Participants at a national disability summit in Namugongo called for reliable supplies of essential medicines, specialised healthcare, assistive devices and accessible public facilities to improve their independence and quality of life.
Young people with disabilities have urged the government to improve access to specialised healthcare, ensure reliable supplies of essential medicines and enforce accessibility standards in public facilities, saying gaps in service delivery continue to expose them to avoidable hardship.
The concerns emerged at the National Youth Disability Summit organised by the Spina Bifida and Hydrocephalus Association Uganda (SHAU) at Namugongo-Kyoto, where participants shared experiences of discrimination, high treatment costs and barriers to accessing public services.
The five-day summit, which concluded on Friday, October 23, brought together young people with different disabilities to discuss challenges affecting their lives and develop recommendations for government.
Joan Apio, a tailor and epilepsy advocate, said inconsistent supplies of anti-seizure medicines in government hospitals force some patients to buy drugs from private pharmacies, placing treatment beyond the reach of people with limited incomes.
She said people with epilepsy need regular medication to manage seizures, but interruptions in treatment can worsen their difficulties, particularly when they also face poverty and social exclusion.
“Sometimes they are there, sometimes they are not there. When they are not there, you will be required to go and buy,” Apio said.
She called for consistent supplies of epilepsy medicines in public health facilities and wider access to electroencephalogram (EEG) machines, which record electrical activity in the brain and can help clinicians assess seizures.
Apio said that despite coming from an area served by a regional referral hospital, she had previously been advised to seek the service at Mulago National Referral Hospital, a journey and expense that some patients may struggle to manage.
She also called for subsidised CT scans, noting that people experiencing seizures can sustain head injuries but may be unable to afford the examinations needed to assess them.
For young people with spina bifida and hydrocephalus, challenges include access to specialised medical monitoring and essential assistive supplies.
Winfred Nabikoolo, the summit chairperson and a project officer at SHAU, said some health workers lacked adequate knowledge of different disabilities, leading to misunderstandings and, in some cases, inappropriate treatment.
She cited instances in which young people with short stature were asked to return to hospital with caregivers despite being adults capable of seeking medical attention independently.
Nabikoolo called for regular refresher training for health workers to improve their understanding of disability-related needs and their ability to communicate respectfully and effectively with patients.
She also urged hospitals to improve access to sign language interpretation for deaf patients and ensure that people with spina bifida receive appropriate monitoring of their bladder and kidney health.
She said government planning and budgeting should account for the differing needs of disability groups, including access to essential supplies and assistive devices.
People with spina bifida may require catheters and enema bags, while people with albinism need sunscreen to protect their skin from harmful ultraviolet radiation, she said.
Although Nabikoolo acknowledged government support, including the distribution of wheelchairs to different regions, she said more effort was needed to ensure that essential items reach the people who need them.
Accessibility in public buildings and accommodation facilities was another concern raised by George Wakooli, a young person living with spina bifida and hydrocephalus.
Wakooli said some venues lack ramps and other facilities that would allow wheelchair users to access conference halls, washrooms and sleeping areas independently.
He urged government agencies to involve people with disabilities when designing and implementing programmes, saying policies and commitments have limited impact when they are not translated into practical improvements.
“Some things just end on paper but without implementation,” he said.
Dr Joab Twebaze, who has short stature, called for more support to combat stigma and improve access to education and livelihood opportunities.
He said misconceptions about the abilities of people with short stature can lead to discrimination and denial of opportunities. Some young people also drop out of school because their families doubt their ability to live independently, he added.
Twebaze called for more research into breathing difficulties experienced by some people with short stature, saying participants had reported losing colleagues without understanding the underlying causes.
He also urged government to invest in skills development and economic empowerment to help people with disabilities establish sustainable livelihoods and reduce dependence on others.
Nabikoolo said the summit brought together different disability groups to strengthen collective advocacy and present shared concerns to government ministries responsible for health, education and gender.
She said the recommendations should inform practical interventions that address the specific needs of different disability groups and improve access to essential services.