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Training & Peer Support

Peer Support Health Access Training Program for Disabled Women

This is a peer counseling training model for disabled women, conducted at a disability organization in 2004, that is appropriate for Centers for Independent Living, disability support organizations, Senior Centers, and other community-based disability rights or elder services organizations. This program provided training in peer counseling skills, health and health access awareness, and a personal growth experience, emphasizing empowerment and self-advocacy skills. The specific skills that were taught and practiced in this group are described in the Support Group Training Guide.

Peer Counseling (PDF)

A Training Curriculum on Improving Access and Quality of Care for Women with Disabilities

This curriculum offers teachers and leaders in the disability community an array of training resources about issues of medical self-advocacy. These resources can be used in classrooms, workshops and staff meetings as well as one-on-one tutoring in self-advocacy.

Training Curriculum (PDF)

Facilitating Support Groups

Support groups are among the best and most popular approaches to empowering and connecting people. In support groups, participants can open up, realize they are not alone, heal old hurts, set new goals, learn new skills, take charge of their lives, and become leaders themselves. For many people, a support group is the best arena for these kinds of changes.

Leading a support group can be a rewarding and growth-enhancing activity. However, it can also be very challenging. This article discusses ideas and approaches to facilitating an effective support group. It addresses the planning process before the group begins, an overview of leadership skills and activities, ways to include people with communication impairments, difficulties and challenges that may arise, and evaluation of the group.

Support groups have changed millions of people’s lives for the better. This structured group interaction is particularly useful for people with disabilities to learn to direct their own health care, become more communicative with providers, understand and assert their rights and become active partners in their own healthcare.

Facilitating Support Groups (PDF)

Empowerment Training Sessions and Events

The suggestions in this article offer ideas and explanations for developing and structuring empowerment training sessions and events. Keep in mind that training needs of populations of disabled people or families will vary, so feel free to make adaptations. We also encourage reading Facilitating Support Groups because training events and support groups can be similar with respect to group dynamics.

Empowerment Training Sessions and Events (PDF)

Disability Awareness Workshop

The purpose of this workshop is to introduce and explore important information about people with disabilities. We will demystify the concept “disability” and offer basic skills for interacting with and accommodating people with disabilities.

The following are the goals of the workshop:

  • Increase participant awareness of disability issues and disability culture.
  • Offer a basic understanding of the barriers preventing people with disabilities from full participation in society.
  • Encourage participants with disabilities to share their knowledge and help educate others.

Section 1 contains activities that introduce participants to basic disability concepts and issues, such as the civil rights of people with disabilities. Section 2 introduces participants to the concepts of access and accommodation and encourages participants to become more aware of their environment with regard to access. Section 3 helps participants recognize stereotyping and familiarizes them with appropriate language, etiquette, and disability culture when communicating and interacting with people with disabilities.

Workshop activities are interactive, hands-on, and enjoyable. Each activity provides many examples of the terms and concepts covered and demonstrates the importance of understanding the information presented. Sections 1 and 2 each contain two activities, and the facilitator may choose one activity or the other to impart the information. Sections 1 and 3 are supplemented with handouts that summarize and reinforce the terms and concepts presented in this workshop.

Trainers can easily facilitate this workshop with people with a range of disabilities. If you or your program does not include people with disabilities, you might consider enlisting a staff person or trainer from a local Independent Living Center, Disabled Students Program, or other disability organization to conduct this workshop. Although these materials and activities are designed so that anyone with some basic knowledge of disability and disability issues can facilitate, the material will be most effectively presented by trainers with disabilities. In order to more effectively present these activities, trainers should also see the Empowerment Training and Support Group Facilitation articles to learn more about approaches to working with groups and difficult situations that can come up during training sessions.

Disability Awareness Workshop (PDF)

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Articles

The Last Sisters: Heath Issues of Women with Disabilities

by Carol J. Gill

Women with disabilities may sometimes have complex needs, but failure to acknowledge their commonalities and similarities with other women marginalizes and isolates women who are struggling to see themselves and wish others to see them as women, not as genderless beings. Carol Gill raises critical questions about how to meet the health needs of women whose place in the diversity of womankind has often been neglected.

This article was originally published by Carol Gill in:

Gill, C.J. (1997) “The last sisters: Disabled women’s health” In S.B. Ruzek, V. Olesen, & A. Clarke (Eds.) Women’s Health: Complexities and Differences. Columbus, OH: Ohio State University Press.

It is reprinted here in PDF form with the author’s consent.
The Last Sisters- Heath Issues of Women with Disabilities (PDF)

Strong Proud Sisters: Girls and Young Women with Disabilities

by Harilyn Rousso

Girls and young women with disabilities encounter substantial barriers to receiving quality medical care. Rousso explores this range of factors, including architectural barriers in health care facilities and policy barriers in public insurance programs, and how they impact health care access of disabled girls and women from birth to age 17. Underlying these barriers are discriminatory attitudes about disabled people as they intersect with attitudes about females. Negative attitudes inform personal interactions and essential communication between patient and health care provider. More broadly, our society does not seem to recognize that the needs of disabled girls and young women deserve attention and resources.

This article was originally published by Harilyn Rousso in:

Rousso, Harilyn, 2001. Strong Proud Sisters: Girls and Young Women with Disabilities. Center for Women Policy Studies. Washington, DC 202-872-1770 www.centerwomenpolicy.org

It is reprinted here in PDF form with the author’s consent.
Strong Proud Sisters- Girls and Young Women with Disabilities (PDF)

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Access for Disabled Women Video & Fact Sheets

Access for Disabled Women Video

Watch the video either with audio descriptions (second video on page) or without them (first video on page):

Watch the video with audio descriptions:

Select this PDF file to read a Transcript for the Access Video.

Fact Sheets

MAP to Access fact sheets give you basic information about disability access to health care. They explain how medical settings, like doctor’s offices, hospitals, laboratories, and waiting rooms, as well as phone interactions with medical staff, can be made more accessible for you and other people with disabilities.

Download and print out the fact sheets to learn more. Then give copies to your health care providers, so that they can read them, too!

Medical doctors want to do a good job and will listen to your advice and learn from this information. Medical providers will appreciate you providing this information, because they know that you are the person who best understands your health care needs.

Follow these steps:

  1. Read the fact sheets. They are easy to understand and will help you learn about your rights and what you can ask your medical provider to do. If you want to learn more, each fact sheet provides links to free resources with more detailed information.
  2. Decide which fact sheets best fit your situation. Some fact sheets focus on specific disabilities, such as vision or hearing loss or mobility impairments, while others deal with more general health care needs. You may find that only one fact sheet is important for you, or you may find that two or three of the fact sheets are relevant.
  3. Print out the fact sheets that will help educate your medical provider and give them to him or her! For more information about how to teach your provider about what you need, MAP includes a video (above), Access for Disabled Women: Tell Your Doctor about Your Access Needs.
  4. You can add information to the fact sheets. Each fact sheet leaves space at the bottom of the page for you to add your own advice or personal information. There is also plenty of additional space on the back.

The following seven fact sheets are in PDF format for easy readability and printing:

  1. Health Care Access for Blind and Visually Impaired People (PDF)
  2. Adjustable Exam Tables (PDF)
  3. Reproductive Health Care for Women with Developmental Disabilities (PDF)
  4. Reproductive Health Care for Women with Physical Disabilities (PDF)
  5. Working with Hard-of-Hearing People (PDF)
  6. Working with Deaf Individuals (PDF)
  7. Culturally Competent Care for Diverse Disabled People (PDF)

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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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Preface to MAP

Myths and Stereotypes

Myths and stereotypes about disability still confuse health care providers and disabled patients.  Many providers remain unaware that they have responsibilities under the Americans with Disabilities Act (ADA), and that they, in order to comply with the law, need to know how to make their services accessible to individuals with disabilities and treat this population in a culturally competent manner. Unfortunately, these issues are rarely addressed in medical school. Similarly, many individuals with disabilities remain unaware of the ADA and their right to have the same access to quality medical care and resources as individuals without disabilities.

Furthermore, disability discrimination leads individuals with disabilities who seek health care to expect little, cover or hide their real needs, and submit to inadequate treatment.  Also, health care providers are not immune to myths and stereotypes about disability and by verbally or non-verbally expressing them, they contribute to disabled women internalizing these negative assumptions.

Yet with the appropriate tools and resources, women with disabilities can educate themselves and their health care providers to challenge the myths and stereotypes about disability and move toward creating an effective partnership that improves the quality of medical care that disabled women receive.  MAP to Access offers these tools and resources.

Six Myths about Disability

Myth 1

Providers think: “Disabled women’s particular needs make them a whole other category of ‘special patient,’ which overrides and even negates their general and gender-related needs.”

Disabled consumers think: “I’m not quite a real female.”

The facts: Disabled women have the same general health care and reproductive health care needs as other women.

Myth 2

Providers think: “The main concern for disabled women is that they have ‘complex medical needs.’”

Disabled consumers think: “My access problems are too much trouble to even begin to describe to a provider.”

The facts: The social, logistical and access issues of disability must be addressed to provide quality medical care for disabled women.

Myth 3

Providers think: “Disabled people, especially disabled women, are incompetent and helpless and need patronizing care plans.”

Disabled consumers think: “I must fight a losing battle for a voice about my own care.”  This may make some disabled women look as if they think, “What do I know? I’m just the patient.”

The facts: Disabled women are often knowledgeable about their own needs. They can and must be consulted and included in their care and treatment.

Myth 4

Providers think: “Somebody else in this facility deals with the requirements of the ADA.”

Disabled consumers think:  “Some administrator I will never meet is in control of my access needs.”

Or, “This provider will never understand my access needs.”

The facts: The Americans with Disabilities Act impacts on the individual doctor-patient relationship, not just on the facilities.

Myth 5

Providers think: “Access accommodations are byzantine, unnecessary, or expensive fuss.”

Disabled consumers think: “I don’t want to ask for too much or be a bother. If I do, I will be disappointed or worse, I will be labeled a trouble-maker.”

The facts: Disability access and accommodation enhances and enables quality medical care (regarding communication, examination, diagnostic test access, and treatment plan) and saves health care dollars in the long run.

Myth 6

Providers think: “Just ignore the impairment,” or, conversely, “It’s always about the impairment.”

Disabled consumers think: “I don’t want too much attention put on my disability, since that’s always what happens in public.” Or, “My disability is who I am and must always be the problem.”

The facts: Appropriate, strategic attention to the real impact of a disabled person’s impairment on other aspects of their health enables quality medical care. Providers and patients must think together to clarify this.

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MAP

Medical Advocacy Project (MAP) for Health Access offers research, education, training, technical assistance, and technical resources. This comprehensive training curriculum includes high-motivation learning tools and downloadable PDFs that help women with disabilities learn about their right to accessible, quality health care as required by federal law. They can get training in self-advocacy skills to enable them to become educators and resource people to their own health providers and local health care organizations about these rights and the resources required to enable them.

This program addresses the substantial health disparities for women with disabilities which results from medical providers’ lack of knowledge about their responsibility to comply with the Americans with Disabilities Act (via ADA required access and accommodation for people with disabilities in out-patient clinics.) MAP empowers disabled women and improves care for their unique health care needs.

Select a section from the list below to learn more.

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Access to Medical Care DVD Set & Training Curriculum

“Access to Medical Care” is a DVD set and training curriculum for physicians, dentists, nurses, and other medical staff about key issues that influence the quality of care in outpatient clinical settings. It empowers providers, patients, and families to achieve accessible, appropriate care in compliance with U.S. disability law.

“Full of practical, meaty information, this program demystifies disability, emphasizes that ‘disability’ is not ‘illness.’ The central theme is that the outward manifestations of disability do not mean that there is a diminution of human capacity…Powerful and instructive. ” – Dr. Robert Master, Commonwealth Care Alliance, Boston.

“Access to Medical Care: People with Developmental Disabilities” is a 25-minute DVD that includes closed captions and audio descriptions. Watch a preview:

“Access to Medical Care: Adults with Physical Disabilities,” selected for Brandeis University’s Irving Zola Memorial Lecture Award in 2008, is a 22-minute DVD that includes closed captions. Watch a preview:

Through compelling interviews with individuals, physicians, nurses, dentists, parents, and advocates, the two DVDs introduce and clarify key concepts in treating people with physical and developmental disabilities. Appropriate for students and professionals, they:

  • Explore the views and experiences of people with disabilities and providers in establishing rapport and effective communication,
  • Address cultural competence, access, and communication issues that often arise in the clinic,
  • Identify common myths and stereotypes that interfere with accurate assessment of patients,
  • Explain barriers that result in disparities in health care delivery, including physical/architectural, communication, attitudinal, and social/economic policy,
  • Identify the most common access and accommodation needs of adults with physical, sensory and communication disabilities, as required by the Americans with Disabilities Act and explain feasible, cost-effective solutions,
  • Clarify essential principles of quality care in treating people with disabilities,
  • Reinforce key learning points in bulleted graphics (available in printed handouts in the curriculum).

When purchased, the DVD set comes with “Access to Medical Care: Training Tools for Health Care Providers, Disabled Patients, and Advocates on Culturally Competent Care and Compliance with Disability Law.” This accompanying text offers a case-based learning exercise and extensive in-depth reference materials. It provides essential knowledge for appropriate provision of care and compliance with the Americans with Disabilities Act. The curriculum emphasizes access and communication as the fundamental components in addressing health care disparities for people with disabilities. It is included free with any purchase of either of the DVDs or can be downloaded here: Complete PDF: Access to Medical Care Curriculum.

Go to the publications page to learn more about purchasing details.

Note: The curriculum was developed by the World Institute on Disability, in collaboration with Nisonger Center, Ohio State University; Center for Health Care Strategies; Kaiser Foundation Multi-Media; California HealthCare Foundation.

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