Kimberly Schreiber had built a career she loved, working in sub-Saharan Africa for Zola Electric to bring solar power to millions. But she couldn’t get her little brother Stephen’s situation out of her mind.
About one in 45 people in the United States has a diagnosis of autism, according to the Centers for Disease Control, and her brother is one of them. Stephen had aged out of the school-based system for people with developmental disabilities while Kimberly was living in Africa. Back in their parents’ home in Alexandria, Virginia, 22-year-old Stephen was now considered an adult, and there wasn’t a clear path to coordinated services or funding to support him.
“He was on a waitlist. He was living in my parents’ basement,” she recalled. He felt hopeless, isolated, and — even more than that — rejected by the community, she says. “That’s what our current system is geared to: an individual living in their parents’ basement.”
Historically, adults with developmental disabilities were often removed from their communities and placed in abusive or neglectful institutions. Although much has changed, Schreiber realized that her brother was at the spear tip of a generation of young people with developmental disabilities who were about to flood a system woefully unprepared to help them with even the most basic services, let alone support them enough to thrive.
She wrestled with the decision about the next step in her career. “For a long time, autism was so close to home, and maybe too close to home,” she says.
But eventually she decided her calling was there.
There are about 7.4 million people with developmental disabilities in the United States, and about $65 billion of federal and state funding goes to support them. Yet only 17% of people with developmental disabilities are able to access long-term support services. Many have little choice when it comes to deciding who will provide them services or what services they can access.
Federal regulations require local school districts to provide educational services through the age of 21, Schreiber notes. But when people with developmental disabilities reach adulthood, the support — which isn’t perfect to begin with — fades away. There are 5 million adults with developmental disabilities, who have had varying but usually low levels of access to government-run programs. A failure to build comprehensive services with measurable outcomes into community-based care means that 71% of adults with developmental disabilities live in their parents’ homes, 81% are unemployed, and the majority experience isolation and a lack of opportunity, according to the National Core Indicators, a voluntary effort by public developmental disabilities service agencies to measure and track their own performance.
This fragmented system depends on families providing an estimated $470 million worth of unpaid care, according to the National Academy for State Health Policy. Many parents of people with autism and other developmental disabilities live in fear of what will happen after they’re gone.
“It has been deeply motivating, just learning the ins and outs of the disability movement,” says Schreiber. “This is a huge, awful, glaring problem. The amount of unfairness and injustice that exists — even I had this concept that the government supports people with disabilities. That’s simply not true.”
The Novel Approach
Having decided to return to the United States to develop a social enterprise for adults with developmental disabilities, Schreiber applied to programs at Stanford and the University of California, Berkeley, because both were near Yosemite. (She is a nationally recognized rock climber.) She chose Stanford because of the array of resources provided by the Center for Social Innovation and the entrepreneurial courses, and because she knew she’d meet fellow students with equally audacious goals.
At Stanford, she was an Arbuckle Fellow, part of a coaching program that was instrumental in developing the skills she needed to build her company’s team, which in turn would help the developmentally disabled find their voices and advocate for themselves. She also took part in Lean Launchpad, a course for budding entrepreneurs taught by renowned startup leader Steve Blank. There, a team of students passionate about serving the market of developmentally disabled people came together and interviewed more than 100 potential users and stakeholders over 10 weeks.
Gradually, the plan for NeuroNav became clearer. In spring 2020, Schreiber won a Social Entrepreneurship Fellowship from Stanford GSB’s Center for Social Innovation, providing $110,000 in funding as well as other support to get the startup off the ground. NeuroNav’s business model will get a boost from a long-awaited change in California’s Self-Determination Program, which is designed to give developmentally disabled people more choices in the use of its services. NeuroNav is launching in California, where Self-Determination will be fully available in 2021.
NeuroNav helps individuals customize their budget to their goals. The company starts by identifying strengths, assets, and aspirations for the person in the context of their family and social environment. “We bring in a core circle of support,” Schreiber says. “That results in a profile of the individual. What do people love and admire about them? What are their hopes for the future?”
This culminates in a five-year plan to access services that support each individual’s goals.
NeuroNav’s team uses software and a database of options to create a tailored plan. For example, someone with autism might take a pottery class, swim at the YMCA, and take part in a job-training program. Case managers then approve the plan and allocate the budget required. The company’s revenue — it’s already working with 10 families — comes from a combination of private pay and Medicaid reimbursements. NeuroNav had a breakthrough this summer when it received a $25,000 government contract to train private facilitators who can provide individualized services.
One of the keys to success will be creating positive relationships with case managers, community service providers, and families. “The autism world is unusually tight knit,” Schreiber says.
“There are wonderful people who are deeply entrenched and really believe in the change in this community,” she says. “My hope is to build, together, a new bridge to a more inclusive reality for neurodivergent adults.”
Schreiber is the middle of three children, the daughter of a doctor and a technology salesperson. She went to the University of Virginia, expecting to become a doctor. She was an EMT in college and planned to work for Doctors Without Borders.
But college played the role it was supposed to: She fell in love with Africa during a class and felt drawn to social justice.“What I learned about myself was that I was more positioned to direct organizations and work on strategy,” she says. “How do you take the resources of business and apply that to really hairy social problems?”
For three years, she worked at Bloomberg News as a financial journalist. During a press interview, the CEO of Zola Electric hired her to be his chief of staff. She also ran the marketing department at Zola and asked for, and got, time in product development. When she left, the company had more than 1 million customers in five countries.
“I learned the power of action,” Schreiber says. “Whenever I took over a project, I just tried a ton of experiments. Experimental rigor and action always puts you in a better intellectual position to solve a problem.”
She also learned a few keys to balancing revenue generation and social mission. One is the depth and honesty of the conversations entrepreneurs and their teams have around the conflicts that arise. The other is a continuing connection with customers, so that the company is meeting their needs first.
Schreiber’s most important lesson has been to recognize the value of respect. That includes the respect she shows her brother, who is now living in a new home, connected with his community, and doing much better, and the respect she is building NeuroNav to embody.
“We’re really building a tech-enabled service that can walk with people along the lifespan,” she says. “Whatever their disability, we want to hear their voice.”
— Elizabeth MacBride