Using health literacy to create practical tools that promote independence

I’ve been involved with Health literacy since  2005 when I attended the Health Literacy Institute in Portland Maine. I have learned a lot about using plain language, being concise, and using visual cues to improve the understandability of communication.

During that time I was immersed in the creation of a collection of recipes – and a system – for supporting people with intellectual and developmental disabilities in the kitchen. At last it is here. Thanks to the many recipe testers, especially Chef Stephen, who gave me good input about what was important to include in each recipe.

Cooking by Color is now on it’s way from the printer.

What is Cooking by Color: Recipes for Independence?

Cooking by Color is not just a cookbook. It’s a method. Using color coding, universal design for learning, and plain language, the information in this book is presented to set every cook up for a successful experience in the kitchen.

Originally designed for teens and adults with disabilities, the system is useful to many others including college students, novice cooks, or anyone eager to take charge of their cooking and menu planning. Cooking by Color has been tested by a cadre of teens and adults. Let Cooking by Color simplify your life and revolutionize your kitchen experience.

Sample recipe from Cooking By Color: Recipe for Independence

Recipe sample: Tuna Salad

The CBC System consists of:

  • Color coding for measuring tools.
  • Color coding for cutting boards.
  • Easy-to-understand instructions.
  • Visual cues for balancing meals.
  • Tips for success in the kitchen.

The CBC system is perfect for setting new cooks up for success!

Order Yours today!

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Free Webinar for Families: Create Your Vision of Health for Your Family

The crux of health literacy is reaching people with information they want, understand, and can take action with.

For me, as a coach for people with intellectual and developmental disabilities, their families, and the people who support them, it’s fun. This is where I learn. This is how I grow.

So to start 2011, I’m offering a free webinar to families of youth and adults with IDD to create a vision for health.  From that vision, that very tangible idea of what they would like to see, we can create the path and tools to get there. Pratical. Useful. Understandable.

Please share with those who may be interested.

Create Your Vision of Health for Your Family

Start the year with a vision.

A vision for a healthy family.

Not just any family. Your family.

Too often, parents of children with disabilities are in the position of reacting. More than other parents, we deal with so many demands in a day: doctor appointments, private therapy appointments, IEP team meetings, and supporting our children at home along with the typical demands of being a parent. If you’re a working parent, top it all off with the demands of work. And what about your friends, your family….your spouse?

And where did health promotion go? Not illnesses like ear infections, colds, or flu. You know. The plans you had to take care of YOUR health and create family habits that promote health and healthy weight for the rest of your family?

Health promotion tends to be put on the sidelines as a separate thing to work on for yourself or teach your children.

Until it’s a “problem.”

Whether you’re thinking ahead or would like to begin to change the path, Joan can help. Learn how by attending this webinar. You’ll leave inspired and with information to take a first step.

Joan, a parent of an adult with multiple disabilities, offers a way of handling the many facets of life in a way to work on health promotion as well as all those other pieces of life. Without adding stress.

Join her for a free webinar,
Create Your Vision for Your Healthy Family.

Stop reacting to the influences on your family.
Choose the direction you want to go.

Sign up today!

“Seats” in the webinar are limited.

What: Create Your Vision for Your Healthy Family
Date: Wednesday, January 26, 2011
Time: 10am Pacific (11am Mountain, 12pm Central, 1pm Eastern)
Where: (insert registration info here).
Cost: Free
(long distance fees apply for telephone users)

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Joining vs. Being Joined

Any “people watchers” out there?

I admit it. I am one. I love people watching. It’s a great way to fill time when waiting. It is also the foundation of an important skill that I call “joining.”

People watching has taught me that it is often harder to “join” that it is to “be joined.” I am certain there is a professional term for this, but I find this a very descriptive way of talking about the process of doing something together or in a group.Recognizing this difference is key to success when working with people with intellectual and developmental disabilities. Let me explain.

Joining

Joining is the act of going over to be with someone else. It is something that we do. An action we take. For some, the process of joining others is easy. “Joiners” typically are confident they will be accepted by the group. Those who are shy, or not as confident, will hesitate to be the ones to join. They prefer an invitation or are happy to watch. Joining another person or a group feels stressful!

Too often, students in special education are presumed to be “joiners.” The assumption is that they will want to do any activity, people, or groups we allow them to join. Yet in observing students in this situation for years, I am convinced that joining causes more stress for many than watching from afar.

When my son, Andy, was in second grade, I negotiated a transition from a self-contained classroom to a general education setting. Andy’s teacher recommended he begin his time in the general education classroom at center time. Andy, like me, is not a joiner. He is cautious about new situations and new people. He is slow to trust.  After a few unsuccessful attempts to have  him join other students in different centers, the teacher was concerned.

I suggested that Andy begin where he does best: circle time. Not only that, but at the edge of the circle rather than in the front. Andy often arrived before the students were ready for circle. He would head straight for his carpet square and sit in the circle area, signaling to the teacher to get with the program. Everyone was thrilled with the difference in attitude from Andy with this change. In fact, once he was joined by his classmates, he did not like to leave. He went eagerly into the next activity: center time.

Being Joined

Andy prefers what I call, “being joined.” He does best when people meet him and share in his activity. In other words, he enjoys others joining him. He likes being the host, if you will.

For people like Andy, the skill to develop is the process of joining another person in their space. The goal is to find a shared space that elicits joint attention and then move into a new activity. That is what circle time was for Andy. He went to his designated “spot” where he understood the rules (“I sit here. This is my space. No one will push me or crowd me on my carpet square.”), ready to start circle time. When the other students came to the circle, they were joining him in an activity he enjoyed. Once they shared that experience, he felt comfortable enough to do more with his classmates.

Now when I watch people, I look for this. You can feel the stress of the person who is pushed to “join” when he prefers to “be joined.”  At the same time, people who are happy to approach groups, to do the joining, are just as comfortable with being joined by others.

I find this to be the most powerful tool I have when working with anyone – regardless of ability.  Here are a few ways to join someone and establish a shared space.

  • Watch. Take a few minutes to learn what they are doing. Watch their eyes and try to feel their emotion. What are they looking at? What is capturing their attention?
  • Approach from the side. When you join, stand shoulder-to-shoulder and look in the same direction.
  • Talk about what you believe the person is interested in. Notice what they notice.
  • Slowly and gently, begin to change your position so that you are in their gaze. Once you are in this position, you can begin to shape the conversation slowly and gently to the topic or activity you would like to do together.
  • Accept rejection quickly and gracefully. If the person does not want to be joined, do not push your presence on them. Step away, give them space, and attempt again after a good rest. Sometimes it takes a few attempts to join in someone’s space.

Coaching someone in their quest to reach new  health goals is definitely something to do in a shared space. Working together in a safe environment is especially key when working with people who experience intellectual and developmental disabilities.

 

 

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The Power of UDL: There’s an App for That!

The first in a series on Apps as tools universal design for learning and living.

By Joan Guthrie Medlen, M.Ed, RD, LD
Healthy Lifestyle Coaching for All Ages & Stage
Reprinted with Permission from joan.wordpress.com

In the past year or two, Apps developers for iPod, iPhone, and now iPad  have changed the landscape of assistive technology and augmentative communication.  So much, in fact, it is overwhelming.

There are Apps for communication, schedules, data tracking, advocacy, social stories, visual timers, medication reminders, and more.  People with intellectual and developmental disabilities and their families are joyfully included in this market. We, too, can laugh when someone says, “Did you know there’s an App for that?”

Not only is there an App for that, they are affordable! This alone changes the power struggle over assistive technology and augmentative communication families and people with disabilities experience.  Why? Because the tools are available through an inclusive market, not a specialized or segregated one.

It’s about time.

This inclusion does come at a price: shopper overload. When I started researching for this article, I expected to find just a few Apps to highlight. What I found is quite different. There are many Apps for different purposes with a new one popping up almost every day. There is even a “Special Education” category in the App Store. It’s exciting, yet overwhelming. How to choose?

This article will focus on a handful of Apps that support communication.  By the way, I have not been paid by any of these companies, and I have not received any specialized services related to the products.

I believe that assistive technology choices are best made with the person and their family leading the way and making the choices. This is easy to do when purchasing an iPod, iPhone, or iPad. Just go to the Apple store and play. Just like everyone else.  Before starting your search, have a clear idea of the strengths and challenges the person who will use the App experiences when communicating and using technology.

The person I shop for mainly uses gestures facial expressions and one verbal expression to communicate with others. He is adept at using a modified picture exchange  method for making choices, comments, and sharing feelings. He learns by watching others. For example, he learned to use an exchange system communication book by watching his direct support provider use hers to share with him. He thrives with joint attention and problem solving.  He does not point well, though, uses his index finger to push buttons if they do not require a strong push. He prefers a combination of photos and drawings. He is able to consistently make choices from a group of six options if he is motivated to communicate. He is motivated to communicate when the outcome is a personal connection and interaction. Less is more. The more he can say with one push or selection, the better.

With that in mind, I went App shopping.  Here’s what I learned:

  • There is a special education category.
  • Some very good Apps are not in the special education category.
  • Many have a free version or free trial.
  • The reviews and websites are very valuable for making choices.

Here are some of the communication-related Apps I found:

Answers: YesNo

$0.99

Answers “yes” or “no”  in a male or female voice.  Could be used with people learning to use the iPod/iPad/iPhone as a communication device, to teach yes/no preferences and cause-and-effect.

yes and no app

Grace – Picture Exchange for Non-Verbal people

$37.99

This APP is designed to be an electronic picture exchange system. The user selects what they want to say from the screen (there are some ways to structure conversations). The user shows it to another person who reads the message with them.  It allows 8 symbols/icons per message.

Grace Communication

iMean

$4.99

iMean is designed for the iPad. It turns the iPad into a letter board with large, easy-to-read keys and word suggestions.

iMean App

iCommunicate

$19.99

iCommunicate is one of those App finds outside of the special education category. It is filed under “Medical.”  It’s App Store page shows it with photographs only, but  drawings or icons could be used if saved in the appropriate file format.  iCommunicate is designed for creating pictures, flashcards, storyboards, routines, and visual schedules.  “Storyboards’ can be used as social stories or pre-teaching stories. iCommunicate uses audio recorded by you.

iCommunicate App

iPrompts ®

$49.99

At first I thought this was overpriced. Especially if it was merely going to provide prompts.  The program is endorsed by Autism Speaks and does far more than provide picture-based prompting. Uses include: Picture Schedules, Visual Countdown timer, Choice Prompts, and an image library. If you have a fourth generation iPod or IPhone, you can take photos for the program using the camera in the device.  It is designed to communicate TO someone or WITH someone, not for spontaneous communication FROM someone. Audio is recorded.

iPrompts App

Look 2 Learn

$24.99

Look2Learn is designed for early communicators providing a method for basic choice making and learning to pair an image with a word. The photos and button sizes can be adjusted for best results for the person using the program. The App allows for a statement and a choice such as , “I want…” or “I like…”  The number and types of messages a person can use to communicate with this program is limited. It is essential to have a plan for the next step when using this program for teaching early communication methods. The website offers instructions and lesson plans for using the App. This program is being used in Orange County, CA Schools as part of a teaching strategy for students with autism called Touch 2 Learn. (They have also developed a Stories2Learn App for social stories).

look 2 learn App

My Talk Tools

Moble App: $39.99
Desktop WorkSpace: $9.95 for subscription
Mobile Lite: Free

My Talk Tools is able to use photos and images to create menus and layered levels of communication menus. It uses recorded voice and photos or drawings that are uploaded either to the device or to the My Talk Tools Workspace. The App provides 1-8  squares for communication selection. In addition, space can be built between the photo options for new users. My Talk Tools provides a one message at a time button system rather than a system to build a sentence.  Users can string messages together. Users can also select one button to share a complex message that is recorded.  My personal favorite feature is an online workspace to create the communication boards and upload pictures. The iPod or iPad then syncs with the workspace so you can record the voice output for each button.  The workspace is optional and is offered as a subscription-based service rainging from $9/mo to $175 for 3 years.

Proloque2Go

$189.99

This program is one that appears to have the broadest support in schools. Keep in mind that does not mean it is the best choice or the easiest to use. The program works similarly to a Dynavox. The communicator builds sentences using symbols and then plays the sentence back. The system uses digitized speech for voice output, which can be difficult for some users to understand.

prloloquo to go

With the rate of development for Apps, this is only a few of the more popular Apps that are available for communication. This wide variety of affordable choices is something that has been missing for those who use augmentative communication systems. It is stil very important to consider how the person who will use the App uses technology, their learning style, and their preferred method of communication before investing.  There is also the risk that education professionals will provide an App because it is familiar. This is no longer acceptable.

The good news is you don’t need to take out a second mortgage to be able to provide a communication device for your child.

Have something to say? There’s an App for that!

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Creating Understandable Materials for Persons with IDD

Most of my posts in this blog focus on the nuances of health literacy for people with IDD. The importance of listening with an open mind and heart. The subtle ways we communicate and act on that information. The importance of trust.

Most of the articles I write for others focus on creating print and internet-based materials for people with IDD.  The thesis is typically the same: use the same methods as you would for any target audience using evidence from literature in the disability community as your guide.  That simple advice can be overwhelming to health care and health communication professionals.

Why?

Because there is so much!

It takes time, and a skilled eye, I’ve decided to distinguish which tools are similar to those used in health communication and education and those that are new and different. Here are some examples:

Health Communication and Literacy Technique

Special Education Technique

Novella Social Story
Photo Novella Photo Social Story
Video Example Video Modeling
Illustrations Visual Tools
Visual Cues Communication Symbols
Coaching Person-Centered Planning
and  Strategies
Visualize Success

Daily Planner or Calendar

Positive Behavior Support

Schedule or Visual Schedule

The only categories that are difficult to find a complement for are those related to assistive technology and augmentative communication (voice out put). Many of these techniques are also used by health literacy specialists such as Dragon Dictate, screen readers, and button activated voice messages. I haven’t discovered the quick words to identify the techniques. I will.

I’ve shared many of these ideas before.

With these concepts in mind, read these two articles from the Behavioral Health Nutrition Newsletter (a practice group of the American Dietetic Association). The first is an article I wrote about creating materials for people with IDD. The second is an article about creating easy to read materials. When I was asked to contribute, I thought it made the most sense to use the same format as the article about easy to read materials for those with out disabilities.

As you read these to articles, note the similarities and differences in strategy. The best use is to see the article about people with IDD as a supplement to the article on Easy-to-Read Materials.

The irony of being exposed to and able to use techniques common for people with IDD is that the tools will benefit many people who do not consider themselves someone with a disability as well.

What ideas do you have?

PS – Click on the Tools tab above for more articles and resources.

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Is health literacy different for people with IDD?

Recently someone posted a question to the World ED health literacy listserv asking if the needs for health literacy were different for people with intellectual and developmental disabilities (IDD).

Good qauestion.

The answser?  No…and yes.

First, people with IDD absolutely need to be able to find, understand, and correctly use health information. When appropriately presented and supported, the vast majority will be able to do that. The key?  Appropriate presentation and support

So that makes it sound like the needs and techniques may be quite different from people with out IDD. It’s not.

As with any project, it is important to understand the target audience. Here’s a list of ways that life is different for people with IDD:

 

  • They experience “enforced poverty” or low income status (currently to receive health insurance, adults must meet medicaid standards of having less than $2000 at any time and earn no more than $800/mo). There are a few ways to work around this a little, but in the end, the restrictions remain. If a person with IDD cannot afford to purchase health insurance, SSI/Medicaid is the only avenue for coverage and waivers to assist with individual supports.
  • They live in low income neighborhoods. Studies tell us there are inherent barriers to health literacy and health promotion for people living in lower income neighborhoods.
  • Those over 30 likely did not experience a formal education, or any education. It was not federally mandated.
  • Those between 20 and 30 may have the capacity to be health literate, but were not taught basic literacy skills in schools. Especially for those with Intellectual Disabilities (such as Down syndrome), literacy is still widely overlooked. (Despite studies about literacy skills for people with DS and IDD).
  • Some are unable to speak, which makes it very difficult to:
    • advocate for oneself,
    • show what you know (!),
    • tell someone supporting you they are wrong.
  • Direct support providers, the people hired to assist persons with IDD to take their medications, often have lower literacy and particularlly low  health literacy skills themselves.
  • According to the 2007 data from the National health Survey of Children with Special Health Care Needs (conducted by the Maternal and Child Health Bureau), only 41.2% of children with special health care needs “receive the services necessary to make appropriate transitions to adult health care, work and independence.” From this it makes sense that their health literacy skills are not the strongest and lower than the general public.
  • Learning and literacy-related disabilities directly impact health literacy. – Health education is not well done and often focuses on (important topic) relationships and safety rather than medications. I am not sure if medication management is actually in any of hte health education curricula  I’ve seen in special education.
  • The skills needed to bridge the literacy gap, though similar to many of  the things used in our health literacy tool boxes, are not widely promoted to people with IDD or those who support them as a tool for health literacy.
  • Health literacy programs -not all, but those with whom I inquired years ago at the outset of this work – stop short of working with people with IDD.  This shows there may be an attiudinal barrier to improving health literacy.

Add to these barriers, the current budget cuts that will widen the gap as people are forced to more crisis-oriented decisions and, at times, that won’t be enough to keep them from harm. It’s a dire time for people with IDD.

This makes it the perfect time to hone in on effective , community-based tools for health literacy for people with IDD. Building competency and independence when possible only reduces the costs of supports.

What questions do you have to include this target audience in your work?

What tools do you need to include people with IDD in the work you do?

I will work to address them here.

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October is….Health Literacy Month

Actually, October is the designated month for many of my favorite causes, but the two overall favorites are Down syndrome and Health Literacy. It seems fitting that I would celebrate them together here.

Throughout the month I will share insights into tools and topics that are specific to making health care and health promotion easy-to-understand, access, and use for people with intellectual disabilities, their families, and those who support them.

First, a tool.

Plain English Medical Dictionary Google Gadget

Google Gadget

Image of Plain English Medical Dictionary Google Gadget

A Plain English Medical Dictionary widget for your website. If you are a medical professional and have a website, this is a worthwhile widget to add to a resource page or communication section of your site. You can get the code for adding it to your website or blog (though I can’t figure out how to do it on WordPress yet) here:

The widget was developed A team at the University of Michigan Taubman Health Sciences Library. It includes plain language definitions for common medical terms. These words come from a PDF created by the US government that few people are aware exists. The widget makes that information more available, accessible, and discoverable. Click this link above to get the code for adding this “Google Gadget” to your website.  That’s what I did.

Thanks to Helen Osbourne of Health Literacy Consulting for this find.

Down Syndrome: Health Issues

Another resource I would like to spotlight in this post, is Dr. Len Leshin’s Down Syndrome: Health Issues.

Dr. Leshin is the proud father of two young men, one of whom had Down syndrome. His web page is a testimony to his dedication to quality health for all children as well as the need for understandable information on complex topics. Though his busy practice limits his ability to update the site with new information, the site is filled with topics that are important to families of children with Down syndrome that are rarely addressed. He is able to decode research abstracts and studies in a way that is easy-to-understand and act upon. His site is treasured by many as a resource for information you can trust.

My plan is to make one post a week this month to celebrate Health Literacy for people who experience intellectual disabilities.

See you next week!

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