Chapter 4: Pursuing Parenting Rights Through the Convention on the Rights of Persons with Disabilities

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“Convinced that the family is the natural and fundamental group unit of society and is entitled to protection by society and the State, and that persons with disabilities and their family members should receive the necessary protection and assistance to enable families to contribute towards the full and equal enjoyment of the rights of persons with disabilities….”[188]

On December 13, 2006, the United Nations General Assembly adopted the Convention on the Rights of Persons with Disabilities (CRPD),[189] which entered into force on May 3, 2008. The United States signed the CRPD on July 30, 2009.[190] The CRPD will enter into force in the United States upon ratification. The purpose of the CRPD “is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.”[191]

The CRPD is the first legally binding international human rights convention specifically applying human rights to people with disabilities. It marks a paradigm shift in attitudes and approaches to people with disabilities in international instruments[192] and has been celebrated as the “Declaration of Independence” for people with disabilities worldwide.[193] The CRPD reflects the principles and aims of American disability laws and marks a departure from the traditional medical or charitable models of disability that are still embedded in many national domestic law and policy frameworks.

The CRPD recognizes that people with disabilities have rights, thus adopting the social model perspective of disability “as an evolving concept…that…results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others.”[194] To eradicate these barriers, the CRPD uses the concept of universal design, which is defined as “the design of products, environments, programmes and services to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design.”[195] The CRPD sets forth general principles that inform its overall approach and apply across the treaty: (1) dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons; (2) nondiscrimination, participation, and inclusion in society; (3) respect for difference; (4) equality of opportunity; (5) accessibility; (6) equality between men and women; and (7) respect for the evolving capacities of children with disabilities.[196] The CRPD clearly makes nondiscrimination and equal access for people with disabilities a human rights issue, and, with its enforcement, it has the power to change the way people with disabilities are treated around the world.

The CRPD is critical for ensuring the rights of people with disabilities to create and maintain families around the globe.

Respect for Home and the Family

Article 23 of the CRPD, Respect for Home and the Family,[197] is the most relevant guarantee of the rights of people with disabilities to create and maintain families. Its provisions include the following:

  • States Parties shall take effective and appropriate measures to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others….
  • States Parties shall ensure the rights and responsibilities of persons with disabilities with regard to guardianship, wardship, trusteeship, adoption of children or similar institutions, where these concepts exist in national legislation; in all cases the best interests of the child shall be paramount. States parties shall render appropriate assistance to persons with disabilities in the performance of their child-rearing responsibilities.
  • States Parties shall ensure that a child shall not be separated from his or her parents against their will, except when competent authorities subject to judicial review determine, in accordance with applicable law and procedures, that such separation is necessary for the best interests of the child. In no case shall a child be separated from parents on the basis of disability of either the child or one or both of the parents.[198]

As noted by Callow, Buckland, and Jones, “The allusion to adaptive equipment and the prevention of a child’s loss of her parents is promising for children of parents with disabilities around the world.”[199]

In addition to ensuring the rights of parents with disabilities and their children with regard to dependency and family law disputes as well as adoption, Article 23 addresses the reproductive rights of people with disabilities, which include access to assistive reproductive technologies. Specifically, Article 23 requires States Parties to ensure that:

  • The rights of persons with disabilities to decide freely and responsibly on the number and spacing of their children and to have access to age-appropriate information, reproductive and family planning education are recognized, and the means necessary to enable them to exercise these rights are provided; and
  • Persons with disabilities, including children, retain their fertility on an equal basis with others.[200]

Access to Reproductive Health

Proper health care, especially reproductive health care, is crucial for people who want to create and maintain families. In addition to Article 23’s advancement of respect for family life, Article 25 ensures the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability.[201] Specifically, States

Parties shall provide people with disabilities the same range, quality, and standard of free or affordable health care and programs as provided to other persons, including in the area of sexual and reproductive health and population-based public health programs. Article 25 also requires health care professionals to provide care of the same quality to people with disabilities as to others, including on the basis of raising awareness of the human rights, dignity, autonomy, and needs of people with disabilities through training and the promulgation of ethical standards for public and private health care. Article 25 also prohibits discrimination against people with disabilities in the provision of health insurance and prevents discriminatory denial of health care or health services on the basis of disability.

People with disabilities, particularly women, face significant barriers to receiving accessible, affordable, and appropriate health care, especially reproductive health care, including assisted reproductive technologies. Articles 25 is crucial, as people with disabilities receive lower standards of care and frequently encounter a lack of awareness among practitioners, despite seeking medical attention more regularly than people without disabilities. Moreover, Article 25 ensures that practitioners do not employ methods of discretionary access to reproductive health care, which currently occurs regularly, especially with regard to assisted reproductive technologies.

Additional Protections for Parents with Disabilities and Their Children

The CRPD provides extensive rights for parents with disabilities and their children. Parents with disabilities continue to face accessibility barriers that impede their ability to carry out certain parenting responsibilities. Article 5 addresses this problem by requiring States Parties to prohibit discrimination on the basis of disability, guarantee legal protections for people with disabilities who are discriminated against, and take all appropriate steps to ensure that reasonable accommodations are provided.[202]

Moreover, parents with disabilities and their children face significant discrimination based largely on ignorance, stereotypes, and misconceptions. Article 8 will combat this by requiring States Parties to adopt immediate, effective, and appropriate measures to raise awareness throughout society about people with disabilities; to combat stereotypes, prejudices, and harmful practices relating to people with disabilities, including those based on sex and age, in all areas of life; and to promote awareness of the capabilities and contributions of people with disabilities.[203] To do so, States Parties must initiate and maintain effective public awareness campaigns designed to nurture receptiveness to the rights of people with disabilities and promote positive perceptions and greater social awareness toward people with disabilities.[204] Further, States Parties must foster at all levels of the education system an attitude of respect for the rights of people with disabilities, encourage the media to portray people with disabilities in a manner consistent with the purpose of the convention, and promote awareness training programs regarding people with disabilities and their rights.[205]

Article 13 addresses access to justice by requiring States Parties to ensure effective access to justice for people with disabilities on an equal basis with others, including through the provision of procedural and age-appropriate accommodations to facilitate their effective role as direct and indirect participants, including as witnesses, in all legal proceedings, including at investigative and other preliminary stages.[206] Moreover, to help to ensure effective access to justice for people with disabilities, States Parties shall promote appropriate training for those working in the field of the administration of justice. As this report demonstrates, parents with disabilities face significant barriers to meaningful participation in dependency and family law proceedings. Article 13 will ensure their rights in these areas.

Parents with disabilities and their children often live in poverty. Article 28 addresses this critical issue by requiring States Parties to recognize the right of people with disabilities to an adequate standard of living for themselves and their families—including adequate food, clothing, and housing, and to the continuous improvement of their living conditions. States Parties shall take appropriate steps to safeguard and promote the realization of this right without discrimination on the basis of disability.[207] Further, States Parties must ensure access by people with disabilities and their families who live in poverty to assistance from the state with disability-related expenses, including adequate training, counseling, financial assistance, and respite care, as well as access to public housing programs.

Furthermore, the convention contains an array of provisions that emphasize the need for States Parties to develop and make available new technology as a critical component of equalizing the rights of persons with disabilities. These provisions are pertinent to adaptive baby care equipment.

Conclusion

The domestic disability rights legal framework in the United States, combined with the nation’s ratification of the CRPD, would send a clear message to the international community that the United States is not only committed but remains the leader in the global effort to promote disability rights, nondiscrimination, and equality for parents with disabilities and their children.