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Hey Melissa,

Thank you for the questions!

1) The Autism Movement has been growing in Uganda and we are fortunate to have new services (specifically schools) popping up each term. We have already established relationships with schools to ensure we will be able to refer parents to a school with the capacity to enroll that child. We are going to roll out the solution slowly at first to test this flow from screening through to enrollment. We are focusing in Entebbe for the pilot because there we have established partnerships or our own programs for parents support groups, schools, social workers and therapy centers ready for the influx that will result from screenings. From there we will expand to Kampala, then Jinja, then Kisoro and the north. We were part of two major mapping exercises that mapped services for those with disabilities by area and disability and we use this in our expansion plan.

Service costs range. Special needs schools managed by the government (one in every district) are typically 50,000 Ugandan shilling ($14) per term for day scholars. Schools with the highest quality education and specifically focused on Autism are much more expensive at from 600,000 Ugandan shilling to 900,000 for day scholars. This difference is due to the required student teacher ratio. At government schools it can be 20, 30, even 50 to 1 teacher but at these specialized schools it is kept at 4 students to 1 teacher. This is going to change very soon though as we are about to have an Inclusive Education Policy, which we believe will create more quality education options.

Therapy also varies significantly based on the type of therapy. Occupational therapy can range from 30,000 up and typically involves some counseling. Speech and language is very expensive as there are few providers. Fortunately we are working with a program in Entebbe that offers free therapy through the government.

With all that said we agree with your model, that parents are a critical opportunity for intervention. I'd love to talk more about your program because I think this screening could flow into your solution so well.

I want to take this chance to thank you for the question. It shows that you have a strong understanding of the ethical implications of a screening. I have been working in Uganda for four years and have intentionally not pursued increasing diagnosis until now because there were almost no Autism specific services four years ago. Now there is enough of a movement in country, with active parents, that we believe we have the support systems necessary. In addition, our mobile web solution helps parents begin at-home intervention immediately.

2) Another great question and concern of ours. This idea came from an ethnographic study we conducted in the different regions of Uganda to understand the cultural views towards Autism. We followed this with a small research program in April 2016 to understand the implications of the medical label "Autism." We have no experience that indicates a parent reacts poorly to the medical diagnosis. In fact all of our data and desk research indicates perceptions and attitudes become more positive with the medical label.

As an example, our user story video is based on stories from real mothers. Mama A. (withholding name for privacy) openly admits that she thought her child was cursed and that she sought traditional healing methods that were increasingly inhumane and ineffective. When she finally went to a doctor and received diagnosis she cried tears of joy because now there was hope again. From almost every mother there were similar stories. They were all disheartened that there was no medication to "cure" but overall much more positive with new hope. This is an obvious contrast to many other places in this world where diagnosis of Autism has a negative connotation.

With all that said, we have advisors and a team with significant sensitization experience. We understand that we have to been realistic in setting expectations. We have a good sense of when the initial positive attitude following diagnosis will dwindle and how to appropriately intervene to support parents. Plus we have a strong group of parent advocates to assist in the support process by sharing their stories and experiences.

Love this concept as persons who are deaf, even if they sign, remain unable to communicate in developing countries. This is especially critical in emergency situations. I will am curious how the translation will work. Will it be word for word or would it separate sentences and translate a full sentence at a time? I know sentence structure in sign language can be vastly different than in written or verbal language. I am minimally conversational in sign language and with friends who are deaf often try to write back and forth. However, the way a sentence would be signed is so different we often run into misunderstandings.


embracekulture commented on Reaching Out - A Community Outreach Program

Do you have any children with Autism in your program? Can you provide any behavior interventions? The feedback we received from parents sparked an interesting idea a parent intervention program (used in India with Autism). I'd love to get your thoughts on the idea. We can shift that conversation to email but I think there is some interesting alignment with your program.