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“掌控局面”:家长对参与主导型儿童孤独症医疗补助计划的选择的看法。

"In the driver's seat": Parent perceptions of choice in a participant-directed medicaid waiver program for young children with autism.

机构信息

Starr Center for Intellectual and Developmental Disabilities, Heller School for Social Policy and Management, Brandeis University, 415 South Street MS 035, Waltham, MA, 02454, USA,

出版信息

J Autism Dev Disord. 2014 Apr;44(4):903-14. doi: 10.1007/s10803-013-1942-4.

Abstract

This study investigated families' experience of choice within a participant-directed Medicaid waiver program for young children with autism. Fourteen parents or grandparents participated in in-depth interviews about their experience of choosing personnel, directing in-home services, and managing the $25,000 annual allocation. Key findings included families' preference to hire providers with whom they have a prior relationship, parent empowerment and differences of opinion about parents as teachers. Professionals implementing participant directed service models could benefit from understanding the strong value parents' placed on the personalities and interpersonal skills of providers. Parents' descriptions of directing rather than merely accepting autism services revealed increased confidence in their ability to choose and manage the multiple components of their children's HCBS autism waiver program.

摘要

本研究调查了在一项面向患有自闭症的幼儿的、以参与者为导向的医疗补助豁免计划中,家庭在选择方面的体验。14 位父母或祖父母参与了深入访谈,内容是他们在选择人员、指导家庭服务以及管理每年 25000 美元拨款方面的体验。主要发现包括,家庭更倾向于聘请与他们有先前关系的提供者,以及父母赋权和关于父母作为教师的不同意见。实施以参与者为导向的服务模式的专业人员可以受益于了解父母对提供者的个性和人际交往技能的重视。父母对指导而不是仅仅接受自闭症服务的描述,显示出他们对自己选择和管理孩子的 HCBS 自闭症豁免计划的多个组成部分的能力的信心增强。

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