CNOW & The Celeste Foundation's Early Intervention Study

In 2004, autism diagnoses were on the rise and affected 1 out of 125 children.  A significant amount of research was dedicated to early intervention evaluating the effects of intensive, one-on-one therapy during ages of 0-5 to alleviate the symptoms of autism. Interventions for children with autism are recommended to occur frequently, intensively and early in the child's life. 

CNOW had evaluated the use of its videoconferencing technologies across various populations and across a variety of settings.  However, its use had not yet been investigated specifically in the area of Early Intervention in children with autism. As a result, CNOW and The Celeste Foundation partnered up to test the use of telemedicine videoconferencing technologies in the homes of children with autism and their families. 

Background

The Celeste Foundation was a 501(c)3 organization that conducted and enabled research to evaluate the disparities experienced by  children and adults with special needs.  CNOW provided technical support to this landmark study that investigated ways in which interactive videoconferencing technology can assist families of young children with autism.  Funded by a grant from the U.S. Department of Education, this program linked families and professionals through videoconferencing enabling live in-home support from professionals at remote sites.  Families were located in the following states:

  • Florida
  • New Jersey
  • Iowa

The Study

One of the first investigations of its kind, families and their children with autism between the ages of 2-5 and their families had the ability to access various clinical professionals from the comfort of their homes through remote videoconferencing.  As exemplified in the investigation, families across the nation were able to access a Behavior Analyst, Speech Pathologist, Family Therapist and a Registered Nurse based in Florida through the CNOW system multiple times per week to obtain clinical support and guidance. 

A total of 15 families and 17 children participated in the investigation.  As part of initial caregiver training each family received a week's worth of intensive face-to-face training on behavioral strategies including both pre and post tests on their knowledge.  The families learned strategies and techniques to foster their child's behavioral, social, communicative and adaptive skills.  Upon return to their homes they were provided with telehealth videoconferencing hardware and software that facilitated each session with the clinical professional.  Each week, for between 2-16 hours per week, the multidisciplinary team met with each respective family across the 3 states to aid the caregivers in implementing their child's behavioral program, answer questions and provide familial support. 

The children that participated in the study were assessed in their gains in the following areas:  

  • Communication
  • Engagement
  • Food selectivity
  • Levels of caregiver stress
  • Toilet training (programs were presented to the caregivers to carry out on their own)
  • And more...

Findings

In total, over 4,000 telehealth consultations took place and the results of this study were positive and encouraging.  Satisfaction with the modality of service delivery (from both the clinicians and families) was indicated with high ratings. The families revealed that they felt comfortable receiving services through videoconferencing and the clinical professionals scored that they felt their interactions with families were just adequate as if they were face-to-face.  In addition, caregivers felt empowered with skills they learned each week and children made significant behavioral gains and, in turn, reduced caregiver stress.  

Here are some highlights from the study:

  • 70% of children with toileting protocols were successfully toilet trained
  • Over 200 new words were acquired by all participants
  • Over 100 new foods were introduced to all participants

This modality of treatment was revolutionary for its time and the findings still hold true today: overcoming barriers and providing instant access to treatment to caregivers through telemedicine can improve quality of life while reducing caregiver stress.   

The findings of the collaborative efforts of CNOW and The Celeste Foundation were presented twice at the U.S. Senate hearing on Combating Autism