Submitted April 21, 2023 by The Partnership for Inclusive Disaster Strategies to the U.S. Department of Energy

The Partnership for Inclusive Disaster Strategies (The Partnership), a 501c (3) organization, is the only U.S. disability-led organization with a focused mission of equity for people with disabilities and people with access and functional needs throughout all planning, programs, services and procedures before, during and after disasters and emergencies.

The Partnership prioritizes equity, access, disability rights, disability justice, and full inclusion of people with disabilities, older adults, and people with access and functional needs before, during and after disasters and emergencies. We recognize that prevention, planning, response, recovery, and mitigation must start with and be led by multiply marginalized disabled people who are the most disproportionately impacted.

The Co-Executive Directors of The Partnership, Germán Parodi and Shaylin Sluzalis, went to Puerto Rico immediately after Hurricane Maria as disabled first responders. The Partnership has provided ongoing technical assistance and support to people with disabilities on the island since then, including in the aftermath of hurricane Fiona. The following comments are derived from The Partnership’s ongoing support in Puerto Rico for nearly six years through on the ground response; The Partnership's Disability & Disaster Hotline; national stakeholder calls, and working in partnership with Movimiento para el Alcance de Vida Independiente (MAVI) and Centro Ponceno de Vida Independiente (CEPVI), the territory’s centers for independent living, which are disability-led organizations that support people with disabilities to live independently in the community; and the Puerto Rico University Center for Excellence on Developmental Disabilities/IDD (PR-UCEDD). 

The Consolidated Appropriations Act of 2023 includes specific language intended for Puerto Ricans with disabilities as recipients of PR-ERF funds (“... including grants for low and moderate income households and households that include individuals with disabilities”). Comments below address how to prioritize participants in PR-ERF and how to engage PR-EF participants who have been prioritized.

Beneficiary and Community Considerations

Eligibility and Priorities

According to the UN, people with disabilities are more likely to die or be injured in disasters. People with disabilities were disproportionately impacted during hurricanes Maria where between 3,000 and 4,645 people died, and Fiona where at least 25 people from Puerto Rico died. Disabled people including older adults with disabilities were disproportionately impacted. People with disabilities were forced to go to hospitals because they lacked power. Others died in their homes because they lacked power for ventilators and other powered durable medical equipment. The many barriers that people with disabilities encountered are addressed in the Partnership’s After Action Report on the 2017-2018 disaster season. 

Some persons ended up in hospitals in the continental United States (CONUS) where they struggled to get access to Medicaid, find housing for themselves if they were not in need of hospitalization or for family members who accompanied them. One mother evacuated Puerto Rico to Florida with an infant that required use of a ventilator and feeding tube. She reported to The Partnership that they had no food, no place to stay, and that “they were being threatened with intervention from Child Protective Services due to the mother’s status as homeless” (After Action Report). The primary reason that the mother was forced to evacuate was absence of available, dependable power in Puerto Rico.

The disproportionate impact of disasters on people with disabilities in Puerto Rico makes it critical that people with disabilities are prioritized for participation in PR-EF. Because of the significantly high poverty rate for people with and without disabilities in Puerto Rico, participation must have no cost to individuals with disabilities or members of their households.

It is not adequate to prioritize by a category as broad as “disability.” Given that the allocated funding of one billion dollars will only fund roughly 20% of the solar power units needed, priorities will need to be set within the category of households with a member with a disability. Priority should particularly be given to people with disabilities who are power dependent. This should begin with prioritizing people who use ventilators, oxygen tanks, suction machines, and monitoring equipment, as well as people who use power mobility devices, such as power wheelchairs and scooters.

Below is a method of inclusively conceptualizing energy reliance for people with disabilities:

• Medical and Non-Medical:

• • Respiratory equipment: oxygen, respirator, inhalation therapy, apnea monitoring, suction, machines, airway clearance, airway clearances, vests, cough assistive devices

• • Equipment for hemodialysis

• • Nutritional equipment: gastric feed tube, specialized diet meal preparation equipment (e.g., feeding pumps, blenders)

• • Heating/cooling equipment: refrigeration, body temperature regulation

• Behavioral, Mental, and Emotional Health:

• • Powered equipment supporting regulation of emotional behaviors (e.g., sensory lights)

• Mobility and Movement:

• • Positioning equipment: Lift, mobility tracking system, power wheelchairs, in home chair lift, electric beds

• Communication:

• • Augmentative communication devices (e.g., tablets, wearables, eye gaze), alert system
  • Powered equipment for hearing or vision support

Users of this type of equipment can be identified in several ways. Energy-relient people can self-identify in response to a media or other informational campaign. They can identify with support from disability-led organizations (NGOs–organizations where the majority of board and staff are persons with disabilities), including centers for independent living. Users of this type of respiratory equipment may also be identified via suppliers with consent from the consumer.

Solar power equipment units should be attached to the person with a disability not to their dwelling unit. People with disabilities can and will relocate, especially in the aftermath of disasters. Therefore, the flexibility to move units as people who have been prioritized to receive them relocate is critical.

Engagement with Local Stakeholders

In order to identify individuals who should be prioritized, collaboration with disability-led organizations such as MAVI and CEPVI is essential. These organizations, along with leaders with disabilities in the territory, have credibility with residents as well as an understanding of who prioritized people are and how to best reach them. These organizations and disabled leaders must be compensated for their role in connecting residents with PR-ERF.

Outreach

Intensive rapid outreach to households with people within disabilities who are prioritized must be funded and carried out. Outreach should be steered by disability-led organizations.

Outreach will need to focus on:

• Which people with disabilities qualify for the program;
• How to apply for the program; and 
• The entities providing the program are trustworthy and reliable.

All outreach must be in Spanish and accessible to people with disabilities. This means that:

• Video or televised announcements must be captioned, interpreted in sign languages predominate to the area, and have audio description wherever information appears on the screen but is not read.
• Print advertisement must be available in large print and have availability in braille.
• Information online must be compliant with Section 508 of the Rehabilitation Act.
• All outreach materials, videos, and scripts should be in plain language that is easily understood by intended audiences.

Outreach also must be conducted in disability communities who live in the interior of the island. Because of discomfort with and potential mistrust of outsiders, this can only be successfully accomplished by having people with disabilities who have established relationships with the local community knock on doors, organize local meetings, and utilize other in-person strategies. It is imperative that the individuals who do this are people with disabilities from disability-led organizations or people with disabilities who are otherwise leaders in the community.

Funding must be made available to make outreach accessible including creation of disability culturally appropriate material, making digital and print material accessible, and providing sign language interpreters. It also must be made available to compensate disability-led organizations and disabled leaders to engage in outreach activities.

Unless a concerted outreach effort is conducted, people with disabilities who are at highest risk of death and injury due to power loss will lose power in disasters and possibly die.

Training

Training in understanding and using the equipment, must be provided prior to receiving equipment and then on an ongoing basis. Training must be in Spanish and also presented in sign languages used in the area. This should include Puerto Rican Sign Language (PRSL) and pidgin sign.  

All training and other material must be in Spanish and in accessible alternate formats.

Training should include plain language, accessible information about any routine maintenance that will be needed, capacity of the equipment, and who to contact to obtain routine and unanticipated maintenance. It should also include instruction on any preparation that is necessary in the event of disasters with notice as well as in no notice disasters.

Maintenance

If this initiative is to be successful, funding must be identified and allocated for no cost ongoing maintenance.

Thank you for your consideration of these comments.