In this assignment, we look at the family impacted by a member aging with a disability and the impact of that family on the person with the disability. The family relationships of people aging with disability is just one more factor of diversity adding to the complexity of issues experienced by this population. In almost all cases, family plays a large part in the development of a person with a life-long disability. Parents are the first, and often the life-long, primary care providers. Prior to this generation of people aging into their 60s and beyond, it was only rarely that a parent of a person with a disability had to be concerned about “what happens after I’m gone” because it was not likely their child would outlive that parent. That is no longer the case. The transition of care of an aging person with a disability from family care to vendor purchased care is a huge and relatively new field within human services. The NPR podcast required this week focuses on a unique group – those people with Down’s Syndrome who are living longer than their parents, who- have historically been the primary and only caretaker needed. So, what are the needs of those individuals under the categories of biological, social, psychological and financial? Can you consider the needs of a highly diverse disabled population combined with an equally diverse aging population and pare all their potential issues into a need-based service structure? That’s really the task at hand for future employees in the Human Services Industry. Chapter 6 discusses interviews of parents who have taken care of their disabled children all their lives and who are now aging to the point they can no longer provide the kind of care they used to – while, at the same time, their children are aging and losing more and more functional independence. This chapter does not focus on the input of the actual people with disabilities. It focuses on the parents. However, it gives great insight into the challenges both groups experience. One outcome of this study noted parents feeling that they were misunderstood and mistrusted by human service professionals (p. 97). The goal of the parents, just as with the service providers, was for their children to become independent. The parents felt, however, the service providers didn’t have the big picture on how to achieve that and the service providers felt the parents were simply not willing to let go. VIEW: https://smartplayer.captionsync.com/play.php?vid=1568831962jbuckholz_831b20435a9e Listen to podcast and explore the websites: National Public Radio Podcast: Behind Closed Doors – Down Syndrome Listen to the Podcast: May 14, 2007 (or read the transcript) ”While many aging parents rely on offspring to become their caretakers in later years, parents whose children have Down syndrome often have a different story. The needs of adults with the disorder can extend the years of direct parent involvement – making it almost endless. Two parents of children with Down syndrome, including U.S. Rep. Eleanor Holmes Norton, a democrat from Washington, D.C., share their stories.” READ: Chapter 6 from the Jeppsson-Grassman, E., & Whitaker, A text. Assignment (Individual Option): Answer these questions but not with just your opinion. Support your recommendations with observations from experts – from the materials in the classroom, from other research you may have done, and/or from personal interviews/experiences with professional service providers, family care-takers of people with disabilities, or people who are aging with disabilities. Be sure to make connections so I can see your use of critical thinking skills. Share your thoughts on the dis-connect between the parent’s perception of service providers and vice-versa mentioned in Chapter 6. As a service provider, how would you utilize (or not utilize) parents, who have provided care for their disabled child all his life, as a resource for planning adult independence? What criteria would you use for “drawing the line” on parent involvement/influence/decision making in the disabled person’s adult life? Make suggestions and provide evidence-based support for those suggestions
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