Advocating for Supports to Improve Service Transitions

Not Applicable

Active, not recruiting

• Conditions: Autism Spectrum Disorder; Autism
• Interventions: Behavioral: ASSIST

• Registration Number: NCT04173663
• Lead Sponsor: Vanderbilt University Medical Center

Brief Summary

This is a randomized intervention study to develop and test the national curriculum of a parent intervention training targeting parent's ability for advocate for services to improve the transition to adulthood for their youth with autism spectrum disorder (ASD).

UPDATE regarding COVID-19: Due to social distancing restrictions, the in-person intervention series that began in Winter 2020 was paused in Spring 2020 for Cohort 1 intervention groups (TN and IL). The series resumed in Summer 2020 via synchronous web-conferencing. In response to continued pandemic regulations, ASSIST was permanently moved to synchronous web-conferencing in Fall 2020, and this method was the mode of delivery for all remaining sessions and series at all sites (TN, IL, WI).

The remaining baseline data was also moved to remote collection through online interview and questionnaires in Spring 2020. The data collection for all follow ups and check ins (6, 12, 18, 24, and 30 month) were completed through web conference and/or phone calls in addition to online surveys. The final data collection for experimental and control groups from all sites will be complete by Summer 2023.

Detailed 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 (note that an optional 13th session on secondary transition planning can be offered if ASSIST is being delivered to families of youth who are in high school).

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 autism 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 autism. The investigators will test this hypothesis by randomly assigning parents of transition-aged youth with autism (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 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 autism, 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 autism that can be disseminated through state and local agencies across the nation.

Basic Information
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Recruitment & Eligibility
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Study & Design
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Trial Locations

Study Timeline

• Study First Submitted: 2019-10-09
• Study First Submitted QC: 2019-11-20
• Study First Posted: 2019-11-22
• Study Start: 2020-01-03
• Status Verified: 2023-05
• Last Update Submitted: 2023-05-23
• Last Update Posted: 2023-05-25
• Primary Completion: 2024-05-30
• Study Completion: 2024-05-30

Recruitment & Eligibility

• Status: ACTIVE_NOT_RECRUITING
• Sex: All
• Target Recruitment: 180

Inclusion Criteria

Not provided

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Exclusion Criteria

Not provided

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Study & Design

• Study Type: INTERVENTIONAL
• Study Design: PARALLEL

Arm && Interventions

Group	Intervention	Description
ASSIST intervention group	ASSIST	This group will attend the 12 sessions of the ASSIST training program (one 2-hour session per week for 12 weeks).
Control: Written materials only group	ASSIST	This informational control group will receive the ASSIST binder and all written materials developed for the program on the same schedule as the treatment group but will not attend the group sessions. After the treatment group is treated and follow up data is collected for comparison between treatment and control, the control group will have the option to take the ASSIST training program.

Primary Outcome Measures

Name	Time	Method
Treatment Target: Change in Parental Empowerment Scale	Baseline to 3-month post-intervention	Examine whether ASSIST participation increases the intervention target of parental empowerment measured using the Family Empowerment Scale (FES). The 34-item questionnaire measures the extent to which parents feel empowered across three dimensions: family, the service system; and the larger community and political environment. Items are rated on a 5-point Likert Scale from 1= not at all true to 5 = very true. The total score can range from 34 to 170, with higher scores indicating greater empowerment.
Treatment Target: Change in Advocacy Skills and Comfort Scale	Baseline to 3-month post-intervention	Examine whether ASSIST participation increases the intervention target of parent advocacy skills measured by the Advocacy Skills and Comfort Scale (ASC). The 10-item measure assesses the degree to which parents feel comfortable and skilled in advocating for their offspring with ASD. Response options range from 1 = not at all to 5 = excellent. The total score can range from 10 to 50, with higher scores indicating more skills/comfort in advocating for their offspring.
Change in Advocacy Activities Scale	Baseline to 12-month post-intervention	Examine whether ASSIST participation increases the intervention target of parent advocacy activities. The 16-item instrument measures how frequently parents spend time in advocacy activities for the son/daughter with ASD. The response options range from 1 = not at all to 4 = very often. The total score can range from 16 to 64, with higher scores indicating greater parent participation in advocacy activities.
Treatment Target: Change in Parental Knowledge about adult services questionnaire	Baseline to 3-month post-intervention	Examine whether ASSIST participation increases the intervention target of parental knowledge about adult service systems. A questionnaire based on a measure developed for the Volunteer Advocacy Program Transition (VAP-T) will be used to evaluate parental knowledge about adult services. The questionnaire consists of 22 multiple-choice questions asking for factual information about adult disability services and the adult disability service system. The total score can range from 0 to 22. Higher scores indicate greater knowledge of the adult disability service system.
Change in Access to Services Interview: Number of services the family is receiving	Baseline to 6-month, Baseline to 12-month post intervention	Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2) the investigators will collect data (via a semi-structured interview) on total number of services that the family is receiving.
Change in Access to Services Interview: Number of services the family applied for	Baseline to 6-month, Baseline to 12-month post intervention	Test whether parent participation in the ASSIST intervention leads to increase access to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2), the investigators will collect data (via a semi-structured interview) on total number of services that the family applied for.
Post-Secondary Youth Outcomes	Baseline to 6-month, Baseline to 12-month post intervention	Test whether parent participation in the ASSIST intervention leads to increase in post-secondary vocational and educational participation for youth with ASD. The Vocational Index will be used to gather information on employment and post-secondary educational programs that youth with ASD are attending / attended 6 months after the intervention. The Vocational Index will be administered via structured interview.

Secondary Outcome Measures

Name	Time	Method
Goal Attainment	Baseline to 12-month post-intervention	Goal Attainment Scaling (GAS) will be used to measure the extent to which individualized goals identified in the person-centered planning session have been obtained. Goals are selected from a goal bank that includes 5 categories: Employment \& Post-Secondary Education, Daily living, Social and Spirituality, Healthy Living, and Safety \& Security. These goals are customized by parent and youth. The investigators will collect information on the youth's goals' progress status.
Other Characteristics of Employment/Post-Secondary Educational Position: Hours Spent in Activity	Baseline to 6-month, Baseline to 12-month, Baseline to 24-month, and Baseline to 30-month post intervention	The Vocational Index will be used to gather information on employment and post-secondary educational (PSE) programs that youth with ASD are attending/attended before and after the ASSIST intervention. The Vocational Index will be administered via structured interview.; Hours Spent: Test whether parent participation in ASSIST leads to increase in employment and PSE participation for youth. The investigators will collect total number of hours per week spent in these activities.
Change in Advocacy Skills and Comfort Scale	Baseline to 12-month, and Baseline to 18-month post-intervention	Examine whether ASSIST participation increases the intervention target of parent advocacy skills measured by the Advocacy Skills and Comfort Scale (ASC). The 10-item measure assesses the degree to which parents feel comfortable and skilled in advocating for their offspring with ASD. Response options range from 1 = not at all to 5 = excellent. The total score can range from 10 to 50, with higher scores indicating more skills/comfort in advocating for their offspring.
Social Participation Youth Outcomes	Baseline to 12-month post-intervention and Baseline to 30-month post-intervention	Test whether parent participation in the ASSIST intervention leads to increase in social participation for youth with ASD. Questions developed to measure social participation will be used to measure the social participation achievements of the youth participants before and after ASSIST per parent-report. This measure consists of 10 items with a 5-point Likert scale ranging from 0 = Less than yearly or never to 4 = Several times a week. The total score can range from 0 to 40, with higher scores indicating greater social participation for the youth with ASD.
Change in Access to Services Interview: Unmet service needs	Baseline to 6-month, Baseline to 12-month, Baseline to 24-month, and Baseline to 30-month post intervention	Test whether parent participation in the ASSIST intervention leads to decrease in unmet service needs for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2), the investigators will collect data (via a semi-structured interview) on total number of unmet service needs that the family is experiencing / experienced.
Change in Access to Services Interview: Barriers to service receipt	Baseline to 6-month, Baseline to 12-month, Baseline to 24-month, and Baseline to 30-month post intervention	Test whether parent participation in the ASSIST intervention leads to decrease in barriers to services for youth with ASD transitioning from high school to adulthood. Using questions developed for the National Longitudinal Transition Study-2 (NLTS-2), the investigators will collect data (via a semi-structured interview) on total number of barriers to services that the family is experiencing / experienced.
Other Characteristics of Employment/Post-Secondary Educational Position: Fit	Baseline to 6-month, Baseline to 12-month, Baseline to 24-month, and Baseline to 30-month post intervention	The Vocational Index will be used to gather information on employment and post-secondary educational (PSE) programs that youth with ASD are attending/attended before and after the ASSIST intervention. The Vocational Index will be administered via structured interview.; Fit: Test whether parent participation in ASSIST leads to increase in youth satisfaction and degree of fit for their interest and skills in employment and PSE participation for youth. The investigators will collect information on if the job/position/program is a good fit for youth.
Satisfaction with Life Scale	Baseline to 12-month post-intervention and Baseline to 30-month post-intervention	The Satisfaction with Life Scale (SLS) is a short 5-item measure of an individual's subjective quality of life. The questionnaire asks parents to think about their youth and rate their agreement with the 5 statements on a 7-point scale, from 1 (Strongly Disagree) to 7 (Strongly Agree). The SLS scale allows participants to integrate and weigh these domains in whatever way they choose.
Other Characteristics of Employment/Post-Secondary Educational Position: Length of Time/Stability	Baseline to 6-month, Baseline to 12-month, Baseline to 24-month, and Baseline to 30-month post intervention	The Vocational Index will be used to gather information on employment and post-secondary educational (PSE) programs that youth with ASD are attending/attended before and after the ASSIST intervention. The Vocational Index will be administered via structured interview.; Length of Time/Stability: Test whether parent participation in ASSIST leads to increase in employment and PSE stability for youth. The investigators will collect total number of youth activities.
Change in Parental Empowerment Scale	Baseline to 12-month, Baseline to 18-month, Baseline to 30-month post intervention	Examine whether ASSIST participation increases the intervention target of parental empowerment measured using the Family Empowerment Scale (FES). The 34-item questionnaire measures the extent to which parents feel empowered across three dimensions: family, the service system; and the larger community and political environment. Items are rated on a 5-point Likert Scale from 1= not at all true to 5 = very true. The total score can range from 34 to 170, with higher scores indicating greater empowerment.
Change in Parental Knowledge about adult services questionnaire	Baseline to 12-month, Baseline to 18-month post-intervention	Examine whether ASSIST participation increases the intervention target of parental knowledge about adult service systems. A questionnaire based on a measure developed for the Volunteer Advocacy Program Transition (VAP-T) will be used to evaluate parental knowledge about adult services. The questionnaire consists of 22 multiple-choice questions asking for factual information about adult disability services and the adult disability service system. The total score can range from 0 to 22. Higher scores indicate greater knowledge of the adult disability service system.

Trial Locations

Locations (3)

University of Illinois at Urbana-Champaign; 🇺🇸 Chicago, Illinois, United States

Vanderbilt University Medical Center; 🇺🇸 Nashville, Tennessee, United States

Waisman Center at University of Madison-Wisconsin; 🇺🇸 Madison, Wisconsin, United States