Warfield M E, Chiri G, Leutz W N, Timberlake M
The Heller School for Social Policy and Management, Brandeis University, Waltham, Massachusetts, USA.
J Intellect Disabil Res. 2014 Dec;58(12):1091-104. doi: 10.1111/jir.12102. Epub 2013 Nov 25.
Massachusetts is one of a very limited number of states exclusively employing participant-direction to deliver autism waiver services to children. A crucial element of this waiver program is the work conducted by the state's Department of Developmental Services (DDS) staff and state-approved providers with waiver families to facilitate the implementation of the participant-direction model. Our study investigates the effect of the collaboration between state providers and family caregivers on family well-being.
We conducted a survey of 74 families who have been utilising waiver services for at least 6 months. Participants were asked to rate the coordination with providers as well as to report on parenting stress and impact of waiver services on family functioning. Data from in-home child and family assessments conducted by the state were also abstracted from program records.
After controlling for a host of variables hypothesised to affect the outcomes of interest, we found that the family's view of how well they coordinated with formal providers is significantly associated all of the outcomes. Families who reported greater coordination with state providers experienced lower parenting stress and reported a more positive impact on family functioning. Child externalising behavioural problems and caregiver's health rating also contributed to parenting stress and family functioning.
Our findings highlight the importance of establishing a collaborative partnership with waiver families in promoting family well-being. These results suggest that training and/or resources that foster team building and communication can positively impact family functioning among families with young children with autism.
马萨诸塞州是极少数专门采用参与者导向模式为儿童提供自闭症豁免服务的州之一。该豁免计划的一个关键要素是该州发展服务部（DDS）的工作人员以及州批准的服务提供商与豁免家庭开展的工作，以促进参与者导向模式的实施。我们的研究调查了州服务提供商与家庭照顾者之间的合作对家庭福祉的影响。
我们对74个使用豁免服务至少6个月的家庭进行了一项调查。参与者被要求对与服务提供商的协调情况进行评分，并报告育儿压力以及豁免服务对家庭功能的影响。同时，我们还从项目记录中提取了该州进行的家庭儿童入户评估数据。
在控制了一系列假设会影响相关结果的变量后，我们发现家庭对与正规服务提供商协调程度的看法与所有结果均显著相关。报告与州服务提供商协调程度更高的家庭育儿压力更低，且报告称豁免服务对家庭功能有更积极的影响。儿童的外化行为问题和照顾者的健康评分也会影响育儿压力和家庭功能。
我们的研究结果凸显了与豁免家庭建立合作关系对促进家庭福祉的重要性。这些结果表明，有助于团队建设和沟通的培训和/或资源能够对患有自闭症的幼儿家庭的家庭功能产生积极影响。
