SHAU Elects New BoD, Highlights Progress and Challenges, Calls for Gov’t Support For SBH

By Kabuye Ronald

The Spina Bifida and Hydrocephalus Association of Uganda (SHAU) held its Board of Directors elections on Saturday, September 27, ushering in new leadership and celebrating key milestones achieved over the past years.

Akello Lilian Brenda was elected as the new Chairperson, taking over the reins from outgoing Chairperson Phoebe Mutonyi, who served for five years. Katand Steven was elected Vice Chairperson, while Kyazike Prossy assumed the role of Secretary, and Kamukama John as Treasurer. The technical team includes: Michael Nkugwa, Solomon Bagaza and Ochomo Charles.

Other elected board members include Kawuma Benjamin, Mbaire Edida, Kigozi John, and Nahabwe Maureen. Alupo Ruth was elected as Chairperson of the General Meeting, with Edonga Patrick as her Vice.

SHAU is a national organization committed to empowering individuals with Spina Bifida and Hydrocephalus (SBH) to lead independent, productive lives through advocacy, education, and access to healthcare and support services.

In her farewell remarks, Phoebe Mutonyi reflected on the strides made during her tenure.

“When I took office, we didn’t have a physical office, a secretariat, or even guiding policies. Today, I leave behind an organized institution with a fully functional office, operational grants, and established governance structures. I step down with clean hands,” said Mutonyi.

She urged the incoming board to build on the foundation laid by focusing on expanding partnerships, increasing visibility, and creating greater impact in the lives of people living with SBH.

However, she also highlighted persistent challenges. “Access to services remains a huge barrier, especially in education and healthcare. Children in wheelchairs often can’t access classrooms due to lack of ramps. Hospitals rarely consider disability inclusion in their service delivery. The stigma around SBH is still high, and men’s involvement in advocacy remains minimal,” she noted.

Mutonyi also criticized the government’s inadequate support. “Government doesn’t provide catheters and ostomy supplies needed by our children. These essentials should be part of the national drug list and distributed free of charge through public health facilities. Currently, even major hospitals like Mulago lack them, leading to increased infections and costs for families.”

In her acceptance speech, Akello Lilian Brenda thanked SHAU members for their confidence in her leadership.

“I may be new in this specific role, but I bring with me experience from leading other organizations. As the saying goes, the old broom knows the corners, but the new one sweeps cleaner. I intend to work hand-in-hand with the outgoing board to ensure we both know the corners and sweep best,” Akello said.

She pledged inclusive leadership, continuity, and capacity-building to improve the lives of those living with Spina Bifida and Hydrocephalus.

According to the SHAU 2024 Management Report, the organization made significant strides in advancing its mission. The Programs Department comprising three staff and four volunteers successfully implemented activities in health and rehabilitation, inclusive education, human rights advocacy, and institutional development in Gulu, Mbale, Mbarara, and Kampala, while engaging stakeholders nationwide.

Key Highlights:

• Inclusive Education: Through the Obuntu Bulamu Peer-to-Peer Support model, SHAU worked with the Ministry of Education and local education offices to promote inclusion. School management plans were revised, teachers trained, and inclusion teams established.
• TOFI Project: 330 out-of-school children with disabilities (160 girls, 170 boys) were enrolled into formal education. Assistive devices, inclusive learning materials, and classroom modifications were provided.
• Teacher Training: 102 teachers (53 women, 49 men) were assessed for inclusive practices. 57 received further training in sign language, inclusive lesson planning, and curriculum development.
• School Accessibility: Eight schools had their infrastructure modified to accommodate learners with disabilities, including installation of ramps and guide rails.

• SHAU contributed to the National Guidelines on Disability and Child Protection and participated in the development of the National Health and Rehabilitation Strategy through the Ministry of Health.
• The organization also played a key role in developing the National Blueprint for the care of persons with disabilities.

Health and Rehabilitation:

• SHAU supported 200 individuals (103 males, 97 females) to access medical and rehabilitation services through public-private partnerships.
• 91 healthcare workers (71 women, 20 men) were trained in disability-inclusive care, including continence management and rehabilitation.
• 65 youth with SBH (31 men, 34 women) underwent life skills training covering community-based rehabilitation, self-care, and continence management.

A Youth Independence Week evaluation workshop showed positive outcomes, including increased self-catheterization, reduced infections, and greater independence.

Despite the achievements, SHAU faced challenges including budget cuts and understaffing, which affected implementation speed but not overall program success. The organization plans to address this through increased fundraising, proposal writing, and strengthening of strategic partnerships.

SHAU’s Monitoring and Evaluation department continues to emphasize transparency, accountability, and data-driven decision-making to strengthen program sustainability.

About SHAU
The Spina Bifida and Hydrocephalus Association of Uganda (SHAU) is a national organization working to improve the quality of life for people living with Spina Bifida and Hydrocephalus through advocacy, education, rehabilitation, and community empowerment.