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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