The cradle has been rocked: National report released on parenting and disability
By Erin E. Andrews, PsyD
Approximately one in five Americans (i.e., roughly 50 million Americans) currently lives with a disability (US Department of Education, 2007). Over the next one or two decades, with the US population aging, the return of military veterans, and advances in health care that make survival increasingly possible after major illness and injury, the number of people living with one or more physical, cognitive, intellectual, sensory or psychiatric disabilities is projected to expand considerably. In September 2012, the National Council on Disability (NCD) released an important report entitled "Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children." This document provides a comprehensive review of pertinent social and legal issues relevant to the parenting rights of individuals with disabilities. This article will highlight some of the most relevant findings to the field of psychology and disability.
The NCD report opens with an overview of the history of reproductive and parenting rights among people with disabilities. Those unfamiliar with disability history may be surprised to learn that the eugenics movement strongly influenced policy around reproductive rights. This movement resulted in forced sterilization of persons with disabilities, compulsory abortions for women with disabilities or fetuses identified as disabled and removal of custody based on the presence of disability. Still today, the influences of the eugenics movement persist; although some tactics may be more subtle, such as coercion toward sterilization or abortion or discouragement from procreation, others remain blatant: there remain 22 US states with some current form of involuntary sterilization laws in existence. Information gathered by the NCD suggests that 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.
The NCD report provides some of the best information to date on the removal rate of children from parents with disabilities, which is disproportionately high compared to that of parents without disabilities. As discussed in the report, there is a dearth of information about the experiences of parents with disabilities, influenced by a lack of research funding in this area. Many federal agencies that collect parenting data do not include disability as a demographic or diversity variable, and many agencies collecting disability data do not inquire about parenting status, resulting in missed opportunities for data collection.
Discrimination against parents with disabilities too often allows for the separation of children from parents with disabilities based on disability, without sufficient evidence that disability factors cause harm to the child, or that such separation is in the best interest of the child. In other words, instead of considering factors that directly affect the well-being of the child, disability itself is classified as a parenting detriment. Parents with disabilities have disproportionately higher rates of involvement with child welfare systems. The fact that disability itself can be used as grounds for separation is a major civil rights issue highlighted by the NCD report. Biases that parents with disabilities are less fit than parents without disabilities is pervasive in the legal system, including the erroneous stereotype that parents with disabilities will use their children as caregivers. This results in discrimination against parents with disabilities in custody or visitation disputes in the family law system, according to findings from the NCD. Additionally, parents with disabilities may encounter difficulty obtaining effective legal representation.
Parenting assessments may be inappropriate if not adapted for those with disabilities, and resources are lacking to provide adapted services, adaptive parenting equipment, and to teach adapted parenting techniques. "Rocking the Cradle" draws heavily on psychological research and APA guidelines on child custody evaluations in family law, evaluations in child protection matters, and assessment and intervention with people with disabilities. In this realm, psychological tests, such as measures of intelligence, may be used to determine whether or not someone with a disability is a capable parent, particularly those with intellectual or developmental disabilities. The NCD report suggests that reliance on a single factor such as IQ without incorporating multiple sources of data, such as observation of parent-child interaction, or considering how personal assistance or adaptive parenting could be incorporated, may not be in the best interest of either the parent or the child. The NCD recommends child custody evaluators follow the American Psychological Association Guidelines for Assessment of and Intervention with Persons with Disabilities.
In terms of adoption, the NCD report concluded that prospective adoptive parents with disabilities face significant barriers to adopting children, both domestically and internationally, and that people with disabilities regularly encounter discriminatory practices that eliminate them as potential parents solely because of their disabilities, under the assumption that the presence of disability precludes the ability to effectively parent. Individuals with disabilities that require or desire assisted reproductive technologies, such as artificial insemination or in-vitro fertilization, also face substantial discrimination based on assumptions that people with disabilities are not fit parents, as well as prohibitive costs and lack of insurance coverage associated with assisted reproductive technologies.
Another important area discussed in the NCD report is the fact that parenting is not considered an activity of daily living or instrumental activity of daily living, and therefore personal assistance services may not be used to assist with parenting activities. "Rocking the Cradle" also discusses the barriers faced by parents with disabilities in terms of housing and transportation, as well as economic disadvantages which impact families.
The NCD report specifically highlights the difficulty faced by women with disabilities in receiving adequate reproductive health care. Significant environmental and attitudinal barriers exist to receiving accessible, affordable and appropriate reproductive health care. Health care providers do not receive adequate training to provide culturally-competent care with those with disabilities. Parents with disabilities also lack access to peer support (particularly those with intellectual and developmental disabilities), according to the report. A particularly disadvantaged group of parents with disabilities identified by the NCD data are American Indian/Alaskan Native (AI/AN) families, who are more likely to have individuals with disabilities in their families and experience increased rates of government-sponsored removal of their children.
Overall, "Rocking the Cradle" effectively makes the case for the rights of people with disabilities to create and maintain families, and sheds light upon barriers which interfere with this fundamental human right. Cogent recommendations for policy are offered by NCD. The work of many psychologists who specialize in disability issues are cited in the NCD report. Strides are being made in conducting research and collecting data about the experiences of parents with disabilities are their children, but more work has yet to be done. Psychologists must play an important role in this endeavor.
The full report "Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children" is available on NCD's website.
About the Author
Erin Andrews, PsyD, is a psychologist with the Central Texas Veterans Affairs Health Care System.