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Posts Tagged ‘medical accessibility’


Touch Points

By Renée Walker

How many of us have had problems getting what we need due to communication issues? Despite laws that are in place to help equalize education, entertainment, legal, and medical worlds, how many of us still have trouble accessing the world around us? In this rural area that I live, I have encountered enough problems to last me two lifetimes. Growing up hard of hearing as a child to deaf as a teen and young adult, I thought I knew plenty about the problems caused by the inability to fully communicate. When my vision problems became an issue that couldn’t be ignored or overlooked, I just didn’t realize what I was about to face. Coping with the loss of vision and eventually independence was hard enough. I just didn’t know that I would have a struggle just to see a doctor and be able to understand and act on my own behalf.

I think my first clue was that people didn’t know what a guide dog was at all. Stores, banks, schools, churches, and malls all refused to let me enter with my guide dog. It was a repeated effort of education with the help of my guide dog school, Southeastern Guide Dogs, Inc. that finally seemed to ease the travel issues over the first couple of years. As I learned to be more independent through travel and then after gaining more control from study at Helen Keller National Center, I found that I needed to face some serious health issues. I had been seeing doctors before for my chronic issues, but now things had changed. Needing a tactual interpreter to communicate my health problems with a physician became an absolute necessity. None of my preparation learning about communication cards, interpreting services, getting used to discussing private issues through a stranger helped me to cope with the shock that the medical agencies here didn’t seem to know anything about interpreters much less the American Disabilities Act. I tried to educate each doctor with a copy of the law and a list of interpreting agencies for the area which weren’t many and only a couple of interpreters from those agencies comfortable enough to agree to tactual interpreting. Every doctor’s office I had and new ones that I tried to go to for new or worsening symptoms or to replace doctors were now refusing to provide me with an interpreter. My procedure was to call and ask for an appointment. I didn’t have a problem getting an appointment, but after arranging a day and time, I would then state that I needed a tactual interpreter. Many times I had to explain what an interpreter did and then what a tactual interpreter did. I would explain how they went about finding one and requesting the service. I told them how they were responsible for the fees, but ADA law allowed them to take it off under operating expenses or overhead. I always offered to mail or fax the information to them and mentioned telephone numbers of agencies that they could call and ask questions. I also referred them to the website for the National Association for the Deaf (NAD). I would then say you can call me back, or I will call you back when you have had time to research your responsibilities under the law. I can’t remember a single one calling me back first. I would call them and ask again. This would usually go on for weeks before they would finally say, “We won’t provide an interpreter for you.” My initial contacts with NAD a year and a half ago resulted in nothing. They wouldn’t return my emails even though I knew the email address was correct. A few months ago, I tried again. I was pleased when someone did respond and was very helpful. They made phone calls to all the doctors’ office in question and were amazed how adamant most were in not caring if they were in violation of law. NAD sent letters from their attorney informing them of their responsibilities. One doctor’s office relented and now provides me an interpreter. The others still refused to do so. NAD felt the situation was bigger than they could handle and put me in touch with a group of attorneys at an advocacy center that is now in helping me with my problems. NAD continues to follow the situation. My current attorney has repeated the initial steps of phone calls and letters to try and solve the situation with the least amount of litigation as possible. The doctors’ offices in question have still refused to provide an interpreter for my appointments. The center is still acting on my behalf. I am still working to better educate the medical agencies in my area on the needs of deaf and deafblind patients regarding communication issues and their rights to be informed and make decisions. The fight goes on as my medical issues continue to deteriorate.

You might now ask if I contacted local and/or state agencies and private organizations for the deaf on this issue. I contacted them before I contacted NAD the first time. Most of my attempts to call were not returned. At one agency, I was told that in this area the deaf usually choose to use family members and friends who could sign or otherwise help them to communicate. The doctors’ offices in the area have come to expect this. This organization and others who mentioned similar reasoning felt that it was their responsibility to support what the Deaf community desired. I think back to when I could still see, and I went to the doctors without help. It wasn’t always easy because I had to keep asking the staff to look at me or repeat, but I didn’t know ASL. I had heard of ADA, but only knew about wheelchair ramps, braille signs, and hearing aid compatible phones. That was because I saw them around me in the environment and knew it was because of the ADA law. No one ever offered to explain that it meant more than that including the deaf services area of Vocational Rehabilitation Services that helped me get into college or later go to Helen Keller. Would I have requested accommodations if I had been informed? I don’t know, but it would have been nice to have had the choice to consider.

A final aspect to this situation that I would like to pose is the argument that the Deaf and some DeafBlind would rather use family members and friends. Of course, that is their choice, and I would not want to force anyone to do anything that would make one feel uncomfortable. Again, though, I would want to make sure that choice is an informed one. It has been shown that untrained family members or friends often do not understand the medical terminology and processes well enough to accurately translate to ASL or convey it most any other way. They often are too close to the patient and wish to shield them from pain and fear if the news is negative. Others may see the patient as more of a child and try to make the decisions for the patient. Or, often it is simply a matter of feeling overwhelmed with the information being given and trying to convey it to the patient that friend or family member resorts to, “I will tell you everything later”. If the patient is fully aware of these issues and is ok with that then fine, but education should be in place to make them aware of the possibilities and help the family members and friends be aware, too. Most of this would not be a conscious attempt to deceive just blinded my love and concern. In addition, the other side to this coin is the doctors’ offices are at risk as well. There have been cases of a patient making appointments and not requesting accommodations for communications such as for an interpreter and then suing the doctor’s office for not providing one. The patients win the case because the ADA law is clear. Having a policy of asking a deaf or deafblind patient if there are any communications issues and any modifications that they need and providing them upon that request could help protect them from such possible litigation. I have heard and read many opinions on all sides of this issue regarding providing interpreters in medical settings. The ADA law exists to protect deaf rights, and it was written to prevent overdue hardship on medical providers. Everyone needs to educate themselves and others. Litigation should not be needed for deaf and deafblind to receive proper medical care and understand that care given. The patient should not also have to fear that the medical provider might retaliate in poor care once forced to provide the accommodations for communication.

Advocacy is the key here with education and awareness being the preferred method. The law is there for us to use if needed. No one should have to have their medical issues ignored or medical decisions forced on them. We all need to work together on this and other issues that face us. Since there have been others asking about similar issues, I wanted to share my experiences in hopes of helping others.

If you have questions or comments, you may email me at rkwalker@wynfieldca.org or write me in braille at 143 Williamson Dr., Macon, GA 31210.

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