Much of the care that is available in the United States for individuals with Down syndrome is aimed at children. It is, of course, quite important to provide young people with Down syndrome with quality care as quickly as possible after they are diagnosed. With that said, those individuals grow up to be adults, of course, and the care they have available to them as an adult often falls short of what should be provided. Sadly, they are sometimes still treated as though they are kids, and they aren’t able to get the care they deserve as a result. For a demonstration of the lacking care that is available to adults with Down syndrome, we can look at the case of Samantha Lesmeister. Samantha is an adult with Down syndrome who experienced a dramatic change in her mood and energy levels after suffering a fall and hitting her head. Previously able to speak in a limited manner, she was no longer speaking, and had withdrawn from activities that she normally enjoyed. 

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Going to a standard, general practice doctor offered no solutions. Lesmeister’s mother was not satisfied with the answer that there was nothing they could do about this change in her daughter’s condition, so she worked hard to find a better path forward. Through research, she was able to find a program at the University of Kansas that did specialize in caring for adults with Down syndrome. Fortunately, the facility where this program was offered was located relatively near to the Lesmeister’s home, so they were able to visit and get help directly from experts in this field. Ultimately, it was the help of the professionals who knew not to treat an adult with Down syndrome like a child that got Samantha on the right track. She has improved since that experience and her mood and attitude toward life gradually returned to what they were before. Not all adults with Down syndrome will be able to visit a clinic that has been designed for caring for them specifically. In the absence of such specialists, it would be a positive shift if more general practice doctors and nurses were trained in the care of people in this situation. Above all else, even when a person with Down syndrome has trouble communicating and can only offer a few words, they still need to feel heard. When a healthcare provider is willing to listen carefully and respect the patient as an individual, they can often communicate effectively what they are facing, so the right care can be provided. It is only with awareness and activism that more and more programs and services will be available to people with Down syndrome as they enter their adult years. Thanks to the care that is available to young people with Down syndrome, more and more of these individuals are able to live well into their adult years – which is great news, to be sure. Now, if the care they are offered as adults can catch up to what is provided for those kids, everyone will be better off. 

Sources:

Adults with Down syndrome face a health care system that often treats them as kids

Down Syndrome Medical Care Centers