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Providing inclusive accessible health care for people with an intellectual disability

Designing a video curriculum to train health care practitioners on intellectual disability and treating this population

Photo of Ancilla Smith
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What problem does your idea solve?

People with an intellectual disability (ID) in South Africa and Africa face enormous challenges and disparities in accessing health care and yet they present with more health conditions than the majority of the population. Adding to this challenge is the fact that the majority of health care workers are not trained on how to deal with people with an intellectual disability. We believe that training will help to create more inclusive and effective treatment and healthcare for people with ID

Explain your idea

We aim to reduce the disparities faced by our population by increasing the awareness of the health needs of people with ID among human sciences student at Universities and colleges in South Africa and across Africa by training on inclusive health services and by lobbying for amendments to the curriculum to provide for a better understanding of this population. Health practitioners need to be trained to be able to assess people with an intellectual disability and have practical sessions where they are able to interact with people with an intellectual disability as part of their clinical training. The training of the students can be done through a video developed specifically for the South African and African context. The practical training will take place at a Special Olympics Healthy Athletes screening. There are an estimate of over 5 million people in Africa alone with an intellectual disability who will all need medical treatment at some point. The video would be able to be easily adapted to other African countries by recording a voice over in the local language. The video would also have add-ons that would train students from specific medical departments on specific requirements for their departments. All Special Olympics programs in Africa run identical health programs so they would all benefit from the development of this video.

Who benefits?

The primary beneficiaries are people with an intellectual disability. The primary beneficiaries are of all ages, sex, race and religion. The secondary beneficiaries will be the family members and caregivers of people with an intellectual disability as well as health practitioners as this will broaden their knowledge on practicing inclusive health. These benefits would apply to all African countries.

How is your idea unique?

There are currently no other initiatives that we are aware of in South Africa that are addressing this issue. We are also the only organisation in South Africa that is focused on the health needs of people with intellectual disabilities and that is promoting inclusive health for this population. Special Olympics international has become the largest global public health organization dedicated to serving people with intellectual disabilities at no cost. We will be able to bring the resources and experience from many other Special Olympics programs in Africa and across the world to bear in designing this project in South Africa. Once the project has been piloted it would be made available to all Special Olympics programs in Africa and then potentially to our other programs globally.

Tell us more about you

Special Olympics South Africa, an NGO, has been an accredited program of Special Olympics International since 1991. Currently Special Olympics South Africa provides year-round sports training and athletic competition in 18 sports to over 50 000 athletes in nine provinces. Special Olympics offers its services to all qualifying individuals, regardless of their race, gender or age. We have a robust health program and have a health manager and other staff who will be working on this idea.

What are some of your unanswered questions about the idea?

We are still working on developing relationships with universities and we know that we will have to do a lot of work on cementing these relationships and convincing them to implement this training. We have begun discussions with a number of Universities who are keen to get involved with the development of the video. We have also reached out to our Regional clinical advisers and our global office for their input on this idea. We are working with the Ministry of Social Development on other projects and will involve in this project as well. We are also working on developing a relationship with the Ministries of Health and Education to lobby to have this video become a curriculum requirement.

Where will your idea be implemented?

  • Ghana
  • Kenya
  • Malawi
  • Nigeria
  • South Africa
  • Tanzania
  • Uganda
  • Zambia
  • Zimbabwe

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 initially were looking at implementing this idea in South Africa but based on the feedback we have received from colleagues working in other African countries and from our global office we have realized that we need to look at creating a video that can easily be be adapted for use in any country in the world. From the feedback that we have received it is clear that there is a need to train health practitioners in many countries on working with people with an intellectual disability as there is no current curriculum for this. This training video will benefit the lives of an entire population of people that are currently misunderstood and not catered for in health systems in countries across Africa.

Who will implement this idea?

The idea will be implemented by the Special Olympics South Africa management and health staff and our clinical professional volunteers. We will also receive support from our global office and international health care experts. We will consult with our colleagues in the other African countries where we have programs for their input; and with universities in South Africa and the Ministry of Education.

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?

Our organisation is accredited by our global body but is an independent body with its own board and run by the CEO. The CEO is leading on this idea and is able to make strategic decisions independently and would be able to quickly react to changes that need to be made. The organisation is also athlete led meaning that we have people with an intellectual disability involved in the process from beginning to end. In terms of getting buy in we have already consulted with the global office and they are in full support to help to develop this idea.

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

What attracted us to this funding model was the support and tools offered to help develop our idea. This would provide us with the opportunity to grow and evolve the idea through a process of learning and collaboration with the option of making necessary changes to ensure the success of the project. It can also be a work in progress where we can be open about our areas of concern where we don't have all the answers yet but are encouraged to collaborate in an open forum to seek the answers. LOVE

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?

People with an intellectual disability are often deprived of access to health care and when they do get to visit a health practitioner often the practitioner had has no training or experience in dealing with intellectual disability. This leads to many problems in diagnosis and treatment.
Going to see a doctor can be very intimidating and scary for someone with an intellectual disability and if they are not given the proper support and reassurance the experience can be very traumatic. The majority of people with an intellectual disability cannot read or write and many struggle to communicate making it very difficult for them to go through the normal processes associated with a doctors visit and examination. An untrained doctor could easily handle and treat this patient incorrectly

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?

We aim, through the creation and implementation of this video curriculum at universities and other tertiary institutions across South Africa and in 8 other African countries that have Special Olympics programs, to ensure that health practitioners leave these institutions with the skills necessary to provide quality inclusive healthcare for the over 700 000 identified Special Olympics athletes in Africa and the many more people with intellectual disabilities that live here.

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 10-20 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.sosouthafrica.org.za
www.specialolympics.org

32 comments

Join the conversation:

Comment
Photo of Mashane Nthutang
Team

Truly inspired, and indeed seeing the impact that will be created by the videos as part of the curriculum in Universities and other tertiary institutions. This will indeed ensure that Healthcare professionals/practitioners will at least be exposed and informed to provide primary health care and access to people with intellectual disabilities. The idea will spread out in the entire Region/Continent and accessibility will be possible for healthcare and while knowledge has been shared with the healthcare practitioners which also has personal gain of making an impact in the lives of the marginalized. True wealth is great health. I fully support the idea and wish to see it unfold in the mentioned countries.

Photo of OpenIDEO
Team

Hi Ancilla Smith 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.

-Special Olympics offers its services to all qualifying individuals, regardless of their race, gender or age. I think this inclusive approach makes this idea exciting.
-This is a good idea in terms of addressing a large proportion of the population of South Africa, who are currently neglected in terms of their identified health needs.
-The training programme demonstrably addresses both the stigma and opportunities elements of this Challenge.
-Is this training already part of the general medical curricula and needs to be improved? Or it’s not included at all yet?
-Are there other NGOs in South Africa who provide health training and screenings?
-Does your team have any relationships with South African universities and the South African Ministry of Health yet? Convincing medical training institutions to include this curricula may be smoother if they are involved in developing the content.
-Training local people to do the training may be helpful as they understand the communities in which they serve.
-Branching out beyond medical students to include teachers, community health workers, nurses, physical/occupational therapists, etc. may be interesting.
-How does your team plan to meet the needs of family members and caregivers of people with an intellectual disability?
-How have you engaged people with intellectual disabilities, their families, the institutions, and medical professionals in the development of the curriculum?
-In a bit more detail, what does the program include?

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 Ancilla Smith
Team

Hi Amplify team.

Thank you again for the feedback. We have decided to answer in more detail on here as well.

Special Olympics offers its services to all qualifying individuals, regardless of their race, gender or age. I think this inclusive approach makes this idea exciting. * thank you. We are also very excited about the potential of this idea for our "athletes". This is how we refer to our members so if we mention athletes in our discussions this is who we are referring to and this includes all ages, race and gender :)

-This is a good idea in terms of addressing a large proportion of the population of South Africa, who are currently neglected in terms of their identified health needs. * Yes. There are an estimated 3 million people with an intellectual disability in South Africa and we are very excited that after reaching out to our colleagues in the rest of Africa there is a clear need to broaden the scope of our idea.
-The training programme demonstrably addresses both the stigma and opportunities elements of this Challenge.
-Is this training already part of the general medical curricula and needs to be improved? Or it’s not included at all yet? * In South Africa it is not included at all. from feedback from other African countries it appears that it is not included in any that we have had feedback from.
-Are there other NGOs in South Africa who provide health training and screenings? * Not that we are aware of for people with an intellectual disability
-Does your team have any relationships with South African universities and the South African Ministry of Health yet? Convincing medical training institutions to include this curricula may be smoother if they are involved in developing the content. * We have some relationships and we have reached out to them for feedback and also to request that they be involved in the development of the curriculum. Our global body has also provided feedback in that there are resources that can be consulted in creating these video training tools – including AADMD’s curriculum, including Vanderbilt Kennedy Center’s resources, including our own HA training materials.
-Training local people to do the training may be helpful as they understand the communities in which they serve. * The training will be in video format that we feel could be easily adapted by recording a new scripted voice over in the relevant local language.
-Branching out beyond medical students to include teachers, community health workers, nurses, physical/occupational therapists, etc. may be interesting. * This is a great idea. We are now looking at the development of modules so that some will be relevant to a much broader cross section.
-How does your team plan to meet the needs of family members and caregivers of people with an intellectual disability? * We currently have a family support network and we run what we call Family Health Forums where we educate family members and caregivers on how to care for people with an intellectual disability, we think that if we develop modules as discussed above we may be able to do this kind of training on a much larger scale.
-How have you engaged people with intellectual disabilities, their families, the institutions, and medical professionals in the development of the curriculum? * Yes. Our organisation involves people with an intellectual disability and their families, caregivers and educators on all levels of the organisation. We have consulted our clinical volunteers in this proposal and they will all be involved in the development of the curriculum.
-In a bit more detail, what does the program include?
SSpecial Olympics is the leading voice in raising awareness about the abilities of people with intellectual disabilities.Through sports, we showcase the skills and dignity of our athletes. We also bring together communities to see and take part in the transformative power of sports. We know the odds our athletes must overcome and the barriers they face every single day. We see this at training events and competitions as our athletes push to beat their personal bests -- and exceed them.
Outside of our sports and training activities we work to spread compassion and acceptance in a way that can unite the world. Our goal is to awaken everyone -- and every community -- to each person’s common humanity. This vision of inclusion starts at the local level. It is expanding on a global scale.
Special Olympics is also the world's largest public health organization for people with intellectual disabilities but in Africa we have a long way to go to provide inclusive healthcare and this is why we have entered this challenge.

Photo of Ancilla Smith
Team

Feedback from Special Olympics International:

For whatever reason I get an error message (oops, something went wrong with our server) when I click Comment.

But what I want to feedback is it may be good to reference that resources exist that will be consulted in creating these video training tools – including AADMD’s curriculum, including Vanderbilt Kennedy Center’s resources, including our own HA training materials.

They would all need to be adapted – they are quite US centric and that should be mentioned so it doesn’t sound like these resources exist and therefore this need is already addressed.

But Ancilla, SOI is thinking about a broader strategy on training health workers – and developing online modules to that end. It goes beyond healthcare providers and also includes ministry officials and public health workers, but I wonder if it bears mentioning the potential impact of the resource you create beyond Africa. I am sure what you develop would have to be adapted for global use, but much of it could be quite relevant

Photo of Sbusiso Ngcobo
Team

This is an amazing initiative, I cant wait to see this unfold

Photo of Ancilla Smith
Team

Thank you Sbu.
Please provide any ideas that you may have on how we could improve this idea.
Kind regards,
Ancilla

Photo of Sbusiso Ngcobo
Team

This curriculum should be made a compulsory module in all University faculties. It must not come as a heavy module but a more easier and fun module yet very informative and students will be able to gain and understand the purpose of the module and the content. Some universities already have Academic Development Centers in that way this module can be introduced throughout faculties. This type of module will definitely produce graduates/students that are well informed about people with intellectual disabilities

Photo of Fahmidah Ameer
Team

Hi Team.
This is an awesome initiative. There is an extreme need for this at a tertiary level in order for inclusivity.

Photo of Ancilla Smith
Team

We completely agree Fahmidah

Photo of Onolee Stephan
Team

Hi Ancilla and Team,
I think your proposal looks great. One thought I have, and you may already be thinking of this, is to include people with intellectual disabilities and their families in the video that you create for teaching the medical professionals. Hearing directly from the people impacted can be incredibly powerful and have a longer lasting effect than just hearing it from another medical professional or expert. The other idea that I have, and again you may already be thinking of this, is to evaluate the impact of the training on the healthcare professionals. This could be done with a pre-post survey and a follow up interview.

Photo of Ancilla Smith
Team

Hi Onolee
Thank you for the great feedback. We will definitely have people with an intellectual disability and their families fundamentally involved in the development of the video and the curriculum. Our athletes are currently involved involved in the development of all the curriculum that we develop. Your idea of using them in the actual video is a great one and makes so much sense. This is definitely something that we will incorporate. We will also include the monitoring and evaluation idea as I think it would be critical for us to be able to assess the value of the video.
Thanks again,
Ancilla

Photo of Mary Masipa
Team

Really impressive and promising initiative! The more people are made aware of and trained to provide efficient healthcare services for people with an intellectual disability, the better. I especially like that it's aimed at students as they are still in the learning stages of providing healthcare services.

Photo of Ancilla Smith
Team

We agree Mary. We are really hoping that the universities and colleges see the value in this in terms of making healthcare accessible to people with an intellectual disability.

Photo of Kubby Mathekga
Team

This is an amazing opportunity for us as individuals do our best in playing a role in making a difference.
 Thank you Ancilla Smith ♡

Photo of Shilla Ndegeya
Team

I have loved the new Initiative brought on the net. Thanks Ancilla

Photo of Ancilla Smith
Team

Thank you Shilla. We are looking at working across borders now to see how we can create a curriculum that can easily be adapted for any country.
Is this something that you think would be able to be utilised in Rwanda.
Your feedback on how this might be implemented there would be very useful.
Kind regards,
Ancilla

Photo of Shilla Ndegeya
Team

Stigma is among the major reasons as to why people with intellectual disabilities are always left behind when it comes to community recognition. And i believe with this new initiative you brought, many will share discussions whereby they will be so much helpful on our programs as a way of fighting stigma. I add on by saying that, People with Intellectual Disabilities should be given time so that they utilize it while expressing themselves as well as raising their voices too in the public. we valuing their speeches or ideas pointed out by them, will be showing their potentiality in the communities. I loved this initiative so much.
Thanks much Ancilla

Photo of Phillip Phillip
Team

What a great opportunity

Photo of Ancilla Smith
Team

Thank you Phillip. Please add any ideas about how you feel we may improve our idea.

Regards
Ancilla

Photo of Wanga Manyala
Team

Woow. Looking forward to this great initiative Ancilla. Given the opportunity; one should be part of the challenge.

Photo of Ancilla Smith
Team

Thank you Wanga. Any input that you can provide as to how we could improve this idea would be greatly appreciated.

Regards Ancilla

Photo of Nontsasa Sangotsha
Team

Wow guys, what an initiative? let's join this it will be grateful for all of us!!!

Photo of Ancilla Smith
Team

Thank you Nontsasa. Your input would be much appreciated as we develop this idea.

Photo of Virginia Williams
Team

Hi Ancilla,
I like your idea a lot, definitely needed. I look forward to seeing your user experience map.
Virginia

Photo of Ancilla Smith
Team

Hi Virginia,
Do you have any idea of how to upload the map? I am not seeing an update button anywhere.
Kind regards,
Ancilla

Photo of Lubabalo Mbeki
Team

I am experiencing the same problem, I cant find the upload button.

Photo of Virginia Williams
Team

Hello fellow OpenIDEOers! I’m having the same problem too, but I was told we have to wait until tomorrow, which is odd because I know I saw the upload button before, and it’s on our checklist! At least we are all in the same boat. I will let you know what I find out.

Photo of Ancilla Smith
Team

We can upload later today! Thanks Virginia.

Photo of Sightsavers
Team

Interesting project. We too work to provide more inclusive health services, it is such an important issue!
We like the idea of working with colleges and universities, as it creates the conditions for a more sustainable impact.

Are you planning to develop and roll out a standard training package? And do you think this could be adapted to other countries and tested in different contexts?

Best of luck!

Photo of Ancilla Smith
Team

Thank you!
Yes we are planning to develop a standard curriculum that can be adapted across all medical disciplines where necessary.
We would also be looking at how it can be adapted into different countries.
We would be very interested in any learning that you may be able to share from the work that you are doing.

Photo of Ashley Tillman
Team

Hi Ancilla, thank you so much for contributing to the Challenge!

You mentioned that you are currently working on partnerships, what are one or two of the strategies that are working so far?

Excited to learn more!

Photo of Ancilla Smith
Team

Hi Ashley,
We currently run Healthy Athlete Screening were we bring Clinical professionals (our partners) that have been trained in dealing with people with an intellectual disability together to screen our athletes in 7 medical disciplines. We are normally able to screen around 300 athletes at a time but that is not even the tip of the iceberg. We therefore feel that having medical professional trained in dealing with people with an intellectual disability when they are studying will create a more inclusive health care system that would be able to cater to the needs of so many more. It is also a problem if our athletes get a referral for a medical condition and have to see a professional that has had no training in dealing with a person with an intellectual disability.
Many of the athletes that attend our screenings have never had access to health care before!
We are very fortunate to receive funding for our screenings from the Galisano Foundation and from Lions Club International.
Our clinical professionals are all volunteers that come through on the day to run the screenings.