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 http://specialchildrenuganda.org/uganda-and-disability/)
. 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.
