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| Name | Class |
|---|---|
| University of Illinois at Urbana-Champaign | OTHER |
| University of Wisconsin, Madison | OTHER |
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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.
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| ASSIST intervention group | Experimental | This group will attend the 12 sessions of the ASSIST training program (one 2-hour session per week for 12 weeks). |
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| Control: Written materials only group | Other | 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. |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| ASSIST | Behavioral | The ASSIST program is a 12-week advocacy training to educate parents of youth with autism about the adult service system (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). It is a group training, comprised of didactic instruction, family-sharing activities, case studies, and group discussions. The ASSIST program for the proposed study will be directed at each site by an experienced Program Facilitator from the community with knowledge about group processes, person-centered planning, and adult service systems, who will be coached by a member of the study team. The ASSIST program will be delivered in full partnership with the local disability community. In most sessions, the Program Facilitator will be aided by community content experts who present the specifics of each topic. |
| Measure | Description | Time Frame |
|---|---|---|
| Treatment Target: Change in Parental Empowerment Scale | 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. | Baseline to intervention-end, up to month 10 |
| Treatment Target: Change in Parental Knowledge About Adult Services Questionnaire | 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. | Baseline to intervention-end, up to month 10 |
| Treatment Target: Change in Advocacy Skills and Comfort Scale | 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 overall score is calculated by averaging all items and can range from 1 to 5, with higher scores indicating more skills/comfort in advocating for their offspring. | Baseline to intervention-end, up to month 10 |
| Change in Advocacy Activities Scale | 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. |
| Measure | Description | Time Frame |
|---|---|---|
| Social Participation Youth Outcomes | 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. |
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Inclusion criteria include:
Exclusion criteria include:
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| Name | Affiliation | Role |
|---|---|---|
| Julie Lounds Taylor, PhD | Vanderbilt University Medical Center | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University of Illinois at Urbana-Champaign | Chicago | Illinois | 60007 | United States | ||
| Vanderbilt University Medical Center |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| Background | Burke,MM, Goldman SE, Hart MS, Hodapp RM. Evaluating the Efficacy of a Special Education Advocacy Training Program: Evaluating the Efficacy of Advocacy Training. Journal of Policy and Practice in Intellectual Disabilities, 13(4), 269-276, 2016. | ||
| Background | Koren PE, DeChillo N, Friesen, BJ. Measuring empowerment in families whose children have emotional disabilities: A brief questionnaire. Rehabilitation Psychology, 37(4), 305-321, 1992. | ||
| Background | Sanford C, Newman L, Wagner M, Cameto R, Knokey AM, Shaver D. The Post-High School Outcomes of Young Adults with Disabilities up to 6 Years after High School: Key Findings from the National Longitudinal Transition Study-2 (NLTS2). NCSER 2011-3004. National Center for Special Education Research, 2011. | ||
| 27739234 | Background |
| Label | URL |
|---|---|
| Transitions Lab Website | View source |
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The data reported only includes parents who were enrolled in the study. Youth did not receive the intervention. For the purposes of primary and secondary outcome measure reporting youth were not considered enrolled and data was not collected
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| ID | Title | Description |
|---|---|---|
| FG000 | ASSIST Intervention Group | This group will attend the 12 sessions of the ASSIST training program (one 2-hour session per week for 12 weeks). ASSIST: The ASSIST program is a 12-week advocacy training to educate parents of youth with autism about the adult service system (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). It is a group training, comprised of didactic instruction, family-sharing activities, case studies, and group discussions. The ASSIST program for the proposed study will be directed at each site by an experienced Program Facilitator from the community with knowledge about group processes, person-centered planning, and adult service systems, who will be coached by a member of the study team. The ASSIST program will be delivered in full partnership with the local disability community. In most sessions, the Program Facilitator will be aided by community content experts who present the specifics of each topic. |
| FG001 | Control: Written Materials Only Group | 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. ASSIST: The ASSIST program is a 12-week advocacy training to educate parents of youth with autism about the adult service system (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). It is a group training, comprised of didactic instruction, family-sharing activities, case studies, and group discussions. The ASSIST program for the proposed study will be directed at each site by an experienced Program Facilitator from the community with knowledge about group processes, person-centered planning, and adult service systems, who will be coached by a member of the study team. The ASSIST program will be delivered in full partnership with the local disability community. In most sessions, the Program Facilitator will be aided by community content experts who present the specifics of each topic. |
| Title | Milestones | Reasons Not Completed | ||||||||||||||||||||||||||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Overall Study |
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The data reported only includes parents who were enrolled in the study. Youth did not receive the intervention. For the purposes of primary and secondary outcome measure reporting youth were not considered enrolled and data was not collected.
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| ID | Title | Description |
|---|---|---|
| BG000 | ASSIST Intervention Group | This group will attend the 12 sessions of the ASSIST training program (one 2-hour session per week for 12 weeks). ASSIST: The ASSIST program is a 12-week advocacy training to educate parents of youth with autism about the adult service system (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). It is a group training, comprised of didactic instruction, family-sharing activities, case studies, and group discussions. The ASSIST program for the proposed study will be directed at each site by an experienced Program Facilitator from the community with knowledge about group processes, person-centered planning, and adult service systems, who will be coached by a member of the study team. The ASSIST program will be delivered in full partnership with the local disability community. In most sessions, the Program Facilitator will be aided by community content experts who present the specifics of each topic. |
| Units | Counts |
|---|---|
| Participants |
|
| Title | Description | Population Description | Parameter Type | Dispersion Type | Unit of Measure | Calculate Percentage | Denominator Units Selected | Denominators | Classes |
|---|---|---|---|---|---|---|---|---|---|
| Age, Categorical | Count of Participants |
| Type | Title | Description | Population Description | Reporting Status | Anticipated Posting Date | Parameter Type | Dispersion Type | Unit of Measure | Calculate Percentage | Time Frame | Units Analyzed | Denominator Units Selected | Arm/Group Information | Denominators | Classes | Analyses | |||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Primary | Treatment Target: Change in Parental Empowerment Scale | 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. | Posted | Mean | Standard Deviation | score on a scale (change score) | Baseline to intervention-end, up to month 10 |
|
36 months
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| ID | Title | Description | Deaths (Affected) | Deaths (At Risk) | Serious Events (Affected) | Serious Events (At Risk) | Other Events (Affected) | Other Events (At Risk) |
|---|---|---|---|---|---|---|---|---|
| EG000 | ASSIST Intervention Group | This group will attend the 12 sessions of the ASSIST training program (one 2-hour session per week for 12 weeks). ASSIST: The ASSIST program is a 12-week advocacy training to educate parents of youth with autism about the adult service system (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). It is a group training, comprised of didactic instruction, family-sharing activities, case studies, and group discussions. The ASSIST program for the proposed study will be directed at each site by an experienced Program Facilitator from the community with knowledge about group processes, person-centered planning, and adult service systems, who will be coached by a member of the study team. The ASSIST program will be delivered in full partnership with the local disability community. In most sessions, the Program Facilitator will be aided by community content experts who present the specifics of each topic. |
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| Term | Organ System | Source Vocabulary | Assessment Type | Notes | Statistical Information |
|---|---|---|---|---|---|
| Unanticipated Problem | Social circumstances | Systematic Assessment | Breech in confidentiality that may involve risk. Study team member emailed 34 participants utilizing cc rather than bcc which allowed email addressed to be shared. This was not related to intervention. This was related to data collection. |
We could not analyze whether treatment targets mediate the relationship between ASSIST participation and youth outcomes of employment/PSE, social participation, and service access (specific aim 3), as we did not detect a treatment effect.
The results of the trial were likely impacted by the COVID-19 pandemic.
| Title | Organization | Phone | Extension | |
|---|---|---|---|---|
| Julie Lounds Taylor, PhD, principal investigator | Vanderbilt University Medical Center | 615-343-5659 | julie.l.taylor@vumc.org |
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| Type | Includes Protocol | Includes SAP | Includes ICF | Document Label | Document Date | Document Uploaded Date | Document File Name |
|---|---|---|---|---|---|---|---|
| Prot | Yes | No | No | Study Protocol | Aug 10, 2023 | Jun 6, 2024 | Prot_000.pdf |
| SAP | No | Yes | No | Statistical Analysis Plan | Jun 1, 2022 | Jun 21, 2024 | SAP_001.pdf |
| ICF | No | No | Yes | Informed Consent Form | Oct 4, 2019 | Jun 6, 2024 | ICF_002.pdf |
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| ID | Term |
|---|---|
| D000067877 | Autism Spectrum Disorder |
| D001321 | Autistic Disorder |
| ID | Term |
|---|---|
| D002659 | Child Development Disorders, Pervasive |
| D065886 | Neurodevelopmental Disorders |
| D001523 | Mental Disorders |
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| ID | Term |
|---|---|
| D007316 | Insemination, Artificial, Heterologous |
| ID | Term |
|---|---|
| D007315 | Insemination, Artificial |
| D027724 | Reproductive Techniques, Assisted |
| D012099 | Reproductive Techniques |
| D013812 | Therapeutics |
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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.
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Research personnel collecting follow-up data are masked.
|
| Baseline to 12-month post-intervention, up to month 21 |
| Change in Access to Services Interview: Number of Services the Family Applied for | 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 the total number of services that the family applied form (e.g., supplemental security income [SSI], vocational rehabilitation services, housing choice voucher). The number of services families can apply for ranges from 0 to 9. | Baseline to 6-month post-intervention, up to month 15; Baseline to 12-month post-intervention, up to month 21 |
| Change in Access to Services Interview: Number of Services the Family is Receiving | 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. For this analysis, services are disaggregated into two types: government (e.g., supplemental security income [SSI], vocational rehabilitation services, housing choice voucher) and direct services (e.g, speech-language pathology, respite care, mental health services). The number of government services the family can receive ranges from 0 to 9. The number of direct services the family can receive ranges from 0 to 21. | Baseline to 6-month post-intervention, up to month 15; Baseline to 12-month post-intervention, up to month 21 |
| Post-Secondary Youth Outcomes | 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. This measure is only applicable to youth who have exited high school. | Baseline to 6-month post-intervention, up to month 15; Baseline to 12-month post-intervention, up to month 21 |
| Baseline to 12-month post-intervention, up to month 21 |
| Change in Access to Services Interview: Unmet Service Needs | 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. | Baseline to 6-month post-intervention, up to month 15; Baseline to 12-month post-intervention, up to month 21 |
| Access to Services Interview: Barriers to Service Receipt | Test whether parent participation in the ASSIST intervention is associated with fewer 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 the number of barriers to services experienced. | Baseline to 12-month post-intervention, up to month 21 |
| Nashville |
| Tennessee |
| 37203 |
| United States |
| Waisman Center at University of Madison-Wisconsin | Madison | Wisconsin | 53558 | United States |
| Lounds Taylor J, Adams RE, Bishop SL. Social participation and its relation to internalizing symptoms among youth with autism spectrum disorder as they transition from high school. Autism Res. 2017 Apr;10(4):663-672. doi: 10.1002/aur.1709. Epub 2016 Oct 14. |
| 22466690 | Background | Taylor JL, Seltzer MM. Developing a vocational index for adults with autism spectrum disorders. J Autism Dev Disord. 2012 Dec;42(12):2669-79. doi: 10.1007/s10803-012-1524-x. |
| 28070786 | Background | Taylor JL, Hodapp RM, Burke MM, Waitz-Kudla SN, Rabideau C. Training Parents of Youth with Autism Spectrum Disorder to Advocate for Adult Disability Services: Results from a Pilot Randomized Controlled Trial. J Autism Dev Disord. 2017 Mar;47(3):846-857. doi: 10.1007/s10803-016-2994-z. |
| 16367493 | Background | Diener E, Emmons RA, Larsen RJ, Griffin S. The Satisfaction With Life Scale. J Pers Assess. 1985 Feb;49(1):71-5. doi: 10.1207/s15327752jpa4901_13. |
| 34232419 | Result | Taylor JL, Pezzimenti F, Burke MM, DaWalt LS, Lee CE, Rabideau C. Development, Feasibility, and Acceptability of a Nationally Relevant Parent Training to Improve Service Access During the Transition to Adulthood for Youth with ASD. J Autism Dev Disord. 2022 Jun;52(6):2388-2399. doi: 10.1007/s10803-021-05128-z. Epub 2021 Jul 7. |
| 36162047 | Result | Burke MM, Cheung WC, Li C, DaWalt L, Segal J, Taylor JL. Parental Perceptions of Service Access for Transition-Aged Youth With Autism During COVID-19. Intellect Dev Disabil. 2022 Oct 1;60(5):369-381. doi: 10.1352/1934-9556-60.5.369. |
| BG001 | Control: Written Materials Only Group | 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. ASSIST: The ASSIST program is a 12-week advocacy training to educate parents of youth with autism about the adult service system (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). It is a group training, comprised of didactic instruction, family-sharing activities, case studies, and group discussions. The ASSIST program for the proposed study will be directed at each site by an experienced Program Facilitator from the community with knowledge about group processes, person-centered planning, and adult service systems, who will be coached by a member of the study team. The ASSIST program will be delivered in full partnership with the local disability community. In most sessions, the Program Facilitator will be aided by community content experts who present the specifics of each topic. |
| BG002 | Total | Total of all reporting groups |
| Participants |
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| Age, Continuous | Mean | Standard Deviation | years |
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| Sex: Female, Male | Count of Participants | Participants |
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| Ethnicity (NIH/OMB) | Count of Participants | Participants |
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| Race (NIH/OMB) | Count of Participants | Participants |
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| Region of Enrollment | Number | participants |
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| OG001 | Control: Written Materials Only Group | 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. ASSIST: The ASSIST program is a 12-week advocacy training to educate parents of youth with autism about the adult service system (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). It is a group training, comprised of didactic instruction, family-sharing activities, case studies, and group discussions. The ASSIST program for the proposed study will be directed at each site by an experienced Program Facilitator from the community with knowledge about group processes, person-centered planning, and adult service systems, who will be coached by a member of the study team. The ASSIST program will be delivered in full partnership with the local disability community. In most sessions, the Program Facilitator will be aided by community content experts who present the specifics of each topic. |
|
|
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| Primary | Treatment Target: Change in Parental Knowledge About Adult Services Questionnaire | 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. | Of the participants who completed Follow-Up 1, one participant in the intervention group and one person in the control group did not complete this measure, giving us n=87 for the intervention group and n=87 for the control group. | Posted | Mean | Standard Deviation | score on a scale (change score) | Baseline to intervention-end, up to month 10 |
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| Primary | Treatment Target: Change in Advocacy Skills and Comfort Scale | 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 overall score is calculated by averaging all items and can range from 1 to 5, with higher scores indicating more skills/comfort in advocating for their offspring. | Posted | Mean | Standard Deviation | score on a scale (change score) | Baseline to intervention-end, up to month 10 |
|
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|
|
| Primary | Change in Advocacy Activities Scale | 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. | Of the participants who completed Follow-Up 3, eleven participants in the intervention group and three participants in the control group did not complete this measure, giving us n=70 for the intervention group and n=76 for the control group. | Posted | Mean | Standard Deviation | score on a scale (change score) | Baseline to 12-month post-intervention, up to month 21 |
|
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| Primary | Change in Access to Services Interview: Number of Services the Family Applied for | 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 the total number of services that the family applied form (e.g., supplemental security income [SSI], vocational rehabilitation services, housing choice voucher). The number of services families can apply for ranges from 0 to 9. | The data analysis only includes parents who were enrolled in the study. Youth did not receive the intervention. N reflects the number of participants who completed the measure at each corresponding time point. | Posted | Mean | Standard Deviation | services | Baseline to 6-month post-intervention, up to month 15; Baseline to 12-month post-intervention, up to month 21 |
|
|
|
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| Primary | Change in Access to Services Interview: Number of Services the Family is Receiving | 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. For this analysis, services are disaggregated into two types: government (e.g., supplemental security income [SSI], vocational rehabilitation services, housing choice voucher) and direct services (e.g, speech-language pathology, respite care, mental health services). The number of government services the family can receive ranges from 0 to 9. The number of direct services the family can receive ranges from 0 to 21. | The data analysis only includes parents who were enrolled in the study. Youth did not receive the intervention. N reflects the number of participants who completed the measure at each corresponding time point. | Posted | Mean | Standard Deviation | services | Baseline to 6-month post-intervention, up to month 15; Baseline to 12-month post-intervention, up to month 21 |
|
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| Primary | Post-Secondary Youth Outcomes | 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. This measure is only applicable to youth who have exited high school. | The number analyzed reflects the number of participants who completed the measure at each corresponding time point. | Posted | Count of Participants | Participants | Baseline to 6-month post-intervention, up to month 15; Baseline to 12-month post-intervention, up to month 21 |
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| Secondary | Social Participation Youth Outcomes | 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. | Of the participants who completed Follow-Up 3, twelve participants in the intervention group and eight participants in the control group did not complete this measure, giving us n=69 for the intervention group and n=71 for the control group. | Posted | Mean | Standard Deviation | score on a scale (change score) | Baseline to 12-month post-intervention, up to month 21 |
|
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| Secondary | Change in Access to Services Interview: Unmet Service Needs | 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. | The data analysis only includes parents who were enrolled in the study. Youth did not receive the intervention. N reflects the number of participants who completed the measure at each corresponding time point. | Posted | Mean | Standard Deviation | unmet needs | Baseline to 6-month post-intervention, up to month 15; Baseline to 12-month post-intervention, up to month 21 |
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| Secondary | Access to Services Interview: Barriers to Service Receipt | Test whether parent participation in the ASSIST intervention is associated with fewer 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 the number of barriers to services experienced. | Of the participants who completed Follow-Up 3, eleven participants in the intervention group and three participants in the control group did not complete this measure, giving us n=70 for the intervention group and n=76 for the control group. | Posted | Mean | Standard Deviation | barriers | Baseline to 12-month post-intervention, up to month 21 |
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|
| 0 |
| 91 |
| 0 |
| 91 |
| 17 |
| 91 |
| EG001 | Control: Written Materials Only Group | 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. ASSIST: The ASSIST program is a 12-week advocacy training to educate parents of youth with autism about the adult service system (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). It is a group training, comprised of didactic instruction, family-sharing activities, case studies, and group discussions. The ASSIST program for the proposed study will be directed at each site by an experienced Program Facilitator from the community with knowledge about group processes, person-centered planning, and adult service systems, who will be coached by a member of the study team. The ASSIST program will be delivered in full partnership with the local disability community. In most sessions, the Program Facilitator will be aided by community content experts who present the specifics of each topic. | 0 | 94 | 0 | 94 | 17 | 94 |
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Not provided
Not provided
| D008919 | Investigative Techniques |
| D007314 | Insemination |
| D012098 | Reproduction |
| D055703 | Reproductive Physiological Phenomena |
| D012101 | Reproductive and Urinary Physiological Phenomena |
| Change Score (12 month-Baseline) |
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Outcome Variable: Number of services family applied for (12 month post intervention)
| Regression, Linear |
Linear regression controlled for study site, cohort, and baseline value of the measure. |
| .355 |
| Slope |
| -0.11 |
| 2-Sided |
| Superiority |
| Government Services Change Score (12 month - Baseline) |
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| Direct Services Change Score (6 month - Baseline) |
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| Direct Services Change Score (12 month - Baseline) |
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Outcome Variable: Number of government services the family is receiving (12 month post intervention)
| Regression, Linear |
Linear regression controlled for study site, cohort, and baseline value of the measure. |
| .573 |
| Slope |
| -0.10 |
| 2-Sided |
| Superiority |
| Outcome Variable: Number of direct services the family is receiving (6 month post intervention) | Regression, Linear | Linear regression controlled for study site, cohort, and baseline value of the measure. | .430 | Slope | -0.23 | 2-Sided | Superiority |
| Outcome Variable: Number of direct services the family is receiving (12 month post intervention) | Regression, Linear | Linear regression controlled for study site, cohort, and baseline value of the measure. | .391 | Slope | 0.27 | 2-Sided | Superiority |
| Number of participants who had no activities at baseline but activities at 12month post intervention |
|
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Outcome Variable: Whether participants were engaged or not engaged in vocational/educational activities (12 month post intervention) |
| Regression, Logistic |
Logistic regression controlled for study site, cohort, and baseline value of the measure. |
| .296 |
| Slope |
| 0.64 |
| 2-Sided |
| Superiority |
| Change Score (12 month - Baseline) |
|
|
Outcome Variable: Number of unmet service needs (12 month post intervention)
| Regression, Linear |
Linear regression controlled for study site, cohort, and baseline value of the measure. |
| .678 |
| Slope |
| -0.13 |
| 2-Sided |
| Superiority |