Accessibility Resource Center

Confidentiality and Disability

Confidentiality & Disability
Issues in Higher Education

CONFIDENTIALITY IN HIGHER EDUCATION

In the past two decades, students with disabilities have enrolled in institutions of higher education in increasing numbers. In the United States, these students are protected from discrimination under Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990, as amended (ADA); and in Canada, under the Canadian Charter of Rights and Freedoms of 1985. These mandates recognize that discrimination often occurs as a result of attitudinal barriers and misconceptions regarding the potential of persons with disabilities; they presume that the U.S. Constitutional right to privacy, whether articulated in the form of guidance or specific regulations, applies to the treatment of disability-related information. The Canadian Charter is consistent with these basic principles. The intent of this brochure is to provide information about how these principles and regulations impact day-to-day activities in postsecondary institutions and to suggest appropriate “best practices” to follow.
It should be noted that some states and provinces have separate rules regarding the confidentiality of files and information regarding disability. Some have incorporated interpretations of these statues that may vary from what you will read here. This information is officered as technical assistance and should not be considered legal advice.

WHAT ARE THE “BEST PRACTICES” REGARDING CONFIDENTIALITY?

• Disability-related information (DRI) should be handled under the same strict rules of confidentiality as is other medical information. This includes the comprehensive documentation that persons with disabilities are often required to provide to establish the existence of their disability and their need for accommodation or consideration.
• DRI should be collected and maintained on separate forms and kept in secure files with limited access.
• Specific DRI should be shared only on a limited basis within the institutional community. There must be a compelling reason for the release of that information to the institutional employee or agent seeking its disclose.

WHY SHOULD WE FOLLOW THESE PRACTICES?

Some DRI is clearly medical in nature, and must remain confidential as specifically required by Title I of the ADA. Other DRI might trigger negative connotations about the person with the disability. People whose disability is a result of HIV, seizure disorder, or psychiatric illness for example, deserve and expect to have their privacy protected in a highly confidential manner. Statutes regarding persons with disabilities promise to provide the same level of protection for any one individual, or class of individuals, with a disability that they do for another. Therefore, since some DRI must be guarded closely, keeping all information equally protected is a conservative, safe, and legally acceptable practice.

HOW CAN POSTSECONDARY INSTITUTIONS IMPLEMENT THESE “BEST PRACTICES?”

• One office or individual on campus should be assigned the responsibility for collecting and holding disability-related documentation for students with disabilities.
• The information regarding a student’s disability should be shared by those who hold the documentation on a limited basis, and only when there is compelling reason for such disclosure. This may mean sharing with faculty only the information that a student has a documented disability and need for accommodations(s). In the U.S., the Department of Justice (DOJ) has indicated that a faculty member generally does not have a need to know what the disability is, only that it has been appropriately verified by the individual (or office) assigned this responsibility on behalf of the institution.
• Thus, under such an interpretation, faculty would have no right to demand access to the actual documentation, including test scores, dates or names of professionals providing such documentation. Moreover the disclosure of unnecessary, specific DRI to those without a legally cognizable need to know, may have the unintended consequence of increasing the institution’s and/or individual faculty member/administrator’s vulnerability to charges of retaliation or harassment.
• Administrators may have a need to collect data such as how many students are being served, the nature of their disabilities, and recommended accommodations. Typically, they do not need personally identifiable information about those students for purposes of statistical or survey reporting. One way to protect the confidentiality of students with disabilities is to be careful that their names do not appear on general listings that may be circulated throughout the institutional community in other contexts.
• As record-keeping and communications at postsecondary institutions become increasingly computerized, it is important to note that information regarding some’s disability or their status as a person with a disability is sensitive and should be managed carefully. Interoffice correspondence regarding the needs of a student with a disability should not be placed in shared files without password protection. The same memo sent to a number of students with disabilities by computer with a multiple address listing, may lead to a violation of confidentiality by revealing the names of those students to each other.
• The need and/or extent of the disclosure of disability information may change with circumstances. For example, if a student with a disability moves into university housing, the residence hall staff may need to know about the condition in order to provide access in emergency situations. Similarly, if a student files a grievance regarding treatments by a faculty member, the administrator charged with handling the matter may need to know the specifics of the individual’s disability and history within the institution.

BUT DOESN’T FERPA GIVE FACULTY THE RIGHT TO MORE INFORMATION?

In the U.S., the Family Educations Rights and Privacy Act of 1974 (FERPA), also known as the Buckley Amendment, provides students with access to their own educational records. It also provides faculty with access to educational records that are kept in institutional files, regarding students at that institution. Treatment records of a physician, psychiatrist, psychologist, or other recognized professional are exempt from disclosure under FERPA. The Act exempts disability-related records that are used for support of the student and those made by and available only to the individual service provider or other professional acting on behalf of the student. Note that individual state laws may provide additional protection for the confidentiality of medical and mental health records. Communications other than educational records are not within the purview of FERPA and may be protected by various federal or state laws and privileges.

A WORD ABOUT PERSONS WITH DISABILITIES EMPLOYED BY THE INSTITUTION. . .

In the U.S., under the ADA, DRI regarding employees is also protected. Employment-related disability information may be held by the same office serving students with disabilities, or in an alternative secure location under the control of the administrator having responsibility for upholding the law as it relates to faculty and staff. Information regarding an employee’s disability is to be shared on a limited basis with supervisors or managers, as it relates to providing necessary accommodations; first-aid and safety personnel, for emergency purposes; and insurance companies, as necessary.

*Specific statutory and regulatory language on confidentiality is most readily found in the Americans with Disabilities Act, as amended, Title I at 42 U.S.C. ss12112(d)(3) & (4);29 C.F.R. ss1630.14.1630.16, the EEOC’s interpretive guidance and its Technical Assistance Manual, and at 34 C.F.R. s104.42 (4).

FOR FURTHER INFORMATION CONTACT:

• The Association on Higher Education And Disability (AHEAD),( www.ahead.org)
• U.S. Department of Justice, Disability Rights Section (www.justice.gov)
• U.S. Department of Education, Office for Civil Rights (www.ed.gov/ocr)
• In Canada: Provincial Human Rights Commission for the province or the appropriate Provincial Professional Licensing Agency (www.chrc-ccdp.ca)

The Association on Higher Education and Disability (AHEAD) is an international, multicultural organization of professionals committed to full participation in higher education for persons with disabilities. AHEAD is a vital resource, promoting excellence through education, communication, and training. For membership information visit us at www.ahead.org

To order copies of this brochure, visit the publications section of our web site: www.ahead.org
AHEAD Copyright 2011