An aspiring artist and established disability advocate, I first came across Alicia on a whim through Twitter. Her posts first signified a commitment to assisting individuals in receiving necessary caregiver services through Ohio’s Medicaid program. Meeting her in Akron opened my eyes to the hurdles those with disabilities jump through to maintain independence. 

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 is 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 Ohio and across the nation. Every 8 seconds, somebody new will need a caregiver.” 

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, especially in rural areas. Becoming a home 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 professions like nursing or skilled health aides have 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 step out of their roles. As a result, more patients needing daily assistance will have no choice but to enter a nursing home. Those who are fortunate enough to stay at home will face a lower quality of care with shorter visits and higher staff turnaround.

EVV systems look like cell phones and are even equipt with video and audio recording ability.

EVV 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 uses biometric and geotracking equipment, which fall out of the stipulations of the law. However, because these programs are contracted with the state, many patients are not able to opt out of this type of tracking without losing access to their caretakers

Though intended to cut down on Medicaid fraud and protect recipients by ensuring that proper care is being conducted at their home, these devices are a sort of monitoring system of disabled people in the privacy of their own homes, including a camera and audio recorder. This type of surveillance is discriminatory towards those that are experiencing financial hardship and disability, creating 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, as this level of surveillance has great potential for the data gathered to be misused. Not only is it impeding on the privacy of those requiring home care services, but it places an additional level of scrutiny on the home health aides that operate the system during a visit. Being a few minutes late or not being able to read proficient English on the system creates a big brother scenario and puts caregivers at risk of losing their jobs. 

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. Ensuring that state governments can provide adequate tools for patients to receive these services, could only serve to benefit elders and those with disabilities as they join in bettering their community.

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