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Early Identification of Intellectual Disabilities

Special Hope Network aims to identify children, from birth to 5 years, to better serve them with earlier and higher quality care in Zambia.

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What problem does your idea solve?

Currently our Community Care Centers serve children from birth to 15 years of age, with most children entering the program between 3-5 years old. Per WHO statistics for Zambia, four out of five children with intellectual disability die before five years old. The earlier we begin equipping parents with the skills to care for their children, the greater the opportunity to affect change in lives. Similarly, by training parents from an earlier age, children's growth and development can be maximized.

Explain your idea

Zambia has a very effective under 5 vaccination and well child program through the local clinics. We would like to leverage the success of that program to identify disabilities during regular clinic visits in Lusaka. We have known for awhile that we need to begin to serve children younger than we are currently identifying them. We hope that by identifying children earlier will allow us to create more effective at risk programs.

Who benefits?

Children who have intellectual disabilities will be the primary beneficiaries. Through early identification, these children will live longer, grow and build their capacity. Concurrently, the families of these children will benefit from the knowledge of how to care for their child, the support network of other families with similar stories, and a stronger relationship with their child. Finally, the clinic workers will benefit from a deeper understanding of possible risk factors for disability.

How is your idea unique?

Special Hope Network is the only organization in Zambia that works solely with children under 15 who have intellectual disabilities. By using a parent-training model to elicit growth across all developmental areas, we empower families to invest in their child's progress. We also provide medicine and nutritional supplements not otherwise affordable to our families. Our goal is to equip parents with the skills to teach their children, and do so in the community in which they live, therefore, changing Zambian society's perception of children with intellectual disabilities. Currently in Zambia, early childhood programs for typically-developing children do exist, but there are few programs for young children with intellectual disabilities. Of these existing programs, many begin at age seven or focus solely on physical disabilities. By targeting children under five and addressing the cognitive component, we fill a specific niche and are regularly used by other organizations as a resource.

Tell us more about you

Special Hope Network is a non-profit, established in the USA for service in Southern African countries. We have 3 US staff, and 27 Zambian staff. We are based in the capital city of Zambia, Lusaka, and currently have three Centers, teaching and serving 175 students and their families weekly. We train other organizations how to teach children with ID. Our executive staff will be devoting time to this idea. That includes the CCC Managers, who will work closely with the local clinics.

What are some of your unanswered questions about the idea?

How will we interest clinical officers that currently have little to no desire to serve children with intellectual disabilities? How will we encourage continuity of care when clinical officers and nurses are moved from local clinics? How will we get clinics to embrace an idea that takes them a bit more time when they have long lines and a never-ending amount of need?

Where will your idea be implemented?

  • Zambia

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

  • Research & Early Testing: I am exploring my idea, gathering the inspiration and information I need to test it.

How has your idea changed based on feedback?

We interviewed 72 mother's in our Community Care Centers, where we work with children with intellectual disabilities from birth to age 15, and found that while 92% first suspected that their child had a disability by age 1, only 24% received a referral to a doctor. After obtaining feedback from the mothers, we found that they cannot go to the hospital to see a doctor without a referral or they will have to pay as a private client, which they are unable to afford. The local compound clinics must provide a referral to a doctor and the general hospital. Therefore our ideas of focusing on the clinics is all the more significant since they are the gatekeepers in Zambia's healthcare system, through whom we must work to improve early identification of children with disabilities.

Who will implement this idea?

Our president will be working on this idea at the concept level, due to the necessity of creating collaborations between various government ministries and clinics. And our Vice-President and her assistant will be working on this at the programmatic level. They are all permanently located in Lusaka, Zambia where we will be implementing the program. We further will have four staff persons for each Community Care Center in each compound.

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?

The core feature of Special Hope Network is that we love what we do, caring for children with intellectual disabilities is not merely a mission it's our passion. That keeps us continually focused not on programs but the end users. It also keeps us willing to try new ideas and constantly iterate. These are the foundations on which our organization is built. We believe that ideas can come from anyone. Our Executive Committee work together to test and prototype new concepts or answers to problems. Depending on the nature and extent of the new idea, we then meet with our board of directors to gain buy-in and strategic assessment. We have an excellent Board, they are constantly encouraging focus and program development for the families we serve.

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

Children with intellectual disabilities are often over looked even in the disability community, which tend to focus primarily on physical disabilities. Therefore there are not many models that have been tried and proven which traditional funders are inclined to support. Amplify's encouragement of innovation would allow us to create new and untried solutions.

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?

At the individual level our end-users face the daily challenge of lack of adequate information, insight, and support to give them direction and hope for their children. At the systems-level, the biggest challenge is the pervasive cultural stigma against children and families with disabilities. It is due to this that many hide their children away and become so isolated.

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?

In five years we aim to have every compound clinic utilizing early intervention assessments as part of the under five health vaccination and well child health program. How do we scale up our Community Care Centers and create the partnerships needed to respond to this impact.

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

  • Less than 6 months

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

  • Between 20-50 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 $100,000 and $500,000 USD

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

www.specialhopenetwork.org

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Holly and Team - Congratulations again! Check out this blog post highlighting the winners of this Challenge: https://challenges.openideo.com/blog/disability-and-inclusion-challenge-winning-ideas-announced

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Hi Holly and Team,

We’re excited to share with you feedback and questions from the Amplify team and an external set of experts. We encourage you to think about this feedback as you continue to improve and refine your idea. You are welcome to respond in the comments section and/or to incorporate feedback into the text of your idea. Your idea and all associated comments will all be reviewed during the final review process.

-This idea is exciting because it aims to link in with the vaccination programme already being provided in clinics, so will benefit from the success these are already have in reaching parents and children.
-The idea is new in the sense that it is targeted at children with a type of disability that is neglected, in many contexts not just in Lusaka / Zambia.
-This is definitely an idea that considers users needs. Children benefit from being identified and parents from being trained on how they can better understand and support their child.
-This idea is bold, well considered and very sensible. It focuses on a key target audience, founded by statistics from the WHO. What excites me is its use of existing facilities, staff and programmes as a foundation from which the identification of children can be done.
-With the right support, including from the Ministry of Health, this idea could be sustainable and successfully rolled out to community clinics across Lusaka and the rest of the country.
-How do you plan to identify children with intellectual disabilities in a time efficient way in the clinics?
-How have you considered the needs of the parents, families, communities, and health center staff?
-How will you persuade professionals in clinics to work with you?
-What advocacy / engagement work is being done at a policy and public service level to maximise the chances of clinicians being enabled to embrace this approach?
-How are the outcomes and impacts going to be measured?
-Do you have plans to work with the Ministry of Health to implement these procedures into standardised clinic check ups for new babies? (Could the Ministry of Health enforcing these procedures help answer some of your unanswered questions? e.g. showing the ministry the importance of continuity of care resulting in possibly less movement of clinical staff? - this is certainly a prominent problem I have seen across Zambia however.)

In case you missed it, check out this Storytelling Toolkit for inspiration for crafting strong and compelling stories: http://ideo.to/DXld5g Storytelling is an incredibly useful tool to articulate an idea and make it come to life for those reading it. Don’t forget - June 4 at 11:59PM PST is your last day to make changes to your idea on the OpenIDEO platform.

Have questions? Email us at amplify@ideo.org

Looking forward to reading more!

Photo of Holly
Team

Utilizing developmental checklists created by Catholic Relief Services for Kenya, Malawi, and Zambia.

We are serving the parents by not only providing answers to their concerns for their children by also a context in which to address them at our Community Care Centers. When families are provided a direction of care they feel less shame and loss of stigma, which begins to transform culture.

We will work with health care workers with a standardized assessment for varied disabilities.

In December, 2015, the government published its "National Policy on Disability", in which they specifically state that they need to "develop and promote programs that prevent and reduce incidences of disability."

We will be able to measure impact by seeing how many children are referred by clinics to Special Hope Network's centers.

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Hey Holly, Excellent idea. Do you have a formal diagnosis process/criteria? Is it recognized by the Ministry of Health? Would be very interested to learn more about how diagnosis is done in Zambia and share experiences from Uganda.

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Hello,
We will be utilizing developmental checklists created by Catholic Relief Services, SCORE ECD, and the Conrad N. Hilton Foundation for Kenya, Malawi, and Zambia. "Early Childhood Development: Serving with Love"

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So glad and proud to be a part of this wonderful organization!

Photo of Holly
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Thank you Laura!

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I agree this is a much needed intervention. Addressing the children's developmental problems at an early age and addressing the needs of the parents is essential, cost effective and effective.

Photo of Holly
Team

Thank you Libby for your comment and encouragement. We are looking forward to moving the idea forward.

Photo of Kasonde
Team

This is a great idea! There is very little being done for children with disabilities in Zambia and this intervention would expand the already amazing work that Special Hope is doing!

Photo of Elizabeth Giles
Team

This is great! Thanks for sending it to me, so glad to read about your idea. Fingers crossed!