Families of Children with Disabilities in Kailali Face Significant Caregiving Challenges

Kailali. Parents of children with disabilities are facing immense difficulties in providing care. The constant attention and time required for these children have significantly impacted the personal lives of their guardians.

Jagatmaya Shahi from Tikapur Municipality-1, Bangaun, has a daughter born with a disability. Since her 19-year-old daughter has been unable to move since birth, the family sought treatment in various hospitals across Nepal and India. With only limited movement in her left hand, Jagatmaya has dedicated her life to her daughter's care. "I am educated and could have worked, but I am forced to stay home to care for my daughter," she says. "She is not only physically disabled but also mentally challenged, which makes caregiving even harder. I am deeply worried about her condition and her future."

Jagatmaya worries about who will care for her daughter when she is no longer around. "She studied up to grade two, but as she grew older, it became impossible to carry her to school," she explains. "Schools are not inclusive; the lack of special teachers, materials, and accessible infrastructure means children like my daughter are deprived of education."

She notes that caring for girls with disabilities is particularly challenging, especially regarding hygiene and menstrual management.

Manoj BK from Tikapur faces similar struggles. Despite having lower-body paralysis, he managed to study up to grade 12. As he grew older, his mother could no longer carry him to school. "My parents took turns carrying me to school until grade 10," Manoj says. "As I gained weight, it became difficult for them to transport me."

"I studied for grades 11 and 12 at home and took the exams, but I eventually dropped out. I have a desire to study further, but commuting to college for exams and other tasks is very difficult."

While local municipalities, with the support of various organizations, provide assistive devices, these tools often break and are difficult to repair, offering only temporary relief.

Tikaram Dagaura, 21, from Joshipur-6, Lokhari, is an 11th-grade student at Birendra Vidya Mandir Secondary School in Tikapur. He lives in a rented room with his brother to pursue his studies. Despite his lower-body paralysis, he manages many tasks independently. However, when his only wheelchair breaks, he struggles to attend school. "The ward office provided this device with the help of an organization, but it breaks frequently, making it hard to get to school," he says. "The road to school is also very difficult; I can only reach it if my friends help me."

In Tikapur Municipality, 1,199 people have obtained disability identity cards. These cards are categorized into four groups, with 'A' and 'B' category holders receiving social security allowances. The municipality has 128 'A' category, 585 'B' category, 292 'C' category, and 194 'D' category citizens. The municipality began distributing these cards in 2076 BS.

Sangita Shah, head of the Women, Children, and Social Welfare Branch, states that the municipality coordinates with organizations to provide assistive devices. This year, they distributed devices to 29 school-going children under 25. "The municipality is preparing to distribute more devices to those in need," she says. "However, the poor condition of roads causes these devices to break quickly, and the lack of repair services remains a major issue."

She adds that girls with disabilities face greater caregiving challenges and safety concerns. Rights activist Nirmala Kadayat emphasizes that a lack of proper understanding of disability in society leads to discrimination and humiliation, which must be addressed.