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Citizen Posts
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By BUATRE George
KAMPALA — The Spina Bifida and Hydrocephalus Association Uganda (SHAU) has intensified its campaign to improve rehabilitation, healthcare access, and advocacy for persons living with disabilities after adopting a series of strategic resolutions during its Annual General Meeting (AGM) held on Saturday in Kampala.
The meeting, hosted at Jevine Hotel, brought together delegates, disability rights advocates, caregivers, and development partners to review the organization’s performance, elect new leaders, and outline priorities for 2026.
The AGM highlighted SHAU’s growing national footprint in disability inclusion, rehabilitation, and advocacy, with the organization reporting major gains in continence care, education support, and health interventions for children living with spina bifida and hydrocephalus. Delegates also called for increased government funding, stronger district health systems, and improved data collection to support disability programming across Uganda.
During the meeting, members approved previous AGM minutes, adopted the chairperson’s, treasury, and management reports, and reviewed amendments to the organization’s constitution aimed at aligning it with emerging national priorities and governance standards.
The assembly also conducted by-elections to fill vacant leadership positions.
Spina bifida is a congenital condition in which the spinal column fails to develop properly, leaving parts of the spinal cord exposed, while hydrocephalus is caused by excessive accumulation of fluid within the brain cavities, resulting in increased pressure on the brain.
Health experts recommend adequate intake of folic acid before and during pregnancy as one of the key preventive measures against spina bifida. Treatment and rehabilitation services for both conditions are currently offered at specialized health facilities, including Mulago National Referral Hospital, CURE Children’s Hospital of Uganda, and Mbarara Regional Referral Hospital.
Speaking at the AGM, Ruth Nalugya, the Executive Director of SHAU, underscored the importance of accountability, transparency, and grassroots mobilization within disability structures. She urged delegates to strengthen community-based networks to enable families and affected persons to benefit from empowerment opportunities and rehabilitation programmes.
“We need organized structures from the grassroots to national level so that persons living with disabilities can easily access services, information, and support,” Nalugya said.
The organisation also distributed life-skills training toolkits and a Vacuum-Assisted Closure (VAC) machine, a specialised medical device used in advanced wound management and healing.
Meanwhile, Angella K. Nabwowe, Executive Director of the Uganda Parliamentary Forum for People With Disabilities (UPFPWDs), commended SHAU for advancing the rights and welfare of persons with disabilities across the country.
Nabwowe emphasized the importance of accurate disability data in influencing national planning and budget allocations.
“When engaging the Ministry of Finance, they require accurate figures regarding persons with disabilities. Reliable data is essential because government planning and resource allocation depend on evidence,” she said.
She further called for intensified awareness campaigns targeting communities, policymakers, and newly elected legislators to reduce stigma and discrimination against persons living with spina bifida and hydrocephalus.
Nabwowe encouraged parents and communities to embrace affected children and utilise parliamentary advocacy platforms whenever support is needed. During the elections, Nakanyiga Catherine was elected Vice Chairperson of the SHAU Board, replacing the late Katandi Steven. Abonyo Ann was also elected Chairperson of the National Youth Advisory Committee.
According to the annual report presented by Lilian Akello Brenda, SHAU implemented several major programmes during the year, including the Collective Action for Disability Rights initiative supported by the Atlas Alliance. The organisation also rolled out the Continence and Skin Care Scale-Up Project in the Lango sub-region with support from Christian Blind Mission (CBM).
Other interventions included the Hope and Healing Project implemented in partnership with CoRSU Rehabilitation Hospital and the House of Hope Kampala initiative, which provides accommodation, psychosocial support, clinical care, and rehabilitation coordination for children and caregivers.
SHAU additionally coordinated the Clean Intermittent Catheterization (CIC) protocol alongside Katalemwa Cheshire Home and Neuro Kids, with support from Child Help International through the MRC/UVRI and LSHTM Uganda Research Unit.
The report indicated that 76.5 percent of youth trained in continence and skincare management registered improvement in self-management skills, while urinary tract infections and skin complications reduced by 64.7 percent among beneficiaries.
At least 46 children reportedly benefited from surgeries, therapy, and assistive devices, while participating school-going children registered 95 percent school attendance and improved academic performance.
The organisation also reported that 59 members were trained under a consortium advocacy model rolled out across 135 districts, while 40 health facilities were assessed and eight equipped with inclusive medical equipment. In the research programme, 21 participants were enrolled into the CIC protocol study, resulting in the publication of two research papers.
Under the House of Hope initiative, 398 children, youth, and caregivers received accommodation and support services, including 209 first-time beneficiaries. Additionally, 142 individuals received continence and skincare training, while 250 beneficiaries accessed continence management supplies.
The report further showed that 118 families were linked to multidisciplinary rehabilitation services, while 243 families benefited from follow-up support interventions. SHAU said all participants involved in the programmes reported improved wellbeing, independence, and social inclusion.
At policy level, the organisation cited progress in integrating disability inclusion into national health and education strategies, alongside the establishment of the Buganda Disability Coordination Committee.
Looking ahead, SHAU identified expansion of the CIC protocol, strengthening district healthcare systems, scaling up House of Hope services, mobilisation of sustainable funding, and training of frontline health workers in inclusive care as key priorities for 2026.
The organisation also pledged to intensify advocacy for increased government financing towards rehabilitation and disability inclusion programmes nationwide.
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