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“I am very motivated to get involved”

In the interview, Juliana Auma talks about her plans as Child-Help country representative and the greatest challenges for children with spina bifida and / or hydrocephalus in Kenya.

Since August 2021 Juliana Auma has been working as the Country Representative Kenya for Child-Help. Her way to us was also a very personal one: Her daughter was born with spina bifida and also developed a hydrocephalus. Instead of giving up after the diagnosis and passively hoping for help, Juliana Auma founded the parent group SHAK (Spina Bifida and Hydrocephalus Association of Kenya) in 2002, which is now active in 16 regions of Kenya and has developed into a national organization for people with disabilities. This was also possible thanks to the financial support from Child-Help International.

Contact with Child-Help came through the International Federation for Spina Bifida and Hydrocephalus (IF), for which Juliana Auma has been volunteering since 2002. In 2014 she founded the first Child-Help-financed House of Hope in Africa in Kijabe, 45 kilometres north of the Kenyan capital Nairobi.

In the interview, Juliana Auma talks about her plans as Child-Help country representative and the greatest challenges for children with spina bifida and / or hydrocephalus in Kenya.

What does working for Child-Help mean to you personally?
The subject of spina bifida and hydrocephalus is very important to me because it affects my daughter herself. Therefore, I am highly motivated to get involved in the interests of those affected – especially because of my perspective as a mother.
I am proud that I am allowed to represent an international organization like Child-Help as the country representative in Kenya. This is also a great success for me professionally.

Which will be your main plans for the near future concerning your position as the Country Manager Kenya of Child-Help?
I want to review the SHIP Program (Spina bifida & Hydrocephalus Interdisciplinary Programm) to involve different partners and stakeholders. Currently the SHIP Program is understood by our stakeholders as a booklet used during outreach clinics. Whereas the SHIP Program involves different disciplines that are key in improving the quality of life of persons with spina bifida and/or hydrocephalus (SBH). The SHIP Program will then reach out to families that have not been reached especially those from the northern and western regions of Kenya.
From my point of view it is very important to decentralize access to the most needed services (medical supplies, training in continence management) for families of persons with SBH. This will be done by strengthening the existing structures e.g. the strength in the SHAK Kenya network of parent and youth groups, the Bethany Kids outreach sites and the rehabilitation centres across the regions among others.
Over the years, families have to wait until the next outreach visit just to get one catheter, by strengthening what is currently happening we shall be able to ensure that our families have access to services closer to them and provided in their local language.


How should the cooperation with the official authorities look like in this context?

We must lobby the key government ministries as the Ministry of Health for policy review of the National Health Insurance Fund (NHIF) on the deliverables for persons with SBH after remitting the monthly premiums for this national health insurance cover.
The Ministry of Education should work on an access to inclusive education and inclusivity for children and persons with SBH across Kenya.
It would be helpful, if the Ministry of Labor and Social Protection provided the essential services needed by persons with SBH – for example access to important medical supplies such as oxybutynin (a drug that relaxes the bladder during catheterization) which is not readily available in Kenya.

Where do you see big challenges?
Our big challenges include resources which are so limited.
In the future we have to try harder reaching out to families who come from areas that are placed far apart geographically.
Last but not least: Finding the goodwill of Kenyans and that of the political class.

If you had a wish: What would you like to change first in Kenya to improve the situation of children with spina bifida and/or hydrocephalus?
Start a livelihoods program targeting sustaining families of children with SBH. Once families have a source of income their living standards will improve and have access to the most important services hence restoring the dignity of life of persons with SBH across Kenya.
I would positively use various social media tools to document issues going on around the lives of persons with SBH across Kenya and use this platform for fundraising.

Thank you for the interview!