6 An Overview of Disabled Children and Parents in the Family Policing System
Elspeth Slayter, MSW, MA, PhD
Robyn Powell, JD, MA, PhD
This chapter reviews the involvement in and experiences of disabled people in the family policing system – also referred to as the child welfare or child protection system. In the history of the U.S. family policing system, ableism, racism, and other forms of oppression have impacted many children and families involved in the system. The family policing system has long used disability as a criterion for considering a parent as not fit to parent or not capable of parenting. Disabled children are assumed to be at higher risk of abuse and neglect from their parents and other caregivers. As a result, parents and children with disabilities are disproportionately involved with the family policing system. Despite the overrepresentation of the disability community in the family policing system, social workers are often under-prepared for practice with this population, often lacking basic knowledge about the disability community or the various disability service systems. Consequently, families are often not appropriately supported by family policing systems when disability is present. This chapter provides an overview of the key knowledge social workers need in order to approach practice in a way that respects the disability community’s strengths and capacities. We begin with a review of the historical context leading up to present-day practice in this arena. We then address the prevalence of members of the disability community in the family policing system before examining service trends, cultural elements, and relevant policies. We conclude with the voices of the disability community on their experiences with the family policing system as it relates to policy and practice implications, before presenting case examples for your consideration.
There is a long history of societal intervention in families where disabled children and parents are present. First, we review what is known about how disabled children were viewed by society. Second, we review how the lives of disabled parents have been controlled over time, including how lives differ based on different social identities, such as race, ethnicity, and class.
Negative views of childhood disability are noted across the globe. From early Roman times, disabled children were looked upon as not fully human, and sometimes infants were abandoned to die (Morris, 1986). In the Christian tradition, the bible’s New Testament writes about disability as arising from sin and spiritual deficiency, where parents’ sins cause blindness or other disabilities. However, other parts of the bible reflect favorably upon disabled people (Mackelprang & Salsgiver, 2015). During the Middle Ages, reformers such as Martin Luther suggested that drowning disabled children could be justified as they might be incarnations of the devil (Blanks & Smith, 2009; Munyi, 2012). Munyi’s (2012) analysis of historical accounts of the treatment of disabled children in various parts of Africa in the 19th century reveals a mixed picture. In Benin, at times, disabled children were thought to be protected by supernatural powers, bringing good luck to the community. However, among the Ibo of Nigeria, disabled children were varyingly pampered and totally rejected. In Kenya, children with intellectual disabilities were abandoned in nature so that they could return to ‘their own kind,’ i.e., animals. In the 1800s and 1900s, disabled children, including racial and ethnic minorities, were often part of ‘freak shows’ in the United States and Europe (Braddock and Parish, 2001). We also saw many disabled children of color, especially Black children, in segregated orphanages. Morton (2020) reports
In 1883, 276 of the 353 orphanages across the country excluded black children; 68 institutions, most of them public, admitted a tiny handful; only nine orphanages sheltered black children exclusively. From 1890 to 1933, although the number of orphanages for both white and non-white children increased, the number of racially integrated institutions actually decreased…this prejudicial treatment of black children has been a national phenomenon. (p. 141).
As the 20th century dawned, families with disabled children often kept them at home – often hidden or sometimes sent to an institution due to shame, stigma, and embarrassment. This history of rejection followed disabled children into the 20th century United States. For example, after the rise of the eugenics movement, which lasted into the 20th century, the film The Black Stork (1919) depicts the story of a mother of a disabled baby who was convinced to let the baby die. She did this after imagining that the child would be rejected by society, leading the child into a life of crime (Pernick, 1996). The eugenics movement informed immigration policy as it related to both disabled people and people of non-White races and ethnicities, including disabled Asian children, for example (Shin, 2020). Perhaps most famous is the child euthanasia movement spearheaded in Nazi Germany in the late 1930s (Parent & Shevell, 1998). The German government encouraged parents to institutionalize their babies and toddlers with visible disabilities, who were either starved or killed by medical personnel as part of a euthanasia project that resulted in upwards of 10,000 disabled children losing their lives.
During the 20th century in the United States, parents were increasingly encouraged to institutionalize their children or keep them at home (Mackelprang & Salsgiver, 2015). However, for over a century, research has documented the ills of this mode of care, which include “stunted physical, intellectual, emotional, and social development among children separated from family environments and placed in institutions” (Berens & Nelson, 2015; Human Rights Watch, 2017, 1). Further, regardless of the size of an institution, or how it is described, this type of treatment is defined by certain harmful characteristics as they relate to disabled children, such as separation from families and the wider community; confinement to groups homogeneous in age and disability; depersonalization; overcrowding; instability of caregiver relationships; lack of caregiver responsiveness; repetitive, fixed, daily timetables for sleep, eating, and hygiene routines not tailored to children’s needs and preferences; and sometimes, insufficient material resources (Human Rights Watch, 2017, p. 1).
Scandals such as those seen at Staten Island, New York’s Willowbrook School, involving unacceptable care of institutionalized disabled children led to the community inclusion movement that has shaped the service system we see today (Mackelprang & Salsgiver, 2015). However, if we look at how disabled children of color have been treated vis-a-vis institutionalization, we see that this process has continued. In Morton’s (2020) study of Cleveland, Ohio, for example, we see that both private and public sector institutions have provided segregated care for children of color “always unequally, and sometimes punitively,” (p. 141). At times, Black children were significantly under-represented in orphanage census numbers compared to the general population prevalence in Cleveland. Morton (2020) tracks this process from the early 1900s through the 1960s, in the Willowbrook era:
Private orphanages that initially accepted small numbers of black children barred them during the 1910s, and dependent black children consequently became the responsibility of public agencies, especially after the Great Depression. Orphanages remained racially segregated until the 1960s when political and financial imperatives compelled their integration. Racial inequalities remained, however, illustrated by the disproportionate number of black children in an overcrowded, dangerous public detention facility that became a public scandal and a symbol of a child welfare system that institutionalizes and sustains the city’s racial inequities (p. 141).
This long negative history of institutionalization related to views of disabled children and encouragements to send them away from society, has created a social stigma against having disabled children. Unfortunately, this stigma appears to be paired with a historical record in the literature documenting increased risk for child maltreatment among disabled children in the 20th century and on through today. Disabled children are at least three times more likely to be maltreated than their peers (Jones et al., 2012). Further, disabled children are more likely to be seriously harmed as a result of that maltreatment (Sedlak et al., 2010).
Today, common narratives about parenting disabled children often frame it as a tragic and pitiful experience, with little attention to promoting the notions of dignity and worth (Thomas, 2020). More recently, some parents of disabled children have come together “to talk about their children as a reason for celebration and pride, discuss their experiences of convivial community relations and public interactions, and praise evolving configurations of disability in popular media” (Thomas, 2020, 451). Yet despite this, these parents simultaneously talk about their “painful, convoluted and exhausting experiences with institutions (education, healthcare, welfare) as part of what they believe to be a wider (structural) hostility to disability that forces them into a series of ‘fights’ and ‘battles’ that characterize the experiences of disabled children and their parents’ lives (Thomas, 2020, 451).
The United States has a long and reprehensible history of constraining people with disabilities from living the lives they desire, including implementing policies and practices that hinder people with disabilities from creating and maintaining families (Powell & Stein, 2016). One prominent example is the eugenics movement, which occurred throughout the late 19th and early 20th centuries. Specifically, negative eugenics aimed to restrict procreation by people with disabilities and others considered ‘socially inadequate.’ Based on the idea that these people would produce offspring who would be burdensome to society, more than 30 states legalized compulsory sterilization (Lombardo, 1996; Silver, 2004).
In 1927, involuntary sterilization gained the support of the Supreme Court in the infamous Buck v. Bell decision. Carrie Buck, who was considered ‘feebleminded,’ was raised in a foster home, where she lived until she became pregnant after being raped by a relative of her foster parents (Cohen, 2016). To presumably hide the rape, Carrie was involuntarily institutionalized at the Virginia State Colony for Epileptics and Feebleminded, where her mother was also committed. Carrie’s daughter, Vivian, was adopted by Carrie’s foster family, and Carrie never saw Vivian again. Subsequently, the institution sought to sterilize Carrie per Virginia’s compulsory sterilization statute. Upholding the state’s sterilization statute on the belief that it served “the best interests of the patient and of society,” Justice Oliver Wendell Holmes, Jr. declared, “Three generations of imbeciles are enough” (Buck v. Bell, 1927). Because of these state laws, more than 65,000 Americans, many of whom had disabilities, were people of color, were Indigenous people, or who were poor, were forcibly sterilized by 1970 (Lombardo, 2008).
Negative eugenic ideologies also led to state laws forbidding people with disabilities from marrying. In 1974, a study found that nearly 40 states had laws banning people with disabilities, most commonly those with intellectual or psychiatric disabilities, from marrying (President’s Committee on Mental Retardation, 1974). More recently, a 1997 study found that 33 states still had statutes limiting or restricting people with intellectual or psychiatric disabilities from marrying (Pietrzak, 1997). Even today, laws prohibiting people with disabilities from marrying continue in some states (Waterstone, 2014).
Prevalence of the Disability Community in Family Policing Systems
Data on the extent to which the disability community is represented in the family policing system does exist. These studies draw on medical model approaches to the operationalization of disability, often using case record reviews or secondary data sources to identify disability.
Prevalence of Disabled Children Involved in the Family Policing System:
Disabled children are known to be at increased risk of maltreatment in the form of abuse or neglect (Hughes & Rycus, 1998; Jonson-Reid, Drake, Kim, Porterfield, & Han, 2004; Smith, 2002; Sobsey, 1994; Sullivan & Knutson, 2000; Vig & Kaminer, 2002; Westat, Inc., 1993). Once authorities substantiate maltreatment, disabled children may be placed in the family policing system or may remain with their families under supervision. A recent literature review suggests that depending on the study, between 14-47% of children involved in the family policing system are disabled (Slayter, 2016). Two population-based studies help us obtain a more specific picture of the prevalence (count) of disabled children in the family policing system. A population-based study helps us obtain an estimate of an entire population of people, allowing us to generalize about what the prevalence of this population may look like in other settings.
First, drawing on data from the Adoption and Foster Care Analysis and Reporting System (AFCARS), an annual data collection system that gathers data from each state and territory, we have information about the prevalence of children included in a national sample (Slayter, 2016). Children were categorized as having one of five conditions: intellectual disability, physical disability, visual or hearing disability, emotional disturbance, or another medical condition. About one-third of children in the family policing system in this study aged 0–18 had an officially diagnosed disability. This means almost a third of all children in that system were disabled. On average, this group was four years older than children without disabilities and very slightly more likely to be identified as having a male gender (gender binary was the approach used in this system). With respect to racial and ethnic identifiers, 57% of the disabled population was Caucasian, 32% was Black or African American, 23% was Hispanic/Latinx, 4% was American Indian/Alaskan Native, and almost 2% was Asian/Pacific Islander. Statistical testing suggested only slight differences between children with and without disabilities. Children with disabilities were 11% and 27% less likely to be categorized as American Indian/Alaskan Native and Caucasian, respectively, than were children without disabilities. Both groups were equally likely to be African American/Black and Asian/Pacific Islander but were 1.27 times more likely to be identified as Hispanic/Latinx (Slayter, 2016). Specific disability prevalence data points were not reported.
Second, Lightfoot, Hill, & Laliberte (2011) conducted a population-based study looking at one state’s family policing system, Minnesota. In this study, over one-fifth of children whose parents or caregivers had substantiated maltreatment cases were labeled as having a disability in administrative records. Further, in the over 5 years old population, more than one-quarter of children, almost 28%, had the disability designation. The study notes that a higher percentage of disabled children were male, at almost 56%, and the gender binary approach was used in this measurement. With respect to race, the majority were Caucasian, at 63%, followed by Black or African American at 22%, American Indian/Alaskan Native at 9%, Asian/Pacific Islander at 1%, and unable to determine at 3%. Disabled children in this population had a range of diagnoses. The most common disability categories were ’emotional disturbance,’ at 37%, followed by ‘intellectual/developmental disabilities’ at 10%, and ‘multiple disabilities’ at 9%.
As both population-based studies found that roughly one-third of the population was disabled, we can consider this a stable estimate of childhood disability in the population of children in foster care (Lightfoot, Hill, & Laliberte, 2011; Slayter, 2016). Disabled children are notably more likely to be abused or neglected than non-disabled children (Sullivan & Knutson, 1998). They are also more likely to be identified as such by the family policing system (Lightfoot, Hill, & LaLiberte, 2011). This high prevalence rate means that all social workers need to develop disability cultural competence to be effective in their practice. This also means that the likelihood, therefore, that children in foster care transitioning from the family policing system into independent living are also members of the disability community, is high (Hill, Lightfoot, & Kimball, 2010). Social workers in this sector can offer bridges to their clients by connecting disabled children with either mentors or community-based disability organizations and disability culture entities (Lightfoot, 2014).
The research literature also reveals some important basic information about the experiences of disabled children involved in the family policing system that is important for social workers to know. Although the prevalence of failed previous adoptions was small, disabled children in foster care were almost three times more likely to have been adopted previously, but then returned to the family policing system, suggesting possible previous family policing system involvement and what is known as an “adoption disruption” (Slayter, 2016). Disabled children were slightly more likely to have entered the system due to a voluntary versus an involuntary placement; although the prevalence of this type of entry was low (4.8% of cases) (Slayter, 2016).
Looking at types of child maltreatment experienced in the Slayter (2016) population-based study as measured by reason for removal from the home, neglect emerged as the primary reason children were removed, followed by ‘parental inability to cope,’ which is defined as a situation in which a parent had a “physical or emotional illness or disabling condition adversely affecting the caretaker’s ability to care for the child” (AFCARS, 2007, 3). The third most common removal reason noted in this study was deemed to be the ‘child’s behavior,’ followed by parental drug abuse, and then physical abuse. However, what is notable is that statistical analyses comparing disabled children with children without disabilities revealed only minor differences between groups on the prevalence of these removal types, suggesting no significant differences in removal types between groups.
Prevalence of Disabled Parents and Caregivers Involved in the Family Policing System
As Lightfoot, Zheng, & DeZelar (2020) note, the literature has focused on the disproportionate rates of involvement in family policing systems among disabled parents although there is “limited evidence that parents with disabilities are more likely to abuse or neglect their children” (583). Additional research on this topic is found in Glaun & Brown (1999) and Oyserman, Mowbray, Meares, et. al. (2000).
Let’s start by looking at the prevalence of disabled parents in the overall U.S. population before looking at their prevalence in the family policing system. Disability advocates contend that disabled parents are prevalent, although documentation is limited. The National Council on Disability (2012) notes that a significant obstacle to ascertaining the number of parents with disabilities as well as their demographic characteristics is the absence of data. While some census data provide estimates of the number of people with disabilities or the number of parents within a given locale, almost no regional or national data consider the combination of these two characteristics (p. 31). Further, the structure of existing child protection data sets makes it difficult to track the prevalence of disabled parents involved in the system. Current estimates of the prevalence of disabled parents of children under 18 range from 5% to approximately 10% of U.S. parents (Li, Parish, Mitra, and Nicholson, 2017; Kaye, 2011a; Sonik, Parish, Mitra, and Nicholson, 2018).
What is troubling is the fact that while just under 10% of parents in the U.S. are disabled, at least one estimate of the number of parents in the U.S. family policing system suggests rates are disproportionately high. Lightfoot and DeZelar (2016) studied the experiences and outcomes of children in foster care removed due to parental disability using the Adoption and Foster Care Reporting System data and found a proxy prevalence rate of 19%. This may be an undercount of the actual prevalence of all disabled parents in the system if some disabilities were hidden or undisclosed and were not involved in the reason for a child’s removal. However, a more recent study by the same authors found a lower prevalence rate looking at disability characteristics of parents among all cases, finding a rate at just under 10%. This study drew on data from the National Child Abuse and Neglect Data System (NCANDS), an annual data collection system that partners with states and territories (Lightfoot, Zheng, & DeZelar, 2021). Researchers included data from states with more robust data reporting, ending up with Georgia, Indiana, Minnesota, Mississippi, New Jersey, South Dakota, Texas, and Utah. They looked at over half a million cases, 27% of which were ‘substantiated’ or approved for further involvement with the family policing system. Within this group of cases, just under 10% had a parent or caregiver who was identified as disabled. However, again, this is likely an undercount of disability because some disabilities are hidden, for example (Lightfoot, Zheng, & DeZelar, 2021).
Given the prevalence of disabled parents in the family policing system, it is clear that child protection workers need to develop disability cultural competence – yet this is often something that falls by the wayside in practice, as is documented in the research literature. This chapter should assist you in becoming more aware as you develop your disability lens for practice!
Experience of Services in the Family Policing System
Understanding a bit about the experiences of disabled children in the family policing system is important for social workers involved in this work. The potential traumas of child maltreatment, coupled with the impact of living in foster care, can be detrimental in both the short and long-term (Strickler, 2001; Weaver, Keller & Loyek, 2006). Lacking a sense of belonging, experiencing a disrupted family identity, having an attachment disorder, living with emotional distress, and facing the stigma of being children in foster care are all documented risk factors for children in foster care (Barahal, Waterman, & Martin, 1981; Mallon & McCartt Hess, 2006). In addition, youth who spend time living in foster care are less likely to establish lifelong connections that will guide them into adulthood upon ‘aging out’ of foster care (Renne & Mallon, 2005). Together, these experiences may create a cumulative risk for future adverse outcomes, including psychiatric disability, lower levels of education, and limited employment (Pecora, O’Brien, & Hiripi, 2007). Given that disabled children are already at risk for these risk factors, it is possible that they are especially vulnerable to potential socioeconomic and psychological stressors and that these stressors may impede community inclusion.
The population-based Lightfoot, Hill, & LaLiberte (2011) study did examine whether children were kept in the home under supervision or placed out of the home. Regardless of age, disabled children were almost two times more likely to be placed outside of their homes than non-disabled children. So, not only does this population face overrepresentation in the family policing system, but once in care, they are also much more likely to be placed out of their parents’ or caregivers’ home. In the Slayter (2016) study, we learned more about the placements that disabled children were most likely to experience while in foster care. A child’s foster care placement type can significantly impact their well-being during what is often a time of traumatic transition from regular schedules, habits, and access to circles of support. Ideally, decisions about a child’s placement should be made based on the ‘least restrictive setting’ to meet safety needs, promote placement stability (i.e., the least amount of moving between foster homes and institutional settings as possible) and support possible family reunification (Adoption and Safe Families Act of 1997).
Despite these foster care policy goals, disabled foster youth experienced more of what is known as ‘placement instability’ (a high number of settings in which the youth resided during their current foster care “episode”) than their non-disabled counterparts – between 4-8 placements as compared to between 2-4 placements (Slayter, 2016). We also know that most disabled youth were not placed with their extended family members in what is known as kinship care, a best practice in child protection work. In fact, they were 40% less likely than non-disabled children to be in this placement setting (Slayter, 2016). And while the ideal goal for most children in foster care is family reunification, disabled children were 37% less likely to be placed with their family in a trial home visit than were non-disabled children (Slayter, 2016). Therefore, it was not surprising that disabled children were almost two times more likely to be in a non-kinship “stranger foster care” setting and/or a pre-adoptive foster home (Slayter, 2016). All of this information suggests that while the ideal practices for children in foster care involve maintaining family contact may be less of a reality for disabled children in foster care. In addition, the literature has noted all of the difficulties that foster parents are challenged with when supporting disabled children. These challenges include difficulty accessing disability care, a dearth of appropriate behavior supports and challenges managing financial strain (Brown & Rodger, 2009).
We also know that while community inclusion is a central policy goal for the disability community, congregate care settings are very prevalent for disabled children in foster care. As you read in Chapter 1 of this textbook, one of the central tenets of empowerment-oriented disability social work practice is community inclusion. Yet, the disability community often has to fight for placement in settings that are community-based and in the case of child welfare, family-oriented. With respect to congregate care settings, disabled children were almost three times more likely than non-disabled children to be living in an institutional setting and were two times more likely to live in community-based group homes (Slayter, 2016). When it came to independent living placements, although only a small percentage of disabled children were reported to be in this setting, they were 10% less likely to live in this type of placement than were their non-disabled counterparts (Slayter, 2016).
Finally, it is essential to consider what is known about the ‘permanency planning goals’ assigned to disabled children compared to non-disabled children while living in foster care. These goals dictate how social workers approach case planning and placement practice, so they are very important. While the top goal for disabled children with and non-disabled children was reunification with their families, disabled youth had this as their goal at a much lower rate (39% vs. 54%) which translated into being 39% less likely to have this placement (after taking into account age and gender) (Slayter, 2016). Disabled children were also twice as likely to have long-term foster care as their goal compared to non-disabled youth. Long-term foster care is not considered an ideal permanent placement for children in foster care.
Outcomes of Child Protection Cases
Child protection case outcomes for disabled children also have consistent patterns that social workers practicing in this sector should be aware of. In Slayter’s (2016) population-based study, 64% of all children in foster care remained in care at the end of the year, with the remaining 36% discharged. Disabled children in foster care were 12% less likely to exit foster care than children without a disability. Among all of the children in foster care remaining in the system, about 20% were the subject children in what are referred to as ‘termination of parental rights’ (TPR) cases — and were technically free to be adopted or otherwise placed. There was a higher rate of completed TPRs among disabled children (about 25%) than children without disabilities (about 15%), leading to disabled children being two times more likely to be the subject child in one of these cases. The top five foster care outcomes for disabled children were reunification with a parent/caregiver (48%), adoption (34%), discharge to guardianship (7%), living with another relative (5%), and transfer to another agency (2%).
Research suggests that disabled children have more years of contact with the family policing system than children without disabilities. The impact of a series of intersecting, cumulative risk factors related both to disability, child protection involvement and/or foster care placement may cause disabled children to be at higher risk for negative outcomes. This may occur for several reasons which may include the trauma of entering foster care (either once or repeatedly), living away from familiar circles of support and life patterns, the social stigma associated with living in care and the effects of documented challenges regarding collaboration between disability and child protection agencies (Slayter, 2016).
While this chapter has addressed disabled children and disabled parents separately, there may be an intersection between disabled parents and disabled children involved in the system. There is a potential compounding bias against families that could really be a factor for increased system involvement. In other words, workers might view disabled children as ‘extra vulnerable’ and in need of protection, and disabled parents might be viewed as not capable. Adding those two notions together could certainly lead to increased system involvement as well as increased exposure bias among mandated reporters.
Challenges with Inter-System Collaboration Between Family Policing and Disability Services
While in care, disabled children and parents alike may not receive optimal care due to the challenges their social workers experience vis-a-vis inter-system collaboration between the family policing and disability service sectors. Disabled children in foster care – especially those facing exit from the system at an older age – are reliant on both systems— systems with very different theoretical approaches to practice. For example, the family policing system is usually an involuntary, time-limited intervention focused on monitoring with the goal of safety, permanence, and well-being. On the contrary, disability services are usually voluntary, focusing on self-determination, independence, and support needed for a lifetime. There is a gap between the underlying theoretical and practice approaches in each sector, suggesting a need to develop collaboration initiatives (Lightfoot, 2014). Unfortunately, despite documented discussions about the needs of disabled children in the family policing system, who are known to be over-represented there, 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).
In day-to-day casework, communication between the ‘lead’ caseworker in both the family policing and the disability systems needs to be established to streamline casework planning. At the administrative level, non-governmental collaboratives might be established as a resource exchange and cross-training mechanism (Lightfoot, 2014). An example of an effort of this nature exists in Minnesota. The Disability Child Welfare Collaborative was established in 2011 to convene practitioners and researchers in the areas of child welfare, disability, and education. They work to raise awareness of the needs of disabled children in each sector, acting as a central resource to all three types of providers. In addition, they foster opportunities for dialogue among providers about how to promote positive outcomes for disabled children (Center for the Advanced Study of Child Welfare, 2016). A central focus of their efforts is continual cross-training between sectors to build disability and child protection competence—and the awareness of who to turn to when unanticipated practice questions arise on either side of the aisle. Participants in a collaborative of this nature 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).
When social workers in this sector participate in collaboratives with disability sector workers, they will develop disability-specific competencies that will allow them to deliver better services to their disabled clients. Social workers working with a disabled child on their caseload need to develop basic disability-related competencies. For example, they should understand that such children will have various 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. In contrast, a child with Down Syndrome might have more specialized medical needs, such as cardiac problems. Variations in needs such as these may impact how social workers work with parents/caregivers, disability service systems, and towards the goal of exit from foster care. Other competencies will relate to the importance of promoting the inclusion of disabled children into everyday community-based life and helping others see such children as valued and unique individuals.
These trainings could also foster the development of social workers’ knowledge of communication techniques and the use of assistive and adaptive technologies (Child Welfare League of America, CWLA, 2012). For example, it will be important for social workers to be aware of different perspectives on how disabled parents engage in the process of parenting and/or the use of adaptive equipment. Social workers can view this video on parenting while blind:
…or see this video on maximizing motherhood with technology:
Supporting Disabled Parents Involved in the Family Policing System
Just as social workers need to develop disability competence for working with disabled children, they also need to do this for their work with disabled parents. This section highlights the importance of embracing parent-centered planning and the supported parenting approach. It also discusses what is known about the evidence on parenting programs for disabled parents.
Lightfoot & LaLiberte (2011) write about the concept of supported parenting (as opposed to the standard of independent parenting) for disabled parents, an extended discussion of which is instructive in this chapter. This is an important concept to consider because when you think about it, “most parents rely on various formal and informal supports for caregiving” in the childrearing phase (Lightfoot & LaLiberte, 2011, p. 1). When discussing parental support, we are thinking about accommodations, strategies, and techniques that will support people to parent their children successfully. While Lightfoot & LaLiberte’s (2011) work was written with parents with intellectual and developmental disabilities in mind, the concept applies to parents with all types of disabilities.
Let’s think about what parental supports can look like in action. We consider these supports to be either technologies, personal assistants, or assistive devices that enhance a person’s capacity to function as an individual parent or couple. Further, these supports will make up for aspects of a parent’s disability that may affect their capacity to care for their child in some way. Finally, use of these supports allows disabled parents to fulfill their duties as parents. Lightfoot & LaLiberte (2011) explain:
Technology can include any adaptive equipment that that may assist an individual in parenting, such as adaptive cribs or child care equipment [see www.disabledparenting.com], cooking/feeding equipment, or a smartphone or a Personal Digital Assistant (PDA) that presents step-by-step guidelines for parenting activities…These types of personal supports could include day care services, respite care, a co-parent or parent mentor, in-home parenting training, money management assistance, homework tutoring, housekeeping, safety planning, or even long-term family foster care. (p. 3)
The use of parental supports assists disabled parents in filling gaps between their competencies as parents and the demands of the family environment. This builds on the concept of individual supports used in disability service settings by broadening the lens to one that includes a family focus.
One approach to supported parenting is parent-centered planning (Lightfoot & DeZelar, 2020). This approach draws from the concept of ‘person-centered planning,’ which is well-known in disability services. This concept is described by Lightfoot & DeZelar (2020) as focused on “develop[ing] a plan for individualized supports through a process that assists people with disabilities and their social networks in planning, by focusing on a person’s strengths and preferences rather than on formal assessments or services available” (p. 2). Parent-centered planning is proposed as a way to support disabled parents, their circles of support, and their children in figuring out how someone can engage in positive parenting with their child/children. This would involve using a range of appropriate parental support mechanisms that are individualized to the situation, along with a personalized care plan drawing on those supports. The wishes and desires of both parents and children are part of the planning process in this model, given age appropriateness. Key to this model is using an experienced and trained facilitator who is knowledgeable about the range of support services available in the community. The facilitator will work with the group to make short- and long-term goals for the parent-centered planning process with attention to how various supports will aid in achieving those goals. The process begins with preparation, moves to scheduling and inviting, leads to the actual parent-centered planning meeting, and ends with the transition phase. The details of these phases are described on this website:
Additional resources on this intervention are also available:
CASCW Practice note: https://cascw.umn.edu/wp-content/uploads/2020/11/PN36-WEB508.pdf
1-hour free online training/CEU: https://cascw.umn.edu/portfolio-items/parent-centered-planning-for-parents-with-disabilities-1-0-hrs/
Intervention Facilitator’s Manual: https://cascw.umn.edu/wp-content/uploads/2022/01/Parent-Centered-Planning-Facilitator-Manual_8.30.21.pdf
While this model has not undergone empirical evaluation, it is noted to have the potential for use in various ways in the family policing and disability services contexts. As expecting parents plan for the birth of their child/children, for example, disability services workers could use this approach to support parents in developing short- and long-term goals in the context of a care plan. The authors of this plan also argue that social workers could use this approach as a form of an alternative response to alleged child maltreatment or perhaps in situations where voluntary services are requested (Lightfoot & DeZelar, 2020). Further, the authors note clearly that parent-centered planning does not stand in for developing formal supports for disabled parents, given the lack of specialty services for many parents within the disability community. For example, there are significant needs for social workers in this sector to build “effective adapted parenting skills training programs, co-housing programs, respite programs, or even the provision of family-focused personal care attendants” (Lightfoot & DeZelar, 2020, p. 4). Rather, it is the goal of parent-centered planning to foster existing informal supports for the parenting effort, akin to what happens in communities that are not disabled, under the principle of interdependence. Key to implementing a supported parenting approach will be the need for social workers to engage in pre-engagement reflective and reflexive practice (see Chapter 2 in this textbook). This is necessary to consider how supports or the idea of supportive parenting may also be influenced by other social identities, such as race, ethnicity, and gender identity, among others.
The Evidence Base for Parenting Education Targeted at the Disability Community
While not every disabled parent needs support or parenting training, social workers need to start by asking disabled parents about their needs. If there are needs, another tool for social workers to consider in case practice with disabled parents may be a referral to a specialized parenting education program. In general, parenting programs are well-established as ways for people to improve their parenting skills, knowledge, and efficacy while also assisting in decreasing their child’s/children’s disruptive behaviors and their own parenting stress (Radley, Grant, Barlow, & Johns, 2021; Kaplan, Solomon, Salzer, & Brusilovskiy, 2014). Unfortunately, all of the specialized curricula we have found are targeted to either parents with intellectual and developmental disabilities or parents with psychiatric disability without attention to other populations within the disability community. For those not working with either of these populations of parents, it is recommended that parenting education curricula work to become accessible to all members of the community through the use of a universal design approach. Also, for social workers running parenting education programs either virtually or in-person, reading and acting on one of these simple guides to website accessibility, accessible social media, meeting accessibility, webinar accessibility or public event accessibility will go a long way to engaging the disability community and making the disability community feel welcome!
Social workers unfamiliar with how disabled parents who are, for example, visually impaired or physically disabled engage in the process of parenting and/or use adaptive equipment might benefit from viewing resources about adaptive parenting. For example, one helpful video illustrates the ways that blind parents approach parenting:
…or there is this video that comments on the ways that technology can be harnessed to accomplish parenting tasks:
Parents with Intellectual and Developmental Disabilities
For those working in the family policing system, a consideration of the literature base on parenting support programming and parenting training for preventing child maltreatment in this particular population will be helpful (Booth & Booth, 1996; Feldman, 2010; Feldman, Ducharme, & Case, 1999; Garbus & Kennedy, 1999; Llewellyn et al., 2002; Llewellyn & McConnell, 2002). Wilson and colleagues (2014) summarize this research by pointing out that interventions focus on two areas, strengthening social relationships and teaching parenting skills. However, these authors note that while “the evidence for interventions aimed at strengthening social relationships was inconclusive…positive changes were observed” (p. 3), the results had limited generalizability (application) to other populations. Commenting on the evidence for parental skills teaching, Wilson and colleagues (2014) note that “behavioural based interventions are more effective than less intensive forms such as lesson booklets and the provision of normal services” (p. 1).
While there are a small number of published research studies that evaluate these programs, a recent Cochrane review (a type of rigorous review) has indicated that the existing evidence is limited, and has called for more research that uses a more rigorous approach (Coren, Ramsbotham, & Gschwandtner, 2018). These authors note that:
there is some very low-quality evidence that some parents, mainly mothers, with intellectual disabilities are able to provide adequate parenting if they are given appropriate training and support to learn the parenting skills they need. However, there are few studies exploring how interventions might work, for whom and in what circumstances. In particular, there have been few studies that include fathers with intellectual disabilities, or that explore the views of parents themselves. (p. 1)
Parents with Psychiatric Disability
A significant amount of resources exist for thinking about how to support this population with the parenting process, although the quality of the research on these resources needs improvement (Radley, Grant, Barlow & Johns, 2021). Although it is two decades old, a seminal study in the field documented the types of programs available to support parents with psychiatric disability across the U.S. (Nicholson, Biebel, Hinden, Henry, & Stier, 2001). These diverse programs shared a series of focus areas, namely “addressing basic needs such as housing and financial support, improving parents’ coping and problem-solving skills, improving parenting skills specifically, and enhancing child development. However, as will be discussed below, the relative emphasis on each of these goals, and the particular interventions implemented to achieve these goals, differed across programs” (Nicholson, Biebel, Hinden, Henry, & Stier, 2001, p. 45).
Two examples of these programs are provided in this study. First, one psychoeducational intervention focused on parents of children aged 8-15. The parents had affective disorder diagnoses and had recently experienced hospitalization. The intervention focused on educating parents on the potential effect of their illness on children as well as on methods of building communication skills between parent and child in relation to the topic of psychiatric disability. This program also included an unspecified format for family therapy. These were seen as important tools in fostering resiliency among the children and was found to be effective in follow-up research conducted over time (Nicholson, Biebel, Hinden, Henry, & Stier, 2001, p. 47). Second, a different program created a therapeutic nursery model for children aged 0 – 5 years old with a parent with psychiatric disability. Interventions included parental coaching as well as milieu therapy for the children in a stimulating environment. Evaluation of the program reported success for children in achieving developmental milestones, with differences in mothers’ clinical characteristics and larger, more supportive family networks (Nicholson, Biebel, Hinden, Henry, & Stier, 2001, p. 47).
Internet-based support, stand-alone parenting education and peer-support approaches are documented in the clinical literature for parents with psychiatric disability. Internet-based parenting interventions allow disabled parents to build connections with other parents and caregivers, especially at times that work for their schedules. In addition, the flexibility of meeting online allows disabled parents to overcome the challenges of dealing with limited transportation, lack of funds for transportation, childcare for the time they would be in a program, or navigating dangerous neighborhoods (Kaplan, Solomon, Salzer & Brusilovskiy, 2014). One recent study of an internet-based parenting intervention for this population found that parenting and coping skills were enhanced, and parental stress decreased (Kaplan, Solomon, Salzer & Brusilovskiy, 2014). However, it is important to note that this program did not appear to support improved parenting efficacy (Kaplan, Solomon, Salzer & Brusilovskiy, 2014).
One recent study evaluated the Let’s talk about children psychoeducation-based parenting intervention for parents with psychiatric disability (Mayberry, Goodyear, Reupert, Sheen, Cann, O’Hanlon, & Cuff, 2019). While existing studies focused primarily on the population with affective disorders, this study sought to broaden the scope of the sample, looking at a larger population of parents with psychiatric disability to increase generalizability. This program uses a manual throughout 2-3 sessions and is considered a psycho-educational intervention. It is described as aiming to:
…empower the parent, within the context of his or her illness, and provide parents with the skills and confidence to support their family, with the overall goal of impacting positively on family dynamics. Parent empowerment, a core element in LT, is a process whereby parents ‘gain greater influence on their families . . . [and] greater access to networks, resources, and information’ so they are able to better support their children. (Kim & Bryan, 2017, p. 169)
Another focus of this intervention is to center the well-being and healthy development of the children. Although the program focuses on the parent as the primary client, it is framed as a family recovery intervention as it supports the parent in their parenting role. The authors evaluated parents’ self-reported views regarding the impact of the intervention and found improvements in parenting skills and family functioning. Specifically, parents reported better insight, the normalizing of psychiatric disability in the family, changes to how the family communicates, the importance of supporting the parenting role, and awareness of options for additional parenting supports (Mayberry, Goodyear, Reupert, Sheen, Cann, O’Hanlon & Cuff, 2019).
Peer support services are also documented as effective for parents with psychiatric disability as an adjunctive resource (Kaplan, Solomon, Salzer, & Brusilovskiy, 2014). In general, peer support draws on the notion that those with lived experience of psychiatric disability who are in recovery may be in a unique position to provide support, validation, and even hope to other people with psychiatric disability (Nicholoson & Valentine, 2019). Applied to parenting, the idea is that parents with psychiatric disability “may be less willing to share concerns or request help regarding their role as parents from professionals for fear of losing custody, feeling embarrassed, or feeling inadequate when sharing issues with a non-peer parent” (Kaplan, Solomon, Salzer & Brusilovskiy, 2014, p. 2). Nicholson & Valentine (2019) describe four core program elements of any peer support program engaging the parent, exploring what is going on with the parent, planning with the parent, and accessing and advocating with the parent. These core activities are based on the idea that peer support services should focus on parents’ strengths while being culturally sensitive and trauma-informed. The specific types of actions that parent peer specialists engage in are described as follows:
Parent peer specialists potentially offer examples of success, serve as role models, reframe deficits and set-backs, normalize parenting experiences, and disclose information about themselves with purpose and intent. The lived experience that peers share also may include expertise in navigating the health care and social service systems as a parent with SMI. For example, they may be aware of community resources or problem-solving strategies that have worked for them. (Nicholson and Valentine, 2019, 2).
While additional research is needed to support evidence-based programming in this area as well, the interventions detailed here provide a sound basis upon which you can begin to think about your case practice with these populations.
Elements of Disability Culture Related to Involvement in the Family Policing System
Disabled parents, especially those involved with the family policing system, are held to ableist notions of what it means to be a good parent outside of the disability community. According to Ora Prilleltensky (2003),
[r]ooted in both patriarchy and ableism is the supposedly clear-cut division between dependence and independence, between those who care and those who are cared for…Thus, parents who are unable to independently fulfill all of the physical tasks of child rearing, are often subjected to skepticism regarding their ability to function as parents. (p. 24)
Interdependence is a critical aspect of disability culture (Gill, 1995). Nonetheless, disabled parents are expected to be able to care for their children without the assistance of others, and interdependence in the form of supported parenting is seen as a deficit (Hayman, 1990). Lightfoot & LaLiberte (2011) explain, “[p]arents have often been assessed based on whether they can independently be responsible for all aspects of caring for their child or children, even though most [nondisabled] parents rely on various formal and informal supports for caregiving.” (390).
Disabled parents also contend with other presumptions about their fitness to raise children. For example, d/Deaf parents face speculation that their children’s language development will be delayed, while blind parents and those with physical disabilities face assumptions that they cannot safely care for their children (Stein, 1994). Parents with intellectual disabilities are assumed to be unable to care for children and incapable of learning parenting tasks (Powell, 2016). Meanwhile, parents with psychiatric disabilities experience stereotypes that they are a danger to their children (Glennon, 2003). Despite these biases, parents with disabilities often exhibit extraordinary strength and resiliency. In all its forms, participation in family life is part of disability culture.
Although the family policing system is administered primarily by states, the federal government plays an important role in overseeing the system by enacting laws and funding programs. In 1974, Congress passed the Child Abuse Prevention and Treatment Act (CAPTA), which incentivized states to create child maltreatment reporting systems to systematically track and respond to child abuse and neglect allegations. CAPTA allocated federal funding to states for child maltreatment, assessment, investigation, prosecution, and treatment activities, as well as grants to state and local government agencies and nonprofit organizations for demonstration programs and projects. CAPTA also set forth a minimum definition of child abuse and neglect. Notably, many believe that CAPTA’s definition of neglect is often conflated with poverty. For parents with disabilities, who are much more likely than others to be poor, the framing of poverty as neglect has led to many families being unnecessarily subjected to the family policing system.
In 1978, Congress passed the Indian Child Welfare Act (ICWA) to establish standards for the placement of Native American children in foster and adoptive homes and deter the breakup of Indian families. ICWA was passed in response to the staggering rates of child removal among Native American children and growing concerns that these removals could have adverse cultural consequences. ICWA requires agencies to provide active efforts to the family and actively involve the child’s tribe in all family preservation and reunification activities. ICWA is especially important to consider when working with disabled parents, as disability is more prevalent among Indigenous populations.
To address the increasing number of children in the foster care system, Congress enacted the Adoption Assistance and Child Welfare Act (AACWA) in 1980. AACWA had two primary goals: (1) fund child protection services to prevent the removal of children from their families, and (2) create a federal adoption assistance program. Rather than only reimbursing states for the cost of foster care, thereby incentivizing removal, AACWA allocated funding for preservation services, intended to prevent the removal of children, and reunification services, intended to aid the return of children to their families. Further, AACWA required states to make reasonable efforts to prevent the removal of children from their homes and reasonable efforts to reunify children who have been separated from their parents.
Also included in AACWA was the establishment of funds for both financial and medical help that would promote adoptions of children living in foster care, as well as reduce the financial barriers to completing adoption, as well as assist adoptive families in meeting the needs of their adopted children (Buckles, 2013). Framed as subsidies, this help “is available for children who meet certain eligibility requirements, including that the child is deemed as having special needs due to their physical, mental, or developmental disabilities or because there are other factors that may make it harder to find an adoptive family” (Children’s Bureau, 2020, 1). Research suggests that these subsidies have increased rates of adoption of children in foster care by foster parents (Buckles, 2013).
Nearly two decades later, in 1997, Congress passed the Adoption and Safe Families Act (ASFA). ASFA amended AACWA by expanding and clarifying some provisions of the earlier law and modifying other provisions. ASFA reaffirmed the family policing system’s goal of permanency originally established with AACWA but stated that permanence would best be achieved through the adoption of children in foster care, not family preservation or reunification. ASFA established definitive time limits on family reunification efforts and authorized states to begin to terminate parental rights proceedings for children who have been in foster care for fifteen of the most recent twenty-two months (commonly known as the “15/22 rule”). These strict timelines can be difficult for parents with disabilities to comply with because obtaining appropriate and accessible supports can take a great deal of time (National Council on Disability, 2012).
However, it is important to note that the 15/22 rule includes exceptions when reasonable efforts have not been provided. Thus, child protection agencies should offer disabled parents additional time when needed. ASFA also allows child protection agencies to bypass reasonable efforts and instead terminate parental rights if the child has been subjected to aggravated circumstances, and some states have included parental disability under this broad provision (National Council on Disability, 2012). Additionally, ASFA established concurrent planning as a principal instrument: states are expected to provide reunification services for families with whom it is hoped children can be reunited and concomitantly search for appropriate adoptive families if reunification efforts are determined to have failed. Unfortunately, concurrent planning allows child welfare workers’ biases about disabled parents to inform how they work with these families.
Most recently, Congress passed the Family First Prevention Services Act of 2017 (Family First Act). The Family First Act authorizes federal funds for 12 months of in-home parenting skills programs, substance use treatment, and mental health services to keep families intact and children out of foster care. Notably, the Family First Act does not obligate states to provide these services; they must “elect” to do so, and the federal government will match a state’s contribution 50% until the year 2026.
In addition to the abovementioned laws, the family policing system must comply with the Americans with Disabilities Act (ADA), and its predecessor, Section 504 of the Rehabilitation Act (Section 504). The ADA is divided into five titles that cover the various protections afforded by the law: Title I (employment); Title II (state and local government); Title III (places of public accommodation); Title IV (telecommunications); and Title V (miscellaneous provisions, such as attorney’s fees). Title II of the ADA, which concerns state and local government agencies, applies to all aspects of the family policing system, including termination of parental rights proceedings. Accordingly, the family policing system may not discriminate against parents with disabilities and must provide accessible and individualized assessments, supports, and services as well as reasonable modifications. In addition, the Department of Justice and the U.S. Department of Health and Human Services have addressed the rights of disabled parents through investigations in Massachusetts, Oregon, and New Jersey, setting precedents for the rest of the nation.
Disability-Related Debates in this Arena/Service System
Although disabled parents are overly referred to the family policing system – often without the appropriate basis (National Council on Disability, 2012) and are separated from their children at disproportionate rates – this has not been a widespread debate within that system until more recently. And this debate has been more visible only in states where investigations have been launched, such as Massachusetts. These debates relate to what appear to be widespread ableist views among social workers, judges, and collateral social service system workers about the capacity of disabled parents to take care of children. See guidance from the Department of Justice on this matter here:
In the academic literature, researchers have documented that d/Deaf and blind parents, physically disabled parents, parents with diagnoses of intellectual disabilities or psychiatric disabilities have to contend with significant amounts of stigma, stereotyping, a dearth of individualized parenting assessments and the general lack of service provision. This discrimination and poor service provision extend to disabled people wishing to become foster and adoptive parents who report experiencing both bias and barriers to connecting with potential children in foster care that could be placed with them as a result of stigma and stereotyping (U.S.D.H.H.S., 2021).
With respect to disabled children, the importance of providing “special needs” adoption subsidies for disabled children was identified by policy advocates, leading, in some cases, to increased rates of adoption for this population over non-disabled children (Johnson, Slayter, & Livingstone, 2020). Whether these subsidies create perverse incentives is unknown. Another issue raised in the context of a child death scandal in the Massachusetts family policing system relates to the challenges of identifying children with disabilities by non-disability-trained social workers, such as was seen after the death of David Almond (Office of the Child Advocate, 2021). This speaks to the challenges inherent in the breadth of knowledge that child protection workers need to know in order to do their jobs well – and to the challenges of cross-system collaboration.
Voices/perspectives of disabled people involved in this system
To contextualize our discussion of service systems designed to support disabled children and parents, we want to be sure to elevate the voices of those two constituencies. First, stories about the experiences of disabled children in foster care are not easy to find, but we should seek to listen to their voices and learn from them. This quote depicts one disabled child in foster care’s experience of care that we were able to find. Laura says of her experience:
I spent a lot of my childhood in and out of hospital, in and out of children’s homes, for one reason and another. I had a lot of operations when I was younger, on my legs – it was supposed to help me walk better and I did used to walk but I don’t now. Seems a bit of a waste of time now. I also had speech therapy but then, when I went to a day centre when I was 20 or something, I got this machine which I can use to talk, or print things out. It’s much better. I can’t remember why I first went into a children’s home but later on it was because my mum couldn’t cope. The home I first went to didn’t have any other disabled children but the one I went to when I was 13 did. There were children with mental handicaps as well as physically handicapped. I can remember being hit at my first home. That was bad because my dad used to hit me as well. I thought, well one place is as bad as another. He was horrid to my mum as well. I think they knew, social services, but I don’t know what they did about it. My mum used to ask them to take me in. I came here when I was 18. They had a meeting with my mum and dad and asked me about my future. I didn’t know what was on the cards. They said, there’s this new place we’re opening up for young people. They turned out not to be so young. There’s just me and this other girl, the others are older – I think they all came from a home that had been closed down. (Morris, 1999, p. 100).
Second, we share a series of reflections from and about disabled parents. Reflecting on how society thinks about disability and parenting, Meredith Nicholson, who identifies as Autistic, says “she often encounters disbelief that people with disabilities would engage in romantic and sexual relationships, let alone desire parenting, much as disabled people also faced disbelief that they would want to pursue higher education, obtain jobs or other life milestones” (Wang, Suksangium & Sammet Moring, 2020, para. 5). She goes on to say “There’s still this perception that we’re a burden, who would want to date us? Who would love us or want to have sex with us? That we are a liability because we would need so much, instead of that we have so much to give” (Wang, Suksangium & Sammet Moring, 2020, para. 14).
In a recent series highlighting the lives of disabled parents, the focus was on disability as a source of strength and resourcefulness in parenting. One parent is quoted as saying, “In our house, disability is an asset…there are strengths that come from having a disability. And [my daughter] is going to grow up understanding that” (Wang, Suksangium & Sammet Moring, 2020, para. 22). In reflecting on her considerations about whether to become a parent, Nicole, a woman with cerebral palsy, stated, “I was thinking about physically how I would care for a child. I knew I could do it, as a person with a disability, because I had three younger sisters I had a hand in raising…so I knew I could do it. But I did think long and hard about that” (Wang, Suksangium & Sammet Moring, 2020, para. 25). And even though Nicole had years of experience changing her siblings’ diapers, for example, she did not have disabled role models, which made seeing herself as a parent somewhat of a struggle.
On the other hand, one mother reports that “having a disability really prepared me for that big change [of having a baby] because I had already been working my schedule around my disability….I was already used to things taking a bit longer and life having to move at a slower pace…and with Evelyn, that’s just a really happy joyous reason” (Wang, Suksangium & Sammet Moring, 2020, para. 27). She goes on to say “having a parent with a disability can be a crash course in empathy and compassion in a way that maybe able-bodied parenting takes a little more effort to teach those lessons. I don’t think I’m going to have to take Evelyn to some service project to teach her compassion and empathy. I think she’s going to see it here” (Wang, Suksangium & Sammet Moring, 2020, para. 29).
The impact of intersectionality was not lost on disabled parents in this essay. “I don’t know the road that other people have walked, but for me, disability is something that’s made me really sit and think about all of those choices, and my own beliefs, where they were antiquated, where they were downright wrong…And you have to cast out what doesn’t work, whether that’s ableism, homophobia, trans-antagonism, I’m always learning something new. And that’s something that disability has helped me to do” (Wang, Suksangium & Sammet Moring, 2020, para. 31).
But perhaps one of the most well-known disabled parents in the United States was attorney and activist, Carrie Ann Lucas. Carrie Ann, who passed away in 2019, was the mother of four adopted children from Colorado (Seelye, 2019). She had a form of muscular dystrophy, which resulted in using a power wheelchair and ventilator assistance to breathe. Carrie Ann was also hard of hearing and had low vision. She was a single parent, lesbian, and Latina (Wong, 2017). Carrie Ann’s children all had disabilities, and two were Black. She was also a foster parent for other children over the years.
Carrie Ann’s first encounter with the family policing system occurred more than two decades ago when she sought to adopt her disabled niece in foster care (Powell, 2018). The process took nearly two years because of bias and speculation concerning Carrie Ann’s capabilities to care for her niece due to both of their disabilities. In fact, at one point, a judge threatened to place the child welfare worker in contempt of the court if the child was not immediately placed with Carrie Ann. At the time, the child welfare worker told the judge, “There is no way that a handicapped woman can take care of a handicapped child. We’re going to be picking up the child within two weeks.” Of course, that did not happen, and Carrie Ann went on to adopt three additional children (Powell, 2018).
Carrie Ann’s harrowing experience with the family policing system inspired her to attend law school and become a disability rights attorney. Throughout her legal career, Carrie Ann represented many parents with disabilities involved with the family policing system. Although the state deemed Carrie Ann fit to adopt four times, she was referred to the family policing system countless times because of allegations of child maltreatment (Powell, 2018). During one such incident, her daughter’s school filed a report with the family policing system because her daughter’s ponytail was “too tight.” She was also reported to the family policing system for neglecting her children because she wanted them to be independent and autonomous, such as requiring her teenage daughter to drive her own wheelchair from the school bus to the door of their home (Powell, 2018).
Carrie Ann was a tremendous mother and role model for other disabled parents. Her legacy is an important reminder that we must look beyond the ableist notion of what it means to be a good parent. Indeed, her personal experience as a multiply-marginalized disabled parent is precisely what made her an exceptional mother.
Disabled children, too, have views about their experience in the family policing system, and we need to be attentive to what they have to say to inform our social work practice. For example, Carolyn Johnson, who was previously in foster care, notes that:
as a child with a disability, it was hard to have so much uncertainty and change…It would be hard for any child to go through the foster care system, but having a disability made it more difficult for me to understand what was going on in my life. The only time that I really remember my social worker was when she came to my house to take us away. I do not recall a social worker talking with or visiting me in the foster home. It was important to know what was happening in my life. I needed someone to explain the situation to me in a way that I could understand, someone I could trust and talk to about things. Sometimes it felt like the foster homes were just in it for the money. It felt like they did not care about me or that I had a disability. (Johnson, 2006, p. 1)
While in foster care, Johnson became pregnant with a son as a young teenager. As she was both a child in the foster care system and an underage parent, she became a part of the family policing system in a new way. Reflecting on how this impacted her experience, she says, “as a parent, I felt that a lot of things I ran into with child protection were because I was a young mom with a disability. When child protection looked at me, it seemed to me that they only saw my disability. It felt like they used my disability against me. It seemed that they saw my disability, but did not see all of the ways that I was a good mom” (Johnson, 2006, 36). However, Johnson also reflected on the positive experiences she had at a residential school for disabled young people, at which she was placed while in foster care.
This experience changed my life. The staff at [the center] were wonderful. They believed in me and cared about my future. My opinions were important to them. Sometimes the staff even came to me for advice. It was the first time in my life that anyone seemed interested in my opinion. It helped me to feel confident and to see that I had important things to share. Now I love to communicate and give advice. I give them a lot of credit for my success. I also remember a special education teacher named Mrs. Klinefelter. She understood my needs and abilities. We worked together on my school work, and together we built up my self-esteem” (Johnson, 2006, p. 36)
Another child in foster care writes anonymously about his positive experience in foster care as a child with attention deficit hyperactivity disorder, saying,
Up until the 11th grade, school was a struggle. My parents abused me, which made it hard to concentrate, and they never helped or encouraged me in school. Then I went into care, missed a lot of school, and fell behind. Now I need to make a big decision: I’m 19 and only have two more years of financial support from foster care. In October of 11th grade, I was moved into Blanca’s house, where I still live. Blanca was and is the best parent I’ve had. She told me when I got there, “You are going to do well in school because you can.” Partly because she believed in me, I went to my classes every day. That semester, I got B’s in every class” (Anonymous, 2020, p. 1)
These are just a few of the many voices of disabled children and parents involved in the family policing system. As you go forward in your social work practice with this community, it will be important to lift the voice and perspective of your clients at all times to guide your work.
Policy and Practice Implications for Working with Disabled People in this Arena/Service System
Whether your social work practice is at the micro, mezzo, or macro level in the family policing system, some clear, empowerment-oriented principles you can use to ‘check yourself’ in your work. You can start by adopting some of the core principles of empowerment-oriented social work practice with the disability community discussed in chapter 1. Then, ask yourself, is this principle reflected in how I am implementing this policy/drafting this policy language/planning this program/designing this case plan? And, of course, always work to bring your intersectional, anti-oppressive, and critically culturally competent lens with you on the journey!
Community inclusion – posits that all people have the right to be respected and appreciated as valuable members of their communities. This includes, for example, a focus on helping people to participate in activities in community settings as opposed to institutional settings, and to generally being part of the larger community. Notably, research suggestsdisabled people of color may be less likely to experience community inclusion in disability services.
Self-determination – This is conceptualized as the process of making something happen in one’s own life. It is the opportunity to make choices, set goals, solve problems, and make decisions for oneself.
Dignity of risk – This is the idea that everyone can learn from everyday risks. Central to honoring the dignity of risk is respecting an individual’s autonomy and self-determination to make choices. Also important is the right to make choices even if professionals in the person’s life feel that they could endanger the decision-maker in question. To respect a person’s dignity of risk, one should provide intermittent support even if others do not approve of the unsafe choice. As there is inherent dignity in the experience of everyday risk, this concept suggests that limiting a disabled person’s ability to make a risky choice, or limiting their access to the community does not foster overall wellness in the long run.
Circles of support – groups of people that can be formal staff, family members, friends, or neighbors who together come around a person to support them.
Nothing about us without us – This phrase became the rallying cry of the disability civil rights movement adopted in the 1990s. This phrase communicates the idea that no policy should be decided by any representative without the full and direct participation of those whom the policy affected. These days some have evolved towards saying “about us, by us!”
As you consider these principles, you can start by exploring your able-bodied privilege. Read the prompts on able-bodied privilege from the Autistic Hoya blog, written by Autistic disability justice activist and lawyer Lydia X. Z. Brown (they/them).
Which items are most salient to you? You may consider the list items from a personal and/or a professional perspective, focusing on how you may or may not experience these issues yourself or how you may have encountered these issues as a social worker. Also, consider how your race and ethnicity factor into able-bodied privilege? This is about thinking intersectionally. Continue by building your personal disability awareness. What values and/or ideas do you hold that may unconsciously perpetuate ableism in your child protection practice? Where did you pick up these values? Think intersectional: How does this play out with your disabled clients of color?
Just as it is important to acknowledge our potential for racism as people raised in a racist society, so too is it important to recognize the ways we may have engaged in the use of ableist language or expression of ableist attitudes. How have you or your agency/organization/company unconsciously or consciously used ableist language, or expressed ableist attitudes? How do race and ethnicity factor in here? How can you change things moving forward?
And now, let’s summarize what we’ve learned so far about how to engage in intersectional, anti-racist practice with the disability community in this service arena:
- Check your ableism and able-bodied privilege
- Use the guiding principles to guide child protection practice
- Respect disabled people as the experts on disability
- Keep developing your disability competence lens
- Work to promote all aspects of accessibility
- Watch for the ways in which all social identities intersect with disability to impact processes and outcomes, for example race, ethnicity and gender
- Embrace the concept of supported parenting
Application of Theoretical Perspectives and Practice Model from Chapter 2
Chapter 2 of this textbook presents a practice model for working with disabled clients. This model addresses the combined use of critical cultural competence, anti-oppressive practice, and intersectionality in case practice while keeping in mind the guiding principles of disability social work, such as nothing about us without us, community inclusion, and the dignity of risk, among others.
In this practice arena, applying the theoretical model can especially be accomplished in working with children or parents at the assessment and intervention phases by providing information about where parents have decision points in the case process as part of the power-sharing anti-oppressive practice is known for. This also connects to the “nothing about us without us” guiding principle.
Infusing the dignity of risk concept in the intervention phase will be especially important to consider, but challenging for structural and cultural issues related to the family policing system. The dignity of risk concept is an incredibly challenging one for social workers to embrace as a guiding principle of empowering disability social work practice because of their primary duty towards child safety. However, child protection workers should be aware of the benefits of learning through the dignity of risk in combination with the fact that disabled parents can parent with accommodations that are not known to many workers at the first meeting.
Keep the theoretical practice model in mind as you read the following case study about a disabled mother, her daughter, and their family. How might this practice model have been used to good effect in this case scenario?
Sara Gordon is a 21-year-old woman who has a developmental disability. In 2012, she gave birth to Dana.wo days later, DCF removed the baby from Sara’s custody while she was recovering from childbirth in the hospital and placed her in foster care. Sara lives with her parents, who do not have developmental disabilities. Her parents have continually intended to provide her support in parenting her child. Ms. Gordon’s mother quit her job to provide full-time support for Sara and Dana.
Information about Sara Gordon’s developmental disability: Due to Sara’s developmental disability, she requires repetition, hands-on instruction, and frequency to learn new things. She has difficulty reading and following oral instructions and explains that she learns best visually and through practice. Nonetheless, an expert had evaluated her, and said that with support from her family, she could safely care for her child.
Information about Sara Gordon’s life: Sara lives with her parents in rural Massachusetts. Sara volunteers for an organization in her community, matching families with donated clothing and household items. Sara is finishing a few courses in a special education program in her high school to obtain her diploma. Mostly, Sara aspires to parent Dana – to teach her to hike and fish. However, Sara has realistic expectations and acknowledges that it would be difficult to care for Dana on her own, and fully recognizes that she needs the assistance of her parents.
Removal of Dana Gordon by DCF: While Sara Gordon was in the hospital, recovering from giving birth to Dana two days earlier, DCF received a report containing allegations of neglect.” In DCF’s intake report about the matter, concerns included the fact that Ms. Gordon “was not able to comprehend how to handle or care for the child due to the mother’s mental retardation.” Investigators said she had difficulties holding and feeding Dana and that she had to be reminded by an investigator to burp the baby and clean spit out of the baby’s mouth. Sara was uncomfortable with changing the baby’s diaper. Sara forgot to feed Dana during one night shift. Sara explained to the investigators that she could not read an analog clock, which is why she had trouble remembering when she last fed her daughter. Sara also reported that she started keeping a journal to track feedings.
The grandparents’ plans to support Dana and Sara Gordon: Sara Gordon’s mother and father intended to assist Sara with parenting Dana. DCF was concerned because the Gordons had been involved with the agency in the 1990s, although all services to the family were closed based on the Gordons’ cooperation and successful completion of a service plan. No current or recent safety concerns were noted, and ample baby supplies were in the home. The Gordon family-supported parenting plan involves the Gordons obtaining guardianship and responsibility for making educational, medical, and other significant decisions, while Sara would live in the home and learn how to care for her daughter with her mother’s assistance. However, DCF decided to place the baby in a non-kinship foster placement.
Reasons for non-kinship foster care placement: Sara was “unable to recognize, comprehend and react to the demands of an infant. . . . The concerns are there are no services in place. . . . [Dana] needs to come into foster care at this time. There are concerns with [Sara’s] ability to meet the basic needs of a newborn child.” DCF also noted that Sara and her parents had a previous history with DCF and that she has “serious developmental delays.”
Sara’s early visits with Dana: Sara had some difficulty with feedings, diaper changes, and transitioning Dana between people. DCF also noted that Sara walked away from the changing table on a couple of occasions, during supervised visits. Since that time, Sara has participated in numerous parenting classes, and her parenting skills have improved significantly.
Interventions from DCF: Over the next two years, DCF provided Sara basic support and opportunities while she sought to reunify with Dana. Visitation was set at once per week for one hour, despite Sara’s request for more frequent visits. DCF supervised visits outside of the family home. DCF would not permit the Gordons or vocational support caseworkers specializing in working with parents with disabilities to assist/teach Sara for most of the visits. The frequency of visits was reduced to once every other week after seven months, when DCF changed Dana’s permanency planning goal from reunification to adoption. Sara participated in and successfully completed DCF-sponsored parenting classes.
Late assignment of a parent aide: Sara agreed with DCF’s requirement to work with a parent aide during her visitation with Dana to learn and utilize effective parenting skills. A parent aide is a trained individual who supports and strengthens parenting skills. However, DCF failed to provide Sara parent aide services for more than eight months and only provided these services after it already decided that Sara would not be fit to parent and changed the goal to adoption. Moreover, even after the parent aide was secured, DCF limited the parent aide’s participation to the last thirty minutes of Sara’s visits with Dana. The agency otherwise tasked the parent aide with teaching Sara parenting skills using a “life-like” doll.
Dana’s treatment by her foster parents: Numerous safety concerns were noted in Dana’s pre-adoptive foster care placement. In two years, Dana received a black eye, bumps, bruises, scrapes, burnt hands on two occasions, and was left unattended on a kitchen table when she was only a few weeks old.
Note: Dana and Sara’s case uses a pseudonym, but it is a real case from Massachusetts. This case led to a Federal investigation against Massachusetts’ child protection authority. Massachusetts is in the process of working to become more disability culturally competent as a child protection agency as a result. It is likely that, slowly, other states will have to follow suit. Sara and Dana were reunited in 2016
Ableism is defined as “the belief that because persons with disabilities are not typical of the nondisabled majority, they are inferior. Ableism precipitates devaluation, while the results of devaluation, including exclusion, ostracism” and a lack of privilege, can reinforce the attitudes, behaviors, and government actions of those who oppress. Four manifestations of oppression characterize ableism, “containment, expendability, compartmentalization and blaming the victim” (Mackelprang & Salsgiver, 2015, p. 105).
- How do you see the four manifestations of ableism manifested in this case? If so, in what ways?
- How would you have approached working with the family in this case if you were the child welfare worker? How might this practice model have been used to good effect in this case scenario?
- How could you have implemented the guiding principles for disability social work practice in this case? See chapter 1 for a review of those principles (e.g., self-determination, dignity of risk, “nothing about us without us,” community inclusion, and circles of support).
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- In this chapter, the authors use a mix of identity-first disability language and person-first disability language. In keeping with the American Psychological Association’s guidelines, we acknowledge that different members of the disability community may have different choices about how they wish to be referred to, see a discussion here: https://www.apa.org/pi/disability/resources/choosing-words. ↵
- Based on the work of scholar Dorothy Roberts (2022 & 2020), the authors are using the term ‘family policing system’ instead of ‘child welfare system’ or ‘child protection system’ because the authors believe that it most accurately and directly describes the system’s purpose and impact. ↵
- Kaye (2011b) conducted an analysis that looked at disabled parents by race and ethnicity, documenting significant variation across groups: “13.9 percent of American Indian/Alaska Native parents and 8.8 percent of African American parents have a disability. Further, 6 percent of white, 5.5 percent Latino/Hispanic, and 3.3 percent of Asian/Pacific Islander parents have a disability. Of these parents, 2.8 percent have a mobility disability, 2.3 percent have a cognitive disability, 2.3 percent have a daily activity limitation, 1.4 percent have a hearing disability, and 1.2 percent have a vision disability” (Kaye, 2011a, 10). Lastly, 9% of all children in the country are estimated to have disabled parents, totaling to approximately 6.1 million children (Kaye, 2011b). ↵
- According to Carol Padden and Tom Humphries, in Deaf in America: Voices from a Culture (1988): “We use the lowercase deaf when referring to the audiological condition of not hearing, and the uppercase Deaf when referring to a particular group of deaf people who share a language – American Sign Language (ASL) – and a culture. The members of this group have inherited their sign language, use it as a primary means of communication among themselves, and hold a set of beliefs about themselves and their connection to the larger society. We distinguish them from, for example, those who find themselves losing their hearing because of illness, trauma or age; although these people share the condition of not hearing, they do not have access to the knowledge, beliefs, and practices that make up the culture of Deaf people.” ↵