In summary

With emergency preparedness a priority and people with disabilities moving out of institutions, our story shows gaps in protecting vulnerable Californians.

By Diana Pastora Carson, Special to CalMatters

Diana Pastora Carson is a kindergarten teacher in the Chula Vista Elementary School District and a San Diego State University Disability Studies Lecturer, Diana@abilityawareness.com

Recently, my family had a scare. We had a fire threaten our property, our home in the mountains of Jamul, an unincorporated town in San Diego County. 

Contrary to most assumptions, potentially losing our houses on the property was not the actual scare.  The scare was that my brother, Joaquin, who experiences severe autism and epilepsy, had no place to go.  

With people with disabilities moving out of institutions and Gov. Gavin Newsom prioritizing emergency preparedness, our story shows that huge gaps remain in protecting our most vulnerable Californians.

Joaquin was confined to an institution for 15 years. We fought a legal battle for three years to get him out. We have created a customized apartment for him on our property, which is “Joaquinified” to meet his specific medical and behavioral needs. Always wearing his backpack, ball cap and bright smile, Joaquin is our world. He loves doing community service every day. He is successful in this environment and has a good life.

Diana Pastora Carson’s brother, Joaquin, lives in a customized apartment.   Photo courtesy of Diana Pastora Carson

At the risk of his dignity, and with his permission (Joaquin gave enthusiastic support for the submission of this article by emphatically typing on his communication board, “Y-E-S”), I am publicly sharing our story to show why it is critical to develop safety plans for people with disabilities who have significant needs.

Although the fire was yards from my house, I was, without question, more concerned about Joaquin’s home. But even more frightening, as we evacuated, was the realization that we had nowhere to go with Joaquin.

Friends jumped into action trying to help us find a place, to no avail. The Red Cross tried to help, but there was no way we could go to an evacuation site with Joaquin. He is likely to have significant behavioral challenges because of the distress. 

What we needed was a sturdy, private place with no breakable windows, and no carpeting for fecal and food messes to destroy. No things that could be knocked over or thrown, such as toilet tank lids and pictures on walls. No crowds. No judging eyes amidst the potential of screams, head banging, stripping naked, and pounding on walls and windows. No one who could be hurt as a result. 

In the few hours that we were evacuated while CalFire was working to save our homes, I found myself feeling overwhelmed with fear. Had we really come this far after years of struggle and ensuing victory, only to find ourselves with nowhere to go? 

For someone with significant communication and behavior needs such as Joaquin, even a few hours seemed like an eternity. Where could we take him to use the restroom? What if he had a bowel movement, which typically gets on his hands and body and requires a shower? Where could we take him safely? 

On top of all those considerations, what about the Covid-19 restrictions and his inability to wear a mask? Surely there had to be some place that would allow Joaquin’s support staff and family to continue to care for him in a safe and secure environment. Nothing. We found nothing. 

It seems that in spite of the best intentions, places do not just open up for someone like Joaquin. Policies are not overridden to accommodate the unique needs of people like Joaquin in times of crisis. We have no safety net in place. And we know we are not alone in the quest for person-centered crisis support. This is the scary part.

The good news is we were able to return home by late afternoon, where our neighbors, family and staff were getting Joaquin situated with his generator for electricity and a shower.  We nailed Plan A. Now it’s time to create a Plan B.

With emergency preparedness being a priority of our governor, we need to understand that responses to crises do not come in a one size fits all first aid backpack. Plan B must include a collaborative, individualized approach that considers the most significant needs of members of our communities.  

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