Supporting Students who have a hearing impairment and other disabilities: Appropriate AAC Options

This month Deaf Education: Educational Enhancement for the Field of Deaf Education is hosting a topical conversation on AAC supports for students who have a hearing impairment along with other disabilities. The focus of the conversation is on supporting students better, sharing success stories and talking about ways to continue making progress in this area. Please feel free to join the conversation and add your thoughts. There have been many changes in the field through traditional supports as well as some of the advanced technology and applications which have emerged. We are all using them in novel ways. This forum provides an opportunity to share this information and engage each other in some of the successes we have seen as a result.

Follow-up to Medicare & Medicaid Changes for AAC Funding: "... Join letter to CMS urging clarification of recent Speech Generating Device policies"

Don’t Let Medicare Take the Ability to Communicate Away from People Living With Severe Disabilities! Act Today! 
Recent Medicare changes are drastically reducing or totally inhibiting access to the technologies that provide people living with disabilities the ability to communicate. These are some of Medicare’s most vulnerable beneficiaries.  

ACT TODAY: Contact your Representative and Senators and ask them to sign the letter “Ensure ALS Patients Retain Access to Critical Communication Tools Ensure; Join letter to CMS urging clarification of recent Speech Generating Device policies.”
Sweeping changes have been put in to place in 2014. The critical issues at hand:

Capped Rental
As of April 1, 2014, Medicare implemented a policy that will begin denying payment for many of the medically necessary speech generating devices (SGD’s) used by people with ALS (Lou Gehrig’s Disease), Cerebral Palsy, Muscular Dystrophy, Rett Syndrome, spinal cord injuries, spinal muscular atrophy and other impairments, when they enter a health care facility, such as a skilled nursing home, or hospice. Taking these highly specialized devices from this patient group leaves them no way to communicate at the patient’s most vulnerable moments and at a time when medical attention is critical.
Unlocked Devices 
Effective September 1, 2014, many severely disabled individuals will lose the ability to access SGD functionalities that provide them with the opportunity to communicate and have contact with loved ones and medical professionals who are outside the patient’s home. Medicare has stated that it will not allow  individuals using Medicare-provided speech generating devices to use their own funds to "unlock" the devices, even though this is done at no additional cost to Medicare. The ability to “unlock” devices allowed beneficiaries the ability to communicate and participate beyond the confines of their rooms through email, environmental controls, internet, and text messages. As of September 1st, Medicare will no longer pay for any device that has even the potential to be unlocked to allow communication that is not face-to-face interaction with other individuals directly in front of device. This change terminates any direct private communication to the doctor, therapist and clinical teams via email, from caretakers via text and even first responders in an emergency situation.

Eye-gaze Access 
Currently, Medicare has been routinely denying coverage of critical eye-gaze technology for many SGD-eligible beneficiaries. This access method is the only point of access to operate speech generating devices for some individuals, including those with ALS. Both a doctor's and speech language pathologist's evaluation is necessary and documented in order for the patient to receive the benefit. However, Medicare continues to routinely deny eye-gaze access even when it has been deemed medical necessity by two trained and certified medical professionals. The appeals process is now backlogged for years in the Medicare system. During that time, those who have been diagnosed with ALS have precious few months before symptoms onset that limit their ability to speak while awaiting their appeal outcome. After years of waiting for an appeal to Medicare, the eye–gaze coverage is routinely allowed, but individuals may have already passed without the opportunity to communicate with friends and loved ones or participate in their own care during the final stages of their lives. 

We cannot allow this to happen. We need to work together to change this decision.

How Can You Help? Your support is imperative NOW.

We need you to speak up for those who can’t and we need quick action to stop these devastating changes from impacting patients who are in desperate need of access to speech generating devices. We are asking you to please contact your local House Representatives and Senators, asking that they sign a bi-partisan newly introduced letter to Marilyn Tavenner, head of the Centers for Medicare and Medicaid Services (CMS) to address these changes. The Dear Colleague letter is titled:

"Ensure ALS Patients Retain Access to Critical Communication Tools; Join letter to CMS urging clarification of recent Speech Generating Device policies"

The letter will be open for only one week; your members of Congress must sign-on by Wednesday, August 27th. It is currently sponsored by Honorable Member of Congress Cynthia McMorris-Rodgers, Honorable Member of Congress John Tierney, Honorable Member of Congress Erik Paulsen and the Honorable Senator Collins. Every phone call, e-mail, office visit matters! Please forward this to everyone who will act. If one of these is your member of Congress, please contact them and thank them for their support on this matter of critical importance.
(Taken directly from announcement from Tobii/Dynavox)

FIND YOUR REPRESENTATIVE

FIND YOUR SENATOR
 

Memory Assistive Glass

Northeastern student project looks at ways to help people with memory challenges identify people they know. This type of programming using Google Glass has many broad applications and the potential for meeting unique individual memory needs. The article makes some wonderful points about having instructions immediately available, names of people etc. The increased dignity and independence this offers has the potential to open opportunities for individuals who would most likely need immediate support by another person to maintain employment, participate in recreational activities as well as general safety within the community and home. Enabling engineers work on many projects of this nature. We have had the pleasure of working with them in our school. Looking at ways to use current technology in new ways and making low cost effective assistive technology which can support a variety of needs. It comes down to the ability to have access, independence and freedom. As we continue to innovate, it is very exciting to think about what may be possible when we think outside of the box.  

Assistive Technology Alternative Financing Program

The Assistant Secretary for Special Education and Rehabilitative Services proposes a priority under the Assistive Technology Alternative Financing Program. The Assistant Secretary may use this priority for competitions in fiscal year (FY) 2014 and later years. This priority is designed to ensure that the Department funds high-quality assistive technology alternative financing programs that meet rigorous standards in order to enable individuals with disabilities to access and acquire assistive technology devices and services necessary to achieve education, community living, and employment goals.

There is an open comment period which ends on June 11^th, 2014. It is important to follow the instruction on commenting listed on the Federal Registrar’s site. This is the actual commenting site for other regulations as well: http://www.regulations.gov/#!home

Here is some additional information on the changes: http://www.tmcnet.com/usubmit/2014/05/14/7829734.htm

Please take the time to comment on such a critical topic and potential resource for students who have significant access needs.

Important Update: Changes to Medicare & Medicaid Impact AAC & Power Wheelchair Access

Please share this information with as many people as possible. I have copied and pasted the notice I received from Tobii ATI. This is a follow-up to the Proposed Changes to Medicare & Medicaid Impact AAC & Power Wheelchair Access Post on8/23/13.
We all need to act!

Hello,

I am hoping that you will be able to support and assist the President of Tobii ATI and Executive Board Member for the Assistive Technology Industry Association (ATIA), Tara Rudnicki during her next trip to Washington DC to visit our elected members of government.  

The Centers for Medicare and Medicaid Services (CMS) has decided, in their quest to cut spending, they have and will continue to implement new guidelines of coverage for recipients.  The horrendous changes that will come into effect will be a significant detriment to those whom we are so honored to serve and support each day.

Tara has, for several months, been working with the entire industry, consisting of professionals, industry associations, clinicians, recipients, researches, etc. to work together as one voice to advocate for those who may not have the ability to do so.

1.       On April 1, 2014 Medicare changed their policy from purchasing a speech generating device to renting them under a “capped rental” procedure.

a.       rental means that the SGD will not be owned until the caped rental period has been satisfied. (13 months) The device will have to be ‘locked’ and can no longer be unlocked.  Therefore, the device may not be used for anything other than face to face communication. No e-mail, no environmental control, no phone, no Skype, and no web access.

b.      If the beneficiary goes into a hospice program, long term care facility, and or extended hospital stays, the SGD is no longer a covered rental and has to be returned. Therefore, when a beneficiary is at their most vulnerable time they will not be able to actively participate in their own care due to the inability to communicate their medical concerns or necessity.

2.       On September 1, 2014 CMS is also mandating any SGD that has the capability of word processing, web/e-mail, remote control and the like will not be covered at all.

a.       http://www.cgsmedicare.com/jc/pubs/news/2014/0214/cope24807.html

b.      http://www.alsa.org/news/archive/medicare-coverage-for-speech.html

3.       Add insult to injury, we have been receiving many many denials for eye gaze access on the SGD. Medicare reviewers are saying that this is not needed and think people are using it to play games and surf the web, not recognizing that with most of our clients, eye gaze is the only access method that will successfully work for them. They are not paying for beneficiaries to play on their computers all day.  This practice is denying and delaying our very special population access to communication.

Tara has asked for as many letters from as many people as possible to set forth an impact statement to CMS and Congress. She is looking for letters from users, their families, caregivers, professionals such as SLPs and OTs and even co-workers of users. She believes each and every one of our industry would be there advocating if possible.  Would you be willing to write a letter or an e-mail about how a SGD and specifically eye gaze helped you or  your family? Here are the kinds of things she has asked for:

If you are comfortable explaining your need for a communication device for example diagnosis had did that just changed your life.

What/how has a communication device (SGD) changed their lives?

What impact has eye tracking had?  If they didn’t have eye tracking what would things be like?

Has eye tracking been instrumental in giving those and ability to work longer? Stop abuse, physical, mental, or monetary? Communicate an emergency? Able to communicate with their children, doctors, or clergy or other users?  (or any other examples)

What should Capitol Hill be aware of if patients going forward will be denied eye gaze across the board?  What if all claims would have to be appeal all eye tracking?  (CMS appeals right now at three year wait, yes that is not a typo)

How would losing the ability to use Skype, email, text, phone, to teleconference with their doctors/family/friends, and internet impact them?

If you have the ability to support us please remember to include your name, the town and state you are a resident of.

It would be helpful but not required if you list your age.

None of us can overturn this alone.   We need to work together.  Most importantly we have to make sure the powers that be know and understand who they are affecting with such poor cost cutting decisions which in the long run will cost them millions more.

We are hoping you will be able to show your support.    We know this decision is detrimental to the quality of life you deserve. 

           

Time is of the essence I am afraid.  Can you contribute your letter by Monday May 12, 2014?  E-mail it to me if you could. Tara.rudnicki@tobiiati.com

On behalf of Tobii ATI,  I sincerely appreciated your help in this. If these regulations go into effect unchanged the consequences will be devastating to many pAls.  The impact your words can make a difference to thousands.  Let’s stand together and say NO .

THANK YOU in advance!                              

AAC Ferret APP to Make Comparisons Across Other AAC APPS

The AAC Ferret at by Spectronics allows you to make comparisons between AAC apps. It will be free until May 16^th!

This has the potential to be a wonderful resource for individuals who use AAC, families and professionals. With all of the AAPs out there and no ability to have a trial of the full application at this point, this particular app could assist in providing a more efficient and productive way to identify what might be appropriate for a specific person. The lite versions of apps often do not have enough of the core features to fully assess their potential use. This would at least add another source of data for AAC decision making.

Insurance Funding - Apple Based Communication Device

FRS Custom Solutions has produced an Apple based communication device that is more consistently funded by health insurance. This is exciting news given the ongoing struggles and inconsistencies in having Apple products funded by insurance. The next step would be to make this eye-gaze accessible as well, similar to the Windows 8 tablet option produced by Tobii ATI.

A beautiful vision of the future…..

Our children are treasures. They are a source of incredible joy which is often complicated by many challenges and fears. Nothing ever fully prepares us for what we may face. Having a child with a disability encompasses all of these same feelings.  This video is a beautiful way to help all of us understand the joy and futures which await. It is also a reminder that we are able to connect with each other in so many ways now, that no one is alone, and there are communities of people who are there to share in both the joys and challenges, no matter what the situation may be. There is incredible hope, resilience, strength and perseverance that all of us have within, especially when we do this together.

Synthetic Voices, AAC & Our Humanity

Rupal Patel provided a very enlightening TED Talk on synthetic voices.  For people who are not able to speak and require the use of advance augmentative and alternative communication systems, they are often confined to the voice selections available on that particular device. Individuality is very limited. Dr. Patel has looked as this barrier in a very different manner. By using a combination of the individual’s voice and a voice donor, a more individualized voice can be developed which better represents that of the person who will be using it on their advanced device. This is absolutely amazing and allows the personality and uniqueness of each person to be expressed through their device in a much more naturalized manner which is personal.  Please take the time to watch the progress which has been made. Additional surrogate talkers are needed. Please consider becoming involved in this incredible project. If you are interested in helping please sign up at VocalID.org.

 

Dynamic Shape Display

The MIT Media Lab is developing a new tool which will allow for tangible interactions through the use of a typical computer. InForm from the MIT Tangible Media Group looks at integrating tangible interactions in a much more dynamic manner. After reviewing this, I am wondering if this could be a better way to make connections with students who may need to be at home for long periods of time due to illness. It would be more than a video presence. There could be some level of interaction with materials to enhance distance learning. Students could feel and be more connected with their classroom. There is a lot of room for creativity here in making the experience quite unique.