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NED Introduction

Welcome to New Earth Disability, which is the first major initiative aimed at addressing the intersection of climate change and disability worldwide. We are happy that you have discovered this extremely important topic and we strive to give you more resources to learn and make change in your community. Read on for more.

Why Climate Change and Disability?

Climate change is one of the most significant issues facing the world today, with consequences for the environment, economies, natural resources, public health and countless other parts of society. Many of these consequences endanger lives and well-being world-wide. The climate is changing largely because humans have been burning fossil fuels for the past 150 years – for example, using coal in electrical power plants or gasoline in cars and trucks – which releases carbon dioxide and other “greenhouse gases” (GHGs) into the atmosphere. These GHGs trap the sun’s heat, so when there are more in the atmosphere, it warms the Earth’s atmosphere itself (as well as the oceans, which also absorb heat). Atmospheric CO2 levels have increased from around 280 parts per million (ppm) in the 1870s to over 400 ppm today; as a result, average global temperatures have jumped around 1°C (1.8°F) in that timeframe, and scientists predict a change of 2°C or more in the coming decades. Warmer global temperatures lead to other changes including stronger and more frequent storms, hotter heat waves, deeper droughts, rising sea levels and more. These affect individuals and societies, for example through storms causing injuries or coastal flooding forcing people to find new homes. Although we can reduce our carbon emissions through renewable energy and other efforts, the Earth will continue to warm to some extent – and may warm drastically in the coming decades. That means that we must prepare for climate change and build our resilience moving forward.

A satellite view of Hurricane Irma, a large circular storm passing over Puerto Rico in 2018.
Hurricane Irma, a category 5 storm, was one of several highly destructive hurricanes in 2017 in the Atlantic and Gulf Coast region. Climate change is projected to lead to more frequent and stronger storms in the future. | NASA

People with disabilities (PWDs) are uniquely impacted by the effects of climate change. Disability covers a diverse array of impairments and populations, and climate change leads to a very broad set of consequences – so concerns for the disability community are incredibly complex. For example, somebody with a physical disability may have difficulty finding accessible evacuation shelters during storms, while a person with chronic health conditions may experience exhaustion or even heat-stroke during heat waves. As we adapt to climate change, we must focus on disability-inclusive adaptation and climate resilience at every level possible.
Some examples of the connections between climate change and disability include:

  • Natural disasters: Climate change will lead to more frequent and intense natural disasters, such as hurricanes, flood-causing downpours, or wildfires. People with disabilities are especially vulnerable during natural disasters: they have difficulty evacuating hard-hit areas, escaping damaged buildings, finding accessible shelters, and finding medical and personal support care during emergencies. Therefore, there should be comprehensive disaster readiness and response (DRR) that includes the needs of PWDs.
  • Extreme heat: Climate change contributes to hotter and longer heat waves, where a string of extremely hot days and nights can stress people’s health. Many types of disabilities make it harder to manage extreme heat, and because people with disabilities face higher poverty levels on average, they may have lower-quality housing with less access to air-conditioning (AC) will. Individuals also may not have easy access to cooling shelters, depending on their living situation (i.e limited access to transportation, nearby accessible shelters, or personal support needs in cooling areas). This all puts PWDs at greater risk of life-threatening heat exhaustion or heatstroke during extreme heat events. To improve health and safety, governments and other planners should increase the availability of accessible cooling shelters, provide disability supports at those shelters, improve housing insulation and AC (especially for low-income PWDs), and provide electric utility discounts for PWDs who need them.
  • Climate migration: Hundreds of millions to well over 1 billion people may be displaced due to the consequences of climate change in the coming decades. Some reasons for moving include abandoning flooding shorelines or drought-ridden areas, being displaced by a climate-related natural disaster and never moving back, or even escaping from violent conflict sparked by climate-related effects (i.e. wars over limited water resources). However, it may be difficult for PWDs to move: they may not be able to find accessible transportation or housing, they may not be able to keep healthcare/social services, their personal support networks may become scattered, or they may simply be turned away at borders because of their disability. It is important to guarantee accessible transportation and housing, maintain support networks and medical services, and ensure that migration law does not discriminate based on disability.

These climate-related issues and more will take massive efforts to address. Because so many lives are at stake, we must start those efforts now – and for the sake of people with disabilities, in the most comprehensive way possible. That will require everything from research, to rebuilding infrastructure and services, to creating partnerships between organizations and countries, to enforcing international law. But most importantly, it will take resources, focus, energy, and teamwork. And it is important to start now.

A Red Cross shelter set up in a high school gymnasium, with foldable cots with pillows and blankets and staff in the background.]
Inclusive emergency shelters should always have accessible pathways, personal support, medical supplies and well-trained staff. | FEMA/George Armstrong

New Earth Disability at wid.org

The World Institute on Disability’s “New Earth Disability” (NED) initiative began in 2014 as a blog exploring the intersections of climate change and disability. Over the past several years, it has grown to include detailed research, publications, presentations, and direct partnerships toward inclusive climate resilience efforts. We strive to educate the public, including climate change and disability stakeholders, collaborate with allies and advocate for this important and diverse community. We hope you will join us in this effort.

This section of the WID website is broken up into several topics, from an overview of climate change to the effects of specific climate-related issues. We are continually expanding our research and partnerships – so check back regularly. We are always looking for more partners and collaborators as well, so also please feel free to get in touch with Alex Ghenis, the NED project manager, at alex@wid.org.

In addition to this NED introduction page, NED online offers:

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Introduction for Trainers

This section of MAP to Access is designed to help the estimated 25,000 organizations and groups in the U.S. that serve people with disabilities, including centers for independent living, rehabilitation centers, disability rights and services organizations, developmental disabilities centers, networks of group homes, disability support groups, self-advocacy organizations, organizations of parents of disabled children, and disabled student programs. These organizations need to tell individuals with disabilities and their families and friends about MAP and use it to train them to advocate for better health care access.

This section provides detailed information and educational tools in PDF form to help health care consumers review, monitor, and improve their medical care.

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Introduction to Individuals

You and Your Medical Care

Welcome to MAP to Access for people with disabilities! This program is designed to empower you, so that you can be a self-advocate for your needs and your right to get the same quality health care as nondisabled individuals. With the information MAP provides, you can help turn the medical facilities you go to into welcoming, accessible facilities that are staffed by good providers who are responsive to your needs and provide you with high-quality medical care. Specifically, MAP to Access allows you to:

  • learn about the Americans with Disabilities Act (ADA);
  • learn about individual health care access needs;
  • recognize and address structural and programmatic barriers;
  • gain specific relevant skills for effective self-advocacy, such as how to communicate in a non-hostile way and how to be assertive;
  • identify and communicate with the appropriate people in a health care institution about ADA compliance;
  • distribute educational and reference materials to your health care providers;
  • ask medical providers relevant questions;
  • use information and community resources to help with your well-being.

The Americans with Disability Act (ADA)

In 1990, the Americans with Disabilities Act (ADA) established basic rules about access to health care. These rules call for major commitments from health care providers and facilities. These rules also legally require the health care system to respond to the needs of disabled people.  Medical professionals need to

  • understand that disability is about more than physical, sensory, cognitive, or emotional dysfunction;
  • know that other factors, including the environment, architecture, transportation, society, and culture influence and impact the disabled individual’s health and wellness at least as much as her biological impairments do;
  • learn how to provide appropriate, culturally sensitive care, which includes treating disabled individuals with dignity and respect and knowing how a person’s disability may affect her medical care;
  • be aware that providing such care can help avoid unnecessary emergency-room visits, costly case mismanagement, and dangerous secondary conditions down the road.

Equal Access to Health Care and Resources

“I’ve never been to a pediatrician’s office with my kid where I could fit in with my wheelchair. They don’t expect anybody in a wheelchair to have children, which I find not only offensive but inconvenient.  Disabled people do have children.”- Disabled focus group participant

The ADA specifies that if you have a disability, you have the same right to access quality medical care and resources as individuals without disabilities. Equal access means that you should not encounter any barriers that make it impossible for you to get the health care or the resources you need. For example, if you use a wheelchair and have an appointment for a medical checkup, you should be able to enter the doctor’s office, travel to and enter the exam room, and, if necessary, get onto the exam table.  Likewise, your disability should not prevent medical staff from using the medical equipment needed to perform the checkup.

Compliance with the ADA

Although the ADA was enacted more than 20 years ago, many health care providers and facilities still do not comply with the law to give everyone equal access to their services and resources. Consequently, individuals with disabilities continue to face many challenges in their pursuit of quality medical care. Two of the biggest challenges that prevent disabled individuals from getting quality health care are (a) barriers to physical access and (b) barriers to program access.

Barriers to Physical Access

“I hadn’t been to have a Pap test in four or five years because the tables aren’t right. I mentioned it to the doctor one time. But he said maybe you ought to go to another doctor.”- Disabled focus group participant

Barriers to physical access, also known as structural barriers, are caused by the way buildings and their surroundings are designed. Barriers to physical access are things you encounter on your way to a specific location that hinder or prevent you from reaching your destination. They can be outside or inside. Parking areas, passenger drop-off and loading zones, ramps, grates, access lifts, entrances, paths, walkways, sidewalks, or stairs can all turn out to be outside barriers to physical access.  For example, if you use a wheelchair and arrive by car at a hospital for a checkup and discover there is no curb ramp that allows you to safely approach the building, you have encountered an outside barrier. A building’s exits, elevators, stairs, restrooms or inaccessible diagnostic equipment can be inside barriers to physical access. For example, if you have a mobility impairment and your doctor’s office is on the fourth floor of a building that does not have an elevator that is accessible to you, you have encountered an inside barrier.

Many facilities also do not have adjustable exam tables and mammography equipment that enable better access for individuals who have mobility disabilities.

Barriers to Program Access

“I see the breakdown when someone like the quad comes in, and for the first visit there’s a ton of information and perspective that needs to be communicated; but his records are a pile of paper. Trying to convey a lot of information in a very short time to a doctor who’s not very receptive to sitting down for an extra amount of time…to communicate a lot of other things that go along with that package so that the physician can make an intelligent decision.”- Physician focus group participant

Barriers to program access, also known as programmatic barriers,are caused by policies and practices that health care providers use. Barriers to program access limit the ways in which information and services are presented and delivered, preventing you from interacting with and fully benefiting from them.  Printed and oral information and instructions, medical equipment, computer systems and programs, and telephone devices can all be barriers to program access. For example, if you have a hearing loss and the information you need is only presented with a video without captions, you have encountered a barrier to program access.

Educated Consumers and Providers Mean Better Health Care

“My doctors refer to me as ‘Dr. S.’  I design my own braces, and I tell them exactly what to write on the prescriptions.”- Disabled focus group participant

In order to challenge the barriers to health care access, you and your family members, caregivers, or attendant must understand the range of barriers found in the current health care system and know how to effectively address them. You need to know your rights under the ADA and learn how to best advocate for these rights and educate your medical providers, informing them about the concerns and laws that affect people with disabilities. MAP to Access gives you the tools to do so.

How MAP Enables You to Get Better Medical Care

Now that you’ve read this introduction and have a better idea of what access to medical care means, you are ready for the next step: learning to become an effective self-advocate! You might think that it is really difficult to advocate for your needs and your right to get the same quality health care as individuals
without disabilities. But it really isn’t. The key is to know your rights and speak up and tell your medical care providers what you need. The following tools have been designed to help you learn how to talk to your health care providers about access and provide information that you can distribute to them.

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