours a week, but because he lives with me, he actually does more than that since I need assistance with all of my activities of daily living. I chose for him to be my provider because I need the flexibility and don’t want to depend on unreliable caregivers. I’ve had to deal with that in the past. In addition, although the state said the devices can be used out of the home, they prefer you keep them in the home and add addresses in the system if you are out. That is an invasion of privacy and again limits our freedom. I do believe this will be more harmful than good, and it is a waste of resources that can otherwise be used to expand care to others or raise the pay rate for providers.

  7. Tammi Bradley says:

    14th Amendment:

    No state shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States; nor shall any state deprive any person of life, liberty, or property, without due process of law; nor deny to any person within its jurisdiction the equal protection of the laws.

  8. This is not acceptable !!!!!!! We are not criminals !! We are caretakers and disabled !!! There is no excuse for this except trying to prove the disabled aren’t as capable as non disabled !!! WELL THEY ARE !!!!!!!!! They might do things differently and/or need assistance BUT that doesn’t make them less IMPORTANT than ANY OTHER HUMAN BEING !!!!!!! Since you desperately want to track a group, ‘TRACK THE POLITICIANS IN WASH. D.C’. !!!!!! They will show us ALL where the WASTE is !!!!!!!!!!!!!!!!!!!

  9. Glenda Mensing says:

    Besides being an invasion of privacy this device has to costing Medicaid millions of dollars that could be used on the disabled and people on the Waiver waiting list get off of it sooner! Also as an IP I’m under the understanding that if my time sheet doesn’t match this device times exactly, I won’t get paid! Also if the clients parent isn’t home when I clock in to verify it I don’t know what will happen! Too much up in the air business and extremely confusing to IPs and the clients haven’t even been notified!!

  10. We need more money cause it is getting to expenses living in Sacramento and have not had a raise in quite sometime

  11. Deb Hamilton says:

    I’m a middle-aged mom caring for my adult daughter and being forced to use the EVV system here in our home state of Illinois. I have a Master’s degree from Bradley University, live in the Chicago suburbs, love Shakespeare, am an accomplished French bread baker, and harbor a great degree of resentment for being forced to punch in and out on an electronic timeclock in my own home. The EVV system diminishes and humiliates me; it insultingly insinuates that I’m not capable of managing myself or my home.

  12. Rosie Valenzuela says:

    This program is not only intrusive, invasive, illegal and altogether another job! This is illegal to have in HUD housing as they do not allow gps devices. It’s crazy to b monitoring my son going poop by reporting start & finish!! Disabled have rights of privacy!!
    Whomever thought up this idea of monitoring fraud needs to rethink of another method. The percentage of fraud in ihss is so minimal, not worth having to pay a third party mega bucks to monitor.

  13. No EVV, we need our privacy

  14. Susan Pellegrino says:

    Our state of Calif is trying to implement this mandatory program. As a caregiver for my spouse it is an unnecessary invasion of privacy. However, it is implemented, it will take and require time that can be used to care for our recipient(s). It is discriminatory against those who are disabled or chronically ill. Being a caregiver is not an easy job. For most caregivers, this was not a career choice. Yet, we make sacrifices daily, we rise to meet every possible challenge we face, all in an effort to ensure our love one receives the quality and the continuity of care they need, they deserve and would not receive in a facility! We do this for wages at or just above minimum wage, being compensated for a capped amount of hrs when in fact we do provide care 24/7! Many caregiver’s have earned degrees, many of us have left lucrative careers or owned businesses. EVV will be another hoop we must jump through in order to keep our love one cared for at home. I resent the fact that the federal government wants to chain us down, hold our recipient and those who care for them as prisoners, take away yet another right to live an independent life as much as their disability or chronic illness allows!

  15. Jessica Danner says:

    My client is non verbal and bc of her unique condition is also considered quadriplegic by her doctors. How is she supposed to be able to verify anything?!?! This is so biased against people in her situation and is causing more stress where it is not needed!

  16. Darlene York says:

    AS a home health nurse I found this system to be more headaches then it was worth. There were times I used this system I would get called and said I didn’t clock in out ; there were times it would not be working properly. Nurses need to caring for their patients instead of worrying about using these troubled devices.

  17. Rajai Saleh says:

    I want to add that here in Ohio, consumers haven’t really had the chance to be informed about EVV other than through their providers. The state hasn’t sent out notifications or educational material. This is starting in less than a month! Only a few consumers have attended stakeholder meetings. Providers are mostly invited. There was a short public comment period that wasn’t very publicized.

  18. Danny Brown says:

    This system is set up to fail!!! When it only took 30 min to explain how to use it then three more hours explaining all that can go wrong just tells me that they are rushing as always which means mistakes will be made paychecks will get held up and who suffers we do. Does this help the client in any way “NO”

  19. Sharon Maliff says:

    It took an hour to hear what the device was for. It was then 3 hours longer to hear about all the codes and means to “ fix” issues than could pop up. For what? It is another means to delay our already meager pay. It only benefits the government. And we know how screwed up it is. I have been a nurse for almost 40 years. I have worked hard every day of my life to help clients stay well, and in their own environments. It gives me pleasure to see individuals experience life, with my assistance. To live their best life. Don’t treat any of us like criminals!

  20. I’m in Ohio and my providers are in training. The EVV will be implemented January 8 and contain GPS. I am a consumer and rely on my aides morning, noon, and night! This is just another aggravation for them and a reason for them to jump ship! Please find an alternate way to fight fraud!!!

  21. Melissa Day says:

    The implementation of the EEV in Ohio on January 8th is going to make feel more disabled than I’ve ever felt in the past 23 years of quadriplegia. It’s bad enough to be in prisoned by paralysis but now I’m losing my freedom to go where ever I want and have my providers meet me there. I fought for the implementation of Ohio’s Medicaid Buy-In for Workers with Disabilities so I and other individuals receiving HCBS waiver could keep our long term care needs out in the community, go to work, and live the American Dream. Now because we require HCBS waiver to live a some what “normal” life, we are losing our right to privacy. For instance, if I’m out shopping more than 1000 feet from my home and the address I’m at is not on the list of approved address then either I’ll have to stop what I’m doing to go home or my provider will not get paid. I’d like to see all the congressman and woman who supported the 21st Century Cures Act be subjected to the same scrutiny.

  22. Charlie Carr says:

    I applaud NCIL for gathering this painful testimony and hope that it will serve as a significant resource in litigation. Indeed, not only does it violate our right to privacy it pushes the envelope of Olmstead especially given the unmanageable EVV systems sold by large private for profit companies that make a difficult system to survive in the community even harder Furthur, attendants don’t want it and are leaving or not taking the jobs. Finally no other protected class receiving public benefits is tracked by satellites in the name of “program integrity”. This is IL 101 and we need to fight to keep control of our lives. #nogps

  23. Kim Haubert says:

    Why couldn’t we be aloud to sign caregivers in and out through MITS or DODD. INSTEAD of tracking my son and invading his rights and privacy we are legal amercian citizens of the UNITES STATES OF AMERICA so where are our rights as stated in the 14th amendment .So whoever thought this through dont know the laws of our country apparently this could be handled in more senseable way and won’t cost millions of dollars and won’t invade privacy. YOU WILL NOT GPS MY SON YOU DIDNT GET MY SIGNATURE TO DO SO NOR DO YOU HAVE NO RIGHT TO GPS HIM IN HIS HOME .

  24. Holly Sliter says:

    I truly believe this is an invasion of our privacy. I feel as though we are being watched by ” big brother”. Or, that I am a criminal on house arrest. There are so many unanswered questions. How is an aide supposed to run errands for a client if the “care giver” has to stay within a certain amount of feet from the device? What is the consumer has an incontinent episode out side of the time frame that he or she is “allowed to receive care. On my care plan it states that my hours may vary due to my needs. It is as if this will no longer allowed. I DO HAVE A LIFE OUTSIDE OF MY HOME. I do work, and my aide comes to my job to assist me with toileting. How will that work? I am so outraged over all of this. I could go on typing for ever, but I can’t because I have a life.

  25. Sharing a message I’ve sent anonymously to Ohio Department of Medicaid (anonymous for fear of retaliation):
    ——————————————–
    I take care of my permanently disabled best friend who lives with me. He’s family to me, a brother in my eyes. I’m much more than just some ‘non-agency personal care aide’ and he chose me to care for him because of that. Unlike agency providers of the past he trusts me and knows I will always have his back, always be here to help him.

    This is me doing the only thing I know to do to help him regarding this certain-to-be-ruled-unconstitutional EVV system. He had me write to Medicaid hotline on his behalf stating his wish to opt out of this insanity. I’m here to echo that wish for him in the strongest possible terms. The people at Sandata, Medicaid, Congress, etc have ZERO right to know his location at all times, ZERO right to effectively place him on house arrest lest he risk me not getting paid or having to fight to get paid, ZERO right to restrict him to a certain schedule of when to get up, go to bed, etc especially when his ASP clearly states that as long as we don’t exceed the allotted hours per week that the ‘shift’ times can vary. We will not be adhering to a set schedule just to please Congress or a tracking device. He will continue to get up when he wants, eat when he wants, go out when he wants, use the restroom when he wants, etc. You and Congress have ZERO right to negatively impact his life in the way this system can.

    We do not have the time, energy, or money to start a legal battle with Medicaid or the US Congress but we know the cases are coming. And eventually a federal judge or the Supreme Court will find that this system is an unconstitutional invasion of privacy and an undue burden on the lives of disabled Americans. He’s got enough medical equipment and devices to deal with, enough things to plug in, and adding a device that isn’t medically necessary is very much an undue burden. Expecting him to speak into, hold, or somehow sign on such a device is an undue burden. He refuses. We believe it’s his right to refuse.

    For all the reasons mentioned I respectfully request you provide me information on how to get him out of this EVV system. There must be a way to opt out. I know for a fact there are other families in our situation where a loved one is providing care for their best friend or relative and they’re all they’ve got. Maybe their loved one is blind, mute, deaf, or in some other way so disabled that use of this device is impossible. You can’t tell me there’s not a way out. So what is it? What do we do?

    Thank you for your time. Please respond to the e-mail address this message is sent from.

    Have a merry Christmas.
    ——————————————————–

    • Rajai Saleh says:

      I am a consumer who is in a very similar situation. My partner who lives with me is also my non-agency personal care aide and I’ve raised the same concerns. This makes more sense for agency aides, but not independent providers who may only work for one or two people. You are definitely not alone in this. I hope there is a way out.

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