Rocking the cradle: ensuring the rights of parents with disabilities and their children

Rocking the cradle is a comprehensive policy study, infused with real life stories of parents with disabilities. The report reviews the barriers and facilitators people with disabilities experience when exercising their fundamental right to create and maintain families, and the discrimination often faced by parents with disabilities. The report analyses how US disability law and policy apply to parents with disabilities in the child welfare and family law systems. Problems faced by prospective parents with disabilities who wish to adopt or access assisted reproductive technologies (ART) further illustrate the need for comprehensive protection of these rights. The report also examines programs that currently serve parents with disabilities and their children, and finds that with more funding, model programs could easily grow to better serve this often overlooked population.

Key Findings

Increasing numbers of Americans with disabilities are choosing to become parents; currently, there are more than 4.1 million parents with disabilities in the US, roughly 6.2% of all American parents with children under the age of 18. Estimates indicate 6.1 million children in the US have parents with disabilities, which amounts to nearly 1 in 10 American children. Parents with disabilities are the only distinct community of Americans who struggle, solely because of their status, to retain custody of their children.

Removal rates for parents with psychiatric disabilities are as high as 70-80%, for parents with intellectual disabilities as high as 80%. There are also extremely high removal rates and loss of parental rights for parents with sensory or physical disabilities. Laws in most states allow courts to determine that a parent is unfit, and terminate their parental rights, on the basis of a disability. In every state, disability may be considered in determining the best interest of a child for purposes of custody. Parents with disabilities are more likely to lose custody or visitation of their children after divorce. Prospective parents with disabilities face significant barriers when accessing reproductive health care, such as assisted reproductive technologies, or adopting children.

Examples of real life cases include a blind couple whose new baby was taken into state custody two days after birth, a quadriplegic mother who had to fight for 18 months to retain custody of her son, and a woman with cerebral palsy who was told she might be unfit to adopt because of her disability. Sadly, these are not isolated cases.

Case study

In 1995, when Rachel and her partner (both wheelchair users) decided to adopt, they had no idea they were embarking on a 15 year journey to become parents. They contacted the local child welfare agency to express interest in becoming foster or adoptive parents. They were immediately told that because of their disabilities they were not qualified. After they worked their way 'up the chain' and threatened a lawsuit, the agency finally allowed them to apply. The couple met all the requirements and completed the necessary training. Soon after that, a brother and sister were placed with them. After only three months, the agency removed the foster children because their birth mother did not want them placed with a disabled couple. The agency offered another child, who proved to be an inappropriate match. Nearly five years later, with no communication from the agency, Rachel and her partner went through the training process again. Despite successful completion of training a second time, they never heard from the agency.

In 2004, after Rachel's partner started a new job that paid well, the couple decided to apply for private adoption, hoping a private agency would better engage and assist prospective parents with disabilities. But the private adoption process was also riddled with discrimination. In 2006, the couple applied to adopt a young girl. After a home study and nearly two years of silence, they enquired again. Finally, in early 2009, Rachel and her partner were allowed to meet a child. In March 2009, the agency contacted the couple and told them that the girl's foster parents were relinquishing her (which Rachel and her partner assumed was owing to her significant intellectual and psychiatric disabilities) and asked if they would like to become her foster parents. They agreed and she moved into their home in April 2009. In June 2010, 15 years after beginning their journey to become parents, Rachel and her partner adopted their daughter. Tragically, Rachel's partner passed away five months later.

Key Recommendations

The following list sets out some key recommendations from Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children. For a complete list of recommendations, please read the full report.

1. To begin to address the need for data and research on parents with disabilities, NCD recommends:
   • the creation of a federal Interagency Committee on Parents with Disabilities;
   • the development of national initiatives to produce effective and comprehensive data on parents with disabilities and their families;
   • federal funding for research on parents with disabilities and their families.
2. Related to the child welfare system, NCD recommends:
   • states eliminate disability from their dependency statutes as grounds for termination of parental rights and enact legislation in accordance with the language set forth in the report;
   • amending the Adoption and Safe Families Act by adding specific protections for parents with disabilities;
   • a shift of 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.
3. Similarly, with respect to the family law system, NCD recommends that states modify their custody and visitation statutes to eliminate language that discriminates against parents with disabilities.
4. NCD recommends that regular training on parenting with disabilities is mandatory for all family court professionals, custody evaluators, and adoption agency staff.
5. NCD recommends that guidance is issued, and increased monitoring and enforcement of federal disability laws is carried out for: child welfare agencies, dependency courts, family courts, domestic public and private adoption agencies, and ART providers.
6. To address inappropriate and unadapted parenting assessments and the lack of national resources to provide adapted services and adaptive parenting equipment, NCD recommends state statutes, rules of court, and professional standards require that parenting assessments are fully accessible to parents with disabilities.
7. In addition, to better support parents with disabilities and their children, NCD recommends the definition of activities of daily living be expanded to include parenting activities, so that funded personal assistance services can help consumers with their parenting responsibilities.
8. Furthermore, since parents with disabilities face significant barriers to retaining effective and affordable legal representation for dependency and family law proceedings, NCD recommends that Protection & Advocacy agencies establish protection of custody and parenting rights as a formal national priority.
9. Finally, NCD recommends that the United States swiftly ratify the United Nations Convention on the Rights of Persons with Disabilities because it reinforces the rights of people with disabilities to create and maintain families.

The full report is available on NCD's website.

Published: 10 December 2012