protection matters fi nalized at two Sydney Children's Courts over a nine-month .... parent-child relationship was severed before any support services were ...
Journal of Social Welfare and Family Law 24(3) 2002: 297–317
Stereotypes, parents with intellectual disability and child protection David McConnell and Gwynnyth Llewellyn Faculty of Health Sciences, University of Sydney
Abstract: As more people with intellectual disability have children, serious concerns are being raised about the unusually high rate at which their children are removed. This review describes how parents with intellectual disability fare in child protection and court processes and offers both an empirical and a legal critique of frequently encountered presumptions about their parenting capacity. Keywords: child removal, intellectual disability, parenting, discrimination The freedom to reproduce and to raise children is generally taken for granted. This is not the case for people with intellectual disability.1 The commonplace practices of institutionalization and sterilization have denied many people with intellectual disability the opportunity to be parents. Involuntary sterilization is now banned, or at least more tightly controlled, in many jurisdictions, so that becoming a parent is a more realistic aspiration for today’s generation of young adults with intellectual disability (Budd and Greenspan, 1984; Dowdney and Skuse, 1993; Llewellyn, 1990; Tymchuk and Feldman, 1991 ). However, successive international studies have reported unusually high rates, in the range of 40 per cent to 60 per cent, of children being removed from their parents with intellectual disability (Accardo and Whitman, 1990; Booth and Booth, 1995; Gillberg and Geijer-Karlsson, 1983; Mir n-Veitch et al., 1999; Pixa-Kettner, 1998; Shaw and Wright, 1960; Schilling et al., 1982 ). Removing any child who is in need of care and protection is not at issue in this review. There will be children of parents with intellectual disability (as with other parents) who will need to be removed to ensure their health, safety and wellbeing. When any child’s welfare is at stake, society should intervene as prescribed by the United Nations Convention on the Rights of the Child (1990 ) and the laws of many countries around the world. Our concern in this article is with the worrying evidence which suggests that there is unnecessary, unwarranted and all-too-frequent removal of children when their parents have Journal of Social Welfare and Family Law ISSN 0141-8033 print/ISSN 1469-9621 online © 2002 Taylor & Francis Ltd http://www.tandf.co.uk/journals DOI: 10.1080/09649060210161294
298
Journal of Social Welfare and Family Law 24(3) 2002
an intellectual disability and that the grounds for such removal are not related to protection of the child, but rather to misguided or prejudicial ideas about parents with intellectual disability. For some time, scholars in North America, the United Kingdom and Australia have voiced concerns about the processes and decision-making in child protection cases featuring parents with intellectual disability (Andron and Tymchuk, 1987; Booth and Booth, 1993; Budd and Greenspan, 1984; Feldman, 1986; Gilhool and Gran, 1985; Haavik and Meninger, 1981; Hayman, 1990; Hertz, 1979; Levesque, 1996; Llewellyn, 1990; Marafino, 1990; McConnell and Llewellyn, 2000; Payne, 1978; Watkins, 1995). In some instances, it appears that the individual capabilities and unique circumstances of each parent are not given due consideration by child protection authorities and courts. In other cases, parents who need help with their children are not being offered these services prior to their children being removed. The purpose of this article is to review the evidence on how parents with intellectual disability fare in child protection and court proceedings, to highlight empirical and legal concerns and nally to offer some recommendations for reform of these processes in respect of their application to the growing numbers of parents with intellectual disability that are coming before child protection systems worldwide. De nition and prevalence of parents with intellectual disability There is no universally accepted definition of intellectual disability and the criteria used to classify intellectual disability continue to change over time. Intellectual disability is an intangible and evolving concept; it is not a disease or disorder. The conceptual nature of intellectual disability is illustrated by the evolving classificatory system of the American Association on Mental Retardation (AAMR) and the range of criteria that researchers use in order to identify potential research participants. The AAMR has revised its definition and classificatory system six times in the past ve decades (Luckasson et al., 1992 ). Performance on a standard intelligence test has remained a criterion during this time. However, the intelligence quotient (IQ) ceiling for the classi cation of mental retardation has changed from one to two standard deviations below the mean (MacMillan et al., 1993 ). The speci cation that mental retardation manifests itself in the developmental period has also remained constant, although the developmental period now extends to 18 years (Grossman, 1983 ). In 1959, the criterion of adaptive behaviour de cits was introduced (Heber, 1959 ) to account for items such as maturation, learning and social adjustment. In the most recent system (Luckasson et al., 1992 ), intellectual disability is conceptualized as a state in which functioning is impaired rather than a trait expressed solely by the individual. How people function is understood to re ect the interaction between their capabilities (intelligence and adaptive skill) and the structure and demands of their environment. In this system, the concept of adaptive skill replaces that of adaptive behaviour. For a diagnosis of intellectual disability, signi cantly
Stereotypes, parents with intellectual disability
299
sub-average intellectual functioning must now exist concurrently with related limitations in two or more of the following adaptive skill areas: communication, self care, home living, social skills, community use, self-direction, health and safety, academic functioning, leisure and work. Inclusion criteria used by researchers studying parents with intellectual disability also vary across time and place. Previous institutionalization is one popular sampling criterion (e.g. Floor et al., 1975; Michelson, 1947; Peck and Stephens, 1965 ). In more recent studies, parents with intellectual disability are de ned on the basis of IQ scores alone, although cut-off scores vary markedly (e.g. Feldman et al., 1986; Keltner, 1994; Unger and Howes, 1988). A ‘social systems’ definition of intellectual disability (Mercer, 1973 ) as a criterion is also popular (e.g. Booth and Booth, 1995; Feldman et al., 1985; Llewellyn et al., 1998; Llewellyn et al., 1999 ). In this approach, parents meet the inclusion criteria if a key informant (usually a service provider ) identi es them as having an intellectual disability and/or they use or have used specialist services intended for people with this disability. Against this background of definitional difficulties, it is not surprising that the prevalence of parents with intellectual disability is poorly understood. Two recent estimates come from Australia and New Zealand. In Australia, McConnell et al. (2000 ) suggest a possible prevalence rate of less than 1 per cent based on the Australian Bureau of Statistics (1993 ) estimate that 0.99 per cent of the general population have an intellectual disability. Another estimate comes from a New Zealand study (Mir n-Veitch et al., 1999 ). Using the key informant method and the statistical estimation technique of capture-recapture, the authors ascertained a prevalence figure of 0.25 per cent. Despite uncertainty about reliable prevalence estimates, there is general agreement in the literature that more people with intellectual disability are becoming parents as opportunities for community living expand (Booth and Booth, 1993; Dowdney and Skuse, 1993; Tymchuk and Feldman, 1991 ). High rates of child removal and differential court outcomes The unusually high rates of child removal reported internationally suggest that many parents with intellectual disability will lose their children. In the USA, Accardo and Whitman (1989 ) reviewed hospital records and found that of 226 children born to seventy-nine families headed by a parent with intellectual disability, nearly half (45.5 per cent) had been removed. A Swedish study found an almost identical gure, with 45 per cent (eighteen) of forty children living in foster homes (Gillberg and Geijer-Karlsson, 1983 ). In the New Zealand study mentioned above, forty-six individual parents with intellectual disability were identi ed and of their ninety-six children, thirty-nine (41 per cent ) had been removed (Mirfin-Veitch et al., 1999 ). An Australian study presents a similar picture. In South Australia, seventy-seven parents with intellectual disability were identi ed who were known to have had 116 children; one-third of these had been taken into care (Bowden, 1994). Despite the consistency of these ndings, potential sample selection bias
300
Journal of Social Welfare and Family Law 24(3) 2002
suggests that cautious interpretation is warranted about whether these gures apply to all parents with intellectual disability. Parents with intellectual disability included in research studies tend to be those who are already known to service providers or those with histories of institutionalization (Feldman, 1986; Llewellyn, 1990; McConnell and Llewellyn, 1998; Tymchuk and Andron, 1990 ). Parent samples are therefore likely to be biased towards those experiencing greater dif culties. A more reliable indication of the extent to which parents with intellectual disability are subject to state intervention comes from two court-based prevalence and outcome studies (McConnell et al., 2000; Taylor et al., 1991 ). Based on the crude estimate that less than 1 per cent of all parents in any given population have an intellectual disability, both studies found signi cant over-representation and more intrusive outcomes for parents with intellectual disability. In the North American study, Taylor et al. (1991 ) examined 206 consecutive cases before the juvenile court in Boston in 1985/86. Cases where the primary concern was sexual abuse or in which the child or children were older than 12 years were excluded. In ten cases (approximately 5 per cent of the total sample), either one or both parents had an intellectual disability (IQ 70 and
