The first time I had started to think about the disparities in health was back in 8th grade. My uncle Philip, who lives with my family, had just suffered a stroke that would eventually leave him paralyzed on one side of his body but my family and I didn’t know that at the time. Anyways, after the stroke, even though he was paralyzed, the doctors were completely hopeful that he would regain use of the right side of his body because it was not as severe as many other cases that they had seen make full recoveries. Following the stroke, my family had no other option but to place him in a nursing home that we would later find out was not working as hard as they should have been during his physical therapy. The physical therapy he was receiving wasn’t aggressive enough to make any progress because none of the therapists knew how to deal with someone who did not talk and could not understand them. He seemed to be getting worse, not better. Consequently, Philip did not receive the care he needed and we removed him from the nursing home. We brought him home and he’s been back with us since. I have always wondered if maybe we could have afforded a better nursing home, he would have received more attentive physical therapists and would be walking today? Or maybe if we had been able to pay for a private physical therapists to care for him, he’d at least be able to use his right arm? But those questions did not bother me that much because the real question on my mind was, if he didn’t have down syndrome would he be paralyzed today? If he could communicate like your average person, would the nursing home have been able to provide him with the care he needed? There is no confirming my speculations, but learning about health disparity in class reminded me of these questions that raced my mind when I was 14 years old before I even knew what health disparity was.
People with down syndrome have a shorter life expectancy than the rest of the general population. Even though kids with down syndrome are prone to many other life altering complications with their health, (including heart defects, leukemia, and dementia) I feel like their life expectancy could be related to the SEM Model. In 1997, a study showed that the life expectancy of white individuals with down syndrome was 50, while for blacks and other races it was 25 and younger. This is alarming in itself and that’s why it made me wonder if social and economic status played a part in the life expectancy of people with down syndrome. Caring for someone with down syndrome can be very expensive in the long run. If a family has more money to put towards a child with down syndrome does that child end up better off than a family who doesn’t? There is a shortage of health care professionals that are trained and willing to care for patients with intellectual disabilities. Thus, people with down syndrome may receive less routine preventive care services such as screenings and even just regular check ups. However, if a family has more time, money, and resources to put towards the care of someone with downs, does their life expectancy increase? This is just speculation on my part but I say yes all of these factors play a role in life expectancy. On the relationship level, if there is someone to spend an adequate amount of time with a child with downs they may be better taken care of which could play a huge role in their life expectancies. It is important for them to be surrounded by love and kinship so if that is absent, it could take a huge toll on health. On the community level, the institutions and programs set up for them could play a role in their health as well. People with downs are more likely to be overweight and this could lead to many other health issues. However, if there were more activities set up for them on the community level, would that obesity level decrease? For some, including my uncle, the only actual physical activity they could participate in was the special olympics every once in a while. That is not nearly enough to live a healthy life. On the societal level, could there be more done towards finding a way to keep the life expectancy of people with downs going up? Like maybe, creating even more awareness about the health risks that come with having down syndrome. Most people do not understand that by just having down syndrome, a person is way more susceptible to many diseases. When society thinks of down syndrome, they think of the mental disability part. However, it is not rare to have a kid with down syndrome battle leukemia or have a weak heart as my uncle does.
I can definitely say that progress has been made because today an individual with down syndrome is expected to live well into their 60s and 70s! (My uncle will turn 59 in February!!) I feel like at this point I am rambling so just to wrap up, do you guys think that the SEM model and what we learned about health disparities can relate to down syndrome and other disabilities that aren’t really preventative? Down syndrome may not be preventative but some of the things that comes with down syndrome could be prevented in my opinion.