YK Poudel

Haa— Kadrup Tshering, a 15-year-old from Gakiling in Haa, experienced a significant loss of autonomy at the age of four due to epilepsy. Now, his 65-year-old aunt, Lepchum, serves as his primary caregiver, providing essential support in his daily life.

This story was shared at a recent “Sensitisation Workshop on Disability to Strengthen and Expand the Support Group for Families or Caregivers of Children with Disabilities,” organised by the Ability Bhutan Society (ABS), a civil society organisation.

Lepchum recounted that Kadrup was admitted to a monastic body (gelong) in four different locations, with his longest stay being two years during the pandemic. “Since then, he has been with me, and his disorder has significantly impacted our daily lives.”

She expressed deep concern for Kadrup’s future: “He was not like this before; his mother made him a person with a disability. After I die, there will be no one to look after him.”

Lepchum faces her own economic challenges and health issues.

“His disorder has left me ill, as I prioritise caring for him over my personal health,” she said.

The societal pressure they endure is considerable; Lepchum shared that people in their community often refer to Kadrup derogatorily, calling him “psycho” and depriving him of opportunities.

“Taking him to Thimphu feels like an impossible dream,” she said.

However, she believes that the government can play a vital role. “The government should initiate a fund for persons with disabilities (PWDs) and their caregivers, ensuring that caregivers are supported and that PWDs have access to basic amenities.”

Dechen Wangmo Drukpa, another participant and mother of children with disabilities in Bebji, echoed these concerns. “The government and relevant agencies need to create an inclusive society that advocates for the rights and needs of PWDs.”

“While the assistance from agencies has helped ensure my daughter’s well-being so far, the long-term challenges must also be considered,” she added.

Wangmo shared her daughter’s journey: “Initially, she was unable to hear at all. Now, with a hearing aid, she can hear and understand to a modest level.”

Wang Tshering, the gup of Gakiling Gewog, highlighted the unique challenges faced by persons with disabilities (PWDs) in remote areas. “In villages that are not easily accessible, advocacy and awareness programs are essential.”

He noted that Gakiling has about seven individuals with paralysis and over 30 individuals with various forms of disabilities, including children and senior citizens.

Speaking from personal experience, Wang Tshering said, “My mother has been paralysed for over ten months.” He emphasised that issues such as inaccessible banking services, neglect during religious events, and difficulties accessing office structures must be addressed at the ground level to facilitate national change that encourages PWDs and caregivers.

While Gakiling Gewog has some accessible infrastructure, including a school, health center, gewog office, and RNR center, many facilities remain inaccessible.

The Ability Bhutan Society (ABS) conducted its sensitisation workshop in Gakiling Gewog, as well as in Bebji, Sangbaykha, and Soe Gewog in Thimphu between October 18 and 25, with over 175 participants in attendance.

Namgay Dorji, programme and project manager of ABS, stated that the goal of the awareness and advocacy program was to form a family support group that includes all relevant agencies and parents. “The forum provides a platform for parents, caregivers, and agencies to collaborate, facilitating access to services while creating awareness of the rights and protections for PWDs,” he explained.

ABS aims to address not just physical disabilities but also mental health issues. “The awareness campaign primarily targets young people to promote good health and well-being,” he added.

Currently, ABS provides one-on-one interventions for children with disabilities using adapted materials and equipment, along with home-based services. The organisation is supporting 56 students with the assistance of seven instructors.

Founded on April 6, 2012, ABS is a public benefit organization led by parents of children with disabilities, with the Gyaltsuen as the royal patron.

According to the National Health Survey of Bhutan, there are 48,325 PWDs across the country, accounting for 6.8 percent of the total population.

In response to community needs, the government has pledged to provide adequate funding to schools for the disabled to improve infrastructure, upgrade curricula, and enhance access to teaching materials. Additionally, they plan to support parents of PWDs through flexible working hours, the employment of domestic helpers, and specialised training for caregiving.

Furthermore, the government has committed to implementing the provisions of the Convention on the Rights of Persons with Disabilities (CRPD), including guidelines for accessible infrastructure and strengthened health check-ups to detect and prevent disabilities in infants.

Moreover, the government has promised to increase the number of schools for children with special needs to ensure uninterrupted access to education for these children.