Confidentiality of Disability Documentation
By Jane Jarrow, Ph.D.
Excerpted from Higher Education and the ADA: Issues and Perspectives, (DAIS, 1997). Used with permission
Confidentiality of disability-related documentation is very important within the disability community. In part, this stems from the fact that one is not considered a person with a disability and entitled to protection under federal law unless s/he chooses to identify as such and to request that protection. This is the only federal civil rights law that acknowledges the right of the individual not to be included within the protected class. Moreover, too often in the past, people with disabilities have been excluded from opportunities because someone else has decided that it is not safe for them to participate, or because someone believes they are not capable of participation, or because someone decides it will be too difficult or too expensive to have them participate. Others have been excluded out of the fear by the public of being in contact with someone with that particular disability. If people don’t know that the person has a disability or the nature of that disability, such exclusion cannot occur. Hence, the emphasis on confidentiality.
In framing the implementation guidelines for the Americans with Disabilities Act, the Federal government followed its own precedent from Section 503 of the Rehabilitation Act. The ADA discusses confidentiality of disability-related information only in the context of employment (Title I). In that context, the guidelines discuss the confidential nature of medically-related information gathered in the context of employment decisions. From those basic tenets the policies and procedures that have been implemented in the post secondary realm have been developed over the years. It should be noted that much of what follows is a question of good practice in keeping with the spirit and intent of the law, and not something that necessarily can be quoted chapter-and-verse from the regulations.
The Family Education Rights and Privacy Act (FERPA), sometimes referred to as the “Buckley amendment”, provides for certain personnel of a given institution to have access to the educational records of enrolled students. However, medical information is not considered educational information and is specifically exempted from this policy. Because some disability-related information is clearly medical in nature (e.g., information about epilepsy, diabetes, use of medication, or even psychological disability), and because the ADA promises no lesser level of protection to someone with one disability than another, it seems an appropriate extension to consider all disability-related information to be medical information and to hold it with the same degree of confidentiality. It should be noted that in additional to ADA and FERPA guidelines, there may be state regulations regarding privacy of information or doctor-patient relationship that have overlapping protection.
Generally, information regarding disability is considered highly confidential, is maintained in separate, secure files with limited access, and is to be shared on a need-to-know basis. In this context, need-to-know could be defined as “needing to have knowledge in order to be prepared to take specific action.” If the individual would not do anything differently as a result of knowing the information regarding disability, then it would probably be inappropriate to share such information.
Recently, the EEOC was asked to provide guidance to a company regarding confidentiality of sensitive disability information. Specifically, the employer asked if it were appropriate and allowable to inform safety personnel of the fact that one of the employees was HIV+. The concern was that if an emergency occurred in which these personnel needed to administer first aid or CPR, they would be alerted to the need for precautions because of this individual’s status. The ruling from the EEOC was very quick and very specific. It is NOT appropriate to violate confidentiality in this way. The fact that the company is aware that this employee is HIV+ does not mean they have any idea of the HIV status of any of the other employees — any of whom may ALSO be HIV+! Therefore, in administering first aid or CPR, safety personnel should always be using “universal precautions”. If they are going to use such precautions in all emergency situations, then knowing that they are necessary with this particular individual would not trigger any different action or response on their behalf. Thus, they have no need to know.
Let’s translate that back to the postsecondary setting. John Doe, who has epilepsy, is enrolled in an English class. The student’s seizure activity is generally under control with medication, but the possibility exists that a seizure could occur during class. What information should be shared with the faculty member? The faculty member ought to know enough about assisting someone with epilepsy during a seizure to be prepared should such an occurrence arise as well as the institutional protocol for emergency situations (who should be notified and how). The faculty member needs to be informed of appropriate steps to follow, but does not need to know that John Doe is the student who may have a seizure. Specific knowledge of John’s identity does not change in any way the faculty member’s responsibility in such a situation. Faculty do not need to know which student, in their classes, may be subject to seizures, only that if a seizure occurs this is the procedure to follow.
Another example. Jane Smith has a learning disability. She has provided appropriate documentation to the disability service provider on campus and has requested accommodation. The service provider has determined from the documentation presented that Jane should receive double time on tests and have a notetaker. A letter is prepared for Jane to take to each of her faculty that indicates that she has a documented disability and will need these accommodations. The faculty member does not need to know what the disability is, only that the appropriate documentation has been provided to the appropriate source on campus and that this accommodation is necessary in order to fulfill the institution’s mandate for equal access under ADA/504. The faculty member’s actions in providing or facilitating the necessary accommodations will not change with the knowledge that these accommodations are being provided to someone with a learning disability, or an attention deficit disorder, or a psychological disability. Therefore, s/he does nor need to know the nature of the disability.
This does not mean that faculty are prohibited from asking the student for additional information if they believe they could better assist the student in maximizing learning with a better understanding of the disability and the need for accommodation. Faculty have the right to ask students directly about their disability and their need for accommodation, they just don’t have the right to access such information from the service provider who has been given that information and who holds that documentation for the purpose of establishing eligibility and assuring protection under the law.
What if someone would — or should! — do something differently as a result of knowledge of the disability? The need-to-know is determined on an individual basis and may vary with circumstances or over time. While John Doe’s English teacher does not need to know that John has epilepsy, it may be appropriate to share that information with the residence hall personnel. While Jane Smith’s instructor doesn’t need to know whether she has a learning disability, it may be appropriate for the tutor assigned to work with Jane to have that information. The tutor does not heed full access to the file, simply knowledge of the disability so that s/he can design appropriate tutoring strategies. More importantly, if there is concern about the safety of others, the institution’s obligation to take adequate care is no less of a priority than confidentiality for the person with a disability. A concern about confidentiality and protecting the rights of persons with disabilities is no excuse for not using common sense in applying the regulations, using good sense, and acting in good faith.