RESPOND TO Q&A
Ethical and legal considerations can become tricky, especially when dealing with a person who has a disability, as individuals with disabilities should be able to make their own decisions and have opinions in their life circumstances. However, not all people with developmental disabilities (DD) can ethically and legally defend themselves without advocates, caregivers, or medical professionals. Still, all humans with or without a disability should be a part of all life possibilities and involvement. In the article “Approach to Caring for Developmentally Disabled Adults in The Community,” highlights some of the medical, ethical, and legal concerns when providing primary care to adults with DD living with family or caregivers for support. The article articulated how a middle-aged man with cerebral palsy (CP) was living with his elderly mother, and he required total nursing care and was also nonverbal. Although their living condition was declared uninhabitable as they lived in poverty, it showed he was not physically abused or lacked nourishment; but still, his aging mother was seen as “unstable” due to her age-related issues. According to (Osmun et al., 2015), “a study showed that people with severe disabilities required an average of 71 hours of care per week. Moreover, 93% of this care was provided by “informal” caregivers, such as family, friends, and charitable organizations” (p.2). In the discussion of the article, the ethical obligations of clinicians and physicians were involved in acting as health advocates for the middle-aged man.
However, in most cases, the consent of a legal guardian (which was his mother) should be considered the primary advocate, but in this case, the ethical concerns of his aging mother were seen as incapable of providing the care her son needed. Still, according to (Osmun et al., 2015), “the mother was capable of making decisions on her son’s behalf, and there was no evidence that she was unstable or suffered from dementia. Although the son might not have been capable of making treatment and personal care decisions, it was important to respect his wishes if they could be ascertained” (p.3). Though legal considerations would suggest the need for a more stable living arrangement for the middle-aged man and his aging mother, such as moving into community-based housing, a nursing home, or care facilities, the mother did not neglect her son despite their living circumstances. This should be acknowledged as all people’s living situations will not be the same; evidently, we are not born with the decision of how we live and are created as individuals. However, ethical and legal issues based on healthcare delivery for the middle-aged man with CP should be articulated with both the primary caregiver and professional health providers to integrate optimal services needed to ensure proper support. It is critical to understand and communicate the “needs” of a person with a DD, especially if they are nonverbal; their family member/caregiver knows them best, which can help professionals assist and provide the necessary care they need to live a wholesome life.