By KENDRA SITTON | Uptown News
Ken Barnes se convirtió en director ejecutivo de Options 4 All, una organización sin fines de lucro que atiende a adultos con discapacidades del desarrollo, el 3 de febrero. En cuestión de semanas, pasó de reunirse con empleados de la organización en todo el estado a formar un grupo de trabajo interno sobre coronavirus. En la sexta semana de su mandato, se emitió la orden de quedarse en casa, y él estaba preparado.
“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.
Para apoyar al personal, la organización también ha establecido un programa de asesoramiento anónimo para los empleados. Con miembros del personal todavía empleados, la organización ha podido seguir sirviendo a los 1.400 adultos discapacitados en su órbita.
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.”
Al llevar a las personas con autismo, síndrome de Down, parálisis cerebral y otras condiciones a la biblioteca, al parque, a Starbucks ya las tiendas, Barnes dijo que se logran dos cosas. En primer lugar, a los adultos con discapacidad se les enseña cómo interactuar y, en segundo lugar, otras personas desaprenden el estigma que rodea a las personas con discapacidad.
“[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.
Una pequeña parte de su trabajo es ayudar a cuidar a personas discapacitadas que viven de forma independiente sin el apoyo de familiares o amigos. Esto puede significar pagar facturas, administrar su hogar y comprar alimentos.
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.
El trabajo es especialmente significativo durante la pandemia porque algunos estados, incluidos Washington y Alabama, han colocado a los adultos con discapacidades intelectuales como una prioridad menor para los tratamientos que salvan vidas en sus planes de preparación para desastres. Los defensores temen que a algunos de los 7 millones de estadounidenses con discapacidad intelectual se les nieguen ventiladores y otros tratamientos que salvan vidas si hubiera escasez.
“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.
— Se puede contactar a la editora Kendra Sitton en [email protected].
