Covid 19

Emergency Plan to Address the Urgent Needs of Children with Disabilities during the Coronavirus Pandemic

Increased Vulnerability of Children with Disabilities

Children with disabilities are at higher risk of contracting COVID19 due to barriers to accessing preventive information and hygiene, reliance on physical contact with the environment or support persons, and respiratory and immune system challenges related to several disabilities.

Furthermore, implementing quarantines or similar restrictive programs entails disruptions in services vital for many children with disabilities and often undermines their basic rights to food, education, health care, wash and sanitation, and community inclusion.

These conditions can lead to further abandonment and isolation of children with disabilities and put them at higher risk for morbidity and mortality.

Realities in Kenya

These conditions are not hypothetical. Even in the best conditions, when Kenya’s schools close for term breaks and children are sent home to be cared for by their families (most of whom live in rural and poor communities), many experience illness, malnutrition, abuse and isolation. Often this is caused by negative attitudes towards the child with a disability. But even families who value their children often lack the income to purchase enough food and medicine for them and don’t have the skills to maintain their child’s optimal health, or their own.

Each year, Kupenda addresses these challenges by facilitating trainings on disability care and income-generating skills for hundreds of parents and leaders who then become advocates for the children with disabilities in their communities. But today, with Kenya’s schools closed and gatherings prohibited, such trainings are no longer an option.

More than 1,500 children with disabilities have been sent home from the 25 schools we support in Kilifi County. As a result, many are now living in rural, impoverished communities and being cared for by families who do not have enough knowledge or income to provide for their needs.

Remembering Janet

Janet Daniel had cerebral palsy and could not walk or speak. Her single mother struggled to earn enough money to care for Janet and her sisters by selling potatoes. Eventually, Janet’s grandmother took over her care. Kupenda helped her grandmother access nutritious food and weekly therapy for Janet. Janet’s grand-mother loved her and did all she could to care for her. Unfortunately, feeding Janet was difficult because her disability made it challenging for her to chew and swallow. One day, Janet started choking and her grandmother did not know how to help her. The child passed away in January of 2020. She was just 6 years old.

Kupenda supports hundreds of children, like Janet, who have been sent home from school to loving families who simply do not have the income or skills to keep them safe. We need emergency funding to develop resources and activate community leaders to train these families quickly and efficiently, so we do not lose even one more child during this pandemic.

Creative Solutions

  1. Food Relief: With schools closed, families impacted by disabilities (most of whom live in remote areas scattered throughout the poorest areas of Kilifi County) are in need of food. This includes families already living in poverty and those who are out of work because of this pandemic. In response, we plan to provide food to these families through the local leaders we’ve trained in their communities. Kuhenza’s offices will be a temporary food storage area. Our Kenyan staff, wearing personal protective equipment, will deliver food to community leaders to distribute to the families impacted by disabilities in their regions. The leaders will also be given transportation stipends, when needed, and funds to cover any costs incurred in this effort (since the leaders are also struggling financially during this time). We will also provide guidance on protective measures provided by the World Health Organization so the leaders can pick up the food and safely deliver it to the families with minimal risk of infecting the vulnerable children or their family members.

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  2. Medication: Many of our children need to be medicated daily for conditions like epilepsy, diabetes, HIV and pain management. Others need medicine to treat infections, malaria and diarrhea. We are calling all families to review their medication needs and help them comply with their doctor’s dosage and frequency instructions. If families are running low on medications and cannot access health facilities to restock, our community leaders will deliver medications to them. Partnerships with clinics, dispensaries and hospitals are helping us ensure these leaders can refill and deliver medication in a timely manner, while keeping themselves and the family safe from infection.

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  1. Income Support: Kenya’s businesses are closed and most working families must stay home, as per directives from the government to reduce Coronavirus infection rates. Those who earned a small income from farming are also limited, as their children require more attention at home and there is little market opportunity now. Income-generating projects started by our parent support groups have also come to an abrupt halt since the government banned gatherings. Kuhenza can provide food, but families also need to pay for housing, transportation, clothing and toiletries –especially soap and water for Coronavirus prevention. Emergency funding is needed to keep these families safe and healthy. Our community leaders can help, not only to deliver funds, but also to counsel families on budgeting and how to access discount or free services and supplies.

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  2. Coronavirus and Home-based Care Guidance: The world is bursting with information on Coronavirus but so little of it is available in Swahili or with accompanying images to help low-literacy residents understand and apply the strategies. Furthermore, there is a dearth of information on homebased care guidelines for children with disabilities. Community leaders and family caregivers need simple, clear instructions for Coronavirus prevention, safe feeding, medication compliance, therapy exercises and nutritional well-being. Kupenda has already translated and disseminated Coronavirus guidelines in both hard copy and electronically through What’s App and text messaging. We are now working to illustrate, translate and disseminate homebased care guidelines for children with disabilities most at risk during this difficult time.

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  3. App-based Information and Reporting: In partnership with Dimagi, Boston University and Sabrams Consulting, Kupenda is developing two mobile applications to support community-based care and Coronavirus prevention. The first app has a questionnaire that community leaders can use to interview families and track the health and wellness of their child with a disability. The second app includes a community leader weekly reporting form and a series of informational resources including our Service Referral Guide, Home Visit Guide, Disability Guidebook, Disability Law Guides and Coronavirus Prevention best practices. Community leaders can refer to these resources during family counseling sessions and use the reporting form to communicate questions and needs to Kupenda and Kuhenza in a timely manner. Although our management staff and some of our leaders already have Smart Phones, those who do not can purchase them for just $115. Monthly data plans will enable these leaders to be in regular communication with families impacted by disabilities in their communities, as well as our local staff, to ensure these families have as much support as possible during this challenging time.

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Budget

  • $20 Can pay for epilepsy, malaria, or diabetes medication for a child for a month
  • $30 Can buy a data plan for a community leader so they can call families and provide COVID-19 screening and prevention and care information
  • $50 Can cover transportation fees to deliver food to 10 families in need
  • $80 Can feed an entire family impacted by disability for a month during the COVID-19 pandemic
  • $100 Can provide income support for an unemployed family for an entire month during the COVID-19 pandemic
  • $150 Can buy a community leader a cell phone so they can download Kupenda’s app and access COVID prevention and care information
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Impact

In the short term, this project will engage more than 100 community leader disability advocates who will support improved access to food, medicine and therapy to more than 1,500 children with disabilities and their families. Based on an average family size, the food and income support will benefit 5,000 people over the next 6 months. In the long term, the new training resources and mobile applications will be disseminated to our partners in low-income countries around the world to benefit hundreds of thousands of children with disabilities in need.

Conclusion

Kupenda and Kuhenza have the knowledge, reputation, resources, partnerships and community leader activists to equip families to meet the needs of their children with disabilities, but if we are to avoid more illness and death we must act quickly. Already our families are concerned about where their next meal will come from. Children with epilepsy are at risk of running out of medicine and those with cerebral palsy are at risk of developing bed sores from a lack of movement. Our community leaders are doing the best they can with what they have, but every day they tell us they need more food, medicine, protective equipment and informational resources that can be understood by their communities. Thank you for considering an investment in this urgent situation.