Integrating AAC and Natural Speech: Population Group One David Beukelman October 6, 2007

1. Integrating AAC and Natural Speech: Population Group OneDavid BeukelmanOctober 6, 2007

2. ALS: Background • Age of onset--20s to 60s • Initial spinal symptoms live 5 times longer than those with initial bulbar symptoms • Life expectance is much longer if one opt s for invasive ventilation • Artificial nutrition increases life expectancy somewhat, increases quality of life.

3. Phase I: Monitoring Speech Performance • Preserving natural speech effectiveness--to meet communication needs • Education about AAC • Predicting speech deterioration • Referral for AAC assessment

4. ALS: AAC Acceptance & UseNebraska ALS Database (N = 140) • 95% unable to speak prior to death • 96% accept AAC (6% delay; 4% reject) • All, who accept, use until within a month or two of death • Length of use is remarkably similar for those with initial spinal (23 months) or bulbar symptoms (26 months) (under-estimates because 15% continued to use while ventilated) • Communication functions documented (Mathy,et al, 2000)

5. Acceptance by Gender

6. ALS: Speech Deterioration Delayed referral for AAC assessment remains a primary intervention issue.

7. Intelligibility X Months Post Diagnosis

8. One Person’s Experience Sept.: 97% intelligible, rate 90 wpm Nov.: 75% intelligible, rate 68 wpm Feb.: 33% intelligible, rate 52 wpm May.: 6.8% intelligible, rate 36 wpm

9. Phase II: Assess, Recommend, Implement • Document communication needs • Assess social network (plans) • Determine medical intervention plans • Mechanical ventilation • Artificial nutrition • Alternative diagnoses • Selection high-low-tech options • Preparation of AAC facilitators

10. AAC Outcomes • 49 Individuals • 15 ERICA Users

11. ALS: Support • AAC Technology Instruction • Persons with ALS--3.5 hours • AAC facilitators--2 hours • AAC Facilitators • Typically family members • Non-technical backgrounds

12. AAC Facilitators • Wife 32% • Daughter 28 • Husband 9 • Self 7 • Friend 4 • Nursing 4 • Daughter-in-law 3 • Son 3 • SLP 3 • Brother 2 • Granddaughter 2 • Grandson 2 • Mother 1 • Sister 1

13. ALS: AAC Technology Donation Patterns

14. Guillian-Barre’ • Background • Meeting Today’s Needs • Selection of Low or high tech options • Instruction of Caregivers/Facilitators • Practice • Planning for tomorrow • Medical course/intervention • Living arrangements • Discussion: John Video

15. Myesthenia Gravis • Background • Meeting Today’s Needs • Selection of Low or high tech options • Instruction of Caregivers/Facilitators • Practice • Planning for tomorrow • Medical course/intervention • Living arrangements • Discussion: Video

16. Brainstem Impairment: Demographics • 0 - 25% recover functional speech (depending on study) • 4 Clinical Profiles • Motor impairment--but not Locked-in Syndrome • LIS, but transitioning to brainstem motor involvement • Chronic LIS • Top-of-Basilar Syndrome

17. Phase One: Initial Assessment • Basic assessment • Residual speech • Early speech potential • Yes-No Response • Nurse call systems

18. Phase Two: Early Intervention • Low-tech AAC options • Strategies for use • Functional communication • Motor control training • Speech intervention

19. Phase Three: Formal Assessment • Speech assessment • AAC assessment

20. Brainstem: AAC Acceptance and Use • 3 Published Reports of Groups of Individuals • Use both high and low tech AAC • Of high tech AAC, approximately half direct selection and half scanning. • An undocumented group remains “Locked-in” using eye-gaze and signals (dependent scanning)

21. LIS: Restoring Head Movement • Safe Laser Project (Fager et al, 2006) • 6 participants • Initially, all communication with eye movements • After intervention, • 3 developed sufficient head control to access AAC technology • 2 continue motor learning intervention • 1 discontinued--health and psychological issues

22. Future Directions • Motor learning to restore head movement • Received funding for 15 LIS participants • Currently recruiting participants to begin in about 6 to 12 months.

23. Motor Speech Disorders in Children • Childhood Apraxia of Speech • Cerebral Palsy • Supporting Communication • Resolving Breakdowns • Enhancing Social and Academic Participation • Learning Language • Supplementing Speech • Supporting Speech Practice • Provide speech models • Focus scope of practice at home or classroom

24. Background: Cerebral Palsy • Summary of Hustad Results (2006) Cerebral Palsy • 40 Participants with C.P. • Those unable to speak received AAC • Those with “any” natural speech did not receive AAC

25. Background: AAC Use & Intelligibility of Children with CAS Ball, 1999 N = 36 children with CAS M age = 6 years, 1 month M intelligibility = 44% Intelligibility Range = 0 - 97% N = 1 child using AAC

26. A snapshoot of AAC & Speech in CAS • Study looking at 3 children with CAS ages 4 to 6 • Communication within group activities: music, book, snack, play • Treatment conditions included: baseline, sign language and cued speech, and SGD (Ball & Strading, 2006)

27. Results • Nonstandard communication attempts (grunts, gestures, nonspecific vocalizations) decreased as signing and SGDs were used in treatment • Nonstandard communication attempts were highest during baseline and lowest when SGDs were used

28. Communicative Utterances Baseline Sign BL AAC Post

29. Results • Communicative utterances showed the greatest increase with SGDs • Specific communicative attempts (true words) were highest when SGDs were used • Number of different words used was lowest at baseline and increased with each treatment approach used

30. Results • Number of different words used was highest with SGDs • Multiple word utterances occurred more with SGD use • More initiations were seen when SGDs were used

31. Discussion • Children with CAS need AAC to help them communicate • more effectively (standard) • larger vocabulary • more complexity • more independently • wider variety of communication partners

32. Use of AAC systems by Children with DAS (Cumley, 1997) Participants: Severe phonological disorder and/or DAS N = 16 Children Age: 3 yrs, 5 months to 7 yrs, 5 months

33. Procedures DAS children with a range of intelligibility were taught to use an AAC technique Children engaged in play situations Interactions were video recorded and analyzed

34. Research Design ABA Design NO AAC Board Available Treatment Condition with AAC Board Present Post-treatment Condition with AAC Board Present

35. Relationship between AAC use and intelligibility of natural speech Measure High AAC Users Low AAC Users Intelligibility 27% 50% Goldman/Fristoe 19% 61% 12 words from Phonological Screen -Preschool of the Assesment of Phonological Process-Revised (1986) were used as stimulus items for intelligibility measurement

36. Results: Increase comprehensible messages Increased successful communication repairs Children with most severe speech disorders used AAC most frequently AAC use did not decrease the number of speech attempts AAC use reduced the number of gestures. AAC used primarily to resolve communication breakdowns.

37. Speech Practice • Practice often • Practice accurately

38. Information Resources • http://www.aac-rerc.com • AAC-RERC Webcasts • AAC-RERC Funding • http://aac.unl.edu • Barkley AAC Website (University of Nebraska-Lincoln)