Marilyn Long gives some medication to her brother, Jeff Malanoski, during breakfast in 2014. Long and her husband, Mike, far left, take care of Jeff, who was born with Down syndrome and developed Alzheimer’s disease. (Chris Walker/Chicago Tribune/TNS)
Few people with Down syndrome have access to doctors specializing in the chromosomal disorder, but a new effort is underway to ensure that physicians nationwide know how to care for this population.
An initiative launching this week offers a free two-hour training course for health care professionals on treating adults with Down syndrome. The online course qualifies for continuing medical education credits, which doctors often need to maintain their licenses.
The training program is part of a broader information hub called CARE Down Syndrome developed by the National Down Syndrome Society, which features resources on everything from women’s health and weight management to Alzheimer’s disease as they relate to individuals with Down syndrome.
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“We created CARE Down Syndrome to close critical gaps in care for adults with Down syndrome,” said Kandi Pickard, president and CEO of the National Down Syndrome Society. “This initiative empowers health care professionals with the confidence, knowledge and resources they need to deliver enhanced, more personalized care.”
Only 5% of adults with Down syndrome have access to specialty clinics for those with the developmental disability, the nonprofit indicated, and doctors often receive minimal training in medical school on the condition.
The National Down Syndrome Society said it worked with more than 40 national experts to create CARE Down Syndrome. The group indicated that the new course and all of the materials that are part of the initiative were peer reviewed by experts and endorsed by the Down Syndrome Medical Interest Group-USA and the American Academy of Developmental Medicine & Dentistry.
“Too often, primary care providers are asked to meet the complex needs of adults with Down syndrome without having access to the specialized training or resources needed to best serve this population,” said Mike Mussallem of the The Linda and Mike Mussallem Foundation, which provided support for the new resource. “CARE Down Syndrome is tackling this challenge head on by providing accessible tools and educational resources based on the expertise of leaders in this area.”
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