Get ready to Rock Your Socks! World Down Syndrome Day is here, March 21st, which means it’s time to dig through your sock drawer and get out the craziest pair (or mismatched pair) or socks you can find to support Down Syndrome Awareness. Why crazy socks? The point is to spark exactly that question! When someone asks you why you are wearing crazy socks, it is your chance to make an impact and promote awareness. Down Syndrome Awareness has increased with shows like “Born This Way” soon to start its 3rd season and major retailers hiring models with Down Syndrome including Nordstrom, Target, and OshKosh B’gosh. We can’t leave out advocate and model, Madeline Stuart, with over 600,000 social media followers, blazing the way as the world’s first professional model with Down Syndrome. However, everyone’s help is still needed to raise awareness and promote inclusion for individuals with Down Syndrome. If you aren’t sure what to say, keep reading for Down Syndrome facts you can use to explain what is Down Syndrome and why awareness is so important.
In the US, there are over 400,000 individuals with Down Syndrome and approximately 6,000 children with Down Syndrome born each year according to the Down Syndrome Association, Inland Empire. The National Down Syndrome Society confirms that what causes Down Syndrome is essentially unknown with maternal age being the only risk factor associated with higher diagnosis. Also known as Trisomy 21, Down Syndrome is when a person has 3 copies of Chromosome 21 instead of the usual 2 copies in some or all cells in the body. The extra chromosome leads to developmental changes that cause a range of delays in cognitive/intellectual, language, and motor development and is also linked to higher prevalence of certain medical conditions such as heart abnormalities and Alzheimer’s.
It is important to remember that actual developmental effects or symptoms of Down Syndrome are different for each individual. Many individuals are able to graduate high school, have full careers, and live independently with little to no assistance. Others require a range of supports and services throughout their life up to 24/7 care due to the severity of delays or associated medical conditions. Regardless of severity of delays or medical conditions Down Syndrome causes, people still have the same wants and desires as everyone else: community inclusion, meaningful relationships, love, recognition for talents, independence, dignity, respect, and to live an overall meaningful life. With the right services and supports, all of this is possible.
Currently, services and supports available to individuals with Down Syndrome vary widely state by state. In California, we are fortunate to have the Lanterman Act, which entitles individuals with developmental disabilities to certain services and supports. In other states, individuals often face long waiting lists to receive even basic assistance. Through the Medicaid Waiver program, services and supports provided by states in home and community based settings to individuals with developmental disabilities receive uncapped, matching funding from the federal government.
Proposed changes to switch to Block Grants may jeopardize the amount of funding available for states to continue funding existing Medicaid services (known as Medi-Cal in California). Block Grants would mean each state would receive a fixed amount of money from the federal government to fund all Medicaid programs including those for individuals with Down Syndrome and other developmental disabilities. Anything above the fixed amount would have to be 100% funded by the state. This not only places a spending cap on previous, unlimited matching funding for developmental disability service programs, but also places different Medicaid funded programs in each state (i.e. developmental disability services, low income benefits, geriatric benefits, etc) in competition with each other to try to get more of their state’s block of funding allocated to serve their population.
If funding is limited, this can lead to cuts in services and/or longer waiting lists for individuals with Down Syndrome and other developmental disabilities. 24 Hour Home Care currently provides services to thousands of individuals with Down Syndrome or other developmental disabilities so we have seen firsthand, the life changing impact the right services can have an individual’s life. Now more than ever, we need to raise awareness about Down Syndrome to help protect these much needed services and supports.
So are you ready to Rock Your Socks with us for World Down Syndrome Awareness Day? Don’t forget to share your photos on social media with #LOTSOFSOCKS and #24HrHomeCare. Remember, the crazier the better. The goal is to start as many conversations about Down Syndrome as possible! If you are like me and find that your sock drawer is full of only boring shades of white, brown, and black, consider purchasing a pair of John’s Crazy Socks co-founded by John, who has Down Syndrome, and his father. Let’s get out there and spread awareness!