title: Family well-being in a participant-directed autism waiver program: the role of relational coordination.
abstract: BACKGROUND
  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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: The Heller School for Social Policy and Management, Brandeis University, Waltham, Massachusetts, USA.
authors.forename: M E
authors.initials: ME
authors.lastname: Warfield
authors.forename: G
authors.initials: G
authors.lastname: Chiri
authors.forename: W N
authors.initials: WN
authors.lastname: Leutz
authors.forename: M
authors.initials: M
authors.lastname: Timberlake
mesh_terms: D000328:Adult; D002648:Child; D002659:Child Development Disorders, Pervasive / Q000451:nursing*; D002675:Child, Preschool; D003153:Community Health Services / Q000379:methods* / Q000592:standards; D005190:Family / Q000523:psychology*; D005260:Female; D006699:Home Care Services / Q000592:standards; D006801:Humans; D008297:Male; D008404:Massachusetts; D016487:Parenting / Q000523:psychology; D011368:Professional-Family Relations; D015397:Program Evaluation; D013315:Stress, Psychological / Q000523:psychology*
keywords: autism waiver program; parenting stress; participant direction; relational coordination