A Letter to Families of Children and Adults with Intellectual and Developmental Disabilities

March 19, 2020

Dear Arc of California Community,

I am writing to you as President of the Board of Directors of The Arc California, but more importantly I’m writing to you as a parent of a child with a disability. I want to reach out and offer support and encouragement at a time when we are experiencing an upheaval in our daily lives caused by the COVID-19 pandemic. As a parent of an adult son with an intellectual disability, I know how uneasy we are as we try to cope with something that is beyond our control and for which we had no time to prepare. Children may not be receiving early intervention or therapy services as a result of many schools now shuttered, and adults may also be with their family with the closure of adult day programs. Your employment may be in jeopardy if your employer has been affected by the economic slow-down, or you may be trying to work from home. This comes in the midst of an unsettled political climate and a presidential election year, and with conflicting advice from experts contributing to our anxiety.

All of these things create considerable uncertainty as we try to focus on maintaining normal routines, especially for our family member with an intellectual disability. This week my 38-year-old son, whose day program has closed, learned new words: hand sanitizer and virus. My best efforts to explain the importance of these terms were, I’m afraid, not persuasive. Learning to “elbow bump” instead of the usual high-five was not acceptable to him, and he told me in no uncertain terms, “No more virus”. We are all adjusting to an unfamiliar situation and supporting our loved ones as their familiar daily activities are changed in ways that are profoundly impactful. It definitely requires more creativity and patience!

New directives to stay at home along with the closure of the businesses we frequent and limited supply of needed sanitation and food items add to the difficulty. Inconvenient and stressful as it may be, these short-term sacrifices are necessary and will help to protect the health and welfare of our family, friends, and neighbors, including our family members who have additional vulnerability.

Many changes are being rolled out almost daily, from our educational institutions to our regional centers, health care facilities, and other systems that we rely on. These changes are intended to reduce the impact and ensure continuing availability of essential services. I want to assure you that The Arc of California, in partnership with other community advocates, is in the forefront of efforts to ensure that the needs of people with intellectual and developmental disabilities and their families, as well as the organizations that provide critical services, are not forgotten. We are committed to advocate on your behalf and preserve vital services.

As the days go by, I hope the changes will become more routine and some of the concern will gradually subside. Please take time for yourself, get some fresh air every day if weather permits, and find activities for your family to enjoy together. Please don’t hesitate to reach out to organizations in your local community who can be helpful if you need additional resources. The Arc California will continue to monitor the service system and stands ready to be your voice when needed. We hope for your continued good health and well-being until we regain some stability and a return to better days.

Sincerely,

Betsy Katz
President of the Board of Directors of The Arc California

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