Boston Children's Hospital model for patients who are Communication Vulnerable

A MUST read/watch for any healthcare professional working in a hospital, nursing home, etc...

The Boston Children's Hospital service delivery model for patients who are Communication Vulnerable was recently highlighted in the AAC-RERC spotlight on Supporting Effective Patient-Provider Communication Across Health Care Settings


http://www.childrenshospital.org/clinicalservices/Site2016/mainpageS2016P15.html

Secretion Management in ALS

http://www.alsphiladelphia.org/NetCommunity/Document.Doc?id=833

 

Some people with ALS will have difficulty with what feels like excess saliva in their mouths, which may result in drooling (sialorrhea), choking and disrupted sleep.

Saliva is a normal substance in our bodies, used to help moisten the oral cavity (our mouths and throats) so that we can swallow more easily. It also plays a role in early digestion of our food. Saliva production is increased anytime we smell, taste, chew and swallow food. For the person with ALS who has weakened mouth, tongue and throat muscles, swallowing normally-occurring saliva can be difficult, resulting in drooling and/or choking. Medications commonly prescribed to decrease saliva include: amitriptyline, robinol ®, levsin ® and Scopolamine® patches. Possible side effects of these medications include dry mouth, constipation, and urinary hesitancy. These drugs should be used with caution if you have glaucoma, an enlarged prostate or problems with memory loss. Botox® (botulinum toxin) is often prescribed if the medications noted above, are ineffective. Botox is injected (by a physician who has received special training in this area) directly into the parotid and submandibular glands, where the saliva is made, causing a decrease in saliva production. It often takes 1-2 weeks for maximum effectiveness, and if it is successful, will usually last (decrease saliva production) up to 12 weeks.

For sleeping difficulties due to the build-up of saliva, try elevating the head of the bed with pillows or by placing a bed wedge under the mattress.

Thick sputum in the back of the throat can be another concern for the person with ALS who has weakened throat muscles. Clearing sputum can be difficult, often leading to choking and/or the fear of choking. Medications used to treat this problem include: Guaifenesin (which is plain Robitussin®), Albuterol® and Mucomist®. The latter two medications are usually administered via a Nebulizer; a Nebulizer is a machine that changes the liquid Albuterol® and/or Mucomist® into a mist, which is then inhaled via a mask.

Two other pieces of respiratory equipment may be helpful in battling thick phlegm—the suction machine and the cough-assist device. The suction machine may help in loosening and clearing sputum by placing a large catheter, or wand (called a yankeur catheter), in the front part of the throat. This both stimulates a cough reflex and some of the sputum will be suctioned out via the wand. The cough-assist machine produces a pressure that helps the person with weakened throat and mouth muscles produce a stronger, more effective cough. The Nebulizer, suction machine and cough assist device are usually covered under most health insurance policies. A respiratory therapist (RT) should be involved in teaching how to use the respiratory equipment properly.

Tobii Unveils Ultraportable Computer-Access Peripheral, Bringing Gaze Interaction to Standard Laptops and Computers

 

Today Tobii announced the release of the next-generation Tobii PCEye eye trackers. The Tobii PCEye Go and PCEye Pro bring gaze interaction to standard laptops and computers, allowing individuals with communication and rehabilitative disabilities to control all the functions of their computer using only their eyes.

The Tobii PCEye Go and PCEye Pro are peripheral eye trackers that connect to standard laptops and desktop computers through a single USB connection, allowing users to navigate and control the computer with only the movement of their eyes.

The PCEye provides users who suffer from Lou Gehrig’s disease (ALS), stroke, MND, spinal cord injuries, Rett syndrome or cerebral palsy access to the full suite of computer applications. With the PCEye, users can surf the Web; play games; use environmental controls; connect with friends via email, Skype and social networks; and even work with spreadsheets and create documents.

 

Business Wire -

“With the PCEye and Gaze Interaction, individuals with disabilities are no longer confined to a controlled computer environment; instead, they can enjoy the full freedom and access of a standard PC,” said Oscar Werner, executive vice president of assistive technology at Tobii. “We give individuals new ways to connect with others, make their voices heard, stay informed, and live more fulfilled, independent lives. We even give them the opportunity to continue employment.”

Extremely portable
The PCEye comes in two sizes. The smaller Tobii PCEye Go is primarily meant for laptop use and smaller desktop screens. The larger PCEye Pro is optimized for those working with bigger screens.
Both easily attach to and detach from the desktop or laptop using magnetic mounting plates and a USB connection. This makes it easy to take the PCEye along at all times: to school, to work and back home.

Relaxed and almost pixel-precise computer access
The PCEye comes with the Tobii Gaze Selection software, which makes it easy to control the computer and significantly reduces the risk of unwanted clicks, giving the user more relaxed, almost pixel-precise computer access. To write texts, messages or URLs, users can use the on-screen keyboard that is built into Gaze Selection or any of the keyboards that come with the optional Tobii Communicator.

“We’ve listened to our users saying they want more portability and the ability to access modern computer apps and programs with ease,” said Tara Rudnicki, president of Tobii ATI. “With the PCEye, our users are able to advance in the computing age with equal, or even superior, ability.”

Availability
The PCEye Go is currently available for purchase. The Tobii PCEye Pro will be available later in 2013.

Additional resources

To learn more about Tobii PCEye Go and Pro, please visit www.tobii.com/pceye, contact sales@tobiiati.com or call 1-800-793-9227 begin_of_the_skype_highlighting 1-800-793-9227 
.
Click here to see Tobii assistive technology devices in action.

About Tobii Technology
Tobii Technology is the global market leader in eye tracking and gaze interaction. Our products are widely used within scientific research and in commercial market research and usability studies, as well as by people with disabilities as a means to communicate and to access and control their computers. Today Tobii contributes with a wide range of Augmentative and Alternative Communication (AAC) products. www.tobii.com
About Tobii ATI
Tobii Assistive Technology Inc., a wholly owned subsidiary of Tobii Technology. For nearly two decades, Tobii ATI has been helping men, women and children with disabilities such as autism, cerebral palsy, Lou Gehrig’s disease (ALS), muscular dystrophy and spinal cord injury lead fuller, richer lives. Through its total commitment to serving its customers — individuals, families, doctors, therapists, schools and rehabilitation centers — Tobii ATI has developed a reputation as an innovative and caring industry thought leader that continues to push the boundaries of what’s possible to deliver the most advanced, effective and empowering communications tools available for a wide array of disabled communities through award-winning eye-tracking and gaze-controlled hardware and software. Tobii is the global leader in eye-tracking and gaze interaction. For more information, please visit www.tobiiati.com.

A PALS Perspective: How My Assistive Technology Changed My Life

My name is Gregory Telthorster and I am a person living with ALS. Most of my adult life I had been a teacher of art and technology at a local middle school. I also had been a practicing artist, oil painting being my medium. As my disease progressed I lost the use of all of my extremities and with it the ability to do anything utilizing my fine motor skills (painting, drawing, typing, etc.). As my ability to manipulate a mouse became a greater struggle, I knew I had to find some assistive technology that would allow me to use my computer as both a communication tool and graphic tool. After visiting the Pennsylvania Assistive Technology Lending Library (Temple University), where I tried an assortment of assistive equipment, I found a tool that fit my needs perfectly. It is called a Jouse2 (http://www.jouse.com/). The Jouse2 is an advanced joystick-operated USB mouse that is controlled with your mouth. Just move the joystick with your mouth, cheek, chin or tongue to shift the mouse cursor wherever you want. You can perform right-click, left-click and double-click actions with the sip and puff switches built into the Jouse2.

With the Jouse2 I am able to use my computer "hands-free". In combination with voice recognition software (Nuance Dragon Dictate) the Jouse2 gives me the freedom to use many software programs with precision. I have created greeting cards, coffee-table art books, videos, multiple graphic designs and logos, multimedia presentations and edited photographs with similar ease as I had done when I had full utilization of my hands.

Our daughter, Jessica, was married this past summer. With the help of my assistive technology device, I was able to help with the design of the wedding program and invitations. For the rehearsal dinner, using my Jouse2, I put together a movie complete with scanned in photos, digital photos, old VHS family movies, music and voiceovers. Using software programs like Adobe Photoshop I was able to create our family holiday greeting card. Using book-publishing software I gathered digital images of my art to create a coffee table sized book of my artwork. For this year‟s Super Bowl I created a T-shirt logo that was professionally printed. The joy that this adaptive equipment has brought me is immeasurable! It continues to allow me to be communicative, creative and independent.

 

Galaxy S4 launch: Samsung pins hopes on eye-tracking in battle with Apple

 

Korean company's new smartphone, positioned as rival to Apple's iPhone, will also be able to translate nine languages

The Galaxy S4 launched by Samsung in New York has a 'smart scroll and smart pause' feature that monitors users' eye movements. Photograph: Adrees Latif/Reuters

 

Korea's Samsung turned to song and dance on Thursday as it took a shot at ousting Apple as king of the smartphone.

In a packed Radio City Music Hall in Manhattan, Samsung unveiled the Galaxy S4, the latest iteration of its best-selling smartphone, and set out its challenge to Apple on the US giant's own turf.
In a widely anticipated move, the company unveiled the most eye-catching feature of the new phone. It has pioneered the "smart scroll and smart pause" feature. The facing camera on the handset monitors users' eye movements and behaves accordingly. Tilting the phone while looking at it will scroll web pages and it can even pause a video if a user looks away.

After weeks of teasing, Samsung unveiled a phone it is promoting as "moving beyond touch". With a simple wave of the hand, Minority Report-style, the phone will move a web page or a photograph.
The handset can also translate nine languages, from text to speech and vice versa or just translate text. JK Shin, Samsung's head of mobile, said: "Think about being able to communicate with your friends around the world without language barriers." He called the device "a life companion for a richer, simpler life".

Samsung said that from the end of next month the Galaxy S4 would be offered by 327 mobile operators in 125 countries.

Samsung's Galaxy S4.
Photograph: Andrew Gombert/EPA

The show-like unveiling featured tap-dancing children to illustrate the Galaxy's 13 megapixel camera, which can record the user as well as his or her subject. Other mobiles offer similar functions.
Michael Gartenberg, analyst at Gartner, gave the handset a cautious welcome: "Features are impressive but a lot of them feel gratuitous. Also a lot of features available for other Android devices through 3rd party apps," he wrote on Twitter.

While detailed reviews are yet to come, analysts said it was clear from the scale of Samsung's launch that the Korean firm has Apple firmly in its sights.

Forrester analyst Charles Golvin said Samsung has no intention of playing Pepsi to Apple's Coca-Cola. "Companies like Pepsi and Avis to some extent played up being number two, it was a point of difference. Samsung wants to be number one. In fact, it's saying if you think Apple is number one, you are wrong."

Golvin said Samsung still trailed Apple in the US smartphone market. "Apple has about 35% and Samsung around 16-17%," he said. But Samsung's overall share was far higher and the market is changing.

Six years after Steve Jobs unveiled the first iPhone, smartphone makers are chasing two very different markets. "There's the upgrade market for those who already have one; those tend to be more well-heeled buyers. And there's new buyers – that tend to be more financially constrained," said Golvin.

Samsung's new Galaxy is firmly aimed at the former and the company has a tight grip on the new, less moneyed buyers too. That strategy has presented Apple with its biggest challenge in smartphones yet.

Carolina Milanesi, consumer devices analyst at Gartner, said: "We are at the point where the majority of sales in this segment come from replacement, not new users. In other words, the addressable market is starting to be saturated and now it is about keeping their refresh cycle short. The problem is, though, that technology innovation is slowing down and as we move to more innovation being delivered via software, the cycles are getting longer rather than shorter." She pointed to Nintendo's Wii U games console, launched last November. In January, Nintendo cut its sales forecast by 27%.
Colin Gillis, technology analyst at BGC Partners, said the smartphone war was turning into a two-horse race. "These guys make 120% of the profits because everyone else is losing money," he said.
But Gillis said that if Samsung was really going to beat Apple at its own game, it would need to keep innovating. "Generating buzz is a great thing to do provided your products are worthy of it. This market is exploding. They will sell 10m of these things out of the gate. But it's not a one player market, they will have to really deliver."

Harry Wang, analyst at Parks Associates, said: "Samsung is trying to do one thing: knock Apple's status in the US. They want to show that they can excite the high-end smartphone adopters just as well as Apple."
Wang said Samsung already had an advantage in the Far East where its brand is better known than Apple but it is now clearly after US consumers. "They are catching up. Samsung is now a formidable brand."

He said the company had done a good job of distancing itself both from Apple and its Android competitors. Samsung spent $410m promoting Galaxy in the US last year, according to a report from Kantar Media, more than Apple, which spent $333m on iPhone ads in 2012.

Samsung used a series of ads to mock iPhone buyers for waiting in long lines and to position Galaxy as a smarter, hipper alternative. But Apple edged Samsung out in sales at the end of 2012. The iPhone 5 was launched last September and was initially marred by backlash over the decision to drop Google Maps for Apple's own, flawed, maps programme. It went on to be the most popular phone in the US during the fourth quarter of 2012. Apple sold 17.7m smartphones during the quarter while Samsung sold 16.8m mobile phones, according to Strategy Analytics' Wireless Device Strategy report. The boost made Apple the US's number one mobile phone vendor for the first time ever, with a record 34% market share.

Ex-NFL Player Tweets With His Eyes in Fight Against Disease

 

 

Sam LairdFeb 15, 2013

On Sept. 25, 2006, Steve Gleason blocked probably the most meaningful punt in NFL history. His New Orleans Saints were playing their first home game back in a city that had been devastated by Hurricane Katrina 13 months earlier. The block helped propel the Saints to a poignant 23-3 victory over the Atlanta Falcons. A statue titled "Rebirth" now stands outside the Louisiana Superdome commemorating Gleason's big play.
Gleason was a 5-foot-11, rock solid 212-pound defensive back at the time, a world class athlete playing a gladiator's sport. Today he's 35, confined to a motorized wheelchair and, in his words, has to have "someone else wash my balls." That's thanks to an ongoing battle with the nerve disease amyotrophic lateral sclerosis — better known as ALS or Lou Gehrig's disease — that began two years ago.
But, reminiscent of how he helped inspire a community weakened by natural disaster in 2006, Gleason today gives hope and support to a worldwide community weakened by an incurable disease. And what he does would be impossible if not for powerful technology and the digital connectivity of social media.

Gleason in his playing days; Jim Isaac/Getty Images

A product from the company Tobii lets Gleason use his eyes to control a monitor attached to his chair. He's then able to write messages — including tweets and an email interview for this article — and browse the web despite not having enough muscle function to do so manually. He's also able to move around, speak, open doors and control household appliances thanks to high-tech tools.
But he's not the only one benefitting. His foundation recently constructed the Team Gleason House for Innovative Living, a $25 million, 18-bed skilled nursing facility in New Orleans that he writes is just the second of its kind worldwide and "will allow ALS patients the same technology and level of independence I have."

Gleason also posts personal tweets, signed "SG," to the @Team_Gleason Twitter account (staff members post non-signed messages) and says social media has helped give ALS patients like himself power they never had before.

"Because of the Internet and social media ALS patients are able to share their experiences and knowledge with each other," he writes. "That has played a massive role in the ALS community. We are able to communicate efficiently on topics of treatment, equipment, technology and other resources. Prior to this, ALS patients were isolated and had to rely on their doctors or medical community for advice."

Raising money and awareness, building the high-tech house — Gleason says all that is just the beginning of what he hopes to help people accomplish.

"If we continue to fuel the conversation about ALS and put the brightest people together with the people with the right resources, it can be the most significant impact on ALS in 100 years," he writes.

"Many people and groups are working toward the same goal and collectively, we can all affect the needed change."

You can learn more about Gleason's foundation here.

Assistive Technology Promotes Independence for People in Nursing Facilities

March 13, 2013 by Disability.Blog Team

By Guest Blogger Chava Kintisch, Staff Attorney and Assistive Technology Project Director, Disability Rights Network of Pennsylvania

Many people with disabilities living in nursing facilities cannot operate a manual wheelchair or communicate through speech. However, people in these facilities can gain independence through Medicaid-funded assistive technology, such as power wheelchairs and augmentative communication devices. This independence can help support their transition back into the community.

According to the Assistive Technology Act of 2004, 29 U.S.C. § 3002, an assistive technology device is “any item, piece of equipment or product system, whether acquired commercially, modified or customized, that is used to increase, maintain or improve functional capabilities of individuals with disabilities.” This includes durable medical equipment (DME) and an unlimited range of other items that people with disabilities use in their daily lives. Assistive technology services include evaluation, adaptation, training, repairs and maintenance.

Generally, a nursing facility should pay for assistive technology when a person is living in that facility and receives Medicaid. The Nursing Home Reform Act requires a nursing facility that participates in Medicaid to provide services “to attain or maintain the resident’s highest practicable physical, mental and psychosocial well-being.” Services include specialized rehabilitative services, such as physical therapy, occupational therapy and speech-language therapy. Nursing facilities should also provide services to maintain or improve abilities in daily activities, including the ability to bathe; dress; groom; transfer; ambulate; toilet; eat; hear; see and use speech, language, or other functional communication systems. All of this can require the provision of appropriate DME and other assistive technology.

About 15,000 nursing facilities nationwide participate in Medicaid and are subject to these requirements. You can use the Nursing Home Compare tool to find out if a particular nursing facility participates in Medicaid.

Your state may also have programs to encourage nursing facilities to provide appropriate DME. However, nursing facilities that participate in Medicaid should provide medically necessary DME even if these incentives don’t exist in that state. For example, Pennsylvania provides additional Medicaid payments to nursing facilities for certain medically necessary custom and expensive DME, and allows people to take the equipment with them if they leave the facility. However, regulations state that nursing facilities must pay for all medically necessary DME, even if they are not given this additional Medicaid payment.

A 2003 State Medicaid Director Letter addresses ways that states can pay for medical equipment under Medicaid to aid transition of people from nursing facilities back into the community. Check with your state Medicaid office to find out if the assistive technology can go with the person if or when he or she moves out of the facility and into the community. Besides the Pennsylvania program described in the paragraph above, Pennsylvania Medicaid will pay for all medically necessary equipment and supplies for use in the community once the person has a discharge date.

Visit the national assistive technology and transition portal to find out what strategies advocates in your state have used to promote assistive technology for people in nursing facilities. This portal was developed by protection and advocacy agencies and state Assistive Technology Act programs to provide information and models for advocacy initiatives.

In Pennsylvania, the Disability Rights Network of Pennsylvania (DRN) worked with Liberty Resources, Inc., a center for independent living, to increase the provision of evaluations and power wheelchairs at a 450-bed public nursing facility. Staff members then developed an online toolkit using their experiences from this effort. DRN also worked with Pennsylvania’s Initiative on Assistive Technology to increase access to evaluations and augmentative communication devices by nursing facility residents statewide through assessment of communication needs.

Mobility and communication are the means to freedom. Residents of nursing facilities should have access to the full range of medically necessary assistive technology to promote independence and transition to the community. Medicaid law can ensure that this happens.

For More Information:

• To find out about Medicaid in your state, visit http://www.benefits.gov/benefits/benefit-details/1618.

• For information about the Disability Rights Network of Pennsylvania, visit their website at http://www.drnpa.org/ or find them on Facebook at https://www.facebook.com/DRNPA.org.

• To find your state’s Protection & Advocacy Agency, visit http://www.ndrn.org/en/ndrn-member-agencies.html.

Additional Articles of Interest from the Disability Rights Network of Pennsylvania:

• Augmentative Communciation Device Funding for Childing – What Parents Need to Know
• Power of Attorney

Chava Kintisch is a staff attorney and Assistive Technology Project Director for the Disability Rights Network of Pennsylvania (DRN). She practices exclusively in the area of civil rights for persons with disabilities, representing individuals with disabilities in order to help them gain access to assistive technology and home and community-based services under Medicaid. She can be reached at ckintisch@drnpa.org. This project is funded by a grant to the Disability Rights Network under Protection and Advocacy for Assistive Technology.