NDY Files Public Comment On Federal Healthcare Interim Final Rule In Response To COVID

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NDY is grateful to disability rights attorney Kathryn Carroll for her assistance in filing a public comment on the [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. Excerpts are below and, to read the whole comment, go here.

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] . . .

To read the whole comment, go here.

References:

[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.

NDY In Solidarity: Speaking Out Against Racism

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NDY’s Director of Minority Outreach Anita Cameron is often interviewed by both disability and mainstream press. She has a long history of activism on behalf of disability rights, especially in her decades of work with ADAPT to get lifts on buses as well as major increases in home and community-based services that help older and disabled people stay out of nursing homes. Media outlets often contact her as a spokesperson about that history.

Since Anita joined NDY’s staff in 2017, media have also contacted her about NDY issues, especially during 2020 concerning COVID crisis standards of care.

When articles quoting Anita don’t include NDY issues, NDY doesn’t typically mention them in this blog. We don’t get comments about them. An example would be a recent Time magazine article. But this week, apparently in response to that article, NDY received a comment that is horrific and cannot be ignored.

This comment was submitted on a blog featuring Anita’s October 2nd testimony at ADAPT’s virtual People’s Hearing on home and community based long term services and supports:

“The USA needs an all out race war and n***** wh***s like you need to be hanging from trees!”

This is an outrageous call to bring lynching back! It descends to the grotesque depths of human capacity for hatred and violence. And it’s one of too many comments NDY and Anita have received in recent days. There have also been many Facebook comments and Anita Cameron has reported receiving death threats by direct message.

I know there are people out there who will want to know more, trying to find some way to shift some blame to Anita for becoming a target of racial slurs and death threats. When Time contacted Anita about being interviewed, she was told the article would be about disability representation more broadly and not all about Helen Keller. Her only statement about Helen Keller – “I don’t have a perspective on Helen Keller. She’s just another, despite disabilities, privileged white person” – is simple fact. Keller’s family was well off.

NDY will continue to work in solidarity with the disability rights and broader community to combat racism. We raise our voices to support Anita Cameron and all who have experienced racial injustice in all its forms.

NDY condemns these outrageous comments and the social/political climate that gives them any form of permission to be expressed. They are unacceptable. They must not be tolerated. Whenever racism rears it’s ugly head, many say this isn’t who we are, this isn’t our country. But it has been from the beginning. We must acknowledge this and then work harder to end it.

 

Carol Cleigh Sutton: We Hold These Truths To Be Self-Evident…

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…but we don’t.

Image of Carol Cleigh Sutton, a fair skinned woman with white hair, pulled back, wire rimmed glasses, and a white turtle neck top with a silver necklace featuring two connected silver handcuffs with small white stones.
Carol Cleigh Sutton

In a phone conversation, a friend of a friend invited me to an event in the Spring. I said that it would depend upon a vaccine for Covid-19. Since our mutual friend and I are both high risk, neither will be traveling before then. She then volunteered that she thinks people in nursing homes ought not to get the vaccine because they are “useless.” A perfectly ordinary retired nurse, has no problem with people already denied liberty and mostly denied the pursuit of happiness, being denied life as well. In her view, equality, held to be ‘self-evident’ in the Declaration of Independence, doesn’t exist.

When I recounted this conversation to our mutual friend, she recounted a similar conversation she’d had with her brother. He had maintained that the virus only kills “the unproductive.” That is, until a good friend of his died.

The truth is that the history of human civilization is a tension between two positions: hierarchy of value and equity of value. Either we value all human lives equally or we don’t.

Many ideologies defend hierarchy, Divine Right to Social Darwinism to Utilitarianism have tried to normalize the rejection of equality. Of these, Social Darwinism and Utilitarianism seek to ‘perfect’ humanity by killing those they consider ‘useless.’

We come down on the side of hierarchy at our peril. There is real peril of becoming a victim, because those who have gone down the hierarchy rabbit hole have never been able to put limits on the devaluation of lives. They see society as a pyramid with themselves at or near the apex. When you cut off the base of a pyramid, you have a slightly shorter pyramid and new victims at it’s base. That retired nurse may well find herself being called “useless” by more privileged people at some point.

Niemöller wrote “First They Came,” as a warning to future generations, and make no mistake, in reality they came first for the disabled. We refuse that warning at peril of becoming monsters. Consenting to the deaths of others, even considering others ‘useless,’ causes us to lose something of our own humanity, something we can ill afford to lose.

Amy Hasbrouck Submits Powerful Testimony To Canadian Senate Committee

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On November 23, 2020, Amy Hasbrouck, NDY Board Member and Director of Toujours Vivant-Not Dead Yet, submitted testimony to the Senate Legal and Constitutional Affairs Committee of the Canadian Parliament.

Head and shoulders photo of white woman smiling with dark brown hair combed back from her face, wearing a white blouse.
Amy E. Hasbrouck

First, her description of TVNDY is a strong and moving introduction to the disability rights opposition to assisted suicide and euthanasia laws:

Thank you for the opportunity to address the committee. Toujours Vivant-Not Dead Yet (TVNDY) is a project of the Council of Canadians with Disabilities to inform, unify and give voice to the disability rights-based opposition to assisted suicide, euthanasia, and other ending-of-life practices that have a disproportionate impact on disabled people, women, elders, indigenous and racialized people, and persons subject to other forms of oppression. TVNDY was founded in 2013 as a progressive, non-religious organization of disabled people and our allies. We believe that there can be no free choice to die while old, ill and disabled people don’t have a free choice in where and how we live. We recognize that the movement toward assisted death is driven by the devaluation of disabled lives captured in the phrase “better dead than disabled” and manifest in society’s inequitable application of suicide prevention policies; where non-disabled people who want to die get suicide prevention services, while disabled people get suicide completion assistance.

The Canadian Parliament will soon be voting on a bill to expand the current euthanasia bill. This bill is in response to a court case (Truchon, et al.) in which two disabled people, one with cerebral palsy and one with MS, sued because doctors would not say their deaths were “reasonably foreseeable,” the vague standard under the current law. The testimony sums up the situation as follows:

In its 2015 decision in Carter v. Attorney General of Canada that struck down the prohibition on physician assisted dying, the Supreme court said that protecting “vulnerable” people (such as elders, women, LGBTQI and disabled folks, indigenous and racialized people) would require a “carefully designed system imposing stringent limits that are scrupulously monitored and enforced.” The language and implementation of Bill C-14, the medical assistance in dying or MAiD law have not met the Carter mandate.  Bill C-7 compounds this failure by rolling back protections beyond what is mandated by the Québec superior court in the Truchon c. procureur généraldecision, and before parliament has done the five-year review required in the MAiD statute. Far from being “an exceptional measure for exceptional cases” . . . , Canada’s program already has resulted in the deaths of nearly 20,000 disabled people, many of whom also have a terminal illness.

The TVNDY testimony highlighted the lack of independent living options impacting people with disabilities who request euthanasia, and pointed to concerns raised by the United Nations Special Rapporteur on the Rights of People with Disabilities:

In her 2019 End of mission statement, the United Nations Special Rapporteur on the Rights of People with Disabilities, Catalina Devandas Aguilar said she was “extremely concerned about the implementation of the legislation on medical assistance in dying” as well as the lack of options for independent living. In our series of webcasts “No Free Choice” TVNDY has documented numerous examples of persons who sought assisted death because they did not have the services and supports they needed to maintain a reasonable quality of life. . . . During the pandemic, disability rights activists have joined with racial and other social justice movements to declare that #NoBodyIsDisposable, yet 80% of deaths from COVID-19 have occurred in long-term care facilities.

Hasbrouck pointed out that the proposed amendments to the Canadian bill go beyond what would have been required by the recent Truchon decision, and make matters worse “before the five-year review mandated by Bill C-14 has been accomplished.”

Bill C-7 would reduce the number of witnesses required to sign the written request from two to one, and allow that person to be a care provider, thus setting the stage for an abusive attendant to coerce a person to ask for death, and then serve as the only witness to the request. Instead of clarifying what it means for someone’s natural death to be “reasonably foreseeable” — or scrapping the slippery and malleable concept altogether — Bill C-7 puts those folks on a fast-track to death.  The bill would eliminate the ten-day reflection period, as well as the requirement that the person be able to confirm their consent when the lethal injection is given; thereby creating a de facto advance directive. So even if a person must wait weeks to see if an antidepressant will relieve their emotional distress, or months to get access to palliative care, they can get the deadly dose right away.  That person with the abusive caregiver mentioned earlier; no one will even blink if they’re euthanized the same day they’re approved (as happened in Québec).

The testimony concludes:

Instead of rushing to pass over-reaching legislation to meet a court-imposed deadline in the midst of a pandemic, parliament should concentrate on performing a rigorous and balanced examination of the euthanasia program as a whole.  Parliament must determine whether the MAiD law . . .monitoring system is robust enough to detect problems, prevent the deaths of ineligible persons and impose consequences for those deaths. The five-year review could also answer the question whether it’s possible to enforce the MAiD law, let alone if it’s being enforced. Anything less would be a betrayal of the democratic process and the public trust.

To read the full testimony, please go to the TVNDY website here.

NDY Joined In PIPC Comment, and Filed Its Own, Regarding PCORI Principles

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At first, responding to the draft principles of the Patient-Centered Outcomes Research Institute (PCORI) seemed more complex than NDY could fit into our tight schedules. But the principles were in response to new language added to PCORI’s authorizing law:

. . . In addition to the relative health outcomes and clinical effectiveness, clinical and patient-centered outcomes shall include the potential burdens and economic impacts of the utilization of medical treatments, items, and services on different stakeholders and decision-makers respectively. . . .

“Potential burdens and economic impacts” on “different stakeholders”? That language raised concerns.

Fortunately, the Partnership to Improve Patient Care (PIPC) took on the task of developing a comprehensive public comment on the draft PCORI principles. NDY signed onto that, along with many other groups.

In addition, NDY submitted a short comment of our own, as follows:

Not Dead Yet is a national disability rights group whose focus includes protecting the right to receive desired life-sustaining care. Not Dead Yet has signed on to the comment submitted by the Partnership to Improve Patient Care, but we would like to submit a short additional comment.

A significant concern is the impetus behind the 2019 amendment to the PCORI reauthorization, which included the following ominous language:

“Research shall be designed, as appropriate, to take into account and capture the full range of clinical and patient-centered outcomes relevant to, and that meet the needs of, patients, clinicians, purchasers, and policy-makers in making informed health decisions. In addition to the relative health outcomes and clinical effectiveness, clinical and patient-centered outcomes shall include the potential burdens and economic impacts of the utilization of medical treatments, items, and services on different stakeholders and decision-makers respectively.”

The PCORI Principles further clarify that “PCORI is charged with considering the full range of outcomes that meet the needs of ‘clinicians, purchasers, and policy- makers in making informed health decisions,’ in addition to those that meet the needs of patients.”

While it is comforting that PCORI reaffirms “the limitation that PCORI ‘not develop or employ a dollars-per-quality adjusted life year (or similar measure that discounts the value of a life because of an individual’s disability) as a threshold to establish what type of health care is cost effective or recommended,’” the 2019 amendment muddies the waters at best.

The principles are very well word-smithed, but the health insurers and other stakeholders whose highest priority is increasing their economic bottom line are very good at word-smithing as well. The amendment is a loophole, a potentially dangerous loophole, slipped into the PCORI authorizing legislation.

PCORI will have to be vigilant to prevent various stakeholders from using PCORI to their economic benefit at the expense of patients. Given the longstanding cost-cutting pressures in the healthcare system, now increased by the COVID crisis, this will be no small task. We hope that you will seek the assistance of a broad array of disability organizations in your efforts.