A Winnebago mother who has intellectual disabilities faces termination of parental rights to her six-year-old son on the basis of speculation about her capacity to help her child with homework and provide discipline in the future. A Cherokee father is told that his mild and controlled psychiatric disability is grounds for his infant daughter’s removal to a non-Indian foster home with no finding of neglect or abuse. A Pomo mother and Blackfoot father, both with physical disabilities, are denied services for 18 months to reunify with their child, who was removed from them at birth. An Alaskan Native mother and grandmother are informed that they are “unfit” to retain custody of the family toddler because of the grandmother’s physical disability and the mother’s intellectual disabilities. At stake in these cases are more than just the breaking hearts of children and parents. These cases tear at the dignity of people with disabilities, the welfare of Native American families, and the very fabric and future of sovereign Native American nations.

The Tribal Context: A Brief Overview

There are 565 federally recognized Indian tribes, living in 326 reservations, rancherias, villages, and urban Indian communities nationwide.endnote[475] Indian tribes are sovereign entities that have a nation-to-nation relationship with the federal government. That relationship and their relationships to state and local governments are highly circumscribed by statutory and case law. Most of these tribes have some form of executive, legislative, and (in 150 tribes) judicial systems, in the form of tribal courts.endnote[476] They also have independent social and health services funded through a complex web of federal, tribal, and state monies. Although underfunded, many tribal courts are developed enough to provide a child welfare court. However, many others are not. Moreover, even when the court exists, 61 percent of Native American (NA) people live outside of the jurisdictional boundaries of their tribe.endnote[477] This means that child welfare cases involving NA families frequently occur in state child welfare courts and rely on state and local social services in the child welfare process.

The History of Native Americans and Child Welfare

A Native American family that includes a parent with a disability combines two of the most historically oppressed populations in American history. Between 1978 and 1990, sweeping federal laws were enacted—the ADA and the Indian Child Welfare Act—that recognized the need of both populations for protection after many decades of relentless, systemic violation of their human and civil rights. The Indian Child Welfare Act of 1978 (ICWA) was passed in response to the fact that 25 percent to 35 percent of all Native American children were being systematically removed from their homes and adopted into European American homes.endnote[478] In passing ICWA, Congress declared “that there is no resource that is more vital to the continued existence and integrity of Indian tribes than their children and… that an alarmingly high percentage of Indian families are broken up by the removal, often unwarranted, of their children from them by nontribal public and private agencies.”endnote[479]

The Statistics

In a 17-state survey conducted by TLG, there was a 26.5 percent rate of disability among Native American caregivers from whom the child welfare system removed children. The number is shockingly high, yet it makes sense. The disability rate among Native Americans between the ages of 16 and 64 is 27 percent, compared with 18 percent in the general U.S. population.endnote[480] As discussed in Chapter 5, child welfare removal rates are disproportionately high for parents with disabilities. Similarly, Native American children are overrepresented in child welfare systems wherever they reside.endnote[481] While Native Americans are only 0.8 percent of the total U.S. population,endnote[482] they constitute 1.7 percent of the child welfare caseload nationally, a vast overrepresentation.endnote[483] Native Americans and African Americans are more likely than all other U.S. groups to be investigated by child welfare, to have allegations of abuse or neglect substantiated, and to have their children removed and placed in foster care.endnote[484]

Summary of the Indian Child Welfare Act

ICWA applies whenever a parent is legally restricted from accessing his or her child if the child is enrolled or eligible for enrollment with a federally recognized Indian tribe.endnote[485] The most significant class of cases to which ICWA applies are child welfare cases. Theoretically, ICWA should protect children of parents with disabilities and their families. Caseworkers in ICWA-governed cases must take the following actions:endnote[486]

• Provide active efforts to the family.
• Identify a placement that fits under the ICWA preference provisions.
• Notify the child’s tribe and the child’s parents of the child custody proceeding.
• Actively involve the child’s tribe and the child’s parents in the proceedings.

Unfortunately, the reverse tends to occur when the ADA and ICWA intersect. Instead of ICWA strengthening the protections for parents with disabilities, the parent’s disability appears to undermine the protection ICWA is designed to provide.

The Intersection of the ADA and ICWA

These two laws and populations are increasingly intersecting in child welfare cases in state courts. In a recently concluded study entitled The Perspective and Demographics of Parents Contacting Through the Looking Glass Regarding Custody Issues, Native Americans made up 5 percent of all participants.endnote[487] This is six times the percentage of Native Americans in the U.S. population.endnote[488] This result prompted the primary investigator to conduct an informal survey of 100 child welfare appeals cases in which the child claimed to be Indian within the meaning of the ICWA and the child or a parent had a disability. She found that in 19 percent of the cases, the child was in fact Indian and the parent’s disability was a factor in the case.

In tribal courts, neither the ADA nor ICWA applies automatically to the activities of tribal governments, because these are sovereign nations.endnote[489] However, many tribes incorporate ICWA into their own legislation and attempt to enforce its provisions in state court, where tribes have standing in child welfare cases involving their citizen children. Understandably, they are no more sophisticated than the general population of professionals in their understanding of how the ADA applies to cases involving parental disability. As a result, they may endorse as “active” efforts that fail even to reach the level of “reasonable”: services not accommodated for the disability of the parent. Moreover, they are vulnerable to the same assumptions regarding lack of capacity as other professionals who do not understand the types of services, equipment, and techniques that can support good parenting with this population.

Lack of Services

We could not find a disability or Native American organization that provides any services specific to parents with disabilities, culturally relevant or otherwise. Lack of services has been identified as a factor in decisions to substantiate allegations of abuse or neglect.endnote[490] It is known that a serious barrier to success in child welfare is the lack of service providers, especially in rural areas,endnote[491] and that overinvolvement in child welfare is a significant indicator of insufficient services for parents with and without disabilities.endnote[492] This is of special concern in the context of Native American communities because, in the words of researchers Harris and Hackett, “Racial inequity in service availability and service delivery has been found to be the strongest contributing factor in disproportionate numbers of children of color in placement with child welfare.”endnote[493]

Need for Culturally Relevant Services and Training

Because of the complex funding scheme for Native American services, delivery systems look different in Indian country than they do in non-Native counties or municipalities. Differences also exist between service delivery systems on different reservations and between reservation and urban settings. Five basic service systems should “touch” child welfare cases in which parental/caregiver disability is involved: (1) tribal lawyers, judges, law enforcement, ICWA specialists, social workers, and foster care system staff working in the context of child welfare cases; (2) mental health and independent living/skills training staff; (3) occupational therapists and rehabilitation staff; (4) medical staff who work with expectant mothers or in delivery settings; and (5) early intervention, Early Head Start/Head Start, and family wellness program staff who serve families in education, child care, or abuse/neglect prevention.

Services and training capacity must be developed with an eye toward cultural relevance and practical utility in the community. For example, although each tribe is unique, many Native American cultures share a concept of family very different from that of mainstream society. In Native American culture, the extended family, clan, and larger community have various levels of rights and responsibilities for tribal children. Similarly, traditional Native American views of disability—its causes and implications—are generally dissimilar to views in non-Native communities. In fact, most tribal languages have no term for disability, and the idea has no direct parallel in Native cultures.endnote[494]

Regarding successful child welfare projects in Indian country, a substantive examination by the National Indian Child Welfare Association stated:

“What can be brought to a community is help with problem-solving skills and strategies, facilitation of a community development process, and sharing of technical information or knowledge to show people how to achieve their own goals.”endnote[495]

Emerging organizations such as the Bay Area Collaborative on American Indian Resources and the National Urban Indian Family Coalition, along with existing Native American disability services, are starting to provide technical information and knowledge about parents with disabilities and how to support them in their own communities. Long-standing organizations such as the Native American Independent Living Services (which serves American Indian/Alaskan Native people in New Mexico) and the Native American Disability Law Center (which works with the Pueblo communities in the Southwest) are the kinds of partners from whom advocates in the field of disability/parenting could benefit.

Need for Data Collection

Tribal courts are often left out of data collection on child welfare matters. In fact, the National Child Abuse and Neglect Data Set—a significant national database that collects information on the causes and demographics of child welfare system consumers—does not include any tribal court information.

Conclusion

It is imperative for the future of sovereign Native American nations that their families be preserved. Addressing the intersection of disability in ICWA cases with training and support services developed for both reservation and urban Indian communities could play a significant preservative role. It is not necessary that the ADA be legislated into tribal law, although tribal law acknowledging the need to retain nonpathological views of people with disabilities would be useful. Instead, tribes need to be supported in (1) developing culturally relevant supportive services to prevent the entry of their families into child welfare systems or increase the likelihood of good outcomes when they do have to deal with these systems; (2) having policies and guidelines to inform their course of action when they recognize that attitudinal bias is influencing the state child welfare process; and (3) recognizing when the ADA should be, but is not being, implemented appropriately in these cases.