Young Adults With Disabilities and Uninsured for Health Care

Alpha Omegan ◽  
2009 ◽  
Vol 102 (3) ◽  
pp. 102-106
Author(s):  
H. Barry Waldman ◽  
Steven P. Perlman
2003 ◽  
Vol 26 (1) ◽  
pp. 64 ◽  
Author(s):  
Susan Bailey ◽  
Bev O'Connell ◽  
Julian Pearce

Young children with disabilities and their carers or parents tend to form a long-term dependent relationship with a paediatrician throughout childhood. At some stage when the young person with a disability reaches early adulthood, the relationship is severed. This paper draws upon recent research undertaken by the authors that describes the difficulties experienced by young people with disabilities as they go through the transition from paediatric care to adult mainstream health care services. The purpose of this article is to present the argument that the dependent,paternalistic relationship that tends to exist between young people with disabilities (and/or their carers) and paediatricians throughout childhood does not facilitate the successful negotiation of adult mainstream health care services, nor optimally promote the well-being of these young people with disabilities. It is proposed that the promotion of autonomy (or self-determination) via a well planned transition program will increase the likelihood that young adults with disabilities and/or their carers will be empowered to successfully negotiate the current mainstream health care system in Australia, and will enhance the well-being of young adults with disabilities.


2004 ◽  
Vol 36 (3) ◽  
pp. 26-32 ◽  
Author(s):  
Karen Goldrich Eskow ◽  
Sandra Fisher

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1294.1-1294
Author(s):  
C. Helin Hollstrand ◽  
K. Nilke Nordlund

Background:With the launch of The Swedish Young Rheumatics Report in April of 2018, we also presented new way of thinking and a tool called the Dreamscale, our complement to the traditional VAS scale used to assess pain. In October of 2018, we organized a workshop together with communication consults where we invited some of our members in different ages and health care professionals working with children, youths and young adults with rheumatic diseases, to try and reach a joint definition of what the Dreamscale is and could be, as we saw its huge potential. This is where the idea of the Dreamcatcher was born.Objectives:The objective is to create an innovative digital tool for young people with rheumatic disease. It takes its starting point in what is healthy and what is possible, rather than focusing on sickness and limitations. Using behavioral science, nudging and social functions, the Dreamcatcher has the potential to lower the barriers to living an active lifestyle, while also serving as a tool for dialogue with health care professionals, resulting in more efficient meetings, better resource planning and the gathering of valuable data to the national quality registers. It is also a digital tool with a big potential for development thanks to its open source code and its focus on enabling activity and participation, there is an obvious potential to develop its functions to also serve other actors and patient groups.Methods:We teamed up with communication bureau Gullers Grupp, pharmaceutical company Pfizer, and two health care clinics in Stockholm, one for children and youths with rheumatic disease and one for adults, and received funding for one year of development from Vinnova, the Swedish innovation authority, in April of 2019. We started the project by conducting a study to try and narrow down what focuses the Dreamcatcher should have. The pilot study contains both workshops with patients, both children, youths and young adults, and with teams of health care professionals, as well as more in-depth interviews with both patients and health care professionals. Based on the study, we will develop a prototype of what the Dreamcatcher could look like, and it will most likely be an application used for smartphones.Results:The study narrows down the Dreamcatcher into three things: the Dreamscale, Dream data, and the Dream collective.The Dreamscaleis as previously explained a complement to the traditional pain-scale and a tool for patients to set goals towards their dreams, and for patients and health care professionals to co-plan care and medical treatment based on what’s most important to the patient.Dream datais where patients can self-track their disease, data which is also available for the health care to view and therefore to be better prepared before meeting with the patient. It is also a goal to have the Dream data transferred to the national quality registers.The Dream collectiveis a social function where patients using the app can connect and get inspired by each other. It is a place to share your dreams and build a community to show that rheumatic disease isn’t something that should ever stop you from going after your dreams!Conclusion:The prototype of the Dreamcatcher will be presented in May of 2020 and we think this it has great potential to help shift focus withing health care, to not just focusing on sickness and limitations but rather on dreams, joy of life and possibilities!References:[1]https://ungareumatiker.se/nytt-digitalt-patientverktyg-unga-reumatiker-tar-fram-dromfangaren/[2]https://www.youtube.com/watch?v=zD6PwSKeb8IDisclosure of Interests:None declared


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