The concept of Independent Living, alongside Community Support and Personal Assistant Services, signifies a significant evolution in societal perspectives and provisions for individuals with disabilities. This paradigm challenges the misconception that independent living implies complete self-sufficiency and instead emphasizes empowering individuals with disabilities to exercise choice and control over their lives, akin to their non-disabled counterparts. Within this framework, individuals with disabilities are recognized as the primary authorities concerning their own needs, asserting their entitlement to self-determination, cognitive independence, and the expression of personal preferences.
Critical to achieving independent living is the provision of personal assistance, representing a departure from traditional institutional care towards a model that promotes self-reliance and autonomy. Over several decades, numerous affluent nations have adopted this approach, acknowledging that genuine independence for individuals with disabilities depends on personalized assistance that respects their agency and promotes community inclusion.
Challenges in Nepal
However, in Nepal, the practical realization of this concept remains elusive despite its incorporation into national policies. The government of Nepal is pleased to claim that it is progressive in promoting the rights of persons with disabilities, asserting that it has provided disability ID cards, monthly social security allowances, increment of accessible physical infrastructures and has guaranteed these rights in the constitution and other relevant laws and regulations. However, critical issues such as personal assistance, community support services, counselling and referral services, community-based rehabilitation, and many more have been overlooked so far.
A sustained protest led by individuals with disabilities in Nepal has received limited attention, with awareness among the broader populace notably lacking. This obscurity can be attributed to the scant coverage of such matters by mainstream media and apparent disregard from key political figures.
Inclusive Election in Nepal
For instance, Dipak Bhandari, an individual with severe disability, recently undertook a hunger strike lasting approximately two weeks in protest. This demonstration garnered support from fellow individuals with disabilities and associated organizations, underscoring the pressing need to enforce community support and personal assistant services as outlined in both national and international legal frameworks ratified by Nepal.
The hunger strike initiated by Bhandari on Chaitra 6 concluded on Chaitra 14 following a three-point agreement with the Ministry of Women, Children, and Senior Citizens. This accord pledged to issue directives concerning community support and personal assistant services, with an implementation timeline slated for the year 2081 (Nepali calendar). Unfortunately, due to the failure to honor this commitment, Bhandari resumed his protest from Baisakh 18. Prior to this, he had staged four similar protests at the municipal level, consistently advocating for the same agenda.
This enduring struggle raises pertinent inquiries regarding accountability and the persistence of such advocacy endeavors. Who should be held accountable for the lack of progress, and how long must individuals endure such challenges before substantial change is effected?
The Interconnection of Independent Living and Personal Assistant Services
Why are Independent Living and Personal Assistant Services interlinked components crucial for the inclusion of persons with disabilities within the broader community? The Independent Living Movement (ILM) emphasizes that personal assistance must be under the control of the individual with disabilities, granting them autonomy over task delegation, choice of assistants, and the manner in which services are executed. However, this level of self-determination is often contingent upon financial resources, which are frequently lacking among individuals and families with disabilities. Consequently, government subsidies and payments play a pivotal role in enabling access to personal assistant services, ensuring that those in need can procure assistance from chosen providers or employ preferred individuals, including family members, as assistants.
The Importance of Community Support and Personal Assistance
The community support services may include services related to communication such as sign language interpreter and tactile interpreter, mobility support, assistance with daily living activities, housing and accommodation and family support.
For individuals experiencing severe and profound disabilities, access to personal assistance and community support plays a pivotal role in maintaining their quality of life. These services are indispensable, as they afford individuals the opportunity to live with dignity, exercise autonomy, and actively engage in daily activities. In the absence of adequate support, individuals might face the prospect of institutionalization, relinquishing their independence and autonomy.
Beyond the scope of intimate care tasks, personal assistance extends to a diverse range of activities across various settings to enable independence and community participation. This support encompasses tasks within domestic environments, such as parenting and caregiving responsibilities, as well as activities in educational institutions, workplaces, and public spaces, including transportation, shopping, and banking. Furthermore, personal assistants may be called upon to deliver emergency or respite services. Regardless of the formality of the assistance—whether informal or formal—its quality and sufficiency are paramount to ensuring the dignified participation of persons with disabilities within their families and communities.
Legal Provisions and Way Forward
The Convention on the Rights of Persons with Disabilities (CRPD), Article 19, emphasizes that all persons with disabilities have the right to live independently and be included in the community, with choices equal to others. Similarly, Nepal's Act Relating to Rights of Persons with Disabilities, 2017, articles 9 and 18, and its regulation, 2020, Rule 9, mandate the same provisions. These laws ensure that persons with disabilities can live with dignity, participate fully in society, and avoid isolation or segregation.
Demanding community support and personal assistant services is not an irrational request. These services are clearly mentioned in existing laws and regulations, obligating the government of Nepal to provide them. According to the Constitution of Nepal and the Local Government Operation Act, 2017, protecting persons with disabilities is primarily the responsibility of the local government. Currently, local governments may be unwilling to provide these services, but the federal and provincial governments must hold them accountable. Additionally, the federal government must allocate the budget and transfer it to all local governments with proper instructions and guidance. The implementation process will be easier and smoother if done in partnership with organizations of persons with disabilities.
Conclusion
In conclusion, the solicitation of community support and personal assistant services by individuals with severe and profound disabilities represents a fundamental necessity rather than a discretionary request. The government possesses the capacity to tailor the framework for community support and personal assistant services in accordance with regional and economic variables; nevertheless, it cannot overlook this critical matter or disregard associated activism. It is imperative that all human rights organizations ostensibly devoted to the promotion of human rights and dignity demonstrate solidarity in this context. Failure to do so risks exposing their espousal of inconsistent principles.
