Recently (as in earlier today) I was in Detroit for a business meeting. It was an “Envisioning the Future”” summit hosted by ADD. ADD invited the public to participate in it’s strategic planning process. When asked, what should ADD do (vis a vis their strategic plan) the following advice (paraphrased) was given.
The Keys to Success:
1. Dream big. We should never let the mundane realities sidetrack our dreams. We must dream big. Aspire and inspire.
2. Take small actions. If you want to get somewhere, be somebody, do something, your actions must be small and very very focused.
3. Get a win and keep moving. Sure, celebrate your successes but then don’t stop! Build on your successes to gain momentum and this will enable you to eventually accomplish your big dream.
4. Include other people (family, peers, others) in your dream and your actions. Our success (speed of success, ease of success, order of magnitude of success) are correlated to our supports.
FYI, this was advice from successful self advocates.
Wisdom for all of us.
Have a great weekend.
A friend of mine asked me what I thought about a residential placement option he saw. He’s thinking of the future for his children with Developmental Disabilities. After a very long-winded response email, I decided “Hey I should put this to perspective to greater use.” How bout a little advice from “the other side.” Honestly, let’s put it out there. Your number one worry is “what will happen to my child with developmental disabilities after I’m gone?” And the follow-up “how can I ensure their safety.” Yeah, many of you talk about big dreams for children but really, in your guts, you think “safety.” ( Some of you, secretly are going one step further and you’re thinking “surrogate.” After all, no one can love them like you do, right? How can you find a place that will care enough?) As a sibling after 15 years I can tell you that I wonder “what if I should die before my brother?” And “how can I ensure his safety?”
From the vantage point of 16 years AD (after death). Knowing what I know now, here’s what I wish I could have told my parents. Mom, Dad, there are certain rules of nature that you simply have to acknowledge. I know it’s hard because of the implications. But they’re real, let’s talk about them.
The rules of nature
- There is no permanency. Whatever solution you find — residential, day program, employment, etc — it cannot be permanent.
- There are no guarantees. However much you plan, the unexpected will emerge.
- Walls do not protect. They hide.
- Even children with the most severe disabilities will have to cut the cord. Ultimately they will leave the nest.
- Risk exists for everyone. There is no way to eliminate all risk for your child. You have to get comfortable that there is a level of risk you must take.
- I am a sibling. Stop worrying about giving me an “obligation” or a “burden.” You have given me a brother. Family takes care of family.
- Given these rules of nature I cannot promise you that I will keep everything just the way you set it up. I’m sorry. I’ll keep it that way as long as possible but then at a certain point I am going to have to make changes. I promise to be mindful of your values and David’s needs and desires.
Given all of the above…. As parents, its expecting to much of yourself to find the “golden solution.” It’s not feasible. So, let’s go with you’re finding the best solution today. What is the most important thing to do? Develop a “circle.” Develop a multi-generational social circle surrounding your child. Ensure that you are not the only person in your child’s life who is not paid to be there.
Take it from me. It took me 15 years to understand this simple point. Inclusion isn’t about a house or a trip to the park. It is not about how many times you “get into” the neighborhood. Its not something I can write 5 goals for on an IDT plan. It simply means that an individual is not alone. That they have their own “community/ies” (friends, family, people with shared interests and goals). These people are not paid to be part of the community. To be disenfranchised? To be on the outside of communities versus on the inside? This is what makes a person invisible. Being invisible makes a person vulnerable.
Surely, as a parent, you can understand this. You’re worried about who could possibly replace you? NO ONE CAN REPLACE YOU. It will take a village of people to care as much as you care. To replace the eyes on the back of your head. The one thing you can do (do early, do often, never stop doing) is build the village. If your child grows up living within the village you build, they will always be a valued member of the community and a derivative fact is they will be less at risk, more fulfilled, and reach their full potential.
What parent wouldn’t want that? Start building now.
When I worked in business, we had these things called “moments of truth” — the moments when the business “touched” the end customer. And that touch — regardless of who did it, told the “truth” about the company. About how they work, what they value, how good their processes are, how flexible they are dealing with problems, etc. These “moments of truth,” through time, meant that a business could be a raging successl or suffer horrible losses because of how in tuned they were with their end customers. As times have changed and we’re now well into the “Information Age,” we have 1000 ways to learn about those we serve and various means to maintain this information over time and build upon it.
“Customer-engagement is critical for the success of an organization and in a knowledge-driven economy, the power of information cannot be underestimated. ” (Fast Company)
“The key to achieving emotive success is understanding the customers’ needs and expectations. By doing so, companies can identify the most important interactions – “the moments of truth” – and prioritize delivery accordingly. The IBM customer experience framework integrates four key dimensions: emotive performance, products and services, tactile performance, and channels and touch points” (IBM)
I’m in a new field, now. A field in support of families and individuals with developmental disabilities. Many in this field are supposed to be “advocates,” who must manage needs and expectations on both sides (individual/system) and must do so with an emotive connectedness. As in business, there are some who are in touch with the individuals that define their work and there are some who are just in touch with their work — the day-to-day tasks without sight of the people they are impacting. There are some who are, unfortunately, removed from the day-to-day lives of these individuals. And then, like customer-service agents and sales people in business, there are some who got too close to the fire for too long and burnt out.
I have the best job in the world. Every single day I have the opportunity to talk to an individual or family member. I do not have the luxury to talk only to the ones I know. Or the ones I like. Or the ones who share my opinions and beliefs. The phone rings, I answer. Someone passes me on the street, I talk to them. We’re hosting listening sessions and I work to get people with various perspectives out to talk. “Let’s hear it, let’s hear what you have to say, what your life is about, and what you’re concerned about.” And these are all moments of truth. Two observations:
- We’ve stopped listening. Just like the political landscape of today, we’ve stopped listening to what people are saying. Instead we paint them in a white hat or a black hat and put them in camps “for” or “against” our perspective. We need to listen. We have got to have meaningful dialogue about difficult topics. In business we say it takes “5-why’s” to get to the root cause of an issue.
- We have a generational divide. The “old-timers” were here in the beginning. Pioneers of the movement. They remember a time when there was nothing. No rights to anything. There are the “new-timers” who know nothing other than having rights. For the new-timers, IDEA has always been around. The old-timers fear that things can go back to the way they were before. The new-timers don’t know there was a “before” — its only theoretical.
Last week I met a guy at the bus stop named “Joe.” He said he was in the Special Olympics and the last soccer game of the season was this weekend. I asked if he was sad the season was over. “Yes, really sad,” but he was smiling. “You don’t look sad,” I said. “Well, that’s because Basketball starts next weekend!”
We continued chatting on the bus ride. Joe lives at home but has a job 5-days a week in food services with the Marines. He goes to the neighborhood diner on Saturday mornings. And in the middle of this conversation he explained that he was very afraid because he has a surgery coming up. He remembers a time when he reacted badly to getting a needle (kicked out) and as a result he was thrown to the ground, face down, with someone sitting on him and forcibly restrained. Hmmm. This conversation had a lot to digest. In one conversation, one person, we were trying to satisfy all levels of Maslow’s hierarchy simultaneously! Psychology, Safety… Self-actualization.
We have to create opportunity for “moments of truth.” We cannot close off perspectives we don’t like. We must continue to talk. We must understand our common grounds. We cannot ever stop listening.
What’s your truth?
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.
- 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.
Note: This article was originally published on my TypePad site.
(Ad from TV History) In a little row house in Philadelphia, we watched history tick by at the knee of my father. He would bellow, “this is History In The Making, you need to see this.” A pack of 10 children, we piled around a ~14” rabbit-eared Bakelite RCA black and white TV. We were right there as history unfolded. We watched with wonder and amazement – as things that could never happen – happened.
In, 1969, I was 5 years old. I sat piled together with my brothers and sisters to watch Neil Armstrong’s “one small step.” My father, a boisterous man known to talk to the television, watched in awed silence. The Eagle had landed! Who thought we could put a man on the moon?! Days later, my father was singing along with Dorris Day: “Que Sera Sera” and turned to me suddenly and asked “what do you want to be?” “I don’t know, Daddy, what should I be?” He replied “President of the United States!” He sat me down and told me about the greatest President we had. Someone named Kennedy. The one who started the race to the moon. The one who had said “Ask not what your country can do for you…” and acknowledged the need for equality. And if that boy could be president then by God, his own daughter sure could too! *I* could make history?!
That same year, my oldest brother joined the marines and shipped off to some place called Viet Nam. Television in the early 70’s defined my life. After all, my family spent 6+ hours a day for the next couple years looking at little boy soldier faces, searching to find my brother in the crowd. We watched the morning news, the afternoon news, the evening news and the nightly news. My father would lean forward in his chair, his chin jutted forward in a stern setting. His eyes squinting. After the news he’d wipe his hand over his eyes and sigh. Who thought he’d see more little boys go to war.
I was ~10 years old in 1973. A big year as I learned new words like “impeachment” and “Watergate,” which I naively thought was a “water gate.” Watching TV, I learned that power corrupts and saw the downfall of President who’s self-declared that he was NOT a criminal. During the evening news, my dad shouted at Nixon telling him about his oath of presidency, his honor, and the honor of the country. Then he dropped his chin to his chest and shook his head in disgust. Our president impeached?!
My father was Polish Catholic (and, of course, so were we). He was a first generation American. Many of my siblings, now married and with children, started considering themselves Italian from their husband’s side of the family. Back in the day we had a saying. If something was obvious, we’d say “Is the Pope Italian?” In 1978, I watched smoke the smoke change on TV. Black smoke. Black smoke. Black smoke. White smoke! My father explained that the college of cardinals came to a decision and the new Pope was, of all possible things, Polish. My father shouted at the television, pumping his fit in the air. Hoorah! A Polish Pope!
Older, on my own, I moved to California after graduating from college. It was 1986. I was 22 years old, an adult, and on my own. I was living in a hotel and daily watched TV with breakfast. Over Frosted Flakes and toast, I looked up at the TV the moment the Challenger exploded. I called home to my dad. We talked about it. Not just the explosion but goodness, a woman astronaut! My father reminded me that “History tells us that all things are possible.” He asked me to reconsider my career… it wasn’t too late, was I sure I didn’t want to be president?
In 1989 my father turned 77 years old. I happened to be back east for a business trip. The most amazing thing happened while we watched TV. We saw the fall of the Berlin wall. The end to the Cold War! My father explained in detail the building of the wall, the split in Germany, the nuclear policies of Ronald Regan. As the crowds broke through the wall, a gasp left his lungs and my father was propelled backward in his chair. “Now, I’ve seen everything.” (photo from TIME)
I moved back east in the early 90’s. Visited my parents monthly or quarterly. And in 1991, I happened to be sitting next to my father as America announced we were going to war. The Gulf War. Who knew a war could be so brief. For a couple months, my father and I talked together about the world and war. We also talked about technology, my specialty. Desert Storm was a feat of technology. My father reached over and put his hand on my cheek and patted it. “Well, even though you’re not president, I’m proud of you.”
At the time, I didn’t know that this would be the last time we watched “History in the Making” together. He died in 1994. After my father passed away I continued to be there, glued to the TV, anytime something historic showed up.
I was living in Paris in 2001 when my oldest sister, IM’d me…TURN ON THE TV NOW … and I switched on the TV just in time to watch a plane collide with Tower 2. My godson, who is her son, lived in an apartment in the next block. Hours trickled past as we watched TV together, IM’d and waited to hear if he was safe (he was). Over the next days, my friends in France asked why I appeared to be grieving as my family was safe. I said, “You don’t understand. That moment was historic. My country has just irrevocably changed.”
Mere months ago I watched the Inauguration of President Barack H. Obama on a 52” flat-screen TV mounted in a conference room in an office. The screen was meant for teleconferences and made you feel like you were in a meeting with the people on the screen. I rounded up people saying, “whatever side of this you are on, you really need to come see history in the making.”
August 2009, here I sit again. I am clinging to the TV. Stuck in another moment of history in the making. The door to the Kennedy era has been swinging shut for the last decade or so. Jacqueline Kennedy, Eunice Kennedy-Shriver, and Teddy Kennedy. I felt more impacted by this last historic moment than any of the others. This one hit home. I felt close to the Kennedy’s, though I never met them. We, Polish-Cathloic. They, Irish Catholic. We, originally 11 children. They, 9 children. A bunch, a clan. We, with David and Walter– brothers with disabilities. They with Rosemary–a sister with disabilities who ended up institutionalized. Our families both had suffered tragedies, lost battles, siblings, and parents. Suffered yet kept going forward, fighting harder, and never giving up. My father, Phil, used to motivate us with “llegitimum non carborundum.” I am certain that their father, Joe, had shared that expression too. In the same decade both our families became activists–fighting for equality for the under-privileged, the overlooked, the pushed aside. Teddy Kennedy represented my life history, all 45 years of it, both personal and societal.
A “moment in history” defines that distinguishable chasm between then and now. It may be decades in the making. There is, however, a pivot point when the doors of the past close and the future stands on the other side. Not here yet. Sometimes we stand on that precipice overcome by the sadness of what we’ve lost. Other times we stand in awe and in hope of what might be. Today I am sad. Tomorrow I will march toward hope.
You know what I learned from the Kennedy’s?
We are in charge of the history that is made.
What will your legacy be?