By KENDRA SITTON | Uptown News
Ken Barnes became CEO of Options 4 All, a nonprofit serving developmentally disabled adults, on Feb. 3. Within weeks, he had shifted from meeting employees of the organization throughout the state to forming an internal coronavirus task force. In week six of his tenure, the stay-at-home order was issued – and he was prepared.
“Thursday, March 19, that afternoon we started rolling out [remote programming] and the governor issued the state order that night. The next day, we were ready because we’ve been planning for three weeks,” Barnes explained in a phone interview.
At this point, Barnes has spent more time working from home than he has spent working in the office. The organization’s 420 employees are also all working from home. While other nonprofits have struggled to keep their payroll, Options for All has actually hired seven people since the crisis began.
“The thing that I’m most excited about is that we’ve been able to keep our staff home. I didn’t want them to face the economic stress in the midst of it; there’s all kinds of stressors happening,” Barnes said.
To support staff, the organization has also set up an anonymous counseling program for employees. With staff members still employed, the organization has been able to keep serving the 1,400 disabled adults in its orbit.
The majority of the work Options for All does is community engagement. “We help them engage in society, so they can fully participate,” Barnes said. “This is a population that historically have been confined to their homes.”
By taking people with autism, Down syndrome, cerebral palsy and other conditions on outings to the library, park, Starbucks and stores, Barnes said two things are accomplished. First, disabled adults are taught how to interact and second, other people unlearn stigma surrounding disabled people.
“[Intellectually disabled] people are normal people just like them. They just are just neurologically diverse,” Barnes said.
Another effort Options for All has is supportive employment. Many of their clients are employed at grocery stores and healthcare centers and other essential jobs where they receive some coaching and guidance from the nonprofit staff so they can be as independent as possible.
A small portion of their work is helping care for disabled people living independently without family or friend support. This can mean paying bills, managing their household, and grocery shopping.
The last portion of their work is a film and media studies program with Joey Travolta, the older brother of actor John Travolta. People take classes and train to work in the film industry. Participants create commercials for local companies and recently released their first feature film, “Carol of the Bells.”
Each of these programs have been made remote so participants can continue receiving support while sheltering at home. “We didn’t want them to lose all of their daily habits and their daily routine that they rely upon,” Barnes said. “We’re gonna do everything we can to meet them where they are and continue to provide services.”
Barnes first got involved with Options for All in 2014 when a friend invited him to a fundraiser because she knew that Barnes grew up with a twin brother with cerebral palsy, although his brother died many years ago. After the fundraiser, Barnes began volunteering and within a few years was on the board of directors. Last year, the organization’s CEO of 27 years moved on. Barnes was living in Sacramento at the time after years of work in public affairs and management consulting.
“The board went out and did a search and I thought, gosh, it sounds crazy but I think I want to apply, but we will take a pay cut and have to move to a more expensive area in the state,” he said. He was selected and moved to San Diego for the new role.
The work is especially significant during the pandemic because some states, including Washington and Alabama, have placed intellectually disabled adults as a lower priority for lifesaving treatments in their disaster preparedness plans. Advocates worry that some of the 7 million intellectually disabled Americans would be denied ventilators and other life-saving treatment if there was a shortage.
“Those emergency precautions are basically saying that someone who has Down syndrome or someone who’s on the autism spectrum is less valuable than someone who’s not on the autism spectrum. It goes beyond cruel. It’s inhumane,” Barnes said passionately.
The potential situation reminds Barnes of his brother. “’Twin A, he’s got cerebral palsy so let him die. Twin B, he’s more valuable, so let him live,’” Barnes imagines a healthcare worker deciding.
Barnes does not believe triage should be based on someone’s interpretation of the value of someone’s life based on what they are capable of. Barnes is willing to advocate for clients if need be. Already, a sickened person in the program faced the “double barrier” of English being their family’s second language and being disabled after being diagnosed with COVID-19. A staff member called the family and the healthcare center to ensure the person was receiving proper care.
“I don’t think there’s anything more important than protecting the most vulnerable people in our society,” Barnes concluded.
— Editor Kendra Sitton can be reached at email@example.com.