“Health literacy is a state of knowledge and comfort that allows you to navigate the world and achieve wellbeing,” Danielle Brooks, director of quality health equity at AmeriHealth Caritas, told Home Health Care News. “It is critical to navigating, supporting and advocating for yourself when experiencing a medical or health-related need.”

AmeriHealth Caritas, based in Newtown Square, Pennsylvania, is a national managed care solution provider.

Limited health literacy significantly impacts Medicaid members, with 60% having basic or below-basic literacy, compared to only 24% of those with employer-sponsored coverage, according to the Center for Health Care Strategies. This demographic includes people aged 65 and older, individuals with lower incomes, those with lower education levels, people with limited English proficiency and minorities.

Furthermore, low health literacy rates lead to higher hospital use, higher mortality rates and higher health care costs. Improving rates could prevent one million hospital visits and save over $25 billion annually, according to the Centers for Disease Control and Prevention (CDC). Health literacy is essential in home care because it can affect a patient’s ability to understand and follow their treatment plan.

Oftentimes, patients also don’t realize that home health care or home care are options available to them.

“The complexity of the health care system and health concerns like COVID-19 require strong literacy skills to find, understand, evaluate and use health information to make informed decisions,” Sabrina Kurtz-Rossi, assistant professor at Boston’s Tufts University School of Medicine, told HHCN. “Compelling sources of health information, including inaccurate information on social media and the internet, intensify the need for improved health literacy for all.”

The Centers for Medicare & Medicaid Services (CMS) and the Department of Health and Human Services (HHS) have listed improved health literacy as organizational priorities. Specifically, HHS has included it in its Healthy People 2030 initiative.

Organizations and professionals can enhance their health literacy by implementing proven strategies. These include addressing questions in simple, non-medical language and creating and testing written materials for the intended audience, as per the HHS.

It’s important to consider that any patient may face challenges in understanding health information. Adults with limited literacy often feel ashamed of their abilities and may conceal their difficulties. Conducting informal client assessments can help identify individuals with limited literacy skills.

“Organizations should start by asking themselves this question,” Brooks said. “What do we need to do to reach our clients in a way they understand and that speaks to them? Materials and messaging need to be presented in a way that is most easily understood by clients and resonates with them. Employees must learn how to incorporate health literacy into their work every day.”

State contracts often require insurers serving Medicaid enrollees to have materials available in multiple languages, written at a sixth-grade reading level or lower, and have member-facing staff who can speak languages other than English.

“It is important to have data on how your current and potential clients understand and process information,” Brooks said. “This includes not only what languages they speak but also factors like age, education level, gender identity, sexual orientation and family structure. This information provides important insights into their needs. It is about communicating to members in a way that is most easily understood and actionable.”

The CDC recommends asking patients how often they need help reading written material from their doctors or pharmacies and asking them to explain instructions in their own words to show that they understand. Use videos, models and pictures to help clients learn. Listen to concerns without interrupting and consider clients’ cultural and linguistic norms when developing messages. Use certified translators and interpreters to adapt to language preferences.

“There are validated tools for analyzing written health information for reading ease and accessibility,” Kurtz-Rossi said. “These include the Patient Education Materials Assessment Tool, the CDC Clear Communication Index, and the Readability, Understanding and Actionability of Key Information on Informed Consent Forms (RUAKI) Indicator. Readability formulas can tell you the reading grade level at which a material is written but do not assess layout and design, cultural relevance or other features that help make information accessible.”

Active engagement is also vital to improving clients’ health literacy and ensuring they receive the best care. Engaged clients are more likely to follow treatment plans and work with their caregivers to make informed decisions.

Caregivers should encourage questions, ask clients to express concerns, and readily offer information during visits. Open communication helps build relationships between clients and caregivers and may make clients feel more comfortable asking questions about their conditions.

“The ten attributes of literate health care organizations provide a framework for how organizations can ensure clear communication and understanding,” Kurtz-Rossi explained. “Health-literate organizations strive to provide equitable and understandable information and services using evidence-based health literacy interventions, including plain language in written and oral communication and teach back to confirm understanding. Other health literacy tools and resources can help organizations engage leadership, prepare the workforce, create a shame-free environment and use plain language print materials and websites.”

Caregiver literacy is also a concern

It is important to note that caregivers also have a range of health literacy skills.

“Health literacy is a multifaceted concept which reflects not only individual-level skills but also the unnecessary burden placed on clients and caregivers by an overly complex health system,” Rachel O’Conor, assistant professor at the Center for Applied Health Research on Aging at Chicago’s Northwestern University, told HHCN. “Thinking about health literacy as both an individual skill, but also an organizational trait, can be helpful for agencies to consider as they seek to promote health literacy among their caregivers.”

A recent study showed that 44% of caregivers demonstrated adequate knowledge, 36% demonstrated marginal knowledge and 20% had low health literacy skills. In adjusted analyses, caregivers with marginal and low health literacy demonstrated worse overall performance on health tasks and poorer interpretation of health information presented on print documents and recall of spoken communication. As a result, these caregivers demonstrated poor performance on everyday health tasks with which they commonly assist older adults. The application of health literacy best practices to support better training and capacity-building for caregivers was found to be warranted.

Researchers suggested online training modules to promote caregiver communication with health care clinicians. Following health literacy best practices, these modules should be developed using plain language and cultural inclusion.

“To ensure caregivers are equipped to provide a high level of care, agencies should provide skills-based training on how to assist with health-related tasks,” O’Conor said. “The training could incorporate health literacy best practices in order to promote comprehension and application of the information.”

O’Conor said that she has found that the inclusion of both spoken and print information can promote recall, as well as breaking the information into manageable pieces for better comprehension.

“All corresponding information needs to be easy to understand,” she said. “Passing a simple test demonstrating competency may be reasonable to ensure proficiency in these skills. This act of demonstrating proficiency is in essence the application of teach-to-goal procedures, which is a common health literacy best practice to promote comprehension of health information.”

Home-based care agencies that prioritize personal and organizational health literacy can benefit from multiple positive outcomes. Expanded literacy can improve client health outcomes, decrease emergency department visits by ensuring clients seek preventative care, reduce the number of dosing errors, help clients manage chronic conditions and increase satisfaction.

“Caregivers have a unique role to play when it comes to tailoring and communicating treatment plans to meet the unique needs of individual clients,” Kurtz-Rossi said. “Doctors are one important point of content, but it takes a health care team – including family members – and each member of the team needs to listen to client concerns and communicate plans and services clearly. Clear communication builds trust. When a client is engaged with and trusts their caregivers, they are more likely to follow recommendations.”

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The suit – first introduced in 2022 – accused the U.S. Department of Health and Human Services (HHS) of failing to properly administer the Medicare home health benefit.

Plaintiffs were arguing that home health services are required under Medicare law, and that the program had fallen short for certain individuals. Medicare law, for instance, authorizes coverage of up to 35 hours per week of home health aide services for personal, hands-on care, and the plaintiffs claimed they received very minimal to no services.

In April of 2023, The U.S. District Court for the District of Columbia dismissed the lawsuit.

“The lawsuit sought to change that in seeking a ruling requiring Medicare to increase oversight of home health agency operations,” National Association for Home Care & Hospice President William A. Dombi told Home Health Care News at the time. “The federal court dismissed the case based on its finding that it was only speculative that the relief sought by the Medicare beneficiaries could redress the alleged harm.”

Now, that dismissal has been upheld.

The Court of Appeals also believed that the plaintiff allegations could not be traced back to any of HHS’s enforcement practices.

At some point, there was also some concern that providers could be held liable for the shortcomings, but that will also likely not come to fruition. 

“I think the key thing for the agencies to watch out for is somebody trying to blame them,” Dombi said in 2022. “Home health agencies: Protect the patient, protect yourself and don’t let Medicare get away with this.”

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Rep. Michelle Steel (R-Calif.) grilled the secretary about an apparent lack of progress on curbing certifications for bad actors.

Steel also pointed to a potential discrepancy in the way home health agencies are accounted for, and how HHS and the the Centers for Medicare & Medicaid Services (CMS) tracks enrollment data.

The system in question is Quality, Certification, and Oversight Reports — also known as QCOR.

QCOR is an online reporting platform under CMS that allows the public to access timely and summarized data about providers and suppliers of both Medicare and Medicaid services. Information in QCOR includes provider names, addresses, sizes, ownership details and other general information.

According to Rep. Steel’s questioning, QCOR has not updated its information since early 2021 due to a system migration issue.

“My question here is, the public has a right to know what providers are enrolled in the Medicare program and it is completely unacceptable that the public-facing website has not been operational since 2021,” Steel said. “Can you explain why this has occurred and why the agency proceeded with enrolling over 800 new home health agencies in California?”

Though he pledged more detailed responses at a later date, Becerra told lawmakers that he was mostly unaware of what Steel was referring to and pledged to continue program integrity efforts.

“Congresswoman, what you’re presenting to me is something that I’ve not heard so I’ll have to get back to you on that,” Becerra said. “I will tell you, just as we were in our discussion about hospice care, home health care — which is a growing industry as well — is something that we’re trying to monitor more closely. We are constantly doing program integrity work in this field as well. We could try to respond more specifically to any questions you have, but what you’ve just mentioned does not sound familiar to me.”

In recent years, there has been a significant increase in the number of hospice providers enrolled in Medicare, particularly in Arizona, California, Nevada and Texas.

In some instances, multiple hospices have been operating from the same address without a corresponding increase in the population of eligible patients.

The surge in enrollment has raised concerns about potential fraudulent activities. One county in particular is once again in the spotlight: Los Angeles County.

What Steel referred to during Wednesday’s hearing was a discrepancy between QCOR figures and raw enrollment data sets made public by CMS.

There are 11,353 home health agencies enrolled in the QCOR data set and 11,577 enrolled in CMS’ raw data set.

Even though the totals aren’t far off from each other, there has been a significant shift in the locations of the home health agencies.

CMS enrolled 839 home health agencies from 2021 to 2023, according to data shared with Home Health Care News on background. Of those, more than 700 were listed in Los Angeles County alone.

However, there is no information about those agencies in the public-facing QCOR website.

“I can make sure that we give you a more complete answer than what I can give you right now,” Becerra said during the hearing. “Some of [these bad actors] go out and do things that are against the law or do things fraudulently, there’s no doubt that’s one of the reasons why under Medicare or Medicaid we are constantly trying to root out that fraud.”

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On Dec. 15, the Biden administration responded by asking a federal judge to throw out that lawsuit, in a move that NAHC considered a predictable outcome.

“The government’s position in responding to the NAHC lawsuit, as set out in its December 15 brief, was fully expected,” NAHC President William A. Dombi said in a statement shared with Home Health Care News. “Virtually every lawsuit against Medicare includes an effort to dismiss the case on the grounds that the court does not have the power to adjudicate the complaints.”

The lawsuit, pertaining to CMS’ home health payment methodologies, was put forth when NAHC felt like it had “no other option left.” After continued advocacy in Washington, D.C., and attempts at legislation over the previous two years, NAHC felt legal means had to be pursued.

In 2022, CMS finalized permanent cuts to home health payments. It did the same in 2023.

HHCN has previously broken down some of the viable legal arguments against CMS’ continued cuts to home health payments.

“We continued our conversations, discussions and advocacy with CMS in hopes of seeing something happening in the proposed rule that was issued last week,” Dombi said in July when the lawsuit was filed. “When that rule came out, CMS absolutely stuck to its position on the budget neutrality calculation methodology. It was decided that we really had no other option left to try to deal with that other than to go to court.”

Broadly, NAHC is alleging that CMS and HHS have applied an invalid and unlawful approach to determining home health payments.

“We would be looking to the court to provide some guidance on what that compliant methodology would be,” Dombi also said in July. “In our own analysis, we believe that providers of home health have been underpaid as it relates to budget neutrality. At minimum, we would expect to see the rate cuts from 2023, that were permanent readjustments to the base rate, and the one proposed for 2024, along with the temporary adjustments … to go away. The end product of that is that we would have a stable system to deliver home health services to Medicare beneficiaries.”

A breakdown of the brief

There are a few takeaways from HHS’ plea to a federal judge to get the lawsuit thrown out.

– “As a threshold matter, this case should be dismissed for lack of subject-matter jurisdiction. In 42 U.S.C. § 1395fff(d), Congress expressly provided that ‘[t]here shall be no administrative or judicial review’ of challenges to certain aspects of the administration of the Home Health Prospective Payment System.”

– “Even if review were not precluded, the Court lacks jurisdiction for the independent reason that NAHC’s members have failed to exhaust their administrative remedies, as they must to obtain judicial review under the Medicare statute. Under 42 U.S.C. § 405(h), incorporated into the Medicare statute by 42 U.S.C. § 1395ii, ‘[f]ederal subject matter jurisdiction over claims arising under the Medicare statute is permitted only upon the completion of the administrative process outlined in that statute and its implementing regulations.’”

While those are more high-level legal arguments, HHS also took aim at NAHC’s argument specifically.

– “NAHC’s insistence that CMS is required to pay home health agencies that same projected $16.6 billion each year for some indeterminate amount of time is not supported by the statute. Nor does it make sense. If overall usage of home health services in Medicare drops precipitously or home health agencies decide to provide fewer services for the same spell of illness, under NAHC’s theory, CMS should still pay home health agencies collectively $16.6 billion — a windfall for the industry. But under that same theory, if home health agencies provide more services for the same spell of illness, then CMS should still pay $16.6 billion — which would presumably draw a challenge from industry on opposite grounds.”

As mentioned previously, NAHC and Dombi were expecting this initial response.

“Medicare is simply trying to avoid getting the court to focus on the actual merits of our lawsuit,” Dombi said Tuesday. “We will have our day in court where we will establish that Medicare has violated the law with the payment rate cuts. That law requires that the PDGM payments result in ‘budget neutral’ spending on home health services. Reduced Medicare spending, never-ending roadblocks to access to care, and closures of home health agencies does not equal budget neutrality for patients or providers.”

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The Centers for Medicare & Medicaid Services (CMS) announced the news early Thursday.

Anyone can now review “detailed information on the ownership of more than 6,000 hospices and 11,000 home health agencies,” according to CMS. HHS is doing so in the name of “promoting competition” and “protecting consumers.”

HHS and CMS did the same for more than 15,000 nursing homes in September of last year, and they have done so for hospitals in the past as well.

“It’s plain and simple: families deserve transparency when making decisions about hospice and home health care for their loved ones,” HHS Secretary Xavier Becerra said in a statement. “President Biden has called for unprecedented action to increase transparency – and we are making more data publicly available than ever before. Shining a light on ownership data is good for families, good for researchers, and good for enforcement agencies.”

Among the ownership details that will now be publicly available:

– Enrollment information such as organization name, type, practice location addresses, National Provider Identifier (NPI), CMS Certification Number (CCN)

– Detailed information about each owner, including whether the owner is a company or an individual, as well as whether there’s a direct or indirect owner

– Data on M&A, consolidations and changes of ownership since 2016 for all home health and hospice agencies

“Transitioning to hospice care is often an emotionally overwhelming time for many families,” CMS Administrator Chiquita Brooks-LaSure said in a statement. “Making this data public increases transparency, giving families the information needed to help them identify the best care for their loved one. Providing information is a hallmark of this administration’s efforts to improve care because we understand that having good information allows people to make the best choices possible.”

Because home health and hospice – at times – have gained the stigma of being subsectors rife with fraud, the industry may see this as a welcomed development. The more transparency, the better.

Plus, again, other health care subsectors have already been subjected to this.

As for those that have gone through it, some skilled nursing facility stakeholders did have qualms about how certain ownership was labeled. For instance, distinguishing between private capital, private equity and REITs.

On his end, National Association for Home Care & Hospice (NAHC) President William A. Dombi thinks Thursday’s news is a step in the right direction.

“We appreciate the increased transparency that CMS offers with its home health agency and hospice ownership data,” he said. “It is clear that CMS is well positioned to evaluate the concerns we previously brought to its attention regarding the surge in hospice growth in several localities that raise program integrity questions. We will continue to explore this database and its potential uses by the public.”

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The plaintiffs had argued the home health services required under Medicare law were wholly insufficient.

Medicare law authorizes coverage for up to 35 hours per week of home health aide services for personal, hands-on care. In some instances, the plaintiffs claimed they had received minimal services or none at all.

In the dismissal, federal judges found that the patients’ complaint didn’t identify what HHS could have done to ensure adequate home health services were delivered to them.

In a statement sent to Home Health Care News following the dismissal, William A. Dombi — the president of the National Association for Home Care & Hospice (NAHC) — said that aide services have been a significantly declining part of home health services provided to Medicare patients since the 1990s.

“The lawsuit sought to change that in seeking a ruling requiring Medicare to increase oversight of home health agency operations,” Dombi said. “The federal court dismissed the case based on its finding that it was only speculative that the relief sought by the Medicare beneficiaries could redress the alleged harm.”

Some of the same concerns in the lawsuit were initially brought up when the Choose Home Act started to gain traction. That piece of legislation — which would provide an add-on to the home health benefit as an alternative to skilled nursing facility stays — has stalled in D.C.

The Center for Medicare Advocacy initially sued HHS on behalf of itself, the National Multiple Sclerosis Society and three individuals with personal stories on how they had been inadequately cared for and — in some cases — lied to about what Medicare converge they were eligible for.

Ultimately, the court threw out the case and wrote that home health agencies make “independent business” decisions for a wide variety of reasons as to why they accept patients into care and what services they make available to potential patients.

“Importantly, the court also recognized that the Medicare payment system, payment rates and labor market ‘surely play into an HHAs’ calculus on whether to offer aide services,’” Dombi pointed out. “NAHC has long argued that changes in Medicare payment by both Congress and CMS has led to a deterioration in the home health services available. The increased oversight sought through the lawsuit would not change that central weakness in the Medicare benefit.”

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Specifically, the committee believes that expanding PACE to more rural parts of the U.S. will help close gaps in long-term care.

“[We] believe that PACE exemplifies integrated care and that expansion of the model in rural America would improve the fragmented state of long-term services and supports (LTSS),” the committee wrote in its report. “A holistic approach that truly connects health and human services is unique and an integral aspect of PACE that improves the health and quality of life of rural elders and caregivers.”

Broadly, PACE helps dual-eligible seniors remain in their community through an interdisciplinary approach. More and more home-based care providers have gotten involved as it has gained in popularity.

The PACE model has been around for roughly a half-century, but organizations that offer PACE services are still not widespread. There are currently 150 PACE programs operating 273 centers in 32 states with a number of pending applications across the country.

Of those, only 17 organizations are in areas designated as rural.

PACE gained significant popularity during the pandemic as enrollees contracted COVID-19, or died as a result of the virus, at one-third the rate of nursing home residents, according to data from the National PACE Association (NPA).

Based in Alexandria, Virginia, NPA is an industry advocacy group that focuses on federal and state policies to support the financial viability of the PACE model.

“The commission’s thoughtful assessment of the challenges rural communities face and the role PACE could play in addressing those challenges is a real step forward,” Shawn M. Bloom, president and CEO of NPA, told Home Health Care News in an email. “We know these older adults [in rural areas] face an increased need for care, and yet they are among the most underserved by home- and community-based long-term care options.”

A handful of states are expanding their PACE programs this year. Now, the Department of Health and Human Services (HHS) could soon add even more momentum to the push for expansion.

To expand to some of the harder-to-reach areas of the country, the committee recommended HHS to support a PACE pilot focused on Medicare-only beneficiaries to assess viability in rural areas and figure out how much start-up capital would be needed for sustainability.

The committee also recommended HHS look further into telehealth capabilities for PACE programs and develop a resource guide to promote the model to rural and tribal communities.

Because PACE is the sole source of services, there is a substantial decrease in administrative burden for PACE clinicians, participants and caregivers, the committee found.

The program’s philosophy also falls in line with the shift to a more value-based approach for home-based care.

“Evidence indicating cost savings and improved health outcomes for PACE participants, particularly for individuals who are dual-eligible for Medicare and Medicaid, continues to grow,” the report read.

However, the visibility of PACE in rural areas remains low. Not all states have PACE organizations or approve PACE as a Medicaid option, and the hefty start-up costs are just one of the few barriers that exist when considering national expansion.

Although the recommendations are good news for PACE, there’s still a long way to go.

“These are great recommendations,” Bloom said. “However, as of today, they are only recommendations. Congress and the administration need to act so that PACE is affordable and accessible for older adults in rural areas.”

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So much so, in fact, that home health providers and advocates may start looking at President Biden himself as an ally in their fight against payment rate cuts from the Centers for Medicare & Medicaid Services (CMS).

Biden’s comments during an event celebrating the 13th anniversary of the Affordable Care Act included more support for home health care and its ability to increase patient satisfaction while reducing costs.

“People with disabilities could lose access to home health care and, with it, the ability to stay in their homes — which, by the way, shows it extends life of the people,” Biden said, ribbing his Republican counterparts. “People would much rather stay, if they could, just with a little bit of help in their own homes rather than go to a home. And it’s less expensive.”

Under Biden’s appointees in the Health and Human Services (HHS) department, however, CMS did implement a rate cut to home health Medicare payments in 2023, and plans to implement another one in 2024.

On the Medicaid side, though, the Biden administration has tried to commit more dollars to home- and community-based services (HCBS). The administration’s 2024 proposed budget, announced earlier this month, included $150 billion for HCBS over the next 10 years.

“Medicaid also pays for nursing home care for about two thirds of all Americans who live in nursing homes,” Biden said Wednesday. “Well, it’d be different if they were able to stay home.”

The $150 billion would support both state Medicaid programs and the caregivers conducting the care. HHS Secretary Xavier Becerra said it would help the U.S. recruit the next 1.3 million additional home care workers that the country needs “to meet the rising demand in America.”

Whether it’s through Medicare or Medicaid, home-based care does seem to be in Biden’s favor.

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That, and a plan to keep Medicare from becoming insolvent in the near-term future, were the most relevant home-based care takeaways.

Allocating resources to HCBS is a way for the federal government to support older Americans and those with disabilities who wish to receive personal care services in the comfort of their homes, the administration said.

Department of Health and Human Services (HHS) Secretary Xavier Becerra also made note of family caregivers in a press briefing Thursday.

“There are more than 53 million caregivers in the United States of America and together they provide for the $470 billion in unpaid care each year,” Becerra said. “But for them, $470 billion would have to be expended to provide the care that those loved ones are providing today. When we don’t provide for caregivers, it has a negative impact not just on physical and mental health, it also undermines our economy and our security to the tune of $600 billion in lost income.”

Specifically, President Biden promised Medicare would be solvent through 2050.

There’s concern that, without intervention, Medicare could be in trouble as soon as 2028. In order to push back its doomsday, Biden plans to up taxes for the nation’s wealthier individuals, specifically those who make over $400,000 per year.

“The budget I am releasing this week will make the Medicare trust fund solvent beyond 2050 without cutting a penny in benefits,” Biden wrote in an op-ed published by The New York Times this week. “In fact, we can get better value, making sure Americans receive better care for the money they pay into Medicare.”

In tandem with the budget’s release was a Biden speech on Thursday in Philadelphia, where he reiterated his support for HCBS, saying that it is cheaper to provide adults the ability for them to stay in their homes as they age.

In terms of the additional HCBS funding, Becerra said it will help the U.S. recruit the next 1.3 million additional home care workers that the country needs “to meet the rising demand in America.”

The proposed budget also includes resources to strengthen nursing home oversight, including $566 million for the discretionary CMS Survey and Certification Program. That’s a 40% increase above current funding, the White House said.

LeadingAge President and CEO Katie Smith Sloan said in a statement shared with Home Health Care News that this is the first time in decades the federal government has committed to “meaningful action” to ensure the country’s older adults and families can get the help they need.

“America’s population is aging rapidly,” Sloan said. “More people will need services – from care in their own homes and in residential settings, to community support like affordable housing for low-income older adults. We’re encouraged that the President’s public statements of support for older adults and families are reflected in the numbers released today.”

The $6.8 trillion dollar proposed budget also includes $32 million allocated to train nurse faculty and $28 million for innovative approaches to “recruit, support and train” the next generation of health care providers.

The budget includes $144.3 billion in discretionary funding and $1.7 trillion in mandatory funding for FY 2024.

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Although the lawsuit may come as a surprise to some, it doesn’t for Bill Dombi, the president of the National Association for Home Care & Hospice (NAHC).

“The actions of CMS and other policy changes have come home to roost,” Dombi told Home Health Care News. “We have seen a serious deterioration with the scope of services that are ultimately provided under the benefit. The deterioration has not been triggered by home health agencies or them shortchanging what they think patients need. It’s been the Medicare benefit shortchanging people.”

The plaintiffs in the case argue the home health services that are required under Medicare law have been wholly insufficient.

Medicare law authorizes coverage for up to 35 hours per week of home health aide services for personal, hands-on care.

The plaintiffs claim they have received very minimal or no such services at all.

“These beneficiaries qualify for aide services under the law, but they face a pattern of misinformation, denials and underservice by Medicare-certified home health agencies and Medicare contractors,” Judith Stein, founder and executive director of the Center for Medicare Advocacy, said in a statement. “They can’t wait any longer. Medicare must live up to its promise and ensure that older and disabled adults receive the home health aide services they require and qualify for under law.”

There have been a lot of rumblings about a lawsuit like this, Dombi said, and he figured something would have been filed in Washington, D.C., sooner.

Some of the concerns were initially brought up when the Choose Home Act started to gain traction, he said. That piece of legislation essentially would provide an add-on to the home health benefit as an alternative to skilled nursing facility stays.

Concerns were raised during those talks about the corrections that needed to be made in the base benefit of home health before adding on aspects to it, like Choose Home would.

“The lawsuit itself doesn’t surprise me,” Dombi said. “Having been on that side and involved in advocacy myself for many, many years, there’s a point where you exhaust all of your options, and you have no choice but to turn to litigation.”

The Center for Medicare Advocacy is suing on behalf of itself, the National Multiple Sclerosis Society and three individuals who all have personal stories on how they have been inadequately cared for and, in some cases, lied to about what Medicare converge they are eligible for.

“We serve many people who rely on Medicare for their health insurance but who cannot access the critical home health aide services they need for help with activities of daily living,” Karen Mariner, executive vice president of navigator experience with the National Multiple Sclerosis Society, said in a statement. “Our constituents are often incorrectly told that Medicare does not cover aide services for more than a few weeks. Our staff spends considerable time and effort working to connect people to the right solutions and this inaccurate message prevents many people with MS from receiving vital aide services that are supposed to be part of their Medicare benefits.”

There are similarities between this era of confusion and one in the late 1980s, Dombi said.

In 1987, NAHC, a class of Medicare beneficiaries, home health agencies and 13 members of Congress sued Medicare on its home health policy and claims audit practices. That led to the 28–35 hour aide services scope of benefits.

However, Dombi said that several changes in policies and practice — combined with payment rate cuts — have changed the scope of home health benefits to a point where it’s unrecognizable.

“At that point, what was happening was widespread, arbitrary, retroactive claims denials,” Dombi said. “This new generation has another major element to it. I think a lot of the outcomes are being driven by the changes in payment models and payment rates.”

The claims issues are still out there, but now they are just being compounded by the rates issue.

“They’re not giving you much money to provide care, and when you provide care, they’re second guessing whether or not it’s covered under the Medicare program,” Dombi said. “That chilling effect … is a potent reason to be afraid as well as to be unable to deliver the care.”

Looking ahead, home health agencies should understand that there is a risk agencies could be blamed for this.

Ultimately, agencies should be upfront and honest with patients about what kind of care they can provide and what kind they cannot.

“If it’s in the plan of care, they need to deliver the service,” Dombi said. “If they can’t deliver what’s in the plan of care, they should look to another home health agency that can. They’ve got to be frank with the patient and explain what’s missing and how they could fill the gap.”

The worst case scenario for home health agencies and its allies is if they are blamed for Medicare’s shortcomings, Dombi said.

The lawsuit is targeting the failure to properly oversee home health agencies. Agencies shouldn’t give oversight bodies — in this case, Medicare and HHS — ammunition to point the finger at them, Dombi said.

“I think the key thing for the agencies to watch out for is somebody trying to blame them,” Dombi said. “Home health agencies: Protect the patient, protect yourself and don’t let Medicare get away with this.”

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