Senate Action Needed on Developing a Fourth Coronavirus Package

The Senate must act to pass legislation that includes the critical needs of people with disabilities, their families, and the direct support professional workforce in a new Coronavirus package. In May, the House passed its fourth coronavirus package, the Health and Economic Recovery Omnibus Emergency Solutions (HEROES) Act (H.R.6800) with a vote of 208-199.

This package includes:

  • Increased federal funding for home and community based services (HCBS) under Medicaid
  • Expanded eligibility for economic impact payments to adult dependents and another round of payments
  • Paid leave eligibility for family caregivers of adults with disabilities, including siblings and grandparents

See The Arc’s statement. We urge you to contact your Senators now.

The Arc and Partners Release Guidance on Avoiding Discrimination in Medical Treatment Rationing

On April 3, The Arc along with many disability organizations released a guide for states and hospitals on applying the recent Department of Health and Human Services (HHS) bulletin on avoiding discrimination in treatment rationing. The document emphasizes that federal disability rights laws protecting people with disabilities against discrimination apply to hospitals experiencing a medical equipment, bed, or staffing shortage during the COVID-19 pandemic. It also states that every patient must be treated as an individual, not a diagnosis; and it reminds care providers of effective communication requirements for with people with disabilities, among many other recommendations. Read The Arc’s statement.

HHS OCR Issues Guidance Against Discrimination in COVID-19 Treatment

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.

The Arc Joins Bipartisan Policy Center Letter Calling for the Filling of Two Social Security and Medicare Trustee Seats

On February 11, Marty Ford, Senior Advisor at The Arc, joined over 100 individuals, including former government officials of both parties, academics, and representatives of organizations with a broad spectrum of viewpoints, in calling on the U.S. Senate to act on the pending nominations for the two public trustees for the Boards of Trustees of the Social Security, Disability Insurance, and Medicare Trust Funds. These positions have been vacant since 2015, leavings the boards without independent voices.

Health: Appeals Court Rules Part of ACA Unconstitutional

On December 18, the Fifth U.S. Circuit Court of Appeals declared parts of the Affordable Care Act (ACA) unconstitutional and sent the case back to the lower court to determine which parts of the law will remain in effect. Many of the law’s most popular provisions are in jeopardy, including the protections for people with pre-existing conditions, allowing parents to cover their children until age 26, eliminating annual and lifetime limits on coverage, and other provisions. The ACA provides many critical protections for people with disabilities and The Arc will continue to support the law. Read The Arc’s statement.

Health/Rights: NCD Releases Report on Quality-Adjusted Life Years

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.

Health/Rights: National Council on Disability Releases Report on Genetic Testing

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.

Health Care: Health Insurance Open Enrollment Continues Through December 15

Now is the time for individuals who are uninsured or are looking for affordable health insurance to investigate the private health insurance plans available through state marketplaces (to find your state information visit During open enrollment, a person can purchase private health insurance through the marketplace in each state. There may also be financial assistance to help with health care costs available to people with low and moderate incomes. It is also important for people who currently have insurance through the marketplace to look at the plan to determine if it will continue to meet their needs. Individuals who do not take action will be automatically re-enrolled in the current plan. Re-enrollment is also an important opportunity for people to report any changes in income.

Health: House Committees Approve Lower Drug Costs Now Act

The House Committees on Energy and Commerce, Ways and Means, and Education and Labor have approved the Lower Drug Costs Now Act of 2019 (H.R.3). This bill requires the Centers for Medicare and Medicaid Services to negotiate prices on insulin and at least 25 drugs each year. These negotiated prices would apply to all Medicare Advantage and Medicare Part D plans. Additionally, it creates an out-of-pocket limit of $2,000 for Medicare Part D plans. The Arc is pleased that provisions were added to ensure that the value of drugs is not measured based on quality-adjusted life years (QALYs), which 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 amended bill makes several improvements for Medicare low-income subsidy recipients that The Arc supports, such as eliminating co-payments for generic medications.