Guthrey v. Alta California Regional Center

Filed: July 11, 2024

Court: U.S. Circuit Court of Appeals for the Ninth Circuit

Overview: Amicus brief arguing that California regional centers and their vendors, which coordinate and deliver services to people with intellectual and developmental disabilities, are places of public accommodation under the Americans with Disabilities Act.

Excerpt: “Because they have physical buildings at which and from which they provide services to the public, California Regional Centers and their vendors (including Defendants/Appellees) are all places of public accommodation under Title III of the ADA. . .and the services they provide individuals like Plaintiffs/Appellants are covered by that statute. . .This Circuit’s requirement that discrimination challenged under Title III have a ‘nexus’ to a physical building simply requires a connection to that building; it does not require that the discrimination have occurred on the physical premises. The district court’s opinion requiring a showing that the challenged services were provided at Defendants’ offices. . . improperly restricted the reach of Title III, contrary to the plain language of the statute, its legislative history, and this Circuit’s precedent. The district court also improperly required that plaintiffs establish a violation of the ADA as a prerequisite to a claim under either Section 504 or the Unruh Act. These holdings are completely unsupported, as the three statutes – while all addressing disability discrimination – do so in different contexts with, as a result, different required factual predicates.  Ultimately, by eliminating all recourse for individuals with IDD to challenge discrimination by Regional Centers and their vendors, the district court’s decision threatens to undermine years of progress through both the ADA and California’s Lanterman Act.”

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City of Grants Pass, Oregon v. Johnson

Filed: April 3, 2024

Court: U.S. Supreme Court

Overview: Amicus brief arguing that the Eighth Amendment ban on cruel and unusual punishment prohibits cities from criminalizing conduct associated with being unhoused.

Excerpt: “People with disabilities face unique challenges and deep-rooted stigmas that increase their risk for homelessness. Less than 5% of housing in the United States is accessible for moderate mobility disabilities, and less than 1% is accessible for wheelchair use. Housing costs are prohibitive for many disabled people who rely on public assistance for basic costs of living—the average cost of a one-bedroom apartment in the United States exceeds the maximum monthly Supplemental Security Income a person can receive. Moreover, widespread housing discrimination on the basis of disability further compounds the risk of homelessness. The Ordinances’ impact on homeless people with disabilities highlights how grossly out of proportion the punishments they impose are to the severity of the offense. Simply put, criminalizing the involuntary conduct of being a homeless person without a place to sleep—in a city with no public shelters—is anathema to the decency standards of any civilized society.”

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Robertson v. District of Columbia

Filed: 2024

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

Plaintiffs: Parents and guardians of students with disabilities in the District and The Arc

Counsel: The Arc, Washington Lawyers’ Committee for Civil Rights and Urban Affairs, Children’s Law Center, McDermott Will & Emery

Overview: Parents and guardians of children with disabilities living in D.C., along with The Arc of the United States, filed a class action lawsuit against D.C.’s Office of the State Superintendent for Education for failing to provide safe, reliable and effective transportation to and from schools for children with disabilities, thereby denying students equal access to their education and unnecessarily segregating them from their peers.

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Food and Drug Administration v. Alliance for Hippocratic Medicine

Filed: January 30, 2024

Court: U.S. Supreme Court

Overview: Amicus brief arguing that it is not the role of courts to substitute their evaluation of drug safety and effectiveness in place of the FDA’s expert determinations.

Excerpt: “The Fifth Circuit’s substituting its evaluation of drug safety and effectiveness for FDA’s expert determinations affects far more than the modifications to the conditions of use for the single drug at issue here. Patients and their providers depend on FDA’s determinations about safety and effectiveness and expect drugs to be available according to the terms of the FDA approval, including supplemental approval. Providers rely on FDA’s expertise-based approval of drug uses in making treatment plans, and patients depend on being able to take the drugs as prescribed by their providers. The Fifth Circuit’s ruling broadly jeopardizes the reliability of FDA’s original approvals of drugs, and the agency’s approvals of modifications to the conditions of their use. It is effectively a roadmap for other litigants seeking to overturn drug approvals or conditions of use they disfavor—whether those changes expand (as was the case here) or restrict how the drug can be used. If approved drugs or modifications to conditions of use can be so readily enjoined despite FDA’s scientific assessments, the resulting uncertainty would jeopardize patient access to drugs, particularly in cases where FDA has expanded the approved uses of a drug to cover new diseases or conditions. It could also threaten patient safety, as FDA approves modifications to conditions of use where it determines they are needed to protect patients from risks of harm. Finally, the Fifth Circuit’s decision would impair the development of new treatments, as uncertainty disincentivizes pharmaceutical manufacturers, clinicians, and patients from undertaking time-and resource-intensive clinical trials to study new drugs and new indications for approved drugs.”

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FDA v. Alliance for Hippocratic Medicine Amicus Brief

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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: 

Restrained and Secluded: How a Change in Perspective for Students With Disabilities and Simple Science Can Change Everything

Students with disabilities are more likely to be restrained, secluded, suspended, expelled, and subjected to corporal punishment. In the name of behavior, children with disabilities, Black and brown children, and children with a trauma history are often misunderstood. Outdated behavioral management approaches are not working for the children who need our help the most. Being the parent or caregiver of a misunderstood child can be difficult. We are often blamed and shamed, but there is hope. A bit of neuroscience and a new lens on behavior can reduce and eliminate punitive practices and lead to endless potential.

Speaker Bio: Guy Stephens lives in Southern Maryland with his wife and two amazing children. He is the founder and Executive Director of the nonprofit Alliance Against Seclusion and Restraint (AASR). AASR is a community of over 25,000 parents, self-advocates, teachers, school administrators, paraprofessionals, attorneys, related service providers, and others working together to influence change in supporting children whose behaviors are often misunderstood. He has presented at conferences and events across North America and guest lectures for undergraduate and graduate courses as a national expert on the issue of restraint and seclusion.

Download presentation here.

Download transcript here.

For further questions, please email school@thearc.org.

Jacobs v. Salt Lake City School District

Filed: September 29, 2023

Court: Tenth Circuit Court of Appeals

Overview: Amicus brief explaining that children with disabilities must have access to education in their neighborhood schools.

Excerpt: “The ruling below is flatly inconsistent with the IDEA and case law interpreting its least restrictive environment (LRE) mandate. Congress has made clear through IDEA (in all its iterations over the past five decades) that one of its overriding priorities was giving students with disabilities access to the general education curriculum and education in the regular classroom to the maximum extent possible. Congress enacted IDEA, an “ambitious piece of legislation,” in response to the serious problem that a “majority of handicapped children in the United States were either totally excluded from schools or [were] sitting idly in regular classrooms awaiting the time when they were old enough to drop out.” Endrew F. v. Douglas Cnty. Sch. Dist. RE-1, 580 U.S. 386, 397 (2017) (internal quotation marks and citations omitted)… IDEA’s mandates are not empty aspirations: decades of scientifically based research demonstrates that children with disabilities achieve considerably more educational benefit from placement in general education classes with access to the general education curriculum through supplementary aids and services than from placement in special education classrooms or schools with limited access or no access to their age-appropriate non-disabled peers or general education curriculum.”

Case Documents

Jacobs v. Salt Lake City School District Amicus Brief

Ybarra v. Gittere et. al.

Filed: August 29, 2023

Court: Ninth Circuit Court of Appeals

Overview: Amicus brief in a death penalty case filed to prevent a man with an intellectual disability from facing execution.

Excerpt: “Relying on stereotypes or lay assumptions about what a person with ID “must” look like, or what people with ID “cannot” do, rather than applying clinical standards for assessment and diagnosis may result in an unreasonable (and invalid) interpretation of the diagnostic facts in an Atkins evaluation. See, e.g., Brumfield v. Cain, 576 U.S. 305, 312-320 (2015) (finding an unreasonable interpretation of the facts where a state court abandoned clinical standards in determining that an individual was ineligible for an Atkins adjudication). In this context, a clinically invalid assessment risks execution of an individual with ID, a clear Constitutional violation.”

Case Documents

Ybarra v. Gittere et. al. Amicus Brief

Griffith v. El Paso County Colorado

Filed: August 25, 2023

Court: Tenth Circuit Court of Appeals

Overview: Amicus brief filed explaining that people with disabilities, including people who identify as having gender dysphoria, are not required to show that their exact disability is well-settled across the courts and are entitled to compensatory damages for emotional distress under Title II of the ADA.

Excerpt: “[T]he court erroneously posited that a defendant can be shielded from liability for damages for intentional discrimination based on a contention that one of the elements of the plaintiff’s claim—here, whether the Plaintiff was legally disabled—was unsettled. If permitted to stand, the district court’s analysis will allow entities free rein to discriminate unless and until all courts agree a condition is a covered disability. This will severely weaken enforcement of the ADA… In Cummings, the Supreme Court addressed the very limited question of whether emotional distress damages are available under Section 504 and Section 1557 of the Patient Protection and Affordable Care Act, 42 U.S.C. § 18116 (“Section 1557″)… The expansion of Cummings’ bar on emotional distress damages to Title II of the ADA would eliminate an essential remedy that Congress intended to make available to victims of disability discrimination when the ADA was enacted.”

Case Documents

Griffith v. El Paso County Colorado Amicus Brief

Acheson Hotels, LLC v. Laufer

Filed: August 9, 2023

Court: Supreme Court of the United States

Overview: Amicus brief filed in case before the Supreme Court that will decide whether testers – disabled people who investigate compliance with the Americans with Disabilities Act (ADA) – have the ability to sue businesses for discrimination when their rights under that law are violated.

Excerpt: “Under the Reservation Rule, information about hotel accessibility features must be posted on hotel websites. 28 C.F.R. § 36.302(e)(1). Unfortunately, despite the 1990 enactment of the ADA and 2010 promulgation of the Reservation Rule, people with disabilities regularly encounter inaccurate or incomplete information, or no information at all, when they attempt to ascertain a hotel’s accessibility features online. The message these individuals receive during these encounters is that their patronage is less valuable and desirable than the patronage of nondisabled guests because the public accommodation did not consider disabled people among its potential customers…By making the apparently advantageous business decision to share information about its hotels with a much larger audience over the Internet, while simultaneously failing to provide the accessibility information that disabled members of that audience need in order to be treated equally…Acheson is discriminating against every disabled person who encounters that noncompliant online reservations service. Each of these individuals— interacting with this noncompliant reservations service — could suffer their own concrete and particularized injury: the dignitary harm of disregard and erasure that Title III was enacted to prevent.”

Case Documents

Disability Antidiscrimination Law Scholars Amicus Brief

Disability Rights Groups Amicus Brief

Press Release

Amicus Brief Filed in U.S. Supreme Court Case Emphasizes Importance of Testers to ADA Enforcement

Related Media

Disability Scoop: Disability Advocates Urge Supreme Court Not to Limit ADA Protections

USA Today: ‘Sleeping in my car.’ This Supreme Court Case Could Change How Disabled Americans Book Hotel Rooms

Slate: The Americans With Disabilities Act Is Under Threat at the Supreme Court