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Chapter 15: Remedial State and Federal Legislation of Interest

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“Law is an expression of the society in which it arises.”[1242]

State Legislation of Interest

To address the barriers people with disabilities face in creating and maintaining families, some states have modified their legislation affecting custody. The efforts of grassroots disability organizations in Idaho and Kansas have led to significant alterations in state statutes governing custody of children in dependency and family court proceedings.[1243] California passed legislation that requires the state’s Medicaid program to include adaptive baby care equipment in the list of durable medical equipment it covers.[1244] Other states have also addressed the disparities facing parents with disabilities and their families by amending their legislation, albeit not as comprehensively as Idaho or Kansas. These disability-specific legislative changes should be models for similar legislation at the state and federal level.


The Idaho State Independent Living Council (SILC) undertook a groundbreaking effort to change legislation that was devastating the lives of parents with disabilities and their families. As a grassroots organization, the Idaho SILC gathers information on the issues most important to its consumers and includes these issues in its annual State Plan on Independent Living. In 2000, many consumers reported a rising fear of unjustified removals of children from their parents with disabilities. Led by Kelly Buckland, the executive director of Idaho SILC at the time, the Fathers and Mothers Independently Living with their Youth (FAMILY) Committee was established to address this problem.[1245]

In collaboration with TLG and local legislators, the FAMILY Committee drafted legislation for introduction during the 2000 state legislative session. The legislation passed the Senate unanimously but was defeated in the House Health and Welfare Committee. The FAMILY Committee met over the summer of 2000 and made minor revisions to address the concerns of the Idaho Prosecutors Association. The legislation was reintroduction in 2001; again, the bills passed the Senate but failed in the House Health and Welfare Committee.[1246]

Following another round of revisions, draft legislation was sent to legislators, magistrates, and committee members for a final review before the 2002 legislative session began. Eventually, four successful bills were passed over the 2002 and 2003 legislative sessions, modifying every custody-related section of the Idaho Statutes.[1247]

Collectively, these bills addressed attitudinal bias; lack of knowledge of disability, adaptive equipment, and services; problems in the production of good evidence and the challenge of bad evidence; and laws leading to discrimination by allowing the removal of a child without showing a nexus between the disability and detriment to the child. The bills made the following language additions and removals in the divorce, separation, and dependency statutes:

  • Added a nondiscrimination statement regarding parents with disabilities.[1248]
  • Defined “disability, supportive services, and adaptive equipment.”[1249]
  • Added a section that makes evidence relevant and admissible regarding the services and adaptive equipment available to enable parents with a disability to care for their children.[1250]
  • Added language requiring anyone who conducts a parenting evaluation to consider the use of adaptive equipment and supportive services for parents with disabilities and requiring the evaluator to have (or be assisted by someone who has) expertise in such equipment and services.[1251]
  • Removed references to disability as a factor to be considered in custody determinations.[1252]
  • Added a section requiring a written statement by the court should it decide that disability is a relevant factor in a custody determination.[1253]

Because of the FAMILY Committee’s efforts, statutes governing adoption and probate guardianships of children were also modified.[1254]

To date, two cases involving the new legislation have reached the appellate level.[1255] In Doe v. Doe,[1256] the court was unable to reach the merits of the case because it determined that the new legislation was not to be applied retroactively. InLieurance-Ross v. Ross,[1257] a father appealed the decision of a family court magistrate that he could not be awarded custody of his children because he had a general guardianship as a result of stroke-impaired cognitive functioning. In a decision that demonstrated what the court had learned from the new legislation, the conclusion included a discussion of adaptive parenting equipment and services and stated the following:

“[Because] a parent with a guardian is not precluded from seeking custody of his or her child, we see no reason to apply Section 32-717(2) differently in situations where a parent with a disability has a guardian from those situations where a parent with a disability does not have a guardian. In either scenario, the court is required to make findings regarding the effect the disability has on the parent’s ability to carry out parenting responsibilities and whether adaptive equipment or supportive services can compensate for those aspects of the disability that affect the parent’s ability to care for his or her child.”[1258]


Undoubtedly inspired by Idaho’s success, the State Independent Living Council of Kansas (SILCK) embarked on a process of protecting the rights of parents with disabilities and their families through legislative amendment.[1259] Following the 2003 Kansas Disability Conference, at which numerous parents with disabilities shared stories of losing their parental rights, SILCK decided to pursue this injustice during the 2004 legislative session.

Over the previous seven years, the Judicial Council had been focused on revising the Kansas Code for Child in Need of Care (CINC). Although the council had not considered the issue of discrimination against parents with disabilities, SILCK secured technical assistance from Ella Callow, director of TLG’s legal program, and engaged members of the council to support the proposed changes. Nondiscriminatory language had not been included in the original bill, but testimony from SILCK to amend and add such language was supported by attorneys, Judicial Council members, and the state Judiciary Committee.[1260]

As a result of the timing of the CINC revision project, SILCK was able to introduce and pass effective remedial legislation for parents with disabilities and their families swiftly and without much revision. SB 230 passed during the 2005 legislative session and went into effect in 2006. This legislation included four significant safeguards for parents with disabilities in the new Chapter 38 of Article 22 “The Revised Kansas Code for Care of Children.” These safeguards addressed issues of attitudinal bias; lack of knowledge of adaptive equipment; problems in the production of good evidence and the challenge of bad evidence; and laws that led to discrimination by allowing the removal of a child without showing a link between the parent’s disability and detriment to the child.[1261] The legislation added the following language:

  • A nondiscrimination statement regarding parents with disabilities that more fully encompassed them in the policy directive to protect the privacy and unity of the family.[1262]
  • A statement that the disability of a parent will not constitute a ground for finding the child dependent or for removing the child from the parent without a specific showing of a causal relationship between the disability and harm to the child.[1263]
  • A statement that the disability of a parent will not constitute a ground for terminating the parental rights of a parent with a disability without a specific showing of a causal relationship between the disability and harm to the child.[1264]
  • A mandate that custody determinations under the code will consider the availability and use of accommodations, specifically adaptive equipment and support services.[1265]

While more limited in scope (because it was part of a revision of one specific code—the dependency code), the Kansas legislation includes some significant protections for parents with disabilities. Because it requires that causation between harm to the child and the disability be established, the code principally necessitates the provision of proper services and the performance of adapted evaluations and assessments. These legislative changes set the stage for modification of other relevant Kansas codes, such as those affecting domestic relations, adoption, and guardianship.[1266]


Acknowledging the importance of adaptive baby care equipment for some parents with disabilities, California’s Protection and Advocacy system, in collaboration with TLG, sponsored AB 2152 in 2000.[1267] This legislation caused adaptive baby care equipment to be included in the list of durable medical equipment covered by Medi-Cal (California’s Medicaid program). The legislation is groundbreaking because it expands references to “conditions that interfere with normal activity” to include those that interfere with the ability to parent; identifies such conditions as meeting the definition of significant disability and thus rendering services medically necessary; and expands the rights of Medi-Cal beneficiaries to include receiving adaptive parenting equipment within the definition of durable medical equipment.[1268] The legislative language addresses the problem of the cost-prohibitive nature of some adaptive equipment. As yet, there has been no test case. There was a funding crisis at the time the legislation was passed that resulted in confusion as to whether the new legislation would be funded. However, recently the state government has indicated that the legislation can be acted upon.[1269]

Efforts by Other States

Other states have also amended legislation in an attempt to remediate the discrimination experienced by parents with disabilities and their families. For example, on July 12, 2011, Missouri Governor Jay Nixon signed into law HB604 and SB555, which strengthen the rights of parents with disabilities and their families.[1270] These bills came on the heels of a recent case in which a couple lost custody of their daughter for 57 days because they were blind.[1271] This legislation prohibits discrimination on the basis of disability “without a specific showing that there is a causal relationship between the disability or disease and a substantial and significant risk of harm to a child.” The legislation applies to termination of parental rights and custody as well as foster and adoptive parents.

In 2009, Maryland passed legislation protecting the rights of parents with disabilities. HB 689/SB 613 prohibits discrimination on the basis of disability against parents, guardians, or caregivers who are involved in adoption, custody, or Children in Need of Assistance cases.[1272]

In 2007, Vermont changed its state law, which now includes language mandating that in child welfare, there should be an appropriate balance between protecting children and respecting the rights of a parent or guardian, including a parent or guardian with disabilities, and recognizes that people with a disability can be successful parents. The rules also include the possible use of adaptive equipment and supports. The Vermont state statute requires that the strengths and needs of parents with disabilities be considered in child welfare proceedings.[1273] Specifically, Vermont State Code 52 § 4922(b) states:

“The rules shall strike an appropriate balance between protecting children and respecting the rights of a parent or guardian, including a parent or guardian with disabilities, and shall recognize that persons with a disability can be successful parents. The rules shall include the possible use of adaptive equipment and supports.”[1274]

Rhode Island eliminated disability language in its termination of parental rights statute in 2000.[1275]

In 1997, Arkansas wrote the ADA into its child welfare statute. Pursuant to Ark. Code Ann. § 9-27-341, a court may terminate parental rights only after it has found by clear and convincing evidence that “despite a meaningful effort…to rehabilitate the parent and correct the conditions that caused removal, those conditions have not been remedied by the parent”; provided, however, that “the department shall make reasonable accommodations in accordance with the Americans with Disabilities Act…to parents with disabilities in order to allow them meaningful access to reunification and family preservation services.”

Federal Legislation of Interest: Indian Child Welfare Act

On November 11, 1978, the Indian Child Welfare Act (ICWA) of 1978 was enacted.[1276] Its purpose was to establish standards for the placement of Native American children in foster and adoptive homes and to prevent the breakup of Indian families. ICWA established minimum federal standards for the removal of Native American children from their families; required Native American children to be placed in foster or adoptive homes that reflect Native American culture; provided for assistance to tribes in the operation of child and family service programs; created exclusive tribal jurisdiction over all Native American child custody proceedings when requested by the tribe, parent, or Indian custodian; and granted preference to Native American family environments in adoptive or foster care placement.[1277] Moreover, ICWA contains the strongest language in favor of family preservation. ICWA requires proof by clear and convincing evidence for any temporary foster care placement and proof beyond a reasonable doubt for termination of parental rights.[1278]

As noted by Callow, Buckland, and Jones:[1279]

“While the Indian Child Welfare Act (ICWA) is clearly not aimed at the disability community, the impetus for the ICWA arose from circumstances similar to those surrounding families with parents who are disabled. Both Native Americans and people with disabilities are historically oppressed minorities denied civil and human rights in this country. Both groups were systemically isolated from other sectors of society until midway through the last century. Both groups suffer extreme levels of poverty and little is understood about their cultures, leading to generalized stereotyping and discrimination. Most importantly, both groups have been subjected to involuntary sterilization programs and the massive removals of their children.”[1280]

Congress passed the act in response to the alarming rate at which Native nations were losing custody of their children;[1281] indeed, testimony from the 1974 hearings before the Subcommittee on Indian Affairs of the Senate Committee on the Interior and Insular Affairs included evidence that 25 percent to 35 percent of Native children were being removed from their families.[1282] The systemic removal of Native children was believed to be the result of misconceptions and stereotypes about poverty and about the child care practices of Native communities.[1283]

In passing ICWA, Congress specifically said:

“…that there is no resource that is more vital to the continued existence and integrity of Indian tribes than their children and that the United States has a direct interest, as trustee, in protecting Indian children who are members of or are eligible for membership in an Indian tribe; (4) 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 and that an alarmingly high percentage of such children are placed in non-Indian foster and adoptive homes and institutions; and (5) that the States, exercising their recognized jurisdiction over Indian child custody proceedings through administrative and judicial bodies, have often failed to recognize the essential tribal relations of Indian people and the cultural and social standards prevailing in Indian communities and families.”[1284]

The dearth of information about parenting in the Native American culture is comparable to the limited knowledge and understanding about the disability culture in general, adaptive equipment, supportive services, and the strengths of parents with disabilities.[1285] Because of these and other similarities between the causes of custody loss in the two communities—such as poverty, illiteracy, bias, and discrimination—portions of ICWA that provide remedy for the Native American community should be borrowed to strengthen new legislation to protect the rights of parents with disabilities and their children.[1286]

The following portions of ICWA—with attention to necessary disability adaptations—can be applied in remedial legislation to address the issues of lack of knowledge about adaptive equipment, services, and assessments; problems with the mandated timelines in dependency cases; lack of adequate legal counsel in the dependency process; and a lack of adequate and timely adapted services in the dependency courts:[1287]

  • Mandatory written notification—with return receipt requested—must be provided to parents when a dependency action is instituted. No action may be taken until 10 days after receipt of the notice by the parent. Upon request, the parent shall have the right to an additional 20 days to prepare for any such proceeding.[1288]
  • Mandatory appointment of counsel for the parent during any removal, placement, or termination proceeding.[1289]
  • Requirement that states provide evidence of active efforts to prevent the removal of a child or the termination of a parent’s rights.[1290] Active efforts have been interpreted in case law to require more vigorous intervention than reasonable efforts, the standard set forth in the Adoption and Safe Families Act.[1291]
  • Requirement that no removals or terminations may occur in the absence of a determination (supported by clear and convincing evidence in the cases of removals and by reasonable doubt in the cases of termination) that failure to remove or terminate will seriously emotionally or physically damage the child.[1292] Part of the showing must include the testimony of a qualified expert witness.[1293]


To protect the rights of parents with disabilities and their children, states must follow the impressive work done in Idaho, Kansas, and California—as well as the efforts of the other states mentioned here—by passing similar legislation. Moreover, federal legislation similar to ICWA must be enacted. Together, the language of these statutes provides cohesive and comprehensive remedy to the common causes of children being removed from parents with disabilities in family or dependency court. A discussion of model state and federal legislation follows in the next chapter.