Self-Determination, We Have Lift Off! (thank you iPad)
My brother, David is a habitual watcher. He was always this way. As children, I would sit and play and he would sit and watch me play. He was never interested in fictitious, symbolic, or representative things. Only real people, real interactions.
Over Christmas, I introduced David to the iPad. David and I played Virtuoso piano together. To sit and play piano together, this was really something. Through tapping on the screen, having tones emit, David found a way to interact with me and I with him. And each time I think about that day I think “Forty-some years, and that was the first time we had a “back and forth” conversation.”
Once I handed David the iPad, we tried a variety of “aps” or applications. Movies, iTunes, games, piano, AAC communications. Our roles reversed. I was the observer and he, the primary doer. David engaged with the surface of the iPad easily.
Historically, there have been many barriers to using AAC devices: (Source) This includes policy, practice, knowledge, skill, and access barriers. My brother, David, was impacted by all these barriers. Throughout his school years, barriers existed suggesting that his intellectual disability precluded the need for him to have AAC. The degree of fine motor skills precluded the capability to have AAC. The cost was prohibitive for our family to trial, and forget about buying (when the policy barriers precluded it). It was these same barriers that eventually made David a prime candidate for “Facilitated Communications.” Facilitated communications was considered a breakthrough method of communications for individuals who did not speak verbally. I was living out of the area at the time and I remember when they called me and put David on the phone and “he” said “I love you.” I was at work and cried like a baby. And then I thought, a) hey I have 8 other siblings and I know “us” — the first thing all of us do is tell a joke–we do not tell emotions! and b) who’s pressing the buttons?
So back to the iPad. Who’s pressing the buttons? No keyboards, no pens, no pointers, only a beautiful surface area. No requirements for fine motor skills. Can’t tap? Slide! Can’t use a single finger? Use your hand and swipe! ). Graphics? Traditional symbolic pictures sure, if you want them. But real pictures or even videos can be used instead! Audio? Synthesized voice? Sure, if you want it. But how ’bout real voice? Mom’s who record for their sons — you can “bend the pitch” so that mom’s voice now sounds like a male voice — you can record and yet give your child their own voice. It has an easy touch, crystal clear visuals, and terrific audio. And David can hold it in his own hands. It is light, portable. He can hold it. It can rest on the table. It can be his. For the first time AAC can be small enough and customizable enough to be “personal.” And the myriad of aps means that this device can be truly an external extension of David’s unique self. And still “standard” enough for others to understand and interact with him without a PhD!
I admit that I’m a steadfast zealot. Why?
Yesterday, my sister Mary and I had an iPad meeting with David’s provider. 8 people + David, Mary, and I. There were several people in the room who had not been present for the previous discussion and so, although David was taking a break out of the room, we decided to review the background for the meeting. I explained that Mary and I had thoughtfully loaded applications on the iPad that were specific to David, his potential likes (we all get bored or change our minds), and also specific to the way he uses his hands. For example, every ap had a very large surface area and therefore did not require finger pointing precision. Full-hand gestures would work equally well. If David were to place his hand on the screen, a response would happen. And the screen would also pick up micro-gestures: small, almost invisible movements in David’s hands. These micro-gestures might come from small twitches or they may also be David’s reaction and engagement with his environment. Also, through the applications — even non AAC aps — David could make choices about what he likes and doesn’t like (self determination!) and communicate that to you!
We sent around Koi Pond for everyone in the room to touch and feel. Touch the screen and “splash!” it is as if you traipsed your hand through the water of a pond. Around the table it went” Splish-splashing all along the way. David returned to the room just as the iPad came back around. I put the iPad in front of David and explained the koi pond. David had not seen Koi Pond before. I traipsed my fingers on the screen: splish-splash. I gently placed his hand on the screen (splash) and on top of his hand I tapped my fingers. I tapped my fingers on the screen: splish-splash. I left him and continued talking. David sat there. His hands did not appear to be moving and yet we heard quite a volley of splishing and splashing. Micro-gestures! Eyebrows raised all around the room (including me and Mary!)
Another application around the table: Pocket Drums. Thumping, bonging, Binging all around the room. Back to David. David had not seen Pocket Drums before. I tap the screen: Thump, Thump, Bing!. I place his hand on the screen: Thimp-thump. I tap the screen again: Thump, Thump, Bing! and leave him alone. We continue talking. Micro-gestures. Thump…. Thump…. Thump…. David smiles. He lifted his left pointer finger high in the air and dropped it. THUMP! He smiled. Everyone stops talking and watches David. He does it again repeatedly. THUMP THUMP THUMP. He laughs. He starts tapping all his fingers — individually! Thump, Thimp, Bing, Bong! David is laughing out loud and brings his other hand over and is playing drums. He is laughing, smiling, shaking his head — David LOVES it. And the room bursts out in joyous laughter.
We all calm down and keep talking. I pull out virtuoso piano. It can play a duet — a keyboard on each side of the screen. Something David and I had enjoyed doing before. I put it down in front of David. No one is talking. Everyone is watching. I tap C, I put Davids hand on the keyboard. F. C chord badly played by Katy. David hands move. Notes play and then he is agitated. He is shaking his head. Then his body. Then he starts yelling. David is one unhappy unhappy man! “David,” I say, “this is simple, you don’t like it so we can just push it away.” I push it away. He lifts his hands off and looks at it. Gives it a little push. He looks up at me, smiles, and relaxes. Everyone around the room has an “Oh” face.
That’s what I’m TALKING about: COMMUNICATIONS. Self-Determination, we have lift off!
Buy it! Buy TWO. Get on board the iPad train buy one for your child, family member AND one for a friend. It will be worth every penny you saved up. Get involved, get your school involved, get your provider involved. And, let’s get Apple involved!!!
Yours in community,
Kate
Conversation: A Simple Yes/No Will Do
While on the road for the Envisioning the Future Summits, I learned quite a bit about AAC (Augmentative and Alternative Communications). These are “devices” that sit like a tray in front of an individual. The individual can use an eye gaze, some sort of typing, word selection, etc to pick and choose their way through a vocabulary to communicate with to other individuals. Sometimes the process of communicating with these alternative forms of communication can be quite cumbersome especially if the recipient of the communications a) doesn’t understand how the process works or b) is in a real hurry. I met one woman and in trying to carry on a conversation with her, her assistant said: “Shorthand is to ask yes/no questions. She can move her eyes to signal yes/no.” The woman and I had quite a detailed conversation using only yes/no and avoided the AAC all together. I’m not saying avoiding the AAC was the right way to go. But I am saying that learning both options was an important process for me. And I realized just how much we can talk just with yes/no responses.
Flash forward to this week. I spent a couple days with my brother David. David is not verbal. Yes, he communicates. He vocalizes. He lets you know when he is unhappy. He laughs when he is happy. But, I wondered, instead of happy or unhappy could it be possible that David could answer YES or NO questions? David is unable to use flash cards. Those flat pictures or words have no meaning to him. But, David does respond to verbal requests. I wondered…
I never tested a DynaVox or some such with David. These devices cost between $5000 and $10000. Today I realized I have an iPad! I heard several people at these summits mention that there is software available for the iPad. I went on line and queried AAC for iPad and came up with several options:
- Proloquo2go. Costs $189.00. Thats a good price compared to $5000.00.
- TaptoTalk. $99.00.
- MyTalkTools. Cost $34.99. Yes, that’s right, under $35.
- YesNo. Cost $1.99. Yes, you got it under $2.00! Two options: yes and no. Man/woman/boy/girl voices. And the option to program in other pairs of words and record the text!
Here was my big moment today. I simplified the MyTalk so that it only showed 2 options on the screen. Yes and No. I mean, lets just start with the basics.
“David, would you like something to drink?” (I hit yes, I hit no. I did this repeatedly and then showed David how to do it. Repeatedly.) “David, would you like something to drink?” David extended a finger and pointed. I showed him he had to tap the screen. Tap, went David. “Yes.” I hurriedly got up and got him something to drink. No, I didn’t sit and offer 25 options. Yes, he said, and I wanted to get something in his hand immediately.
I tried this for an hour. Various questions. Yes/No responses. David sometimes answered yes, sometimes no. It was getting late. I cleaned up all the glasses and other things I brought him from the yes/no questions. Time for one last question: “David, its time to go home. Do you want to go home?” He looked up at me and shook his head. He reached up to the iPad and hit “No.” Was this a fluke? I moved the iPad so this wasn’t a ouiji answer, guided by me. “David, do you want to go home?” He looked up at me, reached out with a finger and hit the iPad. Tap. Tap. Tap. Tap. “no, no, no, no.” Forget about going home, iPad aside, we went to the living room and sat on the couch. I had nothing to say.
My brother is 48. I am 46. This is the first time we had a conversation of any sort. It was a really big day. Thanks to the iPad.
I have to figure out how to buy one for him a) without worrying about theft and b) teaching staff to use it with him. Perhaps this is our 2011 goal.
Now I wonder… how do we get these devices in the hands of every school aged child with developmental disabilities that could benefit? Is there a donation program? I found one for children with autism: HollyRod Foundation. I saw some individual classrooms requesting them in DonorsChoose.org. But, come on, this is perfect for Best Buddies, Special Olympics, or the Arc to pick up. If you hear of anything like this, let me know.
I’m obviously not the first to report this news. All I can say is when it happens to you, you’re the one who becomes speechless. Other articles can be found here.
Transformation on the Hill: Cass Sunstein
July 22, 2010. I had the opportunity to attend a session “Implications of Behavioral Research for Social Welfare Research and Policy.” It’s one of those weird cosmic events that I started a new “position” seemingly unrelated to my past life and yet one of my first opportunities was a direct link from my work at Bank of America and this new life of Social Welfare. How weird is that? For any of my BAC colleagues out there who work(ed) with me at MIT and the Center for Future Banking, this session demonstrates how the behavioral research from financial services can be directly applied to social welfare programs. Things like “stickiness” associated with loyalty programs could also be associated with social welfare programs. I think you guys should hop on this!
Anyway, for those not in the field of banking, financial services, or economics, there was still some interesting information presented at this session. In particular from guest speaker Cass Sunstein, the OIRA Administrator in the Office of Management and Budget.
Before becoming Administrator, Cass R. Sunstein was the Felix Frankfurter Professor of Law at Harvard Law School. Mr. Sunstein graduated in 1975 from Harvard College and in 1978 from Harvard Law School magna cum laude. After graduation, he clerked for Justice Benjamin Kaplan of the Massachusetts Supreme Judicial Court and Justice Thurgood Marshall of the U.S. Supreme Court, and then he worked as an attorney-advisor in the Office of the Legal Counsel of the U.S. Department of Justice. He was a faculty member at the University of Chicago Law School from 1981 to 2008.
Mr. Sunstein has testified before congressional committees on many subjects, and he has been involved as an advisor in constitution-making and law reform activities in a number of nations. A specialist in administrative law, regulatory policy, and behavioral economics, Mr. Sunstein is author of many articles and a number of books, including After the Rights Revolution (1990), Risk and Reason (2002), Laws of Fear: Beyond the Precautionary Principle (2005), Worst-Case Scenarios (2007), and Nudge: Improving Decisions about Health, Wealth, and Happiness (with Richard H. Thaler, 2008).
Sunstein highlighted a few of the government changes being lead by the current administration. Here’s a taste-tease overview of the changes:
- Defaults. “System” defaults should be set in the benefit of the consumer. For example the Affordable Care Act — the default is opt in for Health Care and must take action to opt out (a reversal)
- Simplification. Federal systems and processes should be simplified so that the target audience has a reasonable chance to fulfill their need through the system/process. For example, Federal Student Aid — highly complex now in simplification (tax data automatically populates FHFSA. SSI using a debit card.
- An attention to how people process information. For example, summary disclosures that are easier to read and comprehend. An expectation that materials are clear, succinct, and conspicuous. Effectively disclosed. For example, OSHA.GOVE — now within weeks of any death, everyone sees it.
- Social Norms. Material incentives matter but people are also influenced by social norms. The government has an obligation to understand those norms and to make decisions based on those as well as the data. For example there is a presidential injunction baring texting by federal employees while driving. Additionally, social influence can be contagious and using social influence for the “good” is a necessary incentive (for example, dealing with obesity)
- Cost/Benefit. The current administration’s decision making will not be based on “dogma, intuition, and anecdotes” but rather in an evidentiary fashion through humanized cost-benefit analysis. All presentations should include an assessment of benefits, uncertainties, and alternatives. Monetary equivalents do not tell us everything we need to know. We have to be aware of the ethics (fairness/equity, impact to future generations, and distributions).
- Open government. Knowledge must be dispersed. “sunlight improves practises, transparency is a powerful disinfectant. Examples: RECALLS.GOV, DATA.GOV, the IT Dashboard.
So what?
- In your strategic planning process you should not underestimate the implications of these changes. There are big things happening in DC and this type of change is pervasive. I know the government moves slowly but I can tell you this stuff is moving faster than you’d expect.
- Also related to strategic planning, this is illustrative of how process can be as strategic as product.
Interdependent Lives 