I am writing regarding the Electronic Visit Verification (EVV) mandate within the 21^st Century Cures Act.

My 27-year-old daughter is medically fragile and requires 24/7 care.  Under the CCC+ waiver¹, she is allowed 42 hours attendant care weekly and 480 respite care hours annually. One of the many benefits of this waiver is that it allows my daughter to enjoy her community and be an active part in it.  Unfortunately, under the “21^st Century Cures Act”² Electronic Visit Verification (EVV) mandate, her ability to be out in the community is now greatly lessened and her privacy has been stripped from her.

This was signed into law in December 2016 yet we are just now being informed of the mandate.  We are expected to be in full compliance by October 1 and have been given only a matter of weeks and very little information to prepare for this or risk losing services and pay.  This is wrong on so many levels.

Per this act, her attendants are now required to clock in and out each shift via a downloadable mobile app or a designated landline which will use biometric data (voice recognition).  The attendant’s location is tracked each time, which means my daughter’s (known as the “consumer”) is, too, by default.  HIPAA laws come to mind. 

My daughter’s attendants submit their timesheets electronically every 2 weeks.  It is IMPOSSIBLE to go over the hours (though they wouldn’t try to anyway) as the electronic submission monitors that.  They are now being required to remember to clock in and out every day, instead of submitting twice a month.  One attendant doesn't have a smart phone, so she'll have to use a landline.  (I’m still unsure how that will work when she has driven an hour to pick up my daughter.)  These waivers were created to keep individuals/consumers in the community and to save the Commonwealth of Virginia money by reducing the number of individuals going into state care due to lack of supports.  Now, they're being confined to home oftentimes to ensure their attendant can clock in or out. 

So much contradictory information has been released by the government.  For instance:

“Active location tracking throughout the service is one of the most common misconceptions about EVV technology” (p. 24).³

The very next page (p. 25) states:

Considerations for Using Location Services in EVV Systems

 “To help ensure the EVV system is both flexible and reliable when verifying community locations, consider:

• Populating the EVV system with individuals’ anticipated and preferred community locations. Sources of locations could include:
• Person-Centered Service Plans – obtain a list of individuals’ planned activities.
• Individuals, families, and case managers.
• Allowing individuals and families to readily update their lists of community locations, such as by requesting updates through their case manager or through the EVV system’s web portal.
• A process for reviewing claims for services rendered outside the locations established by the individual (i.e., “exceptions”) and monitoring for outliers. For example, multiple location edit requests in a same day, or every day for a month might flag a further review by the case manager or the provider.
• Secondary verification, such as requesting the individual’s electronic signature for each check-in/out, used in conjunction with location tracking to further ensure the visit began or ended in the correct location.³

The first claim about the misconception is cleverly worded to say “active” tracking.  Perhaps it isn’t tracking during, but it is required by law to reveal every location—which means everywhere the individual goes is documented.  It is STILL TRACKING.

Why must we verify community locations (p. 25)? What business is it of anyone else’s if the individuals go to a doctor's appointment or to TJ Maxx for shopping or just for a drive in the country? Why should we populate anything with "preferred community locations" or let them know about "planned activities" (p. 25)?

Claims for services rendered "outside the locations established by the individual and monitoring for outliers...might flag a further review” (p. 25). What, exactly, are "outliers" and why are they not allowed?  What are individuals with disabilities no longer allowed to do in the community?

So, out of fear of being "flagged,” will individuals be discouraged from thinking for themselves? From changing their minds on the restaurant they're going to or the park visit that was scheduled? "Heck no, we can't go to the next town to sightsee--it's not on your plan of activities and the government might flag it!" That is what this law is doing.  It is stripping disabled individuals of their human and civil rights. 

Why stop at their right to privacy & liberty? Let's remove their pursuit of happiness, too--the life part will eventually follow.  And why must it be told when an individual goes to the doctor?  How does that not violate the HIPAA law?  No one knows to whom this information goes or how it is used--there has been zero transparency regarding this.

So, looking at this law practically--what if an individual is in the middle of a seizure?  Or is needing a trach cleaned?  Or has vomited and is needing cleaned up?  Or is choking?  Or is needing to be transported to the restroom?  Or has needed an unexpected bath because of an accidental spill or sickness or bowel movement?  Is the attendant expected to drop everything they're doing in caring for the individual so they can go to clock in or out at the expense of the individual receiving care?  There is so much potential liability here and it’s terrifying.

The Americans with Disabilities Act (ADA) website (highlights mine):

“The ADA is one of America's most comprehensive pieces of civil rights legislation that prohibits discrimination and guarantees that people with disabilities have the same opportunities as everyone else to participate in the mainstream of American life -- to enjoy employment opportunities, to purchase goods and services, and to participate in State and local government programs and services. Modeled after the Civil Rights Act of 1964, which prohibits discrimination on the basis of race, color, religion, sex, or national origin – and Section 504 of the Rehabilitation Act of 1973 -- the ADA is an "equal opportunity" law for people with disabilities.”⁴

It continues:

“Sec. 12102. Definition of disability

As used in this chapter:

(1) Disability

The term "disability" means, with respect to an individual

(A) a physical or mental impairment that substantially limits one or more major life activities of such individual;

 (2) Major Life Activities

(A) In general

For purposes of paragraph (1), major life activities include, but are not limited to, caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working.”⁵

Finding attendant care is difficult enough.  Less than $10 an hour and zero benefits.  And now, they have the pleasure of being tracked and monitored (by forced use of EVV) all under the guise of cutting down on fraud and ensuring the individual is receiving the care they need.  It is clear—in reading the fine print—that ensuring quality care is not a factor.

Fraud won't be decreased.  As a matter of fact, I see an increase in cost for states due to loss of attendant care--families that had been helped prior will no longer have assistance and will be faced with difficult decisions on placement.  It has explicitly removed the entire “self-directed” part of self-directed care.  It is now government-directed.

The cleverly worded regulations & rules are peppered throughout documents from DMAS (Department of Medical Assistance Services--the agency that administers all Medicaid and FAMIS health insurance benefit programs in Virginia).  For instance (emphasis mine): 

From page 9:

There will be times when an attendant does not clock-in/clock-out appropriately
§ Forgets to clock- in /clock-out
§ Phone not working/Didn’t have phone
§ App was not working
§ Member had an emergency

Manual entries will be monitored by DMAS and MCOs; continued non-compliance may lead to disenrollment from CD services.⁶

Legitimate reasons for requiring manual entries:

• I forgot to clock in because the consumer was having a seizure.
• My phone wasn't working because...well...technology.
• The app wasn't working (not the attendant’s fault)
• Consumer had an emergency and attendant chose to care for the consumer rather than electronically clock in at start of shift, making a choice between potentially the consumer’s life or meeting EVV's requirement. (Not a hard decision, and yet, it is “non-compliance” that could lead to the consumer losing services.)

DMAS calls all these reasons “non-compliance” and may lead to disenrollment.

Suppose an attendant does flagrantly disregard all these rules. How is it the consumer's fault? Why is the individual needing services the one who could lose services because of what the hired attendant does?

From a personal viewpoint, those who say we should be "grateful" because it's Medicaid and a “gift” to us, do you know what this waiver allows us to do?  It allows me to work 2 jobs.  It is allowing me time to earn my bachelor's degree.  My jobs and my degree mean I am and will be paying more into the Commonwealth through taxes.  But even more than that, it is allowing me to provide a wholesome and safe life for my daughter.  It is allowing me to take her on mini vacations occasionally.  It is allowing me to buy all those things that aren't covered on her insurance.  It is allowing me to get refreshment so I can be at 100% when I care for her and provide everything she needs for a well-rounded, happy, safe & secure life--all those things we typical people have and take for granted.  She deserves no less, and in many cases, deserves even more considering all she has been through. 

Speaking on behalf of those who care for a family member, these programs allow them to care for their loved ones in their homes and communities while reducing the costs to the Commonwealth.  The individual is not a ward of the state—these waivers have allowed them the care they deserve by attendants willing to work for less than $10 an hour for an allotted number of hours per day.  Compare that to the average $114,000 a year for Medicaid-funded nursing home care and $48,000 a year for assisted living. States that created these waivers made a frugal financial move.  This EVV mandate is setting us back to pre-waiver status and will create an influx of individuals going into state-funded nursing homes due to inability to comply.  Already in some instances, families have lost their attendants because the attendant refuses to be tracked or monitored with biometrics.

The individuals receiving the care are the true victims here.  They will be the ones feeling the brunt of this atrocity, and I, for one, am not okay with that.  This EVV mandate is turning the individuals’ homes into institutions.  The only times the individuals can go out into their community are when the attendant is with them.  Now, in many instances, they’re confined to their homes. 

Informational material⁷ put out by DMAS states that individuals may receive services out in the community (p. 20), but how does that translate when the attendant is required to clock in and out from the individual’s home telephone due to lack of mobile data/cell service?  They are tethered to the house.  Not everyone has mobile data, and those who don’t are required to use voice recognition via landline (biometric data collection—another issue entirely!)  So, DMAS’ proclamation that individuals will still be able to receive services in the community is utterly misleading!

I refer you to the U.S. Department of Justice Civil Rights Division Statement of the Department of Justice on Enforcement of the Integration Mandate of Title II of the Americans with Disabilities Act and Olmstead v. L.C. (highlights mine):

“What types of remedies address violations of the ADA’s integration mandate?

A:  A wide range of remedies may be appropriate to address violations of the ADA and Olmstead, depending on the nature of the violations.  Remedies typically require the public entity to expand the capacity of community-based alternatives by a specific amount, over a set period of time.  Remedies should focus on expanding the most integrated alternatives.  For example, in cases involving residential segregation in institutions or large congregate facilities, remedies should provide individuals opportunities to live in their own apartments or family homes, with necessary supports.  Remedies should also focus on expanding the services and supports necessary for individuals’ successful community tenure.  Olmstead remedies should include, depending on the population at issue: supported housing, Home and Community Based Services (“HCBS”) waivers, crisis services, Assertive Community Treatment (“ACT”) teams, case management, respite, personal care services, peer support services, and supported employment.  In addition, court orders and settlement agreements have typically required public entities to implement a process to ensure that currently segregated individuals are provided information about the alternatives to which they are entitled under the agreement, given opportunities that will allow them to make informed decisions about their options (such as visiting community placements or programs, speaking with community providers, and meeting with peers and other families), and that transition plans are developed and implemented when individuals choose more integrated settings.”⁸

To the United States UNITED STATES OF AMERICA Plaintiff, vs. COMMONWEALTH OF VIRGINIA, Defendant, Civil Action No. 3:12cv59-JAG (highlights mine):

“Congress passed the Americans with Disabilities Act ("ADA") in 1990, providing further impetus to the movement toward community services. In the ADA, "Congress explicitly identified unjustified 'segregation' of persons with disabilities as a 'for[m] of discrimination.'" Olmstead v. L.C., 527 U.S. 581, 600 (1999). "The ADA stepped up earlier measures to secure opportunities for people with developmental disabilities to enjoy the benefits of community living." Id. at 599. (p. 4-5).

…as interpreted by Justice Ginsburg in Olmstead, supra. One purpose of the ADA is "to secure opportunities for people with developmental disabilities to enjoy the benefits of community living." Id. at 599 (p. 8).

To ensure that all services for individuals receiving services under this Agreement are of good quality, meet individuals' needs, and help individuals achieve positive outcomes, including avoidance of harms, stable community living, and increased integration, independence, and self-determination in all life domains (e.g., community living, employment, education, recreation, healthcare, and relationships), and to ensure that appropriate services are available and accessible for individuals in the target population, the Commonwealth shall develop and implement a quality and risk management system that is consistent with the terms of this Section (p. 35).”⁹

And finally, to the Arc’s statement on human and civil rights (highlights mine):

“Many individuals, businesses, federal, state, and local government agencies and other entities remain unaware of or ignore the human and civil rights of people with intellectual and/or developmental disabilities. As a result, people with intellectual and/or developmental disabilities face unique challenges, including the following:

• A history of discrimination and exclusion from meaningful choice and participation in employment, housing, voting, transportation, and other programs, activities, and services provided by the public and private sectors of society;
• Societal failure to provide the supports wanted and needed for full community participation, equal opportunity, independent living, and economic self sufficiency;
• Overprotection without freedom to exercise individual rights;
• Prejudice that views people with intellectual and/or developmental disabilities as unworthy of progressive public policies and related public funding; and
• The presence of other factors that, in combination with intellectual and/or developmental disabilities, expose them to increased risk of rights violations. These factors include: age; gender; race/ethnicity; sexual orientation; cultural, linguistic, geographic, or spiritual diversity; economic status; severity of disability; intensity of needed supports; and others.”¹⁰

As a tax-paying citizen of the great Commonwealth of Virginia and the United States of America, I ask you—I implore you—to recognize and take action against the oppressive nature of this law and the blatant breaching of human and civil rights that accompanies it.  Our most vulnerable population is worth it.

Sincerely,

Teresa A. Catron
Virginia

Links

¹ http://www.dmas.virginia.gov/files/links/630/CCC%20Plus%20Waiver%20Fact%20Sheet.pdf 

²http://www.dmas.virginia.gov/files/links/684/21st%20Century%20CURES%20Act.pdf

³https://www.medicaid.gov/medicaid/hcbs/downloads/guidance/evv-requirements-intensive.pdf

⁴https://www.ada.gov/ada_intro.htm

⁵https://www.ada.gov/pubs/adastatute08.htm#12102

⁶https://www.dmas.virginia.gov/…/EOR%20and%20Attendant%20EVV…

⁷http://www.dmas.virginia.gov/files/links/3865/EOR%20and%20Attendant%20EVV%20Presentation%20June%202019.pdf

⁸https://www.ada.gov/olmstead/q&a_olmstead.htm

⁹http://www.dbhds.virginia.gov/assets/document-library/archive/library/developmental%20services/dds_final%20edva%20order%20and%20settlement%20agreement.pdf

¹⁰thearc.org/position-statements/human-civil-rights/