Caregiving Service For Persons With Disabilities

Persons with severe and profound disabilities and their parents have been continuously staging demonstrations in Kathmandu for more than two months to draw the government attention to their single-point demand for caregiving services. The government’s apathy is responsible for this situation of prolonged agitation. The disabilities in question encompass a range including deaf-blindness, cerebral palsy, autism spectrum disorder, down syndrome, intellectual disability, psychosocial disability, multiple disabilities, and spinal cord injury who desperately require caregiving assistance for their day-to-day functioning to varying extents. The current trend of families transitioning to nuclear units results in a significant reduction in available caregivers for those in need. The growing number of elderly individuals in need of assistance, alongside an increasing population of persons with severe and profound disabilities, underscores the pressing need for introducing community-based professional caregiving services in the country. 

While recent years have seen an allocation of services, facilities, and opportunities by the government and others for persons with disabilities, these have yet to address the plights of those with severe and profound disabilities encompassing those disabled persons residing in remote areas. As repeatedly highlighted by the National Human Rights Commission and various media outlets, a significant number of children and adults in this category of disability endure unimaginable hardships, including confinement, torture, physical and sexual abuse, along with inadequate access to food and hygienic living environments across the country. These circumstances flagrantly violate their human rights and underscore the urgent need for reliable caregiving services.

Caregivers take on a wide range of responsibilities beyond daily tasks, such as boosting confidence, building self-care skills, integrating into family and community, and creating a supportive, nurturing environment. They play a crucial role in enhancing the functional abilities of individuals with various types and severities of disabilities.

In Nepal, the caregiving role is primarily shouldered by women and girls --mothers, sisters, wives and grandmothers -- who are already burdened with household chores and livelihood-related activities. It clearly vindicates  state intervention  is needed   for regulating the services.  The situation is worse when multiple members within a particular families   are in need of receiving care giving service. This burden is compounded by the lack of skill development opportunities for these caregivers.  

Taking  this dire situation into account, the ongoing agitation in Kathmandu, spearheaded by Mr. Deepak Bhandari, who himself faces severe disabilities and is unable to perform basic activities such as feeding and toileting without external assistance, involves various peaceful protest actions vis-a-vis Dharna, relay hunger strikes, press meets, rallies, and lobby with the government ministries, including the Ministry of Women, Children and Senior Citizens, Ministry of Finance, and Human Rights Commission lasting over two months. Individuals' rights activists, along with disability-related organisations including the National Federation of the Disabled Nepal, have voiced strong support for the ongoing demand. 

 In response, the Ministry of Women, Children, and Senior Citizen (MWCSC) has committed  in writing to hire and mobilise 11 caregiving assistants as an immediate measure, with implementation slated within a 15-day timeline.  This commitment has temporarily halted demonstrations until the deadline passes.

However, the agreed-upon measures have yet to be implemented, leading to frustration among the agitating group. The government's  dilly-dallying in fulfilling its own commitments has reignited the struggle, with the group exerting pressure on the government to uphold its agreed-upon commitments promptly. The prolonged campaign and protests are particularly challenging for individuals with severe and profound disabilities due to their mobility restrictions, poor health conditions, the severity of their disabilities, and financial constraints. 

 This situation is deteriorating further   as the state uses force against protesters, aiming to suppress their legitimate campaign rather than engaging in dialogue and addressing their demands in a justifiable way. Instead of providing justice for the disadvantaged, the state's actions have been leading to assaults on disabled individuals. Consequently, many have been tortured, injured, arrested, and hospitalised at this stage, which is shameful for a democratic government.

Providing caregiving services is not a new or unheard-of issue for the government's disability focal points, especially at the federal level, as certain organisations advocating for persons with disabilities have been pushing for it for several years.

Nepal is a signatory to numerous international human rights agreements and conventions, including the UN Convention on the Rights of Persons with Disabilities (UNCRPD). These legislations aim to safeguard the fundamental human rights of all citizens on an equal basis. The UNCRPD specifically sets persons with disabilities the right to choose their place of residence and “decide where and with whom they live, ensuring they are not compelled to reside in a particular living arrangement”.

Article 19(B) of the convention mandates state parties to provide a range of in-house, residential, and other community support services, including personal assistance, necessary for persons with disabilities to “live independently and be included in the community”, thereby preventing isolation or segregation. Additionally, this article ensures that “community services and facilities available to the general population are equally accessible and responsive to the needs of persons with disabilities”. 

Moreover, the Constitution of Nepal, 2015   envisions inclusivity and social justice and ensures the right of    each citizen to enjoy equality, non-discrimination and living with dignity as a fundamental right. Persons with disabilities are entitled to enjoy these rights on an equal basis with other citizens by virtue.

The Act Related to Persons with Disabilities (ARPD) 2017 enshrines various rights aimed at enabling persons with disabilities to lead dignified and productive lives. Specifically, Article 9 and Article 18 of the ARPD emphasise the right to assistance for mobility and independent living within communities. Furthermore, directives regarding the provision of caregiving services for needy persons with disabilities, along with their operational procedures, have been drafted under the initiative of the MWCSC in previous years. 

However, these directives are currently awaiting approval from the cabinet, rendering aforesaid legal provisions ineffective in improving the lives of deserving individuals. Consequently, the government is obligated to fulfill the demand of the protesting persons with disabilities by swiftly implementing the already signed agreement and commitment. The approval of the new directives and operational procedures, as well as the introduction of trained caregiving personnel, are crucial in this juncture. Proactive and constructive involvement of the protesting group can help the government make practical and implementable decisions, especially targeting the most vulnerable.  

 Commencing services with a certain number of people and gradually expanding them could be a financially viable approach. Given the growing   need felt of caregiving services and human resources, it is sensible for each municipality to introduce caregiving services to address the predicament of the local population in a viable fashion. 

This initiative not only supports those in greatest need but also creates job opportunities for local youth. In the context of ongoing protest, both parties – the state and agitating group --   are to hold responsibility to undertake measures before causing further sufferings physically and psychologically. 

(The author is a human rights and disability rights activist.)