Gilson Carly B, Bethune Lauren K, Carter Erik W, McMillan Elise D
Carly B. Gilson, Lauren K. Bethune, Erik W. Carter, and Elise D. McMillan, Vanderbilt University.
Intellect Dev Disabil. 2017 Oct;55(5):347-360. doi: 10.1352/1934-9556-55.5.347.
The importance of supporting families with members who have intellectual and developmental disabilities (IDD) is well-established in both policy and research. Yet little is known about how familiar parents are with existing resources (e.g., programs, supports, trainings), what information they would consider most helpful, and how they would prefer to access resources. Our study examined the resource needs of 1,738 parents of children and adults with IDD in the state of Tennessee. Most parents reported limited familiarity with programs across every domain (e.g., residential, vocational, postsecondary). The extent to which parents indicated various types of information would be helpful varied by demographic factors (e.g., daughter or son's age, disability diagnosis, socioeconomic status), as did the avenues through which they indicated they were most likely to access information and resources. We offer recommendations aimed at equipping parents with relevant supports and resources to guide their son or daughter's journey across the lifespan.
在政策和研究方面，为有智力和发育障碍（IDD）成员的家庭提供支持的重要性已得到充分确立。然而，对于父母对现有资源（如项目、支持、培训）的熟悉程度、他们认为最有帮助的信息是什么，以及他们希望如何获取资源，我们却知之甚少。我们的研究调查了田纳西州1738名患有IDD的儿童和成人的父母的资源需求。大多数父母表示对各个领域（如住宿、职业、高等教育）的项目了解有限。父母表示各类信息有帮助的程度因人口统计学因素（如子女年龄、残疾诊断、社会经济地位）而异，他们表示最有可能获取信息和资源的途径也因这些因素而有所不同。我们提出了一些建议，旨在为父母提供相关支持和资源，以指导他们子女一生的成长历程。
