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: