By Felisa Strickland, ARC Representative, Board Member, and parent mentor for Alpha Resource Center of Santa Barbara.
I am a disability advocate, mother and full-time caregiver to my amazing daughter Lily who is 21 years old with Cerebral Palsy and autism. She is nonspeaking and mostly uses an AAC device to communicate. Lily is a bright light! She is smart, funny, and loving. She wins the hearts of all who know her. She also requires one-to-one support for most all daily living activities, needing constant supervision for safety and well-being. In typical times this support is administered by me; her team at school; and our friends and family. But when COVID-19 hit much of that support came to a screeching halt.
Our “day-to-day” became especially challenging, when what was supposed to be a few weeks turned into over 18 months of disruption to life as we knew it, which – let’s be clear – was already challenging! Suddenly, no bus rides to school; friends greeting you; or a routine to live by. And favorite lunch burritos with tapatio sauce were gone too! All these and more were replaced by uncertainty, isolation, stress and anxiety.
Both being high risk, we had no access to respite support or society. It was just us – Lily and me. Additional respite hours were offered, but there were no providers. No one could risk infection! We already struggle to get sufficient respite care to provide us with the necessary breaks, but we manage to maintain a happy, healthy relationship. But as the Pandemic went on I saw my happy girl get sad; depressed and withdrawn. We made the best of what resources we had: taking walks; car rides; engaging in zoom school activities: art; music; and virtual field trips. But all required support by me, and were often met with resistance, leading us both to exhaustion. Lily and I are used to spending a lot of time together and have an amazing bond as mother and daughter. It’s been just us since 2010 when we lost her father to Melanoma.
I am grateful every day for the loving relationship we have. It makes getting through the hard days easier. But as a parent and only caregiver, I worry about what the future for my daughter looks like when we already struggle to get needed supports. I feel that I need to live forever, as do many in my situation.
This Pandemic spotlights the importance of advocating NOW for Direct Support Professionals for the future! We need to pay living wages, offer benefits, in order to attract people into this profession who have the enthusiasm and heart required to do it well. There are many people that would love to help, but simply can’t afford to. Now that we are coming through to the other side of the pandemic we are seeing that there is no going back to “normal”. Normal wasn’t working anyway. Adequate professional support was an issue before the Pandemic and is even more pressing now. There are so many openings for support staff in nearly every area of services. I am driving Lily to school now because we don’t have bus drivers anymore. I don’t mind, but it was a highlight of her day that ended on March 13, 2020. Will it ever return?
I am grateful to have the opportunity to participate, serve, and advocate with other ARC families on the many pressing issues that affect individuals with disabilities and families like mine. It’s important work that must continue. Lives are depending on it!