March 3, 2020

THERE IS AN URGENT NEED FOR GOVERNMENT TO ADDRESS THE RIGHTS AND NEEDS OF PERSONS WITH DISABILITIES THROUGHOUT ALL COVID-19 PLANNING AND RESPONSE

 CLOSE EXISTING GAPS, MINIMIZE IMPACT AND OPTIMIZE LIMITED RESOURCES FOR OPTIMAL COMMUNITY-WIDE OUTCOMES

The disability advocacy organizations identified below and a coalition of disability rights and emergency management experts from across the country are issuing an urgent call to action for immediate strategies and solutions from the federal government and governments at every level, including local, state, tribal and territorial, to address the specific needs of persons with disabilities throughout the COVID-19 outbreak and all public health emergencies.

Persons with disabilities require the same resources and assistance that everyone does – adequate information and instructions, social and medical services, and protection from infection by those who have contracted the virus. However, some persons with disabilities may have needs that warrant specific steps by the public and private sectors that may not be necessary for others. Below we set out some particular areas where these steps are necessary and which do not appear to be addressed by current strategies. 

We urge the federal government and governments at every level to address expressly each of the areas described below in their planning and response.

Background

One in four adults in the US has a disability. Globally, well over 1 billion people have disabilities. Children and adults with disabilities and older adults are 2-4 times more likely to be injured or die in a disaster due to a lack of planning, accessibility, and accommodation. Most people with disabilities are not inherently at a greater risk for contracting COVID-19, despite misperception that all people with disabilities have acute medical problems. 

Actions taken now can make a big difference in COVID-19 outcomes for the whole community, as well as public health emergency response in the future. 

One of the wisest actions our communities can take immediately is to ensure that people have what they need to stay healthy. This includes minimizing unnecessary exposure to infection and circumstances that contribute to preventable medical conditions. Protecting our limited medical resources is something to which everyone can contribute. Among the most important steps is to ensure the continuity of operations for services, supplies, and support that people with disabilities and older adults depend on to maintain their health, safety, dignity, and independence in the community. Continuity of operations means that agencies, community, health maintenance, medical, transportation, and other essential service providers are able to continue performing essential functions under a broad range of circumstances without interruption.

Continuity of Operations and Services

Many persons with disabilities rely on uninterrupted home and community services and supports. If businesses or government agencies close or restrict staff, there is a risk that these services will be disrupted. Ensuring continuity of operations means that public agencies, community organizations, health care providers, and other essential service providers are able to continue performing essential functions to meet the needs of persons with disabilities. Government strategies must address disruption in services and develop contingent sources of comparable services.

Access to Information

Persons with disabilities must be able to receive timely and accessible information about what steps they must take to minimize the risk of infection; what actions are being taken that may affect their living arrangements; and the availability of services, caregivers, medication, and other changes critical to their personal planning and preparedness that may directly impact their daily life.

Instructions must also be provided for service providers in accessible formats to maximize their health and minimize the spread of infection. 

Government entities must provide communication that is equally effective to all audiences at all times. This includes ensuring that all televised public announcements are live-captioned and provided by qualified sign language interpreters. Websites and other digital and electronic information must be accessible to people with vision, hearing, learning, intellectual and developmental, and dexterity disabilities, and to individuals who do not read print because of their disability. This must include information to be delivered via assistive technology such as text-to-speech devices and Braille readers. All communications must utilize plain language to maximize understanding and the information must be provided in multiple languages for people with limited English proficiency.

Meeting Daily Living Needs

Like everyone, persons with disabilities have ordinary daily living needs, including access to food (in some cases delivered meals and meals that meet specific dietary requirements), housing, healthcare, in-home, school and community support as well as maintaining employment and access to accessible transportation. If businesses close or their capacity is greatly reduced, these needs cannot be met. Government planners must address how persons with disabilities can continue to meet these needs of daily living, including the possible need to deliver meals, supplementary and alternate disability supports, and other services to persons with disabilities. Providers of these services must have the personal protective equipment and instructions needed to minimize exposure and spread of infection. 

Living Arrangements and Isolation or Quarantine

We have seen how COVID -19 may affect persons with disabilities and their paid and unpaid caregivers in their own homes, family homes, and in shared living arrangements. In some cases, persons with disabilities and caregivers may require isolation or quarantine. In the event that persons in group living facilities become infected, government planners must address how to provide care for those persons without endangering others in the facility. Government planners must provide instructions for dealing with these complicated situations, explicitly addressing the rights and needs of persons with disabilities. Placement of caregivers and service providers in quarantine or isolation must not leave persons with disabilities without services and supports to maintain their health, safety, dignity, and independence. All physical accessibility, program accessibility, and effective communication accessibility requirements must be met throughout placement in quarantine and isolation.

Access to Protective Equipment, Bulk Distribution of Food, Medication, and Health Maintenance Supplies

In some communities, the distribution of protective equipment, food, and medical supplies may be warranted. If Point of Distribution locations are established, government planners must address how these supplies and equipment will be distributed to persons whose ability to drive, lift, carry or whose use of public transportation is limited.

Legal Obligations and Training

Public and private agencies that provide services to persons with disabilities must be aware of their legal obligations and must train their employees appropriately. When public and private agencies and businesses are unclear about their legal responsibilities, there are no limitations in providing greater than minimum levels of support and services to persons with disabilities. Lack of understanding is NEVER an acceptable reason for failing to meet legal obligations, including throughout emergency circumstances.  

Government entities

Government entities have a legal obligation to provide equal access to public health emergency services to people with disabilities, including throughout a pandemic, if declared, under the Rehabilitation Act of 1973, 29 U.S.C. § 701 et seq. and the Americans with Disabilities Act of 1990, 42 U.S.C. § 12101 et seq. Equal access includes ensuring continuity of operations for disability services before, during, and after public health emergencies.

Private entities

Private entities have obligations under the Rehabilitation Act when they receive or disseminate federal funds. They also may have obligations independent of federal funds under the Americans with Disabilities Act and other laws.

Right to Live in the Community

People with disabilities have the right to receive services in the most integrated setting appropriate to their needs. Disruption of operations can result in institutionalization which, in addition to violating rights, can lead to negative health outcomes, including death. Equal access to placement in quarantine and isolation must also be provided in the same settings as other persons without disabilities.

The existing legal protections of persons with disabilities remain in effect under all circumstances. These protections are not subject to waivers or exceptions, even during public health emergencies or declared pandemics.

Consultation with Disability Community Leaders Who Are Subject Matter Experts

Government planners must follow certain principles in developing their approach to persons with disabilities. First, they must consult with leaders from the disability community in their planning. Second, they must consult with experts with real-life experience in dealing with mental health, aging, sensory, and communication disabilities, chemical and environmental sensitivities, autism, intellectual, developmental and cognitive disabilities, and chronic health conditions. Third, they must avoid disrupting the lives of persons with disabilities based on prejudice or unwarranted assumption. Like everyone, persons with disabilities need to be informed of why public agencies believe that certain actions are warranted, to be given an opportunity to ask questions and receive answers in an accessible format, and to be afforded the opportunity to object and propose alternative solutions.

In closing, immediate and sustained action is imperative to meet the urgent and ongoing needs of every affected and potentially affected community. Please share this Call to Action widely. A press release will also be issued. Further information and an opportunity to add your organizational support will follow. 

In Solidarity, 

Germán Parodi & Shaylin Sluzalis
Co-Executive Directors
www.disasterstrategies.org 
directors@disasterstrategies.org
215.971.0660 & 570.777.0268

                                                                        
                 Marcie Roth                                                              Todd Holloway
         Executive Director & CEO                     Chair Emergency Preparedness Subcommittee 
                www.wid.org                                                              www.ncil.org 
              marcie@wid.org                                                     toddh@cfisouth.org 
                301.717.7447                                                            253.830.4279

_______________________________________________________
 

COVID-19 NATIONAL DISABILITY RIGHTS
CALL TO ACTION ORGANIZATIONAL SIGN-ON: 

The 183 organizations listed below have signed on in support and in solidarity of the below statement released on March 3rd identifying 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. 
 

Able South Carolina
Access Alaska, Inc.
Access Concepts & Training, Inc.
Access Living of Metropolitan Chicago
Access To Independence
ACCSES
ADAPT Montana
ADAPT of Texas
Agency on Aging of South Central CT
AIM Independent Living Center
Alliance Center for Independence
Aloha Independent Living Hawaii
American Association of People with Disabilities
American Association on Health and Disability
American Foundation for the Blind
American Foundation for the Blind
American Network of Community Options and Resources  ANCOR
Association of Assistive Technology Act Program
Association of People Supporting Employment First
Association of Programs for Rural Independent Living
Association of University Centers on Disabilities
Atlantis Community, Inc
Benetech
Blue Ridge Independent Living Center, Inc.
Boston Center for Independent Living, Boston Commission for Persons with Disabilities
Brazos Valley Center for Independent Living
BRIDGES
California Disaster Strategies Coalition 
California Foundation for Independent Living Centers 
Californians for Disability Rights, Inc
Center for Disability Rights
Center for Independence
Center for Independence of the Disabled, NY
Center for Public Representation
Center on Disability Studies, College of Education, University of Hawaii at Manoa
Christopher & Dana Reeve Foundation
City of Thornton
Colorado Cross Disability Coalition
Columbia County Developmental Disability Group
Community Connections, Inc.
Community Emergency Response Volunteers of the Monterey Peninsula
Connecticut Cross Disability Lifespan Alliance
Connecticut Legal Rights Project 
Connections for Independent Living
CROATIAN UNION OF ASSOCIATIONS OF PERSONS WITH DISABILITIES 
CT State Independent Living Council
Detroit Disability Power
DIRECT Center for Independence
Disabilities Resource Center of Siouxland
Disability Action for America
Disability Care Network
disABILITY LINK
Disability Rights activist
Disability Rights Advocate 30+ Years
Disability Rights California
Disability Rights Education & Defense Fund
Disability Rights Education & Defense Fund 
Disability Rights Florida
Disability Rights Maryland
Disability Rights North Carolina
Disability Solutions for Independent Living, Inc
Disabled In Action of PA
Disabled Queers In Action! DQIA
Diversified Enterprises 
Down Syndrome Association of Connecticut
Easterseals
Empowerment Through Integration
Epiphanies of Equity LLC
Equality North Carolina
Erin Brown Connects, Disability Advocacy and Inclusion Management , Nassau, New Providence , The Commonwealth of The Bahamas 
Family to Family Network
Florida ADAPT
Florida Center for Inclusive Communities UCEDD
Florida Legal Services
Fund for Community Reparations for Autistic People of Color's Interdependence, Survival, and Empowerment
Ga ADAPT
Health Justice Commons
Home Care For You, Inc
Houston Center for Independent Living
Hudson Milestones
Idaho Access Project 
Illinois-Iowa Center for Independent Living
INclude - The Mental Health Initiative
Independence Associates, Inc.
Independence Northwest, Inc.
Independence Unlimited
Independent Living Center of the Hudson Valley
Indiana Statewide Independent Living Council
Judith Heumann LLC
Kansas ADAPT
Kelly's Kitchen
Lakeshore Foundation
Laura George, EMDL
Little People of America, Inc.
Living Hope Wheelchair Association
MAVI
Michigan Disability Rights Coalition
Minnesota Council on Disability
NADD
National Alliance for Direct Support Professionals, Inc.
National Association of Councils on Developmental Disabilities
National Association of the Deaf
National Center for Parent Leadership, Advocacy, and Community Empowerment (National PLACE)
National Council on Independent Living
National Disability Mentoring Coalition
National Disability Rights Network
National Down Syndrome Congress
National Low Income Housing Coalition
NCIL Emergency Preparedness Subcommittee
Nebraska Statewide Independent Living Council
Network of OT Practitioners with Disabilities & Supporters 
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.
NorthWest Colorado Center for Independence
Not Dead Yet
Not Dead Yet Montana
Ocean State Center for Independent Living (OSCIL)
On Our Own of Prince George’s County
Oregon Statewide Assistive Technology Program
OT Leaders & Legacies Society
PA ADAPT
Paralyzed Veterans of America
Partners for Access
Partnership for Inclusive Disaster Strategies
Personal Attendant Coalition of Texas
Philly ADAPT
Pittsburgh Center for Autistic Advocacy
PolicyWorks, Inc
Progressive Center for Independent Living
Queer Women of Color Media Arts Project - QWOCMAP
Quiet Calm LLC
Raghu Ram
REquipment Durable Medical Equipment & Assistive Technology Reuse Program, Inc.
Resource Center for Accessible Living, Inc.
RespectAbility
San Jose Peace and Justice Center
Senior and Disability Action
Service Center for Independent Life
Siegel Rare Neuroimmune Association
Sins Invalid
Southeast Kansas Independent Living 
Southern Tier ADAPT
Southern Tier Independence Center
Southwest Center for Independence
Special Needs Parent 
Special Olympics
Spina Bifida Association
St. John's Community Services
Stockton University Wellness Center
Summit Independent Living
TASH
Texas Parent to Parent
The Ability Center
The Arc of the United States
The Center for Disability Empowerment
The Family Resource Network
The Independence Center
Tony Coelho
Topeka Independent Living Resource Center
Touch the Future Inc
Trach Mommas of Louisiana
UCP Heartland
United Cerebral Palsy National
United Spinal Association
United States International Council on Disabilities
United States International Council on Disabilities 
Unlimited* Ministry - Mount Paran Church
US Society for Augmentative and Alternative Communication (USSAAC)
USICD US International Council on Disability
Utah Department of Health
Vermont Center for Independent Living
Vermont Coalition for Disability Rights
Volar Center for Independent Living
VT Statewide Independent Living Council
West Virginia Statewide Independent Living Council
Westchester Disabled On the Move, Inc.
Westchester Independent Living Center
Western Connecticut Association for Human Rights, WeCAHR
Western New York Independent Living, Inc.
World Institute on Disability 

THANK YOU!
We are incredibly thankful to our partners and supporters who have been involved and joined us in the fight for systematic advocacy on the rights and needs of people with disabilities, older adults, and people with access and functional needs throughout all phases of COVID-19 planning and response, and all public health emergencies.  

Our voices are the strongest when we amplify our unified message. We thank you for your support and efforts to educate, advocate, and make a difference for people with disabilities in your community before, during and after the ongoing COVID-19 outbreak and all public health emergencies and disasters.   

The list of organizational supporters for the COVID-19 National Disability Rights Call To Action is growing daily!
To see live updates of organizations supporting this statement, spreading the message, and doing the good work please click here: https://tinyurl.com/live-org-updates

To sign your organization's support onto this statement please click here: https://tinyurl.com/org-signon-form

This COVID-19 National Disability Rights Call To Action was sent to the White House COVID-19 Task Force on March 9th with the following letter addressing specific questions, see the letter to the White House COVID-19 Task Force here: https://tinyurl.com/letter-wh