January 4, 2021
Seema Verma, Administrator
Centers for Medicare & Medicaid Services
Department of Health and Human Services
Attention: CMS-9912-IFC
P.O. Box 8016
Baltimore, MD 21244-8016
RE: Comments on CMS-9912-IFC
Center for Medicare and Medicaid Services Interim Final Rule: Additional Policy and Regulatory Revisions in Response to the COVID-19 Public Health Emergency
Dear Administrator Verma:
Not Dead Yet appreciates the opportunity to submit comments on the Centers for Medicare and Medicaid Services (CMS) Interim Final Rule “Additional Policy and Regulatory Revisions in Response to the COVID-19 Public Health Emergency”. Not Dead Yet is a national grassroots disability rights organization led by disabled people, advocating for nondiscrimination in health care. We support people with disabilities’ equal rights to life-sustaining treatment. We oppose assisted suicide laws as a deadly form of discrimination. We support people with disabilities’ right to live in the community and not be forced into nursing homes and other institutions.
Medicaid provides necessary healthcare coverage to poor and disabled people, and is the primary funder of long-term services and supports (LTSS) required by older, disabled, and chronically ill people to live our daily lives. Home- and community-based services (HCBS) provided by Medicaid are the difference between disabled individuals being able to enjoy life in and as part of the community and segregation in institutional settings without choice and freedom.
Not Dead Yet advocates for nondiscrimination in healthcare; disabled people, especially those with multiple marginalized identities, face discrimination and bias by medical professionals and the healthcare industry at large. During a public health emergency, we are at even greater risk of being denied life-preserving or life-sustaining treatment through triage and crisis standards of care policies. Crisis standards of care based on discriminatory evaluations of disabled lives are pervasive.
Furthermore, disabled people who would be denied treatment under triage or crisis standards of care are being left out of vaccine distribution plans.[1]
Based on the overwhelming reliance on Medicaid for essential healthcare services including LTSS, the importance of HCBS to fulfilling the civil right of disabled people to not be institutionalized, the need for sufficient healthcare access to prevent disabled people from needing to seek care where we would be triaged, and the need for equitable access to the COVID-19 vaccine, Not Dead Yet strongly opposes the Interim Final Rule (IFR) allowing significant cuts to Medicaid funding and coverage.
The FFCRA correctly protected Medicaid beneficiaries.
The Families First Coronavirus Response Act (FFCRA), signed into law on March 18, includes an option for states to receive enhanced federal Medicaid funding. In exchange for the additional funds, states must agree to comply with maintenance of effort (MOE) protections. These protections help ensure individuals are able to get and stay covered during the crisis and receive needed services. The FFCRA includes an explicit requirement to preserve enrollee’s existing benefits – both their enrollment in Medicaid overall, and the services for which they have been eligible. At a time of such turmoil, Congress chose to protect enrollees and ensure access to services by maintaining the “status quo.”
In a reversal of CMS’s stated policy from March to October 2020, this IFR would now allow states to impose numerous types of coverage restrictions for individuals who are enrolled in Medicaid, including reduced benefits; reduced amount, duration, and scope of services; increased cost-sharing; and reduced post-eligibility income. The IFR will also result in terminations for some individuals who should not be terminated. We oppose these revisions to the MOE, which are inconsistent with the FFCRA and will result in harm for Medicaid enrollees. We also oppose allowing states to circumvent required transparency procedures for 1332 waivers and receive enhanced funding despite refusing to cover COVID-19 vaccination for some Medicaid enrollees. We recommend that CMS withdraw these provisions.
Reduction of Optional Benefits
This rule gives states sweeping authority to reduce optional Medicaid benefits; cut the amount, duration and scope of benefits; increase utilization management; increase cost-sharing; and reduce post-eligibility income – all with no consequences for their enhanced matching funds under the FFCRA. These changes contravene the letter and intent of the statute, and will result in significant harm for enrollees.
Optional Medicaid benefits include essential services like physical and occupational therapy, dental and vision services, and home and community-based services. After the previous economic downturn in 2008, many states made significant cuts to each of these services. Additional cuts at the state level are threatened as states grapple with the economic consequences of the pandemic.[2] Cuts to these services will cause significant harm.
While Not Dead Yet is generally opposed to the reduction of optional Medicaid benefits, we focus in particular on HCBS. HCBS benefits under Medicaid are optional and yet are essential for older, disabled and chronically ill people to exercise our preference and our civil right to not be institutionalized under the U.S. Supreme Court’s 1999 Olmsteddecision, which found that the unjustified institutionalization of people with disabilities is discrimination under the Americans with Disabilities Act.[3] Forcing older, ill and disabled people into nursing facilities is always a civil rights violation, always a threat to an individual’s health and well-being, exposing them to well-documented risks of abuse and neglect. Not only are individuals in congregate settings of all types at greater risk of contracting illnesses like COVID-19, but reports and investigations of abuse and neglect are less likely to take place as access to facilities is limited under coronavirus-related restrictions. Because of COVID-19, now more than ever institutionalization becomes a death sentence.[4]
Reduction in HCBS will further cement the institutional bias, which physically cosigns people to institutional settings but also encompasses the idea that disabled people belong in institutions and can only be served in those settings. And when the lives of those living institutions is devalued, that devaluation results in discriminatory and deadly denial of treatment. The details vary, but this experience is widespread. The case of Michael Hickson, a Black quadriplegic who contracted COVID-19 in a nursing facility, is illustrative.[5]
Reductions in the Amount, Duration and Scope of Services
The IFR would allow states to change the amount, duration, and scope of services. For example, when states faced budget constraints after the Great Recession, some states placed numerical caps on benefits like physician visits and hospital days. While these capped services may have been adequate for some enrollees, in many cases they were likely not sufficient for other populations, such as some people with chronic illnesses and disabilities.
Prior Authorization and Utilization Management Requirements
The IFR would also allow states to impose new prior authorizations and other utilization management requirements. These can harm Medicaid enrollees and providers in typical times, and these issues are likely to be significantly exacerbated during COVID-19. Presently, many providers are overwhelmed caring for COVID-19 patients. Increased prior authorizations will divert them from that essential work. Moreover, overloaded clinician offices and limited in-person visits make it more likely patients will “fall through the cracks” and not get their medications or other services when a prior authorization is needed. This concern is backed up by survey research, which reports that of the 52% of people whose families skipped or postponed care during the previous three months due to coronavirus, 82% did so because the doctor’s office was closed or had limited appointments
Increased Cost-Sharing
The IFR would allow states to increase cost-sharing, which would also harm Medicaid enrollees. Research over the last four decades has consistently concluded that the imposition of cost-sharing on low-income populations reduces both necessary and unnecessary care and correlates with increased risk of poor health outcomes. Further, the pandemic increases the harm caused by cost-sharing. The pandemic has significantly increased financial hardship among low-income families and families of color, making it less likely that they will be able to afford to pay additional cost-sharing.
Post-Enrollment Income Verification
The IFR also permits states to modify their post-eligibility treatment of income (PETI) rules. This could leave enrollees with disabilities who are institutionalized or using a home and community-based services (HCBS) waiver program with less money to meet their basic needs. Disabled people have a higher cost of living than nondisabled peopled.[6]Anecdotally, disabled people have reported increased costs during the pandemic resulting from having to obtain medical supplies that are in greater demand and having to rely delivery services to obtain food and household items to avoid contact with others and risk coronavirus infection. If the amount of money Medicaid beneficiaries are allowed to keep is reduced, it can cause significant harm. If states don’t allow HCBS waiver enrollees to keep enough money each month to cover their living expenses, they may be forced into institutions. This prospect is particularly frightening during the pandemic, given the disproportionate impact of COVID-19 on people in congregate settings.
Coverage Tiers
CMS should abandon the coverage tiers system in the IFR. The IFR would allow states to move people from one eligibility category to another in certain circumstances, even when that would result in an individual receiving fewer benefits. This system violates the FFRCA, which requires preserving individuals’ benefits, and can cause substantial harm. This harm will disproportionately fall on certain groups, including people with disabilities and older adults.
Under the IFR, some individuals enrolled in 1915(c) home and community-based service waivers could be moved to Medicaid expansion coverage, which can come with increased cost sharing requirements and fewer benefits, leading them to not get needed services. Some of these individuals have likely been found to no longer be eligible for 1915(c) waiver enrollment because they received inadequate remote functional assessments during the pandemic.
We are also concerned that states will need to spend significant effort implementing these changes to their eligibility system. This effort would be far better spent doing other work, such as bolstering their ex parte renewal processes and updating addresses to better prepare for conducting redeterminations at the end of the public health emergency. Moreover, such massive changes to each states’ eligibility system will likely generate errors.
General Eligibility Exceptions
Additionally, the IFR authorizes states to terminate coverage for individuals that should be protected under the FFRCA. This violates Congress’ intent and should be rescinded.
Valid Enrollment
Under the IFR, CMS narrows the definition of “valid enrollment” to exclude some enrollees who should be considered properly enrolled and covered by the protections of the FFRCA.
CMS states that individuals eligible by presumptive eligibility are not “validly enrolled” for the purposes of the continuous coverage provision, on the theory that these individuals “have not received a determination of eligibility under the state plan.” However, the Medicaid statute consistently describes presumptive eligibility as (for example, under hospital presumptive eligibility) “determining, on the basis of preliminary information, whether any individual is eligible for medical assistance…” (emphasis added).[7] CMS’s attempt to distinguish presumptively eligible populations is therefore inconsistent with the Medicaid statute. Moreover, pandemic-related circumstances are making it extremely difficult for many people to complete a full Medicaid application before their presumptive eligibility period ends.
Determinations of Ineligibility
The IFR writes that “if a state determines that a validly enrolled beneficiary is no longer eligible for Medicaid, including on a procedural basis”, the state meets the MOE requirements by “continuing to provide the same Medicaid coverage that the beneficiary would have received absent the determination of ineligibility.” This language needs clarification or correction. We note two important considerations.
First, we believe CMS should preserve the requirement that the MOE provision apply to procedural problems. For example, an individual who is delayed in responding to state outreach or requests for information may be dealing with serious health, economic, or housing problems related to the COVID-19 crisis, and such procedural breakdowns cannot be an excuse to discontinue eligibility in violation of the FFCRA.
Second, however, CMS must correct or clarify the use of the terms “determines” and “determination” in the regulation. No one protected by the MOE can be “determined” ineligible, as that would be contrary to the FFCRA’s requirement that during the PHE these enrollees be “treated as eligible”. We suggest CMS use a term such a “nonactionable finding of ineligibility” instead of “determination of ineligibility.”
Moreover, CMS should make clear that any such nonactionable finding of ineligibility during the public health emergency is not sufficient or even relevant to terminate someone at the end of the PHE. CMS should clarify that after the PHE ends, individuals must receive a full redetermination, based on current, point-in-time information (current income, household composition, etc.).[8] Such a review must consider all bases of eligibility, and give enrollees at least 30 days to respond to a request for information (for those eligible using modified adjusted gross income).[9] After the MOE ends and a full redetermination occurs, if an individual is found ineligible they are entitled to due process protections, such as a notice of termination that includes the effective date of the action and appeal rights.[10]
1332 Waiver Changes
Under the IFR, CMS also proposes to allow the “modification” of public notice, comment, and hearing requirements for Section 1332 waiver requests pursuant to the Affordable Care Act, as well as post-award public hearings. These exceptions conflict with 1332 statutory requirements, and are overbroad and unnecessary.
The IFR conflicts with the Affordable Care Act in that, through “modification,” they might allow the elimination of required transparency provisions. The IFR would also allow public notice and comment periods to be effectuated after the state files the application (in the case of state comment periods) or CMS conducts federal review (in the case of federal comment period). This will result in state proposals and CMS approvals that have no meaningful stakeholder input, violating the statute and congressional intent.
In addition to being required by statute, the transparency process creates a minimal delay, in exchange for substantial benefit. As CMS has previously noted, the public notice and comment process on 1332 waivers “promotes transparency, facilitates public involvement and input, and encourages sound decision-making at all levels of government”.[11] This process is essential to ensure that consumers have input into proposed waivers.
Availability of COVID-19 Vaccines
As of December 8, 2020, more than 283,000 people in the United States have died as a result of COVID-19, with almost 15 million confirmed cases. Public health experts agree that widespread use of a safe and effective preventive vaccine will be essential to curb this deadly pandemic.
Although no COVID-19 vaccine had yet been approved in the U.S., Congress recognized the vital importance of coverage and access to COVID-19 vaccines when it enacted the FFCRA. Congress provided that state Medicaid programs receive enhanced federal funding if they cover approved COVID-19 vaccines, and provide access without cost sharing, during the period of the public health emergency.
However, CMS is inexplicably seeking to limit access to COVID-19 vaccines, allowing states to exclude coverage of vaccinations for people enrolled in Medicaid limited benefit programs. These Medicaid limited benefit programs include programs focused on the treatment of breast and cervical cancer and tuberculosis, family planning programs, and some programs provided under § 1115 waiver authority.[12] Further, CMS does not provide any explanation or analysis on how it would determine which of the existing 57 § 1115 waiver programs would be subject to the IFR limits on vaccine coverage.
The FFCRA makes no distinction between full and limited benefit Medicaid categories and specifically applies vaccination requirements to waiver programs. The obvious intent of the provision was to ensure widespread access to COVID-19 vaccination. CMS should not invent an ambiguity and then interpret it contrary to the statute’s overriding intent. Congress is well familiar with limited scope benefits categories and would have carved out exceptions to FFRCA if it wanted to carve out such exceptions.
Barring access to lifesaving COVID-19 vaccines would hamper efforts to combat the pandemic, and would harm tens of thousands of individuals who rely on Medicaid limited benefit programs. The IFR is inconsistent with the FFCRA statutory language and intent, relies on misreading of the Medicaid statute, and is harmful as a matter of health policy. It should be withdrawn.
Use of an Interim Final Rule
We do not believe CMS should have implemented these policies – which directly and materially access to health care for tens of millions of enrollees during a pandemic – as an interim final rule. The Administrative Procedure Act anticipates that that government agencies will implement regulations only after receiving and considering public comment and that interim final rules will be used rarely and only of necessity – for example when a comment period would be “contrary to the public interest.” There is no significant exigency associated with a notice and comment period for the policy contained in this IFR, whereas reducing health care eligibility, decreasing benefits, and increasing costs during a pandemic without an opportunity to comment will lead to immediate harms and is clearly contrary to the public interest. These policies will cause substantial harms before CMS has time to finalize the rule – harms that could have been avoided had CMS solicited public comments, like ours, before the rule went into effect.
Conclusion
Disabled people require more HCBS, not less. We require the ability to meet our costs of living. We require coverage of the COVID-19 vaccination. The proposed changes to the Medicaid program would result in more people will be admitted to or remain stuck in nursing facilities who don’t need to be. This not only violates the right of people with disabilities to community services, but is especially dangerous during this COVID-19 pandemic.
This is an unprecedented pandemic, and Congress took unprecedented measures under the Families First Coronavirus Response Act to make sure Medicaid enrollees can access the services they need. The aforementioned provisions of the Interim Final Rule fly in the face of the law, and rip health care away from people at a time when health care is more important than ever. We strongly oppose these provisions of the Interim Final Rule, and urge HHS to withdraw them immediately.
Finally, we have included citations and direct links to research and other materials. We request that the full text of material cited, along with the full text of our comment, be considered part of the formal administrative record for purposes of the Administrative Procedures Act. If HHS is not planning to consider these citations part of the record as we have requested here, we ask that you notify us and provide us an opportunity to submit copies of the studies into the record.
Thank you for the opportunity to comment on this important issue. If you have further questions, please contact Diane Coleman at dcoleman@notdeadyet.org.
Sincerely,
Kathryn Carroll, Esq.
[1] See our comments on the Discussion Draft of the Preliminary Framework for Equitable Allocation of COVID-19 Vaccine from the Committee on Equitable Allocation of Vaccine for the Novel Coronavirus, National Academies of Sciences, Engineering, and Medicine. New York’s vaccination plan, for example, contemplate providing vaccines to residents of nursing ”homes” and other congregate facilities, and home care workers. However, it does not contemplate individuals who might qualify for a nursing facility level of care but are living in the community with HCBS supports. See https://covid19vaccine.health.ny.gov/phased-distribution-vaccine#phase-1a.
[2] For example, New York made significant cuts to Medicaid in the State budget on April 2, 2020. Those cuts are described here: http://www.wnylc.com/health/news/85/#summary.
[3] See generally Kaiser Commission on Medicaid and the Uninsured, Olmstead’s Role in Community Integration for People with Disabilities Under Medicaid: 15 Years After the Supreme Court’s Olmstead Decision (June 2014), available at https://www.kff.org/medicaid/issue-brief/olmsteads-role-in-community-integration-for-people-with-disabilities-under-medicaid-15-years-after-the-supreme-courts-olmstead-decision/.
[4] As of December 4, 2020, the New York Times reported that 38% of coronavirus-related deaths in the U.S. are linked to nursing facilities. https://www.nytimes.com/interactive/2020/us/coronavirus-nursing-homes.html.
[5] See https://www.npr.org/2020/07/31/896882268/one-mans-covid-19-death-raises-the-worst-fears-of-many-people-with-disabilities.
[6] See https://www.nationaldisabilityinstitute.org/reports/extra-costs-living-with-disability/.
[7] 42 U.S.C. § 1396(a)(47)(B)
[8] See e.g., 42 U.S.C. § 1396a(e)(14)(H); 42 C.F.R. § 435.603(h)(2).
[9] 42 C.F.R. §§ 435.916(a)(3)(i)(B), (f)(1)
[10] See e.g., 42 C.F.R. §§ 435.917(b)(2), 431.210
[11] 76 Fed. Reg. 13556 (Mar. 14, 2011).
[12] See 42 U.S.C. § 1396a(aa) (Breast and Cervical Cancer Program); 42 U.S.C. § 1396a(z) (Tuberculosis); 42 U.S.C. § 1396a(ii) (Family Planning); 42 U.S.C. § 1315 (Section 1115 demonstration projects).