This article was first published in the New Vision on March 24, 2021
By Conan Businge
A physical therapist from Northeastern University training a child on how to stand at Tunaweza Children Centre, Kiwatule, Kampala, recently. Statistics from the education ministry show that there are 172,864 children with special needs in primary schools, which is 2.0% of total primary level enrolment and 9% of the overall children with special needs. Out of 1,370,583 students enrolled in secondary school in Uganda, 8,945 students (0.6%) have special learning needs.
Pamela Titi Kakonge could have been an advocate in Uganda’s Courts of Law. She had initially not trained as a teacher or health practitioner.
However, the call of a mother with a child whose life is at risk, prompted Kakonge to change her career path. She diverted from law to helping children with special needs.
Kakonge was helped in ensuring that her child gets occupational, physio, speech and language therapy. She needed to be readily available to help her daughter and thus Kakonge could not have a stable job.
Every other three months, Kakonge would travel in the region and the country to solicit support. She discovered that her daughter has a learning disability. She requires special care and treatment.
After trying everything medically possible in Uganda and was at her wits’ end, she got help from friends abroad. Kakonge’s effort paid off as her daughter is now thriving.
That help was a turning point, changing her career path. She pursued a Master of Science, Health Care and Policy from Brandiea University (United States).
“I realised that there must be so many other parents in my country, struggling to give their children a shot at a normal life.
“It is at this moment that I opened Tunaweza Children’s Home. The centre is co-founded with her friend, Shilla Sabune; who is a legal health professional.
The centre helps children who have different health complications.
It is registered with the Allied Health Professionals Council.
The centre offers modernised special needs treatment and care. Some of the parents pay for the services, while 40% of them do not.
Kakonge says the centre also takes care of some of the parents who cannot afford to pay for treatment.
Their costs are met by donors and well-wishers.
Kakonge says the centre’s objective is to ensure that all parents — including those that do not pay, get high-quality and affordable special needs education.
The number of children at the centre, located in Kiwatule, a Kampala suburb, has grown from one child to an average of 40.
The centre was started in April 2012. Unlike some of the special needs schools, the children must be coming from their home daily.
“We train the parents and caregivers on how to take care of these children when they go back home, in the evening. We do not believe in keeping the children from their parents in boarding sections,” she explains.
Julius Oyeyo, the head of therapy at the Children’s home, says: “In some instances, some parents need help much more than their children. Some of them come when they are traumatised and need to be helped.”
However, Kakonge says; “There is a stigma with which much of the community responds to children with disabilities and special needs.
“The ignorance of theseconditions, too, leave parents in a state of confusion. Most of them are unable to cope with the management of the children.”
The centre offers multidisciplinary therapies, paediatric care and alternative education. It also works with qualified therapists and teachers from a range of disciplines with different but complementary skills, knowledge and experience.
Kakonge explains: “These work together to deliver healthcare and education aimed at providing the best possible outcome for the physical and psychosocial needs of the child and their caregivers.”
It also works as a hub for student training. It receives 16 trainee students every year from Mbarara University of Science and Technology, Makerere and Kyambogo universities.
Kakonge says the centre also has a standing partnership with the Northeastern and Boston universities which send graduate students and their professors to support the development of the capacity for the centre. Kakonge says the two universities were instrumental in the establishment of the centre.
Early Detection
Kakonge says most parents fail to detect the need for their children to get special needs education and treatment, something she says is unfortunate.
She says early diagnosis and access to health care for children with disabilities are paramount in the correction and management of disability. However, this is a challenge to most parents for children with disabilities.
“Our findings show that most parents identify these issues at a school-going age of between four and six years. In many cases, she says some children are only noticed to have learning inabilities at ages seven to nine years.
This late discovery affects their normal learning process since they were not detected early enough.
Kakonge is also concerned that people who have a child with a disability take them to health care for proper diagnosis (assessment); but a limited number of them are later taken for rehabilitation.
Deeper Reality
Statistics from the education ministry show that out of 1,370,583 students enrolled in a secondary school in Uganda, 8,945 students (0.6%) have special learning needs.
Visually impaired students comprise the largest share of these students, followed by those with physical disabilities.
Pupils with autism and multiple handicaps were fewer among enrolled students.
There is no data available on students with disabilities enrolled in universities and other tertiary institutions.
There is an urgent need for such data to ensure equitable access to tertiary education.
The 2018 education ministry reports show that some 9,597 pupils enrolled in pre-primary schools (1.6%) have impairments. The majority were children with ‘mental impairment’ (28%) followed by ‘hearing impairments (25%), ‘visual impairment’ (22%), ‘physical impairment’ (16%), ‘autism’ (5%) and ‘multiple handicaps-deaf and blind’ (4%).
There are 172,864 children with special needs in primary schools, which is 2% of total primary level enrolment and 9% of the overall children with special needs.
Regarding the category of impairment, hearing (27.2%), mental (22.7%), visual (25.8%) and physical impairments (17.9%) constitute the percentages. More than half (52.6%) of the pupils with disabilities, are males. Challenges But, with all the effort invested in the centre, it still has a scarcity of well-trained specialists, therapists and counsellors.
This condition is a hindrance to the attainment of optimal performance of early childhood intervention programmes.
Kakonge says currently, the centre has 17 staff with different expertise, but the number is still low.
She also notes that there is still a poor attitude and response of the central government in prioritising the needs of these children.
The absence of relevant statistical data to inform our initiatives and interventions, has not made the journey any better.
Kakonge adds: “At the heart of the above challenges is the scarcity of financial resources as it requires quite a bit of money to maintain quality therapy.”
She hopes that there will be more support accorded to the centre through well-wishers.
About The Centre
Tunaweza Children’s Home was established as an early childhood intervention programme providing therapy, education and psychosocial support to children with disabilities and special needs and their families.
Since its inception, Tunaweza Children’s Home has worked with more than 1,500 children through assessments, therapy, and education programmes.
The key outcomes over the past years have highlighted the importance of early detection/ identification and early intervention, consistency in accessing treatment and learning programmes.
Also, the need to educate families, communities and the nation about children with disabilities and special needs has been realised.
These needs that constitute disability can be visible or invisible; temporary or long term; static, episodic, or degenerating; painful or inconsequential.
Parent’s View
Doreen Muliira, a parent at the centre, says her child is autistic.
“When I went to the centre, I was really helped. The centre has helped me train my child. This has greatly helped me to train my child to become independent and useful to himself.”
She adds: “My son is now eight years old. I brought him to the centre five years ago. He could not dress himself up and would reject everything handed over to him.
“He would feel disturbed and his reactions were violent. But they took us through therapy and it has greatly helped him. I thank God for Tunaweza and the healing power.”
Muliira adds: “He is now fine. He joined the mainstream and can easily do home chores.
“He can add, sing and do so many things on his own. Even his teachers are mesmerised by his improvement. We are proud of this centre.”
“My child could not speak or even hear. He can now hear very well and do his chores. He is not speaking so well, but can express himself,” she adds.
“We did not know about autism and people keep telling you silly things like it is a curse or witchcraft. This is not true, and we know all this because of Tunaweza.”
