He has one of those personalities that you can’t forget. His nickname “Pastor” came from his love of standing up surrounded by a crowd of his peers preaching from the Bible. Captain America or Iron Man might even at times make an appearance on the Sea of Galilee. Nine-year-old Jason, brings a continual joy and laughter to those who know him. Although Jason’s joy is palpable, the road in his short life has had its share of challenges. Born to a mother with schizophrenia, Jason suffered from fetal alcohol syndrome, causing behavioral and learning disabilities. Because of the family’s lack of resources, and poor services for adults with mental health issues, he was placed in an orphanage.
Families with children that have disabilities like Jason’s, face many challenges, especially in developing countries where children are too often placed in institutions. Poverty plays a significant role in separating families. Many don’t have the resources to care for a child with special needs, and finding access to quality health care is next to impossible. Another problem families face is stigma.
Emily Worrall, co-founder of Ekisa, an organization in Uganda working with children with disabilities and their families said, “We have seen women and children loose their husbands and fathers because they believe they could not produce a child with special needs. We have seen instances where her parents and siblings essentially shun a mother because they believe her child is a curse. It is overwhelming to think of all the work that needs to be done to sensitize people to disability, and we are so thankful we are not alone in this battle.”
According to UNICEF, 5-10% of children in Africa live with a disability, an astounding statistic in light of many of the difficulties families face. There are some, however, like Emily and her colleagues at Ekisa that are making a difference in communities and helping to reunite families.
Jason is one of their success stories. Social workers worked tirelessly to help to rehabilitate Jason’s mother who had two other children. They gave her support and resources to help her care for her children, but when it was apparent that she wasn’t able to care for them they found an aunt who was willing and able. That is where Jason is now with his Aunt Loy and siblings. Like in any family, there are still challenges, but Jason is benefiting from those who believed he could thrive better in a family of his own rather than spending more years in an institution.
Supporting communities and keeping families together is what Ekisa is working to do. They have a residential facility to care for children, community programs, and social workers that are dedicated and persistent in finding families for each child. Emily said, “Several of our Community Care Outreach Ugandan families have come to our gates desperate, not knowing where to turn for help. Some were willing to place their child in our residential care if we had not offered community support services. We do our best to empower and educate these families so they may provide the best care for their child.”
Ekisa currently supports over 50 families with a growing wait list averaging 25 families at a time. They are also working to find adoptive parents for some of the children in their care. “Reuniting children with their families is our desire, and we give families tools and opportunities in order to care for their children again. For our children who have been abandoned without any trace of extended family, we try and find Ugandan families to adopt. We have had three domestic adoptions so far,” Emily said.
Ekisa is also looking to the future. In 2015, they are planning to add a respite care program, which will give parents a much-needed break from caring for their children with special needs. An organization based in the United States, called 99 Balloons, is partnering with Ekisa to develop this program. 99 Balloons was created to support families with children that have disabilities by helping to provide community and support through their monthly “rEcess” or respite program. rEcess is an opportunity for children with special needs to receive one-on-one attention from trained local volunteers through a variety of activities while giving their parents a night off.
Providing essentials like food, shelter, and medical care makes a difference in a child’s life. Addressing the dilemma of orphans, especially those with special needs, at the family and community level gets to the root of the problem of why there are orphans in the first place and begins to make lasting overall change in societies.
Organizations like Ekisa and 99 Balloons are looking at the family and community as a whole, and ways to support them and keep them together. Jason and his siblings, under the care of their Aunt Loy, are examples of how real persistence and intentional planning brought one family back together.