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I moved to Roseville, California from Michigan with my sister and mom about eight years ago. My sister is 46 years old and has developmental disabilities. She is a happy, hard-working woman with a determination to carry her own weight in our family. Before COVID-19, my sister worked 30-40 hours/week for seven years. She loved her job, was a very dependable worker and so they loved her too.
Since the pandemic started, my sister has been dealing with a major healthcare issue that caused her constant pain for 18 months. My family and I have been struggling to get proper medical care for my sister. She has been seen by two different hospitals and has gone through eight months of appointments and tests. Both providers finally concluded that she does have a serious condition that requires a surgical procedure to remedy the problem. We were given over five different surgery dates and these dates continued to be pushed out due to COVID and hospital capacity. I could not help but wonder if my sister’s case was being delayed because she is a person with a disability, or a person of color, or her healthcare coverage, or because of COVID.
My desire is for the issues of healthcare for people with disabilities to be addressed and resolved once and for all. It has been overwhelmingly frustrating. Does living on SSI and having MediCAL or Medicaid services bias the medical community? Does having a disability limit access to medical professionals, or treatment?
My sister finally received her surgery about three weeks ago and is doing well, thank goodness. She is already asking when she can go back to work! And that brings up the next problem of returning to her (sub-minimum wage) job, which she misses. Transition plans for negotiating equal pay for many providers are in process, I know. However, employment hours will probably be reduced. My next concern for my sister’s emotional recovery is whether or not her job changes. I am grateful for the commitment so many are making for a smooth transition for all those affected by the elimination of sub-minimum wage jobs.
We are The Arc Family!
We are delighted to share a series of stories from The Arc of California families. It has been, and still is, the mission of The Arc of California to be a voice for families of children with developmental disabilities. The Arc team is working on behalf of families with the Legislature and Administration to develop solutions that will address the most pressing challenges facing the disability community. We would love to hear your story!