Jul 15, 2021

Why does Kyaninga need to build a Centre of Excellence

Brinca in class
Brinca in class

A Centre of Excellence is a team, shared facility or entity that provides leadership, best practices, research, support and/or training for a focus area. There is no such entity clearly identified within Uganda in relation to disability, which has a severe impact on the awareness and understanding of disability, limits inclusion and integration of people with disabilities into society and influences economic, social, education opportunities for children with disabilities.

Early Discrimination

In Uganda, children with disabilities are discriminated against almost from birth, denied access to early medical interventions from health facilities and neglect from families is more prevalent due to poverty levels and a distinct lack of knowledge on disability.

Approximately 13% of children in Uganda are living with a disability

In most cases, disability discrimination is accelerated by widespread community beliefs. People in Uganda see disability as a curse; they think something must be wrong with the family to produce a child with disability. This stigma runs through the whole community and causes fear and exclusion. Because of these negative beliefs, there is little engagement or investment into opportunities for children with disabilities and they are seen as having no potential for the future.

Contributing to, and confirming, these beliefs is a significant lack of role models for disabled people within Uganda. Communities are only used to seeing disabled people begging on the streets, or they become invisible because they are hidden away by families and do not actively contribute or participate in their community. There are no prominent people with disabilities in the media, business or sport and widespread digital poverty limits access to online information.

Impact on Education

These early discriminations and exclusions also have an impact on education; only 9% of children with disabilities attend primary school, further limiting future potential for employment, financial independence, and contribution to society. They are also denied the potential for interpersonal skills, initiative, and creativity. One of the most effective ways to eliminate the barriers facing CwDs is inclusive education, whereby every student, regardless of his or her background, ethnicity, religion, abilities, or disabilities, learns in the same classroom, where their peers see beyond the disability and change their own established mindsets.

Be the Change

For the past 7 years, Kyaninga Child Development Centre has been educating parents, caregivers, community members, healthcare workers and teachers to understand what disability is, what the causes are and how to care for and manage children with disabilities.

We train parents with the skills and knowledge to support their child and advocate for their future, providing practical skills to ensure they thrive, including positioning, feeding and communication skills and inclusion in all activities and preparing for school. This training has been proven to improve a carers quality of life by an average of 25%.

"The group sessions are very helpful because they help us not to feel alone. Imagine some of us you find you are the only one in the whole village with a child who has a disability …. It feels bad to hear your child being called names. I feel consoled when I meet with other mothers on these occasions, and we share what we are going through.” (Mama Patience)

Workshops for healthcare workers and teachers provide participants with knowledge about identifying and managing children with disabilities, and practical skills and solutions to apply within their own settings. These workshops, which encourage open discussion and sharing of myths and stigmas, are a powerful tool to effect behaviour change amongst stakeholders and have resulted in increased confidence in engagement with families of disabled children and increased referrals for therapy intervention and enrolment into primary school.

“The training gave me an unforgettable experience because I never knew children with disabilities can make it in life and be able to participate. We saw a video clip of a child who had cerebral palsy and was able to go to school. It gave us hope and the strength to care for these children because now we understand it won’t be wasted energy.” Healthcare worker.

We also work alongside teachers to increase their capacity to have an inclusive, child-led learning classroom and can identify individual learning needs and create an individual learning plan for students with additional needs, thereby providing equal opportunities for children.

"I never had hope in these children, I used to think they were already wasted children and I couldn’t care much, but now I understand that they can improve, and I also give the mothers hope.” Teacher in primary school.

So… a Centre of Excellence

The goal of Kyaninga Child Development Centre is to ensure children with disabilities and their families have access to equal opportunities and thrive without stigma and discrimination in their communities using a holistic, community-based rehabilitation model. To do this more effectively and create lasting change, we are creating a purpose-built centre of excellence that will become a radiating beacon to show disability does not disqualify anyone from having equitable access to every aspect of life. Our centre will not only enhance our therapeutic effectiveness and ability to care for more children, provide practical help and information on human rights, access to education, adaptive equipment and assistive technology, and specialized therapy but also nurture self-advocacy to create a permanent shift in society about what disability is. 

We share the knowledge that we have been provided with to educate fellow parents, help other fellow parents' children by making referrals to KCDC so that they are able to get appropriate help” (Mama Simon)

KCDC has outgrown its current accommodations, which do not have all the facilities that we need to reach our own potential, including:

  • Multiple therapy rooms to support the increasing number of children requiring out-patient therapy interventions
  • Hostel facilities for families requiring longer-term rehabilitation or those from a long-distance
  • KCDC Education Hub, providing inclusive education best practice training for teachers and school administrators
  • Kyaninga Inclusive Model School – a demonstration of best practice in inclusive education
  • Conference/Training – to host regular training workshops for healthcare and community workers, local leaders, and other stakeholders.
  • Administration offices – increased office space for KCDC’s increasing team members

“The project has brought light. The light it has brought is that no one used to care about children with disabilities, no attention was given, no guidelines existed. The project has changed that; the HCW training, the information posters and having a clear referral system. It has been positive for the district. It has made the HCW work easier, and they have gained confidence as they have been empowered by KCDC… The project has also put a smile on the face of the mothers with children with disabilities, I know that for sure. They were hopeless, our health care system didn’t respond to their needs. This project has given them access to appropriate services.” District Health Officer, Kabarole

Together, let’s build an inclusive future for Uganda’s children!

Parent support and education is key to success
Parent support and education is key to success
Practical training workshops
Practical training workshops
Family strengthening promotes inclusion
Family strengthening promotes inclusion

Links:

Jun 28, 2021

A shift in the delivery of therapy for CwDs in the time of the COVID-19 pandemic

A shift in the delivery of therapy for Children with Disabilities in the time of the COVID-19 pandemic

Currently, Uganda is seeing a sharp increase in COVID-19 cases, forcing its health officials to take stern emergency measures. From 200 cases per day in April, the East African country is now recording over 1,000 cases per day amid a looming vaccine shortage after receiving a total of 822,000 vaccines in March. With a population of 47.2 million people and 4,129 fully vaccinated, this leaves a total of only 1.9% of the population that have received at least one dose of the vaccine. 

According to the Ministry of Health, Uganda received a donation of 175,200 doses of AstraZeneca vaccines on June 17th from the government of France, however, this is still not sufficient for the 812,118 people who are either due for the second dose or are nearing the eight-week time from which they should go for the second round. An additional 688,000 vaccines are meant to arrive in August but some health officials believe this will be too late. With current cases standing at 75,537, recoveries at 50,350, and 781 registered deaths, the current lockdown restrictions might be extended until a higher percentage of the population has been fully vaccinated. This has doubled the numbers from the previous 12 months in just 1 month.

In response to the first wave of the COVID-19 global pandemic, the Ugandan Government introduced a set of strict measures in mid-March 2020, to prevent the transmission of the virus in the country. These restrictions were put in place as the healthcare system would be unable to cope with the high numbers of cases seen in other countries. The restrictions that were put in place last year certainly slowed the transmission of the virus but severely impacted people’s livelihoods, and the negative socioeconomic effects have continued into this year as well. As of June 18th, 2021, a new set of lockdown measures were enforced, further negatively impacting our families, who survive on a meagre daily income of less than $1 a day. They are now experiencing increased levels of poverty, increased food insecurity, and decreased access to basic health care and education services and therefore, a growing need for support.

During the nationwide lockdown last year, we recognized the growing desperation and need for ongoing therapy, medical, nutritional, and education services from our clients. KCDC then launched a small campaign called Buckets of Love after the initial response and was able to raise $5000 which enabled us to continue to support more of our families during the ongoing pandemic including families affected by the seasonal flooding in the Kasese district. We were able to reach over 400 families to provide therapy, education, and nutrition packs as well as epilepsy medication.

With new lockdown measures in place, the growing need for support for our poorest and most vulnerable families is rising. The need for children with disabilities to be provided with therapy, nutrition interventions, special education support, and essential epilepsy medications during this time is as important as oxygen support for children without disabilities. Without our support, our children who are already vulnerable are at risk of regression in therapy milestones, increased health complications, and possible death.

Through our Community Nutrition Program KCDC has intensified home visits in order to provide nutrition services and therapy following the Standard Operating Procedures in efforts to address humanitarian relief concerns, cognizant of the growing need for medical services and the increasing number of children reported to be suffering from malnutrition.

Nutrition

Charles - Speech and Language therapist, and Rehema - Nurse

Derrick, now aged 2 years and 10 months presenting with Cerebral palsy and seizures, was seen by KCDC team in march 2021, brought by a grandma who for the last 2 weeks took care of him after being abandoned by his mum who had already moved on for another marriage. 

Derrick was found to be severely malnourished weighing 6.4kgs and very weak and passive and could not undergo physiotherapy. He also had significant feeding difficulties which could have contributed to the malnutrition.

 Feeding therapy was done and a referral was made to Fort-Portal regional referral hospital for further management of malnutrition and seizures.

 Derrick greatly improved from severe acute malnutrition to mild malnutrition and controlled seizures. He is now more active, responsive to stimulation, tries to explore his environment, started physiotherapy, and now makes attempts to sit.”

 

Without adequate nutrition for Children with Disabilities (CwDs), therapy interventions will not be successful. The children are already weak and any energy they have left is being used for basic survival and therefore no extra energy to build and develop muscle mass. Nutrition is not only key for CwDs overall health but also plays a major role in their therapy. 

KCDC’s main goal is to ensure that CwDs have access to equal opportunities and can thrive without stigma and discrimination in their communities using a holistic, community-based approach which includes; provision of specialist therapy services, raising awareness of disability amongst community members, providing training to caregivers, healthcare workers, and teachers and providing economic empowerment training to caregivers of CwDs.

Due to the current nationwide lockdown and restrictions, including the closure of all schools, we have had to suspend all our outreach and community activities and are focusing on home-based therapy, education, nutrition, and medical interventions.

When restrictions are finally lifted, we will resume our normal outreach and community activities however due to the current situation, we would like to carry out the following to address the current needs of our children and families:

     Increase the number of home visits due to travel restrictions where some families are not able to come to outreaches due to social distancing and limits on gatherings at local health centres and distribute essential epilepsy medication to our children.

     Provide home-based physiotherapy intervention to children and families that are recovering from COVID-19.

     Provide Ready to Use Therapeutic Foods (RUTF), basic foodstuffs, and high yield seeds for sustainable nutrition to combat malnutrition and increased food insecurities faced by families.

     Provide awareness materials to empower our parent group leaders, who are extremely valuable as they are on the ground, to educate their peers and community members about the gravity of the new strain of the virus and the importance of keeping their children who are already vulnerable as safe as possible to prevent further health complications.

     Provide PPE to our therapists and special education team to ensure their safety as well as protecting our children and families from contracting Covid-19.

     Conduct home-based education sessions using Individual Learning Plans (ILPs) to ensure children are supported in their learning so that when schools eventually reopen, they are in a better position to be reintegrated in the classroom.


Attachments:
Mar 24, 2021

Building businesses

What a year it has been for all of us. Though we are all affected by the global COVID-19 pandemic, we are experiencing it in very different ways. For some, there are high numbers of cases, thousands of people unwell and a strain on the healthcare systems with devasting loss of life. Ongoing lockdowns and school closures continue to disrupt our way of life.

In Uganda, we have been fortunate to avoid the predicted high number of cases and loss of life related to the virus, and with the vaccine programme beginning its roll-out in the last week, the cases should remain low, currently 40,687 and 334 deaths. But the socio-economic impact of the past year will be felt for many years to come. Although we have not been in ‘lockdown’ since July 2020, there are still many businesses that are unable to open, and with a 9pm curfew in place, bars and restaurants have limited opening hours. Tourism, the country’s largest source of income, has effectively shut down as the world stops travelling.

All schools were closed in March 2020 and reopened for candidate classes – final year students in primary and secondary school and university – in October 2020 to prepare for their transition exams. The pre-candidate classes returned to school at the beginning of this month, one full year since their last class and in the rural schools, there has been no online learning, no work sent home or activity books to ensure ongoing learning. Many of these children have been at home, working in the fields and at the markets, and the early reports from schools that we work with is that many of these students will not return to complete their education, even at primary level. Early years classes are not expected to return to school until June 2021.

A further limitation to children returning to school is their parent’s ability to pay the school fees. With many people out of work or making a smaller income, this becomes a challenge, and families will often have to choose who gets an education, and culturally, boys are more likely to be prioritised than girls. It is even harder for those who survive on subsistence farming, without a regular income.

In 2017, we began our first Street Business School programme, a 6-month entrepreneurial business training programme for parents and caregivers of children with disabilities to empower them to lift themselves out of poverty. The training includes starting small, market analysis, bookkeeping, savings and investments and does not require large capital to start, in fact, participants are taught how they can start a business with only a $2 or $3.

Last week, our first group of 67 parents and caregivers in Kasese District graduated from the programme. These were from 4 rural communities who have extremely limited access to education or employment and the excitement was palpable. Many of these new business owners had never even graduated from primary school and they were so proud as they marched through the streets behind the brass band, wearing mortarboards.

During the graduation party, many shared their experiences and how the programme has changed their family’s life. Neckson, a father of 4, told us his story that he would always worry about money, how to make sure there was enough to eat, pay for school fees and healthcare for his son, who has cerebral palsy and epilepsy. He was thrilled to be able to participate in the training and found the information useful and relatable. He was able to sell some matooke (plantains) that grows in his garden for 80,000 shillings ($21) and he bought some dried beans (common staple meal) to sell to his village, reducing the need for them to travel to the market. By selling the beans and reinvesting the profits into more produce, he now has a regular income of 200,000 shillings ($54) each month, giving him more security for his family. He plans to continue reinvesting his profits to build his business, and to be able to rent a small shop rather than the wooden stall he currently uses.

Mama Juliet told us how she sold a chicken for 10,000 shillings ($2.70) to start her business, using this money to buy mukene (small silver fish) and selling them for 12,000 shillings. Again, she reinvested this money into her business and continued selling for a small profit, now she has 100,000 ($27) to spend when she goes to market and is able to diversify her business to meet customer needs. She is proud to call herself a businesswoman and is looking forward to being able to do repairs on her house before the rainy season.

The Street Business School programme is just one of the ways that Kyaninga Child Development Centre works to support children with disabilities and their families in rural western Uganda. Our proposed centre of excellence, which we hope to start building in the next few months will ensure that more caregivers, like Neckson and Mama Juliet, will be able to find rehabilitation and medical services for their children, parent education and peer support groups to support their own understanding of disability, special education to enable their child to learn in an inclusive environment and economic empowerment to provide a secure future for their family.

Marching through the streets
Marching through the streets
Celebrating in song
Celebrating in song
Sharing testimony and displaying her products
Sharing testimony and displaying her products
Mama Juliet
Mama Juliet

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