Call for Inputs: Care and support for children with disabilities within the family environment and its gendered dimensions

Issued by: Special Rapporteur on the rights of persons with disabilities

Deadline: 30 April 2025

Purpose: To inform the report of the Special Rapporteur on the rights of persons with disabilities to the 80th session of the General Assembly.

Background

Families play a fundamental role in providing care and support to children with disabilities, including protecting and promoting their rights and building capacities for independent living in their communities. This role often extends and evolves throughout the lifecycle, for both those providing and those receiving support, reflecting cultural values as well as insufficient formal systems for support and services.

In the absence of adequate support, reliance on families can significantly impact the realization of the rights of all family members. For children with disabilities (including when they become adults), it can result in overprotection, loss of control over decisions big and small, poverty and economic dependence, isolation, neglect, abuse, violence, and abandonment. Family members bearing the brunt of care and support tasks are more likely to experience poverty linked to reduced opportunities to pursue income-generating activities, limited opportunities for personal growth, isolation, and negative impacts on mental health.

Women, and particularly mothers of children with disabilities, disproportionately assume caregiving and support responsibilities. This is largely done in an invisible, unpaid, and unrecognized manner, and often without adequate support. These women and girls face distinct challenges to enjoy their human rights, an issue that has not received significant attention in studies on support to persons with disabilities and their families, gender equality, and the reduction and redistribution of unpaid care and support work.

Objectives

In her report, the Special Rapporteur aims to shine a spotlight on the challenges and barriers faced by families of children with disabilities, particularly mothers, and the related adverse impacts on the rights of persons with disabilities. To do so, she will unpack the connection between the Convention on the Rights of Persons with Disabilities, the Convention on the Elimination of All Forms of Discrimination against Women, and the Convention on the Rights of the Child, as the basis for gender-sensitive and disability-inclusive policies on families and care and support. She will further consider legal, policy and other measures that can adequately support them, particularly amid the growing international recognition for the need to establish comprehensive care and support systems that are human rights-based, gender-responsive, disability-inclusive, and age-sensitive.

Key questions and types of input/comments sought

To inform her report, the Special Rapporteur invites Governments, National Human Rights Institutions, independent monitoring mechanisms, civil society organizations and networks, including organizations of persons with disabilities and associations of parents, and other relevant stakeholders, to contribute by submitting information and comments on the following issues:

• How do societal and cultural norms and beliefs affect families of children with disabilities, particularly mothers?
• Experiences and support for parents during pregnancy and birth of a child with disabilities.
• Availability and accessibility of early identification and intervention, and early childhood care and development for children with disabilities.
• Challenges and good practices in family, child, gender equality, and social protection laws and policies, including those addressing the gendered aspects of caregiving and support and those formalising family care and support (e.g. through pensions, allowances, etc.).
• Information, support, and services available to enable families to meet their care and support responsibilities towards children with disabilities while respecting their rights and evolving capacities (e.g. access to inclusive education, quality healthcare, rehabilitation, assistive devices, personal assistance, housing adaptation, respite care, peer-to-peer and community networks, psychosocial support, etc.).
• Continuation and evolution of services and support along the lifecycle, particularly as children with disabilities reach adulthood and older age.
• How are families and persons with disabilities, including children, consulted on laws, policies and measures concerning care and support, including in the family environment.
• Availability and analysis of data on the needs and existing support to families of children with disabilities, including specifically on gendered aspects of care and support.
• Conduct of time-use and care surveys, and inclusion and results of questions related to the disability status of people providing and receiving care and support and people involved in self-care.