O’Neill’s battle endured for a year and a half before both parties came to an agreement that gives the father visitation rights (ABC 7 Chicago, May 4, 2011, tinyurl.com/qhua84l). Although she was elated with the outcome, O’Neill told reporters that she was “disappointed that the courts allow for someone to question your ability to have custody based on your disability.”

Similarly, in 2010 a Missouri couple had their two-day-old daughter taken into custody by the state because both parents were blind (NBC Action News, July 21, 2010, tinyurl.com/ovc4o4h). This removal was not based on allegations of abuse, just a fear that the parents would be unable to care for their daughter. Because the couple was presumed unfit, for nearly two months they were permitted to visit their daughter only two to three times a week, for just an hour at a time, with a foster parent monitoring.

Questions arose within hours of their daughter’s birth, after awkward first attempts at breast-feeding—something many new mothers experience. Following this incident, a nurse wrote on a chart, “The child is without proper custody, support or care due to both parents being blind and they do not have specialized training to assist them.” Her words set into motion the state mechanisms intended to protect children from physical or sexual abuse, unsanitary conditions, neglect, or absence of basic needs being met. A social worker from the state came by the mother’s hospital room and asked her a variety of questions about how they would care for their daughter. The social worker then told the parents they would need 24-hour care for their daughter, which the parents replied they could not afford and did not need. Nonetheless, their daughter was taken into foster care, and a 57-day battle ensued before they were finally reunited with her.

Sadly, these experiences are not unique or uncommon. The fundamental right to parent without interference is protected by the U.S. Constitution and balanced by the judicially recognized power of the state to interfere to protect the well-being of its children. Factors used in both dependency court and family court proceedings to determine whether children need to become wards of the state and to determine which parent is the more competent custodian may be reasonable. Nonetheless, these rules have not been objectively or justly applied to parents with disabilities.

A Tragic Legacy

The eugenics movement plagued the first half of the 20th century, resulting in more than 30 states passing legislation permitting involuntary sterilization. This legislative trend was premised on the belief that people with disabilities and other “socially inadequate” populations would produce offspring who would be burdensome to society. The Supreme Court endorsed the legislative trend toward forced sterilization; as a result of these state statutes, by 1970 more than 65,000 Americans had been involuntarily sterilized. Even today, 23 years after the passage of the Americans with Disabilities Act (ADA), several states still have some form of involuntary sterilization law on their books.

The power of the eugenics ideology persists. Women with disabilities still contend with coercive tactics designed to encourage sterilization or abortion because they are deemed unfit for motherhood. Equally alarming, a growing trend is emerging toward sterilizing people with intellectual or psychiatric disabilities.

Parents with Disabilities Today

Despite this harrowing history, many people with disabilities still choose to become parents. Current research reveals that there are 4.1 million parents with disabilities in the United States, roughly 6.2 percent of all American parents with children under the age of 18. The rates are even higher for some subgroups of this population. For example, 13.9 percent of American Indian/Alaska Native parents and 8.8 percent of African American parents have a disability. Further, 6 percent of white, 5.5 percent of Latino/Hispanic, and 3.3 percent of Asian/Pacific Islander parents have a disability. Because of the paucity of data and research on the prevalence of parents with disabilities, these statistics likely underestimate significantly the number of parents with disabilities.

Parents with disabilities are the only distinct community of Americans who must struggle to retain—or even gain in some situations—custody of their children. Removal rates where parents have a psychiatric disability have been found to be as high as 70 percent to 80 percent; where the parent has an intellectual disability, 40 percent to 80 percent. In families where the parental disability is physical, 13 percent have reported discriminatory treatment in custody cases. Parents who are deaf or blind report extremely high rates of child removal and loss of parental rights. Parents with disabilities are more likely to lose custody of their children after divorce, have more difficulty in accessing reproductive health care, and face significant barriers to adopting children.

Clearly, the legal system is not protecting the rights of parents with disabilities and their children. Fully two-thirds of dependency statutes allow the court to reach the determination that a parent is unfit (a determination necessary to terminate parental rights) on the basis of the parent’s disability. In every state, disability may be considered in determining the best interest of a child for purposes of a custody determination in family or dependency court. In theory, a nexus should always be shown between the disability and harm to the child, so that a child is taken from a custodial parent only when the parent’s disability is creating a detriment that cannot be alleviated. However, this is not the reality.

Rocking the Cradle

Discrimination against parents with disabilities has been all too common throughout history, and it remains an obstacle to full equality for people with disabilities in the present. In September 2012 the National Council on Disability (NCD), an independent federal agency that advises the president, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities, released Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children (tinyurl.com/kqedg2p). The goal of Rocking the Cradle is to advance understanding and promote the rights of parents with disabilities and their children. The report provides a comprehensive review of the obstacles people with diverse disabilities—including intellectual and developmental, psychiatric, sensory, and physical disabilities—experience when exercising their fundamental right to create and maintain families, as well as persistent, systemic, and pervasive discrimination against parents with disabilities. Rocking the Cradle analyzes how U.S. disability law and policy apply to parents with disabilities in the child welfare and family law systems, and the disparate treatment of parents with disabilities and their children. Examination of the impediments prospective parents with disabilities encounter when accessing assisted reproductive technologies or adopting provides further examples of the need for comprehensive protection of these rights.

Rocking the Cradle recommends actions that should be taken immediately to ensure the rights of parents with disabilities and their children. Whether action is taken at the state or federal level, as an amendment or a new law, the need for action could not be more timely or clear.

What Can Attorneys Do?

As attorneys, you play an integral, and difficult, role in ensuring that these families are afforded the rights they deserve. Below are ways attorneys can work to ensure the rights of parents with disabilities and their children.

Advocacy through direct representation:

• Connect the parent with appropriate disability services (e.g., local Center for Independent Living) that can provide assistance with housing, employment, transportation, personal assistance services, and financial or health benefits.
• Make sure the parent receives an adapted parenting assessment by someone with experience evaluating parents with disabilities.
• Help the parent make a claim under the ADA as soon as possible. A parent may make an ADA claim by demonstrating that he or she is a qualified person with a disability who requires a reasonable accommodation of that disability by a public entity.
• Consider appealing and/or filing an ADA complaint in the federal court if: the removal was based solely on the parent’s disability; the court will not order accommodations of hearings, meetings, or services; or a decision of the court to continue jurisdiction over the child is not reasonable based on witness and expert testimony and other evidence. Also, if the parent is denied a reasonable accommodation, be prepared to appeal (where such process exists) or to file a complaint with the departmental, state, or federal agency empowered to investigate discrimination by the court or child welfare agency. At the federal level, a complaint can be filed with the U.S. Department of Justice (DOJ) as well as the U.S. Department of Health and Human Services (HHS) Office for Civil Rights.

Advocacy through legislative change:

• Contact local, state, and national elected officials and urge them to pass legislation that ensures the rights of parents with disabilities and their children. Such legislation should be in accordance with the language set forth in Rocking the Cradle.

Protecting Parents, Protecting Children

Although parents with disabilities are especially affected by the issues discussed here, they are not alone. Indeed, in no community is “the welfare of children . . . served by breaking up families based on fear and stereotype. If we are truly concerned about the welfare of children, we should invest more money and energy in preventive services for families rather than in parental rights termination and foster care. Our conception of the parent or parents as individuals, standing alone, without help from the broader community, does children no service.” (Chris Watkins, “Beyond Status: The Americans with Disabilities Act and the Parental Rights of People Labeled Developmentally Disabled or Mentally Retarded,” California Law Review 83 (1995): 1475)