This chapter examines federal disability rights laws and provides an overview of their applicability to the parenting rights of Americans with disabilities. Specifically, the chapter examines the protections afforded by the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990 and their application to the efforts of people with disabilities to create and maintain families.

Federal Disability Rights Laws: An Overview

The landmark ADA and its predecessor, the Rehabilitation Act of 1973, established comprehensive national mandates prohibiting discrimination on the basis of disability. Collectively, these two laws prohibit public and private entities from discriminating against people with disabilities and ensure equal opportunity to participate in and benefit from a wide range of services and programs.

Under federal law, a person is defined as having a disability if he or she (a) has a physical or mental impairment that substantially limits one or more major life activities; (b) has a record of such impairment; or (c) is regarded as having such impairment.[120] Pursuant to the 2008 ADA amendments, major life activities include but are not limited to seeing, walking, and learning, as well as the operation of major bodily functions, such as the reproductive system.[121] The amendments clarify that the ADA covers people with episodic conditions, such as epilepsy. Today, a person is protected under the ADA if he or she has a disability that substantially limits a life activity when the condition is in an active state, even if the condition is not evident or does not limit a life activity at all times.[122] Furthermore, public entities and places of public accommodation may not discriminate against an “individual or entity because of the known disability of an individual with whom the individual or entity is known to have a relationship or association.”[123]

Rehabilitation Act of 1973

The first federal civil rights law protecting people with disabilities was the Rehabilitation Act of 1973.[124] The intent of the Rehabilitation Act is to “Empower individuals with disabilities to maximize employment, economic self-sufficiency, independence and inclusion and integration into society through…the guarantee of equal opportunity.”[125]

The most well-known provision of the Rehabilitation Act is Section 504, which states,

“No otherwise qualified individual with a disability . . . 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….”[126]

Section 504 prohibits discrimination against people with disabilities by programs conducted by federal agencies as well as any program or activity that receives federal financial assistance.[127] Section 504 applies to nearly all public schools, public and private colleges, human services programs (including the child welfare system and adoption agencies), and public housing agencies. Notably, Section 504 applies to all health care entities and providers that receive federal monies, including through Medicaid, Medicare, or federal block grants.

The Rehabilitation Act includes other significant provisions as well. Section 501 requires affirmative action and nondiscrimination in employment by federal agencies.[128]

Section 503 requires affirmative action and prohibits employment discrimination by federal government contractors and subcontractors with contracts of more than $10,000.[129] Section 508 requires that all electronic and information technology developed, maintained, procured, or used by the Federal Government must be accessible to people with disabilities, including employees.[130]

Americans with Disabilities Act

On July 26, 1990, President George W. Bush signed into law the Americans with Disabilities Act, which extended the protections and prohibitions of the Rehabilitation Act to private conduct, with the goal of reducing the social discrimination and stigma experienced by people with disabilities.[131] In passing the ADA, Congress recognized that “historically, society tended to isolate and segregate individuals with disabilities, and, despite some improvements, such forms of discrimination against individuals with disabilities continue to be a serious and pervasive social problem.”[132] In furtherance of the objective of eliminating discrimination, Congress stated that “the Nation’s proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for such individuals.”[133] In light of the ADA’s intended “clear and comprehensive national mandate for the elimination of discrimination,”[134] the ADA ensures the rights of people with disabilities to create and maintain families in a variety of ways. Indeed, before the passage of the ADA, Congress gathered an unprecedented amount of testimony concerning discrimination against people with disabilities, including stories of people with disabilities who had lost custody of their children[135] and people with disabilities who were denied the opportunity to adopt children.[136]

The ADA is divided into five titles that cover the various protections afforded by the law:

• Title I covers employment.[137]
• Title II Part A covers public entities: state and local government.[138]
• Title II Part B covers public transportation provided by public entities.[139]

• Title III covers private entities: public accommodations, commercial facilities, examinations and courses related to licensing or certification, and transportation provided to the public by private entities.[140]
• Title IV covers telecommunications.[141]
• Title V contains miscellaneous provisions.[142]

Titles II and III are most relevant here because they govern access to public entities run by state and local governments, and places of public accommodation, respectively.

Title II of the Americans with Disabilities Act

Title II of the ADA prohibits discrimination by public entities run or funded by state and local governments.[143] It mandates, “No qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity.”[144] The ADA defines public entity to include “any department, agency, special purpose district, or other instrumentality of a State or States or local government.”[145] Examples of covered programs and entities include state courts, state legislatures, town meetings, police and fire departments, and state and local offices and programs. Entities that receive federal financial assistance from DOJ, including state judicial systems, are also prohibited from discriminating on the basis of disability under Section 504 of the Rehabilitation Act.[146] Further, the Supreme Court has held that providing people with disabilities access to courts is a mandate of Title II. According to the Court, “Unequal treatment of disabled persons in the administration of judicial services has a long history,” which the ADA seeks to redress.[147] Title II (and Section 504) are thus crucial, because they mandate access for people with disabilities to the child welfare system, family law courts, and public adoption agencies.

Title II requires the following of public entities:

• Public entities must provide people with disabilities an equal opportunity to participate in programs, services or activities.[148] To implement this mandate, public entities must make reasonable modifications in policies, practices, or procedures unless such modifications would fundamentally alter the nature of the service, program or activity.[149]
• Public entities shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities;[150]
• Public entities shall not impose or apply eligibility criteria that screen out or tend to screen out any individual with a disability from fully and equally enjoying any service, program, or activity, unless such criteria can be shown to be necessary for the provision of the service, program, or activity being offered;[151]
• Public entities must furnish auxiliary aids and services when necessary to ensure effective communication, unless an undue burden or fundamental alteration would result;[152]
• Public entities may provide benefits, services, or advantages, beyond those required by the regulation, to people with disabilities;[153]
• Public entities may not place surcharges on individuals with disabilities to cover the costs of measures to ensure nondiscriminatory treatment, such as making necessary modifications required to provide program accessibility or providing qualified interpreters;[154]
• Public entities may not deny the benefits of programs, activities, and services to individuals with disabilities because entities’ facilities are inaccessible.[155] A public entity’s services, programs or activities, when viewed in their entirety, must be readily accessible to, and usable by, people with disabilities.[156]

Title II also requires newly constructed or altered facilities to comply with the ADA’s 2010 Standards for Accessible Design (2010 Standards), if the start date for construction is on or after March 15, 2012.[157] If elements in existing facilities already comply with corresponding elements in the 1991 Standards or the Uniform Federal Accessibility Standards (UFAS) and are not being altered, Title II entities are not required to make changes to those elements to bring them into compliance with the 2010 Standards.[158] Under the “program accessibility” standard, public entities are not necessarily required to make each of their existing facilities accessible if other methods are effective in achieving compliance with the regulations.[159] Instead, a public entity’s services, programs, or activities, when viewed in their entirety, must be readily accessible to, and usable by, people with disabilities.[160]

Examples of alternative methods to ensure accessibility include relocating a service to an accessible floor or facility, or providing the service at home. There are limits to the program accessibility requirement; public entities are not required to take any action that they can demonstrate would result in an “undue financial and administrative burden” or that would “fundamentally alter” the nature of the program, activity, or service.[161] However, they must take other necessary action to ensure that people with disabilities receive the benefits or services provided by the public entity.[162] Moreover, public entities may impose legitimate safety requirements necessary for the safe operation of services, programs, or activities.[163] However, the public entity must ensure that its safety requirements are based on actual risks, not on mere speculation, stereotypes, or generalizations about people with disabilities.[164] Similarly, public entities are not required to permit a person to participate in or benefit from its services, programs, or activities if that person poses a direct threat to the health or safety of others.[165] In determining whether a person poses a direct threat, a public entity must make an individualized assessment, based on reasonable judgment that relies on current medical knowledge or on the best available objective evidence, to ascertain the nature, duration, and severity of the risk; the probability that the potential injury will actually occur; and whether reasonable modifications of policies, practices, or procedures or the provision of auxiliary aids or services will mitigate the risk.[166]

Title III of the Americans with Disabilities Act

Title III of the ADA prohibits any public accommodation from discriminating against people with disabilities by denying them access to the full and equal enjoyment of goods, services, or facilities. Public accommodations include all areas open to the public, including restaurants, stores, banks, pharmacies, legal offices, doctors’ offices, and hospitals. Pursuant to Title III, “private entities are considered public accommodations if the operations of such entities affect commerce and fall within one of the 12 categories set out in the statute.”[167] Title III is relevant here because it unquestionably governs access to private adoptions, as it precisely includes “adoption agency” in the definition of public accommodations.1[68] Similarly, assisted reproductive technology providers must comply with Title III because they provide services in a health care provider’s office or hospital, which are included in the definition of public accommodations.

The purpose of Title III is to ensure that no person with a disability is denied goods or services offered to the public because of their disability. Under Title III,

• A public accommodation shall not impose or apply eligibility criteria that screen out or tend to screen out an individual with a disability from fully and equally enjoying any goods, services, facilities, privileges, advantages, or accommodations, unless such criteria can be shown to be necessary for the provision of such goods, services, etc.[169]
• A public accommodation shall make reasonable modifications in policies, practices, or procedures when such modifications are necessary to ensure that people with disabilities have access to the goods, services, facilities, privileges, advantages, or accommodations, unless the public accommodation can demonstrate that making the modifications would fundamentally alter the nature of such goods, services, etc.[170]
• A public accommodation shall take those steps that may be necessary to ensure that no individual with a disability is excluded, denied services, segregated or otherwise treated differently because of the absence of auxiliary aids and services, unless the public accommodation can demonstrate that taking those steps would result in a fundamental alteration or undue burden.[171]

Public accommodations must also provide physical access for people with disabilities.^[172] Generally, new construction and alterations must comply with the 2010 Standards if the start date for construction is on or after March 15, 2012. A public accommodation must remove architectural barriers where such removal is readily achievable; that is, easily accomplished without much difficulty or expense.[173] On or after March 15, 2012, elements in a facility that do not comply with the 1991 Standards requirements for those elements (e.g., where an existing restaurant has never undertaken readily achievable barrier removal) must be modified using the 2010 Standards to the extent readily achievable. The standards include revisions to the 1991 Standards as well as supplemental requirements for which there are no technical or scoping requirements in the 1991 Standards (such as swimming pools, play areas, marinas, and golf facilities). Public accommodations must comply with the 2010 Standards’ supplemental requirements in existing facilities to the extent readily achievable.

Public accommodations may deny a person the opportunity to participate in or benefit from the goods, services, facilities, privileges, advantages, and accommodations if the person poses a direct threat to the health or safety of others.[174] In determining whether a person poses a direct threat, a public accommodation must make an individualized assessment based on reasonable judgment that relies on current medical knowledge or on the best available objective evidence to ascertain the nature, duration, and severity of the risk; the probability that the potential injury will actually occur; and whether reasonable modifications of policies, practices, or procedures or the provision of auxiliary aids or services will mitigate the risk.[175] Moreover, public accommodations may impose legitimate safety requirements that are necessary for safe operation.[176] Safety requirements must be based on actual risks and not on mere speculation, stereotypes, or generalizations about people with disabilities.[177]

Ensuring Accessibility for the Whole Family

Despite the laudable requirements of the Rehabilitation Act and the ADA, parents with disabilities and their families continue to experience significant accessibility barriers. These barriers not only impede the abilities of these parents to fulfill their parenting responsibilities but also affect the entire family.

For example, parents with disabilities regularly experience accessibility barriers at their childrens’ schools and daycare centers. In October 2006, TLG convened 55 representatives from the Bay Area to initiate the Bay Area Parents with Disabilities and Deaf Parents Task Force.[178] According to TLG:

“Bay Area Task Force participants reiterated a frequent complaint of parents with disabilities nationally: they are excluded from active participation in their children’s school life. Typically, because the majority of children of disabled parents are not disabled, center and/or school administrators and teachers are unaware of or insensitive to the needs of parents with diverse disabilities. This can be [owing] to a number of factors: the physical inaccessibility of the center and/or school (e.g., inaccessible sites for a parent-teacher meeting or other school activities that other parents attend); inaccessible communication modes (e.g., no interpreters for deaf parents or inaccessible media for parents who are blind); assumptions about parents helping their children with homework if the materials are not in accessible formats. Further, because of a lack of education or familiarity with diverse disabilities, center and/or school officials may make inaccurate or negative assumptions about the capabilities of parents with disabilities.”[179]

The task force cited the following specific accessibility problems parents with disabilities encounter:

• Parents with disabilities do not know what their rights are with regard to their children’s centers and schools.
• Centers or school systems do not know what their legal obligations are with regard to parents with disabilities.
• Center or school administrators and teachers often do not know if any of their children’s parents have disabilities or are deaf.
• Communication from center or school personnel—in person, by phone, or by written communication— may be inaccessible or inappropriate (e.g., no interpreters, inaccessible formats for written materials, linguistically difficult information for parents with intellectual disabilities).
• Information from the centers or schools is often not sent in a timely manner (e.g., a parent may need several days’ notice to arrange transportation or get materials in braille).
• Even centers or schools that have classrooms/programs for children with disabilities may not consider the perspectives or needs of adults with disabilities or the fact that they can be parents.
• If there are multiple children in the family or if the child changes centers or schools, navigating different schools or different school districts can be challenging.
• Although most centers or schools include curricula on diverse ethnicities and languages, few address disabilities unless the focus is on children with disabilities.
• Deaf parents particularly noted that teachers inappropriately use their hearing children to interpret conversations between teachers and parents. Other parents with disabilities described center or school personnel who are visibly uncomfortable, paternalistic, or insensitive when talking with them.[180]

The parents with disabilities with whom NCD spoke reported encountering similar barriers. Christina,[181] a woman with significant physical and sensory (vision and hearing) disabilities and the single mother of three children, often encounters difficulties trying to get her children’s schools to provide her with interpreters and materials in accessible formats. Christina also is frustrated that she cannot watch school football games with other parents because the stands are not wheelchair accessible. Danielle,[182] a deaf mother, describes her experiences with her children’s schools as “hell,” explaining that the school, especially the after-school program, refuses to provide interpreters even though she has sent several letters and threatened a lawsuit.

Kathryn,[183] a wheelchair user and mother of one child, experienced significant difficulties finding an accessible home daycare center. After contacting more than 10 providers, she eventually found one that was willing to provide her an accommodation: The house is not wheelchair-accessible, but the provider meets Kathryn at her car and takes her daughter in.

Jessica,[184] a wheelchair user and mother of twins, told NCD that in addition to the accessibility barriers at her children’s school, which she describes as “awful,” the lack of accessibility in the community significantly affects her ability to care for her children. Community accessibility problems were identified in a 1997 national survey of parents with disabilities, conducted by Linda Barker and Vida Maralami under a contract from TLG: Sixty percent of parents reported barriers to accessing the community.[185] This survey also found significant barriers to employment (76 percent) and recreation (73 percent), presumably due, at least in part, to noncompliance with disability laws.[186]

The Rehabilitation Act and the ADA touch all aspects of the lives of parents with disabilities and their children. However, until these laws are fully complied with and enforced, countless families will continue to suffer. As Samantha,[187] a wheelchair user and mother, said, “Society must shift its focus from how do we accommodate people with disabilities to how do we accommodate people with disabilities and their children.”

Conclusion

The proper application of federal disability rights laws for parents with disabilities is crucial to achieving and promoting the purposes and goals of the Rehabilitation Act and the ADA: namely, the full participation of people with disabilities in society and protection against discrimination that would limit such participation. Until these laws are properly applied and enforced, people with disabilities will continue to face barriers to exercising their fundamental right to create and maintain families.