Doctoral Dissertation Research: The Autonomy of Adults with Developmental Disabilities

最近对智力和发育残疾人服务的改革一直着眼于增加个人在社区中自主和正常生活的机会。然而，患有ID/DD的成年人在成功成年的几乎所有指标上都表现出不良结果。该项目研究了需要照顾和鼓励自主性之间的紧张关系对ID/DD患者成年生活的影响。更具体地说，这项研究调查了残疾成年作为一个集合的照顾安排-由重要的人，计划和政府支持-塑造自主的机会。这项研究有三个目标：评估一个新的独立生活计划的设计，为高功能的成人ID/DD，促进文献的护理伦理，并在与ID/DD成人的日常生活的背景下，调整管理州和联邦残疾资金的法规。 这项研究的结果有可能通过对政府政策的影响，更广泛的影响，有关照顾和直接对成年ID/DD.本项目将使用人种学研究，访谈和定性分析的政府法规和评估工具，调查残疾成年作为一套安排平衡照顾和自主权。在微观层面上，本研究将描述谈判的过程中照顾和自主权的成年人，家庭成员和工作人员在一个独立的生活计划之间的关系。在计划层面上，本研究将评估一种新型独立生活计划的计划设计和操作，该计划为居住在自己公寓中的ID/DD个人提供按需护理。在制度层面上，这项研究将调查政府对医疗补助，SSI/SSDI和食品券等权利计划的规定对ID/DD患者成年生活的影响，包括他们自主决策和从事成人行为的能力，如就业，婚姻，该奖项反映了NSF的法定使命，并通过使用基金会的智力价值进行评估，更广泛的影响审查标准。

Recent reforms in services for people with Intellectual and Developmental Disabilities (ID/DD) have been oriented toward increasing the individual's opportunity for autonomy and a normal life in the community. However, adults with ID/DD show poor outcomes on almost all indicators of successful adulthood. This project examines the influence of the tension between the need for care and encouragement of autonomy on the adult lives of people with ID/DD. More specifically, this study investigates disabled adulthood as a collection of care arrangements--created by significant others, programs, and government support--that shapes the opportunities for autonomy. This research has three goals: to assess the design of a novel independent living program for high functioning adults with ID/DD, to contribute to the literature on the ethics of care, and to situate the regulations governing state and federal funding for disability in the context of the daily life of adults with ID/DD. Findings from this study have the potential for broader impacts through influence on government policy concerning care and directly on caregiving for adults with ID/DD.This project will use ethnographic research, interviews, and qualitative analysis of government regulations and assessment tools to investigate disabled adulthood as a set of arrangements balancing care and autonomy. On the micro level, this study will describe the process of negotiating the relationship between care and autonomy for adults, family members, and staff at an independent living program. On the program level, this study will assess the program design and operation of a novel type of independent living program, one that provides as-needed care to individuals with ID/DD who live in their own apartments. On the institutional level, this study will investigate the influence of government regulations for entitlement programs like Medicaid, SSI/SSDI, and food stamps on the adult lives of people with ID/DD, including their ability to make autonomous decisions and to engage in adult behaviors like employment, marriage, and the activities of daily life.This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.