in Independent Living


by Linda Allen

Communicating with a doctor is a critical part of maintaining health and dealing with illness. The importance of good communication is demonstrated by the number of articles that regularly appear in both health related newsletters including-- the Harvard Women's Health Watch-- and more general publications, such as Consumer Reports, the Ladies Home Journal, McCall's and Redbook. The articles describe the errors that can often result when the doctor and patient do not understand each other and provide an array of suggestions to increase communication. For patients who are deaf, the communication problems are significantly compounded, sometimes compromising the quality of medical care.

In the pre-Americans with Disabilities Act period, effective communication between a doctor and a deaf patient was more likely to occur by chance than by design. Lacking any legal prerogative, deaf patients had little choice but to either have another individual, often a family member, accompany them or to write notes back and forth. The reliance on a third party sacrificed the deaf patient's right to confidentiality and placed the so-called "interpreter" in a position to decide what the patient should or could know. Note writing was a laborious and time-consuming activity that often reduced complicated diagnoses and treatment instructions to a brief summary. In some instances, a staff member with often limited knowledge in American Sign Language (ASL) would be called upon to finger spell the "important" areas of the conversation. None of these approaches ensured a clear and precise exchange of information. Both doctor and patient could only hope they were understood.

While the potential liability was very high, the risk did not serve to improve the situation as sometimes happens. Indeed, the issue was seemingly ignored, providing yet another indication of the low value placed on the needs of deaf patients and the lack of power they possessed.

At best, the situation for the deaf patient was frustrating and demeaning; worst case scenarios could be life threatening. Relegated to a back seat, so to speak, deaf patients were denied the power to control their own healthcare and treated in a paternalistic manner with little or no recourse available. Deaf patients could either choose to receive medical care on the physician's terms or not at all. Small wonder that many deaf individuals put off going to the doctor until they had to. And then they rarely complained for fear the doctor would not see them.

This was the situation when the ADA was passed in 1990. Communication barriers are covered under Title III.: "Public Accommodations are required to provide auxiliary aids and services when they are necessary to ensure effective communications with individuals with hearing impairments." Qualified interpreters are included in the listing of auxiliary aids. The Department of Justice regulations list health as an area that would require an interpreter for effective communication due to the length and complexity of the situation. Due to the various methods by which deaf individuals communicate, the patient should be consulted to determine the most effective means of communication. When an interpreter is required, the public accommodation must secure the services of a qualified interpreter unless the result would be an undue burden.

While the ADA put the weight of the Federal government behind the needs of deaf individuals, implementation has been both difficult and confusing. Indeed, the proper and regular use of interpreters is one of the most contentious ADA issues and a continuing point of friction between physicians and patients. Unlike building a ramp, which only has to be done once, using an interpreter is an ongoing activity and expense. The cost of an interpreter is likely to be more than the reimbursement the doctor receives for the medical service provided and adds to the billing paperwork overload. As few physicians have ever worked with an interpreter, the situation is foreign and uncomfortable. The presence of an interpreter is viewed by some doctors as a fundamental interference in the doctor-patient relationship and therefore inappropriate. The obvious inconsistency of objecting to a professional while readily utilizing a family member to interpret is often lost on the physician. The Resource Center for Independent Living (RCIL) has long been involved in
advocating for the medical needs of the deaf. Those efforts were intensified with the passage of the ADA. In addition to increasing the accessibility and improving the quality of health care for deaf individuals, increased utilization of interpreters also presented a business opportunity, as it would increase RCIL's fee-for-service revenue.

There is a large deaf community in Oneida County and the surrounding counties that make up RCIL's catchment area. This is due, in part, to the location of the New York State School for the Deaf--a residential school serving children ages 2-21--in Rome, New York, just twenty miles away. Over the years, many of the school's students have remained in this area following graduation, or they return here after college. Other deaf individuals are drawn by this deaf community with the result that the use of interpreters is a major local issue. Due to these demographics, one of RCIL's first initiatives was providing and coordinating interpreting services for the local community.

RCIL has taken a multi-pronged approach to the problem, including individual and systemic advocacy activities, outreach to the deaf community and direct service provision through the Deaf Services and Interpreter Services department. RCIL provides interpreters 24 hours a day under contract with six local hospitals. We have developed a pool of local professionals who are skilled in interpreting in many settings, including medical environments. Regular skill building workshops utilizing our video and print resources are provided for area interpreters. Advocacy efforts have included educational workshops for physicians presented in cooperation with the Medical Societies of Oneida, Herkimer, Madison, Chenango and Oswego Counties and self-advocacy training for the deaf community.

RCIL has been involved in several difficult situations locally and has long sought a method to resolve the problem in a way that would address the concerns of both the medical and deaf communities. During a series of discussions with the Director of the Medical Societies of Oneida, Herkimer, Madison, Chenango and Oswego Counties, a membership concept was suggested. The idea was to develop a program similar to both the Automobile Club of America and a capitated rate generally negotiated with Health Maintenance Organizations (HMO). The Interpreter Membership Insurance program which resulted is offered through the Medical Society and is only available to society members. As such, it also serves as a recruiting tool to increase their membership.

For an annual fee of $95, a physician enrolled in the plan can call RCIL and receive an interpreter for up to 12 office visits per year. Rates are for individual doctors. When at least five doctors in a single group practice join, the annual charge is $90 each. Interpreters are available with a 48-hour notice. Members also receive a 25% discount on RCIL's Barrier Removal Consultation Service and a quarterly newsletter with ADA related information and updates. Rates were established based upon the number of hours of service provided in the prior three years and on anticipated utilization.

The program helps the doctors save money. The $95 annual fee is a savings of $805 over the per office visit charge if all 12 visits are utilized. It also eliminates fee negotiations, the uncertainty of unexpected expense and the need for multiple billing, another cost savings. Time may also be saved during office visits as the laborious writing of information and passing it back and forth, a common communication practice, is eliminated. Additional timesaving may result from removal of the wrangling over interpreters that frequently takes place. The program was launched in July 1998 with an article in the Societies' newsletter,
followed by a personal letter to all physicians in the five county area, both society members and non-members. A second letter was sent in January 1999. At the present time, 38 doctors have joined, most of whom have never previously utilized an interpreter. The success of the program has been gratifying to everyone. The program provides substantial benefits to patients, physicians, and the deaf community as a whole, and for RCIL.

Of primary importance is the increase in accessible healthcare available to the deaf community as the use of interpreters is integrated into the healthcare system. This eliminates the tension that often exists and makes the relationship between deaf patients and their physicians more comfortable for everyone. Physicians and patients receive quality service that ensures clear communication and compliance with the law. Patients gain a better understanding of their own medical condition, and doctors are assured that their instructions are understood. As a result, deaf individuals are more willing to seek healthcare, and the doctors are more willing to see deaf patients. As communication improves, the relationship between doctor and patient is enhanced, with each gaining greater respect for the other. Using an interpreter maintains the confidentiality of the doctor-patient relationship, which is compromised when a friend or family member interprets. This protects the privacy of the deaf patient and puts them in control of their personal medical information, a given with hearing patients. This outcome fulfills not only the letter but also the spirit of the ADA, which seeks to enable a person with a disability to have the same opportunity as a non-disabled person to obtain goods, services or privileges.

The Interpreter Membership Insurance program minimizes the liability risk which previously had not been seriously considered, as illustrated by RCIL's experience. Shortly after the passage of ADA, a physician called inquiring whether he had to provide an interpreter. When questioned, it turned out that he was discussing a potential surgical procedure. In addition to explaining the requirements of the then recently passed law, staff discussed the liability issue related to "informed consent," the need for both parties to fully understand the other, potential problems, risks and areas to be concerned about. The surgeon expressed little concern about the potential liability. However, under ADA this situation has been changing and liability is increasingly recognized for the grave risk it can present to the medical community. Some of the thorniest ADA lawsuits involve the communication rights of deaf individuals. The publicity given to the filing of a lawsuit against the SUNY Health Sciences Center in nearby Syracuse on behalf of a deaf patient may have alerted local physicians to the risk of not using an interpreter and made them more amenable to our proposal.

The program has also provided greater exposure for RCIL. As more people learn about the Center, more consumers are reached and additional programs or service opportunities arise, creating more business. The expansion of the concept to other markets, such as lawyers, dentists, physical therapists, is under consideration. Other suggested markets include museums, theaters and facilities that provide lectures and similar public programs. Our long-term goal is to so integrate the use of interpreters into the community that their presence is routine.

The Interpreter Membership Program has proven to be a simple and effective method to address the concerns of both patients and physicians. As a benefit available only to the membership of the Medical Societies, the program receives the Societies' full support. Based upon our experience, we believe similar programs could be replicated nationally. This would increase access for deaf individuals and help to resolve a difficult ADA issue.

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