NDY Public Comment on HHS/OCR Proposed Section 504 Healthcare Regulations

Not Dead Yet, The Resistance

November 10, 2023

The Honorable Xavier Becerra Secretary
U.S. Department of Health and Human Services, Office for Civil Rights
Attention: Disability NPRM, RIN 0945–AA15
Hubert H. Humphrey Building, Room 509F
200 Independence Avenue SW
Washington, DC 20201

RE: DISCRIMINATION ON THE BIAS OF DISABILITY IN HEALTH AND HUMAN SERVICES PROGRAMS OR ACTIVITIES – PROPOSED RULE

DOCKET NUMBER HHS-OCR-2023-0013

Dear Secretary Becerra:

Not Dead Yet, a national disability rights organization focused on combatting healthcare discrimination and “better dead than disabled” biases, is pleased to respond to the Health and Human Services (HHS) September 14, 2023, request for comment on the proposed rule to update and amend its Section 504 regulations. (1)

Equity in health care has become a focal point for the disability rights movement in a way it might not have been in earlier years. From infancy to old age, health care is a basic need of all people. Those of us who have disabilities cannot achieve equality in the community or be fully free to pursue our destinies if we face virulent prejudices and devaluation when we are in medical settings. As HHS General Counsel Samuel Bagenstos has said, “Freedom from disability-based discrimination is a civil right – and in health and human services programs, it can be a matter of life and death.” (2)

We applaud the decision by HHS and its Office for Civil Rights to release a proposed rule that explicitly prohibits discrimination in medical treatment based on disability in government funded programs and removes other barriers to people with disabilities having equal access to health care. The rule will do much to help people with disabilities achieve equitable and effective care in our complicated and hard-to-navigate healthcare system. It is indeed our hope that the rule will have a ripple effect that helps members of all other marginalized communities faced with healthcare disparities.

Our response will focus on Sections 84.56, 84.57 and, briefly, Sections 84.68 and 84.76. We strongly support the elimination of all physical and communication barriers as vital to quality health care, but we will defer to others to comment on the specifics of those sections.

SECTION 84.56

Medical Treatment Question 1: We recognize that the line between disabilities may in some cases be more difficult to draw than in these examples, and we welcome comment on the best way of articulating the relevant distinctions.

As the National Council on Disability (NCD) has stated in its report on medical futility and disability bias, “Physicians predominately view disability as connected to disease, and diseases are to be cured or avoided; on the whole, providers fail to see disability as a natural part of life’s experience.” (3) Providers are often quick to blur the line between a person’s disability and the condition they are seeking treatment for and to allow one to unnecessarily and negatively influence the treatment of the other. For example, early in the pandemic, aggressive treatment was frequently not given to older adults with COVID-19 due to the erroneous assumption that the virus was inevitably fatal in older people due to chronic conditions and disabilities that may accompany aging. (4) Many lives that could have been saved were undoubtedly lost this way.

In cases of illness or injury so severe a person needs a respirator and tube feeding, doctors sometimes recommend the withdrawal of such life support when it is still unclear if the person can survive but it is thought survival will bring with it significant residual disabilities. Dr. Joseph Fins, an expert in regaining consciousness after brain injury, has stated, “It’s glossing over all the unknowns for the sake of a quicker, cleaner solution. It’s wrong to be so uniformly fatalistic so early on, especially with all the data emerging about the prospects for later-stage recovery.” (5) It is also discriminatory. The prohibitions of Section 84.56 must be understood by providers to apply both in cases of existing disabilities and cases where the prognosis includes disability. We hope that 84.56 (b)(1)(iii) and (b) (2) accomplish this, but absolute clarity is essential.

As HHS has indicated in its discussion of the proposed rule, biases about the impact disabilities have on “quality of life” are endemic among medical professionals. One manifestation of these discriminatory attitudes is the failure to treat suicidal depression in people with disabilities, including older individuals, although other people with suicide ideation are routinely offered suicide prevention services.

As Matt Valliere of the Patients Rights Action Fund stated in his March 11, 2022 memo to the Department, “Assisted suicide promotes discriminatory practice among physicians and mental health professionals. Many are making qualitative judgments on whether a person’s disabling condition is advanced enough to warrant suicide, in their personal subjective opinion, giving the means of suicide to some and denying it to others, based on how advanced their disabling condition(s) has(ve) become.” Equal suicide prevention should especially be a concern when disabilities are acquired as a result of a life threatening or terminal condition.

Moreover, people who have disabilities that require medical management to prevent them from becoming fatal have sometimes reported that doctors have openly questioned the value of their continued survival. This type of discrimination has been documented in individual affidavits and underlies a federal lawsuit that two disabled Californians, joined by disability advocacy groups, have brought challenging the California Assisted Suicide Law as unconstitutional and in violation of the Americans with Disabilities Act and Section 504. (6)

Apart from suicide, there is another potentially deadly consequence from failing to address depression in a person because a health care provider thinks it is the logical and untreatable response to permanent disability. The person may become so demoralized she loses interest in preventive healthcare. This could lead to a death from a condition that would be highly treatable if caught early.

Yes, there are some situations where a person’s underlying disability may require that the treatment for another condition differs from the usual treatment or its method of delivery may need to be altered. However, this should be the exception rather than the rule. The burden of proof should be on the provider to justify the difference.

In light of the many ways that the healthcare system reflects a view that people with disabilities are worth-less, we recommend that the following be added to the specific prohibitions of Section 84.56 (b)(1):

(iv) the belief that the extra accommodation, expense or time required for treatment related to the individual’s disability is not justified.

Medical Treatment Question 2: The Department seeks comment on other examples of the discriminatory provision of medical treatment to people with disabilities.

The examples the Department has included in its summary are apt. We are especially appreciative of the societal insight the Department has shown in providing the example of a patient with Alzheimer’s disease who has pneumonia and needs ventilator support and whose doctor, despite her spouse’s request that she be given such medically indicated support, is denying her a ventilator due to the belief that her quality of life is poor.

We would also like to offer a few reported actual examples, including references, of disability-based discrimination in medical treatment in violation of proposed Section 84.56.

A boy is born prematurely and received excellent care until it was learned he had trisomy 18. His parents were pressured by the doctor to let him die because he would otherwise have a brief and unresponsive life of pain and suffering. An internet search by the boy’s sister revealed that many people with Trisomy 18 live into adulthood and do quite well. When the parent brought this information to the doctor, he admitted that he had misled them since he felt the boy would use up resources while never contributing to society. The parents rightly pointed out that he had sought to bias their decision-making based on his own prejudiced view of life with a disability. (7)

A man had been fascinated by suicide ever since a relative had taken her own life. He thought of death as the default option. He made at least one suicide attempt and at other times behaved with reckless disregard for his life. He was living in a state that had legalized assisted suicide when he developed cancer. Despite his history of suicide ideation predating his diagnosis and despite the supposed safeguards of the state law, two doctors deemed him eligible for a lethal prescription. He took the drugs and died. (8)

Haleigh Poutre was a young girl who almost lost her life when her court appointed guardian asked the court that she be removed from all life support, including nutrition and hydration, only eight days after she became comatose allegedly resulting from a beating by her stepfather. The request was endorsed by her doctors who deemed her nearly “brain dead.” The court’s decision was slowed down by the objections of her stepfather, but the request was eventually granted. Then the child woke up. Haleigh was adopted by a loving family and is now an adult with residual disabilities who is engaged in the community. The case was inaccurately depicted in the media as an “end-of-life” case. (9) Instead, it was a case of medical bias and an attempt to prematurely withdraw life sustaining care.

Medical Treatment Question 3: The Department seeks comment, including from health care professionals and people with disabilities, on the examples described in this section, whether additional examples are needed, and on the appropriate balance between prohibiting discriminatory conduct and ensuring legitimate professional judgments.

We are aware that one size does not fit all when it comes to medical treatment. A provider can and should exercise professional judgment. A person seeks medical treatment to get the benefit of a provider’s professional judgment. We see no inherent conflict between allowing a provider to exercise valid professional judgment and prohibiting a provider from discriminating based on prejudicial or biased attitudes about disability. However, the proposed rule should strongly emphasize that treatment being harder or more time consuming or expensive because of disability does not add up to “impossible to treat” or “justified not to treat.”

Exceptions should not be loopholes. We do have some concern about the open-ended nature of a phrase like “ease of administration of the treatment itself”. For example, inaccessible medical equipment or the need for additional staff support related to the treatment should not trigger this exception. Reasonable accommodations are still required. Moreover, a healthcare industry that reported over $41 billion in profits in 2022 should not be permitted to delay acquisition of accessible equipment and facilities. Perhaps there should be language more specifically describing the types of situations involved in such an exception and potential alternatives for treatment.

Medical Treatment Question 4: The Department seeks comment from all stakeholders on the risks and benefits of the proposed regulatory choices that the Department has put forth in this section.

As we have said at the outset, we are extremely grateful that HHS has released the proposed rule and believe it will do much to improve equal access to healthcare.

We applaud the fact that Section 84.56 seeks to prevent discriminatory medical “steering” while recognizing the right of an individual to refuse to consent to a treatment. The right to refuse treatment is key to personal autonomy and bodily integrity. There is a sad history of disabled people being forced into treatment they did not want and was not in their best interest.

It gets tricky though when a surrogate is making irreversible decisions for a person who cannot at that time make them for herself. Some authorized representatives try very hard to effectuate what would be a person’s wishes, but this is not invariably so. The Supreme Court tellingly wrote in Cruzan that, even where family members are present, “[t]here will, of course, be some unfortunate situations in which family members will not act to protect a patient…there is no automatic assurance that the view of close family members will necessarily be the same as the patient’s would have been had she been confronted with the prospect of her situation while competent.”

Sadly, it is not uncommon for Not Dead Yet to receive telephone calls from a hospitalized adult’s relatives who are desperate to prevent the withholding of treatment based on a surrogate’s or provider’s decision that the caller believes is inconsistent with the adult’s expressed wishes. In such scenarios, relatives are often unable to secure legal assistance in time to continue treatment pending further consideration.

Another issue is the type of surrogate or substitute decision maker. Adults often appoint healthcare proxies or otherwise clearly indicate their preferred and trusted substitute decision maker if needed. That appointed person’s decisions on behalf of the individual should be given great weight. However, when a surrogate is designated only by operation of law rather than the individual themself, decisions by that surrogate may warrant additional scrutiny. It would be helpful if the Department acknowledged this distinction. At a minimum, state laws and regulations could take this distinction into account.

Other situations involve parental refusal to consent to life saving treatment or even the delivery of food and water to a child with a disability, including a newborn. These decisions are often made when the parents are under great stress, have incomplete and biased information, are given “options” and are being pressured to act quickly. It is generally recognized that civil rights begin at birth. Parents do have the right to make myriad decisions including medical ones about their children, but they do not have an unqualified right to let them die. There have been cases, for example, where parents have been prohibited from denying medically indicated care to a child for religious reasons. As was argued in the amicus brief filed by disability activists in Disability Rights Wisconsin v. University of Wisconsin Hospital and Clinics, et al, “limits on parents’ and guardians’ decision-making authority are no less applicable when the child has a significant disability than when the child has only minor or no disabilities.” (11)

We are aware of the unfortunate decision in Bowen. However, the Child Abuse Prevention and Treatment Act (CAPTA) does reflect an attempt by the federal government to work with the states to protect infants with disabilities who have life-threatening conditions from being denied medically indicated treatment. (12)

There should be a duty placed on HHS recipients to provide life-saving treatment to an infant or older child with a disability despite a parent’s refusal to consent, if the withholding of treatment would be prohibited if the patient had the same life-threatening conditions but without a disability.

Consistent with the Cruzan decision, we also believe caveats should be placed in Section 84.56 (c)(2) as follows: (iii) Nothing in this section precludes federal or state law from limiting the power of an authorized representative including a parent to refuse life sustaining care for an individual. Moreover, an authorized representative’s refusal of nutrition and hydration for an individual shall not be effective if the individual, regardless of competency, indicates it is their choice to receive such nutrition and hydration.

SECTION 84.57

Value Assessment Methods Question 1: The Department seeks comments on how value assessment tools and methods may provide unequal opportunities to individuals with disabilities.

Disability-biased value assessment methods are based on the bigoted premise that life with a disability has lesser value than life without a disability. They are inherently discriminatory and are in direct conflict with the concept of equal rights. An example of a value assessment method that overtly devalues people with disabilities is one that uses a quality adjusted life years (QALY) calculation.

As the NCD has written about one of the fundamental flaws of the QALY, “the conflation of life extension and quality of life improvement benefits into a single number forces people with disabilities into a cruel trap: picking whether they would rather live longer or have improved quality of life, when both are entirely feasible in a society willing to invest sufficient resources.” (13) In our view, QALYs add a false appearance of scientific legitimacy to prevailing social biases and “quality of life” judgments.

The Department is correct in explicitly prohibiting their use under Section 84.57, and we believe that they are prohibited under Section 84.56 as well. We are opposed to both the formal use of such value assessment methods in treatment decisions and the application of the concepts behind them in treatment decisions. We would also note that the typical person with a disability is a member of one or more other devalued groups. Thus, we oppose value assessment methods or stand-ins for value assessment methods that use any immutable personal characteristics or other suspect classifications.

We also believe that, in today’s complex, multi-layered and interconnected corporate healthcare system, the reach of the section should be extended to payors receiving federal funds.

Value Assessment Methods Question 2: The Department seeks comment on other types of disability discrimination in value assessment not already specifically addressed within the proposed rulemaking.

Discrimination occurs when a method uses disability status to determine who gets a drug which is effective regardless of how disabled a person is. For example, an expensive new drug greatly slows the progression of a neuro-muscular disease but will not reverse the disability a person already has. A value assessment method that would give the drug to an ambulatory person with the condition but not to a non-ambulatory person with diminished lung capacity with the same condition is discriminatory. It should make no difference that the second person has the same condition but experiences more resulting impairments or may need physical assistance.

Value Assessment Methods Question 3: The proposed value assessment provision applies specifically to contexts in which eligibility, referral for, or provision or withdrawal of an aid, benefit, or service is being determined. The preamble discussion of the provision clarifies that the provision would not apply to academic research alone. However, the Department seeks comment on the extent to which, despite this intended specificity, the provision would have a chilling effect on academic research.

We are opposed to any value assessment method that directly or indirectly discounts the value of life extension based on disability. We are not opposed to value assessment methods that compare equally effective treatments and place higher value, by way of example, on the one with the least side effects or the one that is the least invasive. There is a difference between using disability biases to deny an individual treatment and taking valid side effects and risk considerations into account when evaluating treatments. For example, if treatment A and treatment B work equally well and treatment A can be delivered by injection and treatment B is delivered by IV drip, treatment A can be seen to be more advantageous. We agree that Section 84.57 should not chill research into value assessment methods that do not devalue groups of people but clarity is imperative in light of the history and use of value assessment methods.

SECTION 84.68

We agree with the Disability Rights Education and Defense Fund that “solely by reason of disability” should be explicitly defined to mean a direct or demonstrable causal relationship between the discrimination being alleged and the person’s disability. (14) This would minimize the number of lawsuits brought challenging the scope of the regulation.

SECTION 84.76

We strongly agree with the critical importance of the integration mandate and particularly appreciate the following NPRM statement: “[A] hospital or acute care provider that routinely discharges persons with serious health disabilities into nursing homes due to inadequate discharge planning procedures that fail to assess patients for home-based supportive services and refer them to community-based providers, might be in violation of section 504’s integration mandate, based on discharge practices that result in serious risk of unnecessary placement within an institution or other segregated setting.”

An actual example: Two years ago, after a short hospitalization, hospital staff refused to discharge a Not Dead Yet staff member’s relative to their accessible home, arguing and pressuring him repeatedly to go to a nursing home and threatening to deny home health therapy if he rejected their plan. His only option to avoid an unneeded nursing facility was to discharge home “against medical advice.” Despite these hospital threats, home health assessors came and determined that he was fine at home where he received brief physical therapy and completed his recovery.

Not Dead Yet’s CEO and Director of Minority Outreach have both worked to address the critical need for long term services and supports in people’s homes and have been arrested and jailed to pressure policy makers concerning this civil rights issue. Enforcement is needed to effectuate the right to community integration.

Thank you, again, for undertaking this important rulemaking to clarify and implement Section 504 in the context of healthcare. Please contact us with any questions you may have concerning our comments.

Sincerely,

Diane Coleman

Diane Coleman, JD, President/CEO

Lisa Blumberg

Lisa Blumberg, JD, Consultant

ENDNOTES

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