Comments on the HHS Proposed Rule Implementing Section 504

November 13, 2023

Melanie Fontes Rainer, Director
Office of Civil Rights
U.S. Department of Health and Human Services
200 Independence Avenue, SW
Washington, DC 20201

Re: Notice of Proposed Rulemaking on Discrimination on the Basis of Disability in Health and Human Service Programs or Activities. Docket No: 2023-19149, RIN: 0945-AA15

Dear Director Fontes Rainer:

The Arc of the United States (The Arc) appreciates the opportunity to comment on and express our strong support for the proposed rule, Discrimination on the Basis of Disability in Health and Human Service Programs or Activities. The Arc is the largest national community-based organization advocating for people with intellectual and/or developmental disabilities (IDD) and their families. The Arc promotes and protects the human rights of people with IDD and actively supports their full inclusion and participation in the community throughout their lifetimes. The organization has long advocated that people with IDD must not experience disability-related discrimination in decisions to provide, delay, deny, or limit health care interventions or treatments. Our nearly 600 state and local chapters across the United States provide a wide range of services for people with IDD, including individual and systems advocacy, public education, family support, systems navigation, support coordination services, employment, housing, support groups, and recreation.

The Arc commends the Department of Health and Human Services (the Department) and the Office of Civil Rights for this proposed rule which updates, clarifies, and strengthens the implementing regulation for Section 504 of the Rehabilitation Act of 1973 (Section 504), the statute that prohibits discrimination against otherwise qualified individuals on the basis of disability in programs and activities that receive Federal financial assistance or are conducted by a Federal agency.

The Arc appreciates that the proposed rule establishes additional protections to ensure that an individual’s health and wellbeing are the only justifiable basis for making medical decisions. People with disabilities experience greater health disparities and barriers to quality health care compared to people without disabilities. This is especially true for people with IDD, who are systematically underserved by our healthcare system. Research suggests that although individuals with IDD are disproportionately high utilizers of healthcare services, they receive poorer quality of care, report poor experiences at hospitals, are less likely to receive preventative screenings and vaccinations, have poorer health outcomes, and shorter life expectancies. People with IDD experience higher rates of preventable health conditions and poorly-managed chronic conditions including, but not limited to: poor dental health, undiagnosed hearing and vision impairments, arthritis, obesity, diabetes, high blood pressure, and cardiovascular disease. Research shows people with IDD also lack access to adequate OB/GYN services – especially providers well-versed in using supported decision-making. For example, people with IDD have much lower rates of routine breast and cervical cancer screenings, higher breast cancer mortality rates, higher rates of medical complications during pregnancy, and higher rates of postpartum hospital admissions.

While there are many contributing factors to these disparities, discrimination and the stigma, exclusion, and devaluing the equal worth of people with IDD are critical problems faced by people with IDD. People with IDD and their family members frequently experience or observe discrimination from health care providers. They report that medical providers do not want to provide services to people with IDD, that they treat them differently, that they wrongly attribute health care issues to the fact that they have IDD, that appropriate treatment is not necessary due to their IDD, that they cannot see individuals with IDD because they do not have the expertise, and that they do not view people with IDD as reliable communicators of health issues. Many medical providers are not familiar with the support needs of individuals with IDD, refuse to allow a support person to accompany a patient with IDD during a procedure, and lack training in how to interact with someone using Alternative and Augmentative Communication (AAC) tools.

The most frequent concern expressed is that many people with IDD rely on Medicaid, which they access due to their disability, and many providers do not accept Medicaid. For example, many individuals with IDD and their families report significant challenges finding a dentist in their area that accepts Medicaid. While addressing that issue and others may be beyond the scope of the rulemaking, it remains an important concern regarding disability discrimination.

Another significant area of concern is that many mental health providers decline to treat people with IDD. More than a third of people with IDD have a co-occurring mental health condition, but they often experience barriers to accessing appropriate mental health services. This includes several assumptions that people with IDD cannot benefit from mental health services, that nonverbal individuals cannot participate in therapy, that multiple medications are needed to control the behavior of some people with IDD, and that mental health professionals do not have the competency to serve people with IDD. Many individuals with IDD are also improperly prescribed medications for mental health conditions despite not having any psychiatric diagnosis.

As above, fully addressing these complex issues may be beyond the scope of this rulemaking and complicate the issue of fully identifying discriminatory actions versus other complexities in the health care system. The addition of other examples in the rulemaking may be helpful to recipients for identifying where they need to modify their policies or practices and better understand the anti-discrimination provisions.

While our comments do not specifically address the section on medical equipment accessibility, we frequently hear about physical access challenges from our networks. For example, people with IDD, their families, and supporters report that:

  • Bathrooms within medical facilities often do not have automatically opening doors, adequate space to accommodate a wheelchair, or height-adjustable universal changing tables in family restrooms. Dental offices appear especially prone to inaccessible restrooms.
  • Waiting rooms often do not have accessible seating for individuals with chronic pain or obesity. Crowds, harsh lighting, and noise in waiting rooms can also pose challenges for individuals with autism who have sensory processing challenges.
  • Examination rooms frequently are too small to accommodate a wheelchair.
  • Physician offices often lack adequate patient transfer or lifting equipment such as Hoyer lifts. Patients often wait for extended periods of time for transfers, and some medical staff have limited knowledge on how to correctly use the equipment.
  • Medical equipment that people with IDD and their families frequently cite as inaccessible include: examination tables, dental chairs, eye examination equipment, scales, X-ray machines, mammography equipment, and other radiography equipment.
  • Parking lots at medical facilities frequently have too few accessible parking spots, especially van-accessible parking spots.
  • Many medical offices do not have automatically opening doors within buildings.
  • At-home diagnostic, therapeutic, and monitoring equipment such as heart monitors are also frequently inaccessible.

In addition, the Arc supports the Consortium for Constituents with Disabilities (CCD)’s recommendations that HHS, in collaboration with the Access Board, develop and issue standards for individuals with non-mobility disabilities, including sensory disabilities, intellectual and developmental disabilities, and individuals with multiple disabilities. For example, the introduced bipartisan Medical Device Nonvisual Accessibility Act (H.R. 1328) requires covered devices to meet nonvisual accessibility standards. If passed, HHS should incorporate similar requirements into 504 regulations. Although qualified individuals with any type of disability must be offered equal opportunity to access medical programs and services, regulated entities would benefit from specific technical guidance on how to fulfill their obligations and make their services accessible.

The proposed updated rules are necessary to ensure that people with IDD and other disabilities are not valued less than others; that children, parents, caregivers, foster parents, and prospective parents with disabilities do not face discrimination in a range of settings; and that websites, kiosks and mobile apps, weight scales, and exam tables used in medical settings are accessible to all patients.

The Arc also endorses the comprehensive comments submitted by CCD. The following comments will emphasize key points for people with IDD and provide additional examples where appropriate. Several of these examples were provided by people with IDD and their families though a communication we shared with our networks about the proposed rule in October 2023.

See continued comments at the resource link, below: 

Health & Hospital Corporation of Marion County v. Talevski

Filed: September 22, 2022

Court: U.S. Supreme Court

Overview: Amicus brief explaining the importance of individuals having the ability to sue state and local governments when their civil rights are violated under Medicaid and other public programs.

Excerpt: The linkage between the RA’s and the ADA’s antidiscrimination mandate and Medicaid provisions implementing that mandate is evidence that Congress intended both aspects of its disability-rights scheme to be privately enforceable. That conclusion is bolstered by the fact that Congress, when enacting the ACA, broadened Medicaid’s “entitlement” provisions by expanding the definition of “medical assistance.” Congress did so in direct response to judicial decisions narrowly construing that term in § 1983 suits brought by people with disabilities. Petitioners’ request that this Court abandon its longstanding holding that Spending Clause legislation can give rise to a private right of action under § 1983 would undermine Congress’s scheme for enforcing disability rights. People with disabilities, including children, regularly bring private lawsuits to enforce each of their independent, mutually reinforcing entitlements under the RA, the ADA, and Medicaid. Those lawsuits have vindicated important rights, providing access to life-saving therapies and everyday living support services close to one’s family and community. Absent a private right of action to enforce their Medicaid guarantees, enforcement of Medicaid would be left to the federal government, which may have few enforcement options other than reduction of States’ Medicaid funding. That may exacerbate rather than remedy States’ failure to comply with Medicaid’s requirements.

Case Documents

Amicus Brief

Supreme Court Opinion

Press Releases

Amicus Brief Filed in U.S. Supreme Court Case Emphasizes Harms to People with Disabilities

A Major Win for Disability Rights From SCOTUS

Related Media

Indy Star: Op/Ed: Treatment of patient at Indiana nursing home at center of U.S. Supreme Court case

Indy Star: Marion County agency wants SCOTUS to strip protections for millions of vulnerable Americans

Indy Star: Supreme Court denies Health & Hospital Corp.’s effort to block civil rights lawsuits

Yahoo News: Here’s why Nancy Pelosi, Todd Rokita, Biden administration care about Indiana nursing home

Disability Scoop: Supreme Court Case Could Sharply Limit Disability Rights

Disability Scoop: Supreme Court To Hear Case That Could Have Major Consequences For People With Disabilities

Vox: The nightmarish Supreme Court case that could gut Medicaid, explained

Vox: Medicaid appears likely to survive its latest encounter with the Supreme Court

MarketWatch: Supreme Court weighs 83 million Medicaid enrollees’ access to the courts

BU Today: The Most Consequential Supreme Court Case You Haven’t Heard Of

The 19th: Supreme Court case altering Medicaid is ‘an assault’ on older adults and people with disabilities, advocates warn

The 19th: Disability and aging advocates celebrate Supreme Court’s Talevski decision

Mother Jones: SCOTUS Just Upheld the Civil Rights of Millions of Disabled and Aging People

Wyfi: Supreme Court reinforces that Medicaid beneficiaries can sue states if their rights are violated

Axios: How nursing homes could face more patient lawsuits

 

Talk About Sexual Violence: A Conversation Guide for Patients With Disabilities

Every day, people with intellectual/developmental disabilities (IDD) are sexually abused.

Lesbian, gay, bisexual, transgender, and queer or questioning (LGBTQ) people also face high rates of sexual violence.

It is important that you talk openly with your medical providers about sexual abuse and abuse prevention.

This guide has suggestions to help you share your experiences with medical providers.

Prepared4ALL: Whole Community Inclusive Emergency Planning

This free course, created by AUCD, is designed to increase your knowledge about whole community emergency planning, including COVID-19 planning, as well as provide you the basic information needed to connect with your own local emergency planners, public health professionals, and community.

Talk About Sexual Violence Phase 3 Introduction

Now in its third year, the Talk About Sexual Violence project will build on its success by not only preparing health care professionals to have much-needed conversations about sexual violence with people with IDD, but to know how to use a supported decision-making lens that supports victim-centered approaches. This flyer gives an overview of the Phase 3 project focus and related information.

The Arc Maryland v. Baltimore City et al

State: Maryland

Filed: 2021

Court: U.S. District Court for the District of Maryland

Plaintiff: The Arc Maryland

Defendants: Baltimore City, Queen Anne’s County, Carroll County, Garrett County, Somerset County, Talbot County

Counsel: The Arc, Disability Rights Maryland, Brown & Barron LLC

Overview: The Arc Maryland filed a federal lawsuit alleging that six jurisdictions in Maryland, including Baltimore City, discriminate against people with IDD by denying them opportunities to access COVID-19 vaccinations inconsistent with the State’s Executive order and Vaccination Plan. This discrimination puts lives at stake and violates the Americans with Disabilities Act and Section 504 of the Rehabilitation Act.

While vaccination sites must offer vaccines to the public in accordance with Maryland’s state vaccination plan, the five counties and Baltimore City exclude individuals with IDD in their list of who is eligible, preventing those with IDD from accessing vaccinations.

It is well established that COVID-19-related fatality rates among people with IDD who test positive for COVID-19 are nearly three times greater than the mortality rates among the general population who are positive for the virus. People with IDD also face heightened risk because many rely on caregivers or direct support professionals who provide assistance with activities of daily living, for which social distancing is often not possible. Frequently, such caregivers serve multiple people raising risks of transmission. Despite advocacy from The Arc Maryland, people with IDD are not getting equal access to vaccines, compelling the need for the lawsuit.

Case Documents

Complaint

Motion for a Temporary Restraining Order

Related Media

Press Release: Vaccine Discrimination: Disability Advocacy Groups File Federal Lawsuit Alleging 6 Maryland Jurisdictions Discriminate in Vaccine Process

Baltimore Sun: Maryland organization that supports people with disabilities sues five counties and Baltimore City, alleging vaccine discrimination

The Maryland Daily Record: 6 Md. jurisdictions sued over vaccine eligibility for people with disabilities

The Garrett County Republican: Garrett County sued over vaccine info for people with disabilities

The Cumberland Times-News: Organization alleges vaccine discrimination

National Journal: Disability communities face barriers to COVID-19 vaccines

Baltimore Sun: Maryland disability rights group dismisses lawsuit against Baltimore City and three of five counties for alleged vaccine discrimination

Wisconsin Legislature v. Palm

State: Wisconsin

Filed: April 29, 2020

Court: Wisconsin Supreme Court

Overview: National and state disability and aging groups filed an amicus brief explaining the heightened risks to people with disabilities and older adults during the COVID-19 pandemic in a case challenging Wisconsin’s stay-at-home order. The brief argued that should the order be enjoined, more Wisconsinites will inevitably contract the virus and people with disabilities and older adults will experience life-threatening consequences at a far higher rate than the rest of the population. This will, in turn, overwhelm an already overburdened healthcare system (dealing with limited supplies of crucial equipment), which will disproportionately harm people with disabilities and older adults who face an exponentially higher risk of contracting the virus in a life-threatening capacity that requires hospitalization.

Excerpt: “The spread of COVID-19 is especially dangerous to people with disabilities and older adults for several reasons. First, for health-related reasons, people with disabilities and older adults are at greater risk of serious complications and death if exposed to the virus. Second, they are more likely than other adults to live in congregate settings, such as group homes or nursing homes where COVID-19 rates of infection and fatality have been disproportionately high and will only worsen if the Order is enjoined. Third, people with disabilities and older adults, whether living in congregate or community-based settings, often require assistance from a workforce that cannot maintain social distance while supporting them in their daily lives. The nationwide shortage of personal protective equipment (“PPE”) puts both staff and those they are supporting at higher risk of contracting the virus, which will only be exacerbated if the Order is enjoined. Fourth, people with disabilities and older adults are at greater risk of being denied life-saving medical treatment if an uncontrolled outbreak forces rationing of medical care, due to the likelihood of discrimination. Finally, people with disabilities and older adults are more likely to live in poverty and experience homelessness, which is an additional risk factor for contracting COVID-19. For all these reasons, risks to the lives of persons with disabilities and older adults would only be heightened if this Court were to enjoin the State’s efforts to reduce the spread of COVID-19.”

Case Documents

Amicus Brief

Related Media

Press Release: Over 30 Groups File Amicus Brief in Wisconsin Regarding Heightened COVID-19 Risks to People with Disabilities & Older Adults

Milwaukee Journal Sentinal:
Wisconsin Supreme Court strikes down Wisconsin’s stay-at-home order that closed businesses to limit spread of coronavirus

New York Times: Wisconsin Supreme Court Strikes Down Stay-at-Home Order

Achieving Healthier Futures One Step at a Time

The purpose of this toolkit is to familiarize the user with intellectual and developmental disabilities (IDD). It provides communication techniques so you can successfully include people with IDD in community programs and activities, including a healthy living program. These are suggested techniques particularly helpful for those who don’t have any experience working with individuals who have IDD.