Disability rights-based approach to the care agenda

Iag, Stories | November 14, 2024

The urgent need to build and rethink care and support systems to address the care agenda is receiving increasing attention within international policy space, for example with the recent forum on ‘Transforming Care Systems’ hosted at the United Nations Headquarters, the care economy being included within the Secretary General’s ‘Common Agenda’, the Office of the High Commission of Human Rights’ (OHCHR’s) Report on support systems to ensure community inclusion of persons with disabilities. Unpaid care work is often viewed through a gendered lens however it also intersects profoundly with disability rights. For people with disabilities, the absence of adequate community-based support services often has a high impact on families… particularly on women and girls who spend up to two to ten times more on caring for a child, older person or person with a disability than men and boys.

  
This global reality calls for a rights-based approach to policies and programs that recognize unpaid care work and address the support needs of people with disabilities, aligning with the principles of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and the Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW).  

 

How does CBM’s work relate to care?

At CBM we have long been working to address this issue: firstly, our CBM Inclusion Advisory Group provides technical advice around support services and systems such as social protection in both programming and policy settings, informed by a holistic intersectional approach that considers the needs of women, unpaid carers, people with disabilities and their communities in all their diversity.  This work is also informed by and performed in parallel with CBM’s strong programming work which has long taken a strong focus on addressing support needs and a transformative approach to unpaid care work. To ensure good practice on this issue, CBM’s undertook a learning enquiry on Gender, Disability and Unpaid Care to highlight issues on this topic that CBM needs to be alert to, and provide strong case studies to learn from.  

The below is a high-level summary of what we know a disability rights-informed approach to unpaid care involves, and what next steps we see as needed to progress this agenda. 

 

Why community-based, culturally appropriate support services matter 

Community-based support services are a precondition to inclusion, enabling people with disabilities to participate fully in society. Without these services, people with disabilities are often unable to access opportunities, programs, and daily life on an equal basis with others. In many cases, family members—typically women—step in to provide care, often at the cost of their own economic and educational opportunities, which creates ripple effects impacting the entire family. 

It is essential that support services are designed with local people with disabilities and Organisations of Persons with Disabilities (OPDs) as central decision-makers and collaborators at every stage of program and policy development.

The needs of people with disabilities and their families—as well as gender roles—are highly contextual, making it crucial to avoid assumptions about solutions to prevent unintended harm. A localised approach recognizes that effective solutions often already exist within the community. Support services and/or networks that foster greater independence and provide options by enhancing rather than disrupting existing support systems can transform communities, break down negative stereotypes around disability, and enable people with disabilities to be active members of their societies. 

At CBM we see evidence of this time and time again.

One example is our project partner Chotanagpur Sanskritik Sangh (CSS) which operates in some of the most rural and remote regions of India. CSS bring women together for support networks to support each other in care work: by forming collectives, female carers are able to provide informal mechanisms for peer-to-peer support and child care. These strategies promote gender equality.  

CSS also realised that mothers were almost entirely responsible for caring for children with disabilities, and that this was having a huge impact on gender equality in the region. They worked to change perceptions by actively engaging fathers, mothers-in-law and other family members in issues that would otherwise fall to mothers.  

 

“During a meeting with a Fathers Group men spoke openly of the impact that their wives, who are MISSI members, have had on their own lives. This has led to a redistribution of household chores: cutting vegetables, assisting in food preparation, equal contributions in raising children – which in turn has led to men having more positive relationships with their children.”  

 

What else is needed to progress disability rights and the care agenda globally? 

• Policy development: until recently there has not been strong policy leadership integrating rights-based, disability-inclusive principles into policies addressing unpaid care work, although there is increasing recognition of the need for this – for example recent reports and discussions from the UN, OHCHR, UNPRPD and the United Nations Special Rapporteur on Disability. Donor commitments and leadership to begin implementation of recommendations from these reports and discussions are needed to bring about meaningful change. Any policy frameworks should support caregivers and uphold the rights and independence of people with disabilities. 
• Strengthened social protection systems:  Effective social protection enables people with disabilities autonomy and choice about their care needs, and allows their families, particularly women and girls, to share care responsibilities equitably and to participate in the workforce, education, and public life. Social protection policies that recognize unpaid care work and provide direct support to caregivers can support dignity and choice family cohesion, and enhance the wellbeing of both caregivers and people with disabilities. 
• Challenged stereotypes in policy and programming: in integrating disability considerations into the care agenda, it is essential that the discourse recognises people with disabilities as rights holders and contributors, rather than “burdens.” Discussions, policy dialogues and programming designs should centre disability as part of human diversity in all messaging and include strategies to break down negative stereotypes if needed. 
• Research and data collection: There is a need for research and data to better understand the intersection of disability, unpaid care work, and gender, to inform programs and policies. 

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