Down Syndrome and Health Disparities

Down Syndrome and Health Disparities

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.

9 thoughts on “Down Syndrome and Health Disparities

  1. I thought that looking at Down Syndrome as a health disparity, and also considering the physical, social, and economic aspects that affect this disability was important, especially in today’s society.

    I recently had the opportunity to talk to a NeoNatal Nurse Practitioner about her month long experiencing in Saudi Arabia where she was commissioned to improve the health care of the community hospital, along with several other health care providers. One aspect of her trip that shocked me was specifically about babies born with trisomy 21. She said that because women aren’t allowed to date much, if at all, in Saudi Arabia, there is a lot of intermarrying within families and genetic mutations that develop when kids are born as a result. Down Syndrome babies in Saudi Arabia are designated as “hopeless” and upon birth are sent to a ward where their fate – death – has already been decided for them by the resources and knowledge within the hospital. It made me incredibly sad and angry to know that innocent babies were not even being given a second look because of the perpetuating disparity through Saudi culture and lack of resources.

    Although the United States is, comparably, doing better in the treatment and care of Down Syndrome patients, there is still a lot of work to be done, as noted. We can begin by simply raising more awareness for Down Syndrome, and encouraging more providers to further educate themselves on wholistic care for these patients.

  2. From learning more specific cases about society, health disparity seems to have a pattern of boiling down to one thing: perception. Humans hear about one disease, syndrome, or illness and immediately they think it is the worst thing to happen. Instead of trying to find the best, vigorous case to fight against it, many will just give up. A very well-known example is autism. Autism, alongside Down Syndrome, has always put a bad cloud over people. As a result health disparity increases exponentially. Perception plays a key role in fighting health problems. Had the PT’s perception been a little bit different the side effects of the stroke could have been less extreme. Had he had a worse perception the side effects could have been worse. Perception of the provider shapes all treatments, but most importantly perception of the patient shapes getting better.

  3. I’m really glad you chose to write about down syndrome because patients with any mental disabilities are generally subject to health disparities. Part of this, like you mentioned, is due to a lack of communication or understanding with neurodiverse people. Unfortunately, many able-bodied people are afraid or uncomfortable working with neurodiverse individuals. As a result, they often do not get the care and attention they deserve. So I definitely agree the SEM model applies to this. The first step to improving this situation, in my eyes, starts with each one of us changing our perception of people with mental disabilities. If we take the time to interact with these people, you may recognize the biases or misconceptions you help about them that can impede the care they receive. On a larger scale, I agree that education in schools and communities about down syndrome will help bring light to the health disparities they experience.

  4. I like how you used Down Syndrome as an example of a health disparity. I have a close friend with Down Syndrome and used to work in at a tennis camp for kids with the disability. Coaching the kids has shown me how much value they bring to the world and how important it is that they receive quality health care. The camp I worked with was great because it improved the physical health of the kids and allowed students like me to learn how to work with kids with mental disabilities. They do communicate differently and I can see how this could come into play in health care. You make a good point that some people are uncomfortable working with individuals with disabilities. I think it is important that health care professionals educate themselves and spend time getting to know people with mental disabilities, so that they will have fewer misconceptions and will be able to provide the best care possible.

  5. Thank you for sharing your story with us! I enjoyed reading about your personal experiences and how they’re connected to what we’re learning on class. I believe down syndrome and any other mental or physical disability relates to the SEM model. As someone who volunteered with special needs students throughout high school, I was well aware of the large amounts of time, money, equipment, and care needed to provide for people with special needs. Fortunately, my school had an amazing program that gave students with mental disabilities a wide variety of opportunities such as special after school sports programs and theatre and music programs. Like you, I often wondered how the lives of the students would be different if they didn’t live in a community that adjusted to their needs and gave them a proper education. Many of the students that attended my high school’s special needs program often lived far away and had to pay a large amount of money to join the program. This made me wonder about the students who couldn’t afford the program or couldn’t find a way to travel to my school. I believe that there is a great health disparity relating to people with mental illnesses. The health of this population is definitely dependant on whether or not the resources are available.
    To improve this, I believe we need to raise awareness about various mental disabilities. This will show communities that people with these disabilities are members of the community and have the ability to contribute as much as anyone else. Once awareness is raised, more programs can be created to give people with disabilities opportunities to connect and participate in a variety of activities together. If there are more programs, a larger population will be taken care of at a smaller cost.

  6. It is so important that you brought this up! From what we read and learned in class I never connected health disparities with born diseases and the effect of others perspectives on those diseases.
    I also want to point out that the location has probably the biggest effect on health disparities. for example, babies born with down syndrome in the united states would be given a childhood filled with stimulation and hope, while in the case of your story they were doomed from birth.
    The more educated a society is the more likely individuals are to understand innate diseases that are not preventable. It is also important to note that health disparities differ from one person’s perspective to the next. Just because one person in a culture has an idea on how to treat an individual does not mean that the whole culture has the same one, that would be creating a bias.

  7. So sorry to hear about your uncle’s difficulties but I appreciate your insightful analysis and pointed questions that raise helpful discussion and awareness of health disparities that are linked with genetic disorders like Down Syndrome.

  8. In class we talked a lot about health disparities between people of different religions, races, and ethnicities, but we did not talk about health disparities regarding mental abilities. I think you brought up a good point that many people do not think about the physical challenges faced by people with mental disabilities. My piano teacher from high school has a son with Down Syndrome and I spent a lot of time playing with him, so I understand some of the challenges he faced. I think it is great that you felt comfortable sharing such a personal story here but it really helped show additional disparities not discussed in class.

  9. I believe that Down Syndrome as well as other intellectual disabilities are not treated as seriously as other disabilities. There is a huge health disparity to people with mental illnesses. I recently looked into rehabilitation services and it came to my attention that many of these places are not adequate and do not help people in the way they should. Similarly to you uncle, I believe that the quality of care is correlated to money and this is simply not fair. I do not understand why some people are not given the care that they need and why the America health care plan does not provide equal coverage to all citizens. This inequality is extremely prevalent in mental health cases. It is so important that everyone receives quality health care and although I do believe that the ACA has improved this I think we have a long way to go and I think we should use other countries as examples.

    I believe the comment about perception is very application to mental health disabilities because in America especially people do not see mental health as important as physical health, when really, in my opinion it is more important. If we can change our countries perception of mental health I believe this will lead policies regarding mental health care to change for the better.

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