Policy, Reflections from Our CEO

Disability and the Climate Crisis

Vincenzo Piscopo
Vincenzo Piscopo
President & CEO
United Spinal Association

Climate change poses such an existential challenge to humankind that our response to its impact on both our species and the biosphere will be a bellwether for how we will respond to every other problem that we collectively face.

There are, of course, two major aspects to a response to climate change. One is changes to production and consumption to arrest global warming and pollution as much as possible. The other is emergency preparedness.

In carrying out these necessary changes and lifesaving preparations, we must accommodate the needs and concerns of everyone—especially those of marginalized communities. Hurricane Katrina was an example of what happens when underserved communities are unheard and forgotten that must never be repeated. We now live in an era where once-in-a-century climatological events occur every year. No one should be left behind in the new normal: the stakes here are survival.

The effects of climate change may be overwhelming—but with sufficient preparation, we can greatly mitigate the human cost. Although the disruption to the North Atlantic jet stream linked to climate change seems to have unleashed unpredictable weather patterns across North America—resulting in seemingly never-ending droughts (and thus wildfires), floods, and severe heat in unusual places like Cascadia and dangerous deep freezes as far south as Texas—we can anticipate the impact of these events and prepare accordingly. Likewise, the best modeling software can get a hurricane’s intensity and trajectory wrong, but as the warming of the Atlantic Ocean continues unabated (for now), we know for sure that the entirety of the Gulf and East Coasts are potentially implicated. We can intelligently plan on a national and regional level to improve our level of preparedness and our physical infrastructure—and any intelligent plan would naturally include people with disabilities.

People with disabilities are going to be especially vulnerable to the blunt end of every natural disaster. The community of people living with spinal cord injuries and disorders and wheelchair users in general have specific—and addressable—needs that can be met with the right resources and expertise. We need to be included in evacuation plans—both in terms of moving us out of danger and finding us an accessible place to stay. The indignity and intensified trauma that people with disabilities experience—denying us even momentary relief—when we reach an inaccessible shelter or overnight accommodation in the midst of an emergency must be avoided at all costs. We need assistance with replacing vital—and pricey—durable medical equipment when we return home. When we rebuild, we require additional resources to make our homes accessible. Throughout it all, many of our community members will require personal care. Symbolic gestures are worse than ineffective. In this case, tokenism can be lethal.

Founded in 2019 and drawing important lessons from relief initiatives responding to Hurricanes Harvey and Maria, United Spinal Association’s program Ready to Roll has diligently worked to protect our community where these disasters strike, and help pick up the pieces in their aftermath. With the generous support of the Neilsen Foundation, Ready to Roll has made a difference across the nation at all stages of preparation and recovery from natural disasters. Thanks to United Spinal and the Nielsen Foundation, thousands of disaster readiness starter kits have made their way to members of our community. We have provided assistance to wildfire survivors out West, wheelchairs to hurricane victims in Puerto Rico and the Gulf, and helped rebuild homes in Louisiana. However, we know this is only the beginning of an era, and increased advocacy and government action must buttress the commitments of organizations like United Spinal to preparedness and reconstruction.

There are some important developments on the horizon that United Spinal is fully behind. One bill, the Disaster Relief Medicaid Act, would ensure greater continuity of care and additional support for people with disabilities displaced by disasters. Then there is the REAADI for Disasters Act, which ensures that people with disabilities are key stakeholders, representatives and decision makers with Federal, State and local governments as well as with non-governmental groups in the preparation and planning, response, recovery and mitigation phases of disasters. Disaster preparedness grants should be established with the Centers for Independent Living as well as grants for training and technical assistance. The participatory dimension of the bill is fantastic because it makes disaster readiness and response a form of democratic civic action, rather than a matter left up simply to agency professionals.

For people with disabilities to be full agents of change in stopping global warming and reducing pollution, we need those solutions to be developed in a participatory way in the nongovernmental and private sector, as well. If our input is heeded from the first instance, we can avoid situations such as when the banning of plastic straws was up for debate in many major municipalities across the world and disability rights activists ended up at loggerheads with environmentalists. Environmentalist organizations need to make space for perspectives from the disability community, and likewise, disability rights activists need to be welcomed into environmentalist and conservationist organizations as equals.

What is not a point of contention is that an enormous space has opened up for green innovation—and the products upon which people with disabilities rely to live independently could be a part of it. We need to use our proven abilities as consumer advocates to explore the possibilities of equipment that runs on clean, renewable energy and to urge the manufacturers with whom we partner to reduce their carbon footprint wherever possible. We also need to capitalize on our collective experience fighting for accessibility in transit and the built environment to make sure that green infrastructure isn’t exclusionary.

We must draw on the proven strengths of our community as advocates and thought-leaders to work with the government and disability organizations to keep each other safe in the face of increasing climate turmoil and collaborate with the movement for climate justice and socially-responsible corporations to fight for a thriving planet for future generations. One of the things I love about our community is the strong sense of responsibility we have towards one other. We need to marshal that in helping each other survive, rebuild and endure the consequences of man-made climate change.


Policy Corner

The Federal Emergency Management Agency (FEMA) has an Office of Disability Integration and Coordination which provides federal, state, local, tribal and territorial governments, the public sector and non-profit organizations with the tools, training, resources and strategies necessary to help ensure that people with disabilities can participate in, and benefit from, programs and services during all phases of emergency management.

Unfortunately, FEMA has not been able to live up to its mission due to staffing and funding limitations which has a direct negative and potentially dangerous impact on people with disabilities.

Disability advocates are in the process of reintroducing a version of the REAADI for Disasters Act for the new Congress next year, see below. United Spinal Association supports the two federal bills below. Slightly revised versions of the bills below will be introduced in the new Congress next year.

Real Emergency Access for Aging and Disability Inclusion for Disasters Act or the REAADI for Disasters Act (H.R. 4938 – introduced by Rep. Langevin (D-RI)/S. 2658/introduced by Sen. Casey (D-PA):

  • Requires the establishment of an advisory committee that includes disabled individuals and older adults to oversee the use of funds made available by this bill;
  • Allows states to contract with Centers for Independent Living to provide services and support to disabled individuals in preparing for hazards;
  • Requires the Department of Health and Human Services to award grants to carry out projects of national significance that, among other things, create opportunities for disabled individuals and older adults to directly contribute to disaster preparedness, recovery, and mitigation;
  • Modifies and expands the membership of the National Advisory Committee on Individuals with Disabilities and Disasters to ensure that it represents the diversity of the disabled and older adult communities; and
  • Establishes the Disability and Disaster Preparedness Advisory Commission to review settlement agreements involving potential violations of the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990.

Disaster Relief Medicaid Act (H.R. 4937 introduced by Rep. James Panetta (D-CA)/S. 2646 introduced by Sen. Casey (D-PA):

  • Provides uninterrupted access to Medicaid services when recipients must evacuate across state lines, which increases health maintenance and community living, and prevents institutionalization during disasters;
  • Helps states meet the needs of Relief-Eligible Survivors through a two-year 100% federal match for displaced individuals;
  • Provides technical assistance and support to develop innovative state-wide strategies to respond to an influx of out-of-state individuals;
  • Creates a grant to help states develop an emergency response corps to provide home and community-based services; and
  • Guarantees that a 100% federal matching payment for medical assistance is provided to states in disaster areas.