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

Action Alert: Ask Your Representative to Support Proposed Bill Protecting People from EVV

Advocates nationwide are working with Representative Diana DeGette (D-CO) to draft a bill that will prohibit the use of global positioning systems (GPS) and biometric data collection in Electronic Visit Verification (EVV). This is the first step in our fight to stop EVV!

The draft bill will first be introduced in the U.S. House of Representatives Energy and Commerce Committee. If your Representative serves on this committee, please call or email them to ask that they co-sponsor Representative DeGette’s proposed bill!

How to contact: All members of Congress can be reached by calling the Capitol Switchboard at (202) 224-3121 or (202) 224-3091 (TTY). You can also find your Members’ contact information at house.gov.

You can use the following script for assistance:

“Hi. My name is [Name] I am a constituent of the Representative. Electronic Visit Verification (EVV) is federally mandated under the 21st Century Cures Act for all Medicaid-funded home care services. Use of GPS and biometric data collection in EVV violates privacy rights of disabled Americans and threatens decades of disability advocacy work. Please co-sponsor Representative DeGette’s proposed bill to prohibit GPS and biometric data collection in EVV. To co-sponsor this proposed bill, call Representative DeGette at 202-225-4431. Thank you.”

Additional Information

What is EVV?

Electronic Visit Verification (EVV) is any electronic method to verify that a personal care assistant or home health aide provides services to a disabled consumer. The 21st Century Cures Act, federal legislation signed into law December 2016, requires that all states implement some form of EVV for all Medicaid-funded home healthcare and personal attendant services, including consumer-directed services, by January 1, 2020.

What privacy concerns has EVV created?

Nearly all EVV systems in development or currently in use geo-track consumers and employees via GPS. This data creates a map of when and where disabled individuals and their personal assistants live and frequent in the community. Many other EVV systems use biometric data collection such as fingerprinting, facial recognition and voice recognition. These technologies may be used to record audio or take photographs of consumers and personal assistants without consent or knowledge. Consumers and employees are not able to opt out of EVV.

Global Positioning Systems (GPS) and biometrics are a direct and excessive violation of the privacy and potential safety of individuals living with disabilities. Given the growing frequency and size of private data breaches, consumers are or will be required to tolerate additional intrusions and burdens under EVV just to receive the life-sustaining care on which we rely to live independently and avoid institutionalization. Americans are guaranteed Constitutional protection from these types of privacy intrusions, and disabled Americans demand equal protection under the law.

NCIL believes that EVV threatens decades of advocacy work.

  • People with disabilities have the right to control our own lives and destinies.
  • EVV in all forms erodes consumer rights and eliminates consumers’ ability to direct their care.
  • GPS and biometrics are further shrinking the chronically inadequate pool of available home care workers, as personal assistants leave the field completely due to privacy violations, and inadequate wages and benefits.
  • The burgeoning EVV industry is not forthcoming about the data it collects and stores. Threats to identity protection and digital privacy breaches should be eliminated where possible.
  • Stakeholder groups must include and empower people with disabilities to be drivers and experts in the development of EVV systems and policies that uphold the freedoms, rights, dignity, privacy and independence of people with disabilities.
  • The federal EVV mandate is a massive financial giveaway to technology vendors of EVV systems. While many vendors tout the need for EVV as a method to reduce fraud, data demonstrates consumers and personal assistants are not a warranted source of these allegations.
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Comments

  1. I am with my son 24/7 365 . I am his mom,provider,and guardian. I still do not understand why we should have to use evv. It should not matter if I bill units or daily rate. I bill 60 hours a week but have him at least 150 hours a week if not more. Also having a device in our home his a violation of our privacy. It should not have gps,audio or any kind of tracking device. Thank you for your time.

    • This is exactly my situation. How do you clock in and out when you’re both paid and unpaid, attendant and companion? I’m “on duty” whenever another person is not present for him. At the end of the week I just bill for myself whatever hours were left available but he’s with me 24/7 except for whatever the others work. Also he will flip out if he has to do anything to approve the clocking in and out of workers. He can’t do it when he’s asleep anyway (if I’m not here someone else is on the clock because he cannot be left alone.) His employer of record doesn’t live in the home and has a full time job so how is she going to approve every shift in real time?

      I have so many issues with the GPS. Including being told years ago that all services had to be provided inside the state of Virginia. I said “What if he wants to go to Six Flags in MD for the day, or visit grandparents in PA?” I got no decent common sense answer. As for pictures? OhHellNo. Just… No.

    • Maryann says:

      I’m in the same position. My aunt lives with me. She and I are together all the time. If I go to the store, she’s with me. It’s like having an infant. I can’t just walk away and leave her alone. If we go on vacation, we don’t usually stay in our community. What happens then? What if we’re out of town?
      This feels very much like a burdensome, intrusive measure to discourage people from participating in the medicaid waiver program. If that’s so, look out nursing homes. Within a very short time, they will be filled beyond capacity thereby endangering so many elderly/disabled people across the country. With all the money spent on the CCC+ program, multiple fiscal agents, and now EVV, it seems like the federal government is the one committing fraud on the very consumers the program was originally designed to help.

  2. This is a critical time for the disability community to speak out against the EVV profiteers that have no problem following us around using GPS and biometrics. Representative DeGette needs to hear from us and from Representatives on Energy & Commerce before she’ll file a bill. Please take time to follow through and make a call or email your Representative if they are on E & C. Every contact matters.

  3. I believe that EVV takes away the consumer rights and eliminates consumers’ ability to direct their own program.

  4. Claudio Darezzo says:

    This is beyond disgusting and i wont allow it to happen to me.

  5. Barbara Cary says:

    It is a violation to privacy my daughter needs 24 hour care when I don’t have caregivers in the home I do the care ….. she is loved in the home and taken care of very well and deserves that right ….

  6. Hi. My name is Corey I am a constituent of the Representative. Electronic Visit Verification (EVV) is federally mandated under the 21st Century Cures Act for all Medicaid-funded home care services. Use of GPS and biometric data collection in EVV violates privacy rights of disabled Americans and threatens decades of disability advocacy work. Please co-sponsor Representative DeGette’s proposed bill to prohibit GPS and biometric data collection in EVV. To co-sponsor this proposed bill, call Representative DeGette at 202-225-4431. Thank you.”

  7. Karen I Palacio says:

    I get paid to take care of my momfor 40 hrs a week. Meanwhile my hours go beyond 40 hours a week and never once complained and ask for compensation for the extra time. Dont understand the use for evv. For almost a year the vendor is tracking my time. I was asked to use my phone to clock in and clock out and also requires my mom signature. Even though the coordinator is always very helpful and always very respectful.

  8. This is bull it’s like beening in jail for both parties . Not right

  9. Rosalinda says:

    Hello this invasion of privacy I work with my sister in law for 21 hours. I clock in and out from her own phone. I sometimes I have to clock in from her car service due appointments this would be difficult if she has doctors appointments and when picked up it on the time I have to clock in the use of GPS and biometric data is threatens disabled Americans.

  10. George Santiago says:

    Hi. My name is George Santiago. Electronic Visit Verification (EVV) is federally mandated under the 21st Century Cures Act for all Medicaid-funded home care services. Use of GPS and biometric data collection in EVV violates privacy rights of disabled Americans and threatens decades of disability advocacy work. Please co-sponsor Representative DeGette’s proposed bill to prohibit GPS and biometric data collection in EVV. To co-sponsor this proposed bill, call Representative DeGette at 202-225-4431. Thank you.”

  11. Martine Edjuku says:

    They have to know that when we are taking care of our family members, our hours always go beyond but we don’t need to complain about that. My grandmother is 87 years old and I get paid for working 35 hours for her. Sometimes I have to pay someone if I need help to take care of her, when I am out of duty for my grandmother and I have to go to my other job. Thus, what’s the importance of EVV?. Taking people’ Imagine doesn’t represent nothing to me. I believe this EVV try to take away the client’s confidentiality and liberty.

  12. Having to take a picture of my child, in all sorts of positions to validate I’m with her is a violation of her privacy; as well as mine….. And I’m my opinion it’s a crime. At what point, does it become too much. After my it’s bad enough, that we live in police state. At every turn style there’s a camera watching your every move. You can’t blow your nose, take piss, pick your nose with out a camera recording every action. If we as family care givers weren’t taking care of family members. I can see the process being used for non-family to track the care. But if you’re caring for your mom, daughter, son, father. This process is a bit much. An invasion of our privacy, and it’s a crime.

  13. Lisette Tomko says:

    This requirement seems to undermine existing rights of both the patient and caregiver. I care for my mother 24/7 and am compensated for a fraction of hours attending to her needs. For the last 10 years I have cared for her without enrolling in Medicaid. I was accountable to no one.

    The Cdpap program is a salvation in that it now enables me to earn some income to offset loss of earnings to care for her.

    I should not have to trade privacy for income. Personal Assistant’s make minimum wage and perform the task patients would receive in a hospital or nursing home. Yet the compensation nowhere reflects the time spent caring for the patient.

    I value both our privacy and was not aware that the electronic time sheet was data being shared with Medicaid and others. We are not under house arrest, and or should be monitored in a manner that makes you feel you are wearing an ankle bracelet when a criminal is on a parole.

    I thought electronic time sheets were a convenience to payroll departments; however now that I am aware of the true nature of the device, I oppose it’s use.

    Please support the bill to keep our privacy in place.

  14. My Name in Rocio Colon I am a Supervisor Support Specialist for the Center for Disability Rights. This is will affect so many people exposing privacy information . Take in consideration the children who will be affected by this .

  15. “Hi. My name is CynthiaI am a constituent of the Representative. Electronic Visit Verification (EVV) is federally mandated under the 21st Century Cures Act for all Medicaid-funded home care services. Use of GPS and biometric data collection in EVV violates privacy rights of disabled Americans and threatens decades of disability advocacy work. Please co-sponsor Representative DeGette’s proposed bill to prohibit GPS and biometric data collection in EVV. To co-sponsor this proposed bill, call Representative DeGette at 202-225-4431. Thank yo

  16. Hi. My name is Kim I am a constituent of the Representative. Electronic Visit Verification (EVV) is federally mandated under the 21st Century Cures Act for all Medicaid-funded home care services. Use of GPS and biometric data collection in EVV violates privacy rights of disabled Americans and threatens decades of disability advocacy work. Please co-sponsor Representative DeGette’s proposed bill to prohibit GPS and biometric data collection in EVV. To co-sponsor this proposed bill, call Representative DeGette at 202-225-4431. Thank you.”

  17. Dominique says:

    “Hi. My name is Dominique I am a constituent of the Representative. Electronic Visit Verification (EVV) is federally mandated under the 21st Century Cures Act for all Medicaid-funded home care services. Use of GPS and biometric data collection in EVV violates privacy rights of disabled Americans and threatens decades of disability advocacy work. Please co-sponsor Representative DeGette’s proposed bill to prohibit GPS and biometric data collection in EVV. To co-sponsor this proposed bill, call Representative DeGette at 202-225-4431. Thank you.”

  18. Anna Ortiz says:

    My mom is disabled and I’m her personal care taker and we need this CAPPAD

  19. Many people with disabilities are at risk for being taken advantage of. This system puts their whereabouts out there without their consent. It’s forcing people to choose between protecting themselves or having care. No other population would be mandated that they be tracked. Change disabled and add Muslim or minority race and ask yourselves if it’s still such a great idea or is it discrimination. This won’t stop any fraud but will make it more difficult to get care providers because no one wants tracked while on the job. How about we use it on Congress first!

  20. Janice davis says:

    Hi. My name is Janice. I am a constituent of the representative. Electronic visit verification (evv) is federally mandated under the 21st century cures act for all Medicaid funded home care services. Use of gps and biometric data collection in evv violates privacy rights of disabled Americans and threatens decades of disability advocacy work. Please co-sponsor Representative DeGeette’s proposed bill to prohibit GPS and biometric data collection in evv. To co-sponsor this proposed bill call representative DeGette at 202- 225- 4431.Thank you

  21. Linda Austin says:

    Hi. My name is Linda. I am a constituent of the representative. Electronic visit verification (evv) is federally mandated under the 21st century cures act for all Medicaid funded home care services. Use of gps and biometric data collection in evv violates privacy rights of disabled Americans and threatens decades of disability advocacy work. Please co-sponsor Representative DeGeette’s proposed bill to prohibit GPS and biometric data collection in evv. To co-sponsor this proposed bill call representative DeGette at 202- 225- 4431.Thank you

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