- Fact Sheets
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
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
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
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
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.
Access for Disabled Women: Tell Your Doctor about Your Access Needs is a 6-minute animated video that explains how to work with your health providers to improve the quality of your care. The video discusses important issues like stereotypes, accessible equipment, communication, getting support from friends, and more. It is available with and without audio descriptions. Watch Access for Disabled Women.
MAP to Access includes a series of fact sheets that can help give you ideas about specific areas where you need your access to medical care improved. Some might seem obvious to you, but that doesn’t mean they are obvious to your health care provider.
The fact sheets present the following issues:
- Culturally Competent Care for Disabled People with Diverse Ethnicities
- The Benefits of Adjustable Exam Tables
- Health Care Access for Blind and Visually Impaired People
- Health Care Access for Hard-of-Hearing People
- Health Care Access for Culturally Deaf People
- Reproductive Health Care for Women with Physical Disabilities
- Reproductive Health Care for Women with Developmental Disabilities
Once you’ve decided which fact sheets are most relevant to your situation, print them out and take them to your health care providers, so that they can learn how to serve you best. Click here to see the Fact Sheets.
The Assertiveness Video and Fact Sheets are enough to get you started. However, if your goal is to train other people or groups to advocate for access to medical care, you should look at MAP to Access’s Trainers Section. It provides many tools that can help you learn how to effectively facilitate peer counseling or support groups or training events, for example. The MAP to Access Trainer section also includes a couple of detailed articles that talk about issues specific to women and an entire workshop designed to train people about the ADA. Click here to see the Trainers Section.
MAP to Access was inspired by a series of focus groups in 2005 that included medical providers and people with disabilities discussing their thoughts about medical care for people with disabilities and their reactions to WID’s video training program, Access to Medical Care: Adults with Physical Disabilities. Comments by focus group participants are presented throughout MAP.
by Marsha Saxton
I have podiatry treatment about every two months, sitting on an exam table with my feet stretched out while the doctor works on my feet. At one session, he accidentally cut the bottom of my foot.
I walk with an uneven gait due to spina bifida and have poor circulation and reduced sensation in my legs and feet. I wear short leg braces to improve my walk. Sometimes the braces cause calluses that could result in blisters and infection. I must have the calluses trimmed to prevent complications.
With no sensation in the bottom of my feet, I didn’t feel the incision. I saw him pick up gauze and dab at blood.
“What happened?!” I asked.
“I missed,” he said.