World Down Syndrome Day 2025
This year’s World Down Syndrome Day campaign calls on all governments to “Improve our Support Systems”.
At first, this theme seemed quite daunting for me, an occupational therapist living in a country where financial and human resources are limited. A country where proper policies and frameworks are in place, but the execution thereof is often lacking.
And then I came across a study by De La Garza et al. (2023). They found that the most common concerns among the caregivers of adults with Down syndrome, were planning for future needs and for what happens when the caregivers are gone.
And with that, instantly, I was encouraged again. I was reminded that caregivers often face the burden of not only managing day-to-day care, but also planning for an uncertain future where they are no longer able to provide that care.
So it is time to ask ourselves: what policies, resources, and infrastructures can we develop to not only protect individuals with Down Syndrome, but to also provide support and relief to their caregivers? What kind of systems do we need to build in order to ensure that caregivers are not left with this looming anxiety? That they can have peace of mind that their loved ones with Down syndrome will continue to thrive, even when they can no longer provide care themselves.
And yes, there are numerous hurdles to achieving this, but let’s commit to creating a world where individuals with Down syndrome are supported, valued, and empowered. So that, in addition, their caregivers can have one less thing to worry about.
Reference:
De La Garza E, Scott A, Hillerstrom H, Hendrix J & Rubenstein E. (2024). Caregivers’ concerns and supports needed to care for adults with Down syndrome. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 196C:e32041. https://doi.org/10.1002/ajmg.c.32041.
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