Education of Children with special needs ‘forgotten’

By Gloria Lalam
It’s nearly two years since the Ugandan government closed down schools as a measure to prevent the spread of the COVID-19.

For ten-year-old Nazima Akanyo who has a hearing and speech disability, the prolonged school closure has meant additional stress and isolation. Reason? She has nobody other than her mother, 25-year old Aparo Rose Ajute, to look after her or play with her since the children in their Layibi industrial area, Bardege Layibi division Gulu city neighbourhood tease and make fun of her status. Most times, she is left alone as her mother has to go out to find casual jobs to support them. Children in the neighbourhood refuse to play with her due to the stigma associated with her disability.
The distance learning programme (radio and television lessons) initiated by the government has not been useful either since she cannot follow the radio lessons.
Her mother, a P4 dropout is not able to assist her either as she does not understand the concepts.

Akanyo is just one of the estimated 150,559 children (majority of them boys 82,537) with disabilities who are at risk of missing out on their primary school education as the government’s closure of schools continues. The universal free primary education which was introduced in 1997, caps the benefit to four children per family.
In families where there are more than four children, those who are able-bodied are prioritised over their siblings with disabilities due to inherent stigma and misconceptions surrounding disability. Educating girls with disabilities is also not prioritised in many families and that is why only 68,022 of them are admitted in primary education.

Without specific and targeted interventions to help children with disabilities continue with their education, the closures are exacerbating an already difficult situation. Not only does the country lack adequate education facilities or opportunities for children like Akanyo, but there are not enough teachers to provide instructions. There are also no resources available to help such children continue with their education or participate in the distance learning programme.

Other than allowing learners who were scheduled to write their final year exams, the continued closure of schools has and will continue to have a severe and long-lasting impact on education in the country. The situation is specifically difficult for children with disabilities who, even in the pre-COVID-19 period, had limited access to education or even skills training that would make them independent and contribute to their own, and their community’s wellbeing.

Akanyo’s disability has spurred her mother to double her efforts at the casual jobs she gets so that she can try and help her daughter continue with her education so that she can have a better life. Ostracized by her family for giving birth to a child with a disability, Aloyo has to deal with neighbours who deride her for her child’s disability.

“I wish the schools would open so that Nazima can go to school. I worry a lot about her missing school. She is growing older. The years are not waiting for her. What will happen to her if she does not continue with her education? What can l do with an uneducated child and more so a disabled one? I do not want her to depend on casual jobs as l do. It is going to be extremely difficult for her. Her happiest moments are when she is in school where she gets to meet children of her status because they know how to communicate and also treat her very well,” Aloyo says of the special school her daughter attends.

But she is determined to help her daughter keep up with her studies. Aloyo has started taking weekly lessons from the teachers at the special needs school so that she can help Akanyo with her school work.
“I have also learnt how to communicate with her and my sign language is getting better,” Aloyo says.
Akanyo is also learning how to do domestic chores so that she can help her mother who sometimes has to leave her alone at home whenever she gets casual work.
Aloyo is among the few parents who receive school-related support from the government as Akanyo is on a scholarship.
Other children
For Aparo Rose Ajute, the prolonged school closure has been a kind of mixed blessing. Reason? She is able to take care of her 15-year old son Ocen Rogers Paul who has Cerebral Palsy which is a problem that affects muscle tone, movement, and motor skills.

Like many other children, Paul who is a class 4 pupil at Thumbs Up Academy, has been at home since the government closed more than a year ago. Ajute said even though she is concerned that her son is missing out on his education, she is happy that he is at home.
“I was so worried at first. He was so sick when he came home and l thought it was corona since many schools were not disclosing illnesses among the students. I was relieved when he was diagnosed with Malaria,” said Aparo.
Her concerns are well-founded since people with Cerebral Palsy are considered to be at a higher risk of serious infections if they get COVID-19 and should take extra precautions. This is because the diaphragm, the muscle that helps you breathe, is usually compromised by Cerebral Palsy.
Her biggest challenge is helping her son to cop up with the stigma from his peers within the neighbourhood.
“They are constantly nagging him because I still have to bathe him since he is not able to do it himself. He has become depressed and withdrawn because of this,” says Aparo.

Unlike at home where he has some slight independence as he is able to access the toilet with his wheelchair, Rogers is forced to always ask someone to help him whenever he is at school.

The children in the neighbourhood have also damaged the wheelchair through rough play. Aparo has no resources to repair the wheelchair and has sought help from the government to no avail.
She and other parents in the neighbourhood who have children with disabilities organised themselves into a support group and have unsuccessfully tried to access the funds from the Presidential initiative on job and wealth creation Emyooga.

“The government should help provide financial support to offset some of the school-related expenses so that we can help our children continue with education even if it is at home,” says Aparo.
Recommendations?

A universal direct income support programme for children and for persons with severe disabilities should be initiated to assist people like Aparo, Apolo and others, according to a recommendation in a technical brief on the State of Social Protection in Uganda in response to COVID-19 presented by Akina Mama wa Africa, a feminist Pan-African leadership development organization.
Across the city at St Jude orphanage located at Airfield Sub-Ward, Bardege Division, Gulu city. The home has been a sanctuary for children with disabilities who have been abandoned by parents due to stigma, poverty and fear. At the home, these children are encouraged to study and are provided with wheelchairs and other mobility equipment.
Nine-year-old Acol is severely disabled and was abandoned at the home when she was just a baby. Acol needs constant care as she has not met any of the milestones that other children her age have made.

Lalam Catherine explains that it was easier for her when schools were open because she had the time to give her full attention to Acol.
“With schools closed and all the children at home, l have little time to attend to Acol as l have to attend to all the children under my care.”
Several of the 108 children at the home have various kinds of disabilities such as Cerebral Palsy, spinal cord and brain injuries, severe epilepsy, hearing, speech and physical disabilities among others.
The home was founded by Brother Elio Croce, a Comboni missionary who died from COVID-19 in November 2020. Bro Eliother, who was known for his active peacekeeping efforts in Gulu was the sole benefactor of the home.
“Things have become really difficult as we are struggling to meet our operational expenses. We are now dependent on people of goodwill to support the home and continue the work that Brother Elio started, “says Lalam.
Recently, the home received donations of assorted food items, fruits and laundry detergents from Uganda People’s Defense Forces (UPDF) Brigadier General Bonny Bamweseki.
Although the children are supposed to stay at the home until they reach 15 years old when they are supposed to return to their homes, many of them are not able to leave as their families refuse to accept them back.

“Some of these children have nowhere else to call home as their parents have died, others have abandoned them and want nothing to do with them because of their conditions.
“On average, we receive two to three children, some of them newborns who have been abandoned in the hospital, by the roadside or even in garbage dumps just because they have a form of disability,” Lalam says.

Interventions.
Patrick Ojok, the centre coordinator of the Gulu Disabled Persons Union (GDPU) says that while the government has provided some support for children and persons with disabilities, it has not been enough. Instead, his organisation has been dependent on donations and support from local and international organisations that have provided assistive and mobility devices for those with physical disabilities.
A US-based foundation— the Arthur B. Schultz Foundation— has been donating 20-wheelchairs every year to rural women and schoolchildren with disabilities.
Another charity, the Motivation Charitable Trust supports a local company to manufacture the wheelchairs. So far 60 children have received wheelchairs in the programme which has this year expanded to include rural women with disabilities.

Despite this support, Ojok says there is still a huge shortfall in terms of the support that the children and their families as well as other people with disabilities are receiving.

“For example, World Vision International has provided crutches for 50 children with disabilities but we have not been able to get white canes for those who are blind. We cannot get supplies since the corona started,” Ojok says.
In an attempt to alleviate some of the concerns that parents like Aparo, the Gulu Disabled Persons Union (GDPU) initiated a programme to build accessible toilets in primary schools. The union’s plan to build three wheelchair-accessible toilets for children with disabilities at St Martin Lukome primary school year has been put on hold due to the COVID-19 restrictions and also because the union has not been able to rise the UGSh21 million (USD5,917) that is needed to complete the project.

The union has so far built and equipped wheelchair-accessible toilets in four schools— Tochi primary school in Omoro district at a cost of UGSh16 million Abaka primary school in Palaro sub-county Gulu district, Awach Central primary school Gulu district (13 toilets at a cost of UGSh35 million and three toilets in a school in Unyama sub-county Gulu at a cost of UGSh18 million.
The toilet facilities are built in collaboration with the school’s management committees, the parents and the local community.
Disadvantaged at education
To ensure children do not miss out on their education due to the prolonged closure of schools, the government introduced home-based learning through radio and television programmes. But these interventions have not helped these children.
“These interventions have ignored some children with special needs especially those with visual disabilities as there are no braille learning materials that are accessible to parents as most of these materials are in schools,” Ojok says.
Lack of access to radios, television, computers, the internet, and data has also left many learners with disabilities unable to engage in remote learning.

Caregivers with low levels of formal education are also unable to give the children the support that they need with home learning. This is the challenge that faces parents like Aparo who has to go out to seek casual work every day to be able to support herself and her daughter. She did not go past Class 7 and would not be able to instruct or help Nazima even if she wanted as she does not understand many of the concepts that are in the school curriculum.

Inadequate learning and teaching materials and few qualified teachers in schools like Gulu primary school has greatly impacted on the education of children living with disabilities.

Teachers have now resorted to using ordinary manila cards instead of braille paper to prepare lessons and reading materials.
But Ojok is concerned that many of the children with disabilities who are currently unable to attend school will drop out when the schools eventually reopen.
This is because parents do not prioritise the education of children with disabilities.
The few openings available in the few secondary schools for those with visual or hearing disabilities will also lock out many of the children who have finalized their primary education and are waiting to transition to secondary school.

“Many of these children will also lose any knowledge or learning that they acquired before the school closure. It will be extremely difficult for them to catch up,” he says.
He suggests that the government should provide remedial education for all children and should especially focus on children with disabilities, those living in poverty, those in the rural areas and girls who are most at risk of being excluded from accessing education.
In addition, those offering remote learning should make an effort to reach out to children with disabilities and provide them with the learning materials that they need to re-engage with their education.
“Not one size intervention fits all children. We need to make an extra effort to ensure learners with disabilities can continue with their education,” he says.
Immaculate Nalubiayi, a senior advocacy and communications officer at Save the Children organisation says a survey of 10 schools they have been working with indicates that access to education for children with disabilities is limited despite the deliberate policy, deliberate construction of schools and awareness campaigns conducted in communities to urge parents to send their children with disabilities to school.
The 10 primary schools also lack proper facilities such as ramps, wheelchair-accessible classrooms for children with disabilities. They are also not properly resourced as most of them do not even have a special skills teacher despite this being a government policy.
Distance learning?
The prolonged closure of education institutions has not only affected learners with disabilities.
Distance learning introduced in Uganda has not been very effective as many of the learners need a teacher’s intervention to be able to understand some of the concepts. Many of the radio lessons are also not specific for each level of class.

The prolonged closures continue to exacerbate previously existing inequalities and children with disabilities who were previously most at risk of being excluded from a quality education are most affected. Delaying the reopening of schools reduces the chances of children with disabilities accessing an education.

This article was produced by the Africa Women’s Journalism Project (AWJP) in partnership with The ONE Campaign and the International Center for Journalists (ICFJ).

COVER PHOTO: An estimated 14 percent of children aged between 10 to 14 years in Uganda present with a hearing impairment and face a challenge of enrolling for primary education. Courtesy photo by Gloria Lalam