Trial Outcomes & Findings for Advocating for Supports to Improve Service Transitions (NCT NCT04173663)
NCT ID: NCT04173663
Last Updated: 2025-01-31
Results Overview
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.
Recruitment status
COMPLETED
Study phase
NA
Target enrollment
185 participants
Primary outcome timeframe
Baseline to 12-month post-intervention, up to month 21
Results posted on
2025-01-31
Participant Flow
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
Participant milestones
| Measure |
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.
|
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.
|
|---|---|---|
|
Overall Study
STARTED
|
91
|
94
|
|
Overall Study
Follow-Up 1 (Intervention-end)
|
88
|
88
|
|
Overall Study
Follow-Up 2 (6 Month Post-intervention)
|
84
|
79
|
|
Overall Study
Follow-Up 3 (12 Month Post-intervention)
|
81
|
79
|
|
Overall Study
Follow-Up 4 (18 Month Post-intervention)
|
79
|
75
|
|
Overall Study
Follow-Up 5 (24 Month Post-intervention)
|
72
|
62
|
|
Overall Study
COMPLETED
|
73
|
64
|
|
Overall Study
NOT COMPLETED
|
18
|
30
|
Reasons for withdrawal
| Measure |
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.
|
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.
|
|---|---|---|
|
Overall Study
Withdrawal by Subject
|
1
|
6
|
|
Overall Study
Lost to Follow-up
|
17
|
24
|
Baseline Characteristics
Advocating for Supports to Improve Service Transitions
Baseline characteristics by cohort
| Measure |
ASSIST Intervention Group
n=91 Participants
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.
|
Control: Written Materials Only Group
n=94 Participants
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.
|
Total
n=185 Participants
Total of all reporting groups
|
|---|---|---|---|
|
Age, Categorical
<=18 years
|
0 Participants
n=5 Participants
|
0 Participants
n=7 Participants
|
0 Participants
n=5 Participants
|
|
Age, Categorical
Between 18 and 65 years
|
87 Participants
n=5 Participants
|
91 Participants
n=7 Participants
|
178 Participants
n=5 Participants
|
|
Age, Categorical
>=65 years
|
4 Participants
n=5 Participants
|
3 Participants
n=7 Participants
|
7 Participants
n=5 Participants
|
|
Age, Continuous
|
51.89 years
STANDARD_DEVIATION 6.64 • n=5 Participants
|
50.28 years
STANDARD_DEVIATION 5.91 • n=7 Participants
|
51.07 years
STANDARD_DEVIATION 6.31 • n=5 Participants
|
|
Sex: Female, Male
Female
|
80 Participants
n=5 Participants
|
86 Participants
n=7 Participants
|
166 Participants
n=5 Participants
|
|
Sex: Female, Male
Male
|
11 Participants
n=5 Participants
|
8 Participants
n=7 Participants
|
19 Participants
n=5 Participants
|
|
Ethnicity (NIH/OMB)
Hispanic or Latino
|
7 Participants
n=5 Participants
|
7 Participants
n=7 Participants
|
14 Participants
n=5 Participants
|
|
Ethnicity (NIH/OMB)
Not Hispanic or Latino
|
84 Participants
n=5 Participants
|
87 Participants
n=7 Participants
|
171 Participants
n=5 Participants
|
|
Ethnicity (NIH/OMB)
Unknown or Not Reported
|
0 Participants
n=5 Participants
|
0 Participants
n=7 Participants
|
0 Participants
n=5 Participants
|
|
Race (NIH/OMB)
American Indian or Alaska Native
|
0 Participants
n=5 Participants
|
0 Participants
n=7 Participants
|
0 Participants
n=5 Participants
|
|
Race (NIH/OMB)
Asian
|
3 Participants
n=5 Participants
|
3 Participants
n=7 Participants
|
6 Participants
n=5 Participants
|
|
Race (NIH/OMB)
Native Hawaiian or Other Pacific Islander
|
0 Participants
n=5 Participants
|
0 Participants
n=7 Participants
|
0 Participants
n=5 Participants
|
|
Race (NIH/OMB)
Black or African American
|
9 Participants
n=5 Participants
|
7 Participants
n=7 Participants
|
16 Participants
n=5 Participants
|
|
Race (NIH/OMB)
White
|
77 Participants
n=5 Participants
|
81 Participants
n=7 Participants
|
158 Participants
n=5 Participants
|
|
Race (NIH/OMB)
More than one race
|
2 Participants
n=5 Participants
|
3 Participants
n=7 Participants
|
5 Participants
n=5 Participants
|
|
Race (NIH/OMB)
Unknown or Not Reported
|
0 Participants
n=5 Participants
|
0 Participants
n=7 Participants
|
0 Participants
n=5 Participants
|
|
Region of Enrollment
United States
|
91 participants
n=5 Participants
|
94 participants
n=7 Participants
|
185 participants
n=5 Participants
|
PRIMARY outcome
Timeframe: Baseline to intervention-end, up to month 10Examine 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.
Outcome measures
| Measure |
ASSIST Intervention Group
n=88 Participants
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.
|
Control: Written Materials Only Group
n=88 Participants
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.
|
|---|---|---|
|
Treatment Target: Change in Parental Empowerment Scale
|
4.93 score on a scale (change score)
Standard Deviation 13.72
|
0.61 score on a scale (change score)
Standard Deviation 14.02
|
PRIMARY outcome
Timeframe: Baseline to intervention-end, up to month 10Population: 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.
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.
Outcome measures
| Measure |
ASSIST Intervention Group
n=87 Participants
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.
|
Control: Written Materials Only Group
n=87 Participants
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.
|
|---|---|---|
|
Treatment Target: Change in Parental Knowledge About Adult Services Questionnaire
|
2.16 score on a scale (change score)
Standard Deviation 3.00
|
0.20 score on a scale (change score)
Standard Deviation 2.33
|
PRIMARY outcome
Timeframe: Baseline to intervention-end, up to month 10Examine 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.
Outcome measures
| Measure |
ASSIST Intervention Group
n=88 Participants
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.
|
Control: Written Materials Only Group
n=88 Participants
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.
|
|---|---|---|
|
Treatment Target: Change in Advocacy Skills and Comfort Scale
|
0.35 score on a scale (change score)
Standard Deviation 0.57
|
0.15 score on a scale (change score)
Standard Deviation 0.55
|
PRIMARY outcome
Timeframe: Baseline to 12-month post-intervention, up to month 21Population: 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.
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.
Outcome measures
| Measure |
ASSIST Intervention Group
n=70 Participants
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.
|
Control: Written Materials Only Group
n=76 Participants
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.
|
|---|---|---|
|
Change in Advocacy Activities Scale
|
-0.84 score on a scale (change score)
Standard Deviation 6.93
|
-1.34 score on a scale (change score)
Standard Deviation 4.76
|
PRIMARY outcome
Timeframe: Baseline to 6-month post-intervention, up to month 15; Baseline to 12-month post-intervention, up to month 21Population: 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.
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.
Outcome measures
| Measure |
ASSIST Intervention Group
n=83 Participants
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.
|
Control: Written Materials Only Group
n=79 Participants
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.
|
|---|---|---|
|
Change in Access to Services Interview: Number of Services the Family Applied for
Change Score (6 month-Baseline)
|
0.07 services
Standard Deviation 0.93
|
0.10 services
Standard Deviation 0.74
|
|
Change in Access to Services Interview: Number of Services the Family Applied for
Change Score (12 month-Baseline)
|
0.08 services
Standard Deviation 1.09
|
0.10 services
Standard Deviation 0.76
|
PRIMARY outcome
Timeframe: Baseline to 6-month post-intervention, up to month 15; Baseline to 12-month post-intervention, up to month 21Population: 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.
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.
Outcome measures
| Measure |
ASSIST Intervention Group
n=83 Participants
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.
|
Control: Written Materials Only Group
n=79 Participants
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.
|
|---|---|---|
|
Change in Access to Services Interview: Number of Services the Family is Receiving
Government Services Change Score (6 month - Baseline)
|
0.52 services
Standard Deviation 1.11
|
0.43 services
Standard Deviation 0.90
|
|
Change in Access to Services Interview: Number of Services the Family is Receiving
Government Services Change Score (12 month - Baseline)
|
0.50 services
Standard Deviation 1.05
|
0.41 services
Standard Deviation 1.08
|
|
Change in Access to Services Interview: Number of Services the Family is Receiving
Direct Services Change Score (6 month - Baseline)
|
-0.07 services
Standard Deviation 1.87
|
-0.33 services
Standard Deviation 2.12
|
|
Change in Access to Services Interview: Number of Services the Family is Receiving
Direct Services Change Score (12 month - Baseline)
|
-0.68 services
Standard Deviation 2.05
|
-0.37 services
Standard Deviation 2.05
|
PRIMARY outcome
Timeframe: Baseline to 6-month post-intervention, up to month 15; Baseline to 12-month post-intervention, up to month 21Population: The number analyzed reflects the number of participants who completed the measure at each corresponding time point.
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.
Outcome measures
| Measure |
ASSIST Intervention Group
n=31 Participants
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.
|
Control: Written Materials Only Group
n=30 Participants
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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|---|---|---|
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Post-Secondary Youth Outcomes
Number of participants who had no activities at baseline but activities at 6 month post intervention
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7 Participants
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4 Participants
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Post-Secondary Youth Outcomes
Number of participants who had no activities at baseline but activities at 12month post intervention
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2 Participants
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5 Participants
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SECONDARY outcome
Timeframe: Baseline to 12-month post-intervention, up to month 21Population: 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.
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.
Outcome measures
| Measure |
ASSIST Intervention Group
n=69 Participants
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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Control: Written Materials Only Group
n=71 Participants
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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|---|---|---|
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Social Participation Youth Outcomes
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0.13 score on a scale (change score)
Standard Deviation 4.38
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-0.72 score on a scale (change score)
Standard Deviation 4.78
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SECONDARY outcome
Timeframe: Baseline to 6-month post-intervention, up to month 15; Baseline to 12-month post-intervention, up to month 21Population: 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.
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.
Outcome measures
| Measure |
ASSIST Intervention Group
n=83 Participants
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.
|
Control: Written Materials Only Group
n=79 Participants
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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|---|---|---|
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Change in Access to Services Interview: Unmet Service Needs
Change Score (6 month - Baseline)
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-0.28 unmet needs
Standard Deviation 2.54
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-0.43 unmet needs
Standard Deviation 2.37
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|
Change in Access to Services Interview: Unmet Service Needs
Change Score (12 month - Baseline)
|
-0.35 unmet needs
Standard Deviation 2.59
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-0.70 unmet needs
Standard Deviation 2.38
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SECONDARY outcome
Timeframe: Baseline to 12-month post-intervention, up to month 21Population: 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.
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.
Outcome measures
| Measure |
ASSIST Intervention Group
n=70 Participants
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.
|
Control: Written Materials Only Group
n=76 Participants
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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|---|---|---|
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Access to Services Interview: Barriers to Service Receipt
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2.66 barriers
Standard Deviation 2.03
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2.71 barriers
Standard Deviation 1.91
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Adverse Events
ASSIST Intervention Group
Serious events: 0 serious events
Other events: 17 other events
Deaths: 0 deaths
Control: Written Materials Only Group
Serious events: 0 serious events
Other events: 17 other events
Deaths: 0 deaths
Serious adverse events
Adverse event data not reported
Other adverse events
| Measure |
ASSIST Intervention Group
n=91 participants at risk
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.
|
Control: Written Materials Only Group
n=94 participants at risk
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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|---|---|---|
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Social circumstances
Unanticipated Problem
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18.7%
17/91 • Number of events 17 • 36 months
|
18.1%
17/94 • Number of events 17 • 36 months
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Additional Information
Julie Lounds Taylor, PhD, principal investigator
Vanderbilt University Medical Center
Phone: 615-343-5659
Email: [email protected]
Results disclosure agreements
- Principal investigator is a sponsor employee
- Publication restrictions are in place