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Intervention Training for Parents and Mobile School Program for Children with Neurodevelopmental Disorders (NDD)

CNDI would provide intervention training for parents and develop mobile educational services for children with Neurodevelopmental Disorders

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What problem does your idea solve?

Many children with neurodevelopmental disorders (NDD) in sub-Saharan Africa do not have access to any form of education as a result of late diagnosis and stigma. Our follow-up project (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850395/) involves early screening and provision of interventions that include medical and educational services to children with NDD as reflected in the enclosed preliminary report. We hope to set up mobile school program to meet the objective of educational services.

Explain your idea

Many children with neurodevelopmental disorders (NDD) ranging from autism spectrum disorder, Downs Syndrome to cerebral palsy lack exposure to educational services in Nigeria and other sub-Saharan African countries, either because the parents do not enroll them in normal mainstream schools because of stigma/discrimination or the few enrolled in normal mainstream schools are rejected by the schools' authority because they could not cope in normal classroom settings. Inability to cope in normal classroom settings may be due to inattention and hyperactivity arising from behavioral problems associated with NDD. Many of these children need special education services and one-on-one approach with the teachers, which are lacking in normal mainstream schools. The short and medium term approach is to establish and pilot mobile school program that would consist of teachers trained in special education and developmental psychologists that would visit these children with NDD at their homes with educational materials for about 3 times in a week, spending about 3 hours with each child during each visit. This would provide educational opportunity for these children who are not usually accommodated in mainstream schools. The long term and scale-up approach would be to promote and lobby for passage of educational bills and policies that would encourage establishment of special education facilities within normal mainstream schools to promote community inclusion.

Who benefits?

Children of preschool and school ages with NDD attending the Child and Adolescent Mental Health Center of Federal Neuropsychiatric Hospital, Yaba, Lagos, Nigeria would benefit from this idea. These children would enroll for the Mobile School Program at a special dedicated office at the Child and Adolescent Mental Health Clinic. Special Education Teachers that would be assigned to each child would pay the children visits at their homes for about 3 times in a week to provide teaching services.

How is your idea unique?

This idea is unique because there is no similar program ongoing in Nigeria to the best of our knowledge. We believe this program would eliminate the lack of exposure of children with NDD to formal education as it has been observed till date in this environment by: - Eliminating the lethargy of parents in enrolling their children with NDD in normal mainstream schools because of stigma/discrimination. - Providing alternative means of educational services to children with NDD rejected in normal mainstream schools because they are not able to cope in a typical classroom setting. Our follow-up program (http://www.grandchallenges.ca/grantee-star) had recorded success by encouraging more children with NDD to visit the Child and Adolescent Mental Health Center of Federal Neuropsychiatric Hospital, Lagos, Nigeria for medical services ranging from intervention for behavioral problems to physical therapy. Children with NDD visiting this clinic would be enrolled into the program.

Tell us more about you

Childhood Neuropsychiatric Disorders Initiatives (CNDI) is a Non-Profit Organization (http://www.cndinitiatives.org/) with Memberships including Professionals like Psychiatrists, Laboratory Scientists, Accountants, Lawyers, among others who are committed to the objective of the Organization of promoting the physical, social and mental well-being of Children and Adolescents in Nigeria and other parts of Africa. Our Organization had previously partnered with Open Ideo and Ideo.org.

What are some of your unanswered questions about the idea?

The Idea would need to engage the services of Special Education Teachers and Developmental Psychologists, who would need remunerations. Sustenance of this idea after initial pilot phase would need the parents of the children with NDD to subscribe and pay a little fee to keep the program running. The program may need to be subsidized for many poor parents to buy in. The long term aim of this project of promoting community inclusion, which consist of holding various stakeholders meetings and lobbying for educational bills and policies that would promote establishment of special education facilities within the normal mainstream schools would take some time to happen. The Mobile School Program would need to continue to fill this time gap.

Where will your idea be implemented?

  • Nigeria

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?

Most (85%) of the parents of children with neurodevelopmental disorders (NDD) engaged expressed the desire to have their children's medical treatments (Behavioral Modification, Medication Prescription/Follow-up and Physical Therapy) incorporated into Home Visits planned for Educational Services. This may require the clinicians to visit the parents and their children at their various homes, with attendant extra costs and time on the part of health team. Some of our Team Members have suggested the idea of training the parents to provide intervention services such as Behavioral Modifications and Physical Therapy at home to their children. Our Special Education Trained Teachers would do home visits, while we would encourage the parents to visit the Child and Adolescent Clinic with their children for purpose of comprehensive clinical evaluation requiring Medications Prescription and Follow-up. So, our idea now incorporates Intervention Training for Parents.

Who will implement this idea?

Our team at Childhood Neuropsychiatric Disorders Initiatives would implement this idea. We would need to hire 14 Special Education Teachers (12 on Full Time and 2 Experienced on Part Time basis). Three Specialist Clinicians (2 Child Psychiatrists and 1 Pediatrician) would be involved in this Project on Part Time basis. Clinician Trainees, making a total of 10 would be involved on Part Time basis. Two Developmental Psychologists, 6 Nurses and 2 Social Workers would be involved on Part Time basis.

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?

Big decisions in our Organization are typically made by the Executive Members in accordance with the Constitution of the Organization. Such decisions are often taken to the General Assembly for final ratification. So, both Executive Members and Ordinary Members of the Organization are often involved in buy-in of decisions at the Organization in accordance with the Constitution of the Organization. Some of our Organization's documents, including the Constitution are attached to clarify the response further (See attachments).

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

Amplify provides avenue for refinement of ideas. Amplify affords opportunity to keep an open mind, a mind set of anything is possible without being judgemental, encouraging and providing room for more experimentation and refinement, unlike the traditional funding model that may limit scope of thoughts and study design. Amplify also employ human centered design principle that incorporates the users, their needs and requirements at all stages of the idea design.

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?

The major day-to-day challenge to the end users (Parents) is both physical and financial burden of caring for their children with neurodevelopmental disorders (NDD), which could be highly overwhelming for the parents. Another source of burden to the parents is the perceived stigma in the society. The perceived stigma on the part of the parents limits the opportunity of the children to get early interventions, including medical and educational services. So, the biggest systems-level challenge that affects the end-users (children with neurodevelopmental disorders) is lack of access, oftentimes to both medical and educational interventions. The lack of access to educational intervention is largely a product of both stigma and inability of the children to fit into typical classroom settings.

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?

IMPACT - Our vision for this project in the next five years is for the prototype to spread widely across the country with more children benefiting. QUESTION - How do we get buy-in of Ministries of Health and Education at Policy and Governmental levels and implement the ultimate policy drive of incorporating Special Education Program into Normal Mainstream Schools, so that more children with neurodevelopmental disorders (NDD) can receive educational intervention in an inclusive environment?

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

  • Between 1 and 2 years

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:

  • Under $50,000 USD

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

Website - http://cndinitiatives.org/ Facebook Page - https://web.facebook.com/ChildhoodNeuropsychiatricDisordersInitiatives/?_rdc=1&_rdr
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Attachments (11)

ORGANIZATION POLICIES AND PROCEDURES MANUAL.pdf

Childhood Neuropsychiatric Disorders Initiatives (CNDI) Organization Policies and Procedures Manual

ORGANIZATIONAL CHART.pdf

Childhood Neuropsychiatric Disorders Initiatives (CNDI) Organizational Chart

Organization Constitution.pdf

Childhood Neuropsychiatric Disorders Initiatives (CNDI) Constitution

Training Curriculum for Neurodevelopmental Disorders.pdf

Training Curriculum for Neurodevelopmental Disorders (NDD)

Plos Medicine Article.pdf

Improving Treatment of Children with Autism Spectrum Disorder in Low- and Middle-Income Countries: The Role of Non-specialist Care Providers

HLRS_Article.pdf

Public health and research funding for childhood neurodevelopmental disorders in Sub-Saharan Africa: a time to balance priorities

Global Mental Health_ Autism.pdf

Pattern of impairments and late diagnosis of autism spectrum disorder among a sub-Saharan African clinical population of children in Nigeria

BBF.pdf

Agreement between clinicians' and care givers' assessment of intelligence in Nigerian children with intellectual disability: 'ratio IQ' as a viable option in the absence of standardized 'deviance IQ' tests in sub-Saharan Africa

Prob and Pro pdf.pdf

Problem and pro-social behavior among Nigerian children with intellectual disability: the implication for developing policy for school based mental health programs

SAJP 295-1480-1-PB.pdf

Excess of non-verbal cases of autism spectrum disorders presenting to orthodox clinical practice in Africa – a trend possibly resulting from late diagnosis and intervention

srep25175-1.pdf

Neurodevelopmental delay among children under the age of three years at immunization clinics in Lagos State, Nigeria - Preliminary report.

28 comments

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Spam
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Team

Hi Muideen 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.

General feedback from experts:
• One expert shared, “This program already exists and seems to have solid outcomes it seems like this is an expansion plan, I wonder how it could be used to educate those in schools that discriminate against educating these children to become more inclusive?”
• Another expert shared, “The approach presented is unique in that it seeks to provide educational services; typically this model is reserved for the delivery of health services. The idea is interesting and it certainly fills an unmet need in Lagos!”
• “Providing services to children early is a great idea the more the better!”

What experts shared for is this idea desirable, feasible and viable?
• Desirability: “The intended output (e.g. more children with NDD receiving some education) is desirable in a larger sense. Is this specific model what parents and children desire?”
• Feasibility: Seems feasible given traction to date. Questions that came up: How do you identify and train teaching professionals? Are other core care providers’ involved i.e. physical therapists, occupational therapists, speech therapists, behaviorists, etc.?
• Viability: Some questions that came up: “This is hard to assess not know what the program costs and if parents are able to contribute to this effort”

How does this idea consider user needs?
• “The users are served but my question remains, how were children and families involved in the design process? What do the children and families think about the delivery model?”
• “How do/will you train teachers to be knowledgeable about a broad range of disabilities? For example, children with cerebral palsy or muscular dystrophy often have typical intelligence and need very different strategies to address their motor limitations. Children with Autism need sensory modifications. How will teachers be trained for a broad range of students?”

Thanks for sharing the important work you are doing!

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!

Spam
Photo of Muideen Bakare
Team

We appreciate the Experts comments and various questions raised have been addressed in three parts as follows:
1. General feedback from experts:

• One expert shared, “This program already exists and seems to have solid outcomes it seems like this is an expansion plan, I wonder how it could be used to educate those in schools that discriminate against educating these children to become more inclusive?”

Response – This present idea is focused on execution of a new phase of a broader project, of which initial funding and funding duration could not cover. It is not necessarily like a scale-up or expansion plan. There would be stakeholders meetings along the line with ultimate objective of encouraging and promoting policy to incorporate special education program into normal mainstream schools. The opportunity of stakeholders meetings would be used to educate those in schools that discriminate against educating these children to become more inclusive.

• Another expert shared, “The approach presented is unique in that it seeks to provide educational services; typically this model is reserved for the delivery of health services. The idea is interesting and it certainly fills an unmet need in Lagos!”
• “Providing services to children early is a great idea the more the better!”

Response – We appreciate the above comments. Based on the feedback we got from group of mothers of children with neurodevelopmental disorders (NDD) we engaged, they expressed the opinion that they would want healthcare services to be included in the home visits planned for Educational Services. This would cause Clinicians and other team members to incur extra costs and time. Our team has resolved to organize “Intervention Training” for the parents, where the parents can be trained to provide some level of physical therapy procedures and behavioral modifications to their children at home. Behavioral modifications, such as rewarding of desired behavior among others could be carried out in various homes by the parents – this idea was also supported by the parents engaged during the feedback phase. Special Education Teachers would provide educational services through home visits as planned. Fortnightly, the Social Workers and Developmental Psychologists would provide home visits to the children and their parents. For clinical evaluation and follow-up that may require medication prescription, the parents would be encouraged to bring their children to the Child and Adolescent Clinic for follow-up evaluation.

Spam
Photo of Muideen Bakare
Team

2. What experts shared for is this idea desirable, feasible and viable?

• Desirability: “The intended output (e.g. more children with NDD receiving some education) is desirable in a larger sense. Is this specific model what parents and children desire?”

Response – Our feedback phase engagement has shown that the parents welcome the idea and are happy with it and express the desire to have some aspects of health checks included in the home visits planned for educational interventions.

• Feasibility: Seems feasible given traction to date. Questions that came up: How do you identify and train teaching professionals? Are other core care providers’ involved i.e. physical therapists, occupational therapists, speech therapists, behaviorists, etc.?

Response – Yes, other core care providers like physical therapists, occupational therapists, speech therapists, behaviorists are involved in these children follow-up plan. Our present idea has also been expanded to include training parents to provide some level of intervention services at home for their children with neurodevelopmental disorders (NDD). An advert would be placed to hire more Special Education Teachers for the purpose of this program. We have a training manual for neurodevelopmental disorders (which is included as part of the attachments to this idea). The training manual would be used to further train special education teachers about different types of neurodevelopmental disorders. Most special education teachers have background training curriculum that had exposed them to various issues of neurodevelopmental disorders (NDD) during their school training. However, they would be further trained with our training manual before joining our team for the project. Two experienced special education teachers are presently working on part time basis with our team on this project from inception.

• Viability: Some questions that came up: “This is hard to assess not know what the program costs and if parents are able to contribute to this effort”

Response – It is our belief that the parents would be willing to contribute fees to sustain this idea after the expiration of the Grant tenure based on improvement they would be able to see in their children, following every six months assessments by the Special Education Teachers. The parents would also be involved in rating improvement in their children that would be participating in the program. Satisfaction with the services being provided would also be assessed among the parents using Client Satisfaction Questionnaire (CSQ-8) - http://sno.mcmaster.ca/index.php?option=com_content&view=article&id=94:client-satisfaction-questionnaire-csq-8&catid=38:patient-satisfaction&Itemid=56

Spam
Photo of Muideen Bakare
Team

3. How does this idea consider user needs?
• “The users are served but my question remains, how were children and families involved in the design process? What do the children and families think about the delivery model?”

Response - Our feedback engagement has shown that the parents welcome the delivery model and are happy with it and express the desire to have some aspects of health checks included in the home visits planned for educational intervention services.

• “How do/will you train teachers to be knowledgeable about a broad range of disabilities? For example, children with cerebral palsy or muscular dystrophy often have typical intelligence and need very different strategies to address their motor limitations. Children with Autism need sensory modifications. How will teachers be trained for a broad range of students?”

Response – As mentioned earlier, most special education teachers have background training curriculum that had exposed them to various issues of neurodevelopmental disorders (NDD) during their school training. However, they would be further trained with our training manual (attached) before joining our team for the project. Two experienced special education teachers are presently working on part time basis with our team on this project from inception and are conversant with different cases of neurodevelopmental disorders (NDD) we see in the clinic on follow-up. In addition, Developmental Psychologists and Social Workers would pay fortnight home visits to the children and their parents.

We would be happy to receive further feedback and address further thoughts as the idea is being refined and improved. Thank you.

Spam
Photo of Sharmini Constantinescu
Team

Great idea. Maybe you could consider, coupling one of the visits with an overall general health checkup (including aspects such as posture, emotional wellbeing, etc.) as well. Good luck!

Spam
Photo of Muideen Bakare
Team

Thank you very much Sharmini for your comment. The suggestion you made is very possible. However, there is already ongoing healthcare interventions for these children with neurodevelopmental disorders (NDD) under the broader project we are carrying out titled, "Early Diagnosis and Interventions for Neurodevelopmental Disorders Among Children Under the age of Three" - http://www.mhinnovation.net/innovations/early-diagnosis-and-interventions-neurodevelopmental-disorders-among-children-under?mode=List

Spam
Photo of Muideen Bakare
Team

Just to mention that the quote by Helen Keller motivates us on this ongoing project - "

“All the world is full of suffering. It is also full of overcoming. When valued equally, included in their environments, allowed to cultivate strengths, and given the opportunity to overcome limitations, children with disabilities thrive — and so too do their families, communities, and countries.” – Helen Keller, American author
"

Spam
Photo of Anne-Laure Fayard
Team

Congratulations Muideen Bakare for having your idea selected for Feedback. Looking forward to seeing it evolve.

Spam
Photo of Muideen Bakare
Team

Thank you very much Anne-Laure Fayard.

Spam
Photo of Bettina Fliegel
Team

Muideen,
Hi. I wanted to share Allan Goldstein 's Idea on this challenge with you. Allan teaches a disability studies course at New York University. In this course people with disabilities team up with university students to create person-centered digital stories. The course and this collaborative effort positively impacts all involved. https://challenges.openideo.com/challenge/disability-inclusion/ideas/people-with-disabilities-team-up-with-university-students-to-create-person-centered-digital-stories

Are you aware of any disability studies programs in universities in your community in Nigeria?

Spam
Photo of Allan B Goldstein
Team

Hi Muideen, and thank you Bettina,
I'm happy to share thoughts with you at your convenience, Muideen.
Best,
allan

Spam
Photo of Muideen Bakare
Team

Hi Bettina,

Allan's idea sounds great. We only have Special Education Departments in our Universities. We do not have Disability Studies courses in our Universities in Nigeria.

Spam
Photo of Muideen Bakare
Team

Thanks Allan. Great idea you have got there. I would love to learn more.

Spam
Photo of Allan B Goldstein
Team

Here is a link to the post for the present challenge:
https://challenges.openideo.com/challenge/disability-inclusion/ideas/people-with-disabilities-team-up-with-university-students-to-create-person-centered-digital-stories
I'd like to share the teaching method globally. We have people with and without disabilities team up to create person-centered digital stories. During the semester, students write personal essays based on the themes introduced by essays and videos by and about PWDs. The students learn that all people are people first and the PWDs show that they have talents up to then unrealized. Everyone learns that we all want the same thing: work and love. Please write with any thoughts/ questions; thank you for your time, Muideen.

Spam
Photo of Bettina Fliegel
Team

Muideen - Check the comments on the post. There is much information there.

Spam
Photo of Muideen Bakare
Team

Thank you Allan for the explanation,

I will read through your ideas and the comments on it and get back.

Spam
Photo of Muideen Bakare
Team

Bettina - Thanks. I will

Spam
Photo of Anne-Laure Fayard
Team

Muideen Bakare Great idea. I love how your pilot aims to socialize kids in learning context / activities and hopefully it can also convince parents that their kids might be able to attend school. I can also see some connection with Allan Goldstein idea at the university level. Thanks Bettina Fliegel for making the connection. Muideen Bakare I'm wondering if you have considered as a second step to have the kids who go through your program join a normal program - even part-time. Thanks in advance for your feedback on Allan's idea and for considering who might be partners interested in implementing / piloting the methodology in Nigeria.

Spam
Photo of Muideen Bakare
Team

Thanks for your comments Anne. "I'm wondering if you have considered as a second step to have the kids who go through your program join a normal program - even part-time" - That may be possible if the associated behavioral problems in neurodevelopmental disorders, often resulting in inattention and hyperactivity are well controlled. Otherwise, a one-on-one approach with the teacher would be more beneficial for the child.

Spam
Photo of Anne-Laure Fayard
Team

Thanks Muideen for your response (sorry for being slow in responding). I guess I was trying to understand if integrating them at some point was an option. But I understand that there are limitations and constraints that might not be possible to overcome. Thanks!

Spam
Photo of Fiona
Team

This is a really interesting idea, and something we have also discussed but not in a place to start a project like this yet. I would love to hear how you get on with it. Best wishes

Spam
Photo of Muideen Bakare
Team

Thank you very much Fiona for your kind comment. You will surely be kept updated. Best.

Spam
Photo of embracekulture null
Team

Muideen, Please also see the idea by Reaching Out - A Community Outreach Program I think integrating these delivery models would be hugely effective.

Spam
Photo of Muideen Bakare
Team

Great idea embracekulture. The two ideas have some similarities. Thanks for being in touch.

Spam
Photo of Bettina Fliegel
Team

Hi Muideen. Nice to see you in this challenge!
What age range are you thinking about for this educational service?
Are you familiar with the Early Intervention Program in the US, where children age 0 - 3 years with developmental delay or disability receive in home services, PT, OT, and Speech Therapy etc., as needed? Maybe there is something to learn from this model?
https://www1.nyc.gov/site/doh/health/health-topics/early-intervention.page
http://www.parentcenterhub.org/repository/ei-overview/

How will families learn about this program? Have you been able to discuss the idea with special education teachers in your community?

How is your previous project progressing?
https://challenges.openideo.com/challenge/zero-to-five/funded/incorporating-depression-and-developmental-screenings-into-the-national-program-on-immunization-npi-in-nigeria

Good luck developing this new project!

Spam
Photo of Muideen Bakare
Team

Hello Bettina,

Nice seeing you again and thank you for your comments. Our screening program was done among children under the age of three (3) years, presently being followed up. However, our public enlightenment through print media and radio during the screening period has encouraged many parents having children with neurodevelopmental disorders above the age of 3 years to be bringing their children to our Child and Adolescent Mental Health Unit. So, the family would learn about this program through the Child and Adolescent Mental Health Services Unit and probably radio program. We are already working with Special Education Teachers as part of the team for the children we are following up presently.

I will look through that program in New York (https://www1.nyc.gov/site/doh/health/health-topics/early-intervention.page). Definitely, there should be something for us to learn from the program.

The other project is going on fine. We are trying to put together final report at this stage and probably see to publication of the data and our experience in a scientific journal.

Thank you once again for being in touch.

Spam
Photo of Bettina Fliegel
Team

It is nice to meet here again! Wow, that is very encouraging, that parents are continuing to bring their children for follow up care!
Are there enough special education teachers to reach the number of children that might need individual services through the mobile school?

Spam
Photo of Muideen Bakare
Team

The Special Education Teachers are not enough for now in the community where we presently work. However, if we put up an advert requesting for Special Education Teachers with some accompany remunerations, we are likely to get enough teachers for the children.