As the parent of an adult daughter with intellectual/developmental disabilities, I can attest firsthand to the challenges of coordinating the medical care of an individual with a disability. The complexity of underlying chronic physical, emotional, and behavioral issues that so often accompany genetic conditions such as Down syndrome is overwhelming at times, making coordination seem impossible. In August 2009 the University of Arkansas for Medical Sciences (UAMS), under the leadership of Dr. Kent McKelvey and Dr. Bradley Schaefer, opened Arkansas’s first genetics clinic focusing on providing specialty medical care to individuals living with numerous genetic syndromes, one of which is Down syndrome. In October 2020 Dr. Kent McKelvey, working with a group of 13 researchers, doctors, and social workers from all geographic areas of the country, published the first evidence-based medical care guidelines for adults living with Down syndrome. These guidelines, first published in the Journal of the American Medical Association (JAMA), are available for free through the Global Down Syndrome Foundation.
To access these guidelines and other useful resources, visit https://www.globaldownsyndrome.org/global-adult-guidelines/ .
To read the JAMA article, visit https://jamanetwork.com/journals/jama/fullarticle/2771907?utm_source=undefined&utm_campaign=content-shareicons&utm_content=article_engagement&utm_medium=social&utm_term=110220
I plan to share these guidelines with my daughter’s doctor. I encourage you to share as well.
Jacqueline Gorton is an advocate at Disability Rights Arkansas. Email her at jgorton@disabilityrightsar.org.
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