Letter to VP Pence on COVID-19 and the Rights of People with Disabilities Throughout Public Health Planning and Response

March 9, 2019

The Honorable Mike Pence

Vice-President of the United States

The White House

1600 Pennsylvania Ave., N.W.

Washington, DC 20500

Dear Mr. Vice-President:

The 64 organizations, identified in the attached statement are writing to you as the leader of the Administration’s effort to control COVID-19. All of the undersigned organizations are leading advocates in the disability community across the country.

We make a very straightforward request: Please direct all the agencies involved in this effort to consider the specific COVID-19 issues faced by persons with disabilities and older adults, the community organizations supporting them, and expressly address these needs in their plans and statements. We are attaching our National Call to Action adopted by these organizations outlining some of the current, emerging, and anticipated issues.

We appreciate the work of the agencies participating in the efforts to contain COVID-19 and to deal with its effects. However, we have neither seen nor heard any discussion of strategies to deal with anticipated and unexpected challenges encountered by persons with disabilities throughout this public health emergency.

In 2018, the Centers for Disease Control and Prevention published “Public Health Emergency Preparedness and Response Capabilities: National Standards for State, Local, Tribal, and Territorial Public Health.” This document specifically addresses continuity of operations and states, “Particular attention should be placed on accessibility of health and human services for at-risk individuals with access and functional needs who may be disproportionately impacted by a public health incident.“ We have seen nothing in the Administration’s strategy indicating that continuity of services for Americans with disabilities is being addressed.

The National Call to Action calls upon emergency and health strategists to address: 1) continuity of services for persons with disabilities who require them for their health and daily functioning; 2) access to actionable information for persons who require accessible forms of communication, including persons with vision or hearing disabilities; intellectual and developmental, autism, cognitive, learning, reading and information processing disabilities; 3) ensuring the daily needs of persons with disabilities are met for food, housing, healthcare, and community support, which are provided by personal caregivers or community agencies; 4) how to operationalize the living arrangements throughout quarantines that potentially may be particularly burdensome for persons with disabilities and their families; 5) ensuring equal access to necessary diagnostic tests and protective equipment; and 6) the provision of training for agencies and their employees in their legal obligations with regard to persons with disabilities.

The nation has witnessed the tragedies that COVID-19 can cause in an institutional setting, such as the nursing facility in the State of Washington. While there are thousands of such facilities throughout the country, including facilities serving children and adults with intellectual and developmental disabilities, autism, psychiatric, or physical disabilities, there are hundreds of thousands of people with disabilities living independently or in small community homes. This reality presents an even greater task of ensuring they have the support needed, and access to information and resources to survive this crisis. We are particularly concerned for the health and safety of these citizens should their support staff and personal assistants become ill or unavailable to continue working. This sector is facing the greatest staffing shortage in our history, and we are deeply concerned that this public health emergency will dramatically exacerbate the workforce crisis.

We ask you and your team to provide us with how the Administration will address the following:

1) What are your plans to address providing services to persons with disabilities living in their own home with daily in-home services and supports, should personal assistance providers become infected or decide to not come to work? We cannot emphasize enough the seriousness of this concern.

2) What are your plans for ensuring that providers who travel from home to home throughout the day do not expose persons with disabilities to COVID-19 in their home?

3) What are your plans to address staffing shortages of social or health service agencies providing services to persons with disabilities should staff become infected or decide to not come to work? We cannot emphasize enough the seriousness of this concern.

4) What are your plans if an individual in a group facility for persons with disabilities is identified as having COVID-19? What guidance will be provided to minimize infection of others? What are your plans if the staff of the facility becomes ill and doesn’t come to work?

5) What are your plans for training the employees of community living facilities regarding COVID-19?

6) What are your plans to communicate emergency information to people who are blind or deaf, or who otherwise need individualized types of communications?

We have not seen any statement by your office or the involved agencies to ensure these and related questions are being asked, much less answered. We stand ready to assist in identifying experts in planning for and responding to the public health emergency needs of persons with disabilities who can recommend possible solutions to you and the relevant agencies working on these issues. We appreciate your attention to this request and the National Call to Action. 

Please feel free to contact any of the following individuals listed below,

• Germán Parodi & Shaylin Sluzalis, Co-Executive Directors of The Partnership for Inclusive Disaster Strategies [email protected] (215) 971-0660 or (570) 777-0268
• Marcie Roth, Executive Director & CEO of World Institute on Disability   [email protected] (301) 717-7447 
• Todd Holloway, Chair of National Council on Independent Living Emergency Preparedness Subcommittee [email protected] (253) 830-4279

COVID-19 NATIONAL CALL TO ACTION

ORGANIZATIONAL SIGN-ON:

The below organizations have signed on in support of and in solidarity for the urgent need for government at all levels to address the rights and needs of people with disabilities, older adults, and people with access and functional needs throughout all phases of the COVID-19 outbreak and all public health emergencies.

Access Living of Metropolitan Chicago

Access To Independence

ADAPT Montana

Agency on Aging of South Central CT

AIM Independent Living Center

Alliance Center for Independence

Aloha Independent Living Hawaii

American Network of Community Options and Resources ANCOR

Association of University Centers on Disabilities

Boston Center for Independent Living, Boston Commission for Persons with Disabilities

BRIDGES

Center for Independence of the Disabled, NY

Christopher & Dana Reeve Foundation

Colorado Cross-Disability Coalition

Community Emergency Response Volunteers of the Monterey Peninsula

Connecticut Legal Rights Project

CT State Independent Living Council

Disabled In Action of PA

Disabilities Resource Center of Siouxland

Disability Rights Maryland

Disability Solutions for Independent Living, Inc

Disabled Queers In Action! DQIA

Easterseals

Ga ADAPT

Independence Northwest, Inc.

Independence Unlimited

Independent Living Center of the Hudson Valley

Living Hope Wheelchair Association

NADD

National Alliance for Direct Support Professionals, Inc.

National Association of Councils on Developmental Disabilities

National Council for Independent Living Emergency Preparedness Subcommittee

National Low Income Housing Coalition

Nebraska Statewide Independent Living Council

New Jersey Statewide Independent Living Council

New York Association on Independent Living

Noah's Ark & Co

North Central PA ADAPT

Northern Regional Center for Independent Living, Inc.

Not Dead Yet

Not Dead Yet Montana

PA ADAPT

Paralyzed Veterans of America

Partnership for Inclusive Disaster Strategies

Philly ADAPT

Queer Women of Color Media Arts Project - QWOCMAP

REquipment Durable Medical Equipment & Assistive Technology Reuse Program, Inc.

Resource Center for Accessible Living, Inc.

Service Center for Independent Life

Southern Tier ADAPT

Southern Tier Independence Center

Spina Bifida Association

TASH

The Ability Center

The Independence Center

United Cerebral Palsy National

Utah Department of Health

Vermont Center for Independent Living

Vermont Coalition for Disability Rights

VT Statewide Independent Living

Westchester Independent Living Center

Western Connecticut Association for Human Rights, WeCAHR

Western New York Independent Living, Inc.

World Institute on Disability