Thursday, 11 April 2019

Being disabled in Uganda

This blog article is about Simon.

Disability is defined as permanent and substantial functional limitation of daily life   activities   caused   by   physical,   mental   or   sensory   impairment   and environmental barriers resulting  in  limited  participations (Special Children Uganda . According to UNICEF 13% of the Ugandan child population is living with disability which means approximately 2.5 million children (2014).  

Simon is a little boy living in Kikooba village. Her mother is a member of the ladies group we are working with and also a stable attendant of my adult English courses. One day she approached me after class and invited me to meet his son. The family is living in a small house and owe a small garden where they grow their beans and cassava. The house is little and modest but kept tidy.

The mother introduced me to Simon. He was lying in her hands. This little boy cannot walk, cannot sit, cannot hold the neck, cannot use the hands, cannot eat solid food and not able to communicate. Simon is 3 years old. The mother told me she brought Simon to the local hospital where the doctors were not able to set up a diagnosis and advised to visit a better facility in Kampala. All she asked from me is a baby carriage in order to take Simon with her when she leaves the home. When he was a baby it was not a problem to tie him on the back but as he became heavier it is not possible anymore.
As a development worker we always focus on sustainable solutions. Baby carriage is a help but not solving deeper problems. Simon do not have any kind of health care service related to his condition and a family do not receive governmental grant. I started to look around…how could we find a long term solution for the core problems?  In Uganda special health centres are established in order to support people living with disabilities. These facilities are able to make assessments and set up a care program based on the needs of the child. However these facilities are only available in bigger cities and these expenses are not covered by any governmental support. The social net in Uganda is in a very early stage. In Kikooba village people do not benefit from pension, family allowance, unemployment benefits, health care or disability grant. The family of Simon is struggling even to cover the price of the bus ticket to go to Kampala. 

After contacting several Organisations dealing with child support we found only one who visited the family and provided cash to purchase the bus tickets. At the healthcare facility  first time in Simon’s life he was checked by a specialist doctor and a therapist gave instructions to the mother how to do exercises and how to feed the little boy. They also prescribed medicine and special equipment for him. We were able to buy medication for one month. What will happen after one month is still not clear. We are trying hard to find a donor or an organization which could support the family.
Simon’s case is not unique. In the village many children are suffering from disability without any support or treatment. Women give birth at home not in hospitals and the families are lack of funds for basic vaccination. Malnutrition and poor hygiene conditions also sharpen the conditions.
The government tries to help these families by establishing a special grant program. Disabled people or their parents can form a support group which must be registered at the local council. The government releases a certain amount every three months for the municipalities. Then the designated officials choose two groups to be supported and provides them approximately UGX 2-3 million (EUR 500-750). They also provide guidance about the use of these funds. They encourage the group to purchase animals and seed together and try to have investments in a hope that the extra income will help in a long term. Permanent individual support for disabled people does not exist. The idea of group support is not bad…however it can be questioned how the “lucky” groups are selected. It can happen that a registered group is waiting for years without benefiting from the grant. In Kikooba the families already decided to register their group and try to get the support.

MONDO is involved by supporting people living with disability in Uganda and Kenya. In Uganda we are working with a women’s group engaged in tailoring activities in Kampala and a group in Gulu too. In Kenya MONDO is supporting a school for children with special needs. By the help of MONDO’s efforts these people have the chance to earn a living and be more independent.  These initiations are giving amazing opportunities however this is just the tip of the iceberg.