On our blog this week, we want to talk about Down Syndrome. Our ultimate goal with our One Less Worry program is to help those with disabilities, and of course, their families, receive all the government benefits they can. One disability that has been receiving more attention lately is Down Syndrome. It is an incurable condition, which means that it has life-long implications. Most importantly, it means that a child with Down Syndrome will need a care-taker for life. With modern advancement in medical technology, people with Down syndrome have a life expectancy of 60 years, which is amazing, considering that just about 3 decades ago, the life expectancy was a mere 25. Let’s get started with some basic facts.
What causes Down syndrome? It was surprisingly to learn that until this day, we still don’t know what causes Down syndrome. To be more specific, it is known that people with Down syndrome has an extra copy of chromosome 21, which affects development. We also know that most of the time, the extra copy of the gene is due to a faulty sperm or egg development (about 90% of the time, referred to as trisomy). Other times, the cause is due to a fusing between genes 21 and 14 (about 10% of the time, referred to a translocation).
While the increase of life expectancy has increased dramatically, there is a negative side-effect: being that the parents of one with Down syndrome is no longer able to care for the person their entire lives, as many people with Down syndrome now have long lives, and outlive their parents. This is where financial planning comes in.
One fact to note is that there is no behavioral activity or environmental factor that changes the occurrence of Down syndrome. It’s completely up to chance, and whether or not the parents exercise regularly, eat healthy, or abstain from smoking does not affect the probably of having a baby with Down syndrome. Down Syndrome has an occurrence rate of about 0.1% or in other words, 1 per 1000 babies born have Down syndrome.
What are the effects of Down Syndrome? One problem that families of those with Down syndrome may face is the fact that in addition to the effect of Down syndrome, there is an increased chance to develop other health problems. For example, up to 50% of adults are at risk of developing epileptic seizures. Up to 10% develop autism. Of those with Down syndrome who reach age 60, up to 70% develop Alzheimer disease. Congenital heart disease, occurs in up to 40% of newborns, which is a staggering figure.
This doesn’t even account for the effects of Down syndrome itself. The most concerning of which is the affect on IQ. Young adults with Down syndrome have an average IQ of 50. This is comparable to a child around the age of 9.
How is the family affected? After doing some basic research, it’s quite clear to us that the families of those who are affected by Down syndrome have a lot of challenges in their lives. Perhaps the biggest challenge is what happens to the person after their parents pass away. As mentioned previously, the great news is that life expectancy of those with Down syndrome goes into the 60s, and many even live to their 70s. However, at this point in their lives the question becomes, who will take care of them? When they are children, their families are able to help, but what happens when the parents pass away?
This is where our One Less Worry program can help. It’s our dream to see that every person gets all the benefits they deserve from our government. This could mean a variety of benefits, including the disability tax credit, or the registered disability savings plan. From the provincial government, one could qualify for the person with disabilities benefit.
Additionally, we are familiar with many charities in Canada. As an example, a great charity which helps those with Down syndrome is L’Arche. Click here to check out L’Arche Canada. They are an amazing charity which has affected thousands upon thousands of lives.
Let the One less Worry program be an advocate for you and your family!
Howard Reisner (2013). Essentials of Rubin's Pathology. Lippincott Williams & Wilkins. pp. 129–131. ISBN 978-1-4511-8132-6. Archived from the original on 2017-01-23.