Child welfare involvement on youth with disabilities in the U.S.: Macro-level responses

There is a general sense that youth with disabilities are over-represented in the child welfare system in the United States.  What do we really know about this topic in general-  and what do we know about  “macro level” or governmental approaches to the support of this population? As Slayter (2016) writes, “youth with disabilities are known to be at increased risk of maltreatment in the form of abuse or neglect (Hughes & Rycus, 1998; Johnson-Reid, Drake, Kim, Porterfield & Han, 2004; Smith, 2002; Sobsey, 1994; Sullivan & Knutson, 2000; Vig & Kaminer, 2002; Westat, Inc., 1993). Once maltreatment is substantiated by child welfare officials, youth may be placed in the child welfare system or may remain with their families under child welfare supervision.  National data reporting on the reasons why youth with disabilities have come to the attention of child welfare authorities are also limited (Lightfoot, Hill, LaLiberte, 2011; Slayter & Springer, 2011). Existing research suggests that youth with disabilities are most likely to experience neglect (Sullivan & Knutson, 2000), physical neglect, medical neglect, with one study identifying a twofold increase in the likelihood of experiencing emotional neglect (Crosse, Kaye & Ratnofsky, 1992).  Further, Crosse, et al. found that youth with disabilities were more likely to experience physical abuse, sexual abuse and emotional abuse than their counterparts without disabilities.  This finding was supported by Sullivan & Knutson’s (2000) work on a sample of youth from the BoysTown program, which suggested higher likelihoods of physical abuse, sexual abuse and emotional abuse.”

While this knowledge is apparent, several smaller studies shed light on the problem, using different disability definitions.  Slayter (2016) reviews the literature, as follows “in 1990, a study of thirty-three state child welfare agencies reported that 20 percent of youth in foster care had a range of disabilities as identified by the agency (Hill, Hayden, Lakin, Menke & Amado, 1990). In 1991, Westat produced an evaluation of Title IV-E Foster Care Independent Living and found that 47 percent of youth aging out of care were “handicapped.” In 1992, an Illinois-based study reported identifying 29 percent of the school-aged population in foster care receiving special education services (Goerge, Voorhis, Grant, Casey & Robinson, 1992). Also in 1992, Crosse, Kaye & Ratnofsky, (1992) conducted research with 35 child welfare agencies and determined that 14 percent of foster youth had a suspected or diagnosed disability as defined by the agency. In 2000, a population-based study of students in one city revealed that 22 percent of all maltreated youth had a disability (Sullivan & Knutson, 2000).  In a study of 13 to 21 year old foster children in a large urban school district in Oregon, 44 percent were found to receive special education services (Geenen & Powers, 2006).  In 2007, a meta analysis found that youth in foster care were disproportionally represented in the special education rolls (Scherr, 2007) at a rate of between 27 and 35 percent. Finally, in a Minnesota-based study, the prevalence of disability (measured as receipt of special education services) among child welfare-involved youth suggested that 22 percent of youth aged 0-18 had a disability, and when considering only those aged 5 through 18, 28 percent were found to have a disability (Lightfoot, Hill & Laliberte, 2011).  Taken together, these data suggest that the prevalence of disability among child welfare-involved youth ranges from 14-47 percent of the population.

We also know little about the experience of youth with disabilities living in the child welfare system.  Slayter (2016) notes that “data on the experience of youth with disabilities in the child welfare system are also limited with respect to information about the nature of permanency goals (Bonner, Crow & Hensley, 1997; Slayter & Springer, 2011). Every youth involved in the child welfare system has a permanency planning goal per the Adoption and Safe Families Act of 1997.  When a youth first becomes known to child welfare workers, the first focus is on “supporting and stabilizing a family to prevent an initial placement” if at all possible (Children’s Bureau, 2015). Ideally, family reunification is a preferred outcome for those in foster care. In situations in which youth are removed from their families for safety reasons, permanency planning efforts focus on the ideal of sending them home or placing them with another permanent family such as relatives, adoptive families who have obtained legal custody, or guardians. According to the Children’s Bureau, “permanency planning involves decisive, time-limited, goal-oriented activities to maintain children within their families of origin or place them with other permanent families” (Children’s Bureau, 2015).  Several studies have explored permanency-related data, finding that youth with disabilities are less likely to achieve family reunification (Snowden, Leon &Sieracki, 2008; Courtney & Wong, 1996; Akin, 2011) and more likely to be adopted (Akin, 2011).  Existing research suggests there is a higher likelihood of out-of-home placement for youth with disabilities (between OR=1.87-2.16 depending on age range (Lightfoot, Hill & LaLiberte, 2011).  Very little information is available about patterns of child welfare placements or case outcomes for youth with disabilities (Bonner, Crow & Hensley, 1997; Slayter & Springer, 2011). The National Council on Disability (2008) found that youth with disabilities are more likely to experience placement in congregate care settings versus family foster care settings. In a study focused on the nature of placements for older foster youth with disabilities, data suggest that this population was more likely to be placed in specialized settings and less likely to be placed in kinship care or non-relative foster placements – with the same findings heightened for youth with developmental disabilities (Schmidt, Cunningham, Dalton, Powers, Geenen, Orozco, 2013). Further, these youths’ characterizations of the restrictiveness of their placements suggested that youth with disabilities reported higher rates of restrictiveness of communication, movement restrictiveness and access to the community. Another statewide study focused on youth aged 17+ found that youth with disabilities experienced “higher rates of placement instability and longer stays in placement,” suggesting that they are “at higher risk for emotional, educational, mental health, and behavioral problems” (Hill, 2012, 1422).”

Understanding more about how maltreatment and child welfare involvement may impact the lives of youth with disabilities is vital as the trauma they may have experienced due to maltreatment, investigation of that maltreatment and/or their removal from families. As Slayter (2016) discusses, “these potential traumas, coupled with the impact of living as a foster youth, can be detrimental in both the short and long-term (Strickler, 2001; Weaver, Keller & Loyek, 2005).  A lack of a sense of belonging, disrupted family identity, attachment disorders, emotional distress and the stigma of being a foster youth 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 at circa age eighteen (Renne & Mallon, 2005).  These negative experiences may work together to create cumulative risk for negative outcomes including mental illness, lower levels of education and limited employment (Pecora, Kessler, O’Brien, White, Hiripi, English, White & Herrick, 2007). Given that youth with disabilities are at risk for all of the same types of risk factors for child abuse and neglect that youth without disabilities may face. It is possible that foster youth with disabilities are especially vulnerable to the potential socioeconomic and psychological stressors associated with foster care and that these stressors may impede community inclusion. Foster placement instability (i.e. a situation in which foster youth are moved from foster home to foster home for clinical or administrative reasons), a noted concern for all foster youth, is an especially important factor to consider as it relates to the quality of life of foster youth with disabilities. Placement instability can negatively impact the receipt of school-based services under an Individual Education Plan (D’Andrade, 2005; Schormans, Coniega & Renwick, 2006; Geenen & Powers, 2006).”

What policy approaches have  been taken to support this population?

In the United States, a series of Federal laws have addressed youth with disabilities who are either at risk of child welfare involvement or who are living in foster care.  Slayter (2016) provides a review of these laws: “the passage of Children’s Justice and Assistance Act of 1986 had ramifications for youth with disabilities.  In general, this act was focused on addressing the handling of child abuse cases so as to limit additional trauma to the child victim; the investigation and prosecution of child abuse cases.  For states to qualify for financial assistance under this act, they needed to establish interdisciplinary task force on children’s justice and adopt the recommendations of that task force in three programmatic areas, one of which led to supports for youth with disabilities.  Specifically, they needed to consider recommendations related to experimental, model, and demonstration programs for testing innovative approaches and techniques for enhancing the effectiveness of judicial or administrative action in child abuse cases.  Also in 1986, the passage of the Temporary Child Care for Handicapped Children and Crisis Nurseries Act led to the availability of financial support for targeted respite services for the families of youth with intellectual disabilities. In 1988, the passage of the Child Abuse Prevention, Adoption and Family Services Act of 1988 focused attention on foster youth with ‘special needs’ (Rosenthal, Groze & Aguilar, 1991). In this act, ‘special needs’ were defined in the context of situations in which it was reasonable to conclude that a youth could be placed with adoptive parents without financial assistance in the form of adoption subsidies and/or medical assistance. Specifically, special needs could include ethnic background, age and membership in a sibling group. Additionally, the term could also apply to a youth with a medical condition or a physical, mental or emotional disability.  While this act was not specific to youth with disabilities, it did include the provision for services that could support this specific population of foster youth.”

What community-level approaches have been undertaken to support this population?

In summary, while all youth in foster care may be vulnerable, the special vulnerabilities and service needs of youth with disabilities to prevent removal, improve foster care outcomes and promote community inclusion should be considered by child welfare workers. Especially important is the need for a strengths-based approach to working with youth with disabilities in child welfare settings (Lightfoot, 2014).  As noted by Slayter (2016), “child welfare is usually an involuntary, time-limited intervention that is focused on monitoring with the goal of safety, permanence and well being, disability services are usually voluntary, with a focus on supports needed for a lifetime. Despite discussions about the needs of youth with disabilities in the child welfare system, these two systems do not appear to have a favorable history of collaboration, which may be understood in part as a function of their differences (Hill, 2009).  There is a wide gap between the underlying theoretical and practice approaches in each system, which suggests a need for the development of model collaboration initiatives in unique geographic locations (Lightfoot, 2014).  In day-to-day casework, communication between the “lead” caseworker in both the child welfare and the disability systems needs to be established in order to streamline casework planning and implementation.”

At the administrative level, Slayter (2016) discusses how “non-governmental collaboratives might be established as a resource exchange  and cross-training mechanism (Lightfoot, 2014).  One such example exists in Minnesota, where a Disability Child Welfare Collaborative was established in 2011 to bring together practitioners and researchers in the areas of child welfare, disability and education.  Working to raise awareness of the needs of children with disabilities in each system, this group acts as a central resource to all three types of providers, and fosters opportunities for dialogue among providers around how to promote positive outcomes for youth with disabilities (Center for the Advanced Study of Child Welfare, 2016).  A focus of this group’s work is the attention paid to the need for ongoing cross-training between systems in an effort to build disability and child welfare competence – and the sense of who to turn to when unanticipated practice questions arise.  Participants in a collaborative of this nature could become the expert in their own agency, functioning in a consulting capacity with other caseworkers or teachers – who could be encouraged by supervisors to seek help that is specific to the child they are working with (Coyle, 2014).  Child welfare caseworkers faced with a child with a disability on their caseload need to develop basic disability-related competencies.  For example, caseworkers should understand that such children will have a variety of needs even if they are in the same diagnostic category.  For example, a baby who is diagnosed with failure-to-thrive may need early intervention services that can be provided in foster homes, which will result in training for foster parents regarding the child’s care, whereas a child with Down Syndrome might have more specialized medical needs, such as cardiac problems.  Such variation in needs may impact the ways in which child welfare workers work towards exit from foster care, and positive outcomes. Finally, efforts to develop legislative guidelines around the need for compliance with the Foster Care Independence Act (FCIA) of 1999, which requires that when youth are served via the John H. Chafee Foster Care Independence Program funds, transition services must be coordinated with systems and/or programs designed for people with disabilities (Geenen & Powers, 2007).”

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