Cook- Down Syndrome- Blog 6

Down Syndrome

Down syndrome is a genetic disorder characterized by delayed development, mild intellectual disabilities, and characteristic facial features (Akhtar, F., & Bokhari, 2023). Down syndrome is caused by a third chromosome 21. Down syndrome is considered a disability, which makes it essential to consider how it legally and ethically relates to the law. 

 Legal and Ethical Concerns

There are a couple of legal and ethical concerns related to having a disability like Down syndrome. Legally, individuals with Down syndrome have a right to fully participate in all aspects of civic life, which means that there needs to be regulations and standards in place to protect their rights (Law, Regulations & Standards, 2023). Businesses, governments, and education systems are mandated to make reasonable accommodations for community members with Down syndrome to participate. Reasonable accommodations mean that accommodations are readily achievable without much expense or difficulty. As an example, individuals with Down syndrome may need physical, auditory, or visual accommodations in the classroom depending on their individual situation. In the eyes of the law individuals with Down syndrome should not be denied legal or mental capacity just based on disability  (Craigie et al., 2019). Many individuals with Down syndrome live independent or almost independent lives and thus should be treated as competent individuals as this is their right. 

For a look at a real-life application of the legal concerns regarding Down syndrome that can provide more insight into the important legal considerations for families and individuals with Down syndrome view the following video that discusses laws in the UK about Down Syndrome: 

The video above shows how legal and ethical issues are intrinsically linked. In terms of the law, it is ethically imperative for individuals with Down syndrome to be treated with the respect and dignity they deserve (Behnke, 2009). Ethically, it is important to address the stigma and discrimination towards those with Down syndrome (Watanabe et al., 2022). Individuals with Down syndrome often face stigma and are faced with assumptions about their value. For example, in the past genetic screening for Down syndrome was used to recommend abortion (Reynolds, 2003). However, this practice is considered unethical in modern-day practices in most states and only allowed early in pregnancy as it is considered to violate the rights of individuals with Down syndrome as it places the assumption that a life with Down syndrome is less valuable than a life without. Ethical considerations need to be made to respect the rights and dignity of those with Down syndrome such as through providing equal treatment, accommodations, and equal opportunities. Action to address, minimize, or eliminate the barriers within society for those with Down syndrome should be considered. For example, children with Down syndrome should ethically be given the same educational opportunities as children without Down syndrome by offering them the resources they need for success such as a speech therapist.  

Review the following link for more information on ethical considerations related to disability in general:

Ethical Assumptions and Ambiguities in the Americans with Disabilities Act | The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine | Oxford Academic (oup.com)

Is Meeting the Letter of the Law Sufficient?

The Americans with Disabilities Act (ADA) sets standards and regulations for protecting Americans with disabilities, but following the law to the letter when considering the provision of accommodations is not always sufficient. ADA sets adequate legal provisions, but accommodations that meet legal standards do not necessarily address all the barriers a person with Down syndrome may face causing them to fail at ensuring equality (Pappas, 2023). Individuals with Down syndrome and other forms of intellectual disabilities face a lot of implicit negative attitudes from people that can affect their access to services, healthcare, and education. Even with accommodations in place the social barriers a person may face still limit their ability to engage with society, which is something a law alone is not enough to overcome. Another issue can arise from the fact that the law only requires reasonable accommodation to be taken, which can pose a problem in determining what is reasonable.  What is feasible for a big company to accommodate may not be as feasible for a small company. For example, a small company may not be able to easily accommodate the need for a flexible schedule or pay for certain accommodations for some people with Down syndrome. Reasonable accommodations can include changes to a job application process, changes to the work environment, or to the way a job is usually done (Small Employment, n.d.). The resources available to a company can impact the meaning of reasonable accommodation under the law, which makes strictly following the letter of the law insufficient. 

Discuss and Illustrate the Spirit of the Law

ADA has a strong ethical spirit meant to promote equality by reducing stigma and promoting a person’s right to fully participate in all aspects of society (Americans with, n.d.). The ethical spirit of the law is commendable but does not necessarily demand compliance, which is why both ethical and legal components of the law are important in fostering acceptance of disabilities like Down syndrome. Accommodations should follow the ethical spirit of the law. For accommodations to be effective they must follow the ethical spirit of the law, as accommodations without support are not perceived as satisfactorily as they are when social support for the accommodation is present (Dong et al., 2023). Individuals need to know that the accommodations they receive are viewed as meaningful and not just hassles. For example, in the classroom teachers may make accommodations by including visual lessons as students with Down syndrome may have language difficulties (Daunhauer et al., 2014). For the accommodation to be effective it needs to be instated in a supportive way and entered into the classroom as if it were a normal aspect of class, not anything special. In the workplace, an employer may need to embody the ethical spirit of the law and demonstrate workplace tasks to an employee with Down syndrome rather than solely provide them with verbal instructions. However, in order for the ethical spirit of the law to be sufficient when providing accommodation it is important that a person embody the spirit of the law in their attitude. 

Potential Issues Impact on the Individual

These legal and ethical issues have direct impacts on individuals with Down syndrome. Individuals with Down syndrome who also suffer from an intellectual disability may also have negative experiences with laws as they may experience a reduced sense of independence as under legal terms their decision-making capacity may be considered limited (Craige et al., 2019). Individuals may be denied the opportunity to make their own decisions and enjoy the same level of independence as others. Some individuals with Down syndrome may need assistance throughout their whole life but there is an increasing number of people with Down syndrome living independently (Krell et al., 2021). ADA specifically has both positive and negative aspects for individuals with Down syndrome. ADA allows for legal protections for those with disabilities like Down syndrome (Americans with, n.d.). One of the negative aspects of ADA is that myths about it fuel stigma. There are a lot of misconceptions about the legal aspects of the ADA such as that the ADA forces employers to hire individuals with disabilities regardless of their ability and prevents employers from firing individuals with disabilities (Employers and, n.d.). This is not true though as individuals with disabilities must be qualified and competent to get hired and are subject to being fired the same as anyone else. ADA gives equal opportunity allowing individuals to fulfill their potential. ADA does not give an advantage to a person but merely balances the playing field. Accommodations are not special privileges but rather measures instated to enable equal opportunity. These negative perspectives influence individuals with disabilities and make them nervous about sharing about their disability and seeking employment (Behnke, 2009).

Impact on Family/Friends, Environment, and Society

These issues can also impact family and friends, the environment, and society as a whole. Family and friends are impacted by the legal and ethical considerations regarding disability as they are often the caregivers or support systems for individuals. Families and friends face the same courtesy stigma and endure the hardships of loved ones who face societal rejection whether at school, work, or in peer relationships (Watanabe et al., 2022). Families may provide informal support in decision-making processes or in some instances families may take on caregiving and custodial roles (Huiracocha et al., 2017). Laws like the ADA help to shape perspectives of disability and can foster positive parental and societal attitudes as they embody societal norms and attitudes about disability.  

The environment is impacted by these issues as there is a demand for not just workplace but societal accommodations in a person's environment that allow equal access to government buildings and other services (Law, regulations & standards, 2023). There needs to be environmental changes to facilitate an equal society as most aspects of society are developed for the typically developing person excluding those with unique characteristics and varying levels of impairment. Society is impacted by these potential issues as it is society's job to enforce the law and act within the spirit of it (American with, n.d.). The ADA has set a standard and specific regulations, but it is the responsibility of society to carry these goals out. 

References

Akhtar, F., & Bokhari, S.R.A. (2023). Down syndrome. StatPearls Publishing. https://www.ncbi.nlm.nih.gov/books/NBK526016/

Americans with disabilities act of 1990. (n.d.).  United States Department of Justice Civil Rights Division.  https://www.ada.gov/law-and-regs/ada/#title-42---the-public-health-and-welfare

Behnke, S. (2009). Ethics rounds: Disability as an ethical issue. Monitor on Psychology, 40(6). https://www.apa.org/monitor/2009/06/ethics

Craigie, J., Bach, M., Gurbai, S., Kanter, A., Kim, S. Y. H., Lewis, O., & Morgan, G. (2019). Legal capacity, mental capacity and supported decision-making: Report from a panel event. International journal of law and psychiatry, 62, 160–168. https://doi.org/10.1016/j.ijlp.2018.09.006

Daunhauer, L. A., Fidler, D. J., & Will, E. (2014). School function in students with Down syndrome. The American Journal of Occupational Therapy, 68(2), 167-176. https://doi.org/10.5014/ajot.2014.009274

Dong, S., Eto, O., Liu, L., & Villaquiran, A. (2023). Examining psychosocial factors associated with receiving workplace accommodations among people with disabilities. Work, 75(3), 799–811. https://doi.org/10.3233/WOR-220230

Employers and the ADA: Myths and facts. (n.d.). United States Department of Labor. https://www.dol.gov/agencies/odep/publications/fact-sheets/americans-with-disabilities-act

Huiracocha, L., Almeida, C., Huiracocha, K., Arteaga, J., Arteaga, A., & Blume, S. (2017). Parenting children with Down syndrome: Societal influences. Journal of Child Health Care, 21(4), 488-497. https://doi.org/10.1177/1367493517727131

Kopelman, L. M. (1996). Ethical assumptions and ambiguities in the Americans with Disabilities Act. The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine, 21(2), 187-208. https://doi.org/10.1093/jmp/21.2.187

Krell, K., Haugen, K., Torres, A., & Santoro, S. L. (2021). Description of daily living skills and independence: A cohort from a multidisciplinary Down syndrome clinic. Brain sciences, 11(8), 1012. https://doi.org/10.3390/brainsci11081012

Law, regulations & standards. (2023). United States Department of Justice Civil Rights Division.  https://www.ada.gov/law-and-regs/

Pappas, S. (2020). Despite the ADA, equity is still out of reach. Monitor on Psychology, 51(8). https://www.apa.org/monitor/2020/11/feature-ada

[Photograph of guy with Down syndrome]. (n.d.). https://ndss.org/sites/default/files/archive/2020/08/6.png

[Photograph of Martin Luther King Junior quote]. (n.d.). https://www.linkedin.com/pulse/honoring-legacy-dr-martin-luther-king-jr-supporting-/

[Photograph of Thomas Messner quote]. (n.d.). https://lozierinstitute.org/wp-content/uploads/2022/07/messner-paper-quote.jpg

[Photograph of world Down syndrome day]. (n.d.). https://www.cityofpearl.com/wp-content/uploads/2023/03/Pearl-Down-Syndrome-Day.png

Reynolds, T. M. (2003). Down’s syndrome screening is unethical: Views of today’s research ethics committees. Journal of Clinical Pathology, 56(4), 268-270. https://doi.org/10.1136/jcp.56.4.268

Sky News. (2021). Woman with Down’s syndrome loses high court fight to change abortion law [Video]. YouTube. https://www.youtube.com/watch?v=sjc1RgzezVQ

Small employers and reasonable accommodation. (n.d.). United States Equal Employment Opportunity Commission. https://www.eeoc.gov/laws/guidance/small-employers-and-reasonable-accommodation

Watanabe, M., Kibe, C., Sugawara, M., & Miyake, H. (2022). Courtesy stigma of parents of children with Down syndrome: Adaptation process and transcendent stage. Journal of Genetic Counseling, 31(3), 746-757. https://doi.org/10.1002/jgc4.1541

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