Autism caregiving struggles were heightened during COVID-19

As the father of an adult son with severe autism, my family’s challenges have been great over the past two years. I imagine most parents and caregivers of children with autism and other disabilities have been in a similar situation during the pandemic.

Adequate, quality respite care from direct support professionals who assist people with disabilities in their everyday activities, coupled with limited public funding were challenges even before COVID-19. Given this workforce’s wage, training and credentialing limitations, it’s no surprise a workforce crisis exists.

We pay retail and restaurant staff higher pay than the professionals who care for our most vulnerable citizens. No worry occupies my mind more than: “Who will care for my son after I’m gone?” Without the peace of mind that he’ll live safely, comfortably and in a community that I know will care for his needs, I’ll continue to experience sleepless nights and wonder what his life will be like in the future.

During the first wave of COVID-19, my son’s group home experienced care shortages, limited — and at some points, total lack of — community outings and activities, and, yes, COVID-19 hit each resident. You can only imagine the fear that struck us parents. Given the increased risk of severe illness and fatality for people with disabilities, combined with the need for quarantine and our inability to just be at their side for comfort was one of the most challenging moments of my life — and I imagine his.

Timmy Kelly

Timmy is nonverbal. He has sensory challenges, limited comprehension of instructions and struggles with compliance measures. How would he understand all the changes to his routines, caretakers, daily activities and then, on top of all of it, his father or sister not able to be at his side to bring some context and familiarity to a world turned upside down?

As the crisis of the pandemic wanes, for which I am grateful beyond belief, I am reminded of how crucial good caregivers and community inclusion are to people with disabilities and their families. We have witnessed some encouraging shifts like increased awareness of this crisis by legislators and creation of a statewide task force.

These changes, in hand with engaging caregivers with sustainable wages, providing necessary training and advocating for credentialing changes, are all factors that impact the quality-of-care for people with autism and their families. And families depend on caregivers — they are stand-ins when we can’t be there.

Timmy deserves a quality of life that affords him the predictability of family, peers, support, and activities that just make him happy. When he’s happy, I am happy. It may seem basic, but it’s all I need to sleep at night.

George Kelly is a resident of Livingston County.

Originally posted by The Lansing State Journal.