Wednesday, October 24, 2012

Stewart Gordon has found his voice through a Speech Generating Device

The 39-year-old Prince George resident has cerebral palsy and the disability prevents him from being able to talk via conventional means. Now that he's equipped with a computer loaded with cutting edge technology, thanks to Communications Assistance for Youth and Adults (CAYA), he can tell friends and family exactly what's on his mind.
"He's able to communicate with other people, rather than us having to tell them what Stewart wants," Stewart's sister Ethel-lyn said. "It allows him to interact more with other people."
Stewart takes his computer everywhere he goes, from worship services at St. Michael's Anglican Church to his regular bowling outings.
When asked how he felt about his new speech aid, Stewart picked "leave it here" from his preprogrammed list of responses to indicate how important the technology has become to his daily life.
CAYA is a provincially funded organization that helps clients over the age of 19 in need of augmentative or alternative communication aids find the right equipment and pay for the devices. It currently helps more than 700 clients province-wide and is aimed at helping young adults who have left the education system.
In order to get the most out of the program, family members or caregivers need to input important phrases into the machine for the user to select. In Stewart's case, Ethel-lyn played a big role in making sure the most important words were available for her brother to select.
"Stewart can't access the device if it's not accessible, and the family is responsible for that," said Barbara Kayter, a speech pathologist who works with the Gordon family through CAYA.
The options can be constantly updated as needed, so if Stewart finds something missing from his list he can ask his sister or another family member to add it.
Until he got the technology last year, Stewart communicated by answering 'yes' or 'no' to questions by moving his head one way or the other. Although his family understood him and it allowed him to get his message across, it was time consuming for both him and his caregivers as they had to play a game of 20 questions to narrow down what he was trying to request.
The new technology works with sensors on Stewart's forehead, which works as a mouse. The movements of the sensor are captured by a camera mounted on top of the computer. By moving his head ever so slightly, Stewart can select from a menu which holds categories organized thematically - for instance he can select different types of food from one list or clothing items from another. Once he's picked the category, there are various word and phrase options to choose from.
All of Stewart's friends are also in the system and he's created personalized greetings for each of them.
"Hi Todd, what's cooking?" Stewart said, showing off one of his favourite selections for one of his regular bus drivers.
The device does more than just helps Stewart, who lives at home with his mother Jean, speak with family, friends and caregivers. It also gives him more independence by working as a television remote, a light switch and device he can use to listen to his favourite music - he loves the bagpipes.
The technology also has some safety benefits for Stewart. It's now much easier for him to ask for help if he's not feeling well.
"He can now say if he's hurting or has a headache," Kayter said.
Clients in need of the speech assistance technology are first assessed by speech pathologists with CAYA who then try to find the proper device for each unique situation. For some patients it could be something they squeeze or push to select the appropriate computer icon, others like Stewart work better with the sensor placed on their forehead.
"He was able to do it all so quickly," Kayter said. "He was a relatively easy client to assess."
CAYA then provides the equipment and training on how to use it for both the client and the caregivers. The speech pathologists also provide follow-up care with the client and families to make sure everything is working the way it should.
Even with the computer aid, it can take Stewart some time to get his message out. Because of the precision required to move the mouse around, he sometimes selects the wrong icon as he works he way to the intended menu. Kayter said anyone speaking with him needs to be patient and let him get to what he wants to say in his own time rather than trying to speed things up and selecting for him.
"The analogy is it would be like going into someone's mouth and pulling their tongue around," she said.
The computer and camera also must be placed directly in front of Stewart to work properly, which makes it difficult for him to sit face-to-face with people. When a friend at a restaurant asked Stewart if he would move his computer so they could see each other better, he replied "No, I like it."
"For Stewart it's more important to be able to communicate than to see somebody," Kayter said.
For more information on CAYA, including how to apply for assessment, visit

Settlement Eases Rules for Some Medicare Patients

Article from the New York Times

Joshua Bright for The New York Times
Rosalie J. Berkowitz, 81, who was denied home-health coverage by Medicare because her condition caused by multiple sclerosis was not improving, was a plaintiff in a class-action lawsuit.
WASHINGTON — Tens of thousands of people with chronic conditions and disabilities may find it easier to qualify for Medicare coverage of potentially costly home health care, skilled nursing home stays and outpatient therapy under policy changes planned by the Obama administration.

In a proposed settlement of a nationwide class-action lawsuit, the administration has agreed to scrap a decades-old practice that required many beneficiaries to show a likelihood of medical or functional improvement before Medicare would pay for skilled nursing and therapy services.
Under the agreement, which amounts to a significant change in Medicare coverage rules, Medicare will pay for such services if they are needed to “maintain the patient’s current condition or prevent or slow further deterioration,” regardless of whether the patient’s condition is expected to improve.
Federal officials agreed to rewrite the Medicare manual to make clear that Medicare coverage of nursing and therapy services “does not turn on the presence or absence of an individual’s potential for improvement,” but is based on the beneficiary’s need for skilled care.
Judith A. Stein, director of the nonprofit Center for Medicare Advocacy and a lawyer for the beneficiaries, said the proposed settlement could help people with chronic conditions like Alzheimer’s disease, multiple sclerosis, Parkinson’s disease, stroke, spinal cord injuries and traumatic brain injury. It could also provide relief for families and caregivers who often find themselves stretched financially and personally by the need to provide care.
“As the population ages and people live longer with chronic and long-term conditions,” Ms. Stein said, “the government’s insistence on evidence of medical improvement threatened an ever-increasing number of older and disabled people.”
In many cases, she said, the denial of coverage led to a denial of care because most people cannot afford to pay for these services on their own.
Neither she nor Medicare officials could say how much the settlement might cost the government, but the price of expanding such coverage could be substantial.
Dr. Lynn Gerber, director of the Center for Study of Chronic Illness and Disability at George Mason University in Virginia, called the settlement “a landmark decision for Medicare recipients with chronic illness and especially those with disability.”
“Disability frequently accompanies many chronic conditions,” Dr. Gerber said, “and we often have no cures, so people are likely to experience progressive disability. Rehabilitation, physical and occupational therapy and skilled care are incredibly important in maintaining a person’s functional ability, performance and quality of life.”
The lead plaintiff, Glenda R. Jimmo, 76, of Bristol, Vt., has been blind since childhood. Her right leg was amputated below the knee because of blood circulation problems related to diabetes, and she is in a wheelchair. She received visits from nurses and home health aides who provided wound care and other treatment, but Medicare denied coverage for those services, saying her condition was unlikely to improve.
Another plaintiff, Rosalie J. Berkowitz, 81, of Stamford, Conn., has multiple sclerosis, but Medicare denied coverage for home health visits and physical therapy, on the ground that her condition was not improving. Her family said she would have to go into a nursing home if Medicare did not cover the services.
The proposed settlement, negotiated with lawyers from the Justice Department and the Department of Health and Human Services, was submitted last week to Christina C. Reiss, the chief judge of the Federal District Court in Vermont. If she approves it, as expected, she would have authority to enforce it for up to four years.
Asked about the proposed settlement, Robert D. Reischauer, a public trustee of the Medicare program, said: “Unquestionably that would increase costs. How much, I can’t say.” Other independent experts expressed similar views.
While the settlement is likely to generate additional costs for the government, it might save some money too. For example, physical therapy and home health care might allow some people to avoid more expensive care in hospitals and nursing homes.
Charles S. Miller, a Justice Department spokesman, and Erin Shields Britt, a spokeswoman for the Health and Human Services Department, said government lawyers had no comment.
The changes will apply to the traditional Medicare program and to private Medicare Advantage plans. They apply to people 65 and older, as well as to people under 65 who qualify for Medicare because of disabilities.
The Obama administration initially urged the judge to dismiss the lawsuit. Medicare officials denied that they had a formal policy requiring beneficiaries to show their conditions would improve.
However, in a separate lawsuit in Pennsylvania, Medicare officials argued the reverse. In order for Medicare to cover skilled nursing care, they said in a legal brief, “there must be an expectation that the beneficiary’s condition will improve materially in a reasonable and generally predictable period of time.”
The same standard, in nearly identical language, is found in guidelines used by some Medicare contractors, which review and pay claims on behalf of the government. In a typical case, Medicare terminated coverage of skilled nursing care and physical therapy for an 81-year-old woman because she had “exhibited a decline in functional status.”
Under the settlement, the federal court in Vermont will certify a nationwide class of more than 10,000 Medicare beneficiaries whose claims for skilled nursing and therapy services were denied before Jan. 18, 2011, when the lawsuit was filed. Many of them will have an opportunity to have their claims re-examined under the revised standards.
Plaintiffs in the case include the National Multiple Sclerosis Society, the Parkinson’s Action Network, Paralyzed Veterans of America and the National Committee to Preserve Social Security and Medicare, an advocacy group.
Neither the Medicare law nor regulations require beneficiaries to show a likelihood of improvement. But some provisions of the Medicare manual and guidelines used by Medicare contractors establish more restrictive standards, which suggest coverage should be denied or terminated if a patient reaches a plateau or is not improving or is stable. In most cases, the contractors’ decisions denying coverage become the final decisions of the federal government.

Device Designed for Special Forces Commandos allows Quadraplegics to Get Outdoors

The leading Agilite device, knows as the “Human Backpack” origionally designed for evacuating wounded soldiers gives disabled people worldwide new found mobility

A device created by leading Israeli/American tactical and rescue gear company Agilite that allows soldiers to carry an injured comrade on their backs has accidentally found an entirely new market sector. Nicknamed the “Human Backpack", the Injured Personnel Carrier or IPC (see video here) is the brainchild of Israeli/American firm Agilite.

“When our IPC was being bought by individuals across the world we weren’t entirely sure why. We put out an email to our customers asking why they’d bought it and we were astounded by the results. From Quadraplegics to a Danish teenager using it to carry his epileptic friend when he suffers an attack, we realised that in many cases it was civilian care-givers buying it to make disabled people’s lives easier.” Said Elie Isaacson, Director of Strategic Development at Agilite.

The IPC is being used to enable disabled people to reach higher levels of activity in the outdoors. Dieter Marzinger, a quadraplegic C4/5 from South Africa described the experience of being safely underwater in a pool again as a feeling of “zero gravity.”

At the same time the IPC was being bought by the US Marines and British Special Forces, this device was also being used to take disabled children hiking for the first time and allow others the ability to be taken up and down stairs and into swimming pools more easily. “We designed it to save lives in life or death situations but were delighted to find out that it can improve diabled peoples’ quality of life too.” Says Isaacson. The IPC also provides the capability of evacuating senior citizens from a fire in a retirement home or hospital when elevators are not in use.

The firm, which primarly designs and manufactures equipment for military, law enforcement and rescue companies would be honored and delighted to custom-adapt or custom design mobility equipment specifically for disabled people.