Mind the Gap (AIR-B3)

We will recruit 140 (35 per site) families that will be referred by pediatricians, school staff, family resource centers, early intervention agencies, DDS or self-referred using study referral form, phone or web based referral system. The referral will include consent to be contacted by the research team. All families will complete the screening survey by phone (Section 19.2, item 3.1) with a member of the research team. This will be the only survey that will determine eligibility. If eligible to participate, the participants will be asked to give an oral consent. The oral consent will allow the research team to randomize the family to either the Resource Only Group or the Peer Coaching Group. For both conditions, a written consent will be later obtained when the research team meets with the families for the intake survey and filling out the measures: Demographic, Family Empowerment Scale, Caregiver Agency Questionnaire, Caregiver Autism Knowledge Questionnaire, Caregiver Stigma Scale and a Satisfaction Survey only at end of study. Cultural Capital Survey will only be used once at the intake survey meeting.

Parents will have access to ParentSquare, a safe, secure platform for program-to-parent and parent-to-parent communication. ParentSquare has a registration feature where parents can complete forms and sign up for courses and training modules and to broadcast training. Parents can choose to be notified via text, email with reminders or updates through the app. Messages can be private or broadcasted to larger group. There is also a document feature to allow shared access between parent and coach of parent goals and progress between calls and visits. Each site will be responsible for monitoring communication of their participants in Parent Square along with Drexel University.

Participants will also include up to 40 peer coaches (10 per site) who will be trained to provide coaching to families for 5 months as a family gains access to services. Peer Coach Inclusion criteria: (1) parent of a child with autism or other similar developmental disorder; (2) a child over 9 years old and at least 5 years post-diagnosis; (3) some experience working with parents and/or understanding of the service system and (4) fluent in English and/or Spanish.

Intervention Resource only. Families randomized to the resource only condition will have access to training materials in web-based and paper formats. The will receive the internet address to access web-based trainings, handouts and materials, including instructions for each activity and they will receive a binder that includes the information that is available on line so they can access the information even if they do not have internet access Families in the resource only condition will not have access to a peer coach through the program. They will not have access to the on-line support community.

Peer Coaching Condition. Families randomized to peer coaching will receive assistance with navigating the training program and accessing the system from a trained peer parent coach. Peer coaches will, as much as possible, be culturally and language-matched with the participant family. Families in this condition will receive a call from their peer coach who will set up an initial, in-person meeting either in-home, clinic or community setting depending on the participant preference. Based on the goal setting interview the peer coach and the family will choose initial goals to complete in the first week, which will include (1) completion of a training (typically the What is ASD? Training will be completed first); (2) completion of one activity related to service access (e.g., phone access; call to service provider; form completion); and (3) one self-care activity. A timeline for goals will be developed together based on the family needs. Peer coaches will have a guide for rating the importance of training and materials for the family based on the interview, and a guide which will identify triggers (e.g. challenging behavior, safety concerns) to increase the level of care. Peer coaches will set up a weekly call or video conferences (based on parent preference), and monthly in person visit with the family to assess goal progress, provide information, and set up subsequent goals and/or additional support if needed. Monthly visits and weekly calls will continue for 12 visits up to 4 months). If parents choose to meet via video conference, a secure, University approved method will be used by coaches (e.g., Zoom, Skype, Webex). Three of the calls will be audio recorded for research purposes and to provide feedback to the coaches. Calls will then be reduced to monthly for 9 months. Parent participants can contact the peer coach at any time as well. Peer coaches will have a script and materials for each call which will cover a specific topic identified with the family. Peer coaches will have bi monthly supervision.

Peer Coach Training. Peer coaches will be hired or referred from local parent support agencies . Compensation will be specific to each site. Peer coaches are parents of children with ASD diagnosed at least 5 years ago, fluent in English or Spanish and have some experience helping other families of children with ASD.

Peer coaches will attend four, 3-hour training sessions in the use of the intervention materials. They will have a chance to practice using the materials and will learn about issues related to safety and how to work with families. They will complete citi training and additional training and role play in the confidentiality. Training will include learning to use Parentsquare and role playing interviewing and discussing topics with families. Coaches will have access to scripts for each potential topic and resources to address family needs. Parent engagement in the intervention will also be measured by (1) enrollment in sessions; (2) attendance at sessions and peer coach calls/meetings; (3) accessing on-line materials; (4) completion of on-line trainings; and (5) project attrition.

Peer coaches will be expected to provide a 24-hour notice if they need to cancel a meeting or session. They will also be expected to reschedule missed appointments. Also, peer coaches will not be paid for missed appointments. If the peer coaches misses 3 meetings in a row without proper cancellation, a member of the research team will have to resume his/her activities.