Disability advocates are pushing for clearer privacy protections as states use a one-year extension to comply with a Medicaid requirement that personal care attendants electronically check in and out when providing services to people with disabilities.

President Donald Trump signed bipartisan legislation over the summer that delayed until January 2020 the start of electronic check in, which is intended to curb fraud. The bill also required the Centers for Medicare and Medicaid Services to solicit public comment on the new mandate from patients, caregivers and state health officials by the end of this year.

In the meantime, advocates are calling for more involvement from federal officials. Late last month, the Consortium for Citizens with Disabilities, a coalition representing dozens of disability advocacy groups, sent a letter to CMS urging more stakeholder input and a clear directive to states not to use GPS tracking or “invasive devices” equipped with cameras, microphones or video.

Advertisement - Continue Reading Below

Alison Barkoff, director of advocacy for the Center for Public Representation, said states have varied considerably in addressing privacy concerns as they work to meet the new electronic check-in requirement.

On one end is Ohio, which launched its first phase of so-called electronic visit verification, or EVV, in January with GPS-equipped phones that transmit information to the state’s vendor. State Medicaid officials said Ohio’s program was proceeding as planned — even with the federal delay — and noted that claims will be denied starting Nov. 15 if EVV records don’t match provider billing records.

Meanwhile in California, Barkoff said the state has had thoughtful planning and public engagement. While no system has been rolled out, the state has ruled out GPS tracking. Additionally, California has said it views EVV as largely a chance to tie in electronic time sheets to expedite payment, which could improve caregiver retention.

“We’re going to continue to push CMS in putting more guidance out,” Barkoff said. “We think that CMS plays a really important role in indicating what some of the least burdensome processes are and to share that with states and stakeholders.”

In addition to privacy, advocates say they’re also concerned about usage of data. CMS has previously said GPS is not required, but states also have wide latitude in how they design their programs.

“It’s so ambiguous that several states are really doubling down on expensive devices and burdensome processes and procedures that don’t necessarily protect the civil rights of people with disabilities and support workers,” said Sarah Meek, director of legislative affairs for the American Network of Community Options and Resources, or ANCOR. “People don’t want to be tracked and how is that data going to be used?”

CMS has not responded to the advocates’ letter but on Nov. 7, the agency will hold a conference call to answer questions from people with disabilities, caregivers and family members.

“Stakeholder input is a valuable component in addressing electronic visit verification and privacy concerns,” a CMS spokesperson said in a statement to Disability Scoop. “Additionally, CMS has and will continue to respond to individual questions from states, providers and beneficiaries because stakeholder feedback is valuable to informing and developing future guidance for states.”

Also next month, the agency will begin electronically surveying states on their EVV progress. If they are unable to comply with the January 2020 deadline, starting in July 2019, they may apply for a one-year good faith extension until January 2021.