Disability groups oppose new wellness proposal

stethoscope and medical form sit on a computer keyboard
Untenable Choice: Privacy v. Costly Insurance Penalties

Twice in the past year, the Equal Employment Opportunity Commission has proposed regulations that could force employees with disabilities to sacrifice their families’ medical privacy, or risk paying thousands of dollars in fines. This is the assertion made by the nation’s largest coalition of disability rights organizations in public comments submitted to the federal agency January 28 [PDF].

“Last year, the EEOC proposed to rewrite the ADA’s provisions concerning ‘voluntary’ wellness program inquiries to permit a ‘choice’ between exercising ADA rights and paying hefty penalties,” the Consortium for Citizens with Disabilities argued. “Following on the heels of that proposal, the EEOC’s new proposal – to read ‘spouse’ out of (the Genetic Information Nondiscrimination Act’s) statutory protections of family members’ health information and permit staggering financial penalties on families that choose to keep health information private – creates the impression that the agency is improperly rewriting Congressional enactments to serve a new policy goal: enabling workplace wellness programs to make it too costly for employees and their spouses to exercise their civil rights.”

As the EEOC sees it, the regulations are necessary to clarify arguably inconsistent rules for insurance companies and employers under the Affordable Care Act, the ADA and GINA.

Among the most celebrated aspects of the ACA is its prohibition on insurance companies from charging certain consumers higher premiums for similar services, most notably in the context of people with preexisting conditions. However, the ACA expressly allows insurers to hike premiums by as much as 30 percent when individuals and families refuse to disclose medical information necessary to analyze their health risks.

Such disclosure requirements, of course, are generally not allowed in the employee-employer context, where individuals expect a higher degree of privacy. Accordingly, both the ADA and GINA impose strict requirements for when employers can force employees to undergo medical examinations or disclose medical information.

The EEOC’s new proposals center on the types of financial inducements – in the form of rewards or penalties – employers can use to incentivize employees to participate in wellness programs. The EEOC agrees with the CCD that employers can not penalize employees who decline to participate in wellness programs, but the EEOC argues that these protections do not extend to employee’s spouses, when they are also covered by employer-sponsored health plans.

Last spring, the EEOC issued proposed regulations, interpreting the ADA to that effect.

On October 30, the EEOC released similar regulations for GINA, a separate law passed by Congress in 2008 that generally prohibits employers from “requesting, requiring or purchasing genetic information” from employees.

“There is minimal, if any, chance of determining information about an employee’s genetic make-up or predisposition to disease from information about current or past health status of the employee’s spouse,” the EEOC wrote in a Q&A accompanying the proposal.

The CCD argues that such limited privacy protection is shortsighted, and tantamount to forcing employee’s spouses to participate. It also argue that it “flies in the face” of the laws’ intent.

“The legislative history of GINA confirms that Congress intended to protect the health information of employee’s spouses…, regardless of whether it would reveal information about employee’s genetic makeup,” the CCD states. ‘Congress’s concerns included protecting employees from discrimination based on fears about the family member’s health care costs.”

The CCD expressed similar sentiments in public comments opposing the ADA-related proposal last spring [PDF], as did American Association of People with Disabilities, the Bazelon Center for Mental Health Law, who also submitted public comments.

The EEOC has not issued a timeline for when it would finalize either rule.

Twenty-four disability rights groups, including the National Disability Rights Network, signed onto the CCD’s comments.

Disability Rights Washington, the publisher of Rooted in Rights, is the designated protection and advocacy agency in Washington, and a member of the National Disability Rights Network.