The Law Professor Who’s Fighting for Your Health Rights

At the University of Arizona James E. Rogers College of Law, a growing alliance is forming. Healthcare workers and the legal professionals who help to design and interpret regulations in the healthcare industry are joining forces to address issues with public health policy.

Leading the collaboration is Tara Sklar, professor of health law and director of the Health Law & Policy program at University of Arizona Law. Sklar sits at a unique vantage point between the two disciplines, providing her with a clear picture of how they can work together to mitigate health disparities and improve patient care for vulnerable populations.

A Lifelong Commitment

Sklar’s work is motivated by her own experience. As a young child, she dealt with a health condition that kept her in and out of the hospital for nearly two years. Through countless tests and treatments, she became acutely aware of her condition but was rarely ever directly included in her own healthcare choices.

“I can't think of a single point during that time that I was ever asked what I wanted,” recalls Sklar. “It was always ‘this is what we're going to do, and here are the side effects you can expect.’ Even speaking to me about it was almost non-existent. Instead, they would speak to the parental figure in the room, and then offer me a lollipop.” No one seemed to consider how the treatments were impacting her quality of life and development.

The experience triggered a lifelong commitment to mitigate the fear and helplessness of navigating the health system for future patients. But instead of pursuing a health professions degree, Sklar attended law school, where she looked for courses that would allow her to apply her advocacy interests to healthcare, ultimately earning both her JD and a Master of Public Health.

After graduating, Sklar worked with health systems and government entities across the country before moving into academia where she has focused her efforts on research and policy aimed at centering the patient experience in healthcare, particularly for vulnerable populations including older adults.

Changing the System

Sklar’s research examines the ways laws can hinder or help to ensure equitable access to patient-centered care with her most recent work focusing on how healthcare should adjust to meet the needs of a more diverse, aging population.

Elder and long-term care is rapidly becoming one of the most daunting challenges to the U.S. healthcare system. By 2030, 1 in 5 Americans is projected to be 65 years old and over and surveys suggest that more than 75% are looking to stay at home as they age, avoiding nursing home facilities altogether.

But in America, older people who need care in a nursing facility or at home must either be wealthy enough to pay for it themselves, have family support, or they must qualify for Medicaid. For the people who are eligible for Medicaid and wish to stay at home, over 820,000 find themselves on waiting lists. They are unable to receive the care they need leaving many with an increased risk of falls or other dangers that could force them to be institutionalized much earlier than they need to be. This is due in part to Medicaid’s institutional bias which guarantees to pay for long-term care services in an institution but makes home and community-based services optional.

Motivated by the inadequate delivery of long-term care in the U.S., Sklar, along with colleague Kathryn Huber, MD, MS, alumna of the University of Arizona College of Medicine-Tucson, resident physician at the University of Colorado and professor of practice at the College of Law, combine clinical work with regulatory changes and ethical considerations around the integration of health technology in the home, specifically for aging in place. The title of their current work, "Modernizing Medicaid Home and Community-Based Services with At-Home Diagnostics and Home Telehealth," explores ways that regulatory laws and policy around telehealth can be updated to help make this delivery system more widely accessible to help fill the gaps of home-based care.

 “Telehealth is changing how and where healthcare is delivered, creating a more responsive system to patients’ preferences,” says Sklar  who is also the Senior Faculty Advisor in Telehealth Law & Policy for the Arizona Telemedicine Program. “But as much as I see the benefit of telehealth and want to expand its availability, we can’t just pursue it because it’s a cheaper alternative to sending someone to a nursing home. There must be additional oversight to ensure quality of care as well as patient and workplace safety.”

The research advocates for rethinking Medicaid’s institutional bias for nursing homes to allow more flexible reimbursement towards home and community-based services including telehealth. In addition, it addresses the removal of certain policies that have created barriers to access telehealth services such as geographic restrictions, scope of providers, and the limited definition of telehealth which carves out audio-only services as opposed to all HIPAA-compliant telecommunications systems.

“A best-case scenario supports how telehealth and related virtual care could become a streamlined extension for home delivery innovation, especially for homebound individuals and for post-acute care, to complement in-person care as needed, not compete against it,” says Sklar.

Sklar and Huber will present their research this summer, at Harvard Law School's 2022 Petrie-Flom Center Annual Conference, and Sklar will present sections of this work to the U.S. Senate, as an invited panelist with the Center for Telehealth and e-Health Law.

Sklar is not only interested in the creation and passage of federal and state laws to improve long-term care, but also if laws currently in place are achieving their intended affects. In a sperate research study, titled “Racial Justice in Long-Term Care: Amplifying Voices of Immigrant Workers” Sklar has teamed up with fellow University of Arizona Law professor and labor law expert Shefali Milczarek-Desai to conduct a qualitative survey of long-term care workers and health aides. The field is largely dependent on immigrant, female labor, yet these workers are provided with minimal employment benefits such as paid sick leave, which has led to devastating consequences for older residents particularly during COVID-19.

Their collaboration builds on a previous co-authored paper entitled, "The Return of Typhoid Mary? Immigrant Workers in Long-Term Care." The current, second phase of their work is supported by a grant from the University of Arizona’s Hispanic Serving Institution Faculty Seed Grant program, and highlights the inextricable link between immigrant workers’ rights and care for older adults, particularly  as demand for long-term care continues to climb, yet labor supply declines. When phase two of their study is complete, Sklar and Milczarek-Desai will develop and test a series of real-world interventions that incorporates immigrant workers’ perceptions and preferences to better access and benefit workers’ rights in the long-term care industry. 

“We're interviewing these women to try and hear their perspective about what's happening in long-term care and hopefully that will influence more constructive reforms,” says Sklar. “When the federal Occupational Safety and Health Administration or another government agency comes in to try and improve workplace conditions in long-term care they won’t just be hearing from the administrators or the regulators with Health and Human Services, but also this really vulnerable population that often is very much exploited. If you want the laws to achieve their intended goals with workplace and patient safety, then these voices need to heard. Many in this population group do not know their workers’ rights and how to access them.”

At the Intersection of Law and Health

But law cannot achieve these policy changes in isolation which is why Sklar was eager to help expand University of Arizona Law’s Health Law & Policy program, which serves as a forum for collaboration between lawyers and health professionals, as well as students and professionals in many other disciplines across business, engineering, and science, who are interested in this curriculum.

“The intersections that we have built at University of Arizona law are critically important,” says Sklar. “It benefits the law students to hear from current and future health professionals, and healthcare administrators and providers are eager to better understand the laws which govern their profession.”

As part of the program, Sklar has developed graduate certificates in health law, including four certificates designed for those interested in seeking expertise in law, regulations, and ethics in healthcare. Pulling from her experience in the field, Sklar has devised over 35 courses that would be relevant to both legal and health professionals, with topics ranging from foundational knowledge in healthcare delivery and reimbursement to rapidly evolving areas in aging law & policy, health information privacy, and regulatory science where students engage with the regulatory approval process around the development, safety, and efficacy of drugs and devices.

More than 1,000 students have taken a certificate course since they launched in 2019, a testament to the growing desire for cross-discipline training in law. Fully online, the programs have also attracted individuals from all over the country, exposing students to the different ways states handle the delivery and regulation of healthcare.

“At the end of the day, all these programs are supposed to benefit the patient,” says Sklar. “The more we can bring these different silos of knowledge together the more healthcare, the patient and overall health system will benefit.”

The Future of Health Law

Like many other industries, healthcare has entered a period of rapid change. The advancement of new technologies, as well as innovative combinations of existing ones spurred on by the pandemic are fundamentally changing how we prevent, diagnose and cure diseases. Sklar sees this as a moment to reform healthcare policy along with practice, placing patient experience front and center.

“I do see some bright spots ahead with how law is enabling greater equitable access to healthcare services, including long-term care, and increased recognition of patient preferences and values,” says Sklar.

While there are formidable challenges to come, Sklar points to legislation that could allow for a more prepared, resilient healthcare system when a future pandemic occurs, and educational pathways that combine legal training are key.