Overview of Research Project top
In October of 2006, the Celeste Foundation completed a one-year study, funded by the United States Department of Education, that investigated ways in which interactive video technology could assist families with a young child with autism.
In this program, families and professionals were linked together with an interactive video system. The system enabled families to receive live in-home support from professionals located at remote sites. Using the interactive video, professionals provided advice, training, and other services directly into the home at the times when they were most relevant and needed.
The project enrolled families in Iowa, Florida and New Jersey who had a child between the age of two and five with autism. Their involvement began with a brief stay at the National Institute of Telehealth (NIT) in Mt. Dora, Florida, for intensive program development. They then returned home with both a plan for services and a videoconferencing device that provided a link between their home and the professionals who helped them in Mt. Dora.
Selection Process top
The Celeste Foundation used a four-step process to select participants, using tools that included:
(1) an on-line questionnaire,
(2) a behavioral profile,
(3) a telephone interview, and
(4) a face-to-face interview.
Initially, potential participants completed an on-line questionnaire located on the foundation’s website. This form provided the research team with general information about the child and family. Successful online applicants completed a behavioral profile pertaining to the child’s behavior, medical history, and previous treatment efforts. This profile provided the researchers with baseline information related to the child’s autism diagnosis and current treatment. Applicants whose behavioral profile indicated potential participation were asked to conduct a telephone interview with the research team, information from which was reviewed and then assessed by the team. Lastly, members of the clinical team visited families in person who were selected through the first phases. In-depth, face-to-face interviews occurred in the families’ homes to discern the family’s capacity to participate for the 6-12 month study period (depending on time of admission). Families were kept apprised on the selection process and informed of the final decision in a timely manner.
Attendance at the NIT
Families selected for the research project were provided the following arrangements and accommodations at no cost:
- Airfare for up to four persons to the National Institute of Telehealth, Mt. Dora, Florida
- Accommodation in a fully furnished, two-bedroom home
- Rental car
Most importantly, during their stay at the NIT, families were afforded a full range of clinical services.
Treatment Methods top
During the family’s stay at the National Institute of Telehealth, a behavioral treatment and education program was developed for the child that aimed to improve the child’s behavioral, social, communicative, and independent living skills. The individualized plan was developed by a multidisciplinary team consisting of all relevant professionals which included a behavior analyst, educational specialist, speech pathologist, and psychologist. The clinical team utilized a combination of the following treatment modalities.
- Applied Behavior Analysis
- Positive Behavior Support
- Responsive Interaction
- Routines-Based Intervention
- Visual and Environmental Supports
Remote Service Delivery top
A state-of-the-art interactive video system was used to link the families and professionals. This technology:
- Utilized a standard computer for in-home installation
- Operated on residential-class broadband internet connection
- Featured an easy-to-use videoconferencing program capable of real-time, high definition video
- Delivered loud and clear audio with public and private capabilities
- Used multipoint technologies that allowed the invitation of more than one endpoint
- Facilitated centralized management and administration features that ensured high availability and reliability
- Integrated data collection capabilities to suit professional needs
- Utilized contemporary encryption devices, strong firewall technologies, and state-of -the -art intrusion detection software to ensure information security
To view an example of telehealth service delivery, click here.
Delivery of Telehealth Services top
After the families left the NIT, they received continuous support and assistance from their team of telehealth professionals. These professionals helped the families administer the treatment programs developed for their child.
- During the first three weeks after the family returned home, the family received telehealth services based on an individualized treatment and educational program developed by the professionals and families. A sample weekly schedule included:
- Seven hours of behavior analytic services
- One hour of psychology services
- Two hours of speech pathology
- After the initial three weeks, telehealth services were provided up to five hours per week and centered around the recommendations of the clinical team.
From the results, several lessons were learned:
(1) This study reaffirmed that parents, if empowered with trainable skills and afforded encouragement, are the best interventionists for their special needs child(ren). As described earlier, the curriculum developed for this project featured a multi-modal approach based on the principles of five complementary, evidence-based practices to help parents understand and intervene with their child's behavior. In essence, the study was a train-the-trainer model that used real time videoconferencing technologies as a means for professionals to reinforce training lessons, and to great effect.
(2) The study confirmed that telehealth systems are more than capable of providing the access, clarity, specificity and interactivity required by professionals to train, assist and support parents with a child with autism.
(3) Extremely high ratings were assigned to the technological components of the model. Likewise, parents considered these technologies and the remote interactions they facilitated to be useful, effective and desirable enhancements to traditional service delivery models.
(4) In addition to providing an effective means for enabling professionals and families to collaborate on child objectives, the results indicate that having a telehealth system installed in the home may reduce family stress and contribute to an improvement in a family’s perception of their overall quality of life. The presence of these systems can act as a sort of lifeline for families new to the mystery of autism who felt isolated by a lack of support and understanding. We learned that having support available literally at the touch of a button helped parents to feel confident, optimistic and empowered to assist their child. The importance of this ancillary effect of the telehealth model as a reducer of family stress should not be underestimated.
This study demonstrated that telehealth technologies may be used to effectively provide behavioral, educational, and therapeutic services to young children with autism. Furthermore, the research demonstrated that telehealth services can provide satisfactory support to reduce family stress by enhancing parent and caregiver skills and confidence. The future of telehealth promises great advancements in both technology and service delivery.