Van Kleeck and Associates, LLC

Do you ever have the feeling that you have been spinning your wheels for the past 25 years?

During the last several months with the start-up of Van Kleeck and Associates, I have been asked by several organizations to assist with the development of service options. Most of the conversations have been focused on assisting with the development and implementation of Supported Employment services so people can achieve their dream of a community-based job. I have been more than happy to provide whatever is needed to accomplish this goal. Indeed, my roots in this field are firmly planted in Supported Employment.

What I have found most interesting about these discussions is that essentially, with very little or no adjustment at all, I could pull all of the information and presentations and training curricula I used 20 years ago from my archived files, present them today, and they would still be relevant. That is, I could, if that was who I am and I did not want to think or be creative. That being said, this is a disturbing fact and it got me to wondering “how far have we really come in two decades?” How many organizations still deliver their services with the “we’re in business to go out of business” approach we used to hear so much of way back when? Is this still true today?

I think we can all agree that service providers “going out of business” is a highly unlikely reality. There will always be a need that must be met. However, approaching the work with the “we’re in business to go out of business” philosophy compels providers to do their work in a very different way. Reaching for the ideal leads one on a journey that, although the ideal may never be reached, will yield some amazing results along the way.

And so, what do we do? How do we answer the question? This is not meant to be an indictment of any specific service system or organization but intended to stimulate some thought and invite dialogue. How many of you reading this have wondered the same things lately? Perhaps, more importantly, how many of you are asking how we can get back to the approach focused on “we’re in business to go out of business” or “how does my business and the supports and services I provide need to change to keep pace with what the people I support really want?”

Like many people who share Down syndrome, my son Ryan is a creature of habit. I guess this is true for most people who don’t share Down syndrome as well, but perhaps not to the same degree as Ryan. Maybe it’s something in that extra chromosome.

For example, Ryan is an avid fan of the Milwaukee Brewers, Green Bay Packers and the Milwaukee Bucks (also the New York Yankees, but we won’t go there). On the shelves of his entertainment center are clipboards where he keeps track of each team’s schedule and a record of the scores. You can always find the Packers schedule on the left side of the TV and the Brewers on the right side. The Bucks are relegated to a lower shelf. If he misses a televised game (or a game is not televised), first thing the next morning he always checks ESPN to get a score update to record on his sheets.

Ryan’s routines also affect his spirituality. At our former congregation, we always had to sit in the second pew from the front on the left side…with Ryan sitting in the same spot (on the center aisle).  Any variance from that comfort zone made Ryan a bit uneasy. At Bible class, we always had to sit at the end of the middle row of tables (close to the milk and cookies). He wears glasses for close work, but never puts them on at church until the old church bell rings to announce the start of worship. They always come off as soon as we sit down after the benediction. At home, Ryan always spreads out his offering envelopes for the next several weeks (sometimes months) along a specific portion of his desk.

 So, when my wife and I decided we wanted to look for another congregation closer to home and smaller in size, our chief concern was how Ryan would deal with it. If making this change would cause him difficulty, we would put the change on the back burner. Changing routines when the person has an intellectual disability can often have negative results, if not planned well.

We approached this with Ryan by telling him we wanted to visit St. Paul’s, just for a change of scenery. He agreed, but we detected some hesitancy. But, we knew his agreeing was genuine when he made a beeline from the car to the church doors, leaving us behind. As soon as Ryan entered the narthex, the pastor rushed across the room to welcome this new face. By the time my wife and I had joined him, he and pastor were conversing about the Jesus Cares class Ryan attends.

All went well during the service (we convinced him that we didn’t need to sit in the second pew from the front on the left side…the fifth pew was OK). His glasses went on and came off at the normal times.

Once we got back into the car, we asked him how he liked St. Paul’s. He said, “We should visit St. Paul’s more often.” We knew we could proceed with discussing the membership transfer with Ryan. In fact, he assembled a list of questions he had for pastor…when is Communion offered, when can we get offering envelopes, can we go to Bible class, and will there be snacks there. Like most people, Ryan wanted answers to the questions of food for the body as well as food for the soul.

Bottom line…we made the transfer and are looking forward to becoming more involved in our new church home…all three of us.

(continued from Rethinking the Box – Part One)

Creativity is, for all its mystique, a problem-solving process.  It doesn’t matter whether you’re a composer or a corporate trainer; whether you work in person-centered plan design or web design, it’s all about solving problems.  When those problems interact with patterns of thought and action, you have a box.  Sometimes, that’s a productive interaction and sometimes it’s not.  When a new pathway is needed, it’s time to bring new things inside and redefine that box.

There are good things outside the box

There are an infinite number of good things to be found beyond the parameters of our well-worn pathways of thought. In fact, the nature of good ideas, especially those put into practice, is very evolutionary.  The notion of the “Eureka!” moment where an idea, fully formed, pops into being is pure fairy tale (or just dumb luck).  Good ideas are most often influenced by other ideas and other factors, often with no relationship whatsoever to the original problem.  (See “Building Capacity for Innovation”)

For example, technology buffs began saying “computers will replace books” somewhere in the 1980s.  On the other hand, publishers and lovers of books scoffed at the notion, claiming that computer screens fatigued the eyes and the design of machines didn’t match our reading habits.  Both sides were right. And both sides were wrong.  Neither the computer alone nor the book alone is responsible for what we have today —  ebooks and the ubiquitous Nooks and Kindles that deliver them.  Both the book publishers and the tech manufacturers allowed themselves to be influenced by ideas regarding form and function that were not part of their original thinking.  And both have benefitted greatly as a result.

Often, good ideas get to be useful ideas when they are influenced by unexpected outside forces.

We’ve seen phenomenon in the disability field.  Here’s a question: When was the first motorized wheelchair invented?  Would you be surprised to learn the year was 1916?  The project was abandoned for decades because it had no practical use.  The wheels of a typical wheelchair are built to be operated by hand and attempts to motorize them resulted in a host of engineering and structural disasters (bent axles and burned out motors).  Success didn’t come until decades later – after the rehab community was influenced by a world of mechanical operations that had nothing to do with wheelchairs – automotive technology.  And it didn’t stop there.  In recent years, work in the area robotics revealed that tracks, rather than wheels, were the key to solving stability issues.  This seemingly unrelated influence paved the way for the kind of wheelchair people have been waiting for.  The kind that will climbs stairs.

The most important thing outside the box

So, let’s go for a walk outside the box.  But let’s keep in mind what we’re looking for. Bill Breen, a writer for Fast Company, addresses the importance of collaboration and looking outside of our usual avenues of attention in his article on the Six Myths of Creativity.  He writes, “The most creative teams are those that have the confidence to share and debate ideas. But when people compete for recognition, they stop sharing information. And that’s destructive because nobody in an organization has all of the information required to put all the pieces of the puzzle together.” 

The most important thing we’re going to find outside the box? Other people.

Whether the organization is technology, manufacturing or disability support services, one  of the lessons of successful innovative influence seems to be this.   The ideas that wait “outside the box”, however interesting to us, remain worthless.   They aren’t any good until they get in the box and become integrated, responsive, and incorporated into our way of doing things.  Then the real power of innovation is released.

God loves all people. God has also given each of us gifts, and He loves us for our own gifts and talents. You may not immediately understand or recognize others’ gifts most of the time. It may take a while to see those unique talents, especially in those people with disabilities.

Others, who are not disabled, have the chance to demonstrate their talents in more situations, because they often have more opportunities than disabled people. Non-disabled people seem to have more experiences that enable them to discover their abilities.

However, disabled people often have different kinds of gifts. Maybe their gift can be a hug, or for some, even a smile. In many ways, these gifts can be just as special, if not more so, than doing artwork or a piece of woodwork. Those gifts can just warm your heart in ways words cannot describe.

Being nonverbal and having autism, I do not have many usual talents of other people. I cannot do sports or play an instrument. However, I like to think my gift will be sharing my book in order to give parents hope for their child with autism or another disability. By visiting universities and colleges, I hope to change future teachers’ perspectives of their students having disabilities such as autism. I hope they will have expectations that they may not have once had.

God found the way for me to share this ability with others. He did so much for this to be possible. Hopefully, God has more in mind for me.

It happened again. We had a problem, and someone encouraged us to think outside the box. The box – the quintessential metaphor for perceived limits on the way we think and act when presented with a problem. Presumably, those limits keep us from adequately addressing increasingly complex problems and, so I’m told, we need to get out of it.

 As a metaphor, “thinking outside the box” is – after years– still very much embraced. Truthfully, I’m a little weary of it. I’m also a little wary of it. Weary, because it’s cliché; but wary because it has never adequately described the problem solving process. In fact, when it comes to how we conceptualize creative thinking, it may have done more harm than good.

Some important things inside the box

This box of ours, the one that gets all the criticism, does have one critically important attribute that deserves our consideration. That problem we’re all trying to solve? It lives in there. Inside the box.

The box is not something we intentionally create. In a sense, it creates itself. When we consider a problem, we look at the factors that define it. Take the case of a person who exhibits behavior that is interfering with overall quality of life. We consider what that behavior looks like, when it happens, where it happens, and what else is going on as it happens. We also know the history of trying to help a person deal with it (i.e., what’s worked and what hasn’t). The elements that compel our thinking along typical and predictable lines include things like our experience, known patterns, and observed outcomes. In other words, the “box” is formed, at least to some extent, by our own expertise. And that’s not a bad thing. I contend that the metaphor itself is inadequate. It’s fine to go wandering outside of the box, but it’s time to start being clearer about the purpose for doing so.

Bach’s Box

Consider an example clearly outside our own field. Was J.S. Bach a creative guy? Absolutely. He made his living writing things like sonatas and fugues – arguably the most rule-oriented and defined art form in all of music history. Anything that doesn’t follow the rules of a fugue (and there are a lot of rules), simply isn’t a fugue. Make no mistake. That’s a box. And some of the most beautiful and expressive artistry in the history of music came from someone who loved working inside of it. Did Bach ever venture outside that box? You bet. In fact, he allowed himself to be influenced by the music of the French and the Italians (who had nothing to do with the forms Bach worked in). Putting together seemingly unrelated things in beneficial ways is a key component of innovation.

It turns out that bringing something new into the box redefines what the box looks like. It’s not hard to find an example from our own world. Remember how we used to determine learning objectives for people with disabilities? We completed assessments that showed us everything people were bad at (or didn’t like doing), then we designed programs that made them practice those very things over and over again. All. Day. Long. It was a lousy way to do things. Then, we looked outside of our special ed./human services system and wondered: What if we look at people’s skills, interests and dreams and design teaching programs to help them achieve those? We brought something different into our box and it changed everything. What happened to the skill deficits we used to build programs on? They’re still here in the box, but now we have a new relationship with them.

Perhaps the summary looks like this:

1) The box = a problem and everything we know about solving it. Most of the time, it works just fine.

 2) When our solutions no longer fit the problem, we need new information and ideas.

 3) At first, all new ideas appear unrelated to our problem.

 4) Discovery of the operational advantage these unrelated ideas bring us creates a new and better box.

 5) New and better box = Innovation.

There are all kinds of good ideas outside of the box, but they’re worthless to us if we don’t find a way to get them inside the box. That’s when the real work begins.

 (Continue reading: Rethinking the Box- Part 2)

 “Who dies at the age of 35?”

I can vividly remember asking this question in amazement after my parents described the life expectancy of my best friend with Down syndrome. Much has changed since that conversation some 30+ years ago. Medical advancements, better daily care, greater understanding, social integration, and other environmental factors have contributed to the lengthening of the life expectancy for people with developmental disabilities.  At Quiet Waters Outreach, it is not uncommon for us to serve people with developmental disabilities (DD) in their upper 60’s…praise God!

However, with any advancement comes new and challenging trends.

Let me explain.  A couple of years ago, we encouraged an elderly couple to let us provide a complimentary weekend of respite care at our bed & breakfast to their 60-year-old son with Down syndrome.  To my surprise, they rejected our offer. When I asked why, they explained that they couldn’t afford to have him away for a weekend because they rely so heavily on their son being a caregiver to them.  In essence, there was a role reversal and now their son had become the family caregiver.

In the respite industry, we focus on providing a break from the daily caregiving routine with the goal of providing at time of rest and restoration to the caregivers. Plain and simple. However, for these aging families, we are finding more and more that we are providing respite care to the people with developmental disabilities from their aging parents.  They are now the ones needing a break from the responsibilities of caring for their parents.

To address this growing trend, we are focusing our efforts on educating the community, caregivers, and churches through a holistic and “big picture” program that emphasizes the importance of recognizing that the definition of caregivers may be multifaceted (including siblings, extended family, and yes, family members with developmental disabilities).  This is a start, however there is a need for much more.

I’d be interested to hear from others out there that have also recognized this growing concern and have found creative ways of supporting families in this “role reversal” situation.  Please share!

Drink deeply from the fountain of salvation.

Sometimes people with intellectual and developmental disabilities need assistance with their decision making. Generally a guardian ensures the person is living in the most appropriate, least restrictive environment, has their medical needs met, and is treated with dignity in their life.

My cousin Glenn has an intellectual disability and his parents are his guardian. Over the years I have heard decisions made FOR Glenn without him or his input. The decisions I overheard were not in regards to medical issues or any other major decision in his life. The decisions that were made included things like whether or not he should attend a family member’s funeral or wedding, or participate in certain activities. The reason behind any decision his family made, whether it was yes or no, always boiled down to one question, will Glenn stay long enough to make the trip worthwhile? Let me make it clear that Glenn is an adult and capable of making this type of decision on his own, if they had only asked him.

The ARC of the United States takes the position that the majority of people with intellectual and development disabilities can manage their own affairs with informal assistance and guidance from family, friends and others. They feel when necessary people should be aware of and have access to preferred alternatives. They go on to say if guardianship is essential, it should be used only to the extent necessary, with a presumption in favor of limited rather than full guardianship.

Sometimes there is no alternative to guardianship. It may be the only way to protect someone who cannot protect themselves. It could be argued that the most important reason to avoid guardianship is that it is a legal measure which deprives a person of control of their own life. An adult under guardianship usually has no authority to make legally binding decisions. The guardianship order may be so broad that it deprives the person of far more rights than necessary to solve the problem at hand. Many people under guardianship have such limited understanding that this has no meaning for them, but for others, it can have a devastating effect having lost control over their lives.

Should guardianship be a last resort after every other solution has been tried and has failed?  Is there ever a time when a guardian interferes with the basic right of people to make decisions about their life?  I would love to hear from you.

Client, consumer, resident, patient, individual…all of these are labels. Why is it that we feel compelled to use labels to describe the people we support? Why not just use the person’s name? It seems pretty easy to use names. Don’t we do that with each other all the time? Well, frankly, no we don’t. 

I have many labels attached to me. I am an employee, staff, client, congregant… and the list goes on and on. It depends upon my role in a given situation as to what label may be applied to me.

So, is it any different that we attach a label to the people we support? I’m not so sure.  In fact, the labels we use change so fast it is hard to keep up with which one we should or should not be using.  It seems that the labels change whenever they come to have a negative connotation attached to them, so we start over with a new term and then the cycle begins again. It is confusing to say the least, and how much more confusing is it for people who don’t spend a lot of time in this arena of support services.

Wouldn’t it just be easier to use people’s names?  In many cases, I think it would.  It implies the person’s individuality and removes the connotations of using a label.  It helps me draw a visual image of the exact person being identified rather than a category of people.

However, a specific name may not always work, just like it doesn’t for you or me.  If I’m speaking about the people I work with, it would be impossible to name each person every time so I use a label – colleague.  With that said, how do we keep from always changing the terms we use or know when to use names and when to use a label?  I’m not sure I have a good answer there.  What I do know is that when I do have to use a label, I will use it in the context of people first language, thereby placing the emphasis on the person rather than the label.  For instance, I might say, “The people I work with have intellectual disabilities.”

It is confusing at times and the ever-changing labels only complicate the situation.  Sometimes I feel like no one really knows who we are talking about because the terminology is changing so often.  For me, I have chosen to use people’s names whenever possible and avoid labels.  How have you met this challenge?

(For more perspective on labels, also read “Is Self-Advocate Just Another Label?)

Recently two high school hockey players in Minnesota experienced spinal cord injuries while playing in high school games for their respective schools. One will never walk again; for the other it is still unknown.  In his first interview since the injury the 16-year-old boy, adjusting to the realities of his injury stated that he wanted to live a full life. “Whatever is normal at the time, I have to accept.” He said. “This is like a calling almost… It’s a mystery, but at the same time it’s got to mean something.” (“This is like a calling almost,” StarTribune, January 20, 2012.)

Meaning, we all look for meaning in our lives. When tragedy strikes or the unexpected happens, the search for meaning becomes more urgent.

Meaning cannot be forced, (i.e. I cannot tell you what this experience means for you). Meaning can only be discovered by the one who is in the experience.

Throughout human history, well intended people have sought to help others by imposing their meanings on someone else’s experience (see the book of Job, for example). More often than not these have been “good Christian” people who want to “help.” Spiritual meaning can only be discovered by the one who is in the experience.

I recently read the book The Boy Who Came Back from Heaven (by Kevin Malarkey, Alex Malarkey, Tyndale House Publishers, 2010). It is a story of a young boy who experiences a severed spinal cord injury in a car accident and was in a coma for two months. He survives despite bleak medical evidence. Once the boy came out of the coma and began to talk, he spoke of angels and going to heaven. The father who writes his son’s story states over and over again this is his son’s experience, he doesn’t “understand it” but he also knows God is beyond his experience.

The book challenges one’s vision of heaven, but what also may be challenged is how come more people don’t have this type of experience. Some may take this as a proscriptive experience, and if you don’t have an experience like this you don’t have enough faith. Or some may take the meaning the boy has gleaned from the experience and expect others to find the same meaning.

This boy’s experience is truly amazing, and he has found spiritual meaning in it, but it is not proscriptive of everyone. It really has nothing to do with his faith—it is his experience, and in this experience he and his family have found spiritual meaning. It is this spiritual meaning which helps get them through difficult times.

There are more than 4.7 million citizens with intellectual and developmental disabilities in the United States.  About 75% of these citizens do not have formal disability services.  They rely on their families for different levels of support.  Of the 25% citizens in the US receiving services, over 56% live with their families.  In some states as many as 80% live with their families.

In a recent survey, 58% of the families stated that they spend more than 40 hours per week providing support for their family member with DD.

There are long waiting lists for services.  As adults with DD age, they have increased life spans.  There are now many households in the United States where the person with the disability is aging and the primary caregivers are themselves aging.

States provide a wide array of disability services to adults with developmental disabilities.  These services and supports provide opportunities for individuals with DD to maximize their full potential and participate in family and community.  However, these services and supports are undergoing continuous transformation and adjustment as they continue to face new financial, political, and economic realities.

States are closing state institutions and shifting supports to community settings.  Demands for long-term supports continue to increase.  Funding continues to be severely limited.  Waiting lists are getting longer.  The need for public resources is being stretched.

The current weak economy and large federal budget deficits are causing state developmental disability service systems to revisit how states provides services and supports.  Family support is a fundamental consideration in budgetary policy.

Should states continue to provide supports to families?  Should that be the preferred funding model?

Should states continue to fund group homes?

If you solely look at costs:

An average person in an ICFDD costs $128,000 a year.

An average person in a group home costs $70,000 a year.

An average person in a host family costs $44,000 a year.

An average person funded with family supports costs $25,000 a year.

So if a state had $5 million to spend to support new people this year, they could fund:

39 people in an ICFDD

71 people in a group home

113 people in a host family or

220 people in family support.

What would you do?