Overview of Telehealth & Technology for Individuals with ASD and Their Families

1. Overview of Telehealth & Technology for Individuals with ASD and Their Families Dr. Lou Vismara Consultant, Sen. Darrell Steinberglouis.vismara@sen.ca.gov Ph: (916) 651-4189 Fx: (916) 327-8867

2. Technology & Innovations in the ‘Digital Age’ Definitions and Concepts • Interactive Distance Education(case conference; didactic; training; virtual “hands-on”) • Asynchronous Distance Education(lectures; pre-recorded information) • Web-based Information • Asynchronous “Store-and-Forward”(images; data; evaluations; audiovisual clips) • Remote Communications • Registries & Data Management Implementation: Planning & Strategic Approaches • Resource & need assessment • Strategic & operational plan for technology-based program • Evaluate “technology” and other telehealth platforms • Integration of “technology” with other programs & services • Information evaluation & outcomes assessment

3. How are technology and innovations being used in today’s healthcare environment? Tele-Healthcare (categories) Real-time Interactive Services Remote Monitoring Store-and-Forward General health care delivery • Electronic Health Records • Health Information Exchange • Clinical decision support • Clinical Education • Patient Support & Education • Pharmacy & laboratory systems • Electronic medical records • Disaster response support Specialist care delivery Experimental services

4. Quick Facts about Tele-Healthcare: 77% of families have internet access 80% of internet users gather health information online(specific diseases; treatments; doctors; hospitals) Underutilized: < 10% of California consumers ~ telehealth session Only 13% of medical practices use electronic health records V.A. telehealth program for vets with chronic conditions reduced hospital admissions by 19% and total bed days of care by 25% California prisons provided 9,000 telehealth consultations : >$4 M savings Diabetes outpatient visits reduced by 49% Congestive heart failure hospitalization costs reduced by 47.5% Tele-medicine annual savings: $4.2 B nationally; $511 M California

5. What are impacts of technology and innovations on today’s healthcare outcomes? • Increases access to healthcare services • Improves healthcare outcomes • Reduces healthcare costs • Improves disparities in providers • Improves training & education of providers • Improves supports for patients & families • Improves organizational productivity • Helps the environment

6. Why do we need innovative programs for the evaluation and treatment of ASD? Increased demand for autism services Autism = 1 in 110 (>70% increase from prior 2002 Limited number professionals (<5,000 BCBA~ASD experience)Limited collaboration and integration Unclear treatment paths & responsibilities Disparities in services Parents & caregivers are often “traumatized” Shrinking budgets “insanity”: keep doing the same thing and expect a different outcome

7. Overview of Assistive Technology & ASD(“Telepractice Review” by M. Boisvert; Developmental Neurorehabilitation, Dec. 2010; 13(6) 423-432) Definition: Any item, equipment, or product that is used to increase, maintain, or improvefunctional capabilities of individuals with ASD Functional Classification • Communication skills • Social interaction skills • Attention skills • Motivation skills • Organizational skills • Academic skills • Self-help skills • Independent daily functioning skills • Understanding of environment Delivery of Services & Programs No discussion of facilitated or augmented communication

8. The U.C. Davis MIND InstituteApplications of Technology & Innovative Programs Aparent-founded& inspired research institute dedicated to finding: the cause(s), better treatments and ultimately a cure(s) for autism and other neurodevelopmental disorders Includes 48 senior researchers &faculty, 86 research fellows 38 major research projects 270 employees 160 volunteers

9. U.C. Davis Center for Health Technologywww.ucdmc.ucdavis.edu/cht/“Enhancing Mental health Services for Children with ASD in Rural Communities”www.media.americantelemed.org/conf/2008/Presentations Overview of Telehealth Tertiary care center & target communities Practical considerations for implementation of services Telehealth-enabled ASD training/services Principles of culture, ethics, legal &professional considerations Recommendations for Reviewing Websites: Authority Accuracy Objectivity Comprehensive & inclusive Current & Up-to-date

10. The MIND Institute Early Start Denver Model Lab Mission of the ESDM Program • To understand patterns of growth and change in young children with ASD & other disorders. • To prevent or minimize the disability through early detection, early intervention, and family support. • To prepare for careers in research & clinical care • To increase public awareness and knowledge Research Projects • Intensive Treatment for Toddlers with Autism (Early Steps) • Initial Investigation of Prevention of ASD in Infants at Risk (Infant Start) • Remote ESDM: Expanding the Reach of Toddler-Treatment in ASD

11. The MIND Institute Early Start Denver Model Distance Intervention Project Based on ESDM curriculum & teaching approach(attention; motivation; sensory-social; play; dyadic;non-verbal & verbal communication; imitation; speech) Computers/laptops web camerasInitial evaluation; specific goals; 12 week program Video conference parent training: 1/hour/week(review; parent-child play; feedback; new skill; practice) Final Assessment & Comparison with Center-Based Therapy

12. Results of the MIND InstituteESDM Distance Intervention Program • High degree of fidelity (6 hours) • High degree of parental satisfaction • Wider range of observed activities • Achieved 95% of goals • > joint attention, social & shared interests • Verbal: (spontaneous) pre=3.44/ post=29.9 (prompted) pre=3.87/ post=9.43 • Vocabulary: pre= 107.6/post=237.1 • Adaptive behavior (Vineland) pre=77/post=82 • No differences from center-based therapy

13. The MIND Institute ESDMQuality of Participation & Outcomes Involves: Quality of parent-child sharing

14. Parents Click on Selected Topic

15. The MIND Institute Virtual Reality LabDr. Peter Mundy PRELIMINARY STUDY: • 3-D simulated classroom • Nine avatar peers • Multitasking activities • Controlled interventions PRELIMINARY RESULTS: • Joint attention~learning • Joint attention improves >age • Joint attention delayed with HFA • Joint attention/HFA improved post virtual training

16. The U. C. Davis MIND Institutewww.ucdmc.ucdavis.edu/mindinstitute/ MIND Videos Distinguished Lecture SeriesMinds Behind the MIND Lecture SeriesSummer Institute on Neurodevelopmental DisordersSpecial Lectures and ConferencesMIND Educational VideosIn the CommunityVideos By Topic RESOURCESDisabilities and ConditionsAdulthood & TransitionAdvocacyAssistive Technology DevelopmentEarly InterventionEducation Family Resource CentersHealth & WellnessInternational ResourcesLocal, State, & FederalOccupational TherapyRegional CentersResearch Speech & LanguageSports & RecreationSupport GroupsVideos-MIND InstituteOther Services

17. The MIND Institute Tele-Autism ProgramMajor Goals & Objectives • Technology based “system of care” for ASD   • Access, comfort, efficacy, and satisfaction (clinical & research)  • Establish “telecompetence” • Video-conferencing • Multi-media platforms • Written/video learning modules • “Store & forward” technology • Data management & Multi-disciplinary communication • Communities of practice • Resource information center • New therapeutic modalities Process of adopting technology • Knowledge • Persuasion •  Decisions • Implementation  • Confirmation

18. Computer-Assisted Interventions Software programs • Drill & practice • Tutorial • Improved language & social interactions • Increased motivation • Off-computer activities Keys to success • Predictability • Animation • Multiple exemplars • Variety in methods • Non-repetitive trials • Customization Possible pitfalls: • Generalization • Boredom &/or frustration • Limited research

19. Autism Learning Platform

20. Examples of Proprietary Companies • TeachTown Corp.Software treatment ABA program • Over 500 lessons for children • video game rewards • Platform for synchronization between home and school and therapists office; progress reporting, communication/notes • Tools for rapid development of new content • Expert mode to customize curriculum • Animated Speech Corp. • Team Up with Timo is a language learning suite that features an engaging animated tutor to teach • Vocabulary lessons • Stories and related games to teach narrative skills and language in context • Lesson Creator: • A tool for teachers, parents and therapists to create individualized vocabulary lessons • Lesson Exchange: enables posting and exchanging of lessons

21. What Does TeachTown Offer to Classrooms? TeachTown products teach academic & social skills required to be successful in Pre-K, Kindergarten and 1st grade • TeachTown: Basics • A research-based, computer-aided instructional software program • Uses evidence-based best practices from Applied Behavior Analysis (ABA) • Includes 500 on computer lessons with 300 highly motivating off computer activities to promote generalization • Teaches thousands of concepts that improve • performance in six key learning domains • TeachTown: Social Skills • A video modeling-based curriculum • Infuses engaging animated characters that • teach socially valid skills in each episode • The targeted skill in each episode is further • developed through a series of lesson plans, • classroom activities, and homework assignments • The animated characters become another voice in the classroom to support teachers

22. What is the Scientific Data to Support Efficacy? A US Department of Education funded study with LAUSD: During this 3-month study TeachTown students had significant gains compared to control groups

23. Web-based Curriculum & Technology • Standardize the delivery of research-based services • Provide training, collaboration & supervisionacross multiple staff, families and geographic locations • Multi-media & interactive formats • Supplements existing resources • Cost-effectively manage the increased demand • Proprietary CompaniesRethink Autism (www.rethinkautism.com)Center for Autism & Related Disorders (www.centerforautism.com)

25. CARD eLearning™is a 40-hour online training course designed to facilitate effective intervention for children with autism. Completely web based. • Tool for training therapy staff • Teaches ABA procedures for treating autism • Narrated presentations provide video demonstrations • Self-guided and go at your own pace • Online note taking • Quizzes track progress of each module • Passing final exam results in a certificate of completion • Continuing education units available for this training Technology to Train Professionals

26. Technology to Assess & Treat ASD Skills™is a treatment management program for comprehensive assessment, curriculum, and progress-tracking. • Assessment with age milestones • 4,000 lesson activities and tens of thousands of targets • Covers all areas of child development • Assessment links directly to customizable lesson plans • Includes printable materials, worksheets, and data sheets • Tracks/Graphs assessment results and treatment progress • Multidisciplinary approach allows the entire treatment team to evaluate the effects of other treatments, life events, and challenging behaviors on child progress

27. Child Data Authoring System Home Clinic or School Synchronization between multiple systems of care

28. There is an “App” for that Application software, also known as an application or an "app", is computer software designed to help the user to perform specific tasksApp manipulates text, numbers, or graphics Classification of apps: • Information worker (accounting programs) • Content access (web browser; media player) • Entertainment (video games) • Educational (references; learning software) • Enterprise infrastructure (database; business workflow) • Simulation (flight; driving; emergency) • Media development (editing; animation; simulation; 3-D) • Product engineering (design; program testing; editing) Over 140,000 apps for iPad (“work, play, & everything in between”) Google search “autism app”: >10,700,000 results

29. General classification of autism “apps” • Speech; language; communication • Basic Education • Specific learning tasks • Visual learning • Augmented communication devices • Data collection; behavioral therapy supports • Social skills • Improve eye contact & physical skills • Schedules & transitions • Games and fun • Caregiving • Miscellaneous

30. Autism “Apps” Websites: www.autismspeaks.org/family-services www.autismepicenter.com www.modelmekids.com www.squidalicious.com www.itunes.apple.com/us/app/autism www.snapps4kids.com www.hackingautism.org

31. Hacking Autism Website: “Idea Gallery”www.hackingautism.org Examples of >300 concepts submitted Health / Wellness: Job chart or progress chart. Check list of chores and tasks. Basic tutorials on brushing teeth, potty training, buckling seat belts, crossing the street, etc. Behavioral: an app that teaches my autistic son to use his napkin and not his shirt - his fork and not his fingers. Also, one that teaches him to try a new food... can say ' no thank you' in a nice calm voice instead of saying 'NO EGGS!' in a loud, scary voice Basic Education: Handwriting app that allows them to trace letters and write whole sentences - not just a flashcards app. Speech / Communication: An app that helps reinforce spoken and sign vocabulary and share by particular sign variants, gestures and behaviors with caregivers. Fun: i would like to see an app that would not only be fun but would teach a child with autism basic everyday skills like dressing or potty training or how to deal with crowds and situations that they may face day to day

36. Innovations for ASD & Behavioral Sciences • Behavior Capture ™ • Behavior Connect™ • Telemetric monitoring • EEG & other brain monitoring systems • Automated facial expression detection systems • Real-time data & pattern recognition algorithms • Autonomic nervous system monitoring

37. Applying Futuristic Applications to the Diagnosis & Treatment of ASD This will be the wave of the future Change is going to come Multimedia Medical Record Video Capture EMR physiologic monitoring & data feedback

38. Autism, Technology, & Public Policy SB 946 (Steinberg): Autism Behavioral Treatment Health Insurance Mandate AB 415 (Logue): Telehealth Advancement Act • Updates terminology • Includes asynchronous (store & forward) • Includes email & telephone services • Provides for telehealth coverage of services • Eliminates “barrier” requirement • Eliminates “informed consent” requirement SB 764 (Steinberg): Autism Telehealth Program

39. “The only constant in life is change” “Never doubt that a small group of committed people can change the world. Indeed, it is the only thing that ever has.” Margaret Mead Adapting Innovations in the ‘Digital Age’ to Improve the Lives of Individuals with ASD & Other Learning Differences