By Charlie Carr – September 12, 2022

Beginning in 2016, Sandata Technologies engaged a lobbying firm Arnold & Porter that donated $30,000 to congressional members who served on relevant committees in the Health Services Industry sector.

It's not a coincidence that Electronic Visit Verification (EVV) was included in HR 2446, the 21st-Century Cures act of the same year. Sandata is the largest provider of EVV software and training to the nation’s Medicaid agencies that are required by law to require EVV to beneficiaries of Home Health and Personal Care Services.

By influencing members of the Energy & Commerce Committee in the House, EVV was written into the law so that Sandata, MITC, and many others would line their pockets with a continuous flow of income based on sales of their products to taxpayer-funded Medicaid agencies. Representative Brett Guthrie (R) KY was the bill sponsor and sat on Energy & Commerce. The bill purported to “pay for” itself by saving $290 million over 10 years. This was later thrown out in an oversight committee hearing for having no basis in fact.

By influencing members of the Energy & Commerce Committee in the House, EVV was written into the law so that Sandata, MITC, and many others would line their pockets with a continuous flow of income based on sales of their products to taxpayer-funded Medicaid agencies.

Today, close to six years later after a stalled implementation effort by the previous administration to prematurely push out EVV into the states with scant guidance and very little enforcement of congressional requirement that there must be substantial stakeholder input into the design and implementation process, states are moving ahead to avoid federal FMAP penalties also written into the law.

Congress required that CMS provide an extension of one year for implementation because of the lack of input by stakeholders. Additionally, states could file for ”good faith exemptions” after that to even begin to address the enormity of incorporating EVV into home health and personal care services programs that have been in operation for decades. Immediately, disabled consumer employers were deeply concerned about surveillance using GPS on their employees. Naturally, the employees were also hesitant to be surveilled with their private information being provided to Medicaid agencies and their subcontractors that could be leaked, stolen, or shared.

No other Medicaid programs require tracking beneficiaries and violating their right to privacy.

Independent studies including a Data & Society research paper detail the ramifications of EVV and privacy and what the effect is on beneficiaries and the workforce. Potential PCS employees choose not to become providers not only because of low wages and no benefits but now they must agree to be surveilled.

Many legislators and policymakers allege that there's fraud, waste and abuse in PCS, however, in 2022 Applied Self Direction, a non-partisan technical assistance organization analyzed inspector General Office (IGO) data reported by 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 is approximately $100 billion.

In Texas alone, implementation of EVV is at $90 million and growing. When factoring in the rest of the country, EVV quickly becomes a $200 million industry with the federal government matching minimally 50% of the cost. Expenses are projected to grow, and maintenance of systems is covered by HHS. With all this happening in a five-year period it's easy to see why the “pay for” of $290 million over 10 years couldn't have missed the mark any further. At this point, EVV will never pay for itself but continue to be a black hole of taxpayer funded Medicaid dollars that don't save any money and, in fact, spend hundreds of millions of dollars annually on software and personnel expenses that states must bear the cost not just in terms of dollars but erosion of control and quality of life for its beneficiaries.

Since its inception, Medicaid has consistently been a target of conservatives that have termed it a ”cesspool of waste” further stigmatizing poor people as lazy malcontents that are looking for a free ride. In fact, 60% of non-disabled Medicaid beneficiary’s work. Large corporations like Walmart, McDonald’s and Amazon suppress health insurance benefits to low-paid workers and force them to enroll in Medicaid and food assistance to keep themselves and their families healthy and fed. This is the hypocrisy of the wealthy elite. They maximize corporate earnings by not paying a living wage and providing decent health insurance.

Unfortunately, the same forces are at work with EVV. HR 6000, commonly known as Cures 2.0 is in the House Energy & Commerce committee gathering support for a vote to pass it and get it to the Senate. This time, however, it contains language that prohibits the use of GPS in EVV. Disability rights advocates fought for this to stop the blatant privacy rights violations in the original bill and recognizes the severity of its impact on the worker crisis that every state in the country is experiencing in home health and personal care services programs. People with disabilities and elders can't get the assistance they need and are being forced into nursing homes.

The home care Industry objected because surveilling their employees is their business model. After months of negotiations, compromise language was introduced by the disability community that excluded home care from the prohibition of the use of GPS and has limited it to just personal care services programs where the person with a disability is the employer. Why isn't it moving? Is Republican leadership on board? No, some still insist on their tired go-to narrative that surveillance is necessary because fraud, waste, and abuse must be true even though it's proven to be false.

HR 6000 is important legislation that addresses pandemic preparedness, public health issues, drug development, and more. Its passage will be an important step in ensuring quality health outcomes for Americans but people with disabilities are being kicked to the curb by E&C Republican leadership. After all, they made a deal with EVV manufacturers who paid for the privilege.

The National EVV Consumer Employer Coalition calls upon Congress to do the right thing and accept the compromise language, vote to pass HR 6000 with this change out of Energy & Commerce and bring it to the floor for a vote. We urge every member of the committee to move beyond ideology and throw a lifeline to their constituents with disabilities who are drowning. Our lives are worth more in any measure than the bottom line of EVV companies.

Charlie  Carr - Is a nationally recognized leader in the independent living movement and cochair of the National EVV Consumer Employer Coalition. He is a co-founder of the National Council of Independent Living, founder and CEO of the Northeast Independent Living Program and was commissioner of the Massachusetts Rehabilitation Commission. He is now the Legislative Liaison for the Disability Policy Consortium.