Proposed Changes To the Public Charge Rule Will Cause Significant Loss of Health Care Coverage for Florida Children
Pursuant to a draft rule now being considered by the Trump Administration, the federal government would, for the first time, consider use of virtually any publicly funded benefit intended to safeguard the health, nutrition, housing and economic security of America's low income families in making public charge determinations. The range of benefits that could be considered would include Medicaid, CHIP, marketplace subsidies, SSI, state and local government cash assistance programs, public assistance for long- and short-term institutionalized care, state and local subsidized health insurance, WIC, SNAP, LIHEAP, transportation vouchers, public housing assistance, and educational benefits like Head Start.
This represents a major shift from long standing policy in which the only benefits considered in a public charge determination (which could result in denial of lawful permanent residence or entry to the U.S.) are cash assistance or long term institutional care. The Administration's stated intent is to “provide a strong disincentive for the receipt or use of public benefits by aliens, as well as their household members, including U.S. children.”
This brief estimates the potential loss of one particular benefit on a single subset of the potentially impacted Florida population-- citizen children in Florida currently enrolled in Medicaid/CHIP.
Decreased Enrollment in Medicaid/ CHIP Among Florida’s eligible children.
Lawfully present immigrants eligible for Medicaid or CHIP, as well as US citizen children with one or more immigrant parents, are already far more likely to be uninsured than those without immigrant family members based on currently (unfounded) fears of negative immigration consequences. If the draft rule goes forward, this disparity will grow as the new rule explicitly intends to have a chilling impact. The implications for loss of coverage among Florida's children--particularly in South Florida-- are significant. The universe of those impacted is larger than the data provided in this brief because, among other things, significant numbers of eligible children are not currently enrolled, and, as a result of the new rule, their parents will likely not pursue enrollment.
There are currently over 400,000 Florida citizen children enrolled in Medicaid or CHIP with a non-citizen parent. As illustrated in the graph below, half of them live in the Miami metropolitan area which includes: Miami-Dade, Broward, and Palm Beach Counties.
If the rate of disenrollment ranges from 15 to 35% among these families, between 46,000 and 107,000 children will lose insurance in Florida overall.
Note: The number of citizen children whose coverage would be adversely impacted under the draft rule is significantly higher than the data above since this analysis does not include an estimate of the children who are currently eligible but not enrolled.
For more information, please visit the Protecting Immigrant Families website. If you have any questions about the public charge rule, please contact Miriam Harmatz, email@example.com. If you would like more information about our methodology, please contact Matt Childers, Ph.D., at firstname.lastname@example.org.
Click here to download a copy of this brief.
Aging Today Features Our Board Member Paul Nathanson For His Decades of Legal Advocacy On Behalf of Older Adults
Leaked policy proposals, including to the long standing public charge rule, indicate the Administration’s intent to make life more difficult for immigrants, including their U.S. citizen children, by restricting their ability to access basic programs safeguarding the health care, nutrition, housing, and economic security of low-income families.
The Florida Health Justice Project is part of a national Protecting Immigrant Families Campaign bringing together local, state and national advocates to defend against these threats through outreach and education. The public, press and policy makers need to understand the harmful impact such changes would have on Florida’s families and communities.
The resources below provide Information and data on the public charge issue and include materials for Florida's health care providers, immigrant advocates and impacted individuals willing to share their stories. It is vitally important that we hear from you.
Written by Joan Alker and published by the Center for Children and Families. Reposted here with their permission.
The Children’s Health Insurance Program (CHIP) is extremely important to Florida as it helps about 345,000 Florida children get the health care they need to support their healthy development and succeed in school.
CHIP has also worked hand-in-hand with Medicaid to reduce Florida’s child uninsured rate to an all time low of 6.2 percent in 2016. This is still higher than the national rate of 4.5 percent.
The new federal CHIP law was good news for Florida’s children as it should protect their access to affordable health coverage for the next decade.
This week we released a report and hosted a webinar with the Health Affinity funders of the Florida Philanthropic Network on how the new CHIP law will work for Florida children and families.
The new law would:
In Florida, CHIP funds coverage for children in families of three earning up to about $3,723 per month. Florida uses federal CHIP funding to operate three programs: MediKids, Healthy Kids and the Children’s Medical Services Managed Care Plan. The CHIP matching funds are also supporting lawfully residing immigrant children in both Medicaid and CHIP.
The report is the second in a series of reports on CHIP recently published by Georgetown University CCF and the Health Affinity Funders of the Florida Philanthropic Network.
Joan Alker is the executive director of the Georgetown University Center for Children and Families and a research professor at the Georgetown University McCourt School of Public Policy. She is a nationally recognized expert on Medicaid and CHIP and has conducted extensive research and analysis on Florida’s public health coverage programs.
Florida Health Justice Project files comments opposing the Administration's changes to the Medicaid "equal access rule" that would erode access to Medicaid services
Florida Health Justice Project Issues Comprehensive Guide to State’s Medicaid Law
Washington – Multiple court decisions have quoted the late federal Judge Henry Friendly's observation that Medicaid law is “almost unintelligible to the uninitiated.” And while states must follow federal Medicaid law, each state program has its own policies and procedures. In response to this challenge, the National Health Law Program prepared a template guide that state advocates could to use in creating state specific Guides.
Based on the National Health Law Program’s template, the newly published Advocate’s Guide to the Florida Medicaid Program provides an overview of who in Florida is eligible for Medicaid; how to apply; what to do if an application or services are denied or delayed; and how the Florida Medicaid managed care program works.
In addition to providing a basic roadmap for obtaining Medicaid eligibility, the Guide provides Florida advocates with citations to the underlying statutes, regulations, policies, and managed care contracts if clients experience denials or delays.
With financial support from the Florida Justice Technology Center (FHTC), the Guide was prepared by Miriam Harmatz, Co-Director of the new the Florida Health Justice Project(FHJP), along with co-authors Margaret Kosyk of Coast to Coast Legal Aid of South Florida, Inc., and Jazmine-Janine Dykes, a third-year law student at the University of Miami Law School.
Harmatz said, “The Guide exemplifies FHJP’s mission, i.e. increasing the advocacy community’s capacity to ensure access to health care for low income Floridians, and we are deeply grateful to FJTC and NHeLP for their support.”
National Health Law Program Managing Attorney of the North Carolina office Sarah Somers said the Florida guide would be indispensable to health care advocates in the state.
“Medicaid is a vital health care program, especially for women, people of color, and low-income individuals and families,” Somers said. “The Advocate’s Guide to the Florida Medicaid Program is accessible and will prove integral to the advocates who work every day to ensure that Floridians struggling to make ends meet are not denied access to quality health care.”
Somers added, "We also look forward to working with FHJP on updating the Advocate’s Guide to the Florida Medicaid Program, if and when Florida decides to join 32 states and the District of Columbia in accepting federal dollars to extend Medicaid coverage to all low income adults as set forth in the Affordable Care Act. For that to happen we must forcefully counter the cruel and antiquated argument that low income people have to be ‘worthy,’ which really means only those who are aged, blind, disabled, a child, are provided affordable health insurance plans.”
Read the Florida Medicaid program guide here.
Please contact the National Health Law Program Communications Department at email@example.com or 202-552-5176 to speak with Harmatz or Somers about the new Florida Medicaid guide.
National Health Law Program, founded in 1969, advocates for the rights of low-income and underserved people to access quality health care.
The 24-page guide summarizes the legal governance of a complex and frequently changing federal-state insurance program that covers medical expenses for eligible families, pregnant women, elderly and disabled individuals and others. An additional 10 pages contain 128 specific legal citations.
“The guide addresses basic questions asked by advocates, applicants and beneficiaries,” said Miriam Harmatz, co-director of the new Florida Health Justice Project, who co-authored the guide with Margaret Kosyk of Coast to Coast Legal Aid of South Florida Inc. and Jazmine-Janine Dykes, a third-year law student at the University of Miami School of Law.
Among the questions the guide answers are: who is eligible for Medicaid; how to apply; what to do if an application is denied or delayed; what to do if eligibility is terminated; what services are covered; how managed care works; and what to do if a beneficiary’s services are denied, delayed, terminated or reduced.
In addition to providing a basic roadmap for obtaining Medicaid eligibility and/or services, the guide, which will be regularly updated, provides Florida advocates with citations to the underlying law and relevant policies in the event their clients experience denials or delays.
“The Advocate’s Guide is a wonderful resource for health-law advocates in legal services programs, as well as for pro bono attorneys working in this complex area of the law,” said Barbara J. Prager, executive director of Coast to Coast Legal Aid of South Florida Inc.
The new Florida guide is one of the first of its kind in the nation and is based on a template created by the National Health Law Program (NHeLP) for use in creating state-specific guides. It was produced with financial support from the Florida Justice Technology Center (FJTC), a nonprofit corporation established to increase access to justice through the innovative use of technology.
“The guide exemplifies the mission of the Florida Health Justice Project, which is to increase the advocacy community’s capacity to ensure access to health care for low-income Floridians,” Harmatz said. “We are deeply grateful to both FJTC for their financial support and to NHeLP for sharing their expert support and materials, including a template guide. It would not have been possible without them.”
The Advocate’s Guide to the Florida Medicaid Program is available at https://www.floridahealthjustice.org/medicaid-guide.
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.
First, a “thank you”to those responsible for the recent Global Health Equity Symposium at Carrolton School of the Sacred Heart in Miami. They gave everyone present the precious gift of inspiration. Part of the gift was no doubt due to the setting-- an iconic old school on Biscayne Bay where nature and buildings blend to make the other even more beautiful. And “credit where credit’s due:” the Symposium coincided with 3 days of perfect 70 degree weather and brilliant blue sky.
The event began with a documentary about the work of Partners in Health (PIH), Bending the Arc. If you’ve not heard of PIH or the co-founder, Dr. Paul Farmer, and you care about social justice and access to health care, you should read one of Farmer’s books or speeches or, better yet, see the movie. Famer has touched and saved countless lives, helped transform the health care systems of some the world’s poorest nations; co-founded one of the most profoundly positive and impactful non-profits in the history of nonprofits; spoken truth to power. Perhaps most inspiring…. he’s humble and collaborative.
A quick background on how the Symposium happened: Laurie Weiss Nuell, a Miami native whose family has long supported health care equity in Miami and around the world, suggested to Dr. Farmer that he collaborate with Patti Wiesen. Patti is a Carrolton teacher who shares their passion for social justice and imparts it to her students through her art classes, (scroll to bottom of homepage for a short video that tells symposium’s history. http://globalhealthequity.net.)
After the movie, in response to a question about Miami’s health disparities, Dr. Farmer said global health equity is not just about “far away problems;” that working on health justice in the states means focusing on legislation, and that this effort requires some understanding of the economics and financing of health care in America.
So, thank you Dr. Farmer for the perfect segue to a breakout session I led the next day on the moral and economic issues in Florida’s Medicaid expansion debate. Florida is one of 19 states that has still not extended health care coverage to low-income uninsured adults under the Affordable Care Act. As a result, over half a million Floridians have no path to affordable health care and Florida is leaving over $ 5 billion of federal funds per year on the table. We talked about how people (and our local economies) are suffering unnecessarily and how students, faculty and others can work with advocates, including the new Florida Health Justice Project, www.floridahealthjustice.org., on expanding Medicaid.
We talked about how Florida’s Medicaid expansion fight is similar to PIH’s struggle—both are about health care access for poor people who don’t have it. But compared to the monumental efforts of PIH in Haiti, South American and Africa-- where MOUNTAINS have been moved-- the struggle here is like moving a molehill. There are many of us in Florida to move that molehill; we don’t have to get on a plane, we can bend the arc at home.
By Miriam Harmatz, Co-Executive Director
Florida Health Justice Project's Public Comments Opposing the Florida AHCA's Proposal to Waive Medicaid's Three Month Retroactive Eligibility Period
Justin Senior, Secretary
Agency for Health Care Administration
2727 Mahan Drive, MS #20
Tallahassee, FL 32308
Submitted via email: FLMedicaidWaivers@ahca.myflorida.com
Re: Proposed Amendment to Florida’s Medicaid 1115 MMA Amendment (Project Number 11-W-00206)
Dear Secretary Senior:
This comment letter is submitted on behalf of the Florida Health Justice Project (FHJP). Our mission is helping to ensure access to low income Floridians with a focus on vulnerable low-income populations.
The Agency for Health Care Administration’s (AHCA’s) proposal to waive the federal Medicaid statute’s provision allowing for up to three months of retroactive Medicaid eligibility (RME) will have adverse impacts on access to health care—particularly for seniors and adults with disabilities—some of the most vulnerable in the state. This proposal is contrary to the objectives of the Medicaid Act, it undermines the purpose of the RME provision passed by Congress, and it fails to meet requisite criteria for a Section 1115 Demonstration Waiver.
Retroactive Eligibility is a Critical Provision of the Medicaid Act
Under federal Medicaid law, costs incurred during the three months prior to the month of application can be reimbursed if: 1) they are covered under the Florida Medicaid plan; and 2) the beneficiary would have been eligible for Medicaid at the time the expenses are incurred.
The Legislative history related to this provision is highly relevant. Specifically, the three month retroactive period is meant to “protect persons who are eligible for Medicaid but do not apply for
assistance until they have received care, either because they did not know about Medicaid eligibility requirements or because the sudden nature of their illness prevented their applying.” HR. Rep. 92-231 (1972) reprinted in 1972 U.S.C.C.A.N. 4089, 5099.
In other words, Congress responded to the simple fact that no one can predict sudden illness or accident. After someone is in a hospital or nursing facility, she or he may not be healthy enough to file a Medicaid application or may not understand that a Medicaid application should be filed. Furthermore, the process of preparing a Medicaid application may take weeks. Elimination of RME puts unfair burden on elderly, ill, and disabled individuals and their families. Those who experience a catastrophic injury rendering them unable to apply quickly for Medicaid will be responsible for medical bills incurred during a period in which their bills are likely the highest. As a result, vulnerable low income Floridians will be at risk of incurring crushing financial stress and debt.
Additionally, the state’s care system for elderly and disabled Floridians, including safety net hospitals and nursing homes, depend on retroactive Medicaid. If the RME period is eliminated, these health care providers may be unable to provide essential but expensive care until a Medicaid application is filed and approved.
The proposal also fails to make any exception for low-income Medicare beneficiaries in Florida who qualify for the Specified Low-Income Medicare Beneficiary (SLMB) or Qualified Individual-1 (QI-1). These programs pay Medicare Part B premium ($134/month.) Eliminating retroactive coverage means that low income Medicare beneficiaries who qualify for SLMB or QI-1 but who did not apply concurrent with the month of their initial Medicare enrollment will lose about $400. This is a tremendous sum for these low-income individuals. In contrast, the state saves very little. Indeed, the federal government pays 100 percent of the cost for QI-1 eligible individuals so there is absolutely no state savings achieved through eliminating their RME for this population; the proposal only serves to hurt these low income seniors and persons with disabilities. Put another way, the state’s rationale for this proposal, “to enhance fiscal predictability” makes no sense for this group of these low-income Medicare beneficiaries. Again, for QI-1s, there are no state costs, and for SLMBs, the costs of retroactive eligibility for this group are predictable, i.e. a flat premium for three months of eligibility.
There is also a risk that the Department of Children’s & Families Economic Self Sufficiency staff (DCF-ESS) who process Medicaid applications will not receive adequate and timely training and oversight to correctly implement this change to the RME eligibility period. For example, staff may conflate the concept of a “retroactive period” with the federal and state requirement that Medicaid eligibility begins in the month of application (as opposed to the month of approval). As previously mentioned, the individuals impacted by Florida’s effort to shorten the RME period include those with disabilities, and their Medicaid application processing period is generally at least ninety days. If DCF-ESS staff misunderstand or misapply the change, these individuals could lose additional months of eligibility to which they are lawfully entitled in addition to elimination of their RME period.
The Proposed Waiver Fails to Meet the Requirements of Section 1115
Under Section 1115 of the Social Security Act, states can submit a “waiver request” to the Secretary of HHS to waive some requirements of the Medicaid Act in order to test novel approaches” likely to assist in promoting the objectives [improving medical assistance for low income people]. This proposal fails to meet that standard. It not only fails to identify a specific proposition to be tested, it utterly undermines the objectives of the Medicaid Act by denying health care coverage to people who desperately need it. Waivers should be used to improve coverage, not to leave Medicaid eligible persons without coverage when they have health care needs, especially when those needs are unpredictable.
Also, while Section 1115 of the federal Medicaid Act allows HHS to temporarily waive certain requirements of the Act to experiment, pilot, or demonstrate the efficacy of a new approach to the administration of the Medicaid program, HHS can only waive requirements found within the provisions of 42 U.S.C. § 1396a. Although RME is referenced in §1396a of the Medicaid Act, it is separately defined in §1396d. In other words, the RME provision is not within the waiver authority of the Secretary because the provision lies outside of §1396a. There is also no evidence that it constitutes a ‘novel approach” that would “improve medical assistance for low income people” thereby belying the stated purpose of Section 1115.
Thank you for considering these comments. We urge AHCA to reconsider submitting this amendment as it contravenes the objectives of the Medicaid Act.
s/Miriam Harmatz, Katy DeBriere
Miriam Harmatz and Katy DeBriere
Florida Health Justice Project, Inc.
Center for Medicare Advocacy and Florida Health Justice Project Sue to Obtain “Off-label” Part D Prescription Drug Coverage for Beneficiary
FOR IMMEDIATE RELEASE
April 16, 2018
Center for Medicare Advocacy – Kata Kertesz: 202-293-5760, KKertesz@MedicareAdvocacy.org
Florida Health Justice Project – Miriam Harmatz: 786-853-9385, Harmatz@FloridaHealthJustice.org
On April 6, 2018 the Center for Medicare Advocacy and Florida Health Justice Project filed a lawsuit in the United States District Court for the Southern District of Florida on behalf of a 49-year-old Florida resident seeking Medicare coverage for the “off-label” (non-FDAapproved) use of a critically needed medication (Dobson v. Azar, 4:18-cv-10038-JLK).
Donald Dobson needs Dronabinol to control his debilitating nausea and vomiting. His symptoms result from severe pain after multiple surgeries he required due to a workplace injury. After numerous medications failed to provide relief, Mr. Dobson’s doctor prescribed Dronabinol, which significantly relieved his nausea and vomiting and allowed him to resume many activities of a normal life. However, when Mr. Dobson became eligible for Medicare Part D, his plan denied coverage because his particular use of the medication is not FDA-approved. After exhausting Medicare’s appeal system, Mr. Dobson is now seeking help in federal court as his only hope to receive this critically important and medically necessary treatment for his debilitating symptoms.
Kata Kertesz, an attorney with the Center for Medicare Advocacy said, “The Medicare agency is using an overly narrow interpretation of the law to deny coverage of a drug that it does not dispute is medically necessary for Mr. Dobson. The doctor prescribed this medication because it is the only one that has worked to control Mr. Dobson’s symptoms. But, he cannot afford it without Medicare Part D coverage.”
Mr. Dobson’s Medicare Part D plan should cover the Dronabinol because his use of the drug is supported by one of the “compendia” of medically-accepted indications listed in the Medicare law. Medicare looks to the compendia for acceptable off-label uses of medications, and the symptoms of nausea and vomiting are listed in an entry for Dronabinol. “Mr. Dobson’s position is strongly supported by another recent federal case about a beneficiary who gained Part D coverage of the same medication for very similar symptoms,” said Ms. Kertesz. “However, the Medicare agency is using an inappropriately restrictive reading of the law to claim that coverage cannot be granted for Mr. Dobson.” (See, Tangney v. Burwell, 186 F. Supp. 3d 45 (D. Mass. 2016)).
Miriam Harmatz, Co-Executive Director of the Florida Health Justice Project, stated, “this is an important case, and we hope there will be a clear ruling by the court that’s consistent with Tangney and a Florida Medicaid case, Edmonds v. Levine, 417 F. Supp. 2d 1323 (S.D. Fla. 2006). This will both ensure that Mr. Dobson gets the medication he desperately needs, and help ensure appropriate application of the law governing off label uses in other cases.”
The Center for Medicare Advocacy (www.medicareadvocacy.org) is a national, nonprofit, non-partisan law organization that works to advance access to comprehensive Medicare coverage and quality health care for older people and people with disabilities through legal analysis, education, and advocacy.
The Florida Health Justice Project (www.floridahealthjustice.org) is a new Florida nonprofit that works to ensure access to necessary health care for low-income Floridians.
Paul Nathanson, A Founding Board Member of the Florida Health Justice Project, Receives ASA Hall of Fame Award
Justice in Aging is proud to announce that the American Society on Aging is honoring Paul Nathanson with its 2018 Hall of Fame Award. The award will be presented today at 4PM in the Continental Ballroom during the opening plenary of the American Society on Aging’s annual conference in San Francisco.
Paul is a two-time former Executive Director of Justice in Aging. He served from 1972-1980 as the organization’s first Executive Director and then returned to serve from 2008-2013 when Justice in Aging’s current Executive Director, Kevin Prindiville, assumed the role. Paul continues to work as special counsel where he contributes to Justice in Aging’s efforts to restore and improve the Supplemental Security Income Program (SSI).
The Hall of Fame Award is presented to an individual who has, through a lifetime of advocacy and leadership, enhanced the lives of elders through demonstrated leadership on the national level.
“Paul has been a wonderful mentor and colleague over the years. His work has been instrumental in several precedent-setting legal cases that have returned billions of dollars in benefits to low-income older adults who would otherwise have had no access to justice”, said Kevin Prindiville, Executive Director, Justice in Aging.”
"Paul Nathanson is an icon in the world of legal services and elder justice lawyers. We are fortunate that he is now living in Florida and continuing his advocacy leadership and support on behalf of low income seniors. as a founding board member of the Florida Health Justice Project",- Miriam Harmatz co-Exec Dir. FHJP
Please join us in congratulating Paul!
Florida Health Justice Project (FHJP) Opposes Medicaid Work Requirement in Florida
Joins leading health care, disability rights, faith-based housing and civil rights groups opposing a new federal policy now before the Florida legislature.
(Miami, Florida) - March 5, 2018 - The Florida Health Justice Project (FHJP) has joined 160 organizations, representing leading health care, disability rights, criminal justice, faith-based housing and civil rights groups, in opposing the new Centers for Medicare and Medicaid Services (CMS) policy that would allow Florida to impose work requirements on Medicaid recipients. (https://lac.org/wp-content/uploads/2018/02/february-2018-Medicaid-work-requirements-letter-to-Sec-Azar.pdf)
The Florida Senate is currently considering a bill (HB 751) that has already passed the Florida House which would require some Medicaid recipients to provide proof they are either working, attending school or searching for employment.
This policy would have a significant and disproportionately harmful impact on low-income individuals with chronic health conditions, especially those struggling with substance use disorders (SUDs) and mental health disorders.
“Floridians on Medicaid who can work are already working. This proposal is another cruel blow to residents who can’t work because of illness or drug addiction, and it makes no sense to cut off their access to healthcare,” said Florida Health Justice Project co-director Miriam Harmatz.
FHJP also agrees with lawyers from the National Health Law Program, the Kentucky Equal Justice Center and the Southern Poverty Law Center who recently challenged the legality of Kentucky’s work requirements.
“Moreover, the proposal would be especially egregious in Florida, which has yet to expand Medicaid,” Harmatz said. “The individuals who would lose coverage are mostly parents who have serious health issues. Without health care coverage, children, as well as parents will suffer.”
To speak with Miriam Harmatz, call 786-853-9385 or contact her at firstname.lastname@example.org
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
FLORIDA JUSTICE TECHNOLOGY CENTER PARTNERS WITH FLORIDA HEALTH JUSTICE PROJECT TO BUILD NEW HEALTHCARE ADVOCACY WEBSITE
The new website will serve to address Florida’s lack of access to quality healthcare for vulnerable populations.
TALLAHASSEE, FLORIDA February 09, 2018 –Florida Health Justice Project (FHJP) has partnered with Florida Justice Technology Center (FJTC) to build a new health advocacy website, marking the official launch of FHJP and its mission. Led by co-founders and healthcare advocates, Miriam Harmatz and Katy DeBriere, FHJP is a newly established 501(c)(3) nonprofit devoted to advocacy that improves health care access and outcomes, including support of Florida’s Medicaid expansion efforts.
Florida has a history of limited access to affordable healthcare for its most vulnerable populations, including seniors, immigrants, individuals with disabilities and children. As a political bellwether state, Florida’s public perceptions of Medicaid, Medicare and the ACA will be a powerful voice in the ongoing national debate over healthcare. Through community outreach and education, technical support and advocacy efforts, FHJP will work in partnership with other advocate groups, policy makers and legal aid services, including the National Health Law Program (NHeLP) and Justice in Aging to address healthcare barriers.
FHJP’s co-founders are well equipped for the challenge, bringing an impressive combination of knowledge and expertise to the program. A former senior health law attorney at Florida Legal Services, Miriam Harmatz serves on the Board of the National Health Law Program and is one of Florida’s leading Medicaid advocates. In collaboration with local legal services programs, national experts and pro bono attorneys, Miriam has been lead counsel on multiple federal court cases that increased access to medically necessary treatments and due process for Florida’s Medicaid beneficiaries. “Accessing necessary health care can be challenging,” she said, “especially for low-income Floridians. The state’s failure to expand Medicaid has resulted in a lack of resources for healthcare providers and health law advocates are also under-resourced—especially considering the size of the state’s vulnerable populations and their unmet needs. We’re deeply grateful to FJTC for helping us join the collaborative effort to ensure healthcare access.”
Katy DeBriere is managing attorney of the Northeast Florida Medical Legal Partnership (NFMLP) and currently serves on the Board of Disability Rights Florida. She was instrumental in developing a statewide medical legal partnership and recently received funding to provide a series of webinars on public benefits programs available to low income Floridians.
Having partnered with FJTC in the past, Miriam and Katy turned to the legal technology organization again to create the website for their new nonprofit. FJTC has extensive experience in this area and built the site to showcase FHJP’s mission and the many resources they’ll soon have to offer. “We’re so excited to work with Miriam and Katy,” said Joyce Raby, FJTC’s Executive Director. “This is such an important cause and we’re honored to be part of the solution.”
You can see the new website at http://FloridaHealthJustice.org.
About Florida Justice Technology Center
FJTC is an independent statewide 501(c)(3) nonprofit corporation, devoted to increasing access to justice through the innovative use of technology.
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FHJP is a new nonprofit advocacy organization seeking to improve access to affordable healthcare in Florida through legal advocacy.
Potential Budget Savings and Revenue Gains from Medicaid Expansion in Florida: A Snapshot Based on FY 2016-17
Written by Esubalew Dadi and published by the Florida Policy Institute. Re-published here with their permission.
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:
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.
Published by the National Health Law Program and re-published here with their permission.
Advocates File Suit in Federal Court
Washington – Fifteen Kentuckians enrolled in Medicaid today filed a class action lawsuit against the Trump administration challenging its approval of sweeping changes to Medicaid law that will endanger the health care of tens of thousands of low-income individuals and families in the state. The plaintiffs are represented by the National Health Law Program (NHeLP), Kentucky Equal Justice Center (KEJC), and the Southern Poverty Law Center (SPLC). Jenner & Block is counsel to NHeLP in this case.
Filed in the U.S. District Court for the District of Columbia, the lawsuit charges that Kentucky’s recently approved Medicaid waivers violate the Secretary of HHS’s authority under the Social Security Act, because they are not an experimental project that is consistent with the objectives of the Medicaid Act. It is the first lawsuit brought to challenge a Trump administration Medicaid waiver approval.
“Through imposition of premiums and cost sharing, ‘lockouts,’ benefits cuts, and a work requirement, the waiver will radically reshape Medicaid in a manner that, by the State’s own admission, will result in substantial reductions in coverage,” the lawsuit states.
NHeLP Legal Director Jane Perkins said the Secretary far exceeded his authority in granting Kentucky’s waiver.
“These waiver approvals raise a host of legal issues -- not just the work requirements and premiums but eliminating health care services, such as transportation to health care facilities or providers. This amounts to a project demonstrating how to destroy a strong health care program,” Perkins said. “Allowing the State to ignore fundamental Medicaid protections will result in large numbers of low-income individuals and families losing health care coverage. We are calling on the federal court to step in and stop the Trump administration from re-writing the Medicaid Act and stripping Kentuckians of vital health care.”
KEJC Senior Attorney Anne Marie Regan said, “The Cabinet’s own estimate is that around 95,000 Kentuckians will lose Medicaid coverage. The purpose of Medicaid is to provide medical insurance to people who cannot afford it, not to create barriers to coverage. Demonstration waivers are supposed to make access to health care easier. This approval does the opposite. It is not only in violation of Medicaid law but is immoral.”
After HHS announced approval of Kentucky’s waiver, the state’s Republican Governor Matt Bevin promptly signed an executive order in an attempt to intimidate those at risk from seeking relief in the courts. Bevin’s executive order calls for the end of the state’s Medicaid expansion if his approved waiver is found to be illegal.
SPLC Deputy Legal Director Samuel Brooke said, “The governor’s threat – to punish the 400,000 residents who have received Medicaid under the expansion if a court rules against the Kentucky HEALTH project – is shameless. We will not be intimidated. We will defend the rights of individuals to enroll in Kentucky’s Medicaid program.”
The lawsuit’s plaintiffs represent Kentuckians from all walks of life who rely on Medicaid for their health care. They reside in all parts of the state and are active in various ways in their communities. They include a minister, who is also a mortician, a mechanic, a musician, a retired health care worker, a church administrator, a bank teller, students, caregivers, house cleaners, and housekeepers for a health care center and a university. The plaintiffs have a variety of health care concerns, from high blood pressure, diabetes, and mental health problems to poor vision and dental problems.
Under the approved waiver, they are all in danger of losing Medicaid coverage.
For all of the plaintiffs’ stories, see the complaint here.
To speak with Perkins, Regan, or Brooke please contact: Jeremy Leaming, NHeLP, 301-233-0867 or email@example.com; Anne Marie Regan, KEJC, 502-468-9403, firstname.lastname@example.org; or Ashley Levett, SPLC, 334-296-0084, email@example.com.
Implications of Senate Tax Plan’s Repeal of Individual Mandate on Florida: Almost 900,00 Fewer Insured Floridians, Higher Costs
If the proposed tax plan becomes law, approximately 900,000 Floridians will lose their health insurance and many will face higher premiums.
Background: The Senate’s Republican leadership is negotiating with members of the party’s rank-and-file to bring its version of the Tax Cuts and Jobs Act to a floor vote. The plan includes a provision to repeal the individual mandate in the Affordable Care Act (ACA). Earlier this month, the House passed a similar tax cut bill without repealing the individual mandate. President Trump has indicated that he would sign the plan regardless of whether it repeals the ACA’s individual mandate or not.
Millions of Americans Nationwide and Hundreds of Thousands Of Floridians Will Lose Health Insurance: The CBO projects that 4 million Americans will lose health insurance in 2019 nationwide and that number rises to 13 million by 2025. Of the 13 million, five million with low incomes will lose Medicaid coverage, five million will not sign up for coverage in the individual markets, and 3 million will lose employer-based insurance. In Florida, the Center for American Progress (CAP) estimates that by 2025, 873,000 people will lose health care coverage across the board.
More Expensive Marketplace Plans: Without a mandate to purchase insurance, some people will only purchase coverage when they deem that it is necessary (what economists call “adverse selection”) and the CBO estimates that this behavior will cause individual marketplace premiums to rise about ten percent. For example, according to the Center for American Progress, an unsubsidized family of four in Florida with middle-aged parents and children under 14 will see their marketplace premiums increase by $1860 in 2019.
Finally, the CBO has estimated that bipartisan Alexander-Murray legislation will not reduce the magnitude of the consequences described above.
By Matt Childers
By Miriam Harmatz
Op-Ed published in the Miami Herald
The incoming Congress plans to repeal the Affordable Care Act (ACA) while delaying replacement (think of making a U-turn into oncoming traffic). The nonpartisan Urban Institute found that 2.2 million Floridians, including thousands of children, would lose coverage under the anticipated repeal.
More than 50 years ago, I developed an autoimmune disease. One of my earliest childhood memories is of sitting in the hospital admission office with my mother and being told how much the charge was per day. I felt a total body panic because the bill for one day was more than my family spent on almost anything. When my mother reached over to comfort me, she used a word I’d never heard: “Don’t worry, we have insurance.”
There is no dispute that the ACA needs fixing. But with all of its problems, millions of Americans have gained affordable coverage, and our country is now close to universal coverage for children. Repealing the ACA without a viable and simultaneous replacement would be devastating. In Miami-Dade County, more than 350,000 residents are at risk of losing coverage. And not only will these people lose their insurance, Florida will lose more than $8 billion a year, including over $6 billion annually in the federal subsidies that made insurance affordable for low- and middle-income Floridians. For local healthcare providers, this translates into a loss of about $1 billion a year in federal dollars — and that does not begin to include the ripple effect of those dollars in the economy.
The reported plan is to fast track repeal of the ACA’s funding-related provisions through the “filibuster proof” budget reconciliation process. The replacement plan, which would be subject to filibuster and thus require 60 votes, would be delayed. Two of the key anticipated provisions include eliminating the federal subsidies (tax credits and cost-sharing reductions) that make insurance affordable for low- and moderate-income consumers and the mandate to have insurance.
Healthcare economists predict that eliminating federal subsidies and the insurance mandate, while maintaining the insurance regulations that ban lifetime and annual caps and preexisting-condition exclusions (which are politically popular and not subject to budget reconciliation) will destabilize the insurance market. This would occur even if the subsidies continue until 2019. Insurance only works if most people, including those who are young and healthy, are covered. Insurers need to pool risk between healthy enrollees (who cost little or nothing) and those who are sick (who cost a lot). Under the anticipated repeal, healthy consumers will leave the market, the sick will stay and the insurance markets likely will unravel.
In 1974, I wrote my college thesis on why national health insurance legislation failed to pass the 93rd Congress. The common wisdom was that our country was moving incrementally toward universal coverage. Thus, having passed Medicaid and Medicare in 1965, a national health insurance bill could be expected to pass by the end of the 1970s.
Instead, the healthcare debate grew incomprehensibly contentious. The ACA, which actually is the most conservative approach to healthcare coverage possible, finally passed in 2010 at tremendous political cost. And now, the hard-fought progress toward ensuring access to healthcare for all Americans, including those with preexisting conditions like mine, is very much at risk. Repealing the ACA could happen as early as January; but replacing it could take another 50 years.
My family was spared financial ruin because we were lucky enough to have insurance. This should not be a matter of luck. Anyone who has ever been in a hospital, or had surgery, or needed ongoing treatment with an expensive drug, or cared about someone who has been sick or injured should tell Congress ASAP: “No repeal without a simultaneous replacement."
Article written in Speaking of Justice: News from the Florida Bar Foundation
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.”
How Cuts to Safety Net Hospitals Impact the Uninsured in a State that Rejected Medicaid Expansion Funding
By Miriam Harmatz
Published on the blog of Georgetown University Health Policy Institute Center for Children and Families
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.
By Miriam Harmatz, Betsy Havens & Monica Vigues-Pitan
Published in the September 2015 issue of the Clearinghouse Community (Clearinghouse Community is part of the Sargent Shriver National Center on Poverty Law)
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.”
While children with other mental and behavioral health diagnoses could get coverage for their prescribed treatments, children with autism could not.
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.
The email … stated outright that the agency could not find an expert to testify on its behalf. It felt like Christmas had come early.
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.
As a legal matter, a state cannot have a service that covers only three children. As a practical matter, without systemwide billing codes and an established process for reimbursement, clinicians will not provide services.
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
Surprises on Appeal
On appeal, we were once again surprised by the state officials’ arguments. The state officials did not argue that applied behavior analysis was not a rehabilitative service within the Medicaid Act; nor did they argue that applied behavior analysis was experimental. They did not challenge the lower court’s finding that they had been arbitrary and capricious. Instead the state officials challenged the order as “overbroad” and asked the Eleventh Circuit to vacate and remand the lower court’s order to change the exclusionary policy as it applied statewide and to limit relief solely to the three plaintiffs.
This individual lawsuit was an appropriate and efficient vehicle for the affirmative injunction requiring the Florida Medicaid agency to provide applied behavior analysis as a covered treatment.
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.
Miriam Harmatz’s Acknowledgments
After 30 years as legal services lawyer, I had the great fortune to be lead counsel on this almost perfect case. The clients; legal services cocounsel (two of whom are coauthors on this article); our experts; trial cocounsel, Neil Kodsi; appellate cocounsel, Jane Perkins of the National Health Law Program; and Autism Speaks as amicus on appeal and its pro bono counsel, Greg Wallance of Kaye Scholer LLP, were perfect. Of course, parts of the appeal were frankly bizarre, and implementation remains a challenge.
See this article as originally published and with footnotes at the Clearinghouse Community website
The Florida Health Justice Project, a new nonprofit advocacy organization, seeks to improve access to affordable healthcare for Floridians, with a focus on vulnerable low-income populations.
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