The primary characteristics of intellectual disability (ID) are limited mentation and deficits in adaptive behaviors that are necessary to complete life skills (American Psychiatric Association, 2013). Are individuals with ID capable of comprehending the consequences of sexual activity? This may not be possible for people with severely impaired abilities. For instance, some women with ID may not be able to understand or cope with their changing bodies. Likewise, some people with ID struggle with basic self-care. Could society reasonably expect them to adequately care for a child as well? Opponents argue that many people without ID face the same child care challenges and there are other environmental variables that heavily influence a child’s well-being.
Through the 1960’s, people with intellectual disabilities were often institutionalized and, due to fears that procreation perpetuated disability, subjected to sexual denial and suppression; from 1880 to 1940, individuals with ID were involuntarily sterilized (Kempton & Kahn, 1991). Civil rights activism led to widespread deinstitutionalization in the 1970s, resulting in the re-integration of people with intellectual disabilities into the community (MacLean &Aunos, 2010). The transition was exceptionally difficult for the population, for whom little services were available. This oversight was further hampered by widely held beliefs that people with intellectual disabilities could not procreate due to their genetic make-up and because most had been sterilized. However, people with intellectual disabilities adopted the values and goals of the broader society, including the desire to form relationships and have children. While data collection has been poor in recent years, there were an estimated 1.4 million severely ID parents in 1997 (Randolph, 2003). As a result, a need emerged for education in social skills, sexual health and reproduction, and protection from vulnerability and abuse. Similarly, supportive parenting services became necessary. This paper will address the question of whether people with intellectual disability can be adequate parents, as well as methods and support systems for improving parenting abilities and child outcomes.
Summary of Issue
While there is growing interest in the topic, there is relatively little research on parenting by persons with ID. The health status for ID parents (primarily mothers) and their children is the primary focus of most research. Several studies have focused on prenatal care and birth outcomes, while population surveys have been the primary form of data collection used to examine well-being of offspring in early childhood (Llewellyn & Hindmarsh, 2015; Sussman et al., 2009).
From what little discussion exists on parenting by persons with ID, there tends to be two positions. The first focuses on identifying inherent risks that cognitive limitations bring to the role of parenting children; the other focuses on the rights of individuals with ID, identifies stereotypes and attempts to validate and support parents with ID as equal members of society (Randolph, 2003). Regardless of opinion, parenting by individuals with ID is widespread and does effect the well-being of children, and there is much to accomplish regarding policies and legislation that address this issue.
Much of recent research has focused on the health status of ID parents and their children. In a 2008 study by McConnell, Mayes and Llewellyn, mothers identified as having an intellectual disability had higher rates of pre-eclampsia (22.2%) than other groups of mothers (9.1%) (Llewellyn & Hindmarsh, 2015). Similarly, a 2012 study found that newborns of mothers with ID had higher risks for perinatal death and low birth weights; additional findings of this study showed that ID mothers had higher associations with cesarean sections, preterm birth, five minute Apgar scores of less than 7, and discharge to a place other than home (Hoglund, Lindgren & Larsson, 2012).
Secondary analysis of previous research studies has provided means to examine outcomes for ID parents and their children in child welfare proceedings. The focus was initially driven by observations that in clinical samples of ID mothers, a high percentage had their children removed (Aunos & Feldman, 2004), and that overall, 40% of children of ID parents were no longer living with their biological parents (Booth & Booth, 2004). Two of the most often used descriptors of ID parents are that they are prone to abuse and/or neglect their children (Tymchuk, 1992). Often, children are endangered when ID parents are unaware of things such as how to hold or safely bathe the child, how to make the environment safe, or how to properly sterilize bottles and adequately feed the child; additionally, an ID parent may fail to provide a stimulating home environment—which may cause behavioral problems or developmental delays for the child (Randolph, 2003).
In a 2003 report, the National Resource Center for Foster Care and Permanency Planning claims that some studies have shown that while ID parents are disproportionately represented in childcare proceedings. This is likely because the parenting support programs they received were inadequate, or may not have existed at all. Additionally, they argue that existing stigmas against disabled parents leave them vulnerable to having their parental rights terminated—based on evidence that would not hold up against abled parents. In addition to having their competence as parents judged against stricter criteria than other parents, ID parents are disadvantaged in the complicated court process by their own limitations and inadequacies in services.
However, there are indications that some ID parents can adequately care for a child if they are given appropriate training and support. In a 2004 publication, McMahon identifies people with cognitive limitations as still possessing a wide range of strengths and resources. These may include resilience, a sense of humor, special talents, and jobs they love. Many have a strong network of supportive friends and helping professionals, and their families are often supportive of them. Virtually all parents with cognitive limitations feel tremendous love for their children and want them to grow up healthy and happy; they want to be good parents.
Although their IQs will not change, most people with cognitive limitations possess the ability to learn. Individuals in this population often continue to develop skills for managing day- to-day life throughout their lives. Formal instruction, tailored to their needs, has been effective in helping people with cognitive limitations develop life skills (Coren, Hutchfield, & Gustafsson, 2009). A systematic review of several studies indicated that interventions such as parent training programs, self-directed learning, home safety interventions and supportive peer relationships improved parent-child interactions, safe home practices, recognition of child illness and appropriate usage of medicines as well as overall improvements in childcare and safety (Coren et al., 2010).