Mint green text on deep blue background, reads: National Council on Disability COVID-19 letter to HHS Office for Civil Rights

National Council on Disability COVID-19 letter to HHS Office for Civil Rights

March 18, 2020

Roger Severino
Director, Office for Civil Rights
U.S. Department of Health & Human Services
200 Independence Avenue, S.W.
Washington DC 20201

Dear Mr. Severino:

On behalf of the National Council on Disability (NCD), I write on a matter of urgency regarding non-discriminatory access to life-saving medical care for people with disabilities who contract COVID-19. Due to the concerns detailed in this letter regarding the predicted impact of COVID-19 on people with existing medical conditions coupled with predicted rationing of life-saving care, NCD requests that the Office for Civil Rights (OCR) quickly issue a notice to physicians and hospitals specifying the applicability of non-discrimination requirements of the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act in making treatment decisions. When OCR talks, the medical community listens, and OCR has a window of opportunity now, before physicians become overwhelmed with COVID-19 patients, to provide necessary information to the medical community about the provision of non-discriminatory care.

Current projections show that the need for intensive medical care for victims of COVID-19 will far exceed the resources of the US healthcare system, and medical professionals are already predicting the certainty that emergency and intensive care will have to be rationed. The lack of resources to treat the population who will contract COVID-19 creates a deadly outlook for people with disabilities.  This is not hyperbole – the people most susceptible to COVID-19 have medical conditions, e.g., weakened immune systems, heart disease, diabetes – exactly the people who will be most impacted by emergency or intensive care rationing. Physicians will have to make decisions on who will get life-saving care, and who will not.

Unfortunately, as OCR knows, people with chronic illnesses and other disabilities have been  left behind, denied resources to survive, and as a result, have suffered great losses of life because of lack of emergency preparation that respects every life, and by outright discrimination by medical practitioners who, through ignorance of the law or due to the belief that people with disabilities are less valuable, and therefore less deserving of medical care, than those who are not. Such prejudice has fed into the belief that people with disabilities, especially the most weak and vulnerable, should be put out of their misery. NCD opposes these views and any medical actions that implicitly and explicitly disregard the dignity of the lives of people with disabilities. These beliefs have always been dangerous – but COVID-19 raises NCD’s concerns to an unprecedented level.

OCR is aware of the historic and persistent discrimination against people with disabilities in healthcare. We documented this issue in our recent reports on bioethics and disability, explaining that the lives of persons with disabilities continue to be devalued in the medical profession due to pervasive negative biases and inaccurate assumptions. The belief that people with disabilities have a lesser quality of life and are less valuable to society, has led to deadly consequences – physicians choosing to provide medically scarce resources to non-disabled or healthier people – a violation of human rights, civil rights and a reinforcement of the belief that people with disabilities are lesser-than and less deserving of life itself.[1] Indeed, recent articles regarding the likely response to COVID-19 published by major media outlets are already predicting – unapologetically – that the lack of capacity of the US healthcare system is going to result in rationing of life-saving care for people with chronic illnesses and pre-existing disabilities.[2] Such discourse  has deep historical foundations that has led to discrimination and access to healthcare, including life-saving care, for people disabilities throughout the nation’s history. Once again, society, including physicians, is already accepting the conclusion that this group will be denied the right to life due to a lack of resources. Once again, it is a forgone conclusion that people with disabilities are the most expendable group. Once again, as in previous natural disasters and medical crises, people with disabilities are being told to prepare to die.

OCR has recognized the long-standing discrimination against people with disabilities, taking action to address discrimination on a case by case basis, but the world has changed – we are experiencing a quickly progressing medical crisis which will disproportionately impact people with disabilities on a broad scale. OCR should rapidly head off what could be yet another time in US history when people with disabilities are left to die because medical decisions remain infused with disability bias or because physicians are not aware of their responsibilities under the Americans with Disabilities Act, the Rehabilitation Act, and the Affordable Care Act. More evidence of the need for immediate OCR action is found in a cursory review of State protocols for standards of medical care for times of crisis – like a pandemic – that show that people with existing disabilities will be, if the plans remain the same, discriminated against in the provision of COVID-19 care.[3]

Because this historic pandemic disproportionately threatens the lives of people with disabilities, NCD strongly urges OCR to immediately issue a notice to the nation’s medical providers of their obligations for non-discriminatory medical care under the ADA, the Rehabilitation Act, and the Affordable Care Act. The notice should include a statement on the historic and deep-seated biases and stereotypes about people with disabilities that have resulted in eugenics and lack of life-saving care, ask physicians to be mindful of this when making medical treatment decisions, and make clear that, even in an environment where health care resources are limited, the civil rights of people with disabilities cannot be suspended or limited.

Thank you for your work to ensure access to medical care for all people and your efforts to address disability discrimination in health care. OCR’s efforts have improved the lives of people with disabilities and your leadership is valued and appreciated.

If you wish to discuss this with me directly I would be delighted to do that at your convenience. However, if a member of your team would like to discuss this with a member of my team please have them contact Lisa Grubb, Executive Director and CEO at lgrubb@ncd.gov, Joan Durocher, General Counsel and Director of Policy at jdurocher@ncd.gov, and  Ana Torres-Davis, Senior Attorney-Advisor at  attoresdavis@ncd.gov.

Respectfully,

Neil Romano
Chairman

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Paralysis, Disability, and Disaster Readiness

Hi! I’m Ruf ‘n’ Ready, the Disaster Readiness Service Dog!

Disaster Readiness may feel like a huge challenge for people in the paralysis community, with all the other challenges in our lives. I’m here to help you get ready!

Disaster or emergency events like floods, fires, tornados, earthquakes and other natural and human-caused events are especially hard on people with paralysis, along with other disabilities. Among other things, people with paralysis should:

  • Connect with neighbors, friends, family and caregivers to check in and help you out if a disaster hits. Support networks are vital before, during and after disasters!
  • Gather emergency supplies to shelter in-place or take with you, if you need to evacuate. These include basic emergency supplies like water, non-perishable food, and flashlights – as well as paralysis-related resources like wheelchair chargers, medical goods and bathroom care supplies. Pack today!
  • Develop an evacuation plan. Do you live on upper levels of an apartment building? Then have a backup wheelchair in your garage and a plan to get down the stairs! Figure out transportation ahead-of-time, whether it’s an emergency driver or understanding your city’s resources. Transportation plans can keep you safe!
  • Identify shelter and related needs after a disaster. You may need to leave your home for days, weeks or more. Having accessible, inclusive place to stay is a must!
  • Sign up for local emergency notifications. Your city, county or state may reach out over radio and TV or through email, phone calls and text messages. Enroll in emergency lists to know when you may need to evacuate!

Remember, planning ahead for our safety is crucial! Start now, because you never know when a disaster could come your way.

The educational materials below can help you get ready! You’ll feel better about disaster readiness when you start planning for your own (and others’) safety and well-being.

We are grateful to the Christopher and Dana Reeve Foundation for their generous resources to create this and many other projects to ensure our health, safety, participation and inclusion in our world. For more information on their fantastic work, visit www.ChristopherReeve.org

Tri-fold hand-out

This one-pager can be downloaded and copied for everyone! It introduces the most important points for readiness, including items for your “Go Bag” and tips for awareness and planning. Keep one on hand for yourself or print some for your local friends and organizations.

Disaster readiness trifold

Large print pamphlet

This pamphlet includes all of the great recommendations in our tri-fold, with extended information and larger text for people with low vision and anyone that would like info on a full page. Download it, read it and share with your friends!

Disaster Pamphlet – large print

Disaster readiness video

This 10 minute video, hosted by me, Ruff ‘n’ Ready, is a great way to learn about disaster readiness. Post this on your website! Share it with friends! Spread it over social media! Consider hosting a gathering with people in your community, Independent Living Center or any group, to show the video and have a discussion — or a party! This will help you and others plan together and support each other to stop putting it off and get ready!

Disaster Readiness Policy Paper

Disability Disaster Readiness – Overview & Recommendations – WID2019

This document explores the history and the range of social and personal factors that affect our community’s experience of disasters and emergencies. Extensive policy and practice recommendations are offered to support community readiness. This paper can be distributed to policy-makers, agencies, and first-responder organizations in your community to alert them to important changes they can make to protect our safety and well-being. It can also be used by paralysis advocates to learn what to push for in their communities!

Webinars

Here are recordings of two webinars we presented, one directed to people with paralysis and their families, and one directed to disability agencies, about readiness for our communities. View the videos below to learn more!

Disaster Readiness and Paralysis – a Webinar for Individuals and Allies

Disaster Safety for People with Paralysis – Webinar for Professionals and Advocates

Thank you for visiting our site and learning about paralysis and emergency preparedness. This can help you make your own plans – and create inclusive disaster readiness in your community. Please plan ahead, spread the word and protect people with paralysis everywhere!

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Existing Resources

There is already existing research on climate change and disability, including literature on general connections, social factors, disaster preparedness and other issues. Below is a list of resources that we have found online through our research: our original compilation was assembled in 2016, and we have added more as time goes on. The amount of articles and literature continue to grow, so if you find any more articles or research related to climate change and disability, please let us know by emailing Alex Ghenis at alex@wid.org and we will add those resources to this page.

Articles, Editorials, and Info Pages

Disability and Disaster Response in the Age of Climate Change David M Perry, PS Mag. Dec 2017

It’s Time to Recognize Climate Change as a Disability Rights Issue Tiffany Yu, Rooted in Rights. Dec 2017

Disability, Climate Change and Natural Disasters (podcast) Disability Rap podcast. Oct 2017

Disability Inclusion in Climate-Related Disaster Preparation Marcie Roth, Hilton Prize Coalition. Sep 2017

The Disabled Are Probably the Most Vulnerable to Climate Change Effects Robin Scher, TruthDig. Apr 2017

Climate Adaptation, Adaptive Climate Justice, and People with Disabilities Alex Ghenis, Union of Concerned Scientists guest commentary. Apr 2017

The End of the World as We Know It Alex Ghenis, New Mobility Magazine. Mar 2016

 “Resilience, Disability, And Climate Change: What is the Role of Education” – A Keynote Speech at The Pacific Rim International Conference on Disability and Diversity. Kathryn Ross Wayne. 2014

Voices of People with Disabilities Must Be Heard in Climate Change Adaptation Debate Kate Wilson, International Institute for Environment and Development. May 2014

Economic Inclusion of Disabled People Key to Climate Resilience Elizabeth Braw, The Guardian. Nov 2013

Climate Change and Disability: Prezi Active Presentation Aruna Dahal. Sep 2011

A Just Climate: Our Responsibility to Act Caritas Australia. 2009

BBC Ouch!: Where Disability Meets Climate Change Kate Ansell, BBC Ouch! 2009

Hasaan Foundation: Disabilities and Climate Change Hasaan Foundation

Academic Articles, Papers, & Research

Environmental Citizenship and Disability Equality: The Need for an Inclusive Approach Deborah Fenney Salkeld, Environmental Politics Journal. Dec 2017

Disability and Climate Resilience: a Literature Review Smith, Simard, Twigg, Kett, and Cole. Leonard Cheshire Disability & UK Aid. Apr 2017

A Policies of Inclusion and Exclusion for the Persons with Disabilities (PWDs) interlinked with The Climate Change Adaptation: Case Study of Bangladesh Natasha Israt Kabir, International Journal of Multicultural and Multireligious Understanding. Aug 2016

CQ University Grant Announcement for Developing Climate Change Vulnerability Index for Queenslanders with Disabilities. CQ University. July 2014

Understanding Impacts of Climate Change and Adverse Weather Effects on People with a Disability and Their Carers Rae Walker, Enliven (Australia). Jul 2013

Climate Change, Water, Sanitation and Energy Insecurity: Invisibility of People with Disabilities Gregor Wolbring & Verlyn Leopatra, Canadian Journal of Disability Studies. Aug 2012

Enhancing Persons with Disability Responses & Participation in the Climate Change Mitigation – A Grant Program Received by United Disability Empowerment in Kenya. (Satisfactorily Completed 2011) The GEF Small Grants Program, UNDP. 2011

A Culture of Neglect: Climate Discourse and Disabled People Gregor Worbling, Media and Culture Journal. Oct 2009

Disability and Climate Change: Understanding Vulnerability and Building Resilience in a Changing World CBM

Climate Change and Disaster Risk Reduction – Mainstreaming Disability CBM

Access to Sustainable Lifestyles: Disability and Environmental Citizenship Deborah Fenney Salkeld, Working Paper

Sustainable Lifestyles for All? Disability Equality, Sustainability and the Limitations of Current UK Policy Deborah Fenney Salkeld, Working Paper

Policy Papers

Getting It Wrong: An Indictment with a Blueprint for Getting It Right The Partnership for Inclusive Disaster Strategies. May 2018

IDA and IDDC Advocacy Package: Engagement in The Post-2015 Development Agenda Inclusive of and Accessible to Persons with Disabilities. International Disability Alliance (IDA) and International Disability and Development Consortium (IDDC)

E-Discussions

The Impact of Climate Change on People with Disabilities: Report of the 5-Day E-Discussion Hosted by GPDD & World Bank The Global Partnership for Disability & Development (GPDD) and The World Bank (Human Development Network – Social Protection/Disability & Development Team (July 8, 2009)

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Partnerships

Officials and planners around the world are preparing for oncoming climate change, and we want to help. The New Earth Disability team aims to work with other nonprofits and government agencies to incorporate disability into climate change-related efforts at every level possible. This could include anything from drafting disability sections into planning documents, to connecting disability and climate adaptation stakeholders at different geographies. We are also interested in specific topics ranging from long-term infrastructure planning over to disaster readiness and response (DRR) and other emergency efforts.

Some of our past, current and future partnerships include:

  • Providing input for government climate impact assessments and planning processes. This includes National Climate Assessment and California State-level activities (such as the Adapting to Rising Tides initiative) .
  • Educating disaster planners and the public about including disability in disaster readiness. Our staff has worked with disaster shelter managers to train Functional Assessment Service Teams (FAST) for well over 5 years. We also are developing disaster readiness guides for individuals with paralysis, with the generous support of the Christopher & Dana Reeve Foundation.
  • Researching regional resilience needs of people with disabilities and developing guidance for agencies and government planners. Our team is working alongside the Metropolitan Transportation Commission in the San Francisco Bay Area to research the transportation needs of the Bay Area disability community – and develop plans and educational materials to build more dynamic transportation systems for people with disabilities.

We are excited to partner with other entities, whether through grant-funded initiatives, direct consultation or as part of an official proceeding. For more info please contact Alex Ghenis at Alex@WID.org or Marsha Saxton at marsax@wid.org

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Education Materials

Public education is a cornerstone of any successful initiative, and we strive to engage the public through our materials and productions. Our team is committed to creating materials, videos and other educational resources about climate change and disability to distribute widely and bring the public on board. Of course, we want to connect to some specific groups – the disability community, climate change advocates, and policymakers – but we hope to reach the broader public as well. This part of our work aims to meet many goals: raising awareness, engaging advocates, and providing the information needed for people to prepare for climate change at a personal level. Among other things, we have created or are pursuing:

  • Editorials and other articles highlighting the disability-climate change connection
  • Information materials (such as handouts or worksheets) showing steps that people can take to increase personal climate resilience
  • Videos including shorter features and longer documentary pieces
  • Webpages with links, resources and more detail about the connections between climate change and disability

It is always amazing to see the impact that education can have on people’s lives – because when the public is aware of these important issues, they will buy in to support real change. And when they are given the resources to prepare on their own, individuals with disabilities can be much more resilient when climate change comes their way. We are always interested in partners who can help develop these materials and spread the word – if you would like to join us, please email Alex Ghenis at Alex@WID.org. Thanks!

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Educational Series

Our NED team has presented at many conferences and events around California and other locations, including the Pacific Rim International Conference on Disability & Diversity in Hawaii and the American Public Health Association conference in Atlanta, Georgia. We strive to educate the public and major stakeholders about the important connection between climate change and disability through presentations, webinars, panel discussions and more. So far, this project has received widespread recognition as an incredibly important topic that has cross-cutting connections in many areas:

  • Disaster preparedness
  • Adaptation & infrastructure planning
  • Social and environmental justice
  • Disability rights
  • and more…

We are excited to partner with any conference organizers or other event planners to raise awareness about the intersection of climate change and disability. If you would like to partner with us and expand this social justice issue, please contact Alex@WID.org or marsax@wid.org

Some of our educational materials and outreach include:

Brown Girl Green podcast – guest appearance

NED staff Alex Ghenis and Marsha Saxton joined the “Brown Girl Green” podcast in May 2018 to discuss environmental justice and people with disabilities. Our team loves to participate in interviews and thanks Kristy, the BGG host, for the invitation! You can also check out the rest of the podcast’s archives.

Climate change and Disability in California: January 2018 Webinar

This webinar looks at the connection between climate change and disability, recent experiences in California, and the state’s health equity goals. Alex Ghenis from WID is joined by Vance Taylor from the Office of Access and Functional Needs in the California Gov.’s Office of Emergency Services, and Linda Helland from the Office of Health Equity at the California Department of Public Health. The presentation starts just over 6 minutes in, so jump forward to get started!

Climate Change and Disability: Presentation and Workshop

This video features highlights from a workshop in summer of 2017 covering climate justice and inclusive climate resilience. Nearly 40 attendees listened to presentations from Alex Ghenis and Marsha Saxton and had breakout discussions to find solutions for the future. The video includes thoughts from several workshop attendees.

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Heat Waves and Extreme Heat

The Danger of Extreme Heat

Extreme heat events and heat waves can be very dangerous for human health. This is because our body temperature needs to stay at about 98.6°F, otherwise our organs and muscles may become stressed. When outside temperatures are low, our metabolism may speed up to increase our body temperature, and we can put on more clothing or turn up the room temperature. When the temperature is too high, our metabolism may slow down, we will sweat to radiate away heat (evaporating sweat takes heat with it), and we may turn on a fan or air-conditioning to cool off. However, if the temperature is too high and/or so humid that our sweat cannot easily evaporate, our bodies may begin to overheat. Single extremely hot days or several hot days in a row can lead to heat stress, heat exhaustion, or in the worst cases, death. (This is especially harsh when heat waves also include warm nights, so individuals don’t have any time for their bodies to cool off). In fact, the mass European heat wave of 2003 led to an estimated 70,000 excess deaths over a three-week span due to people’s difficulty keeping their body temperature cool enough to hold on.

Climate Change, Extreme Heat and People with Disabilities

Climate change is going to dramatically increase the frequency and intensity of extreme heat events in the coming years. According to the Centers for Disease Control, “most definitions [of an extreme heat event] refer to an extended period of time (several days or more) with unusually hot weather conditions that potentially can harm human health.” Under a low-emissions climate change scenario where temperatures increase 2°C (3.6°F) over the next several decades, the length of the longest extreme heat events may grow by a full week, and some parts of the United States (mainly the Southwest and Great Plains) will see over 60 more days per year above 100°F. A higher-emissions scenario of 3.5°C (6.3°F) would see the longest extreme heat events increase between 10-20 days, and most of the US would experience at least 30 extra 100°F-plus days per year, with a good portion seeing over 100 more days annually. (For more details, check out the CDC’s full publication)

a series of 3 graphs comparing a range of temperatures. Each has a current “bell curve” distribution of cold to hot temperatures, with a second bell curve showing different climate scenarios. The first, “increase in mean,” has the bell curve shifted slightly to the right and has “fewer cold extremes” and “more hot extremes.” The second, “increase in variance,” shows a shorter and wider new bell curve with “more cold extremes” and “more hot extremes.” A final graph, “increase in mean and variance,” shows a shorter and wider graph that is shifted to the right, has about the same cold extremes and dramatically more hot extremes.
These 3 graphs from the International Panel on Climate Change (IPCC) show how climate change can influence the distribution of hot and cold days. Daily temperatures (for daily maximum and nightly minimum) for any given area exist on a “bell curve,” where a few days a year are extremely cold and a few are extremely hot, and there are more days closer to the average. Because climate change increases average temperatures, it will shift the curve to the right (figure a), leading to fewer cold extremes and more hot extremes. Climate change may also lead to more variable temperatures. Figure b shows that with more variability when averages stay the same, there is both more cold extremes and more hot extremes. When both averages and variance increase (figure c), as is likely to happen, cold extremes are likely to stay about the same but there will be many more hot extremes. | IPCC AR5
a set of graphs comparing the distribution of temperatures for the time periods of 1951-1980 and 1981-2010. The top graph shows daily minimum temperatures and their probability, while the bottom graph shows daily maximum temperatures. In both graphs, the 1951-1980 timeframe was a relatively even bell curve centered at 0°C and going from -15°C to 15°C. The 1981-2010 timeframe is shorter and wider and shifted to the right, with fewer extremely cold events and more extremely hot events.
This set of graphs from the IPCC compares the distribution of temperatures for the time periods of 1951-1980 and 1981-2010. The top graph shows daily minimum temperatures and their probability, while the bottom graph shows daily maximum temperatures. In both graphs, the 1951-1980 timeframe was a relatively even bell curve centered at 0°C and going from -15°C to 15°C. The 1981-2010 timeframe is shorter and wider and shifted to the right, with fewer extremely cold events (-5°C or less) and more extremely hot events (5°C or more). Average nighttime minimums also increased more than average daily maximums. This matches with the “increase in mean and variance” scenarios in the first set of IPCC graphs. | IPCC AR5

People with disabilities are especially vulnerable to extreme heat events for many reasons. Assorted disabilities often make it difficult to regulate body temperature: for example, people with high-level spinal cord injuries have a lower ability to sweat to cool their body temperature; meanwhile, individuals with chronic health conditions may have difficulty with any physiological stress, which certainly includes extreme heat. Other social factors also make an impact. People with disabilities experience disproportionate poverty levels and live in lower-quality housing on average, compared to those without disabilities. This often means they have less access to air-conditioning at home, or may have less money to pay air-conditioning bills if they do have A/C. Some cooling shelters may not be easy to get to for people relying on public transit or who are isolated at home – and those cooling shelters may be inaccessible and/or not have necessary medical or other disability supports as well. The combination of physical and social factors means that people with disabilities are, on average, more vulnerable to heat stress, heat exhaustion or death during extreme heat events.

Extreme Heat and Inclusive Climate Resilience

Comprehensive climate resilience plans should address extreme heat through public education, city and regional planning, smart housing development, and providing access to air-conditioned cooling centers. Because of the unique experience of people with disabilities, resilience initiatives should address their needs during hot days and heat waves, from living conditions to immediate responses. Examples include:

  • Pursue educational outreach about best practices during heat waves (i.e. keeping hydrated, being in the shade or finding air-conditioning, and limiting exercise), including in accessible formats such as braille and screen-reader-compliant digital documents.
  • Provide funding to support people with disabilities to install air-conditioning and pay electric bills during especially hot stretches of time. Government can especially support retrofits of subsidized and public housing for improved insulation and air conditioning.
  • Guarantee that newer housing with quality insulation and/or air-conditioning is fully accessible. For example, all new apartment and condo buildings should ideally have automatic door openers at the ground level and a designated number of units with wheelchair-accessible, roll-in showers. New buildings may also set aside some units for low-income residents.
  • Take active efforts to inform the disability community about upcoming extreme heat events through social networks, government agencies and community organizations. Provide recommendations for maintaining health and information about cooling shelters; ensure that all announcements are available in accessible formats.
  • Ensure that there are sufficient accessible cooling shelters or public buildings with air-conditioning (i.e. libraries and community centers), including with disability-related supports and staff trained in disability etiquette. Agencies or organizations can also facilitate travel to shelters as needed, for example through paratransit or even volunteer networks.
  • The front of St. John's community center in Portland, Oregon. This building has a ramp with handrails and green plants out front.
    Public “cooling shelters,” such as libraries and community centers, should be fully accessible and easy for people with disabilities to reach by car, public transit or paratransit. | Wikipedia (Author: Another Believer)

    For a more in-depth overview of how climate change will lead to more heat waves and extreme heat events, and what that means for people with disabilities, please visit the PDF archives of the New Earth Disability blog’s two-part Heat Wave series!

Related Links

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Climate-Related Migration and Displacement

Let’s face it, moving can be difficult for anybody. Loading up furniture, clothes, and personal items, driving or flying to a new home, and re-establishing roots takes time and energy. This can be especially tough for people with disabilities, who need to locate a home that meets their needs (i.e. with a ramp or elevator, if they use a wheelchair), secure transportation, and often rebuild personal support networks and sign up for government services in a new county, state, or even country. Unfortunately, many more people will need to move in the future because of the effects of climate change, which will impact people with disabilities in dramatic ways.

Climate Change and Migration

The effects of climate change – such as storms, rising sea levels, and drought – can often push people to find new homes in safer, more stable climates. This “climate migration” can happen for several reasons. Some include:

  • Being displaced by natural disasters (i.e. evacuating ahead of a hurricane or leaving a town after it is destroyed by forest fires) and never returning home.
  • Leaving areas with few resources needed for survival, such as limited food or water in regions affected by drought.
  • Abandoning areas experiencing chronic flooding due to rising oceans. This is especially relevant in low-lying coastal areas such as southern Florida and Bangladesh, or on islands close to sea level. In some cases, these areas may be permanently covered by the ocean – in others, occasional “nuisance flooding” from high tides or severe flooding from storm surges becomes so problematic that people leave.
  • Climate-related factors can sometimes lead to violence – for example, through conflict over limited water resources or arable land during drought. If individuals try to escape this conflict and become refugees, they could be considered “climate refugees” to some extent.

Climate-related migration can either be “internal” (within a country) or “external” (between countries). An example of internal migration is farmers leaving rural areas for cities when crops are affected by climate change; in fact, this was often the case in Syria, which some experts consider a factor that contributed to violent conflict and the Syrian civil war. External migration is expected to be a coming problem in Bangladesh, a country in South Asia almost entirely within a few meters of sea-level. Its 163 million residents may be displaced as the oceans rise, and as the country is surrounded by other nations (India and Myanmar/Burma), Bangladeshis will likely face legal or other barriers as they try to migrate to escape flooded land.

According to the International Organization on Migration, there will likely be upwards of 100 million “climate migrants” in the coming decades – and that number may reach nearly 1 billion by 2050 under the worst circumstances. This number can be hard to calculate, as people may have many reasons for moving and it can be hard to attribute specific environmental impacts (and related social or economic changes) solely to climate change. Either way, the migration numbers will be significant. These mass population shifts are likely to stoke social and political tensions, stress economies and resources, and in the worst cases lead to conflict. Areas of in-migration may find it difficult to support new residents with food, water, jobs and other necessities; areas of out-migration will see their economies shrink with related consequences. It is important to address this proactively.

Luckily, there can be some adaptive responses. Increasing resilience to climate impacts can help residents remain in-place and not have to migrate under climate stresses; reinforcing economies and infrastructure for immigrants can support population growth; and building international agreements for the human rights of migrants can support their safety and well-being. These efforts and more will stabilize economies, environments, and political relationships worldwide.

A crowd in Cambridge, UK, protests in favor of accepting refugees from Syria and other countries. There are already political struggles around managing refugee crises, and a growing number of migrants from climate-related factors may create similar tensions. | The Cambridge Student/John Sutton

Climate Migration and Disability

People with disabilities already face difficulties when they move, whether it is through finding accessible shelter and transportation, getting new jobs, or signing up for medical care and social services. The disability community may encounter even more barriers when moving is unplanned or happens on short notice, as often is the case with climate-related migration. Some of the many issues people with disabilities may experience during climate migration include:

  • Having little or no access to accessible transportation that can support them, their mobility equipment, and necessary supplies as they migrate. This can be difficult enough with time to plan – it is especially hard when people must escape extreme weather events on short notice.
  • Being unable to find appropriate housing that meets disability-related needs, including physical accessibility and proximity to public transportation and medical/social services. In many cases, people may be forced to live in emergency shelters for extended periods of time, without appropriate physical access and disability services.
  • Losing contact with personal support networks including family, friends, and caregivers. This may also be the case if members of the support network choose to relocate, but the person with a disability does not move. Losing support networks can jeopardize people’s independence, health, psycho-social balance and economic well-being.
  • Being unable to maintain healthcare or other social services as somebody moves across cities, counties, states, or to a new country. This is often difficult considering the patchwork, location-based nature of healthcare and social services (in the US, many government benefits are managed at the county level and there can be wait-times of weeks or months when people reapply in new locations). Non-citizens and new immigrants face extra barriers to enroll in government services, further jeopardizing health and independence.
  • Facing unemployment or under-employment after moving to a new location. Unfortunately, the job market can be difficult to navigate for people with disabilities: there may be limited job opportunities that fit an individual’s personal abilities, or in some cases there may be subtle or explicit discrimination in hiring and management. Securing a new job that “works” and provides a reasonable income can take time or be nearly impossible, depending on the situation.
  • Having immigration requests rejected or delayed based on an individual’s disability. This is often the case with job- and education-related immigration restrictions (i.e. H1B visas), combined with the nature of available jobs and the view that people with disabilities are “unfit” for employment. If a person with a disability is turned away at the border but their family or caregivers are admitted, it can jeopardize their well-being and survival.
An elderly Filipina woman sitting in a manual wheelchair is pushed up ramp in the back of a transport airplane by American troops. Her hair is blowing in the wind.
United States troops help a woman with a disability evacuate the Philippines during Typhoon Haiyan in 2013. Extreme weather can displace people temporarily or permanently, and finding accessible transportation to evacuate may be difficult. | U.S. Navy photo by Mass Communication Specialist 2nd Class Daniel M. Young

Best Practices and Next Steps

Often-times, the systems that people with disabilities build around themselves to maintain quality of life (including housing, government benefits, personal support, employment and more) can take years to assemble and are very tied to their place of living. Having to relocate may endanger these systems, and ultimately independence and well-being. On the flip-side, if people with disabilities choose to remain in the face of climate stressors, they may see support systems slowly break apart or simply experience dangers given extra vulnerability to climate effects (such as heat waves). Considering this, individuals and governments can take actions to support people with disabilities faced with the prospect of climate-related displacement. Some actions may include:

  • Guarantee access to appropriate, accessible transportation that can support individuals, mobility equipment, and other necessary supplies through evacuation and planned migration. Provide emergency transportation in a timely manner, especially in the face of climate-related natural disasters such as hurricanes and wildfires.
  • Assist people with disabilities, their families and support networks to stay connected through migration wherever possible. If support networks will break up as people with disabilities move, provide access to social services, caregivers, communication and other resources to help maintain independence and well-being.
  • Ensure that there is accessible temporary and permanent housing along migration pathways and at destinations. A large part of this is expanding the accessible housing stock in general, as building homes is time- and resource-intensive and it may not be possible to predict all areas of in-migration. Temporary housing including shelters, room-shares (i.e. airbnb), and motels are also important and provide some flexibility. These must be accessible and provide appropriate disability supports as well.
  • Address human rights issues in law and policy, specifically aimed at the connection between climate migration and people with disabilities. Currently, the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) addresses “situations of risk and humanitarian emergencies” and “liberty of movement and nationality.” The United Nations Convention and Protocol Relating to the Status of Refugees also references equality for people with disabilities in refugee situations. However, the Convention and Protocol only cover refugees from conflicts, but not environmental or climate migrants. International conventions and human rights laws can be built around the UNCRPD and Convention and Protocol on Refugees, but should specifically address climate migrants with disabilities (and climate migrants in general).
  • Simply reinforcing existing human rights and disability rights laws and policies can benefit climate migrants, even if there are not yet international agreements specifically on climate migration and disability. Guaranteeing access to healthcare and social services, protecting against discrimination, supporting employment, etc. will benefit internal migrants who otherwise may face barriers; these actions will also support the needs of international migrants if they are implemented correctly.
  • Support economic vitality and independence for people with disabilities in general. Personal independence and financial stability are large factors in one’s ability to manage climate stresses and avoid the need to migrate, and also manage the individual requirements that come with relocating if necessary.
Health insurance is often tied to residency in a country, state or even county. Access to insurance for new residents – through quick applications, transferable benefits or universal coverage – will protect health outcomes for climate migrants. | Nick Youngson/Creative Commons 3

Large-scale migration is one of the most daunting consequences of climate change: it can lead to resource stress, social unrest, economic disruptions, and difficulties upholding human rights. This all is especially dangerous for people with disabilities, who may face discrimination, barriers to movement, and lack of access to necessary housing, employment, services and healthcare. It is important to guarantee those necessary supports and uphold the human rights of climate migrants with disabilities before, during, and after they move.

To find out more about this connection, please read Alex Ghenis’s white paper in the International Organization on Migration’s environmental migration series. We also have available the archive of the three-part series from the original “New Earth Disability” disability & climate change blog.

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NED Blog, Newsletters, Articles & Editorials

The New Earth Disability team has produced many publications over the last several years. NED began as a blog in 2014 and has transformed into a full initiative with research, and ongoing newsletter, public education, and partnerships. Here are some of our existing resources:

  1. The NED blog
  2. NED newsletter archive
  3. Outside research, articles and editorials

The New Earth Disability Blog

The “New Earth Disability” blog was started in 2014 by WID Policy and Research Specialist Alex Ghenis, with the goal of understanding the intersection of climate change and disability. The blog includes several shorter editorials on the need for adaptation and the format of the historic COP 21 climate change Summit in Paris in 2015. There are also two longer research series on heat waves and climate-related migration, with two posts and three posts, respectively.

Editorials on Adaptation

Climate change will progress to some extent no matter how much we reduce our carbon emissions. In these posts, NED covers why it is important to adapt to the coming climate change rather than just focus on limiting greenhouse gas emissions. The blog also addresses why it is important to adapt with a special focus on people with disabilities.

The next piece was originally published on the blog for the Union of Concerned Scientists, who dedicated their work in the month of April to raising awareness about climate change. Thank you for all of your efforts!

Editorials on the 2015 COP21 Paris Summit

The landmark climate change Summit in Paris in the fall of 2015, called the “21st Conference of the Parties” or “COP21,” established a global framework to limit emissions with the goal of staying below 2°C of warming compared to preindustrial levels. The Summit also focused on staying below 1.5°C, if possible. These blog posts reflect on the Paris Summit in two ways: first, the blog say that the summit itself should have put much more focus on adapting and preparing for climate change, rather than just cutting emissions. And second, the blog outlines why setting a goal of 2°C is the wrong way to think: instead, we should be focusing on the amount of CO2 that is present in the atmosphere – and realistically, 2°C is not possible to meet. So, we must move beyond that and sent more realistic goals.

Heat Waves and Extreme Heat (2 Parts)

Climate change will lead to a massive increase in the frequency and intensity of heat waves and extreme heat events. These NED posts outline the causes and consequences of those extreme heat events, including the impacts on human health. It also shows how these disproportionately affect people with disabilities, their health and well-being. And finally, the posts outline some recommendations to protect the health and well-being of people with disabilities as heat waves progress even more into the future.

Climate-Related Migration (3 parts)

It is projected that hundreds of millions of people will be displaced and migrate due to the consequences of climate change, including evacuating from extreme weather events, escaping flooding shorelines, and becoming refugees from conflict sparked by climate factors. This migration will be especially hard for people with disabilities, who may lack access to accessible transportation or housing, experience difficulty maintaining or reenroll in healthcare and social services, or simply be turned away at the border because of their disability. These three posts cover the connection between climate change and migration, what that migration means for people with disabilities, and recommended actions to protect their lives and well-being.

NED Newsletter and Archives

New Earth Disability has a regular newsletter, published several times per year, that can be delivered to your email’s inbox! Please enroll for the current newsletter for NED. A newsletter archive for NED is also available.

March 2018: Climate Change and the Medical/Social Models of Disability: the Philosophical Connections

December 2017: Disability and Disasters: a Troubling Year

February 2017: An Introduction to Disability Climate Justice

Outside Writing

The New Earth Disability team is always working to raise awareness of the connection between climate change and disability. With that in mind, we have produced several academic pieces and other articles for outside publications and websites.

Here are a few of our past publications:

The Environmental Impact of Wheel Life.” Alex Ghenis, New Mobility magazine. September 2018

Disability Inclusion in Climate Change: Impacts and Intersections.” Marsha Saxton and Alex Ghenis, Interdisciplinary Perspectives on Equality and Diversity – An International Journal. 2018

 “Climate Adaptation, Adaptive Climate Justice, and People with Disabilities.” Alex Ghenis, Union of Concerned Scientists guest commentary. April 2017

Making Migration Accessible: Inclusive Relocation for People with Disabilities.” Alex Ghenis, International Organization on Migration Policy Brief Series. June 2016

 “The End of the World as We Know It – Climate Change, Climate Justice and Disability.” Alex Ghenis, New Mobility magazine. March 2016

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Natural Disasters

Climate Change and Natural Disasters: An Overview

Storms and other extreme weather events are some of the most dramatic consequences of climate change; these events can have immediate impacts to the environment, the economy and entire populations. Climate change contributes to extreme weather in many ways, but most are easy to understand. As the atmosphere warms, it can hold more water vapor, leading to denser storm clouds with heavier downpours and more flooding. The energy from warmer oceans can super-power tropical cyclones, hurricanes, nor’easters, and the “atmospheric rivers” that hit WID’s home state of California (among other storms which start over water). Shifting wind patterns and pressure zones tied to climate change can also contribute to faster wind speeds in hurricanes, cyclones, tornadoes and storms of all types. Some climate-linked natural disasters are not necessarily the result of storms: for example, hot, dry weather can increase the chance of wildfires that destroy forests and homes – but because soils are less stable after fires (without healthy tree and plant roots to support soil), heavy downpours in “burn-scar” areas can then lead to mudslides. These factors and more are predicted to increase the frequency and intensity of extreme weather events and natural disasters, although changes will depend on the location’s weather and geography.

A collage of 5 photos showing a large flooded neighborhood, piles of snow with a car in the background, trees on fire, dry land with a lake in the background, and a tornado.
Climate change can contribute to many types of disasters. This collage shows flooding after hurricane, a major snowstorm, forest fires, parched land during a drought, and a tornado coming from a thunderstorm. Disasters can affect economies and endanger lives – these climate-linked disasters are becoming more frequent and intense as the atmosphere warms. | Pixabay/NOAA

Some of the numbers are striking. According to the World Health Organization, “[g]lobally, the number of reported weather-related natural disasters has more than tripled since the 1960s. Every year, these disasters result in over 60,000 deaths, mainly in developing countries.” In the United States, 2017 saw a partial failure of the nation’s tallest dam (Oroville Dam in California), caused by a combination of unprecedented rainfall and engineering problems, which required the evacuation of nearly 200,000 individuals; the 2017 Atlantic hurricane season was one of the costliest on record, with Harvey dumping record amounts of rain in Texas and Maria leading to over 3000 deaths in Puerto Rico; and wildfires in the West burned hundreds of thousands of acres and led to dozens of deaths, followed by mudslides in Southern California when a once-in-250-year storm hit burn scars in the Santa Monica area. Computer models predict that average hurricane speeds will increase 2-11 percent, leading to a greater frequency of the most intense storms (including a predicted 45-87 percent increase in the frequency of category 4 and 5 hurricanes, even though the total number of tropical storms may stay the same or decrease). Hurricanes may move more slowly over warm water, picking up more energy and moisture, which scientists project will also lead to a 20% increase in total precipitation (rainfall) rates. Rising ocean levels also mean that when storms hit land, the water pushed on-shore (called “storm surge”) will reach farther inland and be more destructive.

The impacts of natural disasters on society are widespread. Disasters can cause fatalities and injuries from fires, flooding/drowning, damaged buildings or falling trees, car accidents and more. Disasters often interrupt access to food and clean water (and storms can pollute conventional fresh-water supplies), leading to malnutrition, illness and, in the worst cases, deaths. Damage to infrastructure – such as roads, railways, pipelines, industrial facilities, and the electric grid – can cost billions of dollars to replace or repair. Storm victims may lose access to jobs and income, their homes and personal possessions, and support networks. Many times, individuals may evacuate before, during, or after a storm; some evacuees are able to return home quickly, but some may remain in shelters or temporary housing for months, and others simply choose to reestablish their livelihoods elsewhere. (This “permanent displacement” is a type of the climate migration we mention in an accompanying NED section). Areas with large amounts of incoming evacuees (such as Florida after Hurricane Maria or certain regions of the Philippines after Typhoon Haiyan) sometimes also experience socio-economic tensions. The direct impact from a natural disaster may hit a narrow location in just a few hours – or in the case of some events, such as tornadoes or mudslides, a few minutes – but in the end, the many social, political, resource and economic disruptions from natural disasters can span the entire world and last for years.

A row of damaged electrical power lines leans sideways over a road, surrounded by trees with broken limbs. A car and person are in the distance.
Hurricane Maria hit the island of Puerto Rico on September 20, 2017 as a category 4 hurricane. The storm completely shut down the island’s electrical power grid, leaving all 3.4 million residents without power or relying on generators. As of mid-2018, the electrical grid is still not fully repaired, jeopardizing the island’s economy and its residents’ health. | US Air Force, Master Sgt. Joshua L. DeMotts

“Vulnerable Populations” and People with Disabilities

Various populations are affected by natural disasters in different and dramatic ways. This happens at many scales: wealthy countries are generally more resilient and have more resources to recover than poorer countries do, which means that a greater percentage of the population in developing countries are affected; and within countries or specific disaster-hit areas, poor and marginalized groups (including women, children, people of color, immigrants, people with disabilities, the elderly, and others) tend to be hit harder by disasters than more privileged groups. In the case of foreseeable disasters, such as hurricanes a few days before landfall, wealthier people are more likely to be able to evacuate ahead-of-time and afford shelter as they ride out the storm; more “vulnerable” groups, though, may have to stay home and experience the disaster head-on, see their lower-quality housing damaged or destroyed in the process, and simply not have enough money to rebuild. Research has shown that financially disadvantaged individuals, as well as minorities and other marginalized groups, have higher rates of injury and even death in both the short- and long-term after disasters, and have more difficulty recovering in the wake of those tragedies. (See more from Scientific American on economic divides, The Atlantic on broader inequality, and the National Institute on Health on disasters’ impact on people with health care needs and different racial groups).

People with disabilities are uniquely affected by natural disasters in many complex and overlapping ways. Some of the barriers we face include:

  • People with disabilities are often socially or logistically isolated and may not receive warning of oncoming disasters or instruction on how to manage their personal needs.
  • Individuals with communication disabilities may not have access to evacuation warnings – for example, people who are deaf may not hear sirens during an oncoming wildfire or have access to emergency radios. Once they reach shelters, there may not be communication “accommodations” such as sign language interpreters for deaf individuals or braille materials for blind evacuees.
  • People with disabilities may not have access to appropriate transportation to evacuate ahead of disasters. This may be because they do not have a personal vehicle and rely on public transit and/or paratransit, which may shut down before a disaster or not be available in a timely manner (i.e during fast-moving wildfires). Alternatives evacuation resources – mainly, conventional cars or trucks – may not have ramps or lifts. Finally, individuals with disabilities may have medical equipment such as ventilators, Hoyer lifts, or hospital beds which are difficult to transport.
  • People with disabilities often rely on personal support networks (including family, friends, or paid caregivers) for well-being and independence. These networks may become scattered during disaster situations, especially if members of the support network do not have deep ties to the individual. This can leave PWDs abandoned in the face of a disaster and/or endanger their health and independence during recovery.
  • Personal disaster readiness guidance (i.e. brochures or websites) may not be fully accessible to people with sensory or cognitive disabilities, or those without access to the Internet because of financial difficulties. This guidance may also not address the specific needs of people with disabilities, such as finding accessible evacuation and medical needs.
  • People with disabilities, including “leaders” from the disability community and disaster readiness experts, are often left out of disaster planning efforts. This takes away an important voice and source of insight to develop plans that meet the needs of the disability community.

Many disability accommodations require extra funding – for example, sign language interpreters in shelters or providing medically-appropriate beds. Government and nonprofit funding often doesn’t prioritize these needs, even when they are legally required under the Americans with Disabilities Act (ADA) and other federal laws.

This FEMA registration area was set up in Georgia after major flooding in 2009. It allows for registration on computers and provides a dedicated phone line for individuals who are speech or hearing impaired. Accessible registration and renewal of emergency services is important for inclusive disaster response. | FEMA Photo Library/George Armstrong

Even though people with disabilities are often a “forgotten minority” in many aspects of climate change resilience, we have received recognition when it comes to disaster readiness and response. In the United States especially, there are federal, state, and local agencies tasked with ensuring the civil rights of people with disabilities during disasters, although there have been major failures on behalf of those agencies during disasters. Within the disability community, nonprofits and advocacy groups at the national, state and local levels are seeking to remedy these shortcomings and protect our well-being. For example, in May 2018, the Partnership for Inclusive Disaster Strategies, a major national coalition, released “Getting it Wrong,” an in-depth report covering the shortcomings in meeting people with disabilities’ needs during the many natural disasters of 2017-18.  Some of these shortcomings included lack of access to power for people with medical equipment in Puerto Rico, inaccessible registration and renewal processes for FEMA assistance after Gulf hurricanes, and insufficient emergency warnings for deaf individuals ahead of forest fires in California. Clearly, there need to be improvements system-wide and more must be done in the future.

Addressing Disability in Natural Disasters: Best Practices

Guaranteeing the well-being of people with disabilities in natural disasters is a matter of human rights. As the Partnership points out in Getting it Wrong, people with disabilities are protected by many federal civil rights statutes before, during and after disasters – including the Americans with Disabilities Act, Section 504 of the Rehabilitation Act, the Fair Housing Act, the Olmstead decision guaranteeing a right to community-based living, educational equality regulations, and more. International agreements such as the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) also call for ensuring safety in disasters. Protecting well-being will take coordination between government, nonprofits, and community groups; securing funding and resources; and providing people with disabilities with the information and supplies needed for personal resilience. Among other actions, some important recommendations include:

  • Provide accessible informational documents, warnings, and ongoing public communications for people with a range of communication and cognitive disabilities. Also, provide accessible resources for acquiring and managing assistance from disaster relief agencies such as FEMA.
  • Guarantee accessible evacuation, transportation and shelter before, during and after disasters. Ensure that this is provided for as long as needed for individuals to recover their independence; also, guarantee access to housing in the community as supposed to in hospitals or nursing homes (in compliance with Olmstead requirements).
  • Identify individuals with specific disability-related medical needs, such as electric power for medical equipment or oxygen supplies for ventilators, and provide those through reliable and well-organized venues.
  • Government agencies should always meet civil rights requirements for people with disabilities. The government cannot shirk its responsibilities by “outsourcing” or deferring response efforts to nonprofits or for-profit companies, although sharing responsibilities may work if the government guarantees that its partners are meeting civil rights requirements.
  • Always include people with disabilities in planning and response efforts in line with the frequently-used disability rights mantra, “nothing about us, without us.”
  • Give people with disabilities the necessary information, education, and resources to increase their personal resilience to natural disasters. This can include, for example: plans to communicate and coordinate with support networks; establishing “buddy systems” with neighbors and even coworkers for fast evacuation; having sufficient food, water, medication and medical supplies to safely manage disasters and recovery; and identifying evacuation methods and medical resources or shelters that can accommodate one’s disability.

There are connections between poverty rates and increased difficulty managing or surviving natural disasters. Improving economic situations of people with disabilities can increase their personal resilience and disaster-related outcomes.

A large ship in a body of water. The ship is white with red crosses, signifying it has medical services.
Hospital ships and medical services can be sent to disaster areas in times of need. The USNS Comfort, pictured here, is nearly 900 feet long and can hold up to 1000 patients at a time. It has been used in combat situations as well as disasters such as after Hurricane Katrina and the 2009 Haiti earthquake. The Comfort was deployed to Puerto Rico after Hurricane Maria but was not used to the full extent possible. | United States Navy/Photographer’s Mate 2nd Class Timothy Comerford

There are many ways to respond to natural disasters and protect the well-being of marginalized groups more broadly, which can then be used to address the needs of people with disabilities. The Sendai Framework for Disaster Risk Reduction 2015-2030 – a major international agreement for establishing disaster resilience for populations, economies and the environment – aims for “[t]he substantial reduction of disaster risk and losses in lives, livelihoods and health and in the economic, physical, social, cultural and environmental assets of persons, businesses, communities and countries.” The United Nations Office for Disaster Risk Reduction (UNISDR) has laid out a strategy for the consideration of marginalized groups (including people with disabilities) when developing national risk assessments, which contains 5 key components of an inclusive national risk assessment development process. These are: recognition and engagement; data; implementation; communications; and monitoring and evaluation. For more information and insights on UNISDR’s recommendations, check out the link above.

Natural disasters represent a powerful example of the current and future impacts of climate change. The frequency and intensity of disasters will continue to increase as the years go on. Certain populations are more vulnerable to the direct impacts of disasters and face more difficulty afterward with regards to attaining services and reestablishing their well-being. People with disabilities are a key group and face many barriers including maintaining personal support networks, medical supplies, social services, and accessible resources (information, transportation, housing, and more). It is important to create comprehensive disaster readiness and response planning that both empowers individuals and guarantees necessary supports by government and its partners. This planning must address the needs of people with disabilities by assessing their situation, collecting data, and always including input from the disability community and key representatives. This comprehensive, inclusive and proactive disaster planning can protect lives and well-being in times of crisis.

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