The parents of the ACD opened a new school for children with disabilities in Entebbe, Uganda!
The school provides an education for 40 children who have multiple disabilities. Heaven's family supports a Physical Therapist who works with the children 5 days per week. They also purchased some adaptive equipment for the school. A speech and language therapist comes 2 times per week thanks to Heaven's Family. Pauline Greenlick and Lou Piccard are advising the school administrators and oversaw the placement of a Peace Corp volunteer to assist with managing the program in 2016.
Carlow University students held a bike ride to raise funds for hiring a special education teacher in 2017. She began working there in February 2017.
Vocational Training Center
We are working with Bright Kids Children's Home and the ACD to develop a plan to build a vocational training and business center designed to prepare students for the technological demands of college, careers or home-based businesses. Please contact us if you are interested in supporting this new project that is sure to develop self-sustaining skills and financial independence for mothers and their children.
During our visit in the summer of 2016, we spent a few days at the Noah's Ark School for children with disabilities. Several of the mothers of the ACD work at the school and provide educational experiences for their children and the children of other mothers who are working. A student studying Occupational Therapy volunteered at the school for one week collaborating with the Physical Therapist and Speech and Language Therapist. Through special efforts of a Carlow Honors student who raised awareness and money, we were able to purchase adaptive feeding equipment to increase the level of independence of the students there. Beth Sinteff also provided two communication books for use with the non-verbal children. These were welcome additions at Noah's Ark!
We believe that children with disabilities have much to offer their families and society by contributing positively to their communities. As educators, we know that many academic skills can and should be taught through functional, hands -on learning opportunities. Therefore, we constructed raised garden beds at the Noah's Ark School and at the Entebbe Welfare School for children with disabilities so that all children can have access to and learn effective gardening methods. We gave the schools the gardening curriculum developed at Carlow University that teaches academics through gardening and provide professional development to the teachers on using the curriculum.
Sean Kelly and the staff at St. Angeles College in Sligo, Ireland, raised enough funds to purchase 7 sewing machines to help some mothers establish home based businesses. Together with the school where children can be cared for during the day, moms are now able to earn a living to support their children. Challenges certainly persist in these schools and for these parents but we're pleased with some of the improvements that we see especially at Noah's Ark. Trained teachers are key so VCAYA will be hosting another 27 mile bike ride to fund a special education teacher. MORE BIKE RIDE INFO.
Our meeting with parents of the ACD focused on assessment of communication needs and training on strategies to promote communication for children presenting speech and language delays.
Small, home-based businesses of the parents in the ACD have developed since the February meeting with Heaven's Family. Many beautiful necklaces, purses, and baskets were collected and transported to Pittsburgh and Lynchburg for sale. Plans are in place to create a method of shipment of these items to the United States to support the mothers of children with disabilities and their families.
Heaven's Family conducted training for the ACD in September 2015 and February 2016 to further develop their business knowledge and to complete the requirements for receiving loans to build their businesses. The mothers would benefit from having a sewing machine to increase the speed of their production. We are working with volunteers now to raise funds to purchase one in the summer 2017.
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Improving the lives of vulnerable children
During our return visit in December 2014, we met with the leadership of the ACD and worked with them to develop a strategic plan. Among other goals for building the organization and developing methods for advocacy, the plan includes a focus on helping mothers of disabled children to start home-based businesses to support their families.
Leaders within Heaven’s Family- a Christian based organization, are collaborating with VCAYA and faculty in Carlow University’s Business School to provide expert assistance in developing business plans and offering micro-financing loans to start home-based businesses. These projects began in 2015 and are building on the foundation laid by Cynthia Nicola, faculty in Carlow’s business school. Nicola engaged her undergraduate business students in working with one of the members of the ACD, Susan Geteni in developing a business creating handmade items from Uganda. In addition to creating a business plan, students created a web site for Susan and raised startup funds for materials.
The meeting was extremely emotional. One brave women explained how difficult her life was - how isolated she felt – how she couldn’t work because of the burden of caring for a disabled child. Other parents echoed the struggles faced by parents.
One by one parents began to share their feelings of despair, hopelessness and sometimes desire that their children would be taken away from them. These moments were the most difficult.
By the end of the meeting over 100 people were in attendance and we had a better idea about possible opportunities for the group.
Assistance for mothers to establish home-based businesses seems to be a viable solution and will be the focus for VCAYA in 2015.
Many parents traveled for hours to attend, some having to hold their disabled child on the back of Boda Bodas, (small motorcycles designed to accommodate multiple riders). They continued to arrive throughout the morning. Some children were high functioning and these children were invited to go to the ARTS DAY festivities while parents attended the meeting. As parents continued to fill the room, staff at Banana Village began to bring additional chairs for the parents who continued to arrive. Clearly the need for information on their children’s condition and for opportunities for parents to connect with one another is greatly desired.
Understanding parent's needs...
In the summer of 2014, a meeting of the ACD was scheduled for the same day as the planned ARTS DAY events at Bright Kids Orphanage. The ARTS DAY was designed as an ‘inclusive event’ where children with disabilities participate alongside their typically developing peers; bringing many children out of the shadows and into their community to engage in a fun day filled with engaging activities. In addition, distribution of free inoculations provided by donations from Canada and the United States and administered by four visiting volunteer physicians at the Bright Kids Health Clinic was organized by Lou Piccard, Director of the Ford Institute at the University of Pittsburgh and his wife, Pauline Greenlick, adjunct professor at Carlow and treasurer for Bright Kids USA. This coordination allowed many children with disabilities to have access to the first health care ever provided in their lives.
Children with disabilities are often referred to as ‘Hidden Children’ given the cultural belief that mothers who give birth to a disabled child are cursed. According to one community organizer, “They hope that God will take this burden away”. Consequently, access to health care and medicines prolong an existence which is deemed a burden.
The stigma associated with not only being disabled but giving birth to a child with a disability serves to ostracize both the child and the mother from society; confining them in their home to care for the child and hide themselves. Uganda reports a 16% disability rate and given the negative stigma associated with disability, the rate is likely much higher.
In January 2014 a ‘clinic’ was held in which about 10 families attended to learn more about their child’s disability and to seek advice on educational planning. During this session parents found comfort interacting with one another and formed an advocacy group, ‘Advocates for Children with Disabilities’ (ACD). The group selected a President, Vice President and Secretary, articulated the purpose of the organization, and planned to meet regularly with each other and find other parents in the region who might benefit from joining the organization. A Carlow University graduate, Kristen Ritchy, designed the logo for the newly formed parent support group.
In Ugandan society, mothers who give birth to a child with a disability are thought to be ‘cursed’. Consequently they are usually abandoned by their husbands. Their children are hidden and do not attend school. When our team returned 6 months later, the group had swelled to over 75 members.
VCAYA sponsors the organization’s website and provides training to parents. Efforts are underway to promote small business development for mothers who must care for their disabled children in the home.