The Dignity Of Risk

Readers of a certain age will instantly recognize the music, and especially the voice-over, in the video below.



In the era before multiple television channels dedicated to showing sports 24/7 existed, ABC’s Wide World of Sports offered the opportunity to see televised sports that otherwise were never broadcasted in America, sports such as rodeo, curling, jai-alai, surfing, logger sports, demolition derby, slow pitch softball, and badminton.

The intro to the broadcast shown in the clip above has taken on an almost iconic status in our culture. I think it has to do with the universality of the phrase “the thrill of victory, the agony of defeat.” To varying degrees, most of us have experienced both emotions and can see our own lives embodies in that simple phrase.

Whenever I hear that phrase, I am reminded of another phrase, one I used to hear often when I was starting out in the field of serving individuals with one or more developmental disabilities. That phrase is “dignity of risk.”

During the 1970s and 1980s, the de-institutionalization years, individuals who had spent their lives in institutions began to be integrated back into their communities. This caused some concern for many well meaning families, caregivers, and providers who worried about the risks involved. The worries expressed included apprehension that these individuals would be leaving places where they were safe, where they were happy, and where all their friends were, for a world fraught with danger and threats.

The phrase “dignity of risk” was meant to acknowledge that, indeed, those coming out of the institutions faced risks, but with those risks came great opportunities. That all of us, regardless of our ability or disability, can experience a more robust life when we can make choices and take responsibility for those choices. That without occasionally stepping outside of our comfort zone, none of us will have opportunities to experience either the thrill of victory or the agony of defeat. Families, caregivers, and providers had to be reminded that both experiences, high and low, could be positive and life changing, and that everyone should be given the opportunity to create those experiences for themselves.

Times have changed, and very few people argue anymore that they’d prefer to see individuals with one or more developmental disabilities living in the sheltered world of institutions (which often weren’t very safe or healthy, anyway). Most people now agree that communities benefit greatly from the full participation of all of its members.

And yet, I still hear elements of those long ago expressed concerns when difficult things happen to those we serve. I often hear people engaging in wishful thinking, yearning to put some of those we serve into a protective bubble so they won’t have to experience anything unpleasant.

I reject that sort of thinking.

Now, let me be clear – I believe that the health and safety of those we serve are paramount, and I don’t advocate that we ignore safety when providing services.

But I also believe strongly that there needs to be a balance. Support systems should not overly favor safety versus growth. We can’t forget that the best things in life happen to people when they explore boundaries and look for new opportunities. A perfectly sheltered life is a life without development. We’ve seen what that life looks like for those we serve, and it wasn’t pretty.

There are many lessons to be found in both the thrill of victory and the agony of defeat, and those we serve should have the chance to learn those lessons just like the rest of us.

Then again, what do I know?

Good News Friday!

Imagine!’s Dayspring department hosts Community Calendar Activities throughout the year designed to introduce families of children with developmental delays and disabilities to places in our community that offer great activities and opportunities for children to meet their goals through fun and play. All Community Calendar activities encourage motor, sensory, social-emotional, and cognitive and speech-language development.

On June 8th, Dayspring held its annual Messy Play Day at the playground behind Imagine!’s Dixon St. office. It’s one of the most fun Community Calendar Activities, and definitely the most messy! This year, there was painting on a large vinyl sheet, sand, bubbles, water to play in and to “paint” cement with, Jell-O to squish hands in, oobleck (cornstarch & water mixture), and a swimming pool with 20 cans of shaving cream sprayed into it that kids could either just touch or climb into.

Some kids were covered in shaving cream, others were more tentative about the variety of textures and sensations – but everyone seemed to have a good time. In all, 38 kids and 27 families attend this year.

Words can’t truly describe this event. Take a look at a few of the pictures from Messy Play Day below to see how much fun it really can be!

Who Wants To Run?

One of my favorite ways to exercise is to go on a nice run.

I almost wrote “long” run, but I’ve been a runner long enough to know that what runners consider a long run can vary greatly.

For some, a half mile run around a park is plenty. Others like to run 5K or 10K races. Some take it to the next level and run the 26.2 miles of a marathon. (That’s the furthest I’ve run at one time).

But there are those for whom running 26.2 miles isn’t enough. There are ultra marathons, with distances of 50 miles and even 100 miles. I just recently learned about the Self-Transcendence 3100 Mile Race, which Wikipedia says is the world's longest certified footrace. Runners in this race negotiate 5649 laps of one extended city block in Jamaica, Queens, equal to a distance of 0.5488 mile. The runners have 51 days in which to complete the distance - an average of 60.78 miles every day.

No matter what the distance a runner wants to go, training properly is the difference between finishing the race looking like this

or this.

Training properly is naturally going to look very different when training for a 5K race versus training for a 51 day 3,100 mile race.

Which leads me to my real topic of the day.

Over the past few years, an interesting (and mostly unremarked upon) shift has taken place in way services for individuals with one or more developmental disabilities are talked about and funded. By tapping into the medical model that is driving the Centers for Medicare and Medicaid (CMS), long-term care approaches have become the primary funder and regulatory agent for services. The applied label is “long-term care.”

What do you think of when you hear the phrase long-term care? Adult day care? Nursing homes? Institutions? Regional Centers?

For the vast majority of the people we serve, those options are not reasonable. Long-term care connotes a type of service that is not progressive. It is common for long-term care to provide custodial and non-skilled care. There are no goals to be met or challenges to overcome. The philosophy behind long-term care is one of maintenance, not one of achievement.

I have been stewing on this subject for weeks. I did not choose this profession, and I think I can safely speak for many of my colleagues when I suggest that they didn't choose this profession to simply provide maintenance and custodial care.

We are in the business of life-long learning. We strive to provide opportunities for the individuals we serve to achieve and to build fulfilling lives in their homes and their communities. We seek to achieve community engagement through employment, recreational, and neighborly activities. As a result, people we support can contribute, worship, and play, instead of expecting to be on the receiving end of custodial care.

Want to see evidence of that fact? This link will take you to a list of websites for members of Alliance, an organization dedicated to enhancing and strengthening community services and supports for people with developmental disabilities in the state of Colorado.

If you click on any of the website links, you will quickly see some common themes developing. You’ll see words like “ability,” “community,” “opportunity,” “choice,” and “participation.” What you won’t see is reference to long-term care. The communities and organizations that have built the system of services for some of our most vulnerable citizens never intended for those services to simply be about maintenance and custodial care.

They were meant to provide much more than that – things like the opportunities to dream big and to work hard to make those dreams come true. I don’t think there is ill intent by those who conveniently apply labels, however, the current funding system we’re using is not in concert with making even the smallest dream come true, and it hinders our ability to build meaningful and life enhancing services in the future.

The people we serve want to run many races, and those races have many different lengths. They need to train differently depending on the race. The funding system we have for services right now is a training system geared toward only one race and one length, and that length is probably the least desirable length out there (which for me would be the 3,100 mile race – I mean seriously – who does that?).

We have to ask ourselves, what funding model is the best to address the needs of those we serve. As my father would say to my siblings and me when he wanted a chore done, “Who wants to run?”

Then again, what do I know?

Good News Friday!

On May 13, world renowned sculptor and Imagine! consumer Alonzo Clemons, his caregiver Nancy Mason, and Imagine!’s own Gary Stebick appeared live on the “Colorado & Company” TV show (KUSA Channel 9 in Denver).

If you missed the segment, not to worry! Check it out below. In the clip, Alonzo demonstrates his amazing skills, creating a horse sculpture in less than ten minutes. Also in the clip, Gary does a great job explaining the depth and breadth of the services Imagine! provides to individuals with developmental disabilities.

Update: I’ve had a couple of people say they are having trouble with the video above. If you can’t see it above, click here to see it.

Good News Friday

Two items of note today:

First of all, if you haven’t already, I'd like to gently remind you to please vote for Imagine! Behavioral Health Services (IBHS) to win a NOVA Award through the Community Foundation of Boulder County. IBHS is one of 23 local nonprofits that have been nominated for a NOVA Award, and IBHS was nominated for this prestigious award for their collaborative partnership with Mental Health Partners to improve services to people with a dual diagnosis of having a developmental disability and mental illness. Voting runs through this Saturday, June 11. The winner of the NOVA Award will receive $5,000 as part of the award. Please vote only once but feel free to forward the link to vote to your friends and family.

Click here to vote.

Secondly, The Millennium Harvest House in Boulder is continuing its support of the community by hosting non-profit groups during each of the 2011 “Notorious FAC” concerts. The Millennium is located at 1345 28th Street, Boulder, CO 80302 (just south of the intersection at Arapahoe and 28th Streets, behind the Safeway).

Imagine! will be a featured non-profit at the FAC on June 17, from 5:30 – 9:00 PM. The event is free and features a performance by Dotsero.

Imagine! artists from C.O.R.E./Labor Source art classes will be on hand, and attendees of the FAC will have opportunities to learn about Imagine!, and are welcome to draw and paint with our consumers.

Last year, many kids who attended the concert sat side by side with Imagine! artists, creating mini masterpieces together. I’m looking forward to seeing the creative artwork I’m sure will emerge from this year’s event.

Please consider joining us to help to raise awareness for Imagine! by attending the event.

Vote IBHS!

Imagine!’s Behavioral Health Services (IBHS) department has been nominated for a prestigious Community Foundation of Boulder County NOVA Award.

From now through June 11, you can vote for IBHS online to honor their unique (and vital) collaborative partnership with Mental Health Partners to improve services to people with a dual diagnosis of having a developmental disability and mental illness.

Click here to vote!

Here’s a little more information on why IBHS is such a worthy candidate for this award, taken from the nomination:

Some of the individuals in Imagine!'s care have mental illness in addition to their developmental disabilities. Mental Health Partners (MHP, formerly the Mental Health Center of Boulder and Broomfield Counties) is responsible for the provision of mental health services to these individuals. However, individuals living with this dual diagnosis have needs that differ significantly from those of individuals with mental illness only -- specifically, needs for enhanced engagement, rapport building, and support in processing new information -- that were difficult for MHP to meet within its usual parameters of care. In 2005, Imagine! and MHP began developing a unique, collaborative partnership to improve the delivery of mental health services to local individuals with this dual diagnosis by enhancing communication and coordination among the client, his or her psychiatrist, mental health therapist, nurse, case manager, family members, and other significant sources of support. In 2006, Imagine!'s Behavioral Health Services (IBHS) division hired three clinical professionals with the necessary specialized skill set and launched IBHS Mental Health Supports. Through this program, clients receive routine care through Imagine!, and crisis care (e.g., hospitalizations or after-hours intervention), if necessary, through MHP. The two organizations engage in ongoing dialogue to ensure that the services are integrated to provide current best-practice supports to this group of clients.

The collaboration between Imagine! and MHP is the only one of its kind in Colorado and exemplifies innovative, "out of the box" thinking. Typically, services for these two populations are funded and delivered through highly segregated systems, but this collaboration integrates the dollars from both Medicaid and local sources and the services provided by both Imagine! and MHP and marshals additional community supports -- including family members and professional caregivers such as nurses and day habilitation program staff -- to provide comprehensive mental health services based on an understanding of the whole person.

Thanks to IBHS Mental Health Supports, more than 200 local individuals with this dual diagnosis currently receive expert mental health therapy without delay from a licensed professional with more than 15 years experience working with individuals with developmental disabilities. They receive timely psychiatric assessment and intervention from physicians with more than 25 years of experience and expertise in treating individuals with developmental disabilities, acquired brain injury/traumatic brain injury, and dementia. Each of these vulnerable members of the community benefits from enhanced communication between his or her psychiatrist, mental health therapist, and professional caregivers.

Congratulations to IBHS on being nominated for this honor, and don’t forget to vote!

Horton Hears A Who

Tomorrow some of my colleagues and I will be paying visits to several members of Colorado’s national legislators in Washington, D.C. A story I read as a kid, and read to my kids as well, springs to mind: Horton Hears a Who, by Theodor Seuss Geisel.

Translation: Imagine!'s trip to DC

The book tells the story of Horton the Elephant (translate: state and federal governments) who, in the afternoon of May 15 (translate: June 7, 2011) while splashing in a pool located in the Jungle of Nool (translate: deficit ceiling, economic recovery, homeland security, political campaigning, ...), hears a small speck of dust talking to him. It turns out the speck of dust is actually a tiny planet, home to a city called Whoville, inhabited by people known as Whos (translate: people with intellectual disabilities) and led by a character known as the Mayor(translate: Imagine!, advocates, private providers, families, and friends).

The Mayor asks Horton (who, though he cannot see them, is able to hear them quite well, because of his large ears) to protect them from harm (translate: program finance cuts), which Horton happily agrees to do (translate: remains to be seen), proclaiming throughout the book that "even though you can’t see or hear them at all, a person’s a person, no matter how small." In doing so he is ridiculed and forced into a cage by the other animals in the jungle (translate: contrary members of congress and state legislatures) for believing in something that they are unable to see or hear.

His chief tormentors are Vlad Vladikoff, the Wickersham Brothers and the Sour Kangaroo. Horton tells the Whos that, lest they end up being boiled in "Beezelnut Oil," they need to make themselves heard to the other animals. The Whos finally accomplish this by ensuring that all members of their society play their part. (translate: and you know who you are) In the end it is a "very small shirker named JoJo" (translate: don't be this guy – add your voice to the chorus now!) whose final addition to the volume creates enough lift for the jungle to hear the sound, thus reinforcing the moral of the story: "a person’s a person, no matter how small."

Now convinced of the Whos’ existence, Horton’s neighbors vow to help him protect the tiny community.

Wikipedia (translations by Mark-epedia).

Then again, what do I know?

Good News Friday

Imagine!’s employees serve as ambassadors for our organization.

I know that every business says that, but for us I think it holds a greater than average importance. Why? Because so much of what we do involves being out in the community. On any given day, you may find Imagine! employees, along with the people we serve, at local recreation centers, work sites, events, parks, and businesses.

Part of our goal at Imagine! is to demonstrate that individuals with one or more developmental disabilities have much to offer their communities if given the proper tools and support. We can’t demonstrate that if our employees don’t represent Imagine!, and the people we serve, in a dignified manner at all times.

Which is why I was so pleased to receive the email quoted below from Tom Riley, who heads Imagine!’s CORE/Labor Source department, about one employee who recently represented Imagine! in an exemplary manner.

Hello Everyone,

A lady by the name of Louise called this morning to inform us that someone really made her day. A very nice gentleman by the name of Mark, “with a cloth hat,” climbed into the dumpsters at Juniper Properties to retrieve her glasses for her. It really brightened her day. And now that she has her glasses she can see how bright the day actually is.

She offered this Mark in the cloth hat cash, but he would have none of it.

Having worked at the Mental Health Center she has great respect for the work we do. She was moved from admiration to adoration, and given Mark's (and his side-kick cloth hat's) heroic feat and humble refusal for a cash reward, Louise called Imagine! and will be writing a letter of gratitude for the rescue of her glasses and the brightening of her day. She's including a donation in support of the work you all do.

Thank you Mark Lightman!

Add me to the list of those saying “thanks” to Mark. Your simple gesture and act of kindness serves as an embodiment of Imagine!’s mission and reminds all of us of what is really important.

Schlocky

I was recently reading an article in the Harvard Business Review about a woman named Kathy Guisti who had been working a great corporate job, but her career track had been derailed when she was diagnosed with myeloma, a deadly blood cancer.

Her diagnosis led her to create two organizations dedicated to accelerating the development of treatments for the disease, organizations that “have become models for running medical-research nonprofits in a highly disciplined way.”

I was enjoying the article until I came across this quote:

“I wanted people to see that I wasn’t going to run some schlocky nonprofit. I was going to try to do this right.”

Followed quickly by this quote:

“What was clear from the moment I walked in the door was that this place operated in a way you wouldn’t expect of a nonprofit.”

Reading those quotes, the clear implication that came through was that nonprofits just don’t get the “business” side of running an operation. That nonprofits are inefficient and clumsy.

I wanted to be indignant. I wanted to be angry. I wanted to stand up and defend nonprofits.

I wanted to do all that . . . but I had to ask … “Could it be true?”

As much as it pains me to admit it, the perception among many of those in the for-profit world that nonprofits generally operate inefficiently and get things done at a snail’s pace may have some basis in truth. More basis in truth than many of us would like to acknowledge.

My own experience tells me that resistance to the idea operating nonprofits using efficiency as a performance measure comes from a mistaken belief that “efficiency” somehow equals a decrease in the “human” side of human services. Especially when that efficiency is a result of the use of new technologies. There seems to be an irrational fear that technology used to assist us in operating in a more disciplined manner will turn us all into uncaring robots.

Taking the logical next step, then, eventually robotic beings will rule the world and destroy all humans (as described below):



I have certainly heard the concern expressed here at Imagine! that whenever we take measures toward improving our operational efficiency via technology, we lose some of our ability to connect with those we serve (although it is usually minus the robots taking over the world part).

While I acknowledge that those expressing concerns have their hearts in the right place, I think they may be missing the bigger picture. The fact of the matter is that technology used judiciously can provide improvements in infrastructure that easily translate into an increased ability to serve more individuals, with a higher quality of services.

And we’ve been doing this at Imagine! for years. For example, we’ve been using cloud computing since long before the term “cloud computing” existed. We’ve used (and continue to use) cloud technology for customer relationship management (CRM), for enterprise resource planning (ERP) (in fact, check out this article from ComputerWeekly.com about our use of enterprise resource planning software to save time and staff hours), for electronic health records (EHR), for human resources, for document management, and for employee time keeping. We also have embraced social media as a way to connect and communicate with our many stakeholders.

As I said, we’ve been doing this for years. Surprisingly, we haven’t turned into some soulless entity. On the contrary, I’d argue that our use of these technologies has:

• enabled our employees to spend more time focusing on what they do best – taking care of others;

• given Imagine! administrators access to more (and more accurate) data on which to base the creation and implementation of new service models;

• helped families make better decisions about care options for their loved one because of greater access to information;

• made Imagine! a more open and transparent organization; and

• allowed Imagine! to plan and prepare for the future despite uncertain times.

So while I find there is occasionally complacency (at best) and resistance (at worst) toward embracing new technologies as a way to improve our operationally efficiency at Imagine!, I am proud of our continued efforts toward improving our infrastructure as well as the way we deliver our services using all the latest tools and knowledge available.

Imagine! schlocky? I think not.

Then again, what do I know?