Parents of children with disabilities are looking for support

Dechen Dolkar

A thirteen-year-old girl attending Tendruk Central School in Samtse faces significant barriers due to severe disabilities, forcing her to live in a rental house near the school instead of the hostel, which does not adequately meet her intensive self-care needs can be met.

A group 4 student with a disability goes to this inclusive school. Her village is far from the school, so she has to live in a rented house. Her parents divorced when she was three and a half years old. For almost nine years she remained at home without clinical assessment, early intervention, medication or treatment.

Her maternal grandmother is currently her primary caregiver at school. She is considered one of the most serious cases among the students. Due to the high muscle tension in her hands and fingers, she cannot feed herself. In addition, she has no control over her bowels and bladder, which means she has to wear diapers all day long.

The School Special Educational Needs (SEN) team supports her through fundraising, which covers costs such as rent, provisions and nappies.

Similarly, a 13-year-old boy lives in a rented house close to the school due to the distance from his village. His parents divorced when he was three years old and his father, who also has speech and hearing problems, serves as his caregiver. Because his father cannot work due to caring responsibilities, their livelihood is completely dependent on donations.

Tendruk Central School has 64 children with disabilities, of which 47 are classified as severely disabled. Eighteen of them live in rented houses.

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

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

In addition, she said that parents often have to give up their farm work to care for their children year-round, which increases their financial problems and can even lead to divorce in some cases.

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

Tara Giri said some children with disabilities in rural areas are unable to attend school due to insufficient support from caregivers.

“For example, there is a seven-year-old boy whose parents have died and are now being cared for by his grandparents. Due to the severity of his condition, he requires constant supervision from a caregiver. This makes it impractical for his elderly grandparents to live in a rental house far from their home,” she said.

According to the National Health Survey (NHS) 2023, there are approximately 48,000 people with disabilities living in Bhutan. Most live in rural areas, where poverty and disability are often linked.

The study shows that children between the ages of 5 and 17 with disabilities constitute the third highest group among persons with disabilities in Bhutan, accounting for approximately 5.63 percent of the total, which amounts to approximately 2,700 persons.

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 social organization in 2020, is a parent support group that works to empower parents of children with disabilities. Many of these parents are single, have a low income or have had to give up 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 disorders.

The Phensem co-founder, who is also a parent of a child with a disability, said parents in similar situations face several challenges, including financial pressures and the need for caregivers. “Many parents are single, from low-income families or have had to give up their jobs to care for their children full-time.”

She said parents of children with disabilities often do not have the opportunity to choose the most suitable school for their children and must instead opt for schools that offer inclusive programs. “This inconvenience acts as a deterrent, sometimes causing parents to keep their children at home instead of 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 worsen their conditions. “Furthermore, some parents rely solely on teachers and hospitals to address their children’s challenges, but it is crucial that parents play an active role in improving their children’s conditions.”

Moreover, she said that children with disabilities grow into adults with disabilities. “Early intervention and education play a crucial role in promoting inclusivity, and it is important that parents recognize this,” she said. “Phensem is committed to promoting this change in mentality.”

She indicated that parents are also expressing concerns about their children’s prospects after graduating high school. While some children with disabilities can pursue vocational training, others cannot, leaving many unemployed at home after graduation. “If the government could provide skills training programs after high school, it would enable these children to actively participate in society and become independent,” she said.

She also highlighted parents’ concerns about their children entering puberty, reporting incidents from other countries where frustrated children with disabilities have even become physically aggressive towards their parents. “Parents must find solutions to address these challenges,” she said.

For inclusive schools

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

Currently, according to the Department of School Education, there are 1,000 students enrolled in these 44 inclusive schools nationwide. This enrollment indicates that more than half of eligible students with disabilities are still out of school.

Under the plan, the established inclusive schools will act as lead schools in their respective districts or municipalities. In addition, 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 ECCD and SEN Department official of the Ministry of School Education emphasized that the ministry is gradually establishing one or two inclusive schools in Dzongkhag and Thromde to improve inclusive and special education services across the country.

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

In addition, the department is working with UNICEF on several initiatives, including:

• Capacity building of teachers
• Review of policies and guidelines regarding inclusive education
• Purchase of tools and technology
• Setting up resource rooms
• Purchase of teaching materials

Carrying out awareness and information programs

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

The National Council also endorsed the recommendations of the Cultural Affairs Commission to strengthen policy implementation, improve access to education and health care, increase public awareness and ensure nationwide accessibility for people with disabilities.

Specific recommendations from the committee include providing housing for individuals with disabilities, offering disability benefits, prioritizing investments in special education teachers, reserving special government positions for individuals with disabilities, and exploring affordable transportation options outside Thimphu.

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

In partnership with UNICEF, Kuensel will publish a series of stories on issues affecting children and youth as part of the new country program cycle and emerging priorities.