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ekulture - Mobile solution for parents to screen, diagnose, and provide intervention for children with Autism in Uganda

Due to lack of diagnosis and awareness, Autism is often labeled "cursed" or "possessed." We can change that using simple mobile phones.

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What problem does your idea solve?

In Uganda the severe lack of awareness and diagnosis of Autism has forced parents to rely on deep-seated cultural beliefs that label the condition as “cursed” or “demon possessed.” Instead of seeking medical intervention, parents subject their child to the inhuman practices of witchdoctors. We can change this. Using simple mobile phones parents could screen their child, track milestone, receive support and access online trainings, thereby increasing early diagnosis, intervention and acceptance

Explain your idea

Rose has a three year old son, Enock, who acts differently than her other children. He rocks and flaps his hands. She is too afraid to ask her friends or family. While in a taxi she sees a sign that says many children have disabilities and parents may be unaware. She thinks of Enock. Step 1: Rose sends SMS "screen" to the short code on the ad. In return she receives 23 “yes” or “no” questions via SMS. This tested questionnaire was developed based on key indicators of certain disabilities. Rose’s responses are collected and analyzed real time. Step 2a: If Rose’s answers do not indicate a disability she will be encouraged to continue to track her child's development. Rose will receive periodic text messages of developmental milestones, at the appropriate milestone ages (e.g. 3 months, 6 months, etc.). If her child misses any milestones she will be alerted, as will a medical profession who can follow-up for diagnosis. Step 2b: If her answers indicate Autism, Rose will receive a notification and a follow-up phone call for diagnosis. She will also receive a link to the ekulture solution, a mobile web platform designed for low-bandwidth, low-end phone distribution. The ekulture solution provides trainings for at-home interventions, emotional support and advocacy. The ekulture solution was piloted in 2016 to 200 community members, resulting in an increase in knowledge (pre vs. post test) and significant change in attitudes and perception

Who benefits?

WHO estimates there are 117,340 children with Autism in Uganda alone, yet only 6,909 children in primary schools are diagnosed with Autism (2007, DFID). This indicates a severe under-diagnosis and exclusion. Focusing on teachers or children in school ignores the larger issue. We instead focus on parents, the key beneficiaries, who lack access to diagnosis, information and trainings. We look to involve parents in every step of the development of our solution from content to design.

How is your idea unique?

1) We address the negative stigma by addressing the key issue of lack of awareness. Current interventions focus on in-school children or diagnosed children. Our solution focuses on the much larger issue of lack of diagnosis and access to information. 2) Mobile phones have never been used as a tool for diagnosis or tracking development. To date successful interventions have relied on training of “informal” diagnosticians, typically local leaders. A critical error is parents do not recognize Autism as a disability and hide the child. Building on concepts of successful m-health intervention for pregnancy tracking, our solution enables parents to track the development of their child to identify a medical condition before a children receives the negative label or is hidden. Diagnosticians then follow-up on identified children instead of searching for them, significantly increasing reach and reducing cost. 3) The ekulture solution empowers parents to train themselves in their own homes

Tell us more about you

We have put together a strong, dedicated working group of experts and users (see “Tell us more about you”). Antonnate, who has a daughter with Autism, is our newest addition. We interviewed her and her feedback was invaluable. We knew we needed a mother on the team and she was eager to join. All are in Uganda. Voices of Africa, a partner in Kenya is helping redesign user interface with the mobile web platform. International advisors include Nilofer Naqvi, PhD and Judith Grether, Phd

What are some of your unanswered questions about the idea?

Both the questionnaire and ekulture solution have been piloted individually, though not as a singular solution, with statistically significant results. Our unanswered questions focus on our ability to scale. They include: 1) How to market the solution/increase user base We need to determine channels to market to parents. Our initial thoughts are public transportation signage, existing parent networks, healthcare networks, local leaders, and celebrity endorsement (embraceAbility). 2) How to manage sustainability as we scale To achieve scale we need to manage cost (charge-back SMS and toll-free number) and personnel providing the follow up call. We are exploring solutions such as ad and referral revenue and Parent-intervention

Where will your idea be implemented?

  • Uganda

Experience in Implementation Country(ies)

  • Yes, for more than one year.

Expertise in Sector

  • I've worked in a sector related to my idea for more than a year.

Organizational Status

  • We are a registered non-profit, charity, NGO, or community-based organization.

Idea Maturity

  • Prototyping: I have done some small tests with prospective users to continue developing my idea.

How has your idea changed based on feedback?

Mama Maria seemed like our perfect user. Without awareness she delayed in diagnosis of her son. After she could only afford a few therapy sessions, tried to replicate at home and wants to learn more. But Mama Maria can't speak or read english, unexpected as she lives in affluent Entebbe. We are changing our MVP and pilot to be in two languages, English and Luganda. We can then reach the majority of Entebbe mothers and test the implication of languages, income, education and urban/rural. As we scale we will use a pre-recorded messages and toll-free lines for illiterate parents to screen children. Mama Jennifer told us how Mama Jamira had encouraged her when her child was first diagnosed. The role of other mothers in the initial sensitization phase is clearly critical. After diagnosis parents will be referred to a parent support group both local and virtual. As we scale, we'll explore parent-interventionist programs to empower mothers to drive follow-up and intervention post-diagnsis

Who will implement this idea?

We have put together a strong and dedicated working group of experts and users (see “Tell us more about you”). Antonnate, who has a daughter with Autism, is our newest addition. We interviewed her and her feedback was invaluable. We knew we needed a mother on the team and she was eager to join. All are in Uganda. Voices of Africa, a partner in Kenya is helping redesign of the interface with the mobile web platform. International advisors include Nilofer Naqvi, PhD and Judith Grether, Ph

Using a human-centered design approach, you may uncover insights that lead to small or foundational changes to your organization’s existing strategy or processes in order to unlock the potential of your idea. How would your organization go about making such changes?

embraceKulture develops programs using an iteration loop, 1. Gather feedback 2.Brainstorm 3.Research 4.Develop with a working group 5.Test. These steps are repeated as the size of the testing groups increase. Throughout the process we directly request for criticism/challenges This program will undergo a series of “escalating studies” (similar to sprints), which are a combination of product / feature launches and follow-on user studies. Because many of the learnings will involve content adaptations and changes, the platform is built with an easily accessible administrative content management backend. This allows non-developers to iterate on content and delivery, while keeping a fluid product roadmap as we learn.

What is it that most attracted you to Amplify instead of a more traditional funding model?

We chose to participate in this challenge because Amplify provides: - Opportunity for collaboration with a pool of innovators focused in one issue area, thereby enabling creation of a holistic system - Alignment on our anthropological approach (listen first, people first) - Access to tools to develop real skills we are actively using to improve our product/service offerings - Ability to iterate, pivot and adapt as we learn - Advice from mentors/coaches to help us move from pilot to scale

What challenges do your end-users face? (1) What is the biggest challenge that your end-users face on a day-to-day, individual level? (2) What is the biggest systems-level challenge that affects your end-users?

There are several profiles of parents (income, education, and urban/rural) making it difficult to generalize, but some common themes/issues emerged including: -Financial – paying for the daily needs of their family and increased needs of CwD -Unemployment – unable to hold a job because of the care needs of their CwD -Cultural stigma – outcast for having a CwD -Single parent – mothers are commonly blamed and abandoned for having a CwD -Family stability The biggest systems challenge is lack of awareness and diagnosis. Families all reported delaying diagnosis due to lack of physical manifestation creating reliance on cultural stigma and local healers, causing lack of statistics and overall resulting in a severe lack of services and feeling of exclusion for families.

Tell us about your vision for this project: (1) share one sentence about the impact you would like to see from this project in five years and (2) what is the biggest question you need to answer to get there?

By 2022 we aim for 1 million screenings, driven by collaboration with Ministry of Health, 100,000 children diagnosed, 65,000 users on the training/information platform throughout East Africa, and mounting evidence of decrease in abusive traditional practices due to diagnosis. Question:Given that progress for children can be considered “slow” how do we maintain momentum of parent networks to keep parents engaged after their the initial sensitization phase leading to a long-term sustainable model

How long have you and your colleagues been working on this idea together?

  • Between 6 months and 1 year

How many of your team’s paid, full-time staff are currently based in the location where the beneficiaries of your proposed idea live?

  • Under 5 paid, full-time staff

Is your organization registered in the country you intend to implement your idea in?

  • We are registered in all countries where we plan to implement.

My organization's operational budget for 2016 was:

  • Between $50,000 and $100,000 USD

If your team/idea/organization has a website, please share the URL below.

www.embracekulture.org www.ekulture.org

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Photo of Melissa
Team

Great idea, EmbraceKulture! Thank you for your important work. Two questions that comes to mind based upon some of our previous work A Global Voice for Autism: Integrative Autism Cooperatives for Conflict-Affected Communities are:

1) After "screening," then what? You mention that a user may eventually be able to enroll her child in a school. I am curious to know what other resources exist for a child with autism in Uganda. How does this vary depending on the location where the family is located? What are the costs of these services? If they have a cost, is it something that families are willing to pay (how do you transform the families from perceiving the child as cursed to seeing the child's education as a worthwhile investment?)

2) Are there ever situations in which a positive screening could be harmful to a family (ie. overwhelming and hopeless because it confirms that there is a disability that the family "cure") or when the family suddenly sees there are services but cannot access them/can only get limited support through the online trainings?

If so, how can these things be mitigated?

Wonderful idea and I hope we can follow through on our conversation very soon.

Photo of embracekulture
Team

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.

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