Funding

This project seeks to address challenges faced by geographically remote families in accessing effective intervention services for their young children diagnosed with an autism spectrum disorder (ASD). The lack of access can have devastating effects on child-outcomes as well as the overall quality of family life. In order to address challenge, this project is developing a training program to teach parents of children with an ASD how to implement empirically-based interventions with their children. The development of this program is proceeding across four phases: 1) Initial content and system development and informational focus groups; 2) formative evaluation; 3) Quasi-experimental assessment and system refinement; and 4) final analysis and preparation for dissemination. Currently this project has completed Phase 1 and 2 (focus groups and formative evaluation), and is now in Phase 3. In Phase 3, parents of children with Autism are using online tutorials to learn general information and concepts related to an intervention or treatment protocol followed by a telemedicine clinic intervention session. During the intervention session parents practice the techniques discussed in that week’s online tutorials with their child while receiving guidance and immediate feedback from trained intervention coaches. Program effectiveness is being evaluated based on: level of parental knowledge and skill fluency; child level of disability (e.g. the ICF) and behavior; and reported family quality of life. In addition, participants will complete exit surveys and interviews to elicit feedback regarding how the program could be improved and any problems they experienced. Families participating in Phase 3 are selected based on child’s age (18 months to five years), diagnosis (ASD), time of diagnosis (within the last 6 months) and are assigned to baseline condition using a multiple-baseline design. Families that do not meet the inclusion criteria are given resources local to where they live, or other online family-based educational materials. Intervention components will be introduced to study families in a multiple baseline design. These families are compensated for their participation in the project. In order to assess the sustainability of the project, following Phase 3, six additional families will be recruited to participate in the outreach telemedicine clinic from a community-based telemedicine site (Phase 4). These families will not be paid to participate, allowing for an initial assessment of the sustainability of this model past the end of funding. Given positive results, this technique will be disseminated to other institutions serving individuals with developmental disabilities in other regions of the country.

The prevalence of autism in America is reaching epidemic proportions. The U.S. Department of Education has documented almost a 220% increase in the last 12 years (DOE, 2003). As with any other chronic and debilitating disorder, early, intensive and comprehensive intervention is of paramount importance. Unfortunately, the excessive cost associated with these interventions prevents many children from benefiting from them. While training parents to implement effective interventions can significantly reduce the cost of services, limitations imposed by geographical location or transportation prohibits many families from accessing appropriate training. The lack of access can have devastating effects on child-outcomes as well as the overall quality of family life. Research has suggested that intensive early intervention achieves the best developmental outcomes (Lovaas & Smith, 1988; Dawson & Osterling, 1997; New York Department of Health, 1999; National Research Council, 2001), but without intensive early intervention, nearly 90% of these children will require some type of residential placement when they are adults (Lovaas, 1987). This project seeks to address this access and training deficit by evaluating the Online and Applied System for Intervention Skills (OASIS) Training Program, a program that uses a Research-to-Practice Outreach Training model to teach parents of children with an autism spectrum disorder (ASD) how to implement empirically-based interventions with their children. The evaluation of the OASIS program will include two studies. The purpose of Study 1 is to a) conduct a between-group experimental analysis of the effectiveness of the final iteration of the OASIS training program developed during a previously funded development project, and b) conduct a within subject analysis of the effects of OASIS on parent knowledge and skill fluency with implementation of behavioral techniques with their child, family quality of life, and child language and social engagement post treatment and during follow-up measures. Specifically, the following objectives will be addressed: Objective 1:  Do intervention parents have different levels of parent knowledge, skill fluency, family quality of life, parent stress, and satisfaction with child treatment following intervention than control parents? Objective 2:  Is the intervention effective for increasing parent knowledge, skill fluency, family quality of life, and satisfaction with child treatment as well as decreasing parent stress compared to baseline levels?  How do the parent variables listed above at 9 and 18 month follow-up compare to those same variables immediately post intervention?  Objective 3:  Do intervention children have different child language and socialization skills following treatment than do control children? Objective 4:  Is the intervention effective for increasing child language and socialization skills compared to baseline levels?  How do child language and socialization skills at 9 and 18 month follow-up compare to immediately post intervention? Participants will include 18 experimental families and 18 control families for the between-subjects comparison and 36 families (total) who will receive the within-subjects comparison (control families receive the treatment following the post intervention between-group comparison). The purpose of Study 2 is to assess the long-term impact of the OASIS program on parents and children who previously completed training. Specifically, the following objective will be assessed: Objective 1: continued collection of family outcome, intervention-specific, and child outcome data on families who have experienced the OASIS intervention as a part of the intervention development phase in order to obtain preliminary information about long term effects.  The participants for Study 2 will be the eight families who participated in the pilot study for the development of the OASIS program. Given positive results, this technique will be disseminated to other institutions serving individuals with developmental disabilities in other regions of the country.

The prevalence of autism in America is reaching epidemic proportions with prevalence rates for Autism Spectrum Disorders (ASD) cited as occurring in 1 in every 150 children (CDC, 2007). Within the Hispanic community, Avila and Blumberg (2008) reported a lower prevalence of Hispanic children with autism however, within the Hispanic population, significantly higher rates of autism were found in English-speaking households as compared to Spanish-speaking households. While research suggests that intensive early intervention produces the best outcomes (Lovaas, 1987), the cost associated with these interventions along with the language and cultural barriers prevent many Hispanic children from accessing early intervention. While training parents to implement effective interventions can significantly reduce the cost of services, limitations imposed by language barriers prohibits many families from accessing appropriate training. Hispanics are now the largest ethnic minority group in the U.S. (Borrego et al., 2006) and have historically been less likely to utilize health services than other groups (Martinez & Eddy, 2005) perhaps in part to their limited access to appropriate social and mental health services (Liptak et al., 2008). Further, few interventions have been evaluated with culturally diverse populations (Bernal, 2006). This lack of access to culturally sensitive programs delivered in parents’ primary language can have devastating effects on child-outcomes as well as the overall quality of family life. This project seeks to address this access and training deficit by adapting the Online and Applied System for Intervention Skills (OASIS) Training Program for use with parents who speak Spanish and have a child with an ASD to teach them how to implement empirically-based interventions with their child. The development of this program will proceed across five phases: 1) Initial project development 2) translation and adaptation of existing training resources for Hispanic caregivers; 3) formative evaluation (FE) and revision; 4) full program evaluation and revision; and 5) final analysis and preparation for dissemination. Phase II development will be informed by consumer and stake-holder feedback through the use of a focus group to determine critical aspects of cultural-specific training content. Following the focus group, Phase III FE will be conducted with eight participants in which each one completes sequential iterations of adapted training modules and provides feedback for further iterations (e.g., p1 completes mod. 1 and provides feedback; p2 completes mod. 1 and 2 and provides feedback on both, etc.). Guided by results from the FE, the complete program will be revised. In Phase IV, three Hispanic parents of children with ASD will complete the full OASIS program. During training, parents will practice the techniques discussed in that week’s online tutorials with their child while receiving guidance and immediate feedback from a bilingual clinician with a background in behavior analysis and trained to implement OASIS. Program effectiveness will be evaluated based on: parental knowledge and skill fluency; child adaptive behaviors; and reported family quality of life. In addition, families will complete exit surveys to elicit feedback regarding program improvement and any problems they experienced, particularly regarding cultural and/or language barriers experienced. Families selected for the Phase IV evaluation stage will come from a Hispanic background and have Spanish as their primary language. They will also be selected based on child’s age (4 to 7 years old), diagnosis (ASD), and time of diagnosis (within the last year). Families that do not meet the inclusion criteria will be referred to other agencies. Intervention components will be introduced to study families in a multiple baseline design. All families will be paid for their participation in the project. In Phase V, final analyses of data collected during Phase IV will be conducted. Given positive results, this technique will be disseminated to other institutions serving individuals with developmental disabilities and who speak Spanish in other regions of the country.

The Kansas Center for Autism Research and Training in partnership with the Center for Child Health and Development and key stakeholders in the community will follow standard implementation guidelines to disseminate OASIS to the broader community of service providers working with families impacted by autism through the development of the necessary infrastructure and training requirements. This training program will focus on NIDILRR’s outcome domains of community living and participation by training parents to effectively teach and manage behaviors of their child with autism so to improve the child’s level of independence and overall wellbeing within the community. The goal of this project is to improve the delivery and quality of training services available to families, specifically those families that otherwise would not have access to services. The objectives of this project are to 1) collaborate with key health-care partners to create the infrastructure needed to enable service providers to receive compensation for implementation of OASIS, 2) to develop the processes necessary to disseminate OASIS to the behavioral health care community to include appropriate, timely, and cost effective training on the use of OASIS, and 3) train service providers from key agencies to implement OASIS.

We anticipate the outcomes of this project to be 1) usable billing codes for professionals to use for OASIS implementation, 2) OASIS Coaches at key agencies serving children with autism, 3) successful reimbursement for OASIS, 4) increases in parenting behaviors that have a beneficial impact on 5) child outcomes. The expected products are marketing and outreach materials, caregiver training, OASIS Coach Training, and a partnership with key insurers as a referral services for families

Through our partnerships with previous NIDILRR project participants, this project will follow standard implementation guidelines to scale-up OASIS to the broader community. This will focus on NIDILRR’s outcome domains of community living and participation by training previous NIDILRR-funded OASIS service providers to train others (train-the-trainer) to effectively use the OASIS model to teach parents to improve the child’s level of independence and overall well-being within the community.

The goals of this project are 1: Engagement, 2: Capacity Building/Certification, 3: Community Support, 4: Collaboration, and 5: Workforce support. These goals are designed to meet the project objective to train and provide technical assistance to organizations/key agencies that serve/function as Certified OASIS training sites and to work with these organizations to:

Objective 1: develop a credentialing process to train Certified OASIS trainers

Objective 2: “train the trainers” by certifying previously-trained OASIS participants as trainers to train new coaches, and;

Objective 3:  identify organizations within existing systems to further the uptake of OASIS.

We anticipate the outcomes of this project to be increasing 1) parent and child access to evidence-based practice, 2) the number of individuals at key agencies that serve as OASIS trainers, 3) the number of OASIS coaches at agencies serving children with autism and their families, and 4) development of a web-based portal for agencies, coaches, and families to access. The expected products are marketing and outreach materials, caregiver training, OASIS Coach Training, and a partnership with key Certified OASIS sites as a referral services for families impacted by autism.