State of Change

Legislative Changes: Proposals and Models

Legislative Changes: Proposals and Models

WHILE A FIX AT THE federal level such as an amendment to the Americans with Disabilities Act would seem the most elegant solution to the widespread discrimination faced by parents with disabilities, such a fix is unlikely to be forthcoming given the current political climate. Far from increasing protections for individuals with disabilities, the current administration has consistently sought to take away existing safeguards.51 Timely action is needed to stop the ongoing separation of families, and we cannot allow such separations to continue unchecked while we wait for a more opportune moment for federal reform.

Moreover, previous federal intervention has failed to achieve the desired results. In 2015, after intervening on behalf of Sara Gordon, a Massachusetts mother with an intellectual disability whose 2-dayold daughter had been removed from her care and placed in foster care for over two years, the Department of Justice and the Department of Health and Human Services jointly issued a document outlining the obligations of state and local child welfare agencies and courts under the ADA. Noting that discrimination complaints from disabled parents to both the Health and Human Services Office for Civil Rights and the Department of Justice Civil Rights Division were numerous and on the rise, the document clarifies the non-discrimination requirements in Title II of the ADA and Section 504 of the Rehabilitation Act, reiterates the need for objective and convincing evidence to support a claim of direct threat, and emphasizes the impotance of individualized treatment and full and equal opportunity for parents and prospective parents with disabilities.

The guidelines set forth are clear and thorough, yet as evidenced by cases like the protracted legal battle of Amy Fabbrini and Eric Ziegler, which continued for over two years after the federal guidelines were issued, its effects have failed to stem the tide of discrimination. Quite simply, such guidelines are not widely disseminated, and child welfare workers and legal professionals remain unaware of them—in significant part because there is no mandatory training on parental disability for social workers and officers of the court. Federal guidelines are only as powerful as their application, and these guidelines, regrettably, are not being cited or circulated.

However, state-level action to remove discriminatory laws and replace them with actively supportive ones has gained momentum in recent years and has been effective. As Susan Schweik and Ella Callow conclude in their white paper, we should therefore pursue legislative change using a stateby-state strategy. We need to replicate the synergy and uniformity of the LGBTQ fight to legalize gay marriage, augmenting and synthesizing current efforts.52 What, then, should these legislative changes look like, and how might they come about? A summary review of what has and has not worked at the state level is instructive as we turn to these questions.

Idaho has long been considered the gold standard for anti-discrimination reform on behalf of parents with disabilities. The series of legislative changes enacted there between 2002 and 2004 are sweeping and unequivocal, modifying every custody-related section of the Idaho statutes and even serving as the basis for the proposed model legislation set forth in the National Council on Disability's Rocking the Cradle. Not only do Idaho's state laws avoid all mention of disability in their discussion of grounds for termination of parental rights except to stipulate that nothing in the section may be construed as allowing disability-based discrimination,53 they also make clear that disabled parents have the right to provide evidence regarding how adaptive equipment and/or supportive services will enable them to carry out parenting responsibilities, that evaluations of parental fitness must take into account adaptations and supportive services and must be conducted by or with assistance from a person who has expertise in such adaptations and services, and that adoptions must not be denied solely on the basis of the disability of a prospective adoptive parent.54 In any cases where a parent's disability is found to have an effect in court proceedings, specific documentation of the nature of that effect must be provided.55

Other states have followed in Idaho's footsteps with varying levels of success. Colorado and South Carolina have passed similarly comprehensive legislation to prohibit disability-based discrimination against parents and prospective parents in the dependency court, family court, and adoption and foster care systems, with Colorado's legislation signed into law mere days before the publication of this policy brief.56 West Virginia has removed disability as grounds for termination of parental rights and stipulates that courts must ensure that child welfare agencies make reasonable accommodations for parents with disabilities in accordance with the ADA.57 Other states including Arkansas, Kansas, Missouri, and Oklahoma also make clear that reasonable accommodations must be provided,58 but at the same time, they continue to list disability as an acceptable consideration in dependency court decisions, though Kansas, Missouri, and Oklahoma stipulate that it cannot be the sole consideration. We have seen above that a handful of states have passed laws pertinent only to family court proceedings and/or to adoption law or to parents with specific disabilities (namely, blindness and intellectual disability). Additionally, California has taken a valuable step toward supporting parents with disabilities by including adaptive baby-care equipment among the items covered by the state's Medicaid program, MediCal.59

The legislation in Idaho and the states that have joined it in enacting comparable legislation, in particular Colorado and South Carolina, should leave us with no doubt that other states can follow suit, passing legislation addressing discrimination in the dependency court, family court, and adoption and foster care systems and applying to individuals with all types of disabilities. Moreover, these states' landmark efforts have shown us that this kind of comprehensive legislative reform is effective. In the 2006 Lieurance-Ross v. Ross case, for instance, an Idaho father appealed the decision of a family court magistrate that he could not be awarded custody of his children due to stroke-induced cognitive disabilities. Demonstrating what they had learned from Idaho's then-quite-new legislation, the court of appeals engaged in a discussion of adaptive parenting equipment and services and ruled in the father's favor.60 In South Carolina, a mother with an intellectual disability was reunited with her baby, who had been removed from her custody through a private action due to the mother's disability even though she had appropriate supports in place to care for her child. The judge in the case used South Carolina's new Persons with Disabilities Right to Parent Act61 to effect the reunification.62 While the initial removals in both of these cases should not have happened, the legislation in place allowed them to be resolved more quickly and with less evident disability-related bias than has been present in similar cases in states without comparable laws.

Recent legislative changes have also proven the power of sustained involvement by disability activists and disability rights organizations. The success of the Idaho legislation, for instance, is likely due in large part to the integral participation of multiple disability rights organizations from the beginning, namely the Idaho State Independent Living Council and the then Berkeley-based disability movement and clinical family services agency Through the Looking Glass National Center for Parents with Disabilities and their Families.63 Compare this broadly comprehensive legislation with the anti-discrimination legislation in Washington, where only parents with intellectual disabilities are protected. There, disability rights organizations were not consulted until comparatively late in the process, and the resulting legislation, though commendable, is more limited in scope than it might otherwise have been.64 We strongly encourage states enacting legislation to follow Idaho's lead in working closely throughout the process with disability rights organizations where there is expertise in and ideally firsthand knowledge of both the rights and the capabilities of parents with disabilities.

Praiseworthy though the steps forward above detailed unquestionably are, even the most comprehensive current legislation could be improved upon. For instance, no existing state law makes specific mention of discrimination against prospective disabled parents by professionals providing access to assisted reproductive technologies. This could be remedied by modeling proposed legislation on the template found in Appendix C of Rocking the Cradle.65 Further, no law addresses the fact that parental mental illness is one of the few bases on which the hard-won protections of the Indian Child Welfare Act of 1978 are often circumvented by state court systems.66 Particularly given that roughly 26.5 percent of Native American parents and caregivers from whom agencies have removed children identify as disabled as well as the vast over-representation of Native American children in the child welfare system, this disturbing dynamic should be named, and a restatement that the ICWA applies with equal vigor where parents have disabilities of any type should be included in remedial legislation at the state level.67

While a number of positive changes have been made in recent years, the inconsistencies across state lines and disability populations are troubling, and we urge states to take the model legislation in Rocking the Cradle and the legislation passed in Colorado, Idaho, and South Carolina as a template and work to pass broadly comprehensive legislation of their own, keeping in mind the following:

  • Such legislation must address discrimination in the dependency court, family court, and adoption and foster care systems and should be applicable as well to the question of assisted reproductive technologies. ­
  • It should encompass all disabilities, including physical and sensory, emotional and psychiatric, and intellectual and developmental ones, while also taking into account the specific needs of American Indian and Alaskan Native families where ICWA is implicated in their child welfare case. ­
  • Legislation should be drafted in consultation with experts in disability law and the practical techniques and lived experience of parenting while disabled. ­
  • Legislation must incorporate protections against the continuing use of pseudo-scientific measures for parents with intellectual and psychiatric disabilities. Reliance on IQ to determine parenting capacity for people with intellectual disability, and personality testing for those with psychiatric disability, must be prevented.

We believe that only with such legislation in place will parents with disabilities and their children begin to receive the just and equitable treatment they so clearly deserve.

  • 51. See the attempted passage of HR 620, which would have made it significantly easier for businesses to avoid ADA compliance, and the Department of Education's rescinding of 72 guidance documents outlining the rights of disabled students.
  • 52. Schweik and Callow, 2014
  • 53. Code Ann. 16-1601, 16-2001(2), 2004
  • 54. Code Ann. 32-717, 32-1005, 16-1501, 2004
  • 55. Code Ann. 32-717(5), 2004
  • 56. CO HB 18-1104, 2018; SC HB 3538/SB 291, 2017
  • 57. WV HB 2200, 2015
  • 58. AR SB 489, 1997; Revised Kansas Code for Care of Children, Kan. Stat. Ann. 38-2201, 2006; MO HB 604/SB 555, 2011; 10A Okl. St. Ann. 1-4-90413, 2014
  • 59. CA SB 2152, 2000
  • 60. Lieurance-Ross v. Ross, 2006
  • 61. HB 3538/SB 291
  • 62. Able South Carolina, 2018
  • 63. Schweik and Callow, 2014
  • 64. Schweik and Callow, 2014
  • 65. National Council on Disability, 2012
  • 66. Schweik and Callow, 2014
  • 67. National Council on Disability, 2012