 | |
| Founded | 2003 |
|---|---|
| Founder | Cynthia Bauer and Leonard Mbonani Bikanga |
| Type | International NGO |
| 16-1644867 | |
| Focus | Humanitarian aid |
| Location | |
| Origins | Kenya |
Area served | Worldwide |
Key people | Cynthia Bauer, US CEO Leonard Mbonani Bikanga, Kenya Executive Director |
| Website | kupenda.org |
Kupenda for the Children is an American 501(c)(3) non-profit organization that works to improve the lives of children with disabilities in low- and middle-income countries. [1]
In 1999, Leonard Mbonani, a Kenyan special needs teacher, met Cynthia Bauer, an American graduate student, while she was conducting wildlife research on the coast of Kenya. Cynthia was born without her left hand and discovered that many people in Kenya believed disabilities like hers were caused by curses. She also learned that she may have even been killed if she had been born there. When Leonard introduced Cynthia to children with disabilities who did not have access to medical care or education, this inspired her to respond. In addition to providing educational assistance and medical interventions, Cynthia and Leonard worked with families and communities to change superstitions connected to disability. As a result of these efforts and needs, Kupenda for the Children was registered as an official nonprofit in 2003 with the vision of a fully-integrated society where people of all abilities have access to health, education, and a loving community.
"Kupenda ("love" in Kiswahili) for the Children is a registered 501(c)(3) nonprofit organization that has developed disability advocacy and training programs geared towards transforming negative beliefs surrounding disability to those that improve children's lives. Kupenda's vision is for a fully integrated society where people of all abilities have access to health, education, and a loving community. Kupenda focus on changing the views of community members and leaders who in many areas of the world, view people impacted by disability as cursed, leading to their neglect, abandonment, abuse, rape, and murder. Kupenda's primary focus is on children with disabilities who are often marginalized and excluded groups in society according to the World Health Organization.
Kupenda's multilevel strategy is consistent with the social ecological model for social and behavioral changes that improve the lives of people living with disabilities:
The organization's strategy is directed towards three major program areas:
Kupenda for the Children is registered in the U.S., and its partner organization, Kuhenza for the Children, is registered in Kenya. Both organizations report to their respective national governments, manage their own operational funds, and are overseen by their own Boards of Directors. Each year, Kuhenza and Kupenda collaboratively fundraise to support their joint projects. The organizations have been co-designing and co-implementing disability programs since 2003. [3] [4]
Kupenda's Innovation and Testing Center is in Kilifi County, Kenya, where they have worked alongside Kuhenza for the Children to help thousands of children with disabilities access care and support since 1999. This county is also where they use human-centered design strategies to develop and test their disability training content for pastors, traditional healers, as well as other government and other community leaders. Kupenda's disability advocacy approaches and materials are also being led, adapted, and replicated by other organizations and government entities around the world.
Kupenda works with children and youth between the ages of 0 and 25 who are living with a long-term disability. They use the United Nation's definition of disability, which includes “those who have long-term physical, mental, intellectual or sensory impairments, which in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others.” Some examples of their beneficiaries’ disabilities include albinism; attention deficit hyperactivity disorder (ADHD); autism spectrum disorder (ASD); bipolar disorder; blindness and visual impairment; brittle bone disease (osteogenesis imperfecta); cerebral palsy (CP); cleft palate or lip; club foot (talipes); dissociative identity disorder (DID); Down syndrome; dwarfism; dyslexia; epilepsy; fetal alcohol syndrome disorders (FASD); generalized anxiety disorder; hearing impairment; hydrocephalus; limb deformity, loss, or reduction; major depression; microcephaly; muscular dystrophy; obsessive-compulsive disorder; post-traumatic stress disorder (PTSD); reactive attachment disorder (RAD); schizophrenia; spina bifida (SB); spinal cord injury; spine curvature disorders; Tourette syndrome; and traumatic brain injury (TBI).
Leonard Mbonani, a Kenyan special needs teacher, met Cynthia Bauer, an American graduate student, while she was conducting wildlife research on the coast of Kenya in 1999. Cynthia was born without her left hand and discovered that many people in Kenya believed disabilities like hers were caused by curses. She also learned that she may have even been killed if she had been born there. When Leonard introduced Cynthia to children with disabilities who did not have access to medical care or education, this inspired her to respond. In addition to providing educational assistance and medical interventions, Cynthia and Leonard worked with families and communities to change superstitions connected to disability. As a result of these efforts and needs, Kupenda for the Children was registered as an official nonprofit in 2003 with the vision of a fully-integrated society where people of all abilities have access to health, education, and a loving community.
1998 – Cindy Bauer first travels to Kenya as a biologist and learns about the challenges Kenyan children with disabilities face.
1999 – Cindy meets Leonard, a Kenyan special need teacher, who introduces her to children with disabilities on the coast of Kenya.
2000-2002 – Cindy and Leonard collaborate on small-scale projects to raise funds and awareness for the children.
2003 – Cindy registers Kupenda for the Children in the U.S. as an official 501(c)3 nonprofit. [6]
2006 – A significant growth period allows Cindy and Leonard to formalize Kupenda's programs and hire a full-time staff. On May 6, Cindy receives a gold award in the volunteer category from the Federal Executive Board for founding Kupenda for the Children. [7]
2008 – To improve locally led, long-term solutions, Cindy and Leonard found Kuhenza for the Children and register this affiliate organization in Kenya.
2009 – A teacher's death due to false information from her church inspires Kupenda and Kuhenza to develop a disability advocacy training program for pastors.
2013 – The success of Kupenda's Pastor Disability Training Program inspires the staff to develop similar trainings for traditional healers, government officials, Muslim leaders, teachers, parents, and NGOs (including disability persons organizations), including partnerships with organizations such as Cross International. [8]
2014–present – Rising national and global interest in Kupenda's disability advocacy model inspires partners in 17 countries to begin using these approaches and tools to train families and local leaders as disability advocates in their own communities.
2017–2018 – Under a grant from the United Kingdom's Department for International Development (DFID), Kupenda conducted an 18-month, mix-method program evaluation that showed how UN Disability Training Program for Community Leaders were effective in reversing negative beliefs about disability. [9]
2021 – Releases a documentary film Kupenda that is awarded Best Long Documentary at the Inclús, Barcelona International Disability Film Festival, [10] and screened at ReelAbilities and Beloit International Film Festival. [11]
2022 – Kupenda becomes a member of the International Disability and Development Consortium. [12] [13]
2022 – Joins a USAID-project led by Action Against Hunger USA as a project resource partner. [14]
Kupenda is a niche organization focused on improving justice, care, and inclusion for families impacted by disability. Each year, Kupenda's work improves quality of life for more than 70,000 children with disabilities in low- and middle-income countries. [15] Based on the organization's 23 years of disability program design and implementation experience, Kupenda in collaboration along with Kuhenza, has provided technical services and training models directly to individuals and through training programs to other disability organizations, to include:
Muscular Dystrophy Association (MDA) is an American nonprofit organization dedicated to supporting people living with muscular dystrophy, ALS, and related neuromuscular diseases. Founded in 1950 by Paul Cohen, who lived with muscular dystrophy, MDA accelerates research, advances care, and works to empower families to live longer and more independent lives. Renowned for The MDA Labor Day Telethon, the annual telecast aired live every Labor Day weekend, with comedian and filmmaker Jerry Lewis as its host and national chairman. Don Rickles, Frank Sinatra, Sammy Davis Jr., Milton Berle, Wayne Newton, Norm Crosby, Don Francisco, Tony Orlando, Johnny Carson, Aretha Franklin, Maureen McGovern, Diana Ross, Angela Lansbury and others have supported MDA over the years. The organization's headquarters is in Chicago, Illinois.
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Health advocacy or health activism encompasses direct service to the individual or family as well as activities that promote health and access to health care in communities and the larger public. Advocates support and promote the rights of the patient in the health care arena, help build capacity to improve community health and enhance health policy initiatives focused on available, safe and quality care. Health advocates are best suited to address the challenge of patient-centered care in our complex healthcare system. The Institute of Medicine (IOM) defines patient-centered care as: Health care that establishes a partnership among practitioners, patients, and their families to ensure that decisions respect patients' wants, needs, and preferences and that patients have the education and support they need to make decisions and participate in their own care. Patient-centered care is also one of the overreaching goals of health advocacy, in addition to safer medical systems, and greater patient involvement in healthcare delivery and design.
Patient advocacy is a process in health care concerned with advocacy for patients, survivors, and caregivers. The patient advocate may be an individual or an organization, concerned with healthcare standards or with one specific group of disorders. The terms patient advocate and patient advocacy can refer both to individual advocates providing services that organizations also provide, and to organizations whose functions extend to individual patients. Some patient advocates are independent and some work for the organizations that are directly responsible for the patient's care.
Psychiatric rehabilitation, also known as psychosocial rehabilitation, and sometimes simplified to psych rehab by providers, is the process of restoration of community functioning and well-being of an individual diagnosed in mental health or emotional disorder and who may be considered to have a psychiatric disability.
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