Ministry of Social Affairs Quick Responses to a Family with Severe Disabilities in Kupang
Writer :
Humas Balai Naibonat Kupang
Translator :
Karlina Irsalyana
KUPANG
(21 May 2021) - The Ministry of
Social Affairs through the "Naibonat" Center in Kupang responded to
the conditions of three orphans with severe disabilities in Lefuleo Village,
West Kupang District, Kupang Regency, NTT.
Poor family with 4 siblings. Both of parents
have died. The mother died in 2014 and the father died in 2019. The first child
is a 24-year-old girl named Martha and the second child to four boys, namely
Darius (22 years), Eston (15 years), and Kian (11 years). The four boys have
severe disabilities. Only Martha is not disabled.
The conditions for the three children were
almost the same. They could not stand, had difficulty moving their legs, but
could speak. Darius is in a more severe condition because his legs and hands
cannot move. The body condition of the three children looks thin.
They have a disability since the age of
approximately 7 years. The symptoms are almost the same, namely when walking
often falls and gradually cannot stand. In the end, all the legs could not be
moved and they could only sit down. Increasingly, the three of them also had
difficulty moving their hands. Darius is unable to move his feet and hands.
Eston can still move his fingers slowly and Kian can still move his hands
slowly.
These three children with disabilities depend
on their older sister. Whatever the activities of the child must be assisted by
their sister. Darius must be fed with every meal. Eston can slowly eat by
moving his fingers, but it is necessary to help to raise his hands. Kian can
still eat by himself.
When going to sleep, they must be helped to
lie down. Her older sister had to take a bath to the toilet. So far, they have
never had their health checked, because they have no money and do not have a
BPJS.
Her older sister's condition also looks thin.
She had to take care of her three paralyzed siblings as well as to meet their
basic needs. She took the initiative to sell or open a small shop at her house
because it was impossible to work outside the village.
For a shop business, she
borrowed capital from the cooperative. Until now, she still has a debt of Rp.
2,3 million in 11 installments. Regarding the condition of poverty, this family
received PKH assistance on behalf of her late father. So far, PKH assistance is
still being received.
The Head of the
"Naibonat" Center in Kupang, Supriyono said that regarding the
reports that came in and the condition of the family, the Naibonat Children's
Center responded to the case by providing Social Rehabilitation Assistance
(ATENSI) services, namely conducting an initial assessment of the condition of
children with disabilities and consulting with the assessment team from the "Prof.
Dr. Soeharso" Center in Surakarta
by sending videos and photos of children. The three children were diagnosed
with Duschene Muscular Dystrophy (DMD), which is a genetic disease that causes
weakness in the voluntary muscles.
"Naibonat" Center
is also working with the West Kupang Community Health Center to check children
at a regional hospital. They were hospitalized for 3 days. The results of the
hospital doctors' examinations also stated that they showed symptoms of a
genetic disease.
To meet the cost
of care, the Naibonat Center and the Social Worker Service Unit (Sakti Peksos) assist
the family to make a Certificate of Disability (SKTM) and negotiate with the
hospital for the cost of treatment at the regional hospital. The Regional
Hospital agreed to waive inpatient fees.
"Naibonat" Center
and Sakti Peksos also coordinate with the Kupang District Health Office so that
these families get BPJS whose dues are borne by the government. During this
time, the BPJS is still in process.
"Naibonat" Center
then provides Social Rehabilitation Assistance (ATENSI) services in the form of
meeting basic needs including staple foods and additional nutrition (rice,
instant noodles, cooking oil, eggs, milk).
In the long term, the
Center will support older sisters so that they can better care for their
younger siblings by strengthening nurturing, family support, and economic
empowerment. The Center collaborates with several parties to assist and
increase business capital. In this collaboration, the fund collected Rp. 4.5
million. These funds will be used for debt repayments and increase business
capital at the shop.
The Center also coordinates
with other Centers to provide tools that are suitable for their conditions.