Existing literature suggests that youth with intellectual disabilities are at increased risk for child maltreatment. Little is known about youth with intellectual disabilities who are supervised by child welfare authorities or living in foster care. Reasons for child welfare system involvement and placement types are explored. In this cross-sectional exploratory study, we drew on data from the Adoption and Foster Care Reporting System (AFCARS) for youth in 46 states, the District of Columbia, and Puerto Rico. A sample of 17,714 youth with intellectual disabilities and a comparison group (n = 655,536) were identified for 1999. Findings have implications for preventing the removal of youth from caregivers and the promotion of community inclusion of foster youth while in foster care.
Existing literature suggests that youth with intellectual disabilities are at increased risk of maltreatment in the form of abuse or neglect (Hughes & Rycus, 1998; Jonson-Reid, Drake, Kim, Porterfield, & Han, 2004; Sullivan & Knutson, 2000; Vig & Kaminer, 2002; Westat, Inc., 1993). Once child maltreatment (e.g., neglect and/or abuse) has been identified and substantiated by child protection workers, youth may or may not be placed in foster care (i.e., they may remain with their families under child protection services supervision). However, there are no estimates for either the prevalence of youth with intellectual disabilities living in foster care as a result of child protection services involvement (Weaver, Keller, & Loyek, 2005). In addition, little is known about the reasons why youth with intellectual disabilities who are either living in foster care or who are being supervised by child welfare agencies have come to the attention of child welfare authorities. There is also minimal information on where foster youth with intellectual disabilities are placed and the extent to which these placements are stable (Bonner, Crow, Hensley, 1997).
Understanding more about these two factors and ways in which they impact the lives of youth with intellectual disabilities is vital given the trauma they may have experienced due to maltreatment, investigation of that maltreatment, and/or their removal from families and/or caregivers. These sources of trauma, coupled with the impact of living as a foster child, can be detrimental in both the short- and long-term (Strickler, 2001; Weaver et al., 2005). The lack of a sense of belonging, disrupted family-based identity, attachment disorders, emotional distress, and the stigma of living in foster care are all documented risk factors for foster youth in general (Barahal, Waterman, & Martin, 1981; Mallon & McCartt Hess, 2005). Research also suggests that youth who grow up in or spend extended periods of time living in foster care are less likely to establish the personal and lifelong connections that will guide them into adulthood upon “aging out” of foster care (Renne & Mallon, 2005). These potentially negative experiences may function together to create cumulative risk for negative life outcomes, including mental illness, lower levels of education, and limited employment (Pecora et al., 2007).
All of the risk factors associated with foster care placement in general are likely to be equally present for youth with intellectual disabilities. It is possible that foster youth with intellectual disabilities are especially vulnerable to the potential socioeconomic and psychological stressors associated with foster care that may particularly impede community inclusion. In addition, placement instability, a noted concern for all foster youth, is an especially important factor to consider vis-à-vis the quality of life of foster youth with intellectual disabilities (D'Andrade, 2005; Schormans, Coniega, & Renwick, 2006).
Increased Risk of Maltreatment for Youth With Intellectual Disabilities
Maltreatment risk factors among youth with intellectual disabilities mirror those for all youth (Strickler, 2001). However, youth with intellectual disabilities and their families may be vulnerable to additional disability-specific risks that, in turn, may lead to maltreatment. Youth with intellectual disabilities may demonstrate “impaired communication, poor self-defense abilities and the potential for exhibiting problem behaviors” (Shannon & Agorastu, 2006, p. 352), which may create pathways to maltreatment. Parents of youth with intellectual disabilities may experience increased frustration, isolation, and stress due to extra physical or financial demands, inadequate circles of support, and the potential fears or disappointments associated with parenting a child with intellectual disabilities (Martinson, 1990; Stickler, 2001; Valentine, 1990; Verdugo, Bermejo, & Fuertes, 1995).
Such stress and frustration, and any potential risk, is likely exacerbated by lack of adequate parental knowledge about the management of life with a child who has a disability or awareness of how to navigate the social service systems set up to support people with disabilities (Vig & Kaminer, 2002). Raising a child with a disability can be a challenge for parents who are functioning well but may present an extra challenge for parents with pre-existing mental illness, substance abuse, or developmental concerns of their own—three common parental risk factors among child protection services-involved families (Jellinek, Bishop, Murphy, Biederman, & Rosenbaum, 1992; Maluccio & Ainsworth, 2003). There is evidence that youth with intellectual disabilities experience challenges in the development of healthy attachment to caretakers, potentially causing a cyclical effect in which initially responsive parents could later become discouraged due to the potential for a lack of predictability and/or responsiveness of their youth (Van Ijzendoorn et al., 2007).
In addition to the parental and familial factors that may be associated with maltreatment of youth with intellectual disabilities, research suggests that youth with intellectual disabilities may be more likely to experience specific types of maltreatment (Strickler, 2001). Most notably, research suggests that women and girls with intellectual disabilities are much more likely to be sexually abused than are men and boys with intellectual disabilities as well as at higher risk for sexual abuse than are women and girls in the general population (Sobsey, Randall, & Parilla, 1997). Further, boys with intellectual disabilities are at higher risk for physical abuse and neglect than are girls with intellectual disabilities (Shannon & Agorastou, 2006; Sobsey et al., 1997). Perpetrators of physical or sexual abuse can be either family members or other caregivers (Petersilia, 2000).
Federal Policies Addressing Disability and Child Protection
Concern for youth with intellectual disabilities who are either at risk of child protection services-involvement or living in foster care is evidenced by a series of federal legislative efforts. Since the passage of Temporary Child Care for Handicapped Children and Crisis Nurseries Act of 1986 (Pub. L. 99-401), attention has been paid to the need for targeted respite services for the families of youth with intellectual disabilities. In 1988, the passage of the Abuse Prevention, Adoption and Family Services Act focused attention on foster youth with special needs, although the child protection services-specific definition of special needs extended beyond disability to include older age and/or minority status (Child Abuse Prevention, 1988; Rosenthal, Groze, & Aguilar, 1991). Two years later, with the passage of the Americans With Disabilities Act of 1990, disability became an even broader concern across the United States. Despite this federal-level policy attention, and efforts at giving increased attention to foster youth with disabilities, little is known about child welfare-involved youth with intellectual disabilities and whether they may differ from youth without this diagnosis.
In this study we establish a baseline estimate of the prevalence of youth with intellectual disabilities and document differences in demographic and foster care case characteristics between youth with and without intellectual disabilities who are involved with child welfare systems. This includes assessing whether youth had a history of child protection services involvement, the reasons for removal from the family or caregivers, and the types of placement settings in which they lived after removal. Our findings establish a foundation for further child and family-centered research on the prevention of child maltreatment as well as the needs of this population of foster youth.
This cross-sectional, exploratory study drew on data from the Adoption and Foster Care Reporting System (AFCARS) for foster youth in 46 states, the District of Columbia, and Puerto Rico. AFCARS includes case-level data on all foster youth in the custody of state child protective services either via institutional placement, family foster care, or supervision. We identified a sample of 17,714 youth with intellectual disabilities and a comparison group of 655,536 individuals without intellectual disabilities (Cornell University Family Life Development Center, 2003). We conducted univariate and bivariate analyses, including odds ratios and independent samples t tests, and, where appropriate, analyses by state. Both unadjusted and adjusted odds ratios were derived from logistic regression analysis. We used age and gender-adjusting given existing knowledge about the impact of age and/or gender on foster care-related characteristics (Guterman & Taylor, 2005). In certain analyses, as noted, odds ratios were adjusted for the presence of either a comorbid disability or medical condition.
Youth included in the sample were categorized as having a clinical diagnosis of mental retardation as documented in AFCARS, referred hereafter as intellectual disability, In this data file, mental retardation was defined as “significantly sub-average general cognitive and motor functioning existing concurrently with deficits in adaptive behavior manifested during the developmental period that adversely affect a child's/youth's socialization and learning” (Adoption and Foster Care, 2007, p. 3). Further, AFCARS included youth in the category if they had a clinically validated diagnosis of Down syndrome, borderline intellectual functioning, hydrocephalus, microcephaly, or mental retardation (mild, moderate, severe, profound), although individual counts of these conditions were not accessible given the way in which the data were reported in AFCARS. Whereas AFCARS does allow for the identification of youth with a “pending” diagnosis of intellectual disability, these youth (n = 546) were excluded from the study, suggesting that prevalence of intellectual disability reported herein is likely an undercount. The notation of having one of the above described diagnoses originally occurs when the “street-level” child welfare caseworker makes such a note in his or her state's case management data system. This notation is supposed to be made once documentation of the condition is obtained from a medical doctor or other appropriate source (e.g., an Individual Education Plan or neurological report). Each state reports data on the youth in their care to the federal government on an annual basis for inclusion in the AFCARS data file (Administration for Children & Families, 2007).
We examined two sets of variables: demographic and foster care case characteristics. Demographic characteristics measured in the study were age, gender, race, and Hispanic/Latino/a ethnicity. Other comorbid disabilities (e.g., emotional disturbance, physical impairment, or a combined variable for visual/hearing impairment) and “other medical conditions” (including, for example, acquired immune deficiency syndrome, diabetes, and epilepsy) were also measured. The diagnostic conditions included in each of these categories are listed in detail by the Administration for Children and Families (Administration for Children and Families, 2007; Adoption and Foster Care Analysis, 2007).
Foster care case characteristics included two groupings of variables: history of child protection services involvement and placement settings. Variables measuring history of child protection services involvement were lifetime number of removals, age at first removal episode, and years since both the first (if any) and current removal episodes. In addition, we assessed reasons for the current removal episode (nonmutually exclusive categories) and the most recent removal manner (i.e., whether it was voluntary or court-ordered), years since a termination of parental rights petition (known in the child welfare vernacular as a TPR) was finalized, history of any previous adoptions, and age at that adoption.
Variables measuring the foster care placement setting of youth living in foster care noted the placement type (e.g., items) as of the report date. These variables also revealed the number of placement settings during the child's current removal episode. There were eight placement types. The definitions that follow are all from the Adoption and Foster Care Analysis (2007) data documentation.
Youth could be placed in pre-adoptive homes, which are defined as “a home in which the family intends to adopt the child. The family may or may not be receiving a foster care payment or an adoption subsidy on behalf of the child” (p. 46).
They could be placed in foster family homes consisting of kin, defined as “a licensed or unlicensed home of the child's relatives regarded by the state as a foster care living arrangement for the child” (p. 46).
They could be placed in non-kin foster family homes, defined as “a licensed foster family home regarded by the state as a foster care living arrangement” (p. 46). For youth living in family foster care settings, kinship status and amount of foster care subsidy received by foster parents are also disclosed.
Youth could be placed in group homes, defined as “a licensed or approved home providing 24-hour care for youth in a small group setting that generally has from seven to twelve youth” (p. 46).
They could be placed in institutions, defined as “a child care facility operated by a public or private agency and providing 24-hour care and/or treatment for youth who require separation from their own homes and group living experience. These facilities may include child care institutions; residential treatment facilities; maternity homes; etc.” (p. 46).
Youth could be placed in supervised independent living settings, defined as “an alternative traditional living arrangement where the child is under the supervision of the agency but without 24-hour adult supervision, is receiving financial support from the child welfare agency, and is in a setting which provides the opportunity for increased responsibility for self care” (p. 46).
They could be categorized as a runaway, a situation in which any given child has run away from any of the above types of foster care settings, and his or her whereabouts are unknown.
Youth could be at home on a trial home visit, in which their original home (from which the removal by child protection services occurred) is the setting. Specifically, documentation notes that this setting is indicated when “the child has been in a foster care placement but, under state agency supervision, has been returned to the principal caretaker for a limited and specified period of time” (p. 46).
Prevalence and Characteristics of Youth With Intellectual Disabilities
Youth with intellectual disabilities constituted 2.6% of the entire foster care population represented in AFCARS. With respect to base demographics, youth with intellectual disabilities were, on average, 2 years older than their counterparts (11 years [SD = 5] versus 9 years [SD = 6]), t = 4.55, p < .01, and were more likely to be male. Youth with intellectual disabilities aged 12 to 19 years constituted half (50.2%) of the sample, with latency-aged youth constituting 25.6%; 0- to 3-year-olds, 11.8%; and 4- to 6- year-olds, 10.9%. As can be seen from Table 1, findings related to race and ethnicity suggest that the sample was slightly more likely to be characterized as African American, youth with intellectual disabilities are known to have a higher likelihood of additional comorbidities and/or special health care needs (Horwitz, Kerker, Owens, & Zigler, 2000). In this sample the presence of comorbid disabilities or medical conditions followed this pattern, with the odds of having these conditions at between 4 and 20 times that of the comparison group (see Table 2).
Looking at whether foster youth had a history of child protection services involvement, we found that 76.3% of all foster youth with intellectual disabilities experienced their first removal episode in 1999, a rate comparable to their counterparts (79.3%). Foster youth with intellectual disabilities had only very slightly higher mean numbers of lifetime removals (1.4 vs. 1.3, respectively), t = 6.4, p < .001, and only a very slightly higher age at first removal than their counterparts in the comparison group (7.1 vs. 6.9, respectively), t = 5.59, p < .001). On average, they had two more years since their first removal (3 vs. 2, respectively), t = 7.30, p < .001, and had lived in foster care for 1.5 years longer than their counterparts during the current removal episode (3 vs. 1.5, respectively), t = 7.62, p < .001. Foster youth with intellectual disabilities were more likely to have been adopted previously (2.5% vs. 1.8%, respectively), OR = 1.37, p < .001, suggesting another proxy measure of previous child protection services involvement.
Whether or not youth have had prior involvement with child protection services systems, the manner in which a child is removed from their family as a result of suspected abuse or neglect may be an indicator of the potential severity of the trauma experienced. Although a majority of youth with intellectual disabilities were placed with child protection services voluntarily during their most recent or current removal episode, this removal type was less likely for youth without intellectual disabilities (88.4% vs. 91.6%, respectively). Approximately 10% of all youth experienced court-ordered removals, although youth with intellectual disabilities were more likely to be removed this way (11.6% vs. 8.4%, respectively), OR = 1.34, p < .001. An examination of the reasons for removal suggests a series of important differences between the sample and comparison group.
Removal-Related Characteristics and Comparisons
With respect to reasons for a child's removal during the current foster care episode, neglect emerged as the primary reason at just under 50% versus 60% for the comparison group (see Table 3). Our findings also suggest types of removal that may be less common among youth with intellectual disabilities; these types included abandonment, parental incarceration, their own behavior problems (including alcohol or drug abuse), or parental drug abuse. No differences were noted between the sample and comparison group with respect to removals initiated due to parental inability to cope or parental alcohol abuse. Youth in our sample were more likely than those in the comparison group to be removed due to relinquishment, parental death, their disability, sexual abuse, or physical abuse.
Given existing research that is suggestive of gender differences in sexual and physical abuse among youth with intellectual disabilities, we conducted three sets of analyses within the populations of foster youth explored herein. Looking just at foster youth with intellectual disabilities, we found that girls are two times more likely to experience removal due to sexual abuse than are boys, OR = 2.09, p < .001, but the data did not suggest gender differences in the likelihood of physical abuse. In order to assess for between-group gender differences, we examined the odds of removal due to sexual abuse among girls and found that girls with intellectual disabilities were 58% more likely to be removed for this reason, OR = 1.58, p < .001. In order to assess for between-group gender differences, looking just at boys, we examined the odds of removal due to physical abuse, finding that boys with intellectual disabilities were 15% more likely to be removed for this reason, OR = 1.15, p < .001.
Placement-Related Characteristics and Comparisons
Once youth with intellectual disabilities enter foster care, the placement setting itself can have a significant impact on their well-being during a time of potentially traumatic transition from their regular schedules, habits, and circles of support (see Table 4). Per the Adoption and Safe Families Act of 1997, placement decisions are based on the least restrictive setting possible that will meet a child's safety needs, promote placement stability, and support possible family reunification.
Despite these foster care policy-related goals, foster youth with intellectual disabilities experienced more placement instability (measured as number of settings) than did their counterparts (4 vs. 3, respectively), t = 36.2, p < .001, and were more likely to be placed out-of-state (7.4% vs. 5.2%, respectively), OR = 1.4, p < .001. Although the ideal goal for most foster youth is family reunification, youth with intellectual disabilities were 49% less likely to be placed with family in a trial home visit. Although kinship foster care is often regarded as a good alternative, youth with intellectual disabilities were 61% less likely than the comparison group to live in this type of setting. Conversely, youth with intellectual disabilities were almost two times more likely to be living in a non-kinship foster family setting or a pre-adoptive foster home, although due to limitations in the AFCARS data, it is unclear whether a pre-adoptive home could consist of kin. In considering the placement received by foster youth with intellectual disabilities, we examined the amount of foster care payments received by family foster care providers with and without foster youth with intellectual disabilities by state. In a majority of states foster families received either a larger or equivalent subsidy when caring for a child with intellectual disabilities. Foster parents caring for youth with intellectual disabilities versus those caring for youth without intellectual disabilities in Kansas ($671 vs. $1,694, respectively), t = 1.65 p < .005, and Oklahoma ($155 vs. $207, respectively), t = 4.07, p < .001, appeared to receive less than other foster parents, with both South Carolina and Puerto Rico trending in this direction, although these findings may relate to alternative state-specific policies allowing for funds from other sources.
With respect to congregate care settings, youth with intellectual disabilities were twice as likely to live in an institution, but were 30% less likely to live in community-based group homes. Although we could not reach this level of specificity with these data, exploratory analyses of youth removed on a voluntary basis suggest that youth with intellectual disabilities were more likely to live in an institutional setting (age, gender, co-morbid disability-adjusted OR = 1.27), p < .001. Although a small percentage of youth with intellectual disabilities were reported to be living independently, they were less likely to live in this type of placement than were their counterparts. On average, youth with intellectual disabilities residing in independent living settings were age 18 (SD = 2), a year-older than their counterparts, t = 5.72, p < .001. Further, on average, these youth had experienced at least 2 more foster care years than their counterparts (5 vs. 3, respectively), t = 10.8, p < .001.
The data reported upon in this article provide a helpful set of baseline information about child welfare-involved youth with intellectual disabilities. Foster youth with intellectual disabilities exhibit distinct characteristics that can inform child protection and disability policymakers and practitioners about how this population of youth enters child welfare systems and the type of care they receive during a foster care episode.
Prevalence of intellectual disability
Previous research on general prevalence rates of intellectual disability among youth has varied. For example, Lee et al. (2001) conducted age-specific assessments of the prevalence of mental retardation for two age groups (0 to 5 and 6 to 17 years). Their results suggest that prevalence is estimated to be 4.5% among 0- to 5-year-olds and 8.1% among 6- to 17-year-olds (Lee et al., 2001). We conducted similar, age-specific analyses of the prevalence of confirmed diagnoses of intellectual disabilities among foster youth and derived an estimate that 1.6% of 0- to 5-year-olds and 3.1% of 6- to 17-year-olds had this diagnosis. These findings suggest that the prevalence of intellectual disability among foster youth may be lower than that found in the general population, but it might also be explained by definitional differences used in both the present and the Lee et al. (2001) studies. Especially concerning is the likelihood that substantiated cases of any type of child maltreatment may represent the “tip of the iceberg” with regard to actual prevalence. These data also inform our nascent understanding of the potential for greater risks experienced by youth with intellectual disability as compared to those without such disabilities. However, given the challenges to the definitions used in AFCARS, the child welfare system might consider bringing their definition of intellectual disability in line with approaches used in the disability policy and practice communities in order to garner more accurate estimates for future planning.
Demographic differences by disability status
With respect to the demographics of foster youth with intellectual disabilities, these data suggest the presence of an all too familiar demographic structure from both disability and child protection services perspectives. That foster youth with intellectual disabilities were slightly older than their counterparts suggests that they may have more memory of life in foster care, resulting in increased potential stigma. Whether older age is a risk factor for child maltreatment still remains unclear. With respect to findings related to gender, youth with intellectual disabilities were more likely to be male, which could relate to diagnostic patterns for intellectual disabilities, but could also relate to the slightly higher prevalence of boys in child protection services (Leonard & Wen, 2002).
In light of established concern about the overdiagnosis of intellectual disability among African-American/Black youth, especially boys, our findings led us to conduct two further assessments (Yeargin-Allsop, Murphy, Oakley & Sykes, 1992). First, looking only at youth categorized as African American/Black, youth with intellectual disabilities were more likely to be boys, unadjusted OR = 1.37, p < .001. Second, looking only at boys, youth with intellectual disabilities were more likely to be Black, unadjusted OR = 1.04, p ≤ .05. Although our findings suggest possible support for existing research, these analyses may be confounded by the well-documented disproportionality of African-American/Black youth who are living in child protection services settings. This finding fits with existing knowledge about racial disproportionality in child protection services systems, but it may also add to our knowledge of multiple oppressions, for example, the intersection of race and disability (McRoy, 2005). Whether African-American/Black youth with disabilities are more likely to be tracked into child protection services as a result of their race, their disability or the combined impact of the two warrants further exploration.
The intellectual disability service sector
Existing literature suggests that youth with intellectual disabilities have long been known to be at increased risk for maltreatment, with the need for specialized respite services also well-documented. Yet, our results suggest the need for preventative social services that are responsive to the needs of people with intellectual disabilities as well as their families—especially in areas where removal reasons of child welfare involvement have higher odds of occurring. Of particular concern is the finding that although youth with intellectual disabilities were equally likely to have been removed due to parental inability to cope, they were almost seven times more likely to have been removed as a result of their disability. A case record review targeting families or caregivers whose youth were removed for this reason might reveal whether disability support services had been in place and where those services might have been lacking. Existing literature on coping with a non-normative parenting challenge with youth who have intellectual disabilities suggests the potential for increased rates of depression and/or the need for respite care, for example, both of which could likely play a role in preventing child maltreatment and entry into child protection services systems. Given that this is known, an examination of the ways in which existing family supports may not meet all of the needs of families and caregivers, is warranted. However, given that another body of existing literature suggests that parenting a child with a disability can be a transformative and community-building-oriented experience—especially when families are part of a larger support network—this suggests a direction that family support services may want to head in, namely, a strengths-based direction (Greenberg, Seltzer, Krauss, & Kim, 1997; Hong, Seltzer, & Krauss, 2001). Although the latter studies appear to be more generalizable to an engaged group of parents with strong circles of support who are connected to the research and/or social service community, the development of mechanisms for supporting families at risk who may not be as inclined to access such services is of utmost importance. If prevention-oriented services offered by the disability service could create positive experiences and connections of this nature, risk of maltreatment might be reduced as would risk of out-of-home placement.
Second, our data suggest that youth with intellectual disabilities have had more years of child protection services contact (since their first removal episode, if any) than have their counterparts. The impact of a series of intersecting, cumulative risk factors related to disability, child protection services, and/or foster care involvement may cause youth with intellectual disabilities to be at higher risk for negative outcomes for several reasons, which may include the trauma of entering foster care (once or repeatedly), living away from familiar circles of support and life patterns, the social stigma associated with living in foster care, and documented challenges regarding collaboration between disability and child protection services agencies.
Third, data related to the ramifications of previous adoption disruption for foster youth with intellectual disabilities needs to be collected. Although only a small number of youth had previously been adopted, our finding that youth with intellectual disabilities were 1.4 times more likely to have experienced a disrupted adoption supports existing research (Festinger, 2005). Most of these youth were between the ages of 6 and 12 years at the time of their previous adoption. Although adoption disruption can result from a variety of potentially interrelated causes, ranging from a poor fit to a change in the adoptive family's circumstances, it may have an especially problematic impact on youth with intellectual disabilities vis-à-vis their ability to form healthy attachments with their caretakers (Festinger, 2005). Previously adopted foster youth with intellectual disabilities may be at increased risk of poor outcomes both in foster care and in more permanent long-term placements.
Fourth, findings related to the ways in which youth with intellectual disabilities are both removed, and the reasons for those removals, have implications for disability service providers vis-à-vis removal prevention efforts. With respect to reasons for current removal, although a minority of all youth were removed from family members pursuant to a court order, this was more likely for youth with intellectual disabilities, possibly indicating a more traumatic removal. Given the literature on parental stress in families with youth who have intellectual disabilities, our findings related to lower rates of voluntary placement were surprising. However, we also wondered about the use of voluntary child protection services placement as a mechanism for accessing residential treatment centers that local school systems might not support due to tax-based funding concerns.
Findings related to the reasons why youth with intellectual disabilities were removed from their families both mirror standard prevalence estimates for the basic types of child maltreatment. For example, a majority of child protection services cases tend to be categorized as neglect (61% of cases in 2004) and physical abuse (19% in 2004) (Guterman & Taylor, 2005). In our examination of the reasons that youth were removed from their families, those with intellectual disabilities were almost 20% more likely to be removed as a result of parental neglect, also the most common reason for removal in the general population (Van Ijzendoorn et al., 2007).
Youth with intellectual disabilities appear to be overrepresented in five removal reason types. First, removal due to relinquishment was more common, which could relate to parental inability to cope with the needs of any given child, although this was also a separate AFCARS category. Second, removal due to parental death was more common. Much attention has been paid to the aging population of adults with intellectual disabilities vis-à-vis the need for long-term planning, and such planning may also be appropriate for youth with intellectual disabilities whose parents or caregivers are either ill or of advanced age (e.g., grandparent caregivers). Third, youth with intellectual disabilities were more likely to have been removed as a result of what AFCARS termed the child's disability. Fourth, especially alarming is our finding that youth with intellectual disabilities are at increased risk of sexual and physical abuse, which supports existing research. However, our findings provided mixed support for existing research on the role of gender in increased risk for sexual and physical abuse. Specifically, although girls with intellectual disabilities were more likely to experience sexual abuse than were boys with intellectual disability, no gender differences were noted with respect to physical abuse.
Fifth, we did not expect to find that populations of concern living in child welfare systems suggest the presence of substance use disorders among some youth with intellectual disabilities. Although just over 1% of youth with intellectual disabilities were removed from their families as a result of their own alcohol or drug abuse, this suggests the presence of a very vulnerable population for whom it is known that access to substance use disorder treatment is a documented challenge (Slayter, 2010a, 2010b; Slayter & Steenrod, 2009). This suggests that disability service agencies need to develop basic competencies in screening for substance use disorders and in providing prevention-related guidance to youth with intellectual disabilities in order to support them in their decision-making around alcohol and drug use.
The child welfare system: First, study findings suggest that questions about whether there is adequate public accommodation of disability in child welfare systems need answering. Higher rates of multiple and comorbid disabilities in addition to a diagnosis of intellectual disability were not particularly surprising, but do raise questions about whether child protection services caseworkers and foster care providers are able to accommodate youth's needs vis-à-vis public accommodation requirements under the Americans With Disabilities Act (ADA). For example, existing research suggests that foster youth with individual education plans (IEPs) charted under the guise of the Individuals With Disabilities Education Act (IDEA) may not receive adequate care while in foster care (Geenen & Powers, 2006). Foster care social workers and providers are not necessarily trained in accessing and/or advocating for services within either the early intervention or school-based settings. Foster care systems may also not have enough specialized and/or therapeutic foster homes available. Increased rates of comorbidity may also have significant implications for youth's potential to receive appropriate support, care, and services while living in foster care given documented disconnects between disability and child welfare systems (Lightfoot & LaLiberte, 2006).
Second, possible disparities in the use of institutional placements while in foster care are also of concern with respect to public accommodation guidelines set out in the ADA. Our findings on placement type differences suggest that youth with intellectual disabilities are almost twice as likely to live in an institutional setting, constituting almost one fifth of all youth with intellectual disabilities as opposed to 10% of the comparison group. This finding suggests the presence of community inclusion disparities for youth with intellectual disabilities. We conducted a post-hoc analysis to assess the odds of an institutional placement for youth with intellectual disabilities while controlling for the presence of any comorbid disability as well as age and gender. Although the previous findings suggest that youth with intellectual disabilities were 1.55 times more likely to live in an institution, the new odds ratio was similar in direction and strength, at 1.32, p < .001. This analysis suggests the need for further, in-depth exploration of whether foster youth with intellectual disabilities are more likely to be placed in institutional care or are in or are in need of a higher level of care, which may not be available in community-based settings due to funding. Concern for the outcomes of institutional life for a child with intellectual disabilities who may be separated from his or her previous and/or primary circle of support should be paramount.
Third, findings related to the potential lack of consistent familial/caretaker relationships for youth with intellectual disabilities while in foster care were also of concern. Consistency in connection to caregivers is especially important for youth with intellectual disabilities given potential difficulties related to attachment (Cicchetti & Toth, 2005). Therefore, that foster youth with intellectual disabilities were less likely to have family reunification as a goal or to live in a kinship foster care placement and were more likely to have had their parental rights terminated are particular concerns. Given that youth with intellectual disabilities were less likely to live with kin, a reconsideration of how and whether kinship care can and should be adopted for this population of foster youth is necessary. This issue may be of even greater importance for youth with previous adoption histories. Especially concerning was the finding that youth with intellectual disabilities were less likely to leave foster care as a result of family reunification or living with another family member. These findings have implications for extending circles of support beyond immediate family members while still in the community, possibly by targeting extended family members for the provision of respite services to families at risk of child protection services involvement and/or a removal.
Foster youth with intellectual disabilities evidence distinct demographic and foster care case-related characteristics when compared to youth without intellectual disabilities. These findings inform child protection services and child welfare systems across the United States about areas in need of attention for prevention and service delivery improvements that will foster intersystem collaboration needed to support families in preventing removal, providing appropriate community-based supports while in foster care, and promoting higher rates of family reunification. Although all youth in foster care are vulnerable, findings suggest reasons to re-consider the special vulnerabilities and service needs of youth with intellectual disabilities to prevent removal, improve foster care outcomes, and promote community inclusion.
AFCARS data file
In this study we relied on administrative data as our data source, knowing that these data are derived for administrative versus research purposes. Although the potential challenges to the reliability of the AFCARS data file are noted by a range of researchers for different reasons (e.g., state by state differences in reporting and validity of diagnostic conditions, as discussed in our Method section), a number of national efforts have been initiated in order to address this concern. In 2003, the Administration for Youth and Families began working to improve the reliability of the data file through financial support for enhancing each state's statewide automated child welfare information systems, which is referred to as “SACWIS” (Government Accounting Office, 2003). In 2009, the Youths' Bureau developed the AFCARS Assessment Review (AAR) process, which specifically targets the improvement of both the reliability and validity of these data. This process is described by the Children's Bureau (2009) as being developed
to evaluate the accuracy and reliability of the foster care and adoption data. The State's information system is assessed against the AFCARS requirements in the Federal regulation, policy issuances, and the AFCARS Technical Bulletins. The AAR evaluates a State's information system's capability to accurately collect, extract, and transmit the AFCARS data to the Children's Bureau. A second focus of the AAR is to assess timeliness and accuracy of data entry by caseworkers…. The Guide can also be used by States as a self-assessment tool. The appendices contain the general requirements and data element standards that are required in order for a State's AFCARS data to be compliant and are used during an AAR to evaluate the State.
Recommendations for Future Research
The baseline data reported here leave many questions. Three areas of particular importance for future research are identified. First, because of the apparent disparity in institutional settings for youth with intellectual disabilities, reasons for such differences should be explored, especially given the general trend away from the use of institutional settings for all foster youth. Second, given the preference of placing youth who are removed from family or caregivers with kin, understanding more about the placement process (and potential barriers to such placements) is needed. Third, in states where relationships exist between child welfare and disability service systems, considerations of what does and does not work should be examined at both the state and community level with a particular focus on the preparedness of caseworkers in both sectors to interact with the other system and potentially across case practice paradigms.
The authors thank the National Data Archive on Child Abuse and Neglect at Cornell University for providing these data and offering technical assistance during data analysis.
Elspeth Slayter, PhD (e-mail: email@example.com), Assistant Professor, and Cheryl Springer, PhD, Director, School of Social Work, Salem State University, Salem, MA 01970.
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