Students living with disabilities in Mbale struggle to find services 

 Some of the mothers with children suffering from hydrocephalus at Cure Hospital in Mbale  City last year. PHOTO | FRED WAMBEDDE

What you need to know:

  • Ms Hope Nasubo, 18, a Senior Four student, who was born with spina bifida, at the weekend told Daily Monitor that the government should enforce construction of ramps with rail placements in all schools to ensure inclusive education.

Lack of infrastructure for pupils and students living with disabilities in Mbale City has continued to hinder their education.

Many schools lack standardised ramps, clean intermittent catheterisation pit-latrines, among other facilities.

Ms Hope Nasubo, 18, a Senior Four student, who was born with spina bifida, at the weekend told Daily Monitor that the government should enforce construction of ramps with rail placements in all schools to ensure inclusive education.

“Life is difficult for pupils and students  living with disabilities, especially those with mobility and toileting challenges in schools that do not have such facilities,” she said.

“The main entrance to schools should be made more accessible by fixing a concrete bench and the  walkways  joining  classes. The kitchen areas should be made accessible by wheelchairs,” she said.

Spina bifida is a birth defect that occurs when the spine and spinal cord do not form properly.

Mr George Wakooli, 21, a resident of Mooni in Mbale City, who was born with hydrocephalus defect, said the government should not neglect them.

“The general school environment is still unsafe for us. Some ramps and verandas are unsafe without rails,” he said.
Hydrocephalus is a condition that occurs when fluids build up in the skull and cause the brain to swell.

Ms Jackline Ahimbisibwe, the team leader of eastern Uganda Spina Bifida and Hydrocephalus Network, said some government-aided schools have ramps but they are not up to standard.
“Some schools have ramps but they are not of required standard to ease accessibility of pupils and students with disabilities. There is more work to be done,” she said.

Ms Ahimbisibwe said they have so far supported infrastructure modifications in four schools in Mbale to ease accessibility for children living with disabilities.

“The modifications are to  ensure comfort and safety for children with mobility and toileting challenges as they move around the school facilities,” she said, adding that ramps were completed with all borderlines placed in the schools.

The beneficiaries include Wokukiri Primary School in Busiu Sub-county), Makhayi Primary School (Busoba sub -county) , Nyondo Demonstration Primary School (Nyondo Sub-county) and Nauyo Primary School (Nambale sub county).

Mr Muhammed Mugoya, the inspector of schools in Mbale City, said the government is trying to ensure that schools have ramps and other required facilities.

“The government has tried to put ramps in some schools but most of the private owned schools are doing badly because some of them operate in rented buildings,” Mr Mugoya, said.

He said the government has also continued to put special needs schools  across the country through affirmative actions to promote an inclusive environment for children with disabilities.

 However, Ms Monica Nyawere, a human rights activist, said it is government’s responsibility to ensure that the rights of children born with disabilities are fully respected and protected.

“There are parents with such children, who have continued to hide them and have also denied them medication. Such parents should be arrested and prosecuted,” she said.

 Mr Micheal Ogwal, the medical officer attached to Cure Children’s hospital, said children born with spina bifida and hydrocephalus have academic potential like any other child.

 Sensitisation
He, however, said there is need for massive sensitisation about the conditions because most people in the villages still think it is a result of curse.

“We urge the government and other concerned stakeholders to conduct massive sensitisation because many of parents with such children have denied them medication and left them to die due to lack of knowledge,” Mr Nazeba, said.

 Each year Cure Children’s hospital of Uganda provides more than 1,500 life-saving surgeries for children while caring for more than 7,500 outpatients. 
 Each child with hydrocephalus and spina bifida conditions requires Shs950,000 for surgery and treatment.

Research, which was conducted by Cure Hospital and conservative prevalence rates from the National Institute of Health, indicates that between 3,600 and 5,400 children in Uganda are born with or develop the condition of hydrocephalus every year.