Legislative Recommendations for Public Health Emergencies and Disasters

To meet the urgent and immediate needs of people with disabilities, including multiply-marginalized people, throughout the COVID-19 Public Health Emergency, Presidential Disaster Declarations, concurrent disasters and in preparation for future disasters and public health emergencies

1. There must be the establishment and funding of one or more Disability, Emergency and Disaster Technical Assistance Centers led and managed by disability inclusive emergency management experts, operational within 30 days of enactment in order to meet the immediate life saving and life sustaining needs and protecting the rights of 61 million adults with disabilities and for others who also have access and functional needs in a disaster or public health emergency

Purposes of the Disability, Emergency and Disaster Technical Assistance Centers:`

1. Operating a National Disability Disaster and COVID-19 rights and needs Hotline
2. Developing and delivering remote just-in-time training on the COVID-19 rights and needs of people with disabilities, with a specific focus on: 
   1. The rights and immediate needs of people with disabilities who need supports and services to protect themselves from exposure.
   2. People with disabilities who are in quarantine.
   3. People with disabilities who are in isolation or in an acute care medical setting.
   4. Information for medical, public health, and public safety officials, government and non-government, and private sector entities to understand their obligations to people with disabilities, before, during and after public health emergencies and disasters.
   5. Meeting continuity of operations and continuity of services for serving people with disabilities across the lifecycle and throughout the disaster cycle.
   6. Public engagement, coordination between all public and NGO stakeholders to provide accessible information, promising and good practices, and problem-solving via disability accessible teleconference and web-based information sharing.
   7. Crisis counseling and Disaster Case Management for people with disabilities, eligible as a result of Federal Disaster Declarations. Crisis counseling and Disaster Case Management must be provided by disability culturally competent providers, and must be equally effective for all people with communication disabilities. Crisis Counseling and Disaster Case Management must be provided without interruption and gaps. Auxiliary aids and services to make communication equally effective include sign language interpreters, real-time captions, CART, plain language, easy read, Braille, large print, screen reader and other alternative formats. Alternative and augmentative communication is used by many people with disabilities to meet their daily communication needs. For people with COVID-19 whose ability to communicate may be temporarily affected, equal access to crisis counseling can be provided by utilizing auxiliary aids and services to meet their urgent crisis communication needs.
       
3. Amendment to Stafford Act - Use of Disaster Response and Recovery Funds
   1. Fund certain “nonprofit entities” in Category B language - amended to define funding for a training & technical assistance center.
   2. Funding for disability-led organizations providing life saving and life sustaining assistance in a federally declared, Stafford Act eligible disaster or emergency.
       
4. Fund state, local, tribal and territorial government entities to track the displacement of people with disabilities into skilled nursing facilities (SNF) and other institutions with or without the use of a CMS 1135 Blanket Waiver.
    
5. Require and fund federal, state, local, tribal, and territorial government entities to ensure disability services and supports are provided in the most integrated settings appropriate to the person.  
   1. If the person is in an acute care setting, all reasonable accessibility accommodations and modifications of policies and practices are provided without interruption.
   2. To maintain all reasonable accessibility accommodations and modifications of policies and practices are provided without interruption at home and throughout transition home from an acute care or institutional setting.
      1. Increase Home and Community Based Services (HCBS) funding
      2. Expand funding for Money Follows the Person (MFP)
          
6. Fund federal entities to monitor recipients and subrecipients of federal funds to ensure compliance throughout all disaster-related placement decisions by recipients and subrecipients of federal financial funds within 30 days, and with quarterly reports to Congress.

Additional recommendations for legislative action are all drawn from the 5/24/19 report from the National Council on Disability
report to President Trump:

Preserving Our Freedom: Ending Institutionalization of People with Disabilities During and After Disasters

Require CMS to establish a process for Medicaid portability and continuity of services within states and among states, tribes and territories during disasters and public health emergencies to ensure uninterrupted health maintenance and medical care in the least restrictive environment for Medicaid recipients. 

Require that all recipients and subrecipients of federal funds receive just-in-time training in the scope of their obligations to people with disabilities. This training must be developed and delivered by disability led organizations with knowledge, skills and abilities.  This training must include information advising that federal funds may be revoked due to noncompliance with the obligation to receive services in the most integrated setting appropriate and that this obligation applies during disasters. 

Training on the scope of the obligations of recipients and subrecipients of federal financial assistance to people with disabilities during the period of hospitalization and discharge for individuals impacted by public health emergencies and disasters, including those who have been abandoned during evacuation, sheltering, and transition to long-term housing. 

Funding will be provided to disability-led organizations to deliver technical assistance to local, state, tribal, territorial and  federal agencies responsible for emergency preparedness, community resilience, and disaster-related services, programs, supports, or activities to engage with national, state, and local coalitions of disability-led organizations and stakeholders. 

Fund NCD to lead a review of the National Response Framework, Emergency Support Function Annexes, and Federal Interagency Operations Plans and all other applicable federal doctrine to determine any required updates to specifically address responsibility for meeting the equal access, health maintenance, safety, and independence needs of children and adults with disabilities to prevent institutionalization.

Fund an organization with expertise in IDEA, ADA, Rehab Act and Stafford Act to assess and make recommendations that disaster-impacted students with disabilities are not excluded from distance learning and returning to school with their peers and that all supports and services included on their IEP or Section 504 plan are provided without interruption. This includes providing services during school closure and upon school reopening in order to meet their individualized educational needs and to prevent institutionalization. 

Fund a comprehensive assessment of with recommendations for the establishment and execution of a seamless and integrated process in Emergency Support Functions #6 and #8 to prioritize health maintenance for children and adults with disabilities and seamlessly deliver services and supports to people in the most integrated setting throughout the evacuation, sheltering, hospitalization, temporary housing, and disaster recovery.  Recommendations must include actionable steps for the HHS Secretary's Operations Center and the FEMA Emergency Support Function Leadership Group to ensure the rights and needs of people with disabilities are maintained throughout the period of a declared public health emergency and disaster.

Establish a roster of federal agencies who must provide senior leadership participation and active engagement in a community-led public-private partnership with disability organizations with specific expertise and involvement in national disability inclusive emergency management policy and practice.

Authorize and appropriate funds for DHS and FEMA to provide disaster preparedness grants specifically targeted to organizations led by and serving marginalized communities, including but not limited to people with disabilities experiencing poverty; people with disabilities experiencing homelessness; women with disabilities; people of color with disabilities; and members of the LGBTQ community with disabilities. 

Provide funding and quarterly reporting by DOJ, DHS and HHS to monitor and enforce the obligation under both the ADA and the Rehabilitation Act to serve people with disabilities in the most integrated setting appropriate to their needs. 

Fund the FCC to reestablish its Emergency Access Advisory Committee to establish effective communication access requirements for alerts, warnings and notification, including provision of American Sign Language and other existing and new assistive technology. These guidelines should be developed in consultation and collaboration with DOJ, applying the requirements for equal effective communication access. Implementation should include monitoring and enforcement by the FCC and DOJ. 

Fund immediate operations and research into solutions for existing disability service providers (such as independent living centers, paratransit service providers, meals on wheels, medical supply providers, developmental disability service providers, personal assistants, direct support professionals, birth to 3, ADRCs, AAA, sign language interpreters, peer support, respite,  etc to jointly plan for, share information and meet the emergency and disaster needs of the people one or more of them maintain in their database.

Fund research on HIPAA and Privacy Act laws to determine if and how they need to be revised to allow providers to share information and resources in emergencies and disasters. This is an alternative to the use of “special” registries that repeatedly fail to provide a solution for meeting the civil rights obligations the government has to people with disabilities in emergencies and disasters. 

Fund NCD to review the Federal Mass Evacuation Plan, DRRA and PKEMRA evacuation planning requirements, and any other plans that use federal funding for evacuation be reviewed by the Department of Justice, Department of Transportation, Department of Homeland Security, and other federal agencies with a role in planning, implementing and/or funding evacuation initiatives to ensure compliance with disability civil rights obligations throughout disaster response and implement all necessary corrective action immediately. 

Fund HHS CMS to develop and implement within 30 days, a comprehensive federal database in collaboration with all other federal entities with admission and monitoring or funding and reimbursement obligations to ensure that all admissions to hospitals and long-term care facilities during and after disasters are monitored at every admission and discharge and that people placed are provided with the assistance needed to return to their community with all supports and services they need to regain and maintain their independence. Reporting to Congress must begin NLT 60 days and must continue quarterly until all admissions from the start of a declared emergency (including public health emergency) and disaster have returned home (or died).

Fund DOJ and other federal entities with enforcement authority to  monitor and prohibit the automatic placement of individuals with disabilities in hospital and nursing home settings and direct state and local entities to immediately provide supports and services in the most integrated setting appropriate to any person who does not need this level of care. Monitor and enforce civil rights compliance with Titles II and III of the ADA regarding sheltering. 

Fund DOJ, DHS, and HUD to monitor and enforce compliance with obligations for emergency sheltering in a disaster consistent with emergency sheltering requirements under the Fair Housing Amendments Act. Compliance should occur in  transient and long-term emergency shelters.

Congress funds all elements of the REAADI and DRMA Acts not otherwise specified in these recommendations to ensure that the rights of people with disabilities are protected and that the needs of people with disabilities and older adults are met in concurrent and future disasters.

This includes:

• Establish a National Research Center to conduct research and collect and analyze data to determine recommended practices for including people with disabilities and older adults in planning during and following disasters. Establish a “projects of national significance” program to increase the involvement of people with disabilities and older adults in the planning and response to disasters.
• Establish a National Commission on Disability Rights, Aging and Disasters that will provide recommendations on how to ensure effective emergency preparedness, disaster response, recovery, and community resilience efforts for people with disabilities and older adults. 
• Establish one national and 10 regional Training and Technical Assistance Disability and Disaster Centers that provide comprehensive training, technical assistance, development of funding sources, and support to state, tribal, and local disaster relief; public health entities; social service agencies; and stakeholder groups. 
• Require and fund DOJ to create an oversight committee that will review all ADA settlement continued agreements related to disaster-response activities for the years 2005 to 2017. 

Medicaid Relief for Disaster Survivors

• Amending the Social Security Act to provide medical assistance available to relief-eligible survivors of disasters during relief coverage periods in accordance with section 1947.
• Disaster Relief Medicaid for Survivors of Major Disasters.
• Promoting Effective and Innovative State Responses to Increased Demand for Medical Assistance Following a Disaster.
• HCBS Emergency Response Corps Grant Program.
• Targeted Medicaid Relief for Direct Impact Areas.
• Presumptive and Continuous Eligibility, No Documentation Required.

Fund DOJ to provide pointed guidance to sister federal agencies to address the issue of outdated regulations that conflict with the Olmstead integration mandate. 

Fund the University of Minnesota Institute on Community Integration University Center on Excellence in Disabilities Residential Information Systems Project (RISP) to expand their research on institutionalization during and after disasters in all states and territories to include people with all types of disabilities.

Fund DOJ to assess the equal access and non-discrimination civil rights compliance performance of the American Red Cross and other shelter and mass care providers in relation to actions resulting in institutionalization of disaster survivors and issue orders for immediate corrective actions as needed. 

Fund DOJ to issue a fact sheet that defines monitoring and enforcement obligations in order to ensure compliance with civil rights requirements in the placement, as well as to track and use of federal funds associated with emergency and disaster sheltering of people with disabilities. 

Fund Independent Living Centers and other affordable and accessible housing experts to provide individual and household disaster case management focused on the transition and permanent housing needs of disaster-impacted people with disabilities. 

Fund Independent Living Centers and other experts on affordable and accessible housing to provide individual and household disaster case management focused on the transition and permanent housing needs of disaster-impacted people with disabilities during concurrent and future disasters. 

Fund HUD to establish metrics and measure the nationwide availability of the ready supply of accessible, adaptable, affordable, and disaster-resistant permanent and temporary housing. 

Fund FEMA and HUD to create systems for collecting and publishing all disaster recovery and mitigation expenditures for housing that is subject to compliance with requirements under the Rehabilitation Act, Fair Housing Amendments Act, and the ADA. This reporting systems must measure and report compliance with accessibility standards. 

Fund DOJ to monitor and enforce civil rights compliance throughout all phases of disaster response to: a. Prevent abandonment on the part of government entities, such as National Guard and other recipients and subrecipients of federal financial assistance. b. Ensure compliance throughout all disaster related placement decisions made by recipients and subrecipients of federal financial assistance. c. Ensure compliance with Titles II and III of the ADA pertaining to sheltering. 

Fund FEMA to explore  ways to modify their Individual Assistance registration process expeditiously to curtail the incidence of institutionalization of individuals with disabilities during concurrent and future disasters.

Fund the DHS Office for Civil Rights and Civil Liberties to lead and manage the 25-plus federal agencies included in Executive Order 13347, which established the Interagency Coordinating Council on Emergency Preparedness and Individuals with Disabilities (ICC), to collaborate to ensure moving forward that emergency preparedness plans incorporate the perspectives and needs of individuals with disabilities, and that barriers to access, services, and planning are removed. 

Fund member agencies of the ICC to place disability experts from their agency into the field during federally declared disasters in all FEMA Joint Field Offices and Area Field Offices throughout disaster operations. These experts must be qualified by either the FEMA Qualification System or the National Qualification System to ensure adequate expertise in guiding compliance with the civil rights of disaster-impacted people with disabilities to prevent institutionalization during concurrent and future disasters.

Fund HHS to establish a process for states and territories to immediately loan and replace durable medical equipment, consumable medical supplies, assistive technology, and disability services and supports, well as disaster case management to disaster survivors with disabilities, in order to provide equal access and non-discrimination throughout emergency response to meet immediate health, safety, and independence needs.

Fund the Veterans Administration and HHS to ensure disaster-related services for veterans are integrated with all other emergency and disaster services to address the current gap in coordination between services for veterans with disabilities and services for other people with disabilities. 

Fund the immediate provision of experts on reasonable accommodations for every disaster applicant until such time as applicants with disabilities can request and receive these reasonable accommodations through the FEMA application.