Mr. Ali Jookhun
Message from the Chairperson of the African Down Syndrome Network
THEME: “IMPROVING OUR SUPPORT SYSTEMS”
“As the Chairperson of the African Down Syndrome Network (ADSN) and Founder Member of DSA-MAURITIUS, I am privileged to address you on this significant occasion of World Down Syndrome Day 2025. This year’s theme, Improving Our Support Systems, invites us to reflect on the essential frameworks required to ensure that persons with Down syndrome, not only as children but throughout their entire lives, receive the support they need to thrive.
1. Support Systems for Families from Birth to Adulthood
The journey of raising a person with Down syndrome begins at birth, but it does not end there. Families need comprehensive support from the moment of diagnosis and throughout their child’s life. The initial stage, where parents are first introduced to the condition, requires accurate information, emotional support, and resources to help them navigate early interventions. But as children grow, the challenges evolve. Effective support systems must adapt to the changing needs of persons with Down syndrome, guiding them from early childhood through adolescence and into adulthood. Families must be empowered with the tools and networks that allow them to provide their loved ones with opportunities to lead fulfilling and independent lives.
2. Health Care Support Systems
Health care is a fundamental need for all persons, but it is particularly critical for those with Down syndrome, who may face a range of health challenges throughout their lives. Access to comprehensive, high-quality healthcare systems tailored to their specific needs is essential. This includes regular check-ups, early interventions, therapies, and ongoing care. However, in many parts of Africa, healthcare systems are underfunded and underdeveloped, and persons with disabilities are often marginalised. There is a pressing need to invest in healthcare infrastructure, particularly in rural areas, and to train medical professionals to better understand and address the unique needs of persons with Down syndrome. Quality healthcare should be accessible to all, regardless of location.
3. Basic Utilities and Access to Essential Needs
Every person, regardless of their ability, deserves access to basic utilities that support their health and well-being. For persons with Down syndrome, this includes access to clean water, nutritious food, and proper sanitation. These essential needs are often overlooked, particularly in rural and underdeveloped regions. Inadequate nutrition and lack of hygiene facilities can exacerbate health issues for persons with Down syndrome, making it even more important to ensure that these fundamental services are universally available. Whether in urban centers or remote villages, every person with Down syndrome should have access to clean water, food, and sanitation to support their health and development.
4. Education Support Systems
Education is the cornerstone of personal development and empowerment, but it must be accessible and adaptable to the needs of all persons. For persons with Down syndrome, the traditional “one size fits all” educational approach is insufficient. Instead, education systems must be flexible and inclusive, offering specialised teaching methods, curricula, and environments that cater to the unique learning needs of persons with Down syndrome. From early childhood education to higher education, persons with Down syndrome should be provided with the necessary resources and accommodations to succeed academically. Moreover, lifelong learning opportunities should be available to help persons develop skills that promote independence and participation in society.
5. Training and Employment Support Systems
As persons with Down syndrome transition into adulthood, the focus must shift to providing meaningful training and employment opportunities. Despite advancements in disability rights and inclusion, many persons with Down syndrome still face barriers to gaining meaningful employment. To address this, inclusive training programs must be developed that equip persons with Down syndrome with the skills and knowledge they need to succeed in the workforce. Furthermore, employers must be encouraged to create inclusive workplace environments, offering job opportunities and accommodations that ensure all persons, regardless of disability, can participate in and contribute to the workforce.
6. Social Aid and Financial Support Systems
Social aid and financial support programmes are essential in helping families and persons with Down syndrome manage the additional challenges they face. However, these programmes are often limited or inadequately resourced in many African countries. Governments and organisations must develop comprehensive, accessible, and sustainable social support systems that include financial assistance, healthcare subsidies, and other essential services. These support systems should be designed to alleviate the financial burden on families, providing them with the necessary resources to care for their loved ones with Down syndrome.
7. Urban and Rural Realities
One of the most significant challenges faced by persons with Down syndrome in Africa is the disparity between urban and rural areas in terms of access to services and opportunities. While urban centres may offer better healthcare, education, and employment options, rural areas often suffer from a lack of resources and awareness. This gap must be bridged to ensure that persons with Down syndrome, whether they live in cities or rural villages, have equal access to the support systems they need to thrive. Targeted interventions are needed to improve infrastructure and services in rural areas and to raise awareness about Down syndrome, ensuring that persons in both urban and rural settings can fully participate in society.
Conclusion
As we reflect on the theme of World Down Syndrome Day 2025, it is clear that improving support systems is a crucial step towards empowering persons with Down syndrome. This journey requires a holistic approach that spans healthcare, education, employment, social services, and basic utilities. However, the need for these support systems is particularly pressing in Africa, where many persons with Down syndrome continue to face significant barriers due to under-resourced healthcare systems, inadequate educational opportunities, and limited employment options.
As chairperson of the African Down Syndrome Network, I urge governments, non-governmental organisations, and communities across Africa to prioritise the development of robust support systems for persons with Down syndrome. Whether in urban centres or rural villages, no person with Down syndrome should be left behind. We must work together to ensure that every person has access to the services, resources, and opportunities they need to lead fulfilling, independent lives.
Only through collective effort and commitment can we create a truly inclusive society, where persons with Down syndrome are not just included but are celebrated for their unique contributions. Let us take this opportunity to reaffirm our commitment to improving the lives of persons with Down syndrome, ensuring that they have the support they deserve to live with dignity, independence, and opportunity.”
Ali Jookhun OSK
Chairperson, African Down Syndrome Network
