Dechen Dolkar

A thirteen-year-old girl attending Tendruk Central School in Samtse confronts significant hurdles due to severe disabilities, compelling her to live in a rented house near the school instead of the hostel, where her intensive self-care demands cannot be adequately met.

A fourth-grade student with disabilities attends this inclusive school. Her village is distant from the school, requiring her to live in a rented house. Her parents divorced when she was three and a half years old. For nearly nine years, she remained at home without receiving clinical assessment, early intervention, medication, or treatment.

Her maternal grandmother currently serves as her primary caregiver at school. She is considered one of the most severe cases among the students. Due to high muscle tone in her hands and fingers, she is unable to feed herself. Additionally, she lacks control over her bowel and bladder, requiring her to wear sanitary diapers throughout the day.

The School Special Educational Needs (SEN) team supports her through fundraising efforts, which cover expenses such as rent, provisions, and diapers.

Similarly, a 13-year-old boy resides in a rented house close to the school because of the distance from his village. His parents divorced when he was three years old, and his father, who also has speech and hearing difficulties, serves as his caregiver. Since his father is unable to work due to caregiving duties, their livelihood depends entirely on donations.

Tendruk Central School has 64 children with disabilities, with 47 of them classified as having severe disabilities. Among these, eighteen students reside in rented houses.

According to the Special Education Teacher coordinator, Tara Giri, children with severe disabilities cannot manage in the school hostel because they need constant care, and their caregivers cannot stay in a hostel. While the rented houses are not designed to be accessible, they remain the only viable option for these students.

“Many parents, often low-income and single, struggle with financial burdens and cannot afford rent and daily expenses. Donations help cover these costs,” she said.

Furthermore, she said that parents often have to forgo their agricultural work to care for their children year-round, adding to their financial difficulties and, in some cases, leading to divorce.

She also mentioned that in the hostel, moderately disabled children are cared for by their peers voluntarily.

Tara Giri said that due to insufficient caregiver support, some children with disabilities in rural areas are unable to enroll in school.

“For instance, there’s a seven-year-old boy whose parents have passed away and is now cared for by his grandparents. Because of the severity of his condition, he needs constant caregiver supervision. This makes it impractical for his elderly grandparents to live in a rented house away from their home,” she said.

According to the National Health Survey (NHS) 2023, there are approximately 48,000 persons with disabilities living in Bhutan, with a majority residing in rural areas where poverty and disability are frequently interconnected.

The survey highlights that children between the ages of 5 to 17 with disabilities constitute the third-highest group among persons with disabilities in Bhutan, comprising about 5.63 percent of the total, which equates to approximately 2,700 individuals.

Furthermore, the report identifies Wangdue Phodrang, Samtse, and Sarpang as the districts with the highest rates of multiple disabilities.

Support group

Phensem, registered as a Civil Society Organization in 2020, is a parent support group dedicated to empowering parents of children with disabilities. Many of these parents are single, low-income, or have had to leave their jobs to care for their children.

Currently, Phensem has approximately 400 members and focuses on supporting families dealing with both physical disabilities and neurodevelopmental conditions.

The co-founder of Phensem, who is also a parent of a child with disabilities, said that several challenges faced by parents in similar situations, including financial strains and the necessity for caregivers. “Many parents are single, belong to low-income households, or have had to leave their jobs to provide full-time care for their children.”

She said that parents of children with disabilities often lack the option to choose the most convenient school for their children and instead must opt for schools offering inclusive programmes. “This inconvenience acts as a deterrent, sometimes leading parents to keep their children at home rather than sending them to school.”

She also said that some parents classify their children as incapable and choose not to send them to school, which can exacerbate their conditions. “Additionally, some parents rely solely on teachers and hospitals to address their children’s challenges, but it’s crucial for parents to take an active role in improving their children’s conditions.”

Furthermore, she said that children with disabilities grow into adults with disabilities. “Early intervention and education play a vital role in promoting inclusion, and it’s important for parents to recognise this,” she said. “Phensem is dedicated to fostering this mindset shift.”

She mentioned that parents also express concerns about their children’s prospects after completing high school. While some children with disabilities can attend vocational training, others cannot, leaving many idle at home after graduation. “If the government could offer skill training programs after high school, it would enable these children to actively participate in society and achieve self-reliance,” she said.

Additionally, she highlighted parental worries about their children entering puberty, noting incidents from other countries where frustrated children with disabilities have even become physically aggressive towards their parents. “Parents are left to find solutions to address these challenges,” she said.

For inclusive schools

In the 13th Five-Year Plan, approximately Nu 1.08 billion has been allocated to support inclusive education programs in Bhutan. This funding will cover initiatives such as teacher training, the construction of disabled-friendly infrastructure, and the training of Paralympic athletes. The plan aims to increase the number of inclusive schools from the current 44 (expected to reach 48 by July) to 120.

Currently, there are 1,000 students enrolled in these 44 inclusive schools nationwide, according to the Department of School Education. This enrollment indicates that more than half of eligible students with disabilities are still not attending school.

Under the plan, the established inclusive schools will serve as lead schools in their respective districts or municipalities. Additionally, each district or municipality will propose and develop 3 to 4 satellite inclusive schools to expand access and support for students with disabilities across the country.

The official from the Department of School Education’s ECCD and SEN division emphasized that the ministry is progressively establishing one to two inclusive schools in each Dzongkhag and Thromde to enhance inclusive and special education services nationwide.

“Improving quality services requires time, ongoing commitment from the government, the public, and all stakeholders, including positive attitudes from parents, leaders, and decision-makers,” the official stated.

Furthermore, the department collaborates with UNICEF on various initiatives, including:

• Capacity building of teachers
• Reviewing policies and guidelines related to inclusive education
• Procuring assistive devices and technology
• Establishing resource rooms
• Procuring teaching-learning materials

Conducting awareness and advocacy programmes

These partnerships and efforts aim to strengthen inclusive education practices and support for children with disabilities in Bhutan.

The National Council also endorsed the Cultural Affairs Committee’s recommendations to strengthen policy implementation, improve access to education and healthcare, raise public awareness, and ensure nationwide accessibility for persons with disabilities.

Specific recommendations from the Committee include providing housing allotments for persons with disabilities, offering disability allowances, prioritising investment in Special Educational Needs teachers, reserving designated government positions for persons with disabilities, and exploring affordable transportation options beyond Thimphu.

Meanwhile, until these recommendations are implemented, children with disabilities, such as the students at Tendruk Central School, will continue to rely on the support provided by their caregivers and special education teachers.

In partnership with UNICEF, Kuensel will publish a series of stories on children’s and young people’s issues as part of the new Country Programme Cycle and emerging priorities.