Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children National Council on Disability September 27, 2012 National Council on Disability An independent federal agency making recommendations to the President and Congress to enhance the quality of life for all Americans with disabilities and their families. Letter of Transmittal September 27, 2012 The President The White House Washington, DC 20500 Dear Mr. President: The National Council on Disability is pleased to submit the enclosed report, “Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children.” Despite a dark history marked by the eugenics movement, increasing numbers of people with disabilities are choosing to become parents. Recent research reveals that more than 4 million parents—6 percent of American mothers and fathers—are disabled. This number will unquestionably increase as more people with disabilities exercise a broader range of lifestyle options as a result of social integration, civil rights, and new adaptive technologies. Likewise, there has been a dramatic increase in the number of veterans who are returning from war with service-connected disabilities, some of whom may already be parents and others who will enter parenthood after acquiring their disability. The right to parent without interference is protected by the U.S. Constitution and balanced by the judicially recognized power of the state to interfere to protect the well-being of its children. The factors used in both dependency court and family court proceedings to determine whether children need to become wards of the state and which parent is the most competent custodian may be reasonable. Nonetheless, these rules are not objectively or justly applied to parents with disabilities and their children. Even today, 22 years after the passage of the Americans with Disabilities Act, parents with disabilities are the only distinct community of Americans who must struggle to retain custody of their children. Removal rates where parents have a psychiatric disability have been found to be as high as 70 percent to 80 percent; where the parent has an intellectual disability, 40 percent to 80 percent. In families where the parental disability is physical, 13 percent have reported discriminatory treatment in custody cases. Parents who are deaf or blind report extremely high rates of child removal and loss of parental rights. Parents with disabilities are more likely to lose custody of their children after divorce. In addition, prospective parents with disabilities have more difficulty when it comes to accessing reproductive health care such as assisted reproductive technologies, and they face significant barriers to adopting children. Clearly, the legal system is not protecting the rights of parents with disabilities and their children. Fully two-thirds of dependency statutes allow the court to reach the determination that a parent is unfit (a determination necessary to terminate parental rights) on the basis of the parent’s disability. 1331 F Street, NW ■ Suite 850 ■ Washington, DC 20004 202-272-2004 Voice ■ 202-272-2074 TTY ■ 202-272-2022 Fax ■ www.ncd.gov In every state, disability may be considered when determining the best interest of a child for purposes of a custody determination in family or dependency court. A nexus should always be shown between the disability and harm to the child, so that a child is taken from a custodial parent only when the parent’s disability is creating a detriment that cannot be alleviated. However, this is not the reality. NCD undertook this groundbreaking study to advance understanding and promote the rights of parents with disabilities and their children. This report provides a comprehensive review of the barriers and facilitators people with diverse disabilities—including intellectual and developmental disabilities, psychiatric disabilities, sensory disabilities, and physical disabilities—experience when they are exercising their fundamental right to create and maintain families. The report also describes the persistent, systemic, and pervasive discrimination against parents with disabilities. It analyzes how U.S. disability law and policy apply to parents with disabilities within the child welfare and family law systems, and the disparate treatment of parents with disabilities and their children. Examination of the impediments prospective parents with disabilities encounter when adopting or accessing assisted reproductive technologies provides further examples of the need for comprehensive protection of these rights. This report sets forth suggested action to ensure the rights of parents with disabilities and their children. Whether such action is taken at the state or federal level—as an amendment or a new law— the need for action could not be more timely or clear. In closing, NCD commends your Administration for its commitment to family values. Parents with disabilities and their children deserve support, not stigma. We look forward to working with you to ensure that the recommendations in this report are implemented. Sincerely, Jonathan Young, PhD, JD Chairman (The same letter of transmittal was sent to the President Pro Tempore of the U.S. Senate, the Speaker of the U.S. House of Representatives, and the Director of the Office of Management and Budget.) National Council on Disability Members and Staff Members Jonathan M. Young, PhD, JD, Chairman Janice Lehrer-Stein, Vice Chair Gary Blumenthal Chester A. Finn Sara Gelser Matan Aryeh Koch Stephanie Orlando Kamilah Oni Martin-Proctor Lonnie Moore Ari Ne’eman Dongwoo Joseph (“Joe”) Pak, MBA Clyde E. Terry Fernando M. Torres-Gil, PhD Linda Wetters Pamela Young-Holmes Staff Aaron Bishop, Executive Director Stacey S. Brown, Staff Assistant Julie Carroll, Senior Attorney Advisor Lawrence Carter-Long, Public Affairs Specialist Joan M. Durocher, General Counsel & Director of Policy Lisa Grubb, Confidential Special Assistant / Coordinator of Administration Geraldine-Drake Hawkins, PhD, Senior Policy Analyst Sylvia Menifee, Director of Administration Carla Nelson, Administrative Specialist Robyn Powell, Attorney Advisor Anne Sommers, Director of Legislative Affairs & Outreach Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 3 Acknowledgments The National Council on Disability (NCD), and particularly Robyn Powell, express appreciation to Through the Looking Glass, the NIDRR-funded National Center for Parents with Disabilities and Their Families— specifically Ella Callow, Megan Kirshbaum, and Paul Preston—for their assistance in writing sections of this report, as well as their insight and guidance throughout the research and drafting of the report. NCD also recognizes Lindsey Coffey, associate at Ropes and Gray, for her assistance and guidance in drafting the chapter on assisted reproductive technologies. NCD thanks the key informants who provided varied perspectives and valuable contributions. Finally, NCD expresses its gratitude to the parents and prospective parents who shared their stories and experiences. 4 National Council on Disability Table of Contents List of Acronyms . 11 Executive Summary . 15 Summary of Methodology . 17 Findings and Recommendations . 17 Chapter 1 . Introduction . .. 39 The Evolution of Parenting in the Disability Community . 39 Parenting with a Disability in the 20th Century . 39 Parenting with a Disability Today: The Eugenics Movement’s Backdoor? . 40 Current Data on Parents with Disabilities and Their Families . 43 Fundamental Principles of Parenting Rights in the United States . 45 Dependency Law . 47 Family Law . 49 Adoption Law . 50 Purpose and Structure of Report . 51 Chapter 2 . Research Methodology . 53 Chapter 3 . Disability Law Framework . 55 Federal Disability Rights Laws: An Overview . 55 Rehabilitation Act of 1973 . 55 Americans with Disabilities Act . 56 Title II of the Americans with Disabilities Act . 57 Title III of the Americans with Disabilities Act . 59 Ensuring Accessibility for the Whole Family . .. 60 Conclusion . 63 Chapter 4 . Pursuing Parenting Rights Through the Convention on the Rights of Persons with Disabilities . 65 Respect for Home and the Family . 66 Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 5 Access to Reproductive Health . 68 Additional Protections for Parents with Disabilities and Their Children . 68 Conclusion . 69 Chapter 5 . The Child Welfare System: Removal, Reunification, and Termination . 71 The Child Welfare System: A Brief Overview . 72 Disability Law and the Child Welfare System . 74 Disparate Impact of Child Welfare System on Parents with Disabilities and Their Families . 76 Discriminatory State Statutes . 84 Recurrent Barriers in Child Welfare Cases Involving Parents with Disabilities . 86 Adoption and Safe Families Act of 1997 and Its Impact on Parents with Disabilities . 86 Perceived Limits on Application of the Americans with Disabilities Act at Termination Phase . 93 Bias, Speculation, and the “Unfit Parent” Standard . 94 Issues in Meaningful Participation and Representation . 98 The Impact on Children . 101 Conclusion . 106 Chapter 6 . Parental Disability and Child Welfare in the Native American Community . 109 The Tribal Context: A Brief Overview . 109 The History of Native Americans and Child Welfare . 109 The Statistics . 110 Summary of the Indian Child Welfare Act . 110 The Intersection of the ADA and ICWA . 110 Lack of Services . 111 Need for Culturally Relevant Services and Training . 111 Need