iCommunication Using Adaptive Technology to Help People Communicate March 5, 2013

1. iCommunication Using Adaptive Technology to Help People CommunicateMarch 5, 2013 Toni Southern, M.Cl.Sc., Reg. CASLPO toni.southern@jmccentre.ca Karin Kouvelas, M.A., Reg. CASLPO karin.kouvelas@jmccentre.ca Augmentative Communication Clinic John McGivney Children’s Centre

2. JMCC’s Mission: To provide rehabilitative services in the Windsor/Essex County Community, enriching the lives of children and youth with disabilities and special needs, by “helping their abilities grow”to their fullest potential.

3. JMCC is part of the Ontario Association of Children’s Rehabilitation Services (OACRS): OACRS represents 21 Children’s Treatment Centres (CTCs) across Ontario CTCs serve 60,000children in each of their designated geographical areas

4. JMCC provides essential services to increasing numbers of children with special needs. • Medical and technological advances are enabling babies and children to survive, but with complications/special needs. • In 1978 the Centre serviced 200 children; today that number has grown to more than 2,300 annually throughout all areas of Windsor and Essex County.

5. JMCC provides essential services to children who face life long challenges that include: • Birth Defects (Spina Bifida) • Neurological conditions (Cerebral Palsy, head Injuries) • Autism • Neuromuscular conditions (Muscular Dystrophy ) • Trauma (post surgery fractures) • Illness (cancer, arthritis) • Cleft lip and/or palate (craniofacial conditions) • Orthopedic/musculoskeletal conditions • Genetic disorders (Down’s Syndrome, chromosome additions/deletions) • Developmental delays • Metabolic conditions • Cardiovascular and respiratory conditions

6. JMCC Programs and Services: • JMCC provides programs and services which are medical, rehabilitative and educational in nature, truly enhancing and enriching the lives of the children and their families, by helping them reach their full potential. • supporting children/youth from birth to age 21. • services are offered in the Centre through • out patient program(s) • JMCC is one of six CTCs to offer an on-site integrated preschool and Section 68 School • in the community through contract agreements including CCAC Home and School Health • JMCC operates under legislation that has established geographical boundaries for CTCs - meaning families cannot go elsewhere to access these publicly funded services despite long local wait times for services.

7. “Every person, regardless of the severity of his/her disabilities, has the right to communicate with others, express everyday preferences and exercise at least some control over his or her daily life. Each individual, therefore, should be given the chance, training, technology, respect and encouragement to do so.”Bob Williams, former U.S. Deputy Assistant Secretary. Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.  ~ Albert Einstein

8. If I were to lose all my possessions except for one, I would save the power of communication, for by it I would soon gain all the rest. • Daniel Webster McFadden (1995) “... to me and others like me being able to communicate puts us into society. It lets us have a voice.”

9. What is communication? • What is speech? • What is language?

10. Communication • Telling people what we want, think, feel. • Getting attention. • Making choices. • Interacting with others. • Asking for help. • Getting information from others. • Reading and writing. • Participating in life.

11. Speech • How we produce sounds. • The quality of our voice. • How the sounds are sequenced to form words.

12. Language • The words we use. • The meaning of our words. • The way we combine words to make sentences. • The reception of language. • There is also the pragmatic aspect of how we combine our language and our speech (tone, inflection and gestures) to influence the meaning of our messages.

13. How do we communicate? • Vocalizations • Body Language • Behaviours • Facial expressions • Pictures • Signs or gestures • Pointing • Speech or speech generating devices • Writing/texting/emailing

14. Possible Communication Difficulties • Congenital or acquired disorders that affect the muscles, nerves or areas within the brain. • Some examples are Cerebral Palsy, ALS, CVA, TBI, autism, syndromes such as Downs or Q22 deletion, motor speech disorders. • Delays in the development of the areas in the brain responsible for speech and language. • Difficulty hearing. • Loss of limbs.

15. Does that mean they can’t communicate? No … • We communicate in many ways – we laugh, cry, we wave our arms and use gestures. • We point or look at what we want. • We use our face or tone of our voice to make a message mean something different. • There are strategies and technologies available to many individuals.

16. What are some of the Barriers that people with communication challenges face? Attitudinal • They are ignored. • They are not spoken to directly. • They are addressed in a condescending manner. • They are shouted at. • They may not be included in decisions. • People may believe that they are drunk or on drugs. • They are assumed to be incompetent.

17. Physical • Their independence may be compromised. • They are not given the necessary time to respond. • They don’t have access to phones/navigating through a phone system. • Discussing account information over the phone can be tricky. (some companies won’t allow another person to talk on their behalf even though they are sitting right next to the person. Some companies won’t allow speaker phones to be used.) • Access to banking/credit cards requiring signatures/PIN may be challenging. • They may require an interpreter or communication aid. • They may not have access to printed materials.

18. What is Augmentative and Alternative Communication (AAC)? • Augmentative Communication is using other ways to communicate if your speech or hand writing is unclear. • People who use augmentative and alternative communication (PWUAAC) may use strategies and/or technology to help them communicate more effectively. • Some examples of augmentative communication include signs, gestures, pictures (including PECS), speech generating devices (talkers) and computers.

19. Myths about AAC

21. Benefits of using AAC • Access to communication. • Control over environment/life/decisions. • Provides a voice. • Access to the community. • Improves relationships with people. • You can say anything to anyone anywhere. • Increased independence.

22. Strategies to Address Barriers • Assume competence. • Be respectful. • Speak directly to the person even if they have an aide or parent with them. • Don’t raise your voice. • Provide increased wait time. • Ask the person to show you how they communicate. Ask if they have tips on how you can use it with them. Do they have a device, do they answer yes/no questions, etc. • If they have a system - allow them to use it.

23. Confirm the message that they have given you to ensure that you have understood it – but don’t question what they have said or decisions they have made. • Offer other ways of giving and getting information – choices, written material, picture supports, email. • Be mindful of the difficulty of the reading material being offered. • Make sure they have access to supportive personnel if necessary. • Offer assistance before giving assistance. • Accept other forms of “signing”, e.g. stamp for their name or a mark. • Keep the above in mind if you are speaking to a PWUAAC on the phone.

24. The Power of Believing Adapted from Pati King-Debaun • Believe that all individuals can communicate and have the right to. • Believe that all individuals have the right to choose and should be given opportunities to do so. • Believe in patience. • Believe each individual has something positive and valuable to share with you. • Believe that you have something positive to give to individuals with severe and multiple disabilities. • Believe that if you believe the individual will believe.

25. AAC Systems

26. AAC Systems • Communication Display/Book • Step by Step • Go Talk • Alt Chat • Dynavox • Vantage • Springboard • ECO • iPad/iPods • other

27. Proloquo2Go • The only app that is authorized by the Ontario Government. • Cost - $189 • Complex dynamic display communication app. • Fully Customizable. • Well promoted by developer – it is the #1 grossing educational app and has been for at least the past year..

28. Challenges and Issues • People are calling us frequently wanting an iDevice without seeing or having information about other options. • Previous experience with iDevices has been found to be detrimental to the use of the device as a communication system. • People who use the idevices are having trouble because they are distracted by the other apps that are built into or added onto the idevice.

29. The device is not accessible to all users – they have difficulty using many of the function buttons or having it reorient when the device is turned. • Because it is a popular device it makes it more prone to theft. • It is not designed for children so it is more fragile than our other devices. • It is not always the most efficient system and it requires a lot of customization to make it work effectively.

30. Considerations for using an App • Caution to look carefully at any app and evaluate it’s merits. • Does it encourage communication growth? • Does it encourage communication vs labeling and requesting and testing? • Think about why you want this app. E.g. it may hold their attention but are they getting anything useful out of it? • Apps are being developed and marketed quickly without the benefit of adequate research and design teams that have been a part of our other devices. They need to be looked at/reviewed with caution.

31. AAC Apps (non ADP) • iCommunicate ($50) • Voice4U ($50) • My Talk ($50) • TouchchatHD ($149) • Grace ($25) • Talk Rocket Go($99) • Verbally (free) • Scene and Heard ($50)

32. Typ-O ($15) • Predictable ($160) • Speak it! ($1.99) - text to speech • Story Kit (free) • Tap to Talk (free) • SmallTalk Aphasia (free) • Pictello ($19) Lots more……

33. iPrompts ($50) • Augieapp ($160) • Comapp ($40) • I Create…Social Skills Stories ($5) • Conversation Coach ($80)

34. Resources for other communication apps can be found at: • http://www.autismspeaks.org/family-services/autism-apps • http://www.asha.org/SLP/schools/Applications-for-Speech-Language-Pathology-Practice/ • http://www.aactechconnect.com/ • http://praacticalaac.org/tag/apps/

35. Summary • People who use Augmentative and Alternative Communication have a lot to say but often require more opportunities and strategies to communicate successfully. • There are many strategies that you can use to increase their success. • There are a variety of systems available – not just iDevices. • PWUAAC face many barriers and unfortunately often do so in silence.

36. References • www.accpc.ca • http://icannews.blogspot.ca/2011_12_01_archive.html • http://praacticalaac.org/praactical/28-ways-to-improve-communication-with-aac-users-in-february/ • Correspondence with Nola Millin -a PWUAAC