Healthcare Access

Letter From the Disability Community to CDC Director Rochelle Walensky

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January 13, 2022

Dear Director Walensky,

The undersigned organizations write in response to your comments on Friday, January 7th, 2022.

Together we represent millions of people with disabilities, patients, and people with chronic illnesses across the United States, and we are extremely concerned by your comments. People with disabilities and pre-existing conditions have been disproportionately killed by COVID-19. This is particularly true for those who live in congregate settings. Each of these deaths is a devastating loss to families, friends and to our broader communities. Your comments about the results of a research study referred to the fact that a disproportionate number of deaths due to COVID-19 occurred among "people who were unwell to begin with" as "encouraging news". Weunderstand you were speaking about a research study and that segments of your remarks were cut by ABC from the aired interview. Your full remarks were subsequently released, and our concerns remain. [...]

DREDF Urges the Biden Administration to Rescind Georgia’s Section 1332 Waiver

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January 12, 2022
On January 7, 2022, DREDF provided comment on Georgia's approved Section 1332 Waiver, which permits the State to exit HealthCare.gov—a central source of enrollment and enrollment assistance for the roughly 500,000 Georgians who enroll in private health plans or Medicaid through the platform. DREDF has serious concerns that this waiver does not meet the requirements of Section 1332 of the Affordable Care Act, as it will revert Georgia's healthcare enrollment into a system that forces consumers to search among a multitude of private, profit-drive web brokers and insurers in order to find coverage. This fragmented system will create new barriers to enrollment, eliminate neutral navigators, and result in increased enrollment in "junk" plans that do not meet an individual's needs. These harms will be particularly hard felt among Georgians with disabilities. We urge HHS and USDT to immediately rescind the waiver. [...]

COVID Vaccines for Children with Disabilities with Dr. Noemi Spinazzi

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December 13, 2021
Webinar recording of COVID Vaccines for Children with Disabilities with Dr. Noemi Spinazzi.
Pediatrician Noemi Spinazzi, MD is a primary care physician at UCSF Benioff Children's Hospital Oakland and an assistant professor of pediatrics at UCSF. She provides primary care services to hundreds of children with complex care needs and developmental disabilities, and she founded a specialized clinic serving patients with Down syndrome. She is also the director of the developmental and behavioral pediatrics resident rotation at Children's Oakland. [...]

DREDF Comments on Medicare Reviews of Inpatient Rehabilitation Facility Admission

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October 8, 2021
California will be among 17 states in which the Centers for Medicare and Medicaid Services (CMS) plans to initiate a 5 year project to review all claims submitted for inpatient rehabilitation facility (IRF) services. IRFs provide intensive rehabilitation and care coordination that people may need to recover after a medical event such as a heart attack, a stroke, or a traumatic brain or spinal cord injury. Just as importantly, people with chronic conditions and disabilities may need IRF services to maintain their functional capacity and prevent or slow down functional deterioration experienced over time. A temporary IRF stay can mean a faster and more efficient return to the community. CMS has provided little evidence of the fraud that is cited as justification for the demonstration, and we already know that IRF services can be denied to people with disabilities even when they are of medical benefit, especially people with chronic progressive conditions who are already too often "written off" because they cannot be cured or "fixed." In our comment letter, DREDF opposed gatekeeping measures that stop people with disabilities from getting the care they need to live fully and independently in their communities. [...]

Pharmaceutical Analyses Based on the QALY Violate Disability Nondiscrimination Law

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September 21, 2021
Over the past several decades, the debate over the cost of pharmaceuticals and the perceived “value” of certain drug treatments has amplified. In pursuit of cost containment, policymakers have wrestled with the concept of cost-effectiveness and sought measures by which to guide health care payers in their decisionmaking regarding formularies and utilization management. One measure in use by many payers is the Quality-Adjusted Life Year (“QALY”). The QALY is a metric that, in theory, measures the degree to which a drug or therapy extends life and improves quality of life. The QALY is used to develop guidelines on the economic “value” of a given pharmaceutical, which then informs a payer’s decision of whether to cover such drug and, if so, under what terms. Unfortunately, the QALY relies on a set of discriminatory assumptions that devalue life with a disability, disadvantaging people with disabilities seeking to access care based on subjective assessments of quality of life. This paper details how the use of the QALY violates disability nondiscrimination law. [...]

DREDF Comments on Approved TennCare III Demonstration

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September 9, 2021
DREDF submitted comments to the U.S. Department of Health and Human Services (“HHS"), urging rescission of HHS’ approved Section 1115 waiver permitting the State of Tennessee to fundamentally alter its Medicaid program, to the detriment of low-income people with disabilities and chronic conditions. The comments explain how the approval was unlawful under the requirements of the Medicaid Act and how it will disproportionately harm disabled enrollees by reducing access to Long-Term Services and Supports (“LTSS”), needed prescription drugs, and retroactive healthcare coverage. [...]

Disability Rights and Health Advocacy Organizations Urge Recission of TennCare III Demonstration

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July 12, 2021
In the dying days of the Trump adminsitration, CMS approved Tennessee's latest Medicaid 1115 waiver proposal which establishes TennCare III under a federal spending cap rather than a program that provides healthcare to all low-income Tennesseans who qualify. The National Health Law Program, the Tennessee Justice Center, and King and Spalding filed a complaint April 22, 2021 in the DC District Court on behalf of thirteen TennCare enrollees, arguing that the Trump administration failed to follow the proper rules before approving the waiver. and that the waiver cannot be approved under 1115's authority to conduct an experiment when Tennessee's proposal affects nearly all TennCare's 1.5 million enrollees for a ten year period. DREDF and 14 other disability rights and healthcare advocy organizations who are concerned about the negative impact on Tennessee's Medicaid enrolless and the bad precedent established for other states sent a letter to CMS asking the agency to take back approval for the changes to Tennessee's medicaid program. [...]

Supreme Court Ruling Leaves ACA Intact

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The Disability Rights Education and Defense Fund applauds the June 17, 2021 Supreme Court decision in California v. Texas, which upheld the Affordable Care Act (ACA) and its critical nondiscrimination and healthcare expansion provisions.  The ruling by the nation's highest Court rejected a significant challenge to the constitutionality of the ACA.  In 2020, DREDF and a number of allied organizations filed an amicus brief opposing attempts to dismantle the ACA provisions that people, including many with disabilities, rely on to receive the healthcare services and supports they need. [...]

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