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I am proud mom to Ben who is a lovely light in my life. I am fortunate to serve on the Board of Directors of the ARC of California and a board member of our local Fresno/Madera ARC chapter. My son Ben has intellectual disabilities and lives with his roommate in an apartment. Ben has a scaffold of support staff that include independent living services, in home health, and the Arc Day program. He has long been involved with Break the Barriers, a local dance and gymnastic organization, as well as Kiwanis Aktion club, Bible study, and an art workshop.
When COVID-19 hit, all that stopped. Ben is quite social, and his friends and family mean a lot to him and his wellbeing. We work hard to provide a healthy, engaged, meaningful life for him, where he not only is active with his peers, but gives back to his community. These past couple of years, all that has changed. It has been difficult and there has been too much isolation. Zoom, phone calls and homework packets are inadequate replacement for human connection. With too much down time and unsupervised eating, Ben has gained weight and his blood pressure has risen.
Separation from friends because of program closures and family because of quarantine, has left Ben often lonely and bored. We have been blessed with staff who have hung in there as best they can through months of quarantines and the unknown. Ben’s usually well-structured day designed to promote health, exercise, and a positive mental well-being has gone by the wayside. As time went by, other families and friends have stepped in to safely provide activities. It takes many hands, and we are all tired and wonder what the future holds. This level of engagement is not sustainable on a personal level. As an aging parent, it is daunting. I know that many of Ben’s peers do not have the level of support and opportunities that we are able to provide for him.
I am proud of our Arc chapter and the efforts to reopen at any possible level, even when it was necessary to close again, opening bit by bit. Arc is a leader among area nonprofit and consumer support agencies and looked to for guidance and best practice. It is not an easy role to play in our community and one not taken lightly. As Arc opens again there is hope of normalcy, but with program staff shortages it is difficult. New employees, when found, usually are at entry level and need training and experience to become competent and all that takes precious time and those who are willing seem to be in short supply. Often those once trained, leave for higher paying jobs, so the turnover and quality of programs can be compromised or extinguished completely.
We are still examining the recent past for lessons learned to smooth the path for a better way forward. All this experience once again teaches us where to put our funds and energy. We once again engage and advocate for our loved ones. We once again reach out to supporters and funding sources. It’s what families do. Families have always made that path, as in starting Arc all those years ago. I know we will come out better than ever.