Advocacy Plan
As people with Down syndrome age into their adulthood, many resources that they once had available to them prior to the age of eighteen will no longer exist. Adults with Down syndrome do not receive the same amount of care in many aspects of their lives as they do when they were children (Henderson, Lynch, Wilkinson, & Hunter, 2007). In addition to health care, pursuing education and employment can be difficult for people with Down syndrome past the age of eighteen; not only is it already difficult for people with Down syndrome to be recognized for their professional abilities and attain employment, it is further difficult for people with Down syndrome because of how the government is set up.
In its current state, the government still upholds outdated laws that make independent living or pursuing a career seemingly impossibly for people with Down syndrome if they did not want to risk their Medicaid benefits (“End Law Syndrome,” 2018). I have always known that life for people with Down syndrome in an ableist society would be ridden with impediments and hurdles, but I never realized to what degree. To be immobilized and unable to pursue education, career, or independence in order to retain healthcare as a person with Down syndrome—I feel disheartened just thinking about every person with Down syndrome who has ever been down that road. I do not think that people with Down syndrome should have to choose between their healthcare and their independence. I especially believe this because of the positive correlation between career satisfaction and life satisfaction (Hagmeier, Abele, & Goebel, 2017). I further suggest that this could be a contributing factor in the high amount of depression amongst the sample of adults with Down syndrome in Mallardo, Cuskelly, White, & Jobling’s study (2014).
This picture is a screenshot of the message I sent through the National Down Syndrome Association’s website to my local representative, in support of ending Law Syndrome and in support of the proposed legislation that will rightly benefit people with Down syndrome who want to pursue financial independence. I will continue to follow this legislation and encourage others to support the #EndLawSyndrome campaign as well. Everyone deserves freewill to pursue financial independence, and there should not be legislation in the way of that pursuit.
References:
End law syndrome. (2018). National Down Syndrome Society. Retrieved from https://www.lawsyndrome.org/#header
Hagmaier, T., Abele, A., Goebel, K. (2017). How do career and life satisfaction associate? Journal of Managerial Psychology, 33(2), 142-160. doi:10.1108/jmp-09-2017-0326
Henderson, A., Lynch, S., Wilkinson, S., Hunter, M. (2007). Adults with Down’s syndrome: the prevalence of complications and health care in the community. British Journal of General Practice, 57(534), 50-55.
Mallardo, M., Cuskelly, M., White, P., & Jobling, A. (2014). Mental health problems in adults with Down syndrome and their association with life circumstances. Journal of Mental Health Research in Intellectual Disabilities, 7(3), 229-245.
Servant Leadership
People living with Down syndrome face a lot of stigma from society, particularly surrounding what people with Down syndrome can and cannot do. For instance, many people have the misconception that people with Down syndrome cannot hold employment or are not capable of certain types of employment, whereas adults with Down syndrome are largely employed in positions that underutilize their skills (Kumin & Schoenbrodt, 2015). Moreover, employment opportunities should be broadened for people with Down syndrome and education in technology should become a part of the curriculum for students with Down syndrome (Kumin & Schoenbrodt, 2015). For people with Down syndrome, it is important for people without Down syndrome to realize that people with Down syndrome are fully capable of doing anything that people without Down syndrome can, especially if a person with Down syndrome is taught the proper skills and is supported in order to develop strong self-esteem.
For me to help to this area of growth, I need to continue volunteering at LifeTown in New Albany, Ohio. LifeTown is a unique place that mimics a real city where students with disabilities can come to learn important life skills, such as money management and resume building, that will help in their transition to adulthood. I feel a sense of responsibility to volunteer at LifeTown because it relies on volunteers to keep the place going for the students. I think that students with Down syndrome and students with disabilities in general have the right to learn the same life skills to gain independence that any student without Down syndrome or a disability learns. As a servant leader, volunteering at LifeTown can help students with Down syndrome and students with other disabilities for the very sake of helping them do exactly what they need and want to be doing. I think this faceless image of people with different careers suits my opinion and learning experience perfectly; people with Down syndrome are not only capable of having a job, but they can have successful careers in a wide variety of settings—they just need the same encouragement, support, and belief from others that people with Down syndrome are capable of anything that people without Down syndrome can do.
Reference:
Kumin, L., & Schoenbrodt, L. (2015). Employment in adults with Down syndrome in the United States: Results from a national survey.Journal of Applied Research in Intellectual Disabilities.
Strengths-Based Needs
Children with Down syndrome often become segregated from their peers without Down syndrome because of the current structure of many schools. Evidence suggests that children living with Down syndrome benefit from integrated school systems where they are actively in the same classrooms with peers without Down syndrome (Davis, 2008). In integrated, mainstream classrooms and school settings, students with Down syndrome develop increased language skills and more sophisticated social skills than peers with Down syndrome that did not attend integrated schools (Davis, 2008). Furthermore, Cebula, Moore, & Wishart (2010) suggested that building emotional intelligence is crucial to social development within people with Down syndrome. Integrated schools would be the ideal place for this growth to occur. I agree with the findings of Davis (2008) and believe that children with Down syndrome and children without Down syndrome should be in the same classrooms so that both can learn from one another and grow together. I was unaware that specific schools for children with Down syndrome existed, where the entire school is curated for students with Down syndrome. I imagine that the integration of students with Down syndrome with students without Down syndrome would also help decrease the stigma that people with Down syndrome have in society due to exposure. However, I also recognize that children with Down syndrome have different needs than children without Down syndrome because of the daily oppression that they face living in an ableist society. Integrated schools must recognize this as well for optimal success of students with Down syndrome. Schools, like the one in this picture, should be all-inclusive; children with Down syndrome can handle it and need it. Children without Down syndrome can handle it and need it, too.
References:
Cebula, K. R., Moore, D. G., & Wishart, J. G. (2010). Social cognition in children with Down’s syndrome: challenges to research and theory building. Journal of Intellectual Disability Research, 54(2), 113-134. doi:10.1111/J.1365-2788.2009.01215.X
Davis, A. S. (2008). Children with Down syndrome. School Psychology Quarterly, 23(2), 271-281. doi:10.1037/1045-3830.23.2.271
Systemic Challenges
People living with Down syndrome, parents of those living with Down syndrome, and potential parents of people with Down syndrome face many systemic challenges. Among these challenges exist the lack of public access to information about the syndrome itself. As of 2018, only 20 states require medical providers to supply patients with approved fact sheets and information about local support services (Graham, 2018). Parents are entering new situations without the proper tools to understand the needs of a child with Down syndrome (Santin, 2012). This lack of knowledge continues to contribute to the stigma associated with Down syndrome (Santin, 2012). I did not realize that many expecting parents, especially those who are told their baby may have Down syndrome, are not adequately prepared with information about the genetic disorder. If all medical providers were required to provide readily available information about Down syndrome to expecting parents, like those presented in this image, people would better understand the potential vibrant lives of people with Down syndrome from the start. Requiring medical providers to give information and support to expecting parents would ensure better care of children with Down syndrome. It would also help reduce the stigma that people with Down syndrome endure as well. Thus, I hope what’s depicted in this image will become a part of the norm in a doctor’s office.
References:
Graham, Ruth. (2018, May 31). Choosing life with Down syndrome. Slate. Retrieved from https://www.slate.com
“Our Brochures.” (2015). Down syndrome Victoria.Retrieved from http://www.downsyndromevictoria.org.au
Santin, Teresa. (2012). Is Down syndrome doomed?: How state statures can help expectant parents make informed decisions about prenatal Down syndrome diagnoses. Journal of Environmental and Public Health Law, 6(2), 241-276.
“Wall Mount Brochure Display Racks.” (2018, June 12). Retrieved from http://www.newspress.me
Annotated Bibliography
Cebula, K. R., Moore, D. G., & Wishart, J. G. (2010). Social cognition in children with Down’s syndrome: challenges to research and theory building. Journal of Intellectual Disability Research, 54(2), 113-134. doi:10.1111/J.1365-2788.2009.01215.X
The authors of this article provided an overview of the challenges to social cognition in children with Down syndrome, both internally and within research. Their references are extensive and current. The authors noted that interventions had moved away from child-centered, cognitive abilities of children with Down syndrome but have begun to integrate social cognition and the role of early interactions with others. Although people recognize that building emotional intelligence within children with Down syndrome is crucial to their social development, knowing how to do so is not as obvious. The authors suggest that development of a comprehensive explanatory model of social cognition in Down’s syndrome would help drive future research. I would have liked for them to explore children with Down’s syndrome’s experiences within the school setting, especially because I found many of the same references, without them discussing much about it. Perhaps I can look further into this matter because school settings are prime opportunity for children with Down Syndrome to develop understanding of emotion within a social context.
Davis, A. S. (2008). Children With Down Syndrome. School Psychology Quarterly, 23(2), 271-281. doi:10.1037/1045-3830.23.2.271
This article provides a thorough overview of Down syndrome and the needs and issues that should be addressed during intervention. Overall, children with Down syndrome need physical, social, and emotional support from all areas. Children with Down syndrome benefit from attending integrated, mainstream schools because it provides them with necessary social interactions, as well as increased language skills in comparison to those who attend “special schools.” This article suggests that although Down syndrome is well-researched, many of the evidence-based intervention studies have small sample sizes. Furthermore, more research is still needed for evidence-based interventions in the classroom setting. This article has its own limitations in that it is ten years old. Though it provides a thorough overview of Down syndrome, it may lack new, possibly pertinent information about the syndrome that has developed in the past ten years. However, it is still a relevant article because it reiterates the importance of school integration and the positive affect mainstream schools has on children with Down syndrome.
Jover, I., & Torres, D. (2009). The emergence of the psychological life of the child with Down syndrome: Reflections regarding early intervention. International Medical Review on Down Syndrome, 13(2), 25-28. doi:10.1016/S2171-9748(09)70020-0
This is a position paper that argues for the restructuring of how society and parents interact with and support children with Down syndrome. The author argues that growth cannot occur without any frustration. He further notes that as a society, people struggle with teaching children without disabilities to overcome frustration. Moreover, he suggests that because people are so concerned with the development of children with Down syndrome, they want to protect children with Down syndrome from any hardships. As a result, he says growth cannot occur. He thinks children with Down syndrome should acknowledge their identity as a person with Down syndrome to form their Self and integrate with society. Perhaps counseling should address building self-awareness, self-identity, and self-esteem when working with children with Down syndrome. This position paper cites outdated literature and may need revision itself because of the lack of cited recent literature.
Mallardo, M., Cuskelly, M., White, P., & Jobling, A. (2014). Mental health problems in adults with Down syndrome and their association with life circumstances. Journal of Mental Health Research in Intellectual Disabilities, 7(3), 229-245.
This study focused on the mental health of adults with Down syndrome in relation to their current and past life circumstances, including relationships with parents and care persons and activities they enjoyed. The study conducted had 49 adults with Down syndrome ranging in age from 20 to 31 years old. The authors found that 14.3% of the sample received a diagnosis of Depression. Of these adults, they were less engaged in their daily activities than the other adults. Although this finding is important, it is necessary to note that people who have depression, regardless of disability status, are most likely disengaged from everyday activities. However, review of mental health among people with Down syndrome is important, and more evidence-based intervention needs to occur to ensure optimal mental health of all people with Down syndrome. Limitations of this study include its small sample size as well as its inability to have causation.
Marshall, J., Tanner, J. P., Kozyr, Y. A., & Kirby, R. S. (2015). Services and supports for young children with Down syndrome: parent and provider perspectives. Child: Care, Health and Development, 41(3), 365-373. doi:10.1111/CCH.12162
This peer-reviewed article presents a focus group study on the families of ten children with Down syndrome in Florida from non-Hispanic and Hispanic ethnicities. From the study conducted, researchers found that information about babies with Down syndrome were not readily available to parents or outdated, and for non-English speaking parents, finding information was even more difficult. Additionally, they found that communities offering support for families with children who have Down syndrome were hard to find, but if found, that they provided a necessary haven for families. Parents also found it hard to make time to find supportive communities because most of the time, they were headed from appointment to appointment for their child. Finally, when it came time for their child with Down Syndrome to go to school, schools were inadequately prepared for children with Down syndrome. Overall, more support and intervention are needed for people with Down syndrome throughout all life’s stages. This study is limited by its lack of generalizability in both amount of people and place.
Mitchell, D. B., Hauser-Cram, P., & Crossman, M. K. (2015). Relationship dimensions of the ‘Down syndrome advantage’. Journal of Intellectual Disability Research, 59(6), 506-518. doi:10.1111/JIR.12153
In this article, the authors conducted a study to examine the ‘Down syndrome advantage’ using a sample of 43 children with Down syndrome and 54 children with a range of non-specific developmental disabilities, all whom were three-years-old and enrolled in the Early Intervention Collaborative Study, which is a longitudinal investigation of 190 children with disabilities and their mothers. Some mothers were asked to complete interviews while others completed child assessments. They were all asked to complete self-administered questionnaires as well. The ‘Down syndrome advantage’ suggests that parents of children with Down syndrome have it easier than parents of children with other intellectual disabilities. The authors of this study predicted that the ‘Down syndrome advantage’ exists because of the demographics of the mothers of children with Down syndrome, and they found this prediction to be true. This study has limitations in lack of diversity within sampling of families. It also examines children at three years old, where the parent-child interaction may be different from when the child grows older. I further question this study and its lack of generalizability because privilege and oppression are vital in today’s social conversation, and when people start questioning whether one unprivileged group has more benefits than the other unprivileged group, we minimize each person who identifies with such group’s identity’s experience entirely.