Most of us would find it unacceptable for our medical information to be shared with anyone who asks for it. In fact, most of us prefer that such information remain private and confidential. We are not interested in other people assessing our mental and/or physical health, nor do we want to be the victims of discrimination based on what others think they know about us.
Here, we take a general look at the intersection of Federal civil rights laws requiring nondiscrimination on the basis of disability (along with collection of disability-related data), and the right to medical confidentiality and privacy under the Health Insurance Portability and Accountability Act (HIPAA). Although concepts discussed here may also apply to our workplaces, we are going to focus on the use of medical or disability-related information in the delivery of federally-assisted programs and activities.
As the equal opportunity (EO) professional for an agency, company, or organization operating federally-assisted programs and activities, you must know when you are entitled to collect medical information, how you use this information once you have it, where you store such information, and under what circumstances you disclose the information. Although the concepts discussed in this article may be applied to federally-assisted programs and activities across-the-board, for purposes of providing examples, we are going to focus on the delivery of U.S. Department of Labor-funded workforce development programs and activities governed by Section 188 of the Workforce Innovation and Opportunity Act (WIOA).
√ Origins of data collection under federal civil rights laws
To set the stage for data collection under Federal civil rights laws, we’ll start with Title VI of the Civil Rights Act of 1964 (Title VI). This impressive piece of legislation mandated nondiscrimination on the bases of race, color, and national origin in the delivery of federally-assisted programs and activities. And, companion legislation at Title VII of the Civil Rights Act of 1964 (Title VII) prohibited discrimination on the bases of race, color, and national origin in our employment practices. Data collection was an important component of these federal laws.
For example, U.S. Department of Labor (DOL) regulations implementing Title VI at 29 C.F.R. § 31.6(b) require, in part, the following:
In general, recipients should have available for the department racial and ethnic data showing the extent to which members of minority groups are beneficiaries of federally assisted programs.
29 C.F.R. § 31.6(b). The main purpose for this data collection is to measure a recipient’s performance and compliance with Title VI as it delivers federally-assisted training, aid, benefits, and services to its public.
For example, an American Job Network center is located in an area where 85 percent of the population is Hispanic, but the center’s data reveals that only 15 percent of persons it serves are Hispanic. This disparity may mean prohibited national origin-based discrimination has occurred at the center, thus signaling a need for the center to strengthen and expand its outreach in the community in addition to taking other actions.
As another example, data reveals that 80 percent of black persons are referred by the center to higher paying jobs with a local company, whereas only 20 percent of similarly-qualified white persons are referred to these higher paying jobs. Here, data collected indicates that the center may have engaged in discriminatory referral of applicants on the bases of race and/or color in violation of Title VI. Further investigation of the causes of this disparity would be required.
√ Disability-related civil rights laws
Federal disability-related nondiscrimination laws first surfaced in 1973 with enactment of the Rehabilitation Act. This statute prohibiting disability-related discrimination contained provisions that applied both to the delivery of federally-assisted programs and activities as well as to our employment practices. Again, certain data collection requirements were put in place. For example, in DOL-funded programs, 29 C.F.R. § 32.44(b) requires:
. . . recipients should have available for the Department data showing the extent to which known handicapped individuals are beneficiaries and participants in federally assisted programs or activities.
29 C.F.R. § 32.44(b). Likewise, the Americans with Disabilities Act (ADA) and the Americans with Disabilities Act Amendments Act (ADAAA), enacted in 1990 and 2008, respectively, expanded disability-related nondiscrimination requirements.
And, WIOA Section 188, which applies to the delivery of a variety of workforce development programs and activities, also contains protections for persons with disabilities. Notably, this statute requires nondiscrimination and equal opportunity with regard to serving persons with disabilities in programs and activities covered by WIOA Section 188.
Again, collection of disability-related or medical data under these statutes is designed to gauge compliance with their nondiscrimination requirements, determine appropriate accommodations, and/or assess whether the individual meets the essential eligibility requirements for targeted programs and activities. On the flip side, however, Federal authorities do not want this information to be used to engage in the very form of discrimination prohibited by these laws. Here, we are going to focus on the important requirements for gathering, using, storing, and disclosing medical and disability-related information in the context of delivering federally-assisted workforce development programs and activities.
√ Gathering medical or disability-related information
Using federally-assisted workforce development programs and activities as the backdrop for our discussion, DOL’s regulations implementing WIOA Section 188 set forth certain data collection and reporting requirements as follows:
Each recipient must record the race/ethnicity, sex, age, and where known, disability status of every applicant, registrant, participant, terminee, applicant for employment, and employee.
29 C.F.R. § 38.41(b)(2). The Labor Department’s Civil Rights Center emphasizes that, prior to asking any medical or disability-related questions, you must notify the individual of the following:
● providing the information is voluntary;
● the information will be kept confidential as provided by law;
● refusal to provide the information will not subject the individual to any adverse treatment; and
● the information will be used only in accordance with the law.
Keep in mind that gathering such information in connection with employment-related activities (such as referral for job training, or job placement) generally is illegal. But, for service-related activities (such as determining eligibility for unemployment insurance benefits), you have more discretion in gathering medical or disability-related information to determine: (1) if an individual meets the “essential eligibility requirements” for your program or activity, or (2) if the individual meets the requirements to participate in a “targeted” program or activity, or (3) the appropriate accommodation needed to allow the individual to participate in a program or activity.
√ Storing medical or disability-related information
Regardless of the circumstances under which you acquire medical or disability-related information, storing this information in an unsecured location, or sharing it without limitation, leaves the individual with a disability particularly susceptible to discrimination, and this conduct is prohibited by federal law. For example, regulations implementing WIOA Section 188 provide the following:
Any medical or disability-related information obtained about a particular individual, including information that could lead to the disclosure of a disability, must be collected on separate forms. All such information, whether in hard copy, electronic, or both, must be maintained in one or more separate files, apart from any other information about the individual, and treated as confidential. Whether these files are electronic or hard copy, they must be locked or otherwise secured (for example, through password protection).
29 C.F.R. § 38.41(b)(3).
Consequently, as the EO professional for your agency, company, or organization, it is highly-recommended that you keep all medical information obtained in conjunction with a reasonable accommodation request, or in conjunction with determining whether an individual meets the essential eligibility requirements for a particular service, aid, training, or benefit, in a folder that is completely separate from your program file on the individual. Moreover, the separate folder containing medical information should be in a secure location. This means that paper medical records or medical-related notations would be kept in a locked drawer or locked filing cabinet with very limited access. Electronic medical information should be password protected and/or encrypted and, again, with very limited access. Any employee of the recipient with access to these records must understand that s/he is strictly bound to adhere to confidentiality requirements pertaining to the records. Finally, you should review your agency’s or organization’s policies for time limits on storing such information—you will not keep an individual’s medical information indefinitely.
Look at the WIOA Nondiscrimination Plan for your state or territory to determine how you should handle confidential medical information. You also may seek guidance from your state EO leadership, or from the civil rights office of the Federal funding agency.
Keep in mind that the same confidentiality requirements are imposed on employers with regard to their employees. Namely, EEO/AA/HR professionals must ensure that all medical information pertaining to an employee is kept in a folder that is separate from the employee’s personnel record. And, the medical information folder must be kept confidential and secure. Look to the U.S. Equal Employment Opportunities Commission at www.dol.gov/ofccp.
√ Using medical or disability-related information
As previously noted, for your employment-related activities, the permitted uses of this information is very narrow. For example, as a job referral counsellor, it is illegal to “steer” a person with a disability to a particular job; rather, each person with a disability is entitled to individualized treatment. For service-related activities, on the other hand, medical or disability-related information may be used to assess reasonable accommodations, or to determine whether the individual meets the “essential eligibility requirements” to participate in a particular program or activity.
√ Disclosing medical or disability-related information
Confidentiality of medical and disability-related information is of paramount importance whether in the delivery of federally-assisted programs and activities, or in the workplace. Disclosure of such information must be made under extremely limited conditions. Some examples in federally-assisted workforce development programs may include disclosure to a training provider only to explain reasonable accommodation, or disclosure to first aid or safety personnel only if the condition may require emergency treatment.
As with gathering, storing, and using medical or disability-related information, it is critical to have written policies and procedures in place addressing the limited circumstances under which such information may be disclosed. If you need assistance with the development of such procedures, you may contact the civil rights office of your federal funding agency.
√ Understanding the role of HIPAA
HIPAA is not a federal civil rights law; rather, it is a health information privacy law. This law gives the individual control over who may review or receive his or her mental and/or physical health information, and it gives the individual certain rights over this information.
The interplay between a privacy law, like HIPAA, and a civil rights law is best demonstrated by example. For this purpose, we’ll look at a scenario arising under WIOA Section 188. As previously noted, WIOA Section 188 prohibits discrimination in federally-funded programs and activities on a wide variety of bases, including disability. Some examples of recipients operating WIOA-related programs and activities are American Job Network centers offering employment referral services, training, unemployment insurance centers, and Job Corps Centers offering educational programs and activities designed to enhance employability of youth. See 29 C.F.R. § 38.4 (definition of “recipient”).
You are the EO Officer for a Job Corps Center. Sam states he has low vision, and he requests reasonable accommodation by way of enhanced computer technology to enable him to participate in your educational programs. Sam wears glasses. As part of the accommodations process, you request medical documentation to support the requested accommodation.
HIPAA prohibits you from accessing Sam’s medical documentation directly from his health care providers. Rather, Sam must authorize the providers to release whatever medical information he desires for you to review. For your part, you will request only medical information from Sam that is necessary to make a decision on the appropriate accommodation for Sam.
Now, once Sam’s medical documentation is in your hands, the Federal civil rights law, WIOA Section 188, prohibits discrimination against Sam based on this information. Moreover, this statute limits your use and disclosure of this information, and it requires that you ensure confidentiality of this information; that is, you must keep this information in a file that is separate from Sam’s student or participant file. And, the medical file must be kept in a secured location with limited access.