|NATIONAL CALL TO ACTION
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.
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, 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 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 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.
Germán Parodi and Shaylin Sluzalis
The Partnership for Inclusive Disaster Strategies
215.971.0660 and 570.777.0268
Executive Director and Chief Executive Officer
World Institute on Disability
National Council on Independent Living Emergency Preparedness Subcommittee