Legal agency offers storied look at Florida’s health challenges
Mika was working and had health insurance through the Affordable Care Act, which provided a $100 a month subsidy for her premium. The coverage paid off in 2016 when she had appendicitis and it took care of her $40,000 in medical bills.
But in 2018, she was injured in a car accident and forced to stop working. To her shock, since she wasn’t working, she was no longer eligible for ACA’s marketplace subsidy and her insurance costs more than doubled.
She had to drop the coverage and because Florida is one of 12 states that has not expanded Medicaid insurance under the ACA for low-income adults, Mika was left with no way to get insurance.
“I was devastated that I wasn’t able to get help when I desperately needed it. After the car accident, I needed x-rays and physical therapy, but I didn’t make enough money to qualify for assistance,” she said. “As a result, I had to forego the medical attention I knew I needed and I worry about what that will mean in the future.
“Going from being insured to being uninsured is a life-changer and no one should go without coverage.”
— One of the stories collected by the Florida Health Justice Project.
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Problems like Mika’s led to the formation of the Florida Health Justice Project two and a half years ago to provide assistance to legal aid providers and clients in the exceptionally complex world of health care for low-income Floridians.
“There was a lack in the delivery system in Florida of health law expertise, a group that could understand how to identify and address what are the systemic issues that low-income Floridians experience in terms of securing their health rights,” said Miriam Harmatz, founder and executive director of the project.
“It was a challenge to ensure the [legal aid] field programs had support and technical assistance and a flow of information that would identify issues and be able to assist clients who were experiencing barriers,” she said. “The other big issue and one reason that health law is not practiced to a greater extent is individuals don’t know they have health-care rights.
“If you’re getting evicted, you get a notice and you know to go to your legal aid provider. Many people don’t know they may have rights in terms of access to home health care. And people who are on Medicaid don’t often know they have rights to a range of services. Children, for example, are eligible for any service that is medically necessary.”
Medicaid law is at the heart of health care for low-income clients, and Harmatz can rattle off a series of judicial commentary that basically describes the law as “unintelligible to the uninitiated.”
So the program attacks improving health-care access by having seminars and providing other materials for legal aid organizations that represent clients, participating in systemic litigation that secures health-care rights for Floridians, providing information and white papers to government officials who run and make decisions about health care, and educating Floridians about their rights.
That latter effort includes making a variety of fliers available on the Florida Health Justice Project website, and collecting stories from residents about their health-care struggles.
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Olympia and Oscar have been married more than 50 years and have spent a lifetime working after they left their native Cuba. Both in their 80s, they are each suffering various medical problems, but want to stay together in their home rather than move to a nursing home.
Oscar until recently did most of the household chores and shopping, although he has diabetes and mild dementia. He recently was diagnosed with mesothelioma. Olympia has asthma and COPD and needs an inhaler and oxygen, and also was recently diagnosed with cancer. Both are in wheelchairs. Olympia’s Medicaid long-term managed care plan provided home-health care for a few hours a day, but that is no longer sufficient.
Their son has left his job in Mexico to help his parents, but has trouble getting phone calls returned and is confused by the system. He fears his parents may be forced into a nursing home, which he feels is a poor option with COVID-19 making that a risky choice.
“Olympia and Oscar just want to be together, and live out their lives peacefully, with their pets nearby in the safety and security of their own home. After a lifetime of hard work, without enough home health care they will be unable to do so.”
— Another story collected by the Florida Health Justice Project.
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The intricacies of Medicaid are baffling because they rely on federal law and regulations, Harmatz said, and because each state participates separately, each has its own rules and regulations.
Harmatz said many people and lawyers don’t know that people like Olympia and Oscar do qualify for extensive in-home care, although it’s not easy.
“For people who meet the requirements — they have to be poor, have minimal assets, and need a nursing home level of care with details of daily living — can go right into a nursing home. That’s an entitlement,” she said. “If you want to stay at home, which many people do with COVID, there will be a long waiting list for a long-term care waiver.”
The pandemic has changed much in health care including Medicaid, with the federal government issuing new guidelines. One example, Harmatz said, is post-delivery Medicaid care for mothers.
The standard was to end coverage two-months after birth. But new COVID federal regulations, effective since March and which were accepted in Florida, extended care indefinitely. “That’s a critical protection,” she said.
The pandemic has created its own challenges, she said.
“There’s been a firehose of material from the federal government and national legal service centers since COVID was first declared a national emergency in March,” Harmatz said. That includes “what services and what operations were provided to states and what did advocates need to know.”
For example, health facilities that participate in the federal HRSA COVID-19 Uninsured Program are not supposed to charge uninsured COVID patients for their treatment, she said. The federal government also offered to pick up the costs of coronavirus testing, although Florida did not accept that.
As part of getting the word out to the public, lawyers, and decision makers, the Florida Health Justice Project collects and distributes a variety of information in flyers and research papers, all available on its website.
General information for the public spans a wide variety of health and legal issues, from Medicaid to COVID. There are also papers for lawyers, policy makers, and others exploring the complex issues.
One treatise looks at mental health, criminal justice and how Medicaid expansion would help, and a related publication looks at the overall benefits if Florida expanded its Medicaid pro-gram under the ACA. Another paper examines disparities in outcomes among COVID-19 cases throughout Florida. Still others address adding dental care to Medicare and how converting federal Medicaid funding to block grants for states could reduce coverage.
On August 5, the project released a list of free or low-cost COVID-19 testing and treatment resources along with other information about dealing with the pandemic.
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Olga endured physical and mental abuse in her marriage for years before she escaped with her daughter. They turned to a homeless shelter for refuge, and the doctor there prescribed medications for her PTSD, anxiety, and depression, which make her unable to work.
Because she has no health insurance, Olga is unable to see a psychologist for those illness-es. If she leaves the shelter, she will lose access to the medications.
“I want to move out and help things get back to normal for my daughter, but not having Medicaid is a giant obstacle,” Olga said.
If Florida, one of the last 12 holdout states, expanded its Medicaid coverage under the ACA, Olga would get treatment.
— Another story collected by the Florida Health Justice Project.
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Stories like those are collected by Blanca Mesa, a client outreach and communications consultant at the project. Both a journalist and attorney, she worked for Legal Services of Great-er Miami and as a navigator after the ACA law was passed. She does the interviewing for the personal stories posted on the project’s website.
She’s one of the small staff, some full-timers, some part-timers, at the agency.
Harmatz has been interested in health issues since she needed treatment as a child, and she wrote her senior college thesis on the failure of Congress to pass a national health insurance bill in 1974. She was former senior health law attorney for Florida Legal Services and also served as an adjunct professor on health law at Florida International University College of Law.
Deputy Executive Director Alison Yager has worked at various nonprofit and govern-mental agencies with an emphasis on helping women, children, and marginalized people. Before the project, she worked at the New York City Department of Health and Mental Hygiene.
Legal Director Katy DeBriere is a former Florida Bar Foundation Equal Justice Works fellow where she worked on health issues and she worked with the Northeast Florida Medical Le-gal Partnership.
Director of Research and Policy Matt Childers is a political scientist who helps with re-search on publicly funded health-care programs, including Medicaid, Medicare, the ACA, and the CHIP program.
Shenae Samuels-Staple, Ph.D., does research on health policy issues, especially on disparities in health care and access issues for vulnerable populations.
Law Clerk Melissa Lipnick is a third-year law student at the University of Miami with an interest in health-care disparities.
Harmatz said telling the personal stories is important for the Florida Health Justice Project’s mission.
“If you put faces on people, our hope is the public, elected officials, and decision makers will see both the human aspect of this as well as the economics for expanding Medicaid,” she said.
Although 12 states still have not joined the expanded program 10 years after the ACA was passed, Harmatz noted that the original Medicaid program dates to 1965, but it was another 17 years before every state joined the program.
In the meantime, she hopes lawyers will help Floridians fill the gap.
“People don’t know their health-care rights, disabled seniors especially, for many, many reasons,” Harmatz said. “This is the reason we’ve got to do a better job on outreach and education.”
For more information about the Florida Health Justice Project, its human stories, and flyers and research for both the public and lawyers, visit its website at: https://www.floridahealthjustice.org.