November 9, 2015
US Department of Health and Human Services
Office for Civil Rights
Hubert H. Humphrey Building, Room 509F
200 Independence Avenue SW
Washington, DC 20201
RE: 1557 NPRM (RIN 0945-AA02)
On September 8, 2015, the Department of Health and Human Services (HHS), Office of Civil Rights (OCR) published a Notice of Proposed Rule Making (NPRM) pursuant to Section 1557 of the Patient Protection and Affordable Care Act (ACA) (42 U.S.C. § 18116), which prohibits discrimination based on race, sex, age, or disability in certain health programs and activities. “Section 1557(c) of the ACA authorizes the Secretary of the Department to promulgate regulations to implement the nondiscrimination requirements of Section 1557. In addition, the Secretary is authorized to prescribe regulations for the Department's governance, conduct, and performance of its business, including, here, how HHS will apply the standards of Section 1557 to HHS-administered health programs and activities” (80 Fed Reg. 54172).
Established in 1940, the National Federation of the Blind is the oldest and largest consumer organization of the blind in the nation with approximately fifty thousand members participating through affiliates organized in each of the fifty states as well as Washington, DC and Puerto Rico. The National Federation of the Blind knows that blindness is not the characteristic that defines us or our future. Every day, we raise the expectations of blind people because low expectations create obstacles between blind people and our dreams. Blind people can live the lives we want: blindness is not what holds us back.
Like other adults, the typical blind person has the capacity to make appropriate life decisions, which include determinations about what health programs and activities best meet his or her needs. It is not necessary to involve a third party in making decisions about a blind person’s chosen health program or activity. Armed with the means to acquire information independently, a blind person is capable of making healthcare decisions and should be entitled to do so through independent access to electronic and information technology (EIT).
One of the most common forms of discrimination faced by blind Americans today is in the delivery of health programs and activities through electronic and information technology. Although technology holds the promise to break down barriers inherent in the brick and mortar/print worlds, and everyone generally supports the idea of making digital technology accessible to people with disabilities, the opportunity to expand the circle of participation has largely been missed. The reality is that technology manufacturers, distributors, and retailers rarely give any consideration to whether a product can be used by a blind person.
When inaccessible EIT is developed or deployed by a covered entity, it is tantamount to a declaration that “Everyone is allowed to use this product except people with disabilities,” and a tangible policy of exclusion. This practice embodies exactly the type of prohibited discrimination contemplated in Section 1557 of the ACA.
Discrimination Prohibited (§ 92.101)
“Proposed § 92.101 of subpart B prohibits discrimination on the basis of race, color, national origin, sex, age, or disability under any health program or activity to which Section 1557 or this part applies.” The NPRM defines “health program or activity” to include “…all of the operations of an entity principally engaged in providing or administering health services or health insurance coverage, such as a hospital, health clinic, community health center, group health plan, health insurance issuer, physician's practice, nursing facility, or residential or community-based treatment facility” (see NPRM Section 92.4).
First, we are disappointed that the definition does not include a prohibition against discrimination in the use of durable medical equipment covered under Medicare Part B.
This means that a blind consumer will have the misfortune of visiting a doctor’s office, receiving a prescription for medical equipment, but then discovering that the equipment is inaccessible, making it impossible for a blind person to use independently. It is imperative that HHS apply all aspects of the nondiscrimination provisions of the ACA to the accessibility of the durable medical equipment used in connection with health programs and activities.
Second, we nevertheless believe this definition of the term “health program or activity” is expansive enough to have other practical benefits for blind patients across the nation. For example, by applying ACA nondiscrimination provisions to “all of the operations of an entity,” the rules will require equal access during one of the most problematic stages of health care for blind patients: registration. When a blind patient seeks treatment at a doctor’s office (or “physician’s practice”), they are often expected to make appointments or fill out required documentation expected of new patients using an inaccessible online portal. The blind patient is forced to rely on a third party for assistance and, regardless of their personal relationship, disclose confidential information to that person such as the patient’s medical history, illnesses, medications, and history of disease or genetic patterns running in the patient’s family.
No one else is required to disclose such confidential information to anyone other than the patient’s chosen healthcare provider, and such a requirement would be unacceptable in the general public. The same is true for blind patients. Simply put, the development and use of inaccessible EIT systematically denies blind patients their right to privacy while participating in health programs and activities, and because all other patients enjoy that right, HHS has appropriately recognized the practice as discriminatory. We applaud the broad scope of the Proposed Rule.
Thirdly, and for the reasons described above, we urge HHS to apply the accessibility mandate even in “operations,” that may only require a blind employee to interact with the technology. The failure to build accessibility into the design of EIT affects more than blind consumers of health programs and activities, but it perpetuates discrimination against blind employees by the entities which conduct those programs and activities. In this context, Section 1557 of the ACA and the Proposed Rule would not necessarily guarantee fair employment practices (such as hiring, firing, promotions, and terms and conditions of employment), but rather it would supplement those protections by requiring accessibility of all EIT used in health programs and activities.
To elaborate, we observe that the NPRM would “… limit the ways in which the proposed rule applies to employment. Except as provided in § 92.208, which addresses employee health benefit programs, this proposed rule does not apply to discrimination by a covered entity against its own employees” (NPRM § 92.101).
Accordingly, the Proposed Rule does not appear to extend to “… hiring, firing, promotions, or terms and conditions of employment …; such claims would continue to be brought under other laws …” (NPRM § 92.101(a)(2)). But while the Proposed Rule does not specifically need to address hiring, firing, promotions, and terms and conditions of employment, widespread adoption of accessible technology is critical to the success of the laws that do. Moreover, the policy goals underlying Section 1557 of the ACA are aligned with the policy goals of other anti-discrimination statutes, which is presumably why the rule includes such overlap. It is both reasonable and practical for HHS to require employers receiving federal financial assistance, while operating health programs and activities, to use EIT which is accessible to blind employees.
It is clear that blind employees of federal agencies already benefit from nondiscrimination laws and policies, such as under the provisions of Section 508, which in relevant part states as follows.
When developing, procuring, maintaining, or using electronic and information technology, each federal department or agency, including the United States Postal Service, shall ensure, unless an undue burden would be imposed on the department or agency, that the electronic and information technology allows, regardless of the type of medium of the technology—
(i) individuals with disabilities who are federal employees to have access to and use of information and data that is comparable to the access to and use of the information and data by federal employees who are not individuals with disabilities; and
(ii) individuals with disabilities who are members of the public seeking information or services from a federal department or agency to have access to and use of information and data that is comparable to the access to and use of the information and data by such members of the public who are not individuals with disabilities. (29.U.S.C. 794d (a)(1)(A))
Furthermore, the Proposed Rule incorporates by reference the provisions of Section 504 of the Rehabilitation Act prohibiting discrimination against qualified persons with disabilities as follows. “No otherwise qualified individual with a disability in the United States … shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance or under any program or activity conducted by any Executive agency or by the United States Postal Service” (29 U.S.C. 794(a)).
We would submit that recipients of federal financial assistance who fail to allow disabled employees access to EIT in furtherance of health programs and activities are engaging in discrimination and should be subject to the remedies contemplated under 29 U.S.C. 794(a).
But it seems clear to us that a civil rights initiative, such as Section 1557 of the ACA, should complement these protections and facilitate their success by guaranteeing access to electronic and information technology for blind patients of a health clinic and also for a blind employee of the same clinic when such access is in furtherance of a health program or activity.
Moreover, consumer technology is converging into other forms of technology, and manufacturers tend to approach entire product lines through one innovative lens. To deny an employee of a health clinic guaranteed access to electronic and information technology that he/she could access as a patient would create a distinction without a difference.
Accessibility of Electronic and Information Technology (§ 92.204)
The Proposed Rule elaborates on this concept by requiring covered entities “… to ensure that their health programs or activities provided through electronic and information technology are accessible to individuals with disabilities, unless doing so would impose undue financial and administrative burdens or would result in a fundamental alteration in the nature of an entity's health program or activity” (NPRM § 92.204(a)). A review of the Proposed Rule reveals that terms such as “disability”, “individual with a disability”, and “qualified individual with a disability”, and a host of other terms whose definitions might be derived from their plain meaning are specifically defined. The Proposed Rule even declares that electronic and information technology itself must be “accessible” to people with disabilities; however, conspicuously absent from the list of US definitions in the Proposed Rule is the definition of the term “accessible” itself (see NPRM § 92.4). Thus, we cannot be certain what the term means as it relates to this NPRM.
The NPRM raises the question of whether a specific accessibility standard “could potentially place a greater burden on recipients of federal financial assistance and Title I entities.” Because the Access Board is working on updating the Section 508 standards, among other factors, the NPRM proposes to apply “…a general accessibility performance standard for electronic and information technology, rather than a requirement for conformance to a specific set of accessibility standards.” HHS seeks comment on “whether the regulation should impose a general accessibility performance standard for electronic and information technology or require that electronic and information technology comply with a specific set of standards, such as the Section 508 or WCAG standards” (NPRM § 92.204). We strongly urge HHS to adopt both a functional performance standard and measurable technical criteria. Compliance (or the absence thereof) is easier to determine when a specific standard is applied, and true usability is easier to achieve for large populations of users with differing skillsets when a functional performance standard guides the use of the technical criteria.
For the functional performance standard, we urge adoption of language similar to, “The person with a disability can enjoy all of the same functionality in an equally effective manner and with substantially equivalent ease of use as the non-disabled user.” Furthermore, for the measurable technical standard, we urge that HHS adopt the digital accessibility standards set forth in the Web Content Accessibility Guidelines (WCAG) 2.0, and that Level AA be the minimum benchmark. “All WCAG 2.0 Success Criteria are written as testable criteria for objectively determining if content satisfies them” (See the WCAG online publication entitled “Understanding Conformance – Understanding WCAG 2.0”). It seems to us clear that the only way to assure accessibility is through the promulgation of a consistent standard which applies to all covered entities.
It is profoundly important that HHS adopt a specific standard. Without criteria, accessibility (and thus, true equal access) is always measured in an ad-hoc, case by case basis, which not only puts the burden on the blind person to show that they are indeed facing discrimination, but encourages covered entities to provide “separate-but-equal” services using the old-fashioned accommodations approach. To combat this damaging trend, we must stimulate the marketplace to include accessibility, which means giving direction to developers and benchmarks for streamlined demand. A specific standard will also allow ACA-covered entities to procure that technology with confidence.
More specifically, there will be many practical benefits to selecting WCAG 2.0 Level AA as the benchmark for accessibility. WCAG success criteria is both robust and technology agnostic, meaning it is broken down by function rather than by product-type, and can apply to future innovations as well as current uses of technology. Moreover, the Access Board is modeling the refreshed 508 standards off of WCAG 2.0 Level AA, ensuring that HHS adoption of such a technical standard ensures there is one, universal set of accessibility benchmarks available to US developers across a wide range of industries. Similarly, the Office of the National Coordinator for Health Information Technology Organization (ONC) is in the process of updating the certification criteria for health-IT (formerly Electronic Health Record, EHR, technology) to include an accessibility criterion; we have urged ONC to adopt WCAG 2.0 as the objective benchmark for that criterion. It is critical that HHS select a specific standard that is measurable via objective means which can readily be applied to all EIT to promote access for all consumers including, as contemplated in Section 1557 of ACA, individuals with disabilities. Indeed, HHS, in the Proposed Rule, states (in determining how to apply Title II of the Americans with Disabilities Act (ADA) to covered entities in evaluating compliance) that it is appropriate to use one uniform standard.
We are pleased that HHS is holding itself to the standards it requires of covered entities under the Proposed Rule; however, we call upon HHS to establish a specific standard, or a uniform definition of accessibility, to promote consistency among providers of health programs and activities and allow for participation by individuals with disabilities. This goal would be accomplished by applying the WCAG 2.0 Level AA conformance guidelines.
An additional benefit of adopting WCAG 2.0 Level AA or another robust set of success criteria is that the numerous State-based Marketplaces and private entities will finally have some guidance regarding how to make their EIT accessible. Without a consistent standard of compliance, it would be impossible to determine whether covered entities are allowing people with disabilities to participate in health programs and activities provided through EIT (or whether they are engaging in prohibited discrimination) because there would be no authoritative source that can definitively indicate compliance. The Proposed Rule is lacking in this respect.
Regarding which entities should be required to meet these benchmarks, we note that Section 92.204(b) of the Proposed Rule would apply Title II of the ADA (42 U.S.C. § 12131) to all covered entities. As the Proposed Rule states, “Section 92.204(b) proposes to require State-based Marketplaces and recipients of federal financial assistance to ensure that their health programs and activities provided through Web sites comply with the accessibility requirements of Title II of the ADA” (citation omitted).
We support this requirement. Not only will state and local entities be required to meet the accessibility requirements of Title II of the ADA, but private entities receiving federal financial assistance operating places of public accommodations are required to meet the Title II standard as well. This perpetuates the application of a uniform approach to accessibility as a mandate, and will stimulate the larger marketplace to embrace accessible innovations.
Some providers of public accommodations may argue that, as private entities, they should not be held to the Title II standard; however, Section 1557 of the ACA does not in any way deny or abridge the rights granted under Section 504 of the Rehabilitation Act. Under Section 504, these entities are still obligated to provide equal access, which means only using EIT that is accessible to people with disabilities. Further, it is reasonable to hold recipients of federal financial assistance from HHS to the Title II ADA requirements (rather than those of Title III of the ADA), since Title II is modeled on Section 504, which applies to recipients of federal financial assistance (NPRM § 92.204(b). We wholeheartedly agree.
Enforcement Mechanisms (§ 92.301)
“This proposed section restates the language of Section 1557 regarding enforcement, which provides that the enforcement mechanisms under … Section 504 apply for violations of Section 1557. … In addition, based on the statutory language, a private right of action and damages for violations of Section 1557 are available to the same extent that such enforcement mechanisms are provided for and available under … Section 504 … with respect to recipients of federal financial assistance. A private right of action and damages are also available for violations of Section 1557 by Title I entities…” (NPRM 92.301).
Thus, it seems clear to us that the enforcement mechanisms under Section 1557 of the ACA in no way interfere with private rights of action and remedies available to consumers under Section 504 and other similar legislation. We therefore support Section 92.301 of the Proposed Rule and would call for its promulgation.
Relationship to Other Laws (§ 92.3)
We are pleased that the Proposed Rule and Section 1557 of the ACA establish rights in addition to those previously granted under other civil rights legislation prohibiting discrimination against people with disabilities, and we therefore support this provision of the Proposed Rule. Section 92.3 of the Proposed Rule contains the following language in reference to Section 1557(b) of the ACA.
In addition to the statutory references cited directly in Section 1557(b), the proposed rule includes the Architectural Barriers Act of 1968, 42 U.S.C. 4151-4157 (2012), the Americans with Disabilities Act of 1990, 42 U.S.C. 12101 et seq. (codified as amended by the Americans with Disabilities Amendments Act of 2008, Pub. L. 110-325, 122 Stat. 3553 (2008)) (ADA), and Section 508 of the Rehabilitation Act of 1973, 29 U.S.C. 794d (Section 508). These laws establish additional federal civil rights protections for individuals with disabilities, and covered entities must be mindful that the obligations imposed by those laws apply to them independent of the application of Section 1557. (NPRM § 92.3)
We believe the Proposed Rule is a step in the right direction; however, additional steps are needed. Regarding discrimination prohibited, we encourage HHS to expand the definition to include use of durable medical equipment under Medicare and to recognize the impact of inaccessible EIT on employees with disabilities in the health care setting. Additionally, in the area of accessibility to electronic and information technology for blind Americans, we strongly urge the adoption of a functional performance standard and measurable technical criteria.
The only way to guarantee that complete, independent access and participation in health programs and activities is actually occurring is to incorporate a definition of accessibility into the Proposed Rule and/or to implement a specific, uniform standard that can be measured to determine compliance and know for certain that discrimination has been addressed and prohibited by applicable law and regulations.
The accessibility standard which should be promulgated in this Rule is found in the conformance criteria contained in WCAG 2.0 Level AA. Applying these measurable, objective criteria will enable all entities engaged in the conduct of health programs and activities to serve people with disabilities more effectively; and just as important, if not more so, people with disabilities will finally be able to receive the same quality of service which members of the general public have come to expect.
John G. Paré
Executive Director for Advocacy and Policy
National Federation of the Blind