Since childhood, Victoria Chibuogu Nneji, Ph.D., has been assisting with caregiving for family members. This involved not only direct care, but scheduling appointments and filling out paperwork, among other responsibilities.
The challenges of navigating the legal, healthcare, and insurance system during the pandemic led Nneji to spend a month reading over 300 pages of the state’s insurance policy—something she said no one else should have to do.
“I just remember feeling really alone with caregiving and feeling really lost navigating the wilderness of disability services,” she said.
This journey led Nneji to AKALAKA, a startup she founded to help care partners better sustain long-term care for those with intellectual and developmental disabilities in home- and community-based settings. The word “Akalaka” comes from her native language of Igbo and has the literal meaning “handprint” and figurative meaning “destiny.” Nneji said everyone has a shared destiny of receiving or giving care at some point, and working hand-in-hand, care partners can go through their journeys together.
To that end, the Nneji’s Durham-based startup provides resources and connectivity for care partners, offering services such as informational webinars and peer-matching.
Throughout Nneji’s customer discovery in the summer of 2021, she interviewed 91 care providers for people with a range of disabilities, including autism, cerebral palsy and Down syndrome. She found that parents and other relatives often need to care for their family members into adulthood. Nneji said these conversations validated her own experience, as she spoke with many care partners who had also felt lost during major transitions of responsibility.
Nneji founded AKALAKA in the fall of 2021 with the intent to first understand the problems before developing technology. She holds one-on-one consultations with care partners who are seeking support, and she addresses their problems and connects them with peers.
This year, AKALAKA is beginning to build new technology that will enable more people to access their services at any time. The new technology will be released in some capacity this fall.
The startup’s initial target market consists of recipients of North Carolina’s Innovations Waiver, which is a form of long-term care insurance offered by Medicaid. Nneji said people who are enrolled in the waiver program often don’t understand all of the benefits they are eligible for. Accordingly, AKALAKA’s goal is to help people in the program better understand how the insurance policy can serve their needs.
One of the first things Nneji did with AKALAKA was lead an online cohort about the Innovations Waiver helping care partners interpret the state’s insurance policy. Each week, participants would learn the content and connect with their peers live.
Participants rated their level of clarity with the content each week, and on a scale from 0-10, their ability to navigate the waiver program improved by 167% after five weeks. Their connection with their peers increased by 80%, and Nneji heard from the participants that the connection piece was what they valued most.
The Road Ahead For AKALAKA
Currently, the startup’s primary source of revenue comes from the Innovations Waiver that covers AKALAKA’s services for members. Because many care partners are unemployed or underemployed, Nneji said she is looking to partner with additional health plans to cover the costs of AKALAKA’s services, in order to avoid charging individual members.
This past year, AKALAKA became a winner of Flywheel Foundation’s Health Equity Innovation Challenge, which provided the startup with funding from the Eli Lilly & Company Foundation. With this funding, Nneji and her team are planning to launch a pilot in Cabarrus County.
AKALAKA is also planning to launch a program with the NC Division of Aging this fall. The program will provide care partners with $750 reimbursement for respite care services. Primary care partners in North Carolina who are underinsured or unable to take advantage of other funding sources will be eligible for this reimbursement once per year.
Meanwhile, to further customer discovery, AKALAKA is pursuing additional funding for research on care partners who are in the African diaspora (including African Americans immigrants from countries in Africa and the Caribbean), which Nneji said is an underestimated segment of the market. To reach this population of care partners, AKALAKA has connected with nonprofits and grassroots organizations involved in the care partner community.
Nneji said she doesn’t see a lot of representation from people in the African diaspora in other spaces that offer resources and support for caregivers.
“It’s not that they don’t exist; maybe there’s something about how things are currently operating that doesn’t speak to them, and so we want to really understand that so that we can better serve this really underestimated group of people,” Nneji said.
More broadly, Nneji tapped into her educational background—she completed a master of engineering management, master of science in mechanical engineering, and a Ph.D. in robotics at Duke University—to describe her strategy:
“I’m taking a systems engineering approach to this very complex system that hasn’t really been taken before.”
