Chapter 5 Child Welfare Removal Reunification and Termination

Chapter 5: The Child Welfare System: Removal, Reunification, and Termination
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Tiffany Callo,[208] a wheelchair user with cerebral palsy, dreamed of being a mother. In 1987, Tiffany’s dream came true when she gave birth to her son David. Immediately following David’s delivery, the county’s child welfare agency asserted that Tiffany and her boyfriend, who also had a physical disability, could only take their son home from the hospital if they had a nondisabled caregiver with him at all times. Shortly after David’s birth, Tiffany’s relationship with her boyfriend began to deteriorate, and domestic violence ensued. Unable to deal with the domestic turmoil, David’s live-in caregiver moved out. David was immediately removed to foster care by child welfare workers. Meanwhile, Tiffany learned that she was again pregnant. Her second son, Jesse, was immediately removed to foster care by child welfare workers. Tiffany was granted limited supervised visits with David and Jesse while she fought with the county for custody of her children. Realizing that she would need some assistance to care for her sons, Tiffany requested attendant care to help her with parenting activities, which the county denied.

In June 1988, a custody hearing began. As evidence, the county presented a videotape of Tiffany slowly diapering David during a supervised home visit. The county asserted that the tape demonstrated Tiffany’s inability to care for her child because it documented her slow movements as she changed David’s diaper. This argument ignored Tiffany’s adaptive care for her baby, encouraging him to be patient. Expert testimony supported the mother’s behavior, stating that infants learn to hold still during long diapering sessions when parents support their patience.

Eventually, battling with the child welfare system wore her down. David and Jesse were ultimately adopted by two separate families, despite assurances that they would remain together. Tiffany was granted a supervised annual visit with each child.

Tiffany’s tragic story highlights an all-too-familiar situation for many parents with disabilities. More than two decades since Tiffany lost her children, parents with disabilities still do not fit the norms and expectations of the American nuclear family, and often run afoul of presumptions and myths when they have to deal with the child welfare system. Parents with disabilities and their families are frequently, and often unnecessarily, forced into the system and, once involved, lose their children at disproportionately high rates. This chapter examines the child welfare system’s treatment of parents with disabilities and their families, including state dependency statutes, disparities caused by inadequacies in the ASFA, and the perceived limitations on the application of the ADA. The “unfit parent” standard regularly applied to parents with disabilities is one of the major threats to people with disabilities who choose to parent, and presumptions about “fitness to parent” carve out parents with disabilities as a key population that must prove its ability to parent in American society. Further barriers in representation and access within the child welfare system compound the discriminatory impact on parents with disabilities and the consequent breakup of loving families that can result.
The Child Welfare System: A Brief Overview

The child welfare system “is a group of services designed to promote the well-being of children by ensuring safety, achieving permanency, and strengthening families to care for their children successfully.”[209] The system includes state child welfare agencies, the courts, private child welfare agencies, and other service systems (such as mental health, substance abuse, health care, education, and domestic violence).[210] The goal of the child welfare system is laudable: “To promote the safety, permanency, and well-being of children and families.”[211] The primary responsibility for the child welfare system rests with the states; however, the Federal Government plays a significant role in supporting states in the delivery of services by funding programs and legislative initiatives.[212] The law in most states makes the child welfare system responsible for responding to and following up on allegations concerning the safety of and risk of harm to children in the community.[213]

The ACF at HHS is responsible for the administration and oversight of federal funding to states for child welfare services under Titles IV-B and IV-E of the Social Security Act.[214] Two titles under the Social Security Act provide federal funding targeted specifically at foster care and related child welfare services. Title IV-E provides an open-ended entitlement for foster care maintenance payments to cover a portion of the food, housing, and incidental expenses for all foster children who meet certain federal eligibility criteria.[215] Title IV-E also provides payments on behalf of eligible children with “special needs” who meet other federal eligibility criteria. Special needs are characteristics that can make it more difficult for a child to be adopted and may include disabilities, age, being a member of a sibling group, or being a member of a minority race.[216] Title IV-B provides funding for child welfare services to foster children, as well as children remaining in their homes.[217] Title IV-B also provides funding to states and eligible tribes to support family preservation services, community-based family support services, time-limited reunification services, and adoption promotion and support services.[218]

Families typically become involved with the child welfare system after an allegation of abuse or neglect (also referred to as child maltreatment) is made to child protective services (CPS). CPS is a specialized part of the child welfare system.[219] State laws require CPS agencies to take reports from people who believe a child has been abused or neglected; determine whether abuse or neglect has taken place; ensure that there is a plan in place to keep children safe; and provide services to families to ensure their children’s safety.[220] Anyone who suspects that a child is being abused or neglected can call the local CPS to report the suspicion.[221] Any member of the community, parents, or child victims themselves can initiate an allegation of suspected child abuse or neglect. Professionals who work with children or families—such as doctors, nurses, social workers, teachers, psychologists, and police officers—are “mandated reporters,” legally required to report suspected abuse or neglect.[222]

Once they receive a report of child maltreatment, CPS workers screen the allegation for credibility.[223] A report is screened in when there is sufficient evidence to suggest that an investigation is warranted. Conversely, a report may be rejected for insufficient evidence or if the situation reported does not meet the state’s legal definition of abuse or neglect.[224] These standards are in place to ensure that the state does not run afoul of the 14th Amendment right of parents to be free from state intrusion unless such intrusion is required to protect citizen children.

If CPS deems the allegation credible, workers conduct an investigation to determine whether the child is safe, whether abuse or neglect has occurred, and whether there is a risk of it occurring again.[225] At the end of an investigation, CPS workers typically conclude either that the allegations are substantiated and require further action or unsubstantiated and not worthy of continued investigation or action.[226]

The CPS agency will initiate a juvenile court action if it determines that a dependency proceeding is necessary to keep the child safe.[227] To protect the child, the court can issue temporary orders placing the child in shelter care during the investigation, ordering services, or ordering certain individuals to have no contact with the child. At an adjudicatory hearing, the court hears evidence and decides whether maltreatment occurred and whether the child should be under the continuing jurisdiction of the court. The court then enters a disposition, either at that hearing or at a separate hearing, which may result in the court ordering a parent to comply with services necessary to alleviate the abuse or neglect. Orders can also contain provisions regarding visitation between the parent and the child, agency obligations to provide the parent with services, and services needed by the child. If a child has been abused or neglected, the course of action depends on state policy, the severity of the maltreatment, an assessment of the child’s immediate safety, the risk of continued or future maltreatment, the services available to address the family’s needs, and whether the child was removed from the home and a court action to protect the child was initiated.[228]

For the state to succeed in termination proceedings, clear and convincing evidence must establish that statutory grounds for termination have been met and termination must be in the best interest of the child.[229] Termination of parental rights is devastating and final. Describing the severity and significance of termination of parental rights,

Stephanie Gwillim, in her St. Louis University Public Law Review article, said, “Termination of Parental Rights (TPR) is the death penalty of civil cases. Once a parent’s rights to his or her child are terminated, that parent’s rights to care for, visit, or make decisions for the child are gone forever: the legal parent-child relationship has ended. The parent cannot seek a modification for the permanent custody order after his or her rights have been terminated. The child can immediately be put up for adoption and a biological parent may never see their child again.”[230]
Disability Law and the Child Welfare System

Both the ADA and Section 504 of the Rehabilitation Act (for agencies receiving federal funding) apply to the child welfare system. The ADA was passed with the intent of ensuring “full and equal opportunity” for Americans with disabilities. Undoubtedly, the ADA’s breadth and national mandate of eliminating disability-based discrimination applies to the child welfare system and dependency courts. Indeed, the ADA’s legislative history indicates a clear correlation. For example, during a congressional hearing, Justin Dart, Jr. (referred to as the “father of the ADA” by the disability community) testified, “We have clients whose children have been taken away from them and told to get parent information, but have no place to go because the services are not accessible. What chance do they ever have to get their children back?”[231] Another witness attested, “These discriminatory policies and practices affect people with disabilities in every aspect of their lives… [including] securing custody of their children.”[232] Echoing the need to eliminate discrimination faced by parents with disabilities, another person testified that “being paralyzed has meant far more than being unable to walk—it has meant…being deemed an ‘unfit parent’” in custody proceedings.[233] Thus, “The ADA’s unequivocal rejection of prejudicial stereotypes and inflexible policies that harm people with disabilities could provide an important basis for rethinking child welfare policy toward families in which at least one or more parent has [a disability]”.[234]

Because the child welfare system generally includes state and local agencies, Title II of the ADA applies.[235] Accordingly, the system must comply with Title II’s mandate: “No qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity.”[236]

Pursuant to Title II, child welfare agencies must do the following:

    Provide parents with disabilities an equal opportunity to participate in programs, services, and activities.[237] To implement this mandate, the agencies must make reasonable modifications in policies, practices, or procedures, unless such modifications would fundamentally alter the nature of the service, program, or activity.[238]
    Administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified people with disabilities.[239]
    Not impose or apply eligibility criteria that screen out or tend to screen out any person with a disability from fully and equally enjoying any service, program, or activity, unless such criteria can be shown to be necessary for the provision of the service, program, or activity being offered.[240]
    Furnish auxiliary aids and services when necessary to ensure effective communication, unless an undue burden or fundamental alteration would result.[241]
    Provide, as needed, benefits, services, or advantages beyond those required by the regulation to people with disabilities.[242]
    Not impose surcharges on people with disabilities to cover the costs of measures to ensure nondiscriminatory treatment, such as making modifications required to provide program accessibility or providing qualified interpreters.[243]
    Not deny the benefits of programs, activities, and services to people with disabilities because entities’ facilities are inaccessible. [244]
    Provide services, programs, and activities that, when viewed in their entirety, are readily accessible to and usable by people with disabilities.[245]

Moreover, the child or children at the heart of the TPR proceeding qualify as a party suffering discrimination in accordance with the ADA owing to their familial association. According to the ADA, “A state or local government may not discriminate against individuals or entities because of their known relationship or association with persons who have disabilities.” This prohibition applies to cases where the public entity has knowledge of both the individual’s disability and his or her relationship to another individual or entity.[246] Thus, the ADA protects the children of parents with disabilities involved in TPR proceedings.

The ADA applies to both TPR proceedings and reunification services. The Supreme Court has said, “The fact that the [ADA] can be ‘applied in situations not expressly anticipated by Congress does not demonstrate ambiguity. It demonstrates breadth.’”[247] According to Dale Margolin, in her article “No Chance to Prove Themselves: The Rights of Mentally Disabled Parents Under the Americans with Disabilities Act and State Law,” “TPR and the ADA are inherently related: The TPR involves an examination of both a person’s disability and the state’s implementation of services. Furthermore, contrary to the fears of some state courts, allowing a parent to assert a violation of the ADA does not mean that that the child’s rights will be compromised. The child is always the focus of a family court proceeding, even when the court is examining a potential violation of the ADA. In virtually every state, the ‘best interest’ of the child is considered during the TPR. Furthermore, a parent’s evidentiary attack should not be viewed as necessarily contrary to the interests and rights of a child; if a parent has been discriminated against, and the parent-child relationship is severed, in part or in whole, because of this discriminatory treatment, the severance has drastic, and potentially harmful, consequences for the child.”[248]

TPR proceedings are services, programs, and activities covered by the ADA, which requires that there be no discrimination in these proceedings and reasonable modifications in policies, practices, and procedures that affect custody determinations if such modifications are necessary to avoid discrimination on the basis of disability (unless the public entity can demonstrate that making the modifications would fundamentally alter the nature of the service, program, or activity). In fact, DOJ considers court actions to be “state activity” for purposes of the ADA and thus prohibits discrimination in all state judicial systems.[249] Notably, the Ninth Circuit has applied Title II to parole proceedings, which, according to the court, exist to protect the public, just as TPRs exist to protect children.[250] Reunification and other family preservation services should also be recognized as services, programs, and activities. In fact, federal courts have interpreted Title II broadly and specifically held that it applies to social services.[251] In addition, appropriate reunification and preservation services to parents with disabilities should include relationship-based intervention that facilitates the development and experiences of infants and children. When parents are deprived of these services, their children suffer the same deprivation.

In sum, the child welfare system must comply with the ADA, as well as Section 504 of the Rehabilitation Act as long as it receives any federal funding. Agencies may not discriminate on the basis of disability and must provide reasonable accommodations to appropriately serve parents with disabilities.
Disparate Impact of Child Welfare System on Parents with Disabilities and Their Families

Beginning with the investigation into a report of child maltreatment, bias pervades the child welfare system, and “at any step in the process, societal prejudices, myths, and misconceptions may rear their heads.”[252] Systematic discrimination by state courts, child welfare agencies, and legislatures against parents with disabilities and their families has taken a toll. Statistics indicate that children of parents with disabilities are removed from their parents with alarming frequency.

Although no national study has identified the total number of parents with disabilities who have been involved in the child welfare system, TLG recently completed a research study that identified the number of children in the child welfare system who have caregivers[253] with disabilities.[254] To complete this study, TLG analyzed data from 19 states[255] that met a 10 percent threshold for reporting to the National Child Abuse and Neglect Data System (NCANDS), a federally sponsored national data collection effort created to track the volume and nature of child maltreatment reporting each year in the United States. This study found that 29,986 victims (12.9 percent) had a caregiver with a reported disability: 21,543 victims (10.3 percent) had caregivers with a single disability and 5,443 victims (2.6 percent) had a caregiver with multiple disabilities. The race or ethnicity of children whose caregivers had a disability in the child welfare system of this study was as follows: white, 13,671 (50.7 percent); Latino/Hispanic, 4,922 (18.3 percent); African American, 4,255 (15.8 percent); American Indian/Alaskan Native, 1,833 (6.8 percent); Asian/Pacific Islander, 179 (0.7 percent). The types of disability of caregivers with a single disability included emotional disturbance, 12,427 (6 percent); medical condition, 3,598 (2.2 percent); learning disability, 2,885 (1.9 percent); physical disability, 1,350 (0.8 percent); intellectual disability, 726 (0.5 percent); and visual or hearing disability, 419 (0.2 percent). No data were available on the distribution of disabilities among the 2.6 percent of caregivers with multiple disabilities. This research likely greatly underestimates the number of caregivers with a disability, as parents are not routinely assessed for disability at the beginning of cases; even so, it demonstrates that involvement in the child welfare system of caregivers with disabilities is affecting thousands of children.

Researchers at the Center for Advanced Studies in Child Welfare (CASCW) at the University of Minnesota recently completed a study to understand the prevalence of parental disability among cases of termination of parental rights and to assess disability disproportionality in TPR cases.[256] Using MinnLInK data, which includes Minnesota state administrative data from multiple agencies, cases of TPR were identified in the Social Service Information System (SSIS) database in 2000–2009. Parents whose parental rights were terminated were matched to their educational records in the Minnesota Department of Education database. A parent was determined to have a disability on the basis of his or her record of having a disability in the school system. This study found the risk ratio for TPR for a parent with a disability label in his or her education records to be 3.26. In other words, parents who had a disability label in their school records are more than three times more likely to have TPR than parents without a disability label. The risk ratio for child welfare involvement for a parent with a disability label in his or her educational records is 2.37. In other words, parents who had a disability label are more than twice as likely to have child welfare involvement than their peers without such a label. Emotional or behavioral disorders (60.2 percent) were the most common disability labels for parents with TPR in this study. Parents who were labeled in the special education database with a specific learning disability made up 17.3 percent of the sample; those with a developmental or cognitive disability made up 9.3 percent of the sample; and 13.2 percent were labeled as having other types of disabilities. Although this study focused on a limited set of Minnesota parents with disabilities (parents who were involved in child welfare whose records could be located in the education database), it clearly demonstrates that disproportionality related to parental disability exists in child welfare.

Before these studies, little was known about what portion of child welfare populations comprised families with caregiver disability. Because child welfare agencies did not collect this kind of data, information at this level of detail was not available.[257]

Overall, involvement in the child welfare system results in increased numbers of families torn apart by removal of their children from their homes. Indeed, studies concerning the removal rates for parents with disabilities have long hinted at the significant over-involvement of these families with the child welfare system. Removal rates where parents have a psychiatric disability have been found to be as high as 70 percent to 80 percent;[258] where the parent has an intellectual disability, the rates range from 40 percent to 80 percent.[259] In families where the parental disability is physical, 13 percent have reported pathologically discriminatory treatment in custody cases. The deaf and blind communities also report extremely high rates of child removal and loss of parental rights.[260]

Overrepresentation is not a new phenomenon. A 1991 study examined more than 200 consecutive juvenile court cases in Boston and found that despite greater compliance with court orders, parents with intellectual disabilities had their children removed more often than parents without disabilities.[261] These initial removals often led to TPR. This is especially troublesome, as parents with disabilities who are involved with the child protection system are more likely to be facing allegations of neglect than of abuse or risk of abuse.[262]

Parents of color face even more risk of experiencing discrimination in the child welfare system. As stated in the NCD reportMeeting the Unique Needs of Minorities with Disabilities, “Persons with disabilities who are also members of minorities face double discrimination and a double disadvantage in our society.”[263] The child welfare system is no exception. In 2009—according to Children’s Rights, a national child welfare advocacy organization—more than half of the children entering foster care in the United States were children of color. African American and American Indian children are more likely than other children to be reported, investigated, substantiated, and placed in foster care. Thirty-one percent of the children in foster care are African American, double the percentage of African American children in the national population. Children of color, especially African American children and often American Indian children, are more likely to have longer placements in out-of-home care, are less likely to receive comprehensive services, and are less likely to reunify with their families than white children. The rates of child welfare involvement for African American and American Indian children are more than twice those of white children.[264] While no available data look specifically at the overrepresentation of parents of color with disabilities and their families, presumably the numbers are devastatingly high.

Researchers contend that parents with psychiatric disabilities are overrepresented in the child welfare system because of the common stereotype that people with psychiatric disabilities are dangerous. According to Loran B. Kundra and Leslie B. Alexander in their article “Termination of Parental Rights Proceedings: Legal Considerations and Practical Strategies for Parents with Psychiatric Disabilities and the Practitioners Who Serve Them,” “As a result of this stereotype, it may be the case that judges and lawyers, upon hearing a diagnosis, will presume a level of dangerousness on the part of the parent involved in the termination of parental rights proceedings and will remove their children because of it.”[265] Similarly, Diane T. Marsh found “that children of women with serious mental illness frequently enter the foster care system or, less commonly, are given up for adoption; that a majority of these parents have lost custody of their children; and that custody decisions are typically made with little communication between the mother’s treatment team and child protective services.”[266] In fact, Kundra and Alexander note that a recent study found that parents with psychiatric disabilities were almost three times as likely to have child welfare involvement or child custody loss.[267] The reasons for such targeting include the presence of psychiatric disability as a ground for termination of parental rights in many states, which triggers suspicion about these parents. In addition, many parents with psychiatric disabilities receive state services and are therefore under scrutiny.

Similarly, parents with intellectual disabilities are overrepresented in the child welfare system and, once involved, face high rates of TPR. According to Chris Watkins, in his California Law Review article, “One result of the deinstitutionalization movement has been in a dramatic increase in the number of parents with intellectual or developmental disabilities. Additionally, there has been a corresponding increase in the number of parental rights termination cases involving parents with intellectual or developmental disabilities.”[268] Paul Preston of the National Center for Parents with Disabilities and Their Families contends that this “high rate of removal reflects greater discrimination and lack of appropriate services for parents with intellectual disabilities and their children. In discussing the political and social discrimination faced by parents with intellectual disabilities, experts assert that parents with intellectual disabilities are often held to a higher standard of parenting than non-disabled parents. Negative expectations and outmoded beliefs that children will eventually be maltreated and that parenting deficiencies are irremediable have contributed to children being removed from parents with intellectual disabilities despite lack of evidence for any abuse or neglect by the parent.”[269] Like parents with psychiatric disabilities, parents with intellectual disabilities often have frequent contact with professionals, including those in the government, who often end up being the source of a CPS referral. Parents with intellectual disabilities are also likely to be living in poverty.

Bias pervades the child welfare system at every step. The disparities begin with the initial report of suspected abuse or neglect, usually to the police or CPS.[270] For most parents without disabilities, the initial report often comes anonymously from a neighbor, teacher, or physician.[271] However, because parents with disabilities frequently have regular contact with service providers, such as social workers and therapists, reports of suspected abuse or neglect may come from a state professional with whom the parents have had some previous contact.[272] Anecdotal evidence suggests that CPS is likely to take allegations from state professionals more seriously, regardless of whether they are actually more valid.

Poverty plays a significant role in bringing parents with disabilities into contact with service providers who end up being the source of a CPS referral, and poverty itself is the most consistent characteristic in families in which child neglect is found.[273] Unlike people with the financial resources to buy services privately, people who live in poverty are likely to come to the attention of the state by accessing public assistance.[274] Social scientists have often examined this phenomenon—which is referred to as “overexposure bias” or “visibility bias”—in the case of race.[275] For example, “Because children from African American and Native American families are more likely to be poor, they are more likely to be exposed to mandated reporters as they turn to the public social service system for support in times of need. Problems that other families could keep private become public as a family receives TANF, seeks medical care from a public clinic, or lives in public housing…. Research has shown that exposure bias is evident at each decision point in the child welfare system.”[276] According to Ella Callow, legal program director at the National Center for Parents with Disabilities and Their Families, “While people with disabilities have been neglected by researchers examining this phenomenon, the…factors leading to overexposure bias in the African American and Native American communities are unquestionably present in the disability community. Poverty and reliance on public assistance are, unfortunately, the most common characteristic of the families with disabilities we see who are involved in the child welfare system and [are] quite often the reason they ended up there.”[277]

According to Watkins, “These reports may be tainted by the same prejudices regarding parents with disabilities as are held by many members of society.”[278] Further, once state involvement occurs, “Investigations are likely to be more probing, and investigating professionals are less likely to give these parents any benefit of the doubt.”[279]

In 2003, Phillip Swain and Nadine Cameron of the School of Social Work at the University of Melbourne revealed findings from a study that examined the experiences of parents with disabilities with the court system.[280] Swain and Cameron’s research concluded that parents with disabilities experience prejudicial or discriminatory treatment from CPS and the courts.[281] Commentators have characterized the court’s approach to child protection involving parents with disabilities as one of “risk management.”[282] A false dichotomy is established in which the children’s rights are balanced against the rights of the parents.[283]

For example, Christina,[284] who has significant physical and sensory (vision and hearing) disabilities and is the mother of three children, has been inappropriately referred to CPS on various occasions. In one instance, her daughter’s school reported maltreatment after her daughter injured herself doing summersaults. Although the CPS staff knew that Christina is hard of hearing and requires accessible relay services, they called her without the needed services, with the result that she could not effectively communicate. CPS alleged that she was being uncooperative and continued the investigation. The situation was ultimately resolved in Christina’s favor, but it is doubtful that it would have ever progressed to this level if she did not have a disability. In a similar instance of “risk management,” Cassandra,[285] a wheelchair user and mother of one, was inappropriately referred to CPS by her daughter’s pediatrician. CPS commenced an investigation. Cassandra had difficulty securing an attorney who could effectively represent her—a significant barrier for many parents, discussed later in this chapter. She eventually did find an attorney, and her daughter’s medical records refuted the allegations of neglect.

The bias that permeates the child welfare system has many causes. According to law professor Robert L. Hayman, Jr., “Neither the training nor time constraints permit many social workers to transcend biased perceptions. Moreover, under most schemes, these perceptions are enough to justify state intervention.”[286] Many states’ child welfare statutes “generally require evidence of some connection between a parent’s disability and her ability to parent; however, the level of proof required varies from state to state, and within many states, from case to case.”[287] The consequences of this bias are devastating.

In fact, children have been removed from their families even when the evidence of neglect has been refuted and the court has acknowledged the parent’s adequacy.[288] For example, in In re G.C.P., the Court of Appeals of Missouri upheld a termination order even though it acknowledged that there was no indication of intentional abuse and the alleged neglect was supported only by reference to substandard housekeeping.[289]

Parents with disabilities and their families are frequently, and often unnecessarily, referred to the child welfare system. Connie Conley-Jung and Rhoda Olkin found in a study of blind mothers that “Mothers with disabilities feel vulnerable about their parental rights and the custodial rights of parents with disabilities are frequently questioned solely on the basis of the parents’ disabilities.”[290] In fact, nearly all the parents with whom NCD spoke reported living in constant fear that they would eventually be reported because of their disability. Kathryn,[291] a new mother who is a wheelchair user and little person, told NCD that she is “always worried that some random stranger could call [CPS].” Moreover, because of concern that their daughter’s pediatrician will question their ability to parent, Kathryn and her husband, who has similar disabilities, always take a nondisabled person with them to appointments.

Jessica,[292] a wheelchair user and mother of twins, also lives in constant fear of being unnecessarily referred to the child welfare system. This fear leads her to always call her children’s pediatrician before going to the emergency room. When her children were newborns she was constantly worried about scratching them with her wedding ring when changing their diapers, not because it would cause injury but because someone would see a scratch and call CPS.

Danielle,[293] a deaf mother, feels fortunate that she has not yet been reported to CPS. However, she acknowledges that it could easily happen, which leaves her constantly in fear. Dana has witnessed many instances in which deaf parents have been inappropriately referred to CPS; she told NCD that it is very common for the child welfare system to assert that the parents and child have no language if sign language is the primary language used in the home.

This pervasive fear unquestionably affects parenting. Susan,[294] a disability activist and mother with an immune system disorder, told NCD that she hides her disability when she is relating to people who are involved with her children, because she fears being judged on her ability to care for her children. Lindsay, a mother of two children, articulates the detrimental effects of fear on parenting:

    “Some of my fears now, as my disability status and identity have shifted to include recent psychological and cognitive impairments, are, or at least seem to me, more ‘real.’ I am afraid of disclosing the extent of my brain injury (TBI) and associated multiple cognitive impairment (MCI) to fellow parents, teachers, and service providers, and have even avoided some types of medical services for fear of stigmatizing my kids or giving their father ammunition to win full custody of them. For example, I grapple with intrusive symptoms of posttraumatic stress, as well as suicidal ideation, largely alone, with much minimizing and hiding. I expend a lot of energy trying to cover memory loss. I push myself way too hard, in ways that compromise my health by promoting seizures and other ill effects, so that I can process.”[295]

This same fear leaves many parents afraid to ask for help. Jennifer,[296] a wheelchair user and mother of three children, told NCD that she is always afraid to ask for help as someone may view that as being unable to adequately care for her children and may report her to CPS.

Fear that the state will take their children is common among parents with disabilities. According to Michael Stein, internationally recognized disability expert, “Even with the accomplishment of parental tasks through different techniques, mothers with disabilities fear that mainstream society will remove their children because of prevailing misconceptions. The result is the diminishment of parental joy for otherwise able and loving parents.”[297] Overall, bias pervades the child welfare system and disparately affects parents with disabilities. As Ella Callow said, “This is the only class of children facing loss of family integrity due not to the behavior of their parents, but to their parent’s disability status and how this is perceived and understood by child welfare professionals.”[298]
Discriminatory State Statutes

Child welfare allegations of unfitness are usually grounded in parental disability coupled with other factors, such as poverty, but the system also uses parental disability as a sole validating basis for presumed unfitness. In fact, 22 years since the passage of the ADA, states continue to include disability as grounds for TPR. Such statutes are examples of the oppression ADA proponents sought to eradicate, and they run entirely counter to the letter of the law, which prohibits state and local agencies, such as those in the child welfare system, from categorically discriminating on the basis of disability.[299]

In August 2005, a study revealed that 37 states still include disability as grounds for TPR.[300] Most of these state statutes use outdated and offensive terminology, have imprecise definitions of disability, and emphasize conditions rather than behaviors.[301] Parents with disabilities who are involved with the child protection system are more likely to be facing allegations of neglect than of abuse or risk of abuse.[302]

All the states that include disability in their grounds for termination specify explicit types of disabilities for courts to consider. Currently, 36 states list psychiatric disabilities, 32 list intellectual or developmental disability, 18 list “emotional illness,” and 7 list physical disabilities as grounds for TPR.[303] Tennessee also uses the generic term “mental condition,” which can imply a psychiatric disability or an intellectual or developmental disability.[304] North Carolina is the only state that also specifies organic brain syndrome as an explicit disability to consider in TPR.[305] Eleven states use a common combination of disability types—“emotional illness, mental illness and mental deficiency”—that came directly from the Neglected Children Committee of the National Council of Juvenile Court Judges of 1976.[306] For more information on state statutes and their inclusion of disability as grounds for TPR, see Appendix B.

Law professor Robert L. Hayman, Jr., said, “If the label is not used to help, it is inevitably used to hurt.”[307] According to Elizabeth Lightfoot and Traci LaLiberte, a significant concern about the inclusion of disability in the grounds for TPR is that the mention of parental disability can shift the focus from a parent’s behavior to a parent’s condition or diagnosis.[308] No other parental conditions are listed in state statutes.[309] In fact, it is explicitly laid out in most state statutes that the condition of poverty, for instance, shall not in and of itself be considered grounds for TPR.[310] “However, old presumptions do not die easily, and presumptions of unfitness continue to subtly define the law’s approach to parents [with disabilities].”[311] Thus, as Hayman says, “The formal classification should be abolished as a basis for state interference with the parent-child relationship. The classification has no empirical foundation, and its political roots are not ones to be proud of. The classification results, meanwhile, in a schematic processing of the labeled parent’s claim to family, reducing individualized adjudications to formalities and foregone conclusions. In the end, the scheme makes us all a little less human.”[312] Lightfoot and LaLiberte note, “When a parent’s disability is explicitly included in legislation outlining the grounds for termination of parental rights, the disability can easily become the focus of a child protection case, even though the statutes do not say it can be the sole grounds for termination.”[313]

TPR based solely on parental disability clearly violates the ADA’s prohibition of decisions based on a person’s disability status.[314] The full promise of the ADA will not be achieved until DOJ, in collaboration with HHS as appropriate, actively enforces the ADA in child welfare matters and states stop denying parents with disabilities their fundamental right to create and maintain families.


https://ncd.gov/publications/2012/Sep272012/Ch5