Promoting Independence and FUNction with ADL and Communication Equipment

1. Promoting Independence and FUNction with ADL and Communication Equipment A Philosophy and Practical Applications Presentation

2. Objectives • By being familiar with what is available • And putting up with a mess of philosophical and historical material from Dr. Stefans, AGAIN… • You will become able to set expectations, select and encourage use of effective technologies for specific situations and disabling conditions • Overcoming all barriers with persuasive examples and justifications • “Narrative Research“ • http://www.med.umich.edu/pmr/nrdr/index.htm

3. As a physiatrist you can increase the quality of life for people with physical disabilities by helping them reach goals which they desire and are achievable. To do all of this, you must be able to establish rapport so that you can identify and prioritize goals. Then you teach the patient and the family to acquire the knowledge and skills which will promote achievement of goals and adaptation to disability. As a physiatrist be sensitive, askable, flexible, negotiable, creative, enthusiastic, and sincere. Understand your own values, attitudes, limits, and strengths in order to help others without imposing upon them. Place a high value on humanness. Acknowledge discomfort and pain including your own. Carry a low burden of guilt or envy for the circumstances of other people. Lastly, trust people to accept responsibility for themselves. - Theodore M. Cole M.D., as Chairman, PM&R Department, University of Michigan, Ann Arbor

4. What is Adaptive Technology? Assistive technology (AT) is any kind of device or tool that helps people learn, work, communicate and live more independently.  AT can be very simple and inexpensive, like a modified knife and fork, or it can be very sophisticated and costly, like a computerized speech device.  - Arkansas ICAN website

5. What is “appropriate technology?” From Disabled Village Children, Hesperian Foundation Publications

6. Appropriate Technology • Jaipur leg • Rubber, wood, aluminum • Estimated $28.00-$40.00 cost • Hotchkiss wheelchair • http://maic.jmu.edu/Journal/12.2/notes/prvulov/prvulov.htm • bike parts

7. It’s All About Participation Unique to individual Needs, Wants, and Circumstances “Functional and Fun”

8. Standing wheelchairs

9. Cultural relevance

10. Going potty • Not necessary to wait for walking and talking • Support feet, trunk if needed, reduce size of hole to reduce fear of falling in • How important is it to be out of diapers? – Cindy’s story

11. "She can't/We didn't because..." • Bad models of disability • Perpetual infant/Little Innocent Angel • Sick role/invalid "Medical Necessity" • Geriatric/Terminal • Low expectations • Dependency, limited or no autonomy • Top (or only) priorities become safety, protection, ease and convenience for caregiver

12. ADLs - Eating • Ataxia – bigger, heavier utensils • Reduced dexterity – swivel and/or bent spoon

13. Winsford feeders • Cheek switch to scoop and present food • Need some head control • Hands-free

14. Food preparation

15. So, who dresses you? • 46 year old with C6 quadriplegia does not want to stay at world famous rehab center longer to learn dressing skills • 12 year old girl starting to have conflict with mom over clothing choices

16. It’s OK to get your adaptive technology at Wal-Mart when… • Regular car seat OK for moderate limitations in trunk control, check weight/height limits • They start selling I-Pads and you can afford one • It’s just what you need and costs a lot less

17. Gadget Tolerance = Independence

18. I want to get my son a voice activated computer to use at school! • Simple handwriting replacement – consider portable keyboard instead (AlphaSmart/QuickPad) • Voice recognition continues to improve • Still slower • Hands free use possible • Different style of proofreading – spellcheck won’t work • Adaptive keyboards, alternative mouse access • Small for weaker or lower arm mobility • Larger for less accurate hand use • Trackball, HeadMouse, MouseKeys • aboutonehandtyping.com • Or…

19. Writing and typing • Writing bird, typing stick (or use pencil, eraser end down in cuff) • Don’t underestimate two or even single finger typing

21. Motor, sensory, or cognitive issues • Tactile mouse for blind person experimental • Need keystroke navigation • Screen reader = text to speech • KE:NX – reads what you have written • Magnification software, large monitors • Scanning access – severe motor issues • Low efficiency • Compensate with word prediction

22. Web Accessibility • PDF is no longer “Pain, Despair and Frustration” • Flash is the new PDF • Section 508 • Alt text • Captions and transcripts • Think about screenreaders • EASI at RIT

23. AAC - PM&R/Physician Roles • Identify potential • Document medical necessity • Write Rx, make referrals • Guide selection – PECS vs Liberator • Reassure and educate re process and outcomes • Appropriate expectations of appropriate technology • Let kids tell bad jokes in clinic • Learning cause and effect

24. Alternative – Augmentative • Prerequisites vs Participation • Interdisciplinary evaluation mandatory • Rx “therapy units as needed” • Stress medical, not peer communication • Different choices for ambulatory vs w/c with tray user • Verbal communication may increase • Signing increases Language • Communicate more than basic needs or yes/no to familiar caregivers • May interface with computer (or be a computer) • Training and programming issues • Literate English vs special language vs pictures • Need for support, upgrades (college level)

25. The McDonald’s Shake Story

26. The Strawberry Shake Story

27. Resources • Arkansas Easter Seals Society • http://ar.easterseals.com/site/PageServer?pagename=ARDR_tcc • ICAN Increasing Capabilities Access Network • http://www.ar-ican.org/ • International Society for Augmentative and Alternative Communication • http://www.isaac-online.org/en/home.shtml • RESNA http://resna.org/ • Prentke-Romich and other AAC companies • http://www.prentrom.com/ • John Halloran • http://www.pedspmandr.net