Recent guidance from the Centers for Medicare & Medicaid Services (CMS) allows states to require Medicaid recipients to work in order to receive their health coverage.  If Florida were to adopt such an approach, as a growing number of states have begun to do, thousands of residents would likely lose their access to health care.1

While the premise of work requirements, that they will support the development of workplace skills and economic independence, may sound appealing, in fact, it is fundamentally flawed.  First, it assumes that Medicaid recipients are not working, when in fact, 61% of adult Medicaid enrollees in Florida work.  Nationally, of those who aren’t working, more than 80% are in school or report an illness, disability, or caregiving responsibilities that keep them from working.

Additionally, work requirements subject people to burdensome paperwork and documentation requirements, which too often lead ultimately to loss of coverage.  In other words, work requirements cause recipients who are already working, or are duly exempt from work, to lose their Medicaid because of administrative errors, and/or the system’s inflexibility (e.g. late paperwork, administrative errors, insufficient work hours in a given month, or a brief spell between jobs).  The remaining individuals, who are neither working nor ill, disabled, or caregiving, likely don’t lack motivation to work, but supports that make work possible such as child care, and access to transportation.  Further, in a state like Florida, that has not expanded Medicaid; the pool of able-bodied adults who would be subject to work requirements is quite limited, further underscoring the illogic of work requirements here.

Having health care helps people work and look for work.  Ironically, taking it away will make it more difficult for many people to keep their jobs, or find a new job.  Anticipated coverage losses that would come with work requirements will make health outcomes worse, access to care more difficult, and will make any growth in employment rates among recipients highly unlikely.  In fact, a recent study of the first ever Medicaid work requirements, implemented in Arkansas found precisely these outcomes: thousands of people lost their Medicaid while there was no significant change in employment.  Work requirements, it turns out, don’t work.

If you or someone you know is on Medicaid and want to learn more about this potential change to the Florida program, please contact us.

_______________________
1 When work requirements have been challenged in federal court, they have been twice struck down, in Arkansas and Kentucky.

Background
Florida’s Medicaid program, public health insurance for certain low-income individuals, is jointly funded by the state and federal governments.  Regardless of the program’s annual costs, federal dollars cover over 60% of the bill.  Thanks to this reliable support, the State can meet the needs of all those who are eligible.  But this could change.

The federal government is currently encouraging states to elect to “block grant” their Medicaid program.  In contrast to the current guarantee of a “federal match,” a block grant would cap the federal contribution to Florida’s Medicaid program at a fixed amount.  Beyond that cap, the state would bear all responsibility for program costs.  The Administration’s move represents a major cut to federal Medicaid spending, with planned savings of $1.5 trillion from the national Medicaid budget over ten years.  To lure states into accepting a potentially massive loss in necessary funding, the Administration is promising increased flexibility in the Medicaid program.  But this is a misleading “inducement,” as states already have significant program flexibility.  What Florida needs is not more flexibility but a reliable funding partner in the face of growing demands for health coverage.

Status and Impact
Florida’s Medicaid program currently guarantees coverage for children in low-income families and very low-income parents of minor children, pregnant women, and individuals who are blind, aged, or disabled. Over 4 million Floridians rely on Medicaid for their health care.  If Florida opts-in to capped Medicaid funds, a budget shortfall will be inevitable.  While the federal government will save money, the state’s costs will balloon.  Medicaid in Florida already has one of the country’s lowest per enrollee spending rates.  When the state decides it is unwilling or unable to take on additional costs, it will be forced to take ruthless measures: cut eligibility, reduce benefits, and/or establish waiting lists.

Florida’s residents already have serious economic challenges and health care needs that underscore the potential negative impact of a Medicaid block grant.  For example, Florida is home to over 800,000 children living in families below the federal poverty level, has the second largest waiting list in the country for severely disabled residents requiring home and community based services in order to avoid institutionalization, and is tied for first among the states for the highest portion of senior residents.  The state has one of the nation’s highest rates of HIV infection and a high rate of drug overdose mortality, and will be among the first in the nation to experience the wide-scale health impacts of climate change.

Capping federal health coverage funds will mean that many of these people, and likely those with the most expensive care needs, will find themselves without coverage for the care they require.  A Medicaid shortfall would also threaten the state’s ability to cover high-cost prescription drugs, to address a public health emergency like the opioid epidemic or Zika, or to meet the needs of Floridians in an economic downturn.  In short, a Medicaid block grant would spell disaster for the health of state residents and the viability of the providers who serve them.

Next Steps

• It is important to educate stakeholders and Florida legislators about the long-term impact of block granting Medicaid in Florida. They need to ask and answer these questions:  
  How would a block grant impact the children/people with disabilities who rely on Medicaid?  How would it affect access to mental health and substance use services?  How would it impact community providers that depend on Medicaid payments?
• Florida decision-makers need to see not just data and budgets, but the faces and the stories of individuals and families who rely on Medicaid.  We are collecting stories of those who would be most impacted in order to educate about the risks of a Medicaid block grant.  If you or a loved one depend on Medicaid, and you worry about how a block grant might endanger the care and services you receive, please be in touch.
  

Background on Retroactive Medicaid Eligibility (RME):

Under the federal Medicaid statute, states must provide up to three months of retroactive coverage to a successful Medicaid applicant if the individual was eligible for coverage when services were provided during those three months prior to application.1 This important consumer protection provision is referred to as “Retroactive Medicaid eligibility (RME).” Consistent with the Medicaid program’s objective to protect low-income persons who otherwise cannot afford needed health-care, Congress passed RME to alleviate financial risk for vulnerable individuals and ensure that those without insurance had an easier path to medical care.

In 2018, Florida received approval from the federal government to “waive” the RME section of the Medicaid statute for non-pregnant adults over 21 and to limit coverage to one month. This was done pursuant to what is referred to as an “1115 waiver” request.2 Because these waivers are time limited, the 2019 Florida Legislature attempted to permanently eliminate RME through a statutory amendment.3 Although the amendment ultimately failed to pass during the 2019 legislative session, Florida continues to utilize the section 1115 waiver to cut funding and limit access to RME.4

Status and Impact: Example of how the RME elimination impacts people and providers:

This elimination of RME is hurting low-income frail and disabled Floridians and critical safety net health care providers. Consider this hypothetical example: On March 15th, “Joe” suffered a sudden heart attack and was rushed to the hospital by ambulance.  He was admitted, treated for four days, and sent home. Joe, who is 64 and uninsured, was already suffering from dementia. Since his heart attack, Joe’s dementia has gotten much worse, and his wife, Dora, cannot care for him at home. She calls a nearby nursing home and is told he needed to first apply for Medicaid and be found eligible before he could be admitted. She does not know how to use a computer and is unable to get through on the phone to a local agency for help in filing a Medicaid application. Meanwhile, Joe falls and is taken by ambulance to the hospital on April 15th. He is discharged after receiving a CAT scan and spending the night in the emergency room. Joe’s son, who is in the army and stationed overseas, finally files an application for Medicaid for Joe online on May 1st. Joe is found eligible on June 5th. Joe’s medical bills from May and June will be covered.  However, his hospital bills from March and April totaling $35,000 are not covered by Medicaid. Under RME, those bills would have been covered, and it is also more likely that he could have gone straight to a nursing home.

Next steps:

Until RME is restored, a number of low-income, uninsured Floridians like “Joe” and his family will suffer. It is important for the public and policy makers to hear directly from those who are impacted. If you, a friend, or a loved one have been hurt by the loss of RME, we want to hear from you and work with you on the Florida Health Justice STORIES initiative.

Contact:
Miriam Harmatz, J.D., Co-Director
Florida Health Justice Project
harmatz@floridahealthjustice.org
Office: (786) 558-4950
Cell: (786) 853-9385 
 
 
(MIAMI) – Government-subsidized health-care benefits are critical for low-income Florida seniors – particularly those who are frail and disabled – but they can be hard to come by, which is why attorneys at the nonprofit Florida Health Justice Project (FHJP)and Legal Services of Greater Miami Inc. have published a guide for those advocates engaged in helping seniors access long-term care and related services under Florida Medicaid.
 
The Advocate's Guide to the Florida Long Term Care Medicaid Waiver, made available online thanks to the Florida Justice Technology Center (FJTC), concerns long-term services and supports that are essential to remaining at home or in the community rather than in a nursing home.
 
“For Florida seniors who want to stay out of a nursing home after they can no longer handle the routines of daily living, these services are critical, but like many Medicaid services, navigating the system is complicated,” said Miriam Harmatz, co-director of the Florida Health Justice Project, a new nonprofit advocacy organization. Earlier this year, the project prepared The Advocate’s Guide to the Florida Medicaid Program.

“These guides exemplify our mission and work,” Harmatz said. “Through collaboration with local legal services programs, FJTC and national partners, including Justice in Aging, we’re providing valuable resources for Florida’s legal aid and pro bono advocates who are helping clients get medically necessary services.” This is the second such collaboration between FHJP and FJTC.
 
As with The Advocate’s Guide to the Florida Medicaid Program, FJTC took the lead on dissemination by turning both guides into online, interactive versions.

“The advocate community plays such an important role in expanding access to justice, because they’re typically the ones advising and assisting those in need,” FJTC Project Manager Joseph Schieffer said. “We wanted to create something that would amplify their work and streamline the process to find information. Having the guide online makes it easier for advocates to navigate the content and share it with others.”
 
Long-term care – including both nursing home and community-based care – are both part of Florida Medicaid’s Long-Term Care Program. The new guide, however, focuses exclusively on the part of the program for those living at home or in the community, which falls under Florida Medicaid’s long-term care “waiver.” Under federal law, waivers allow states to provide home and community support services to a set number of people as an alternative to institutional care.
 
Also known as “home and community-based services,” the covered services are not typically available through Medicare or standard medical insurance, such as personal-care aides and private-duty nursing.
 
Nationwide, over half of people turning 65 will at some point develop a severe disability or medical condition that will require home and community-based services. Over 100,000 Floridians currently receive services through Florida Medicaid’s long-term care waiver, with over 50,000 on a waiting list.


The guide provides advocates with an overview of the authority governing Florida's Medicaid managed care long-term care waiver and a roadmap addressing basic questions including:

• who is eligible for the long-term care waiver
• how to apply
• what to do if an application is denied or delayed
• how the wait list works
• what to do if eligibility is terminated
• what services are covered and how the “care plan” is developed
• how managed care works
• what to do if services are denied, delayed, terminated or reduced

 
Jocelyn Armand, Legal Services of Greater Miami advocacy director, co-authored the guide with Harmatz, Katy DeBriere, co-director of the Florida Health Justice Project, and Michelle Adams, research assistant.

"The Advocate’s Guide is a much-needed resource for advocates and consumers alike. The guide’s road map helps navigate one of the most complex parts of the Medicaid program. We are extremely appreciative to the Florida Health Justice Project for the opportunity to collaborate on this crucial endeavor,” Armand said.

Anne Swerlick, health policy analyst with the Florida Policy Institute, endorsed the guide.
“This guide is an invaluable tool for Florida advocates seeking to ensure that consumer protection policies are implemented to protect Florida’s frailest residents,” Swerlick said.

Pro bono technical support for the guide also came from other groups, including Justice in Aging, a national organization that uses the power of law to fight senior poverty by securing access to affordable health care, economic security, and the courts for older adults with limited resources.

About the Florida Health Justice Project

A new nonprofit advocacy organization, the Florida Health Justice Project seeks to improve access to affordable health care for Floridians, with a focus on vulnerable low-income populations. FHJP expands the advocacy community’s capacity to resolve individual access issues and educate consumers; identify and address systemic barriers to healthcare; and protect Medicaid and other safety-net programs.

In past years, the Florida Legislature debated Medicaid expansion, the Senate passed expansion bills twice, and the state’s press corps-- given that they had something to “cover”—did a tremendous public service in helping Floridians better understand the costs and benefits of decreasing the state’s rate of uninsured. But for the last few years, health care policy debates have ignored Medicaid expansion and, instead, focused on different issues, including this year’s debate over whether hospital rates for safety net providers should be “enhanced.”  Because respected Senate leaders, even within the same party, have opposing positions, it’s hard for stakeholders to understand which side to champion.  Consumer advocates support critical safety net providers.  But can they be supported through enhanced rates? What does that even mean?? 

​Understanding hospital funding, is not for the feint of heart—particularly in Florida.  Years of state cuts to the Medicaid program, including cuts to safety net hospitals, led to a confusing and arcane system of hospital funding.  Adding to the confusion is that separate funding formulas for different hospitals exist within the state’s managed care system (referred to as “LIP” payments) as opposed to the specific rates that each hospital is assigned for the relatively few patients who are still in “fee-for-service” rather than managed care (referred to as “rate enhancements”). 
 
In a nutshell, the Low Income Pool Program (LIP) provides a mechanism by which supplemental payments—separate and apart from regular managed care reimbursement rates—can be made to providers who treat a large percentage of uninsured patients.   The state match for the LIP program comes through local funding sources, known as intergovernmental transfers, or IGTs, rather than general revenue; most LIP funding goes to safety nets and it is a defined amount.  By contrast, a hospital’s “rate enhancements” represent a projection based on the rates paid by the State for patients in the fee-for-service system. Thus, under a managed care system, a hospital’s rate enhancement distribution can only be projected since it depends on 2 variables:1) the extent to which managed care company contracts with that individual hospital mirror the hospital’s “enhanced rate” agreed to by the State;  and 2) the extent to which a given number of the managed care organization’s enrollees actually receive “enhanced rate” services at that hospital.
 
As a health care consumer advocate, I’ve spent significant time unpacking and explaining hospital funding so that stakeholders could better understand how the debates over hospital funding fit within the larger health care debate. Notwithstanding these by these efforts, I’m not sure I understand these issues well enough to “take a side” in the current Senate debate.  But I do understand enough to note that the current debate isn’t raising the rights questions.
 
If we can agree that the goal of health care policy should be lowering costs and improving outcomes, two questions should be answered: 1) how can we get more people covered; 2) how can we ensure that coverage dollars are used to improve outcomes?   The first question is easy. Unless/until most people are covered, the health care system as a whole (it is ultimately one system), will never be able to effectively control costs and improve outcomes. Because over half a million low income Floridians don’t have access to employer based coverage or coverage in the marketplace, the answer to the first question is simple:  accept federal funding to pay for their care under the state’s Medicaid managed care program. 
 
Answering the second question is much harder. But because Florida requires that virtually all Medicaid recipients receive their health care services through a managed care organization (MCO), we can begin. First, MCOs must receive a sufficient amount of funding in order to ensure that medically necessary services are adequately available to their enrollees.  Because the federal government will reimburse Florida for roughly 60% of the MCO’s costs (for Medicaid expansion enrollees the federal government would pay 90%), Florida has to come up with a sufficient 40% “state match.”  If we do that, theoretically at least, the MCO rates paid to providers will be high enough to ensure adequate provider networks for enrollees —from hospitals to doctors to therapists to midwives. Second, the state Medicaid agency must have sufficient funding to adequately monitor timely access to all medically necessary services. 
 
But back to the safety net hospitals that treat a “disproportionate” number of patients on Medicaid. These patients are, by definition, low–income.  It is undisputed that poverty and poor health go hand in hand and that it costs more for providers to treat patients who present in poor health. Additionally, Florida’s safety nets treat a large number of immigrants who are living and working here but who are not eligible for health coverage, even under Medicaid and the ACA.  In short, Florida’s safety nets are critical and need to be supported.  What is less clear is whether we do that through enhanced hospital rates.
 
Moreover, improving the health outcomes of low income Floridians means doing a lot more than increasing safety net reimbursement rates. As Maggie Kuhn observed, “the war on poverty has never been more than a skirmish,” and immigration debate in America may be even more contentious than the health care debate. But if Florida can at least address the first question and finally accept federal dollars to cover half a million uninsured Floridians -- we will free up some of the local IGT dollars now used to help safety nets cover the cost of treating the uninsured. Imagine the potential for improved health outcomes if, for example, some of those local tax dollars were freed up for more affordable housing and healthy food gardens?  

​By Miriam Harmatz, Co-Executive Director of the Florida Health Justice Project

A new Florida Policy Institute (FPI) report projects net state budget savings of a half billion dollars if Florida expands its Medicaid program. Under the Affordable Care Act, the state can tap into billions of new federal Medicaid dollars if it opts to cover more than 500,000 low-income uninsured Floridians.

Based on the experiences of other states and FPI’s analysis of FY 2016-17 data, the potential savings and increased revenues far exceed the additional costs that would accompany Medicaid expansion.

Savings and increased revenue would be generated through:

• Enhanced federal matching dollars to continue coverage for the medically needy, adults with disabilities, pregnant women and women with breast and cervical cancer. Currently, the federal government pays 61 percent of every state dollar spent on care for these groups. With Medicaid expansion, the federal match would increase to 90 percent.
  

• Replacing millions in state General Revenue funds with federal Medicaid dollars to support mental health and substance abuse treatment programs, hospital inpatient costs for prisoners and uncompensated care programs.

• Revenue gains from provider assessments.
  

Medicaid expansion provides Florida policymakers an unprecedented opportunity to free up state resources that can be used to meet the pressing needs of our families, communities and economy. These include education, workforce training, affordable housing, roads and building sustainability into our coastal communities.

For two years Vickie Goldstein filed appeals and wrote letters trying to get Florida’s Medicaid program to pay for a drug with the potential to cure her of the viral infection that was slowly destroying her liver.

For two years she got the same answer: You have to get sicker first.

“I talked to a couple of attorneys who specialized in insurance law, and they all said to me, ‘We can’t make any money suing the government,’ so they didn’t want any part of it,” said Goldstein, who at 57 had been living with hepatitis C for more than a decade.

Finally, in December 2015, her Internet search hit upon Florida Legal Services Inc. staff attorney Miriam Harmatz, a health law expert whose work is supported by The Florida Bar Foundation.

“I stumbled onto Miriam. She was the only one I saw who represented poor people and not hospitals and doctors,” said Goldstein, a resident of Delray Beach.

As it turned out, Harmatz would not be alone in representing Goldstein. She quickly brought in Vicki Tucci Krusel, managing attorney of the Coverage to Care Legal Initiative of the Legal Aid Society of Palm Beach County, as well as Abbi Coursolle of the National Health Law Program (NHeLP).

“They were the most amazing group of women that I have ever met,” Goldstein said. “I mean they just went right into action mode.”

At the time, Goldstein had already lost her appeals through her Medicaid managed care company and was about a month away from a fair hearing with the Florida Division of Administrative Hearings. She handed over to her legal team reams of documentation, along with research she’d done to support her case.

“She’s such a strong and brave woman, but at the same time she was very physically broken, emotionally broken from this fight in trying to really save her own life,” Krusel said.

Goldstein’s coverage denials were based on a policy of the Florida Agency for Health Care Administration (AHCA) and its contracted Medicaid managed care companies. The policy required that a patient’s liver fibrosis, or scarring, be at least a three on a four-point scale, with stage four liver disease being so severe that patients often need a liver transplant. Goldstein was not yet stage three, but her health was compromised. She had no appetite, weighed about 100 pounds, and her brain was foggy all the time.

Dr. Michael Fried, director of hepatology at the University of North Carolina at Chapel Hill, said delaying
therapy until a patient has progressed to advanced fibrosis places that person at risk for liver cancer and other complications of cirrhosis.

“The best management is to treat patients in early stages of disease, prior to the development of scarring,” Fried said.

Goldstein’s attorneys knew they needed to get results quickly for Goldstein, but Goldstein wanted to do more.

“We wanted Vickie to get her medicine as soon as possible, because she was quite ill, but she was also very clear that she wanted to help other people,” Harmatz said. “One of the joys of our work is when we’re working with a client who sees the opportunity to not just help themselves but to help other similarly situated people, and she really wanted to do something systemically.”

A systemic approach was important since hepatitis C is the nation’s leading blood-borne infection, affecting about 3.5 million Americans and killing nearly 20,000 every year.

For that reason, Coursolle had been following Medicaid coverage of drugs offering a cure ever since they came on the market in 2013. The drugs, called direct-acting antivirals, are close to 95 percent effective. They are also expensive. Viekira Pak, the drug Goldstein had been prescribed by her doctor, cost up to $31,000 a month at the time, and the course of treatment was three months.

Early on NHeLP had advocated with the Centers for Medicare & Medicaid Services (CMS), the federal agency that oversees the Medicaid program, asking them to inform states that they had to make direct-acting antivirals more widely available, in accordance with medical guidelines. In 2015, CMS did just that.

“At that point, once we saw certain states that were either very slow to implement the guidance from CMS or completely refusing, we felt like a litigation strategy could be appropriate to enforce the law in states that were still not making treatment available,” Coursolle said.

Rather than immediately filing suit in federal court, however, Goldstein’s legal team opted initially to conduct discovery at the administrative hearing level. Based on what they learned, they sent AHCA a demand letter, putting the agency on notice that it was in violation of the federal Medicaid Act. The letter demanded that AHCA change its policy and gave a realistic deadline.

The legal aid attorneys were pleasantly surprised with the response.

As of June 1, AHCA no longer requires evidence of advanced liver fibrosis for patients to receive curative hepatitis C treatment.

“Once they took the time to engage with us it was clear that the staff at the state really understood the issue and were willing to work with us to try to do the right thing,” Coursolle said.

Having completed her treatment in September, Goldstein is starting to feel better, and the virus is no longer detectable in her blood. She now knows she’ll be able to go on caring for her aging parents. And she’s looking forward to having more energy for pickleball, a sport somewhat like badminton or tennis that’s her main social outlet.

She also wants to continue doing what she can to help those denied their medications for other conditions.

“It was so wrong. The whole thing was so wrong,” she said. “If I had breast cancer would they wait until I had stage four cancer until I got treated? I don’t think so.”

Fried, whose research has contributed to the development of direct-acting antivirals, had advised Goldstein’s legal team on the health consequences of delaying treatment.

“The policy about waiting until people get advanced fibrosis was groundless, and it was solely based on
financial considerations. There was no medical reason why you would wait for people to get worse,” he said. “The other complications are way more costly than a one-time course of treatment. But payers are looking at the annual budget. They’re not necessarily looking at what happens 10 years from now.”

What sets direct-acting antivirals apart from other treatments, he said, is that they can cure a patient in a relatively short period of time, as opposed to medications patients have to take for life.

“Because the medicines are so effective, they are really very cost-effective,” he said.

In fact, it’s conceivable that in the not-too-distant future the cost to society of treating hepatitis C could be drastically reduced. That’s because with the arrival of direct-acting antivirals, the Centers for Disease Control and Prevention, the Institute of Medicine and other groups are working on a national strategy for eradicating hepatitis B and C. The cost of treatment, meanwhile, has fallen by as much as 50 percent thanks to negotiated rebates and competition.

In spite of the long-term benefits, a 2016 study reported in the journal Viral Hepatitis found that at least 30 percent of Medicaid beneficiaries with hepatitis C who request a new breakthrough drug are denied access to treatment.

But thanks in large part to legal advocacy, that’s changing.

Fried said Medicaid programs and other payers around the country, including Blue Cross Blue Shield of North Carolina and the state’s Medicaid program, are following the lead of states like Florida and eliminating barriers to treatment.

“We’re starting to see some loosening of many restrictions,” he said. “You can attribute that to the success of these kinds of cases.”

Much has been written—from blogs to briefs—documenting the tremendous positive impacts of Medicaid expansion. Less well-documented are the negative impacts that flow from rejecting expansion. Obviously, non-expansion states fail to reap the profound benefits of expansion. But they are not just failing to move forward with the expansion’s huge financial boom to health care providers and improved individual and population health. Instead, they are moving backward. The “health “ of both providers and the uninsured in non-expansion states is going from bad to worse as scheduled cuts to local safety net hospitals have begun to take effect.

Living in a non-expansion state like Florida is like watching a slow motion train wreck in your own neighborhood. As with any major local disaster, responsible county leaders should understand the causes and consequences, and this particular disaster requires a basic grasp of Medicaid hospital financing. Unfortunately, this topic is mind-bogglingly complex. It involves an alphabet soup of programs—LIP, DSH, RE, RA, IGT—and is currently understood by only a tiny handful of officials, industry insiders and policy wonks. In an effort to educate more key stakeholders, my office recently released the first of three county specific briefs explaining the implications of local safety net funding reductions and structural changes. We hope this resource will enable local leaders to both understand and address county specific funding issues and re-engage their community leaders and policy makers in dealing with the cost of treating uninsured residents.

But rather than use this guest blog opportunity to dive into arcane Medicaid financing stream issues related safety net hospitals in non-expansion states with a managed care system and an uncompensated care pool program within an 1115 waiver, I’d like to put a human face on one casualty of this train wreck. In mid January, I received a call from Senator Nelson’s office requesting assistance on behalf of a low-income constituent in Miami. The family of Maria Huaman, a mother with 3 young children, was desperately trying to get her transferred to Miami’s public safety-net hospital. Maria needed a lung transplant in order to survive. According to the family, the county hospital, which is the only local transplant center, allegedly refused to admit her for an evaluation because she did not have insurance and could not pay the requested large deposit. Maria had recently been enrolled in a market place plan, but the coverage was not effective until February.

As a long time Miami legal services lawyer, I knew that the county’s public hospital had a charity care program and that under the program’s eligibility requirements, Maria was entitled to free or reduced cost care without a preadmission deposit. I immediately emailed the hospital officials citing the relevant standards and “demanding” her admission for evaluation. But by that time it was too late. Maria died the next morning. The Miami Herald covered her family’s struggle with the hospital in a front-page story.

While the story focused on the hospital’s alleged refusal to accept Maria’s transfer without a $350,000 deposit, the reporter also included factual context and background relevant to the safety net’s failure, i.e. the Florida legislature turning down federal money to provide coverage for single, childless adults as well as low-income parents like Maria. The head of the hospital’s transplant unit, Dr. Ernesto Pretto, Jr., wrote an op-ed calling out for the need to “highlight the impact that the failure to expand Medicaid under Obamacare is having on thousands of sick and uninsured in Florida.” According to Dr.Pretto, “this is but one of many tragic stories that could have been prevented had the governor and the Florida Legislature agreed to accept federal funds to expand its Medicaid program to include low wage earners, such as the [Maria[Huaman] Marquezes.”

When Florida leaders ultimately reengage with this issue, they should not be allowed to shift blame to the federal government as they did in 2015 when Gov. Scott sued CMS over continuation of the state’s Low income Pool (LIP) waiver. Leaders should not forget the numerous problems with LIP, including the fact that there was never remotely enough funding to cover the cost of treating the uninsured (even at the height of LIP), and that it was often difficult or impossible for low-income residents to access a hospital’s charity care program.

In sum, CMS has articulated reasoned and responsible principles for reviewing any state waiver requests, including the indisputable principle that coverage is a much better use of public funds than uncompensated care pools such as the LIP. But regrettably, tragedies like Maria’s will likely continue and increase in non-expansion states because the funding for safety nets is being legitimately reduced and not replaced with expansion funding.

K.G. seemed like a typical baby. He was happy, eating well, and communicating with his parents. But some months after his first birthday, everything began to change. By the time he was 2, he was barely communicating and was eventually diagnosed with autism. When we met K.G. at 5 years old, he could not speak at all, and, to the extent he interacted with others, he was kicking, biting, or hitting them. His mother had scars up and down her arms from his biting and scratching, and she spent her days (and nights) trying to stop him from hurting himself. His doctor prescribed a therapy known as applied behavior analysis, but children who relied on Medicaid, such as K.G., had no hope of receiving such therapy. When we filed K.G. v. Dudek in 2010, Florida’s Medicaid program (like that of virtually all other states at the time) did not cover any behavioral treatment for children with autism. Two significant events, however, helped lay the foundation for challenging Florida’s exclusionary policy. First, the 2008 Florida state legislature mandated coverage of applied behavior analysis by commercial insurance. Second, shortly thereafter, Ohio advocates won a tremendous victory when the Sixth Circuit upheld a preliminary injunction enjoining the state from terminating such coverage.

Our goal in this case was to ensure that applied behavior analysis became a Medicaid-covered treatment for eligible children with autism in Florida. Success required both prohibitory and affirmative injunctive relief: an order deleting the state rule that excluded Medicaid coverage of any behavioral treatment for autism and an order that applied behavior analysis be included in the state rule as a covered treatment. After our plaintiffs prevailed, the federal agency responsible for administering the Medicaid program (the Centers for Medicare and Medicaid Services) issued an amended regulation and new guidance that should render the need for Medicaid litigation for applied behavior analysis in other states unnecessary. Nonetheless, K.G.’s story is worth sharing because some of the challenges, issues, practice tips, and pitfalls are relevant in other health care advocacy—particularly regarding “evidence-based medicine” disputes and individual plaintiffs seeking systemic relief.


Prelitigation Discovery and Settlement Efforts

Before considering litigation, we filed extensive public-records requests with the state Medicaid agency for documents identifying potential avenues by which low-income children in Florida might access applied behavior analysis. The records confirmed that Medicaid-enrolled children with autism could not receive applied behavior analysis unless they were in the state’s home and community-based developmental disabilities waiver program. But, unlike regular Medicaid, waivers have a capped enrollment, and Florida’s waiver had a waiting list of 20,000. Given the recently mandated coverage of applied behavior analysis by commercial insurance, the door to such coverage opened by the Sixth Circuit, and our clients’ desperate need for the treatment, we contacted state Medicaid officials to amend their exclusionary rule and cover medically necessary applied behavior analysis for children with autism.


District Court Litigation

When the state failed to respond, we identified experts and filed a complaint alleging that the state’s rule violated the federal Medicaid Act. At the same time we filed a preliminary injunction motion for K.G., the oldest of the three plaintiffs and the most severely disabled. After a year of intensive litigation, we prevailed at a four-day bench trial.

Legal Claims. First, we claimed that the state’s refusal to cover prescribed applied behavior analysis violated the Medicaid Act’s Early and Periodic Screening, Diagnosis, and Treatment requirements. Under these requirements, which pertain to Medicaid beneficiaries under 21, states must cover any service that fits within one of the general categories of medical services enumerated in the Medicaid Act when correcting or ameliorating a child’s condition is necessary. Because the Medicaid Act lists no category for “behavioral services,” we argued that applied behavior analysis could be covered as a “rehabilitative service,” which requires, inter alia, that a physician or other licensed practitioner recommend the service “for the maximum reduction of physical or mental disability, and restoration of an individual to the best possible functional level.”

Proving that applied behavior analysis met the definition of a rehabilitative service under the Medicaid Act was a risky challenge. That the treatment would reduce a child’s disability (the first prong of the critical clause) was never in dispute. Rather, proving the second prong of the clause—restoring the child “to the best possible functional level”—posed the risk. This prong had never been definitively addressed in a reported Medicaid case. Parents’ League for Effective Autism Services v. Jones-Kelley settled after the preliminary injunction was upheld. And the Sixth Circuit’s opinion upholding the preliminary injunction in that case, while representing a tremendous victory, was vulnerable to a statutory-construction challenge because the opinion effectively treated as disjunctive, rather than conjunctive, the “and” between the two prongs requiring that the service both reduce and restore.

Second, we claimed that Florida’s policy violated the Medicaid Act’s “comparability” requirement, which essentially prohibits states from discriminating on the basis of a person’s diagnosis. In this case, Florida was discriminating against children with autism. While children with other mental and behavioral health diagnoses could get coverage for their prescribed treatments, children with autism could not.
The State’s Unexpected Defense. Because K.G.’s condition was very severe, we sought a preliminary injunction for the state to be ordered to cover his prescribed applied behavior analysis right away. The court did issue the injunction, but that was only the beginning.
From the start, we expected that the Medicaid agency would attack the Parents’ League for Effective Autism Services decision and argue that applied behavior analysis was not a “rehabilitative service,” and it definitely did so. What we had not expected was the agency’s argument that applied behavior analysis is “experimental.” As noted, coverage of applied behavior analysis was mandated by the Florida legislature for commercial insurance and was covered under the state’s developmental disabilities waiver, which similarly excludes “experimental” treatments.

By virtue of the state’s unforeseen defense, we learned a great deal about what is and is not “experimental” under Medicaid case law, what constitutes a “reasonable” determination of “experimental,” and the critical import of this evolving issue in case law and public policy. While the Medicaid statute and regulations contain no definition of “experimental,” controlling circuit precedent in Rush v. Parham established the following standard: if a treatment is considered proven and effective by the medical community, it is not experimental. If, however, the treatment is new or lacks consensus in the medical community, the treatment must still be covered; it is then incumbent on the beneficiary to give evidence of safety and efficacy to demonstrate that the treatment is not experimental.

Under the controlling legal standard set forth in Rush, applied behavior analysis is not experimental; in the undisputed consensus of the medical community, it is an effective treatment for autism. Indeed, under Rush, one never even gets to the second prong of the inquiry, that is, needing to give evidence of safety and efficacy. Rush, however, was decided in 1980, before the prominence of “evidence-based medicine,” which requires that the treatment be supported by literature from peer-reviewed journals demonstrating efficacy. It was decided before the emergence (in the insurance industry, if not yet in the governing case law) of the so-called gold standard for proof of efficacy—large-scale randomized, double-blinded, controlled trials. Accordingly, notwithstanding Rush’s unequivocal support that applied behavior analysis is not experimental, we introduced a “plethora” of evidence supporting the treatment’s efficacy and demonstrated that the state had not applied a reasonable standard in determining that it was experimental.

The Medicaid agency insisted that applied behavior analysis was experimental because the evidence demonstrating the treatment’s efficacy did not meet the “gold standard.” Throughout most of the trial court proceedings, including the briefing on cross motions for summary judgment, the agency relied solely on reports that critiqued the strength and size of studies supporting the efficacy of applied behavior analysis. The agency was unable to locate an expert who would support its position that applied behavior analysis was experimental. Our favorite exhibit was an email forwarded to our rebuttal expert, Dr. Jon Bailey, by one of his former graduate students. The email, which originated from the state Medicaid general counsel’s office, stated outright that the agency could not find an expert to testify on its behalf. It felt like Christmas had come early.

Then, at the eleventh hour—months after the end of an extended expert discovery period and the conclusion of summary judgment briefing and only three weeks before the scheduled trial date—the state’s SOS was answered. Its lawyers suddenly declared that they had identified two experts and moved for leave to use their deposition testimony at trial. The court simultaneously granted the state’s motion and denied our motion for summary judgment. Whether applied behavior analysis was experimental had now become a disputed material fact.

Courtroom Drama. The fundamental factual dispute at trial was whether applied behavior analysis was experimental. Under the still good, albeit old, Rush case, the first inquiry is whether there is consensus in the medical community that the treatment is proven and effective, and on that issue there could be no doubt. We prepared an exhibit of consensus reports from the relevant medical entities supporting the efficacy of applied behavior analysis as a treatment for autism. It included reports from the Centers for Medicare and Medicaid Services, the surgeon general, the Centers for Disease Control and Prevention, the National Institute of Child Health and Human Development, the National Institute of Mental Health, and the American Academy of Pediatrics. Introducing the exhibit was our expert, Dr. James Mulick. Within the first five minutes of direct examination describing highlights in his 47-page curriculum vitae, there was no doubt that one of the world’s foremost experts in the treatment of autism was sitting in the witness chair.

After introducing the consensus exhibit and describing the overwhelming evidence supporting the efficacy of applied behavior analysis, Dr. Mulick poignantly described what autism treatment consisted of in the 1970s. Tragically, at that time, autism was considered untreatable. Children and adults with autism were routinely institutionalized where they were subject to segregation, sterilization, sedation, and restraints. He described how the emergence of applied behavior analysis revolutionized the treatment and prognosis of autism and resulted in significant public savings. According to studies described by Dr. Mulick, applied behavior analysis increases the likelihood that a child with autism will finish school and find employment rather than being institutionalized at taxpayer expense.

But the state still attacked evidence supporting applied behavior analysis as purportedly weak. Its attorneys relied primarily on a report by a for-profit health technology assessment entity whose services include proprietary reports that grade evidence supporting a treatment’s efficacy on a scale from A to D. It graded the evidence demonstrating the efficacy of applied behavior analysis as a “C” because of the lack of large-scale trials as required by the “gold standard” and critiqued the strength of studies supporting applied behavior analysis because the studies had few participants and were neither blinded nor controlled.

After the state’s experts opined on video that a Medicaid agency’s reliance on such reports was “reasonable,” our rebuttal expert, Dr. Jon Bailey, thoroughly dismantled that premise. In response to questions on direct and cross examination and from the judge herself, Dr. Bailey carefully explained why testing the efficacy of behavioral treatments such as applied behavior analysis simply could not be done through the “gold standard’s” large-scale blinded trials. Moreover, according to Dr. Bailey, the reports relied on by the state inappropriately excluded a large number of well-conducted “small-number” studies, including meta-analyses, which demonstrated the significant positive effect of applied behavior analysis on children with autism.

We were fortunate that the plaintiffs’ treating pediatric neurologists—Dr. Roberto Lopez Alberola and Dr. Elza Vasconcellos—happened to be the two foremost autism experts in Miami. They had each treated thousands of children with autism. And because applied behavior analysis had now been covered by commercial insurance for several years, they were able to describe the disparity in prognoses and outcomes between their patients with private insurance and those with Medicaid.

Dr. Lopez Alberola, chief of child neurology at the University of Miami School of Medicine, was an unflappable witness. He listened intently to each question and responded in a calm, measured manner. He testified that applied behavior analysis essentially restored the “building blocks” that had gone awry with autism and explained how this restoration returned the child to the developmental curve. While his style was unemotional, there was undeniable drama when the doctor offered his own judgment that giving the treatment to children with commercial insurance while denying it to those who relied on Medicaid was discriminatory. By contrast, Dr. Vasconcellos, director of the Autism Clinic at Miami Children’s Hospital, looked directly at the judge and, with her voice cracking, described how painful it was for her as a mother and doctor to have to tell parents who were already devastated by their child’s autism diagnosis that the treatment that could most help was not covered by Medicaid. She talked about how badly she felt for these parents. She knew they had very little money and could not afford applied behavior analysis, but she had to tell them about the treatment and write a prescription because she felt it would be malpractice not to do so.

K.G.’s therapist, a young, articulate behavior analyst, testified next. By the time of trial, K.G. had received only four weeks of therapy. But even in that short time, his improvement was profound. When he began applied behavior analysis, his behavior was out of control. He was kicking, hitting, throwing objects, banging his head against the wall, biting and scratching himself and others, and screaming incessantly. Using charts and graphs, the therapist showed the court the dramatic reduction in K.G.’s aggressive behavior.

Finally K.G.’s mother took the stand. In her soft-spoken Spanish, she told the court how applied behavior analysis was changing her son’s life and what their life was like before treatment. She shared the constant fear over what would happen to her son without treatment—especially after she was gone. She was afraid he would hurt himself or someone else; she was afraid that he would end up in an institution or jail. She rolled up her sleeves and showed the judge the scars on her arms from his biting and scratching. With tears streaming down her face, she testified that she felt applied behavior analysis was restoring her child to her, saying, “A light had been shut off in my son, and now it was being turned back on.”

At the end of the four-day trial, Judge Joan A. Lenard ruled from the bench:

The decision in this case cries out for immediate ruling.... I’ve sat on the federal bench for 16 years [and] this case, if not the most important, is one of the most important cases that I have ever heard.… Plaintiffs have established through their expert witnesses that there exists in the scientific and medical peer-reviewed literature a plethora of meta-analyses studies and articles that clearly establish Applied Behavior Analysis as an effective and significant treatment to prevent disability and restore children to their best possible functional level and restore their developmental skill.... We are now in 2012. How many children were lost?... The Medicaid population of children diagnosed with autism and/or autism spectrum disorder are deserving and will be given Applied Behavior Analysis treatment in the State of Florida.

Judge Lenard’s words, spoken late on a Friday afternoon, left everyone in the courtroom (with the exception of the judge herself and defense counsel) in tears.

On the following Monday morning, the court entered a permanent injunction order ensuring that applied behavior analysis would immediately be available as a covered Medicaid benefit. The injunction required the Medicaid agency to delete the exclusion of any behavioral treatment for autism, to inform providers that applied behavior analysis was now a covered Medicaid service for children diagnosed with autism, and to supply authorization codes so that providers could bill for the service. The district court further ordered the Medicaid agency to

• “provide, fund, and authorize Applied Behavioral Analysis treatment to Plaintiffs … as well as to all Medicaid-eligible persons under the age of 21 in Florida who have been diagnosed with autism or Autism Spectrum Disorder, as prescribed by a physician or other licensed practitioner,” and
• “take whatever additional steps are necessary for the immediate and orderly administration of [applied behavior analysis] treatment for Medicaid-eligible persons under the age of 21 who have been diagnosed with autism or Autism Spectrum Disorder.”

Seizing on the trial court’s language that applied behavior analysis be provided immediately both to the plaintiffs and to other children, the state officials first argued that the court had stripped them of their role in individual medical-necessity determinations by ruling that applied behavior analysis was medically necessary for every child. This argument was a red herring. That a Medicaid-covered service must be medically necessary for each child and that the state has a role to play in that determination were never in dispute. The district court did not decide otherwise. Thus, while ordering the lower court to make undisputed clarifications of two paragraphs of the order, the court of appeals found no abuse of discretion.

The state next argued that the district court abused its discretion when it granted affirmative injunctive relief to nonparties in the absence of a certified class. This second argument, in contrast to the first, was a huge surprise and posed a significant issue. The trial court record was replete with evidence and argument—from the state in particular—that granting the plaintiffs’ requested relief would require the Medicaid agency to include applied behavior analysis as a covered treatment for other children with autism. At the very outset, the joint scheduling report included the plaintiffs’ uncontested statement that the case involved “systemic issues affect[ing] numerous indigent children in Florida who suffer from autism [and] that the ... relief they sought would remedy the alleged violation without moving for class certification.” At multiple junctures throughout the trial court proceedings, the Medicaid agency had highlighted the expense of covering applied behavior analysis for nonparties. Yet on appeal the agency suddenly argued that the district court had abused its discretion by ordering relief benefiting nonparties and that the relief had to be limited to the three plaintiffs. The agency strenuously objected to being ordered to provide applied behavior analysis as a covered benefit. Overturning this aspect of the district court’s injunction was vital to the state. Indeed, when the agency issued the trial court’s ordered notice to providers that applied behavior analysis was now a covered benefit, the notice explicitly stated that the service was being provided pursuant to a federal court order and that the agency “intends to appeal this ruling. If the ruling is overturned, Medicaid will cease to cover these services for the treatment of autism spectrum disorders.”

The Eleventh Circuit agreed and ruled that “the district court did not abuse its discretion in issuing a permanent injunction that … requires Medicaid coverage of this treatment.” The court did not vacate the injunctive and declaratory relief or limit the relief only to the plaintiffs, as the state had asked. Instead the appeals court ordered, sua sponte, that the final declaratory judgment and permanent injunction be published in their entirety.

While the evidence and ruling in K.G. concerned a single current treatment for autism, our takeaway message is not simply that children with autism are entitled to Medicaid coverage of medically necessary applied behavior analysis. Rather, our point is that your state Medicaid agency must not categorically exclude covering treatment for autism—or any other condition. Moreover, assuming the absence of an equally effective and less expensive treatment, the state must cover for children under 21 any treatment that falls within the Medicaid Act’s listing of covered services, will correct or ameliorate the child’s condition, and is not experimental. The determination of whether any future and as-yet-uncovered treatment for autism (or any other condition) is experimental should hinge on a reasonable standard for evaluating effective treatments for that particular condition—rather than on the type of “gold standard” insisted on by the Florida Medicaid agency in K.G. v. Dudek.