Advocating for Supports to Improve Service Transitions

Last updated on July 2021

Recruitment

Recruitment Status: Active, not recruiting
Estimated Enrollment: Same as current

Summary

Conditions

Autism
Autism Spectrum Disorder

Type

Interventional

Phase

Not Applicable

Design

Allocation: RandomizedIntervention Model: Parallel AssignmentIntervention Model Description: After eligibility is determined and baseline data are collected, parents will be randomized, in two cohorts, to the treatment or materials-only control condition. Given the relatively small sample size in each cohort at each site (n = 30 at each of three sites), simple randomization is not recommended as it might result in unequal group sizes. The investigators will use 1:1 block randomization within each site to give equal number of subjects in each group. To ensure balance of important covariates, the investigators will block on key moderators: whether the youth has an Intellectual Disability (ID) and is in high school. Co-occurring ID and being in vs. out of high school impact service eligibility, and ID impacts the likelihood of post-secondary education (PSE) and community employment. By balancing moderators, the researchers maximize power to detect effect modification of the treatment effect.Masking: Single (Outcomes Assessor)Masking Description: Research personnel collecting follow-up data are masked.Primary Purpose: Treatment

Participation Requirements

Age: Between 16 years and 125 years
Gender: Both males and females

Description

The proposed research plan is designed to develop and test the effectiveness of a national curriculum of the ASSIST (Advocating for SupportS to Improve Service Transition) program, a 12-week parent training program targeting parents' ability to advocate for services to improve the transition to adulthood for youth with autism spectrum disorder (ASD). Preliminary work demonstrated that youth whose parents participated in the "Volunteer Advocacy Program- Transition" or VAP-T (a pilot 12-week intervention program on which ASSIST is based) were more likely to be employed or in postsecondary education (PSE), and received more school-based and adult services, when compared to a wait-list control group. In the proposed research, the investigators conduct a randomized-controlled trial with 180 families to build on previous findings in four important ways: 1) by making modifications to the program content to make it applicable to service systems across the nation, and rigorously testing whether the ASSIST program is effective when delivered across three states (Tennessee, Illinois, Wisconsin); 2) by incorporating the perspective of offspring with ASD into the intervention and data collection; 3) by examining mechanisms by which the ASSIST program influences youth outcomes; and 4) by exploring barriers to participation and factors that moderate treatment response. The investigators hypothesize that ASSIST participation will improve parents' advocacy ability, leading to higher rates of employment, PSE, social participation, and service access for youth with ASD. The investigators will test this hypothesis by randomly assigning parents of transition-aged youth with ASD (ages 16-26) to either a treatment or active, materials-only control group, and following families over 3 years. The investigators propose four Specific Aims: (1) To use a multi-site randomized-controlled trial to examine whether ASSIST participation increases parent advocacy ability (i.e. the intervention target); (2) To test whether participating in the ASSIST leads to improved youth outcomes (employment, post-secondary education, social participation, service access) during the transition to adulthood; (3) To examine which aspects of parent advocacy ability mediate the relations between ASSIST participation and youth outcomes; and (4) To explore moderators of treatment response and barriers to participation in the intervention. By rigorously testing a new intervention to improve the transition to adulthood for youth with ASD, the proposed research addresses an area of critical need as identified by the 2016-7 Interagency Autism Coordinating Committee Strategic Plan. The project will result in a new intervention to improve outcomes for youth with ASD that can be disseminated through state and local agencies across the nation.

Tracking Information

NCT #

NCT04173663

Collaborators

University of Illinois at Urbana-Champaign
University of Wisconsin, Madison

Investigators

Principal Investigator: Julie Lounds Taylor, PhD Vanderbilt University Medical Center