Friday, October 28, 2011

Good News Friday!

Several months ago, Claire Findlay, Imagine!’s Family Support Navigator, facilitated a collaboration that centered on the need for José, a 70 pound child, to be able to access his bedroom, kitchen, and family area without having to be carried by a family member.

Claire and the family applied for assistance through The A.V. Hunter Trust, the Home Builders Foundation (HBF) of Metro, and Accessible Systems, Inc. HBF provided free labor and building materials to help lay concrete and install an outdoor lift (which they determined as the best option after their two at-home evaluations). Accessible Systems sold the lift at a discounted price of $3,800 (regularly $4,600). The AV Hunter Trust contributed $2,500 towards the cost of the lift.

The remainder of the funding for the lift came from Family Support and Imagine!’s emergency fund. The project was completed on Friday, October 21, and the family is successfully using the lift to transport José to the second story level of the home.

This has been a collaborative effort among all the above mentioned organizations and people. Kudos to all involved in this project, especially Claire, José, and his family!

Monday, October 24, 2011

Sliced Bread: The Greatest Thing Since Itself

In the late 1920s, when sliced bread was introduced to the world, I am told my grandmother's response was, "What has the world come to when a person doesn't slice her own bread?" Maybe things haven't changed much.

We have become very comfortable with manipulations of Mother Nature's work - up to a point. We seem to be OK with changing our appearance; the color, length, curl or removal of hair; we gain and lose weight, change the color of our eyes with contacts, and add or subtract accordingly, wherever Mother Nature delivered too much or too little on our behalf.

We seem to be OK with altering the performance potential of our bodies with performance enhancing drugs, laser surgery for vision, hearing adaptations, and joint replacements. We are OK with prosthetics for a variety of missing features, or even organ replacements.

We do these things in order to thrive. Yet we seem uncomfortable when it comes to cognition; help remembering, reminding, reading, writing, and a variety of tasks that require us to think.

Really? Hmmmmm ... Let's see ...

We are OK with an alarm clock, lights that turn on as we enter a room, faucets that automatically turn on and off, toilets that flush, doors that automatically open and close, phones that Bluetooth to cars, cars that alert us about other drivers, brake for themselves, and know when it is raining.

I have spelling auto-correction as I write this. I can even have it typed as I speak, and read back to me when I am finished. We are seeing people let others know where they are by checking in on Facebook.

Even my phone knows where it is and can let me know where to find it, and don't get me started about what credit card use discloses about my life. Many of my bills never reach my attention. They are simply paid each month and I get a notice that I am in good standing.

Yet I still sense we have some level of discomfort and trust when the same or similar tools are considered for use for the benefit of those with cognitive disabilities.

Why? I am not exactly sure. Kinda "big brotherish"? Too risky? Somebody might get hurt, or taken advantage of? Loss of personal contact?

Frankly, I don't consider the loss of a person whom I did not choose, who is paid to be with me, too tough to take. This, of course exempts my professional agent and masseuse.

I know - what is the world coming to?

Then again, what do I know?

Friday, October 21, 2011

Good News Friday!

I often talk about the potential of technology to improve the lives of the individuals we serve. Today, I’d like to share a few videos demonstrating some of the efforts we’ve undertaken so far to explore that potential here at Imagine!. I hope you will be as impressed as I am when watching the videos and reading what is happening in them.

In the first video, Eddie, a individual served by Imagine!, is using technology to learn the first step in communicating on his own by pushing a button to indicate choices. If he pushes the button, he can see clips from his favorite movie, "The Hangover."

That may seem simple, but for someone like Eddie, who has never had the capability to verbally or physically indicate his preferences to others, the simple act of making his own choice is a profound first step toward independence. Simply choosing to see the video or not helps him become an emergent communicator, and change a lifelong mindset of dependence. Using Boardmaker software by Mayer Johnson, Eddie is learning about cause and effect, and beginning to recognize that he can have control over his choices.

This is only an initial step in what will be a long and arduous process. But it is a great example of how technology can change the lives of even those who have spent their entire lives with significant physical and developmental disabilities and have not had the opportunity to direct their own life choices.

This next video is of an EAC, or Educational Activity Curriculum. The activity is called Connect 5, and is in many senses a modified tic-tac-toe board. The board contains 25 squares (five across and five down). The board is further broken down into four color-coded quadrants: red, blue, yellow, and green.

The game is played as follows: each player begins by selecting either the corner square in any of the quadrants, or the center square. From there, the player may then move up to 3 times in any (allowed) direction before selecting a square. The player may choose a square at any time during those three moves. Players with two adjacent playing pieces receive 5 points, 3 pieces receive 10 points, 4 pieces receive 15 points, and 5 automatically wins the game. Games may be played until a player places 5 squares in a row, or until a player reaches a predetermined score.

This activity is designed for users with communication devices, as well as those without. This activity allows players to learn colors, directions, communication device navigation (where applicable), peer socialization, and turn taking. Any of these skills can be learned by any player at any time, and multiple skills can be learned by multiple individuals, all through one activity, thus maximizing the efficacy of the staff member facilitating (The activity is designed for 2-10 participants, where possible).

Most importantly, the learning process is fun!

This last video is especially impressive. The good folks at Twisted Pine Brewery in Boulder have demonstrated their commitment to providing supported employment to those with significant needs by carving out a special position for Gerald. For those of you who don't know him, Gerald lives in the Bob and Judy Charles SmartHome in Boulder. Gerald has significant physical disabilities, including limited mobility and a limited ability to communicate vocally. Over the past few years, however, Gerald has used an assistive communication device called a DynaVox to improve his ability to communicate his needs and desires. He has also used the device to begin to learn how to read, write, and do arithmetic -- at the age of 48!

Twisted Pine has been collaborating with Gerald, Imagine!'s CORE/Labor Source department, and the staff members at the SmartHome to create some tasks that Gerald can perform at Twisted Pine using his DynaVox, including assisting with inventory.

Think about that -- someone who couldn't count to 10 a few short years ago is now doing inventory work for his employer!

This video shows Gerald counting inventory at Twisted Pine.

If you are having problems seeing any of the videos above, just visit Imagine!’s YouTube page – you’ll find the videos described above, and plenty more!

Friday, October 14, 2011

Good News Friday!

Today, I'd like to share a success story from Imagine!'s Behavioral Health Services (IBHS) team. The story is a great example of how a combination of knowledge, hard work, and creativity can lead to extremely positive outcomes. Congratulations to all the staff at IBHS.

Timmy (not his real name) was 30 months old when he was referred to IBHS, or Imagine! Behavioral Health Services. A delightful child who makes eye contact readily, smiles and laughs often while interacting with others, Timmy also used intense and unsafe behaviors that were difficult to understand and manage, including biting, scratching, hitting, and pulling others’ hair, screaming for long hours during the day and night, mouthing feces, and banging his head on hard surfaces. This situation baffled his team of therapists for two years before they asked IBHS for help in the form of a Functional Behavior Assessment.

IBHS began by conducting a Functional Behavior Assessment (or FBA) to understand Timmy’s interaction with his environment, in order to develop his individual behavior treatment plan. IBHS quickly learned that Timmy used the dangerous behaviors to produce responses in the environment that met his needs, and within a month Timmy’s mother and caregivers were educated in providing attention after behaviors that were socially appropriate, and were often “incompatible” with his old patterns of behavior. For example, when Timmy met a favorite person he used to look up, smile, reach out and grasp then pull their hair. Now, Timmy’s mother is very skilled in prompting Timmy to give his favorite people a high five! Fortunately for Timmy, this new behavior is both acceptable in the community and comfortable and effective in helping him to greet a person using his hands. Now Timmy’s family is using behavioral techniques to move beyond inappropriate behavior, to teach him new skills like how to wear his new glasses.

Now that he has turned 3, Timmy’s team supported by IBHS has accomplished several things important to his family. After the FBA was completed, Timmy’s team learned that he had Angelman’s Syndrome. In the context of this genetic diagnosis, Timmy’s behavior makes much more sense! In children with this diagnosis, it is very common for the child to not use verbal language, and to use all sorts of difficult and dangerous behaviors that the caregiver responds to, often because of safety reasons. IBHS understood that this diagnosis makes it even more important to teach caregivers and others to prevent dangerous behaviors by providing appropriate attention, while teaching and strengthening alternatives like playing with toys. That’s why IBHS developed a unique transition document called the “Go Team Timmy” Booklet. This booklet explained in family and school friendly language, all of the important ways to prevent problem behaviors, and how to use teaching moments to make sure Timmy enjoys his time with favorite people, meets his needs, and stays safe.

After Timmy had stopped receiving services from IBHS and went to a family reunion, his mother wrote: “your book was a huge [hit], I sent it to my uncle who has three adolescent daughters with lovely long hair, and they all read it and did an amazing job … It was so helpful! Since they read it ahead of time we didn't have a single instance of hair pulling. I think it really helped them to feel comfortable around him too since they hadn't seen him in 2 years and have never really known what to say about his disabilities.” Timmy is now attending a local preschool, which has asked IBHS to teach their staff to use behavioral techniques, to ensure he continues to make progress.

(story stated by Camille Kolu, Ph.D, BCBA-D)

Monday, October 10, 2011

Navigating The Fire Swamp

I mentioned on Friday that this week there are three big conferences taking place in Colorado this week that have the potential to help shape the future of services for individuals with one or more developmental disabilities in our State and throughout the country.

The focus of these discussions is often on the individuals, but I think it is important that we also include parents in these discussions. Think of what parents have to go through: they get the news that their child has a developmental delay or disability, which will undoubtedly have a profound impact on them for the rest of their lives, and then they are instantly thrust into the complex world of services. Things don’t get any better when the child reaches school age. Navigating the school districts and their services is no walk in the park, either.

But perhaps the most difficult time for parents comes when the child transitions out of school. Suddenly, there are waitlists, fewer service options, and a lot of unanswered questions. Parents can feel as if they are falling off of a cliff, or trying to navigate the Fire Swamp in “The Princess Bride.”

So I hope that the discussions that take place at these conferences include input from parents and are focused on creating “packages” for parents that better prepare them for planning for services for the life of their child, instead of the artificial segmentation the current system has created. It should be interesting!

Then again, what do I know?

Friday, October 7, 2011

Good News Friday!

Next week, Colorado will be the epicenter of three great opportunities for people who serve those with one or more developmental disabilities to learn about what’s going on in our field.

On Tuesday, October 11 and Wednesday, October 12, Alliance will be hosting the Six State Summit, where leaders in the DD field from Colorado, Montana, North Dakota, South Dakota, Utah, and Wyoming will meet and discuss legislative issues and the state of their states.

On Thursday, October 12, The Coleman Institute for Cognitive Disabilities will be hosting its annual conference.

And on Friday, October 13, ANCOR will be hosting its annual technology conference.

All three conferences will be held at the Westin Westminster Hotel, just down the road from Imagine!. And all three conferences will feature Imagine! and our use of technology prominently.

For example, I will be speaking at a roundtable discussion at the Coleman Conference on “Leading an Organization to Adapt and Use Emerging Technology,” and my esteemed colleague Greg Wellems will be speaking on “How Organizations Can Create Partnerships to Develop Innovative Tech Solutions to Improve Services.”

Even more exciting, an individual who receives services from Imagine!, Mandy K., will be participating as a self-advocate at a Wednesday Coleman pre-conference event.

Mandy lives in the Bob and Judy Charles SmartHome in Boulder, and Imagine!’s two SmartHomes are the centerpieces of our efforts to use technology to increase the efficiency and effectiveness of our services. Participants in all three conferences have scheduled tours at our SmartHomes.

We will also have an information booth on our SmartHomes at the Coleman conference. The information booth will display a PowerPoint presentation that provides a simple overview of the who, how, why and what of the SmartHomes. If you are not familiar with our SmartHomes, or even if you’d like a little refresher, take a sneak peek at the PowerPoint below.

I am proud of our efforts to incorporate technology into our services and Imagine!, and it pleases me to see that so many other organizations are recognizing the power and potential technology has to improve the lives of so many.

Tuesday, October 4, 2011

Slow Motion Rethink

There has been a great deal of discussion lately about “long-term care” in our field. While I accept and embrace the challenge of looking at systematic, lifelong solutions that will allow individuals with one or more disabilities to live fulfilling lives in their communities for their entire lives, I am growing to dislike the use of the phrase “long-term care.” There – I’ve said it. Now that I have said it, it probably will be around a long time.

I dislike the phrase because, like many other words associated with people we know, I think it reinforces a stereotype that many people have about the human services field – mainly, that everything and everyone in the human services field moves in slow motion.

Can't see the video? Click here.

Nothing could be further from the truth. Models, methods, treatments, medications, technologies and expectations are changing and improving by the moment. People we serve are responding more quickly and opening more opportunities, sometimes more quickly than the “long-term care” system can adjust.

This is not a recent phenomenon in our field, either. Imagine! was formed back in 1963 by a group of parents who wanted their children (who happened to have developmental disabilities) to have the same opportunities to engage in their communities as all the other children in the neighborhood. In short, this organization was founded to bring about change.

And what a change this organization, and thousands of others across the nation, brought about. Just 50 years ago, the standard practice was to hide individuals with developmental disabilities away in institutions – and as a whole, society accepted that approach.  Now, community integration is the accepted norm. Sure, we still have a ways to go before we get to full inclusion, but you must admit that the last five decades have brought about significant (and positive) change.

That is why it baffles me somewhat when I hear people in our field complain about the ever-changing nature of what we do. Change is a wonderful thing. Change is the reason we are here – to change lives by providing tools and services to those who need a little assistance in becoming contributing members of their communities.

I believe strongly that organizations which embrace change are the ones that are going to be the most successful as we move forward. I only hope that “long term care” doesn’t stand in the way.

Then again, what do I know?