Alicia of Ohio and the Quest for Independence

An aspiring artist and established disability advocate, I first came across Alicia on a whim through Twitter. Her posts first signified a commitment to helping others get caregiver services through Ohio’s Medicaid program. She opened my eyes to the hurdles those with disabilities jump through to maintain independence. And I learned about something new called Electronic Visit Verification. We met in Akron.


When most people think of caregivers, the first assumption is a home health aide – perhaps someone that checks in on elders, allowing them to stay in their home before moving to an assisted living facility or nursing home. However, most caregivers do not work exclusively with elderly populations – a large portion of those that need daily assistance are the disabled community. Aides ensure that activities of daily life are completed with dignity, including getting dressed, transfers in the bathroom, and preparing meals. Their roles are vital to a patient’s ability to stay out of the hospital.

“There are kids stuck in hospitals in our states, and they can’t go home to their families because there aren’t enough nurses able to take care of them.”

For Alicia, the caregiver crisis is deeply personal. Like many others across the country, Alicia has a disability and needs assistance to live as independently as possible. Between working on her artwork and participating in grassroots organizing for disability inclusion, she needs a little extra help with the more tedious day-to-day tasks.


Through Ohio’s Managed Care Programs under Medicaid, Alicia is qualified to receive ongoing services for her permanent disability. Without these services, Alicia would have to live in a nursing home, as there would be no way for her to personally afford a qualified assistant, and she cannot rely on friends or family to become her primary caregiver.

“The caregiver crisis doesn’t just affect home care – it affects nursing homes in community health both in Ohio and across the nation. Every 8 seconds, somebody new will need a caregiver.”


Alicia discussing her art

Across the country, there is a massive shortage of home health aides. With an aging population and more individuals with disabilities living independently, the demand for aides is unprecedented. In rural areas even moreso. A home health aide can be a stressful job with minimal payoff. Joining the field is an opportunity for those with limited certifications, but wages are low, and skilled nursing has become more accessible.

According to Alicia, the new requirements of home aides, particularly around electronic visit verification (EVV) and reimbursement schemes will only exacerbate this problem, causing more to leave the field. As a result, more patients needing daily assistance will have no choice but to enter a nursing home. Those fortunate enough to stay at home will face a lower quality of care, shorter visits and higher staff turnaround.


Electronic Visit Verification is a sort of in-home monitoring system for those receiving home health care under a Medicaid program. It quietly slid into the 21st Century Cures Act and has since permeated the country. The law broadly states that electronic verification programs must simply track the location, date, and time of service, along with the names of the consumer and provider.

Third-party tech companies have created EVV programs that use biometric and geo-tracking equipment, which fall outside of the stipulations of the law. However, because these programs are contracted with the state, many patients don’t have the option to refuse this type of tracking without losing access to their caretakers.

The intention is to reduce Medicaid fraud and to ensure that proper care is being conducted at the patients’ home. However these devices, which include a camera and audio recorder, essentially monitor disabled people in their own homes. This surveillance is discriminatory towards those experiencing financial hardship and disability because it compels them to ‘look the part’. It creates a vulnerable situation for the protection of their 4th Amendment right to privacy, never mind potential HIPPA violations.


“We have already had data breaches in Ohio. Social security numbers were posted online from the EVV tracking data and put thousands of people across the state at risk of identity fraud.”

Alicia has taken on the fight to Stop EVV, because this level of surveillance has great potential for the data gathered to be misused. It impedes on the privacy of those requiring home care services. But it also places an additional level of scrutiny on the home health aides that operate it. Being a few minutes late, or being unable to read the English-language system puts caregivers jobs at risk.


Alicia art 1 Alicia art 2 Alicia art 3

Through her art, Alicia hopes to highlight the challenges of obtaining home health services in Ohio. The faceless images remind viewers that disability can strike at any moment, leaving us in the hands of a system that is currently failing due to eligibility and reimbursement bureaucracy and understaffing.

Home health aides can be a source of strength and often preserve the livelihood for those seeking independence. If state governments provide adequate tools for patients to receive these services, it will benefit elders and those with disabilities. Part of the formula for bettering their community.

Kate PecoraKate Pecora is a senior honors student at the University of Massachusetts Amherst studying Healthcare Policy and Political Science. She is an advocate for rare diseases, primarily in the neuromuscular space. She, herself, is diagnosed with Spinal Muscular Atrophy Type III. Kate is currently traveling across the United States finding compelling stories of patient access, affordability, and quality. This will become a book that will educate students on the importance of patient perspective. Instagram Facebook Twitter

From the Editor:

Kate Pecora is a new member of the Voices of Value program here at Patients Rising. As Kate travels the country you’ll see her features HERE and on our social media. Kate Across America

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