On March 28, the Department of Health and Human Services (HHS) Office for Civil Rights (OCR) issued a guidance bulletin stating that health care providers are prohibited from discriminating against people with disabilities based on stereotypes, assessments of quality of life, or judgement about their relative worth even during a pandemic. The guidance also says that treatment decisions should be based on an individual assessment. The Arc has filed three complaints with OCR in response to treatment rationing plans in Washington, Alabama, and Tennessee.
On March 6, the Food and Drug Administration (FDA) published a final rule prohibiting electrical stimulation devices (ESDs). These devices have inflicted painful abuse on residents of the Judge Rotenberg Educational Center in Canton, Massachusetts for decades. The rule takes effect on April 6, and all individuals currently subject to the devices must be transitioned off by September 2. Read The Arc’s statement.
On January 16, Senators Bob Casey (D-PA), Amy Klobuchar (D-MN), and Kirsten Gillibrand (D-NY) introduced the Accessible Voting Act (S.3206). This bill establishes an Office of Accessibility within the Election Assistance Commission to oversee efforts to expand voter accessibility, establishes a new voter accessibility website, and provides additional assistance to states to increase accessibility in the voting process. Additionally, the bill ensures individuals will not lose their right to vote solely because they are placed under guardianship. Learn more. The Arc supports this legislation.
On November 6, the National Council on Disability (NCD) released a report titled “Quality-Adjusted Life Years and the Devaluation of Life with Disability.” The report details the use of quality-adjusted life years (QALYs) in the evaluation of treatment coverage. QALYs are based on the premise that the value of one year of the life of a person with a disability is less than the value of one year of the life of a person without a disability. The report recommends, among other things, prohibiting the use of QALYs in Medicare and Medicaid.
The National Council on Disability (NCD) recently released “Genetic Testing and the Rush to Perfection,” the third report in a series on Bioethics and Disability. This report examines the range of scientific, commercial, professional, and social factors that converge around prenatal genetic testing and their effect on the lives of people with disabilities; and it provides an update on the interaction between genetic testing and employment discrimination.
On September 11, the House Committee on Oversight and Reform’s Subcommittee on Civil Rights and Civil Liberties held a hearing on “The Administration’s Apparent Revocation of Medical Deferred Action for Critically Ill Children.” This policy allowed some immigrants to with serious medical needs and their family members who care for them to stay in the country while receiving life-saving treatment. The Arc is opposed to ending this policy. Visit the Committee website for more information or to access video on the of the hearing. Read The Arc’s statement on this policy here, and see the letter of record from disability advocates, including The Arc, here.
On September 11, The House Committee on Oversight and Reform’s Subcommittee on Civil Rights and Civil Liberties will hold a hearing on “The Administration’s Apparent Revocation of Medical Deferred Action for Critically Ill Children.” This policy allowed some immigrants to with serious medical needs and their family members who care for them to stay in the country while receiving life-saving treatment. The Arc is opposed to ending this policy. Visit the Committee website for more information or to access live video on the of the hearing.
In June, the Office for Civil Rights (OCR) of the Department of Health and Human Services (HHS) issued a new proposed rule that weakens the current interpretation of Section 1557 of the Affordable Care Act (ACA). Section 1557 prohibits health programs or activities that get federal funds from discriminating based on race, color, national origin, age, disability, or sex. The proposed rule would diminish the ACA’s anti-discrimination protections for people with disabilities. To learn more about how the proposed rule impacts people with disabilities, read The Arc’s blog post and this fact sheet from the Consortium for Citizens with Disabilities (CCD) on the topic. CCD has also provided a comment template with instructions for submitting comments. Comments are due on August 13.
Last week, in conjunction with the 29th anniversary of the signing of the Americans with Disabilities Act (ADA), Representatives Donald McEachin (D-VA) and Jim Langevin (D-RI) and Senators Tammy Duckworth (D-IL) and Bob Casey (D-PA) re-introduced the Disabled Access Credit Expansion Act (H.R.4045/S.2290). This bill will double the Disabled Access Credit (DAC) and increase the number of businesses eligible for it. The DAC is a tax credit for small businesses that make renovations to make their facilities accessible. Additionally, the bill increases funding for the voluntary ADA Mediation Program in the Department of Justice and requires data collection and reporting on the types of calls received by the ADA Information Line.
On May 24, the Department of Health and Human Services (HHS) released an advance copy of a proposed rule to weaken its regulations implementing Section 1557 of the Affordable Care Act (ACA). Section 1557 prohibits discrimination on the basis of race, color, national origin, sex, age, or disability in health programs and activities receiving federal financial assistance. The proposed rule would narrow protections for all people experiencing discrimination under the law, eliminate protections for LGBTQ people, and roll back protections for people with limited English proficiency, among other impacts. The Arc is reviewing the proposed rule and will provide further analysis.