Preview NCD's New Website in Beta

Take a look at the new beta site, an early, in-progress version at

Chapter 5: The Child Welfare System: Removal, Reunification, and Termination

Skip to Page Content

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.

Recurrent Barriers in Child Welfare Cases Involving Parents with Disabilities

This section examines barriers most often encountered by parents with disabilities when involved in the child welfare system, including barriers related to the Adoption and Safe Families Act; perceived limitations on the application of the ADA at the termination phase; bias, speculation and the “unfit parent” standard; and issues in meaningful participation and representation.

Adoption and Safe Families Act of 1997 and Its Impact on Parents with Disabilities

In November 1997, Congress passed and President Bill Clinton signed into law the Adoption and Safe Families Act (ASFA), significantly amending the Adoption Assistance and Child Welfare Act (AACWA) of 1980, which established the modern federal foster care program.[315] ASFA embodied an ideological shift from a statutory scheme that prioritized reunifying families in nearly all circumstances to one that unequivocally puts the health and safety of children first and aggressively seeks to move children through foster care to permanency in an expedited manner.[316]

While the goals of ASFA are laudable, the consequences can be devastating, especially for parents with disabilities and their children. A key provision of ASFA is the “15/22 rule,” which requires states to file a petition for TPR if a child has been in foster care for 15 of the most recent 22 months (even shorter time frames, defined by state law. if the child is an infant).[317]  While the goal of permanency is praiseworthy, research shows that many parents with disabilities find it difficult to comply within the strict timelines.

Pursuant to ASFA, states must make “reasonable efforts” to preserve a family before moving the child to an out-of-home placement and to reunify the family if a child has been removed.[318] “Reasonable efforts” are not defined in law or in federal regulations and have been interpreted in a wide variety of ways by states and the courts.[319] Unfortunately, the vagueness of this term, coupled with the unadapted services typically provided to parents with disabilities, means that the reasonable efforts requirement is not so reasonable when applied to parents with disabilities. Moreover, ASFA gives states flexibility in determining circumstances in which reasonable efforts are not required. In addition to defining specific instances, ASFA permits states to not provide reasonable efforts when “the state has determined that another reason exists that justifies not using reasonable efforts to reunify the family.”[320] Research shows that states often include disability as one reason to deny families reasonable efforts.

ASFA also reduces an agency’s focus on reunification by allowing workers to engage in concurrent two-track planning for children in out-of-home placement.[321] Although concurrent planning is not required, HHS has stated that it is “consistent with good practice.”[322] Thus, even as a social worker makes efforts to reunify a family, he or she may also plan for the failure of those efforts by paving the way for TPR and for adoption.[323] A permanency hearing to develop a permanency plan must be held within 12 months of a child’s entrance into foster care.[324] According to Theresa Glennon, law professor at Temple University, because caseworkers have been shown to hold negative perceptions of people with disabilities, they may be more likely to focus on developing cases for termination than on helping parents with disabilities reunite with their children.[325]

Glennon says, “In sum, ASFA’s emphasis on child safety, shorter placements in foster care, and permanency through adoptions places great pressure on parents with [disabilities] seeking reunification with their children and the advocates who represent them, particularly in a complex legal environment.”[326]

The Race Against the Clock: The 15/22 Rule

ASFA requires state child welfare agencies to file a petition to terminate parental rights if (1) a child has been in foster care for 15 of the most recent 22 months; (2) the child is determined to be an abandoned infant, as defined by state law; or (3) a parent has committed or been involved in murder, voluntary manslaughter, or felonious assault of one of his or her children.[327] Exceptions are allowed on a case-by-case basis if (1) a child is being cared for by a relative; (2) the state shows a compelling reason why TPR is not in the best interest of the child; or (3) the state agency has not provided the services required by the case plan to return the child to a safe home if reasonable efforts were required.[328]

In response to ASFA, all states have adopted limits to the maximum time a child can spend in foster care before termination proceedings can be initiated.[329] Typically, states have adopted the ASFA standard of 15 of the most recent 22 months in care. Some states specify shorter time limits, particularly for very young children.[330]

These austere timelines are detrimental for parents with disabilities and their families. For parents, the time lines are often challenging—if not impossible—to comply with. Alexander and Kundra found that “these timelines are often difficult to adhere to for parents who must secure adaptive equipment, secure services that are more involved than those for non-disabled parents, and, in the case of parents with psychiatric disabilities, may be impossible because of the need to seek psychiatric inpatient care and treatment at some point in the dependency process.”[331] Kundra and Alexander further articulate, “Parents with psychiatric disabilities are at a particular disadvantage with respect to the time requirement for family reunification efforts as treatment for mental health issues can sometimes require more than a year to be effective.”[332] At the same time, evaluation of specialized services to parents with intellectual disabilities and their children documents steady but slow progress.[333] Furthermore, although filing of the mandatory termination petition does not take place until the child has been in the foster care system for 15 of the previous 22 months, the decision to terminate parental rights often comes at the 12-month hearing if it is believed that sufficient progress has not been made.[334] In fact, according to Barbara J. Friesen and colleagues, there have been “cases in which, even with the court’s recognition of ongoing progress, parents with mental illnesses had their rights terminated because they were unable to meet reunification goals within the requisite timeframe.”[335]

In 2006, researchers Lenore M. McWey, Tammy L. Henderson, and Susan Tice released findings from a study that sought to (1) identify how ASFA influences foster care outcomes of cases involving parents with psychiatric disabilities; (2) examine trends in TPR decisions of parents with psychiatric disabilities; (3) explore the court’s account of how parental behaviors influenced decisions to terminate parental rights; and (4) provide implications for family therapists.[336] This study found that therapists either were not aware of the time concerns associated with ASFA or could not sufficiently treat clients within the time period.[337] The finding was demonstrated, in part, by therapists’ own recommendations to the courts, such as that the parent “needs 6–8 months of treatment before change can even begin to occur”; mother needs “at least 2 years of therapy”; “family needs at least 1 year of family therapy before returning children to the home”; and parents will need “several years of treatment.”[338]

McWey, Henderson, and Tice also found that some parents with psychiatric disabilities had their parental rights terminated because they were unable to demonstrate within the time limit mandated by ASFA that they had successfully remedied the situation that led to the child being placed in foster care.[339]

A 2002 report from the U.S. Government Accountability Office (GAO) said that child welfare agencies found it difficult to work within ASFA’s strict timelines.[340] These timelines often result in TPR for parents with disabilities. According to Joshua B. Kay, law professor at the University of Michigan, “Often, it is the timeframe of a service, rather than the nature or method of a service, that is a barrier for parents with disabilities.”[341] Statutory time periods need to be extended to reflect the needs of parents with disabilities and their children. Specifically, ASFA must be amended to fully accommodate parents with disabilities. Likewise, the child welfare system must modify policies to comply with the ADA. Although these timelines were enacted out of concern for children, how are hasty timelines, which do not take into account the needs of a subset of parents, in the best interest of children?

The Reasonableness of “Reasonable Efforts”

Pursuant to ASFA, states must make reasonable efforts to preserve families before moving a child to an out-of-home placement and to reunify the family if the child has been removed.[342] This means that child welfare agencies should provide services such as family counseling, respite care, and substance abuse treatment.

At first reading, the provision seems particularly helpful for parents, especially those with disabilities. One of the exceptions to the 15/22 rule is if the state agency has not made reasonable efforts to provide the services required by the case plan to return the child to a safe home.[343] However, a 1999 GAO report said, “According to child welfare officials in the three states visited, their agencies have so far ‘exempted few, if any, children—and are unlikely to exempt children—for this reason.’”[344]

Laws in all states, the District of Columbia, Guam, and Puerto Rico require the provision of services that will help families remedy the conditions that brought the family into the child welfare system.[345] However, the statutes in most states use a broad definition of what constitutes reasonable efforts.[346] According to Esme Noelle DeVault, “The ‘reasonable efforts’ standard is ill-defined and inconsistently applied.”[347] In fact, a 1999 GAO report notes that the term is not defined in law or in federal regulations and has been interpreted in a wide variety of ways by states and the courts.[348] This vagueness has devastating implications for parents with disabilities.

For example, DeVault says, “As applied to developmentally disabled parents…, the ‘reasonable efforts’ offered are often inadequate reunification services that fail in any meaningful way to rehabilitate the parent’s fitness. These efforts would be improved if the state were to enact formal guidelines that define with greater specificity what constitutes ‘reasonable efforts.’”[349] She goes on to say, “In many cases, reunification services are offered pro forma with the one size fits all concept. Under these circumstances, failure is projected and expected, not from the parents with the mental disability, but from the judges, social workers and service providers. Despite their efforts, parents are usually found unable to improve.”[350]

Researchers at the UPenn Collaborative on Community Inclusion reached a similar conclusion: “Although our society has afforded parents with psychiatric disabilities legal rights to receive accommodations, these rights are routinely given short shrift in the child welfare system. Courts typically determine that reasonable efforts have been made when a parent has been offered a one-size-fits-all set of parenting services. This approach does not work well for families in general, and it is especially inappropriate for parents with disabilities, whose special needs are rarely addressed.”[351] Thus, “many parents with psychiatric disabilities lose their children because they never receive meaningful help to safely care for their children. Many others lose their children based on unfounded assumptions that their disabilities make them unfit parents or on past episodes before the parent began receiving effective mental health treatment.”[352]

Neither ASFA nor most state child welfare statutes specifically require that the reasonable efforts be designed to meet the needs of parents with disabilities, despite the fact that the ADA requires child welfare agencies to provide reasonable modifications for parents with disabilities.[353] Reunification efforts are not reasonable if they do not take into account a parent’s disability—failure to do so means that the services will have little chance of success.[354] Unfortunately, the majority of case law concludes that the efforts made by states to provide individualized services to prevent people with disabilities from losing parental rights constitute reasonable efforts, even when they appear to be inadequate.[355] This is true even when the ADA requirements for modifications are raised.

Furthermore, a statutory mandate is not a guarantee that parents with disabilities will receive such services. For example, in B.S. v. Cullman, two psychologists opined that rehabilitative services might not enable the mother to successfully parent on her own.[356] Therefore, the court determined that providing services “would place an undue burden on an agency, [which was] already struggling with its duty to rehabilitate those parents and reunite those families who [could] be aided by its assistance.”[357] Thus, even in states with statutory obligations to provide services, parents with disabilities “face barriers based on what may be ambiguous or discriminatory criteria.”[358]

So ASFA’s reasonable efforts provision is not so reasonable when it is applied to parents with disabilities; in fact, it has potentially devastating consequences for them. The provision is incredibly vague and has led to child welfare agencies providing generic, one-size-fits-all services, which violates the ADA reasonable accommodation mandate. (See Chapter 9 for a discussion of appropriate adapted services.)

Fast Track: Bypassing Parents with Disabilities

In an attempt to clarify AACWA’s reasonable efforts requirement, Congress singled out a handful of circumstances in which efforts to reunite were not required.[359] This significant provision of ASFA, commonly referred to as “fast track,” allows states to bypass reasonable efforts if a parent has committed murder or voluntary manslaughter of another of his or her children; been complicit in such a murder or manslaughter, or an attempted murder or manslaughter; committed a felony assault resulting in serious bodily injury to the child or another child; or when the parent’s rights to a sibling of the child have been terminated involuntarily.[360] Additionally, under ASFA, reasonable efforts to reunite children with their parents are not required if “the parent has subjected the child to aggravated circumstances (as defined in state law, which definition may include but need not be limited to abandonment, torture, chronic abuse, and sexual abuse).”[361] In such cases, states are required to hold a permanency hearing within 30 days and to make reasonable efforts to place the child for adoption, with a legal guardian, or in another acceptable permanent place.[362]

According to Kathleen S. Bean, law professor at Brandeis School of Law, University of Louisville, “The impact on the health and safety of children when reunification efforts are not required can be tremendous. It ends the state’s responsibility to provide services; it ends the duty to facilitate and encourage visitation; and it almost inevitably places the parent just steps away from termination of parental rights. Without reasonable efforts, the opportunity to address the problems that contributed to the child’s removal and to work toward reunification to avoid the damage from disrupting the parent-child relationship is remote.”[363]

The fast-track provision has many detrimental consequences for parents with disabilities and their children. For example, states are not required to provide reasonable efforts if the parent’s right to a sibling of the child have been terminated involuntarily.[364] Anecdotal evidence suggests that this ground for bypass may disparately affect parents with disabilities because the previous loss of a child might have been caused by the state’s failure to provide proper services.

Equally detrimental is the “aggravated circumstances” portion of the fast-track provision. Bean says, “The vagueness of the aggravated circumstances exception contributes to the likelihood that life-altering decisions will be arbitrary, capricious, and discriminatory. The phrase invites inconsistent, unpredictable decisions about when a state should expend efforts to reunite a child with his or her parents.”[365] This vagueness unquestionably affects parents with disabilities, particularly because some states have expressly included parental disability as an “aggravated circumstance.” That is, some state statutes explicitly state that when a parent has a disability—intellectual or psychiatric—a court may dispense with reunification services if it finds that the parent is not likely to benefit from them.[366] Such bypass provisions exist in six states (Alabama, Alaska, Arizona, California, North Dakota, and Utah) as well as Puerto Rico.[367] In these states, the child welfare system is not required to provide services if the court finds by clear and convincing evidence that the parent has a psychiatric or intellectual disability “that renders him or her incapable of utilizing services.”[368] Watkins says, “Thus, a parent’s disability often serves as a dual liability: Her disability leads to the initial intervention and then precludes her from an opportunity to regain custody of her child.”[369]

Lorena’s story demonstrates just how devastating bypass statutes are for parents with disabilities and their children.[370] Lorena, an older Latina mother in California who has autism, has raised one daughter to adulthood. Her daughters Sasha and Marie—ages 12 and 14, respectively—still live with her. Lorena was unable to work for several years, and between her autism and Sasha’s autism, the cost of treatment and transportation for medical, educational, and therapeutic care resulted in their becoming homeless.

Lorena contacted social services for help. They convinced her to place Marie and Sasha in foster care temporarily. Because of Sasha’s disability, she was placed separately from her big sister in a special needs foster care home. Lorena was very upset that her children were separated. Her case moved from voluntary to involuntary, and a public defender was appointed. Lorena became alarmed when she saw Sasha’s deteriorating emotional state and lack of personal hygiene: long, jagged, dirty nails; unwashed hair; inflamed and infected gums. Child welfare workers reprimanded her for taking pictures of her daughter’s condition and sending them to county counsel representing social services. When Lorena became overwhelmed and upset during a visit with Sasha because Marie was not brought, as had been promised, the police were called to intervene. They found no safety issue.

Child welfare then required Lorena to submit to two psychological evaluations. If these evaluations were interpreted to show that Lorena was unlikely to benefit from parenting services, she could be bypassed (denied the due process rights that a nondisabled parent receives). Lorena “failed” the tests and was deemed bypassed, ending her limited services and visitation. Throughout this process, Lorena felt that her public defender was unmotivated to help. The attorney never raised the ADA, even to argue against bypass; was not willing to accommodate Lorena’s communication needs; was dismissive of motherly concerns about her vulnerable daughter’s care; and refused to work with TLG. Ultimately, however, the children’s attorney became interested in working with TLG’s legal program. Together, they located a psychiatrist affiliated with a local university disability program who had research and clinical familiarity with the subject. Despite the bypass, the local child welfare agency agreed to fund a proper assessment. The matter is ongoing.

ASFA’s fast-track provision is incredibly disconcerting and has led to states denying many parents the due process guaranteed to nondisabled parents before they lose their constitutionally protected parenting rights. Congress must amend ASFA to protect the rights of parents with disabilities and their families. Further, this provision undoubtedly conflicts with Title II of the ADA, which prohibits public entities, such as those in the child welfare system, from denying people with disabilities access to services and programs on the sole basis of disability.[371] DOJ, in collaboration with HHS as appropriate, must actively enforce these mandates.

Concurrent Planning: Just How Concurrent Is It?

Concurrent planning is another significant component of ASFA. Although it is optional, HHS states that it is “consistent with good practice.”[372] Concurrent planning involves considering all reasonable options for permanency at the earliest possible point following a child’s entry into foster care and concurrently pursuing those that will best serve the child’s needs. While the primary plan should typically be reunification, in concurrent planning, an alternative permanency goal is pursued at the same time.[373]

Some critics have asserted that the early development of an alternative permanency plan conflicts with agencies’ pursuit of family reunification.[374] Others have raised concerns that concurrent planning practices may undermine family reunification efforts.[375] Fred Wulczyn of the University of Chicago notes that concurrent planning may lead caseworkers to work less vigorously toward family reunification.[376] Another concern is that birth parents may have difficulty working with caseworkers when they know that alternative permanency options are being actively pursued.[377] In fact, findings from a recent survey (posted on the Child Welfare Information Gateway Web site, a service of HHS Children’s Bureau) reveal that CPS workers themselves believe that concurrent planning “can cause anxiety for birth and/or foster adoptive parents and impede reunification efforts.”[378]

It is not clear how many states have formal concurrent planning policies, but the Child Welfare Information Gateway indicates that some states mandate concurrent planning in cases with “poor prognosis indicators.”[379] The most commonly used poor progress indicator is this one: “Parent has significant, protracted, and untreated mental health issues and parent’s rights to another child have been involuntarily terminated.”[380]

Concurrent planning can negatively affect parents with disabilities and their children. Jude T. Pannell, in his Drake Law Review article, says, “Some caseworkers fail to make the necessary efforts to preserve and reunite families because sanism leads them to believe any efforts they make are futile and mentally disabled parents cannot become capable of parenting. The taint of such prejudice may color the caseworker’s efforts in the concurrent planning phase, making TPR inevitable instead of merely possible. A caseworker is less likely to recommend helpful services if he or she is convinced the parent will remain unstable, dangerous, and violent regardless of those services.”[381] He also says, “The tight timeframes and concurrent planning called for by the ASFA make it essential for parents to quickly rehabilitate themselves. Parents facing TPR rely on their state caseworkers to guide them through the process, but the same parents understand the caseworker is also evaluating them for fitness as parents.”[382] As a result of this situation, parents with psychiatric disabilities “may be fearful of alienating their caseworkers by being too demanding; may fear being stigmatized by their caseworker if they are seen as mentally ill; or may not be ready to acknowledge the presence of mental illness.”[383]

According to the Adoption and Foster Care Analysis and Reporting System (AFCARS), reunification was the stated permanency planning goal for only 49 percent of children in foster care between 2006 and 2009.[384] It would be interesting to know how many of those children have parents with disabilities.

Perceived Limits on Application of the Americans with Disabilities Act at Termination Phase

Despite the ADA’s obvious application to the child welfare system, state courts have resisted ADA defenses in TPR cases. The case law concerning the ADA and parental rights has overwhelmingly favored states and rejected the claims of parents with disabilities. Many courts have held that the ADA may not be raised as a defense to TPR proceedings for a variety of reasons.[385] Some courts have refused to apply the ADA because TPR proceedings are not a “service, program or activity” within the meaning of the ADA.[386] Others have held that the ADA does not apply to TPR proceedings because the court’s jurisdiction is limited to interpreting the state child welfare law (i.e., determining the best interest of the child or reasonable efforts) rather than conducting “an open-ended inquiry into how the parents might respond to alternative services and why those services have not been provided.”[387] Finally, some courts have concluded that the ADA provides no defense to TPR proceedings because Title II contemplates only affirmative action on the part of the injured party rather than defenses against a legal action by a public entity.[388]

Not all courts have held that the ADA is inapplicable to TPR proceedings. Some courts have held that the law does provide a defense in such proceedings,[389] and others have applied the ADA in TPR proceedings without specifically ruling on its applicability.[390] Overwhelmingly, however, those courts have failed to appropriately apply the ADA, concluding that sufficient reasonable modifications in services were made to accommodate parents’ disabilities and, therefore, no ADA violations occurred.[391]

The Supreme Court has not ruled on whether state court proceedings such as TPR proceedings constitute “state activity” or “service.”[392] In October 2006, a certiorari petition was filed in the Supreme Court seeking review of a Rhode Island court’s decision that a TPR proceeding “does not constitute the sort of service, program or activity that would be governed by the dictates of the ADA.”[393] The question presented was “whether Title II applies to termination of parental rights proceedings initiated by state agencies and prosecuted in state courts.”[394] The petition noted that the Rhode Island decision is inconsistent with the plain language of the ADA and with the Supreme Court’s ruling in Pennsylvania Dep’t of Corrections v. Yeskey,[395] which made clear that the ADA makes no exceptions for activities that implicate particularly strong state interests.[396] This petition was denied, and conflict still exists on these issues among state courts.

The ADA was enacted to ensure the rights of all people with disabilities, including parents with disabilities. DOJ, and HHS as appropriate, must hold state courts and the entire child welfare system accountable. Furthermore, given the patchwork of decisions concerning the ADA and the child welfare system, the Supreme Court should address this issue, holding that the ADA does in fact apply. Until the mandates of the ADA are fully recognized and complied with, parents with disabilities and their children will continue to be torn apart unnecessarily.

Bias, Speculation, and the “Unfit Parent” Standard

Beginning with the investigation into a report of child maltreatment, bias pervades the child welfare system at every step. TPR generally hinges on “unfitness.”[397] Most termination statutes identify various factors that the courts should consider when determining parental unfitness.[398] Although the factors are inexact, states typically focus on neglect and abuse.[399] Moreover, these statutes almost unvaryingly include disability, often psychiatric and intellectual, as factors for courts to consider.[400] Watkins says, “Although the statutes generally require evidence of some connection between a parent’s disability and her ability to parent, the level of proof required varies from state to state and, within many states, from case to case.”[401] Even in states that do not list disability as a ground for termination, courts have largely included it as a factor to consider in termination proceedings, usually under the rubric of “unfitness” or “incapacity.”[402] While all parents are presumed “fit” until the state proves otherwise,[403] “the presumption that children’s best interests are in remaining with their natural parents who wish to raise them” is frequently reversed in practice for parents with disabilities. Instead, “they must prove their competence in the face of myriad presumptions of inadequacy.”[404]

Presumptions of unfitness are most obvious in cases where the parent has never actually had custody of the child. Intervention in these cases often takes place before or shortly after birth, even though the parents have done nothing to harm their child.[405] Such cases are quite common, and “parents in these cases often do not contest removal or termination, perhaps because no strong bond has formed between parent and child, or perhaps because of pressure from the social service system.”[406] Also, the oppression most people with disabilities experience in their lifetimes can affect their ability to self-advocate.

In 2010, a Missouri couple experienced the tragic consequences of the presumption of unfitness when their two-day-old daughter was taken into custody by the state because the both parents were blind.[407] This removal was not based on allegations of abuse, just a fear that the parents would be unable to care for their daughter. Because the couple was presumed unfit, for nearly two months they were permitted to visit their daughter only two to three times a week, for just an hour at a time, with a foster parent monitoring.[408] Questions arose within hours of their daughter’s birth, after awkward first attempts at breast-feeding—something many new mothers experience.[409] Following this incident, a nurse wrote on a chart, “The child is without proper custody, support or care due to both of parents being blind and they do not have specialized training to assist them.”[410] “Her words set into motion the state mechanisms intended to protect children from physical or sexual abuse, unsanitary conditions, neglect, or absence of basic needs being met.”[411] A social worker from the state came by the mother’s hospital room and asked her a variety of questions about how they would care for their daughter.[412] The social worker then told the parents they would need 24-hour care for their daughter, which the parents replied they could not afford and did not need.[413] Nonetheless, their daughter was taken into foster care, and a 57-day battle ensued before they were finally reunited with her.[414] This family’s story shows the devastation that can occur when there is a presumption of unfitness; the parents were presumed to be unfit and had to fight to prove their fitness to be parents.

Tyler and Brandy also faced the consequences of the presumption of unfitness.[415] A young Native American couple with psychosocial (Tyler) and intellectual (Brandy) disabilities, had a new baby daughter, Pia. Brandy has a caseworker and receives services for her disability through the Department of Rehabilitation. Brandy and Tyler’s capacity to parent was not questioned until Pia came home from the hospital, at which point Brandy’s caseworker and a social worker from child welfare explained to her that a case would be opened based on parental disability. After two weeks of child welfare visits, Brandy became upset during a visit and left the house to take a break. She was accused of leaving the nonmobile Pia lying “unattended,” although Tyler and the workers were in the living room. This incident and the parents’ disabilities were considered grounds for removal. Brandy and Tyler were provided with neither evaluation nor parenting services.

The family contacted TLG’s legal program, which contacted the child welfare agency, attorneys on both sides, and the family’s tribe, notifying them of the need to consider the ADA and provide accommodated services. CPS argued that the lack of such services excused compliance. The director of TLG’s legal program cold-called universities and located a psychologist with the proper qualifications to provide an accommodated parenting assessment, which CPS then refused to fund. The psychologist herself found funding for and completed the assessment, making formal recommendations to child welfare and the court. The recommendations included the following accommodated reunification services: “increased opportunity for parenting time with Pia in the natural setting of their home, starting with two hours at a time several times per week with a support person who is trained to teach parenting skills and is sensitive to accommodations necessary when working with developmentally disabled parents.” The psychologist also said, “A professional provider independent of the state should evaluate Brandy and Tyler’s progress or lack thereof on parenting weaknesses periodically. This provider should be one source of input to the court and child welfare regarding expanding or limiting parenting time.” The child welfare agency refused to implement or fund any services.

The family filed a civil rights complaint with DOJ, which transferred it to HHS. The HHS investigation found no discrimination and did not discuss the postevaluation recommendations. After the issuance of the ADA Amendments Act (ADAAA) regulations, the family refiled with DOJ, hoping for a new investigation. This has not occurred. When notified of the complaint, the judge said, “No one around here is afraid of a civil rights investigation.” The family members who supported Brandy and Tyler in filing the complaint were excluded from all future courtroom proceedings. Pia’s tribe (unfamiliar with the ADA’s application in child welfare) formulaically endorsed the child welfare department’s reunification efforts as sufficient and has provided no support to the parents’ efforts to secure proper services. The family recently participated in a jury trial (their state is one of the few that uses jury trials in child welfare matters). The jury found that child welfare had not provided proper services and that termination of parental rights was not appropriate. The child welfare agency has been ordered to work with the family to provide proper services. After the trial, some members of the jury cried and hugged the father, whose own traumatic childhood as a disabled foster child had been presented on direct examination. This matter is still ongoing. Pia has been out of her family’s care for several years; whatever the ultimate resolution of this case, someone will lose.

The child welfare system is fraught with bias and speculation concerning the parenting abilities of people with disabilities. The impact of this situation on the best interests of children is rarely addressed but has devastating consequences, as Jeanne’s story illustrates.[416] Jeanne, a young Native American mother with intellectual disabilities, lives in a supported living facility in Florida with her five-year-old daughter, Leya. On the basis of Jeanne’s disability, she and Leya have had assigned social workers and an open child welfare case since Leya’s birth and have received parent-child intervention services.

With Leya starting kindergarten, social workers began questioning how an intellectually disabled mother could promote the child’s well-being. Jeanne was assessed with IQ testing, interviewing, and limited observation. On the basis of the results, it was speculated that by middle school, Jeanne would be unable to help Leya with homework and would possibly have trouble retaining parental authority. Social workers, therefore, decided to establish for Leya a relationship with her estranged father. She had never lived with him, and her mother had no relationship with him, but he did not have a disability. The goal: to eventually switch custody to the father.

Jeanne was opposed and anxious but acquiesced. However, after a number of visits, Jeanne told the social workers that she did not want them to send Leya to see her father any longer. She told them that Leya was scared to go there—she was regressing, fearful of sleeping, wetting herself after having been potty-trained for years, and she came home from visits upset. The social workers dismissed her concerns and continued to insist that Leya spend time with her father. Finally, after Leya’s return from a visit, Jeanne was giving her a bath and observed evidence of sexual abuse. She contacted the police and the social workers. Leya was given medical treatment, the police opened an investigation, and the father was eventually convicted of, and jailed for, child sexual abuse.

And yet local child welfare remained convinced that Jeanne could not parent Leya. A personal attendant helped Jeanne contact TLG’s legal program, which referred her to the local Indian legal services. There, a devoted attorney persuaded child welfare to close the case. Jeanne fled the area with her child, fearing the Leya might again be harmed by arbitrary actions. She has not contacted anyone involved in the case.

Presumption of unfitness is a common problem for parents with psychiatric disabilities. Indeed, according to Susan Stefan, a highly recognized disability law attorney, there are “a number of false stereotypes reflected in lower court decisions and termination filings that also permeate the attitudes of child protective services workers and the agencies where they operate: psychiatric disability and symptoms are permanent and unchanging; requiring assistance means the person is unfit to parent; being disrespectful to the social worker means unfitness to parent; and attempting suicide means unfitness to parent.”[417] In essence, “the social stigma of being a parent with a mental disability, generalized statistical data, age-old stereotypes, and horrific news stories may affect court determinations about a parent’s ability to raise a child based on their condition instead of their conduct.”[418]

Lightfoot, Hill, and LaLiberte note, “Parents with disabilities face social stereotypes and prejudicial presumptions that they will inevitably maltreat their children or put them at risk from others, or that they have irremediable parenting deficiencies that put their children at risk and risk their developmental outcomes.”[419] In fact, many child welfare practices specify that parental disability is a high risk for abuse, so parents with disabilities often experience more scrutiny from child protective services.[420] For example, NCANDS, a federally sponsored data collection effort that tracks the volume and nature of child maltreatment reporting each year in the United States, considers parental disability a risk factor. Presumption of unfitness of parents with disabilities applies equally to the courts. “When courts allow presumptions of inadequacy to replace individual inquiry, they erect insurmountable hurdles for parents [with disabilities].”[421] Undoubtedly, this unfortunate presumption is a result of attitudinal bias, which is still prevalent. “Attitudinal bias leads to speculation by neighbors, family members, and medical personnel that a parent with a disability cannot be a safe parent. These are the individuals most likely to report a parent with a disability to a child welfare agency for no reason other than the disability, thus starting the family’s dependency involvement and often leading to termination of parental rights.”[422]

The child welfare system must make significant changes in the way it serves, and even views, parents with disabilities and their children. Parental disability must not be considered a “risk factor.” Moreover, the ADA forbids the child welfare system from presuming that parents with disabilities are unfit.

Issues in Meaningful Participation and Representation

Once involved with child welfare services and facing TPR, parents with disabilities face numerous and significant obstacles to meaningful participation and representation.

Pursuant to Title II of the ADA, child welfare agencies, including the courts, must accommodate parents with disabilities and ensure that they are guaranteed meaningful participation. Nonetheless, Callow, Buckland, and Jones note, “Because of inaccessible, inappropriate or non-existent services, parents with disabilities are often prevented from meaningful participation in evaluations, mediations, case plan services and court hearings.”[423] A variety of accommodations and modifications, as required by the ADA, can ensure that parents with disabilities have meaningful participation in the process. Examples of accommodations for parents at hearings and meetings include phone contact, email, or brailled notices of hearings and meetings to blind parents; meeting or hearing rooms that parents with a physical disability can access and use with their equipment; computer-assisted real-time translation (CART) or sign language interpreters so deaf and hard of hearing parents can follow proceedings; meetings held at a time of day when a parent with psychiatric disabilities is least impaired by psychotropic medications; allowing an advocate to accompany a parent with intellectual disabilities to help him or her meaningfully participate in the proceedings.[424]

Obtaining legal representation is a significant barrier for many parents facing TPR. In Lassiter v. Department of Social Services,[425] the Supreme Court held that the due process clause of the 14th Amendment does not automatically provide the right to counsel to indigent parents facing TPR. Instead, the Court held that courts had the responsibility to determine, on a case-by-case basis, whether the facts of the particular case created a federal constitutional right to counsel. However, the Court did note that “a wise public policy . . . may require that higher standards be adopted than those minimally tolerable under the Constitution” and that “informed opinion has clearly come to hold that an indigent parent is entitled to the assistance of appointed counsel not only in parental termination proceedings, but in dependency and neglect proceedings as well.” Since the Lassiter decision, states have responded in various ways to the mandate to provide legal counsel to indigent parents.[426] A national survey revealed that in at least 12 states, parents do not have an absolute statutory right to counsel after the initiation of child protection proceedings against them.[427] In at least six states, parents do not have an absolute statutory right to counsel in TPR hearings.[428] And in many states, the right is governed by statute and not protected by constitutional principles.[429]

In August 2006, recognizing the importance of representation in dependency cases, the American Bar Association (ABA) House of Delegates unanimously passed a resolution endorsing a civil right to counsel in cases related to basic human needs.[430] The basic human needs identified in this resolution as most critical for low-income persons and families include shelter, sustenance, safety, health, and child custody.[431] Moreover, “This resolution focuses the right on low-income persons but gives each jurisdiction the flexibility to determine who should be considered to fit into that category.”[432] In fact, according to the ABA, the association’s “long history of examining this issue has led it to conclude that the risk of error when indigent parent-defendants are not represented in such matters is so great that fair and equal access to justice requires the appointment of counsel.”[433] The ABA states that “despite the relaxed evidentiary standards in abuse and neglect proceedings, most unrepresented parents cannot perform the advocacy functions—including investigating facts, making an orderly factual presentation, and cross-examining witnesses—that are required. Cases throughout the country demonstrate that the need for and manner in which evidence must be presented remains beyond the understanding of many indigent parent-defendants.”[434] Further, “not only are indigent parent-defendants ill-equipped to defend their fundamental right to parent, but there is a high probability that whether they are represented by counsel will be outcome-determinative.”[435]

Despite the significance of having representation during dependency matters, indigent parents often experience barriers to securing affordable and effective representation. For parents with disabilities, securing representation is even more challenging. Many attorneys lack the skills and experience to meet the needs of parents with disabilities. Parents with disabilities are often represented by court-appointed legal representatives who typically have excessive caseloads and little if any training in disability.[436] The parents “may not receive adequate explanations of proceedings or the help they need in order to be able to articulate their wishes and respond to the evidence filed in court. Such legal representatives may not appreciate the need for explanations to be couched in language that parents can understand. Moreover, legal representatives may be unable—if not unwilling—to appreciate the parents’ commitment to caring for their children.”[437] In fact, McConnell and Llewellyn “found that among the thirty lawyers they interviewed there was substantial agreement that these parents require more time in such cases—time that is rarely available and for which there is no extra remuneration. The lawyers explained that it is very difficult to determine whether parents with intellectual disability adequately understand the nature of court proceedings, the evidence and the legal strategy proposed. It was therefore thought very difficult to not only obtain reliable instructions—that is, to know what the parent really wants his or her legal representative to do—but also to thoroughly scrutinize the evidence, given that many parents have poor literacy skills.”[438]

Callow, Buckland, and Jones have found a “failure of the bar to rise to the occasion and zealously work to win on evidence in these cases involving parents with diverse disabilities. Evidence is not created to defend parents, such as adapted baby care evaluation reports. Evidence is not presented, such as failure to present the court with evidence of adaptive equipment that will enable a parent to care for a child or tackle emergency situations (such as bed-shaking smoke alarms for parents who are deaf). Finally, evidence is not challenged, as in counsel failing to challenge a biased/unadapted parenting evaluation that recommends termination of rights or a switch in custody from a parent with a disability.”[439]

Hayman says, “The parents’ advocate is not immune to the biases that affect legislators, administrators, and judges.”[440]

In sum, parents with disabilities regularly encounter a dearth of accessible, appropriate services. This prevents them from meaningful participation in evaluations, mediations, case plan services, and court hearings. Furthermore, a parent’s right to an attorney (in some states), the right to cross-examine witnesses, and the right to present expert testimony to contradict or clarify testimony from the state’s expert is unattainable for many parents with disabilities. Instead, they are appointed attorneys who may have no knowledge of disability and often fail to understand the impact of disability on parenting capacity.

Teri L. Mosier, a deaf attorney, said “Each day in courtrooms across the United States, a recurring drama unfolds. Parents who want to maintain a relationship with their child will be told they cannot because, in the state’s view, they are unfit beyond redemption. They will be told that the companionship, custody and care of their child will be forever denied to them. They will no longer have the right to participate in their child’s upbringing, or even to visit the child. The child will permanently lose the connection to his or her natural family. If the child is not subsequently adopted, that child will forever remain a judicially mandated orphan.”[441] For parents with disabilities, this nightmare is compounded by significant barriers to meaningful participation and representation.

Given their expertise in representing people with disabilities, the P&A system must make parenting rights a priority. Similarly, child welfare agencies, including the courts, must fully comply with the ADA. DOJ, in collaboration with HHS as appropriate, must ensure that parents with disabilities are treated fairly and lawfully.

The Impact on Children

“No matter where they live in the world, no matter what they eat for dinner, no matter where they go to school, there is one common thread you can find in every child; they expect to go to bed and wake up with the same family. In almost every situation, children thrive most with their natural families.[442] ‘When family integrity is broken or weakened by state intrusion, [the child’s] needs are thwarted and . . . [t]he effect on the child’s developmental progress is invariably detrimental.’[443] Children placed in foster care are at risk for more behavioral, psychological, developmental and academic problems.”[444]

Children are removed from parents with disabilities with startling frequency. TPR is undoubtedly traumatic for parents with disabilities, but what is its impact on children? Is removing children from their home always truly in their best interest?

Nearly every child who is removed from a parent with a disability experiences some trauma over the separation. In their article in the Texas Journal of Civil Liberties and Civil Rights, Callow, Buckland, and Jones said, “Psychology and science have documented a much clearer picture of the severe emotional and psychological damage infants and young children experience when separated from their primary caregivers. In fact, arguably the most significant issue for a child’s development is now known to be a secure attachment to a sensitive, responsive, and reliable caregiver.”[445]

When children are removed from their parents, their experiences go through specific phases. Callow, Buckland, and Jones articulate: “The child will first express protest and do everything it can to get back to the mother or other caregiver. The next phase is despair as the child begins to fear it will not be reunited with the mother or other caregiver. Finally, the child will experience detachment, when it gives up hope. The pain may be so great that it loses hope of ever having that security and love again.”[446]

This process has significant detrimental effects. The children often experience “pathological attachments to the old caregiver if reunited or toward new caregivers during separations. Insecure attachment; the more severe disorganized attachment, in which a child wants but cannot bring itself to seek the soothing and comfort of a caregiver; and reactive attachment disorder, which is mentally and emotionally disabling, are all in the spectrum of predictable outcomes from traumatic and/or repeated separations.”[447] The long-term results are even more devastating: “Traumatic and/or repeated separations from caregivers place children at an increased risk of conduct disturbances, disruptive behavioral problems, attention disorders, and mood disorders. Children who are denied secure attachment due to separation are less able to cope with psychological trauma, self-regulate their behavior, handle social interactions, and formulate positive self-esteem and self-reliance.”[448]

Social science research demonstrates the harm of taking children out of their families and placing them in foster care. A matched study of drug-exposed babies, which compared newborns placed in foster care with newborns allowed to stay with their parents, showed that “at six months of age, the infants left in foster care were significantly less likely to reach, roll over, or sit up than those left with their mothers.”[449] Many child development theorists and practitioners argue that despite the need for permanence, children are harmed by TPR, and “severing the relationship with a biological parent is deeply traumatic, even when that parent has been neglectful.”[450] Substantial evidence demonstrates children in foster care benefit from contact with their parent “in terms of greater emotional security and self-esteem and improved ability to form relationships.”[451]

Despite extensive evidence regarding the danger of removal and multiple placements for young children, such procedures are still the standard for children involved in the dependency process. For parents with disabilities, removal and reunification is more common than maintenance and services with the children in the home.[452] After the removal, foster care brings its own set of problems. To begin, removal of a child most often means many foster care placements for the child. For example, in Los Angeles, which has the nation’s largest dependency system, 24.3 percent of foster children less than one year old, 33.5 percent of children aged one through two, and 38.8 percent of children aged three through five experience three or more caretakers in a 13- to 23-month stay in foster care.[453] Throughout the country, most children remain in foster care for a substantial length of time after TPR, while an adoptive home is sought and finalized. Recent data reveal that “there are currently half a million children in foster care, with twenty percent of these children having remained there for five years or longer.”[454] The Congressional Coalition on Adoption Institute reports that more than 65,000 children in foster care in the United States are placed in institutions or group homes, not in traditional foster homes.[455]


The current economic condition is significantly affecting the child welfare system and most important, the children involved. Poverty is a factor in the increase in the number of children placed in foster care. According to Deborah Paruch, law professor at the University of Detroit, “The United States has approximately fourteen million children living at or below the poverty level, which is the highest child poverty rate among all industrialized nations.”[456] As the number of children in poverty and, in turn, in the foster care system increases, so do the caseloads of social workers, which limits “their ability to visit children, assess safety, and respond appropriately to the needs of the children and their families,” and in turn contributes to longer stays in foster care.[457] Moreover, states continue to face significant budget deficits and are slashing child welfare funding.[458] Paruch says, “Such a sequence of Catch-22s is clearly not in the best interest of children, their families, or the professionals charged with their oversight.”[459]

Being placed in foster care significantly affects children. Children raised in foster care end up with more mental health issues, lower employment rates, less insurance coverage, and a higher rate of homelessness than the rest of the population.[460] Attorney Alexis Collentine says, “The foster care system is meant to offer security to children, but it often does the opposite. While there are many excellent foster parents, there is also abuse of children in care by both foster parents and other foster children. A national report on child fatalities found that a child in foster care is twice as likely to die from abuse as is a child in the general population of children. New Jersey parents whose children were removed due to inadequate housing sued because their children returned from foster care with clear signs of physical abuse. Long stints in foster care often involve moving between multiple foster homes, with children experiencing disruptions in schooling and relationships. These constant changes make it difficult to develop and maintain connections that are crucial to a child’s growth.”[461] Children in foster care are twice as likely to be killed, two to four times more likely to be sexually abused, and three times more likely to be physically abused.[462] In fact, according to a recent study conducted by Joseph Doyle, an economics professor at MIT who studies social policy, “Children on the margin of foster care placement have better employment, delinquency, and teen motherhood outcomes when they remain at home.”[463] According to Gary Stangler, executive director of the Jim Casey Youth Opportunities Initiative, a foundation for foster teens, this study “confirms what experience and observation tell us: Kids who can remain in their homes do better than in foster care.”[464]

Despite such significant problems, foster care remains a reality for many children. Reunifications have declined, dropping steadily from 60 percent in 1998 to 53 percent in 2006.[465] Furthermore, while adoptions of youth in foster care increased between 1998 and 2006, more youth aged out of care unadopted between 1998 and 2006.[466]

Bobby’s story illustrates the trauma endured by children when a family is wrongfully separated.[467] In Kentucky, Louise, a grandmother in her early 60s, has arthritis and uses a walker. She has had custody of her two-year-old grandson, Bobby, since his birth. When Bobby’s mother was arrested, she was asked if she had any children. She explained that her son lived with her mother. Social workers came to Louise’s house and explained that they were removing Bobby but he could stay three more weeks, until his third birthday, since there was no immediate need for removal. The social worker added that it is “textbook” that Bobby would be better off with a young, healthy family than a grandmother who is “old and handicapped.”

Louise did her best to explain the unexplainable to Bobby—that child welfare was taking him and she didn’t know for sure when he could come home. Bobby was removed just after he turned three, and he engaged in developmentally appropriate protest for an extended period. The social worker viewed this as pathological; she repeatedly physically dragged Bobby away from Louise at the end of visitations, threatening to end contact if he did not “behave.” Eventually, she acted on her threat: Citing how “upsetting” visitations were and Louise’s poor choice in feeding him candy on a visitation (she brought a marshmallow “Peep” to an Easter visitation) the social worker severely curtailed the visits.

At that point, Bobby became despairing and detached quite quickly. He refused to eat, and when he did eat, he vomited. Child welfare sent him for barium treatments to see if he was physically sick; he wasn’t. He was then hospitalized for an injury sustained in foster care. Louise was not allowed to visit, and his foster parents chose not to. Bobby spent his hospitalization alone in a crib with a top to prevent him from getting out, surrounded by IVs and other invasive equipment. Bobby was then labeled as “willful” and considered a “high-needs, difficult child.” This label was used as another reason not to return him to Louise. Bobby was eventually adopted; thankfully, the adoptive parents kept some contact with Louise. Her knowledge of his foster care history helps Bobby’s adoptive parents understand the psychiatric work he requires to deal with his reactive attachment disorder, claustrophobia, and ongoing nightmares.

Efforts to move the court to acknowledge the discrimination and its effects met with complete truculence. The trial judge stated from the bench, “For the record, disability has nothing to do with this case.”

The detrimental effects of spending long periods in foster care have been well documented. Watkins says, “Less is known about how children are affected by the termination of their relationship with their parents. Parental rights termination in large numbers is a relatively new phenomenon, and little research has been done with the children affected. However, one study indicates that adopted children cut off completely from their biological parents often experience a sense of profound deprivation.”[468] Another study found that the children of parents with intellectual disabilities whose rights were terminated “experienced a deep sense of loss. Often the bond between the parent and child is especially strong. There is also the potential for a negative impact on the child’s self-esteem and identity. Where parental rights are involuntarily terminated due to some ‘defect’ in the parent, the child must either disconnect from the parent and lose part of his identity or maintain identification with the family and the concomitant identification with the defect, resulting in injury to his self-esteem. In addition, leading to less permanency rather than more, parental rights may be terminated without having an adoptive family ready to take the child. Children in this situation have been termed ‘legal orphans’ because they have no connection to a family, neither adoptive nor biological.”[469]

Such a child may continue to live with various foster parents even though he or she is legally free and available for a permanent placement. This is of special concern when the children themselves have disabilities. Children with disabilities have lower rates of adoption and, once adopted, have higher rates of disruption (the termination of an adoption proceeding before it is legally finalized).[470] This is noteworthy because parents with intellectual disabilities are more likely to have children with intellectual disabilities.[471] Thus, high rates of termination for parents with intellectual disabilities lead to more children with disabilities entering the adoption pool, where they have a strong likelihood of remaining orphans.

Thus, research shows that children experience countless detrimental consequences when they are removed from their home, whether temporarily or permanently. Watkins says, “Of course, each situation is unique; thus, there will be times when children are better off having no relationship with their biological parents. As a result, each child’s case should be individually scrutinized, avoiding presumption and stereotype based upon the parent’s status if the child’s best interest is to be served.”[472]


Parents with disabilities face multiple layers of discrimination from the moment they enter the child welfare system. Parents with disabilities, particularly intellectual or psychiatric disabilities, face statutes that allow the state to presume unfitness solely on the basis of their disability and to use the disability to justify intervention into the family and TPR. Moreover, while some state termination statutes require evidence of a link between disability and detriment to the child before TPR, the courts rarely enforce this requirement. Biased beliefs about the pathology of people with disabilities are assumed to hold true for all parents with disabilities. Additionally, parents with disabilities encounter significant barriers to meaningful participation and representation in their own legal cases. “Intervention from state social service agencies and dissolution of the family is often the final blow to parents already struggling under the accumulating impact of stressful and disempowered lives with few choices and fewer opportunities.”[473]

While parents with disabilities are especially affected by issues discussed here—historic oppression, current bias, denial of ADA-protected rights to accommodation and inclusion, and discriminatory statutes—they are not alone. Indeed, in no community is “the welfare of children…served by breaking up families based on fear and stereotype. If we are truly concerned about the welfare of children, we should invest more money and energy in preventive services for families rather than in parental rights termination and foster care. Our conception of the parent or parents as individuals, standing alone, without help from the broader community, does children no service.”[474]

Accordingly, several steps must be immediately taken to eradicate the pervasive discrimination that parents with disabilities and their children regularly encounter. States must eliminate from their statutes disability as grounds for TPR and must enact legislation that protects the rights of parents with disabilities. Congress should address the disparate treatment experienced by parents with disabilities by adding specific protections for parents with disabilities in the Adoption and Safe Families Act. Further, Congress should shift funding priorities at the federal level so that states have a greater incentive to provide services to families while the children are maintained in the home, as research has shown that in-home services are most effective, particularly for people with disabilities. DOJ should issue guidance to states—namely child welfare agencies and dependency courts—on their legal obligations pursuant to the ADA. HHS and DOJ should gather data on parents with disabilities and their interactions with child welfare and dependency court systems. In addition, DOJ, in collaboration with HHS, must investigate all reported allegations of child welfare agencies or dependency courts that violate the ADA and must enforce the law as appropriate.