Posted in the January/February, 2011 edition of Stroke Connection Magazine

A poll of stroke patients commissioned by the American Heart Association a year ago that found stroke survivors and their families face significant challenges in the healthcare system. Among the survey’s key findings were that a whopping 69 percent of stroke patients reported difficulty paying for medical care. Of those who said they had difficulty paying for medical expenses, 85 percent reported delaying or putting off needed care or skipping or reducing their medicine. Forty percent of survivors reported difficulties with their insurance plans in the past couple of years and 36 percent had gone without insurance coverage at some point since their stroke.

“Research has found that stroke patients without health insurance have up to a 50 percent higher risk of death who are underinsured also have up to a 50% percent higher risk of death compared to stoke patients with insurance, and patients who are underinsured also have poorer outcomes,” said AHA President, Ralph Sacco, M.D., chairman of neurology at the University of Miami and Jackson Memorial Hospital. “These statistics reinforce why reform or our healthcare system is critical to stroke survivors and those at risk for stroke. We need to make sure all Americans with stroke and cardiovascular disease have accessible, affordable and high quality care.”

Now that healthcare reform legislation — the Patient Protection and Affordable Care Act – is law, many survivors are concerned how it will affect them. While the law is not perfect, the good news is that it contains a number of provisions that should make healthcare coverage more accessible, affordable and adequate for survivors. There are several new protections that stroke patients with private health insurance coverage (or seeking to buy private coverage) should know.

PRE-EXISTING CONDITIONS:
As of Sept. 23, 2010, for children under age 19 (and beginning Jan 1, 2014 for adults), no one can be turned down for insurance coverage because of pre-existing conditions such as stroke or high blood pressure Also as of this past September, insurance plans can no longer cancel coverage when a person becomes sick.

New health plans, called Pre-Existing Condition Insurance plans, were launched last summer. Intended to help bridge the gap leading up to Jan. 1, 2014, these plans are available for people who have a pre-existing conditions and have been without health insurance for at least six months. The details of these plans depend on the state where you live.

COVERAGE REQUIRED:
Beginning Jan 1, 2014, all Americans will be required to have health insurance. In exchange, insurance companies will be prohibited from charging higher premiums because of health status or pre-existing conditions.

Those who don’t receive coverage through an employer will be able to purchase a private plan through state-based health insurance exchanges beginning no later than Jan 1, 2014. Theses exchanges will be one-stop marketplaces where you can compare plans and choose the one that is best for you from a menu of options.

For more information or to read the whole article in Stroke Connection Magazine, January/February 2011 edition, sign up for this free subscription by clicking on Stroke Connection Magazine

For more information on this law click on Healthcare.gov

An article posted in Advance for Speech-Language Pathologists & Audiologists, September 20, 2010 in Vol. 20 • Issue 19 • Page 13

Researchers have developed a method to predict post-stroke recovery of language by measuring the initial severity of impairment. Being able to predict recovery has important implications for stroke survivors and their families as they plan for short- and long-term treatment needs.1

“These results indicate that if we know the extent of the initial impairment following stroke, we can predict with remarkable accuracy how patients will function 90 days later,” said Ronald Lazar, PhD, of New York-Presbyterian Hospital and Columbia University Medical Center. “We have established the first reliable metric of the current standard care for post-stroke language treatment and a standard against which future treatments can be compared.”

More than 1 million Americans have aphasia, and stroke is the most common cause, according to the National Institute of Neurological Disorders and Stroke. For many years it was thought that the combination of stroke size, patient age and education, and specific characteristics of language deficit were predictive of recovery, but no reliable metric had been established.

The recent study involved patients in the Performance and Recovery in Stroke (PARIS) database, which is based at the Neurological Institute of Columbia University Medical Center and New York-Presbyterian/Columbia.

Researchers used the Western Aphasia Battery (WAB) to assess language function at 24 to 72 hours after stroke onset and then again at 90 days. Among patients with mild to moderate aphasia after acute stroke, recovery improved to about 70 percent of their maximum potential recovery as long as they received some aphasia therapy. Recovery was defined as the change in WAB score between baseline and 90 days.
This study was funded by the National Institutes of Health.
Reference
1. Lazar, R.M., Minzer, B., Antoniello, D., et al. (2010). Improvement in aphasia scores after stroke is well predicted by initial severity. Stroke, 41: 1485-88.

To read, email, print this article, click on Advance Web .

An invitation from The Academi Of Life to spend a night with Dr. Jill Bolte Taylor, a Harvard-trained Neuroanatomist, Lecturer and Author on:

May 11, 2011 at The New York Society of Ethical Culture in New York City.

“Dr. Jill Bolte Taylor got a research opportunity few brain scientists would wish for: She had a massive stroke, and watched as her brain functions — motion, speech, self-awareness — shut down one by one. An astonishing story.”

Dr. Jill Bolte Taylor is a Harvard-trained and published neuroanatomist. Her brother’s brain disorder and schizophrenia led Dr. Taylor to dedicate her career to studying severe mental illnesses. She is the author of the New York Times bestselling memoir My Stroke of Insight: A Brain Scientist’s Personal Journey. Dr. Taylor gave a presentation at the TED Conference, which has been watched by over ten million and has become the most viewed TED Talk to date. She was chosen as one of TIME Magazine’s 100 Most Influential People in the World.

Dr. Taylor was the premiere guest on Oprah’s Soul Series webcast and was interviewed by Oprah and Dr. Oz on The Oprah Winfrey Show. She’s now an artist as well as a scientist, creating anatomically correct stained-glass replicas of brains that are sold as fine art and also travels the country on behalf of the Harvard Brain Bank as the “Singin’ Scientist.” Dr. Taylor is an adjunct lecturer at the Indiana University School of Medicine.

o Learn how to get your brain to do what you want it to do.
o Learn who is who inside of you.

Join us for a special evening of inspirational storytelling, spiritual conversations, and meaningful music: an evening of “uncommon depth.” Jill will be joined by critically acclaimed singer/songwriter Carrie Newcomer. Presenting on the same stage, author and songwriter weave a seamless story of insight into the wonders of the human brain and the resilience of the human spirit through their own stories of change and transformation.

The evening is designed to be a completely enveloping experience as Jill and Carrie engage the audience in an intellectual discussion, while taking them on a powerful journey into the consciousnesses of their minds, bodies and hearts and at the same time, creating a space of safety, joy and celebration of life.

‘Pay attention to what you are thinking, and then decide if those are thoughts that are creating the kind of life you want created.’ – Jill Bolte Taylor

Register and find out more by clicking on The Academi of Life

The National Aphasia Association and The Association for Frontotemporal Dementias are proud to be a part of this important conference for both caregivers and persons with Primary Progressive Aphasia that is being hosted by Northwestern University’s Cognitive Neurology and Alzheimer’s Disease Center.

The conference will be held Monday, March 21st, 2011 at The Robert H. Lurie Medical Research Center of Northwestern University in Chicago, IL. The program will include a Keynote Address by Bradley F. Boeve, MD, a professor of Neurology at the Mayo Clinic in Rochester, MN; approaches to assessing and treating mood and behavioral symptoms by Deborah Reed, MD, assistant professor of Psychiatry at Northwestern University; a number of breakout sessions for caregivers, and so much more.

For more information, or to register to attend, please click here .

Below is Aphasia Hope Foundation’s upcoming Professional Forum Series for 2011

January – Maura Silverman, MS, CCC-SLP; Triangle Aphasia Project, North Carolina
February – Kristine Lundgren, PhD., CCC-SLP; Boston University School of Medicine
March – Nan Musson, MA, CCC-SLP; BC-NCD-A, VA Medical Center, Gainesville, FL
April – Mary Beth Clark, MS/CCC
May – Audrey Holland, Ph.D., CCC-SLP, BC-NCD; University of Arizona
June – Anne Ver Hoef, MA, CCC-SLP; Alaska
July – Roberta J. Elman, Ph.D., CCC-SLP, BC-NCD; Aphasia Center of California
August – Carole Pomilio, MA, CCC-SLP; Speech Language Teacher, Kyrene Schools, Arizona
September – Claire Penn, Ph.D., CCC-SLP; ETH University of Witwatersrand, South Africa
October – Leonard LaPointe, Ph.D., CCC-SLP; Florida State University
November – Margaret Forbes, MS, CCC-SLP; University of Pittsburgh Medical Center
December – Anita Halper, MA, CCC-SLP, BC-NCD; Rehabilitation Institute of Chicago

Princeton, New Jersey (January 7, 2011). Lingraphica, maker of the Lingraphica® speech-generating device for aphasia, announces the release of four new SmallTalk apps on the Apple App store.

Designed for people with aphasia, an impairment in the ability to use language, these apps provide a vocabulary of pictures that talk in a natural human voice.

Our New SmallTalk Apps:

SmallTalk Conversational Phrases: words and phrases commonly used in conversations, such as greetings, responses, requests, and statements about well-being.
SmallTalk Daily Activities: words and phrases related to the activities of daily living, such as bathing, dressing, grooming, and leisure.
SmallTalk Pain Scale: pain descriptions and images from the Wong-Baker FACES pain scale.
SmallTalk Intensive Care: words and phrases patients can use to communicate with medical providers in the ICU.
The Rest of the SmallTalk Family:

Other Lingraphica apps available on the Apple App store are SmallTalk Aphasia Female; SmallTalk Aphasia Male; SmallTalk Dysphagia; SmallTalk Oral Motor Exercises; SmallTalk Phonemes; SmallTalk Consonant Blends; SmallTalk Common Phrases; SmallTalk Days, Months, Dates; and SmallTalk Letters, Numbers, Colors.

Lingraphica’s chief executive officer, Andrew Gomory, is delighted to be offering additional SmallTalk apps for use on the iPod touch, iPhone, and iPad. “These SmallTalk apps provide affordable communication solutions,” said Mr. Gomory. “We are pleased to be able to offer our growing family of apps to aid people with their day to day activities.”

Lingraphica-The Aphasia Company™ is the leading provider of speech-generating devices for people whose ability to speak or understand words has been impaired by a stroke or brain injury. With the Lingraphica they can communicate with picture icons that speak words and phrases in a natural human voice, or they can practice speech using videos and language exercises. The Lingraphica is Medicare reimbursable. It is available for a no-obligation trial. For more information call 888-APHASIA (888-274-2742) or visit www.lingraphica.com

Resources and Education for Stroke Caregivers’ Understanding and Empowerment, or RESCUE for short, is a lifeline to help caregivers “keep their head above water.” Stroke onset is very sudden and new caregivers are not always prepared for this new role. The caregiver may be overwhelmed and feel like the person who needs to be rescued. The RESCUE website provides stroke caregivers with information and resources to help them better care for their loved one. The website also gives caregivers information to help them take care of themselves. There are 44 easy-to-read “fact sheets” about stroke and stroke caregiving on this website. They can be downloaded and printed. The 44 fact sheets will be available in Spanish soon. Read More .

NJ Aphasia Study Commission Bill Passed
Dear Friends,

We are pleased to announce on behalf of our friends in New Jersey that the Bill to form an Aphasia Study Commission has been signed by Governor Chris Christie. We hope that this will encourage all of you in other states to push for similar legislation. If you are interested and would like some guidance, please let us know by replying to this email.

Below are comments by Karen Tucker from the Adler Aphasia Center in Maywood, NJ, who was instrumental in the passing of this Bill. Big thanks also goes out to the wonderful people at Kean University’s Institute for Adults Living with Communication Disabilities for partnering with the folks at Adler Aphasia Center to help push along this legislation.

Dear Friends & Supporters,

I am very excited to report that the bill to establish an Aphasia Study Commission in NJ was signed by Governor Christie on Thursday, 1/6/2011.. The bill was sponsored by Senators Weinberg & Allen and Assembly people Huttle, Johnson, Wagner, Voss and Diegnan. It is the first such commission in the nation and is an important first step in helping to improve the quality of life for New Jerseyans living with aphasia.

I want to thank all of you who took the time to write a letter in support of the bill. Your voices were heard and acknowledged by this signing. We know how prevalent and under-recognized aphasia is in our community….in our nation….again- a significant step toward raising awareness about aphasia.

The bill provides for a 12 person commission of professionals and consumers to look at the prevalence of aphasia in NJ, the needs of people with aphasia and is charged with making recommendations to meet those needs. Once the commission is appointed, they have one year to complete their study. I will keep you posted on their progress and share the report with you once it is published.

Thank you again for your continued support as we bring aphasia out of the shadows and into the public forum so that the 1,000,000 Americans and their families that live with condition can live with dignity, understanding and a full and richer life.

With sincere thanks and gratitude,

Karen

Karen Tucker, Executive Director
Adler Aphasia Center

The NAA would like to share information about this precedent setting case in MA. We are proud to have been involved from the onset and invited to sign on as an “Amicae Curiae” in the amicus brief filed by the National Disability Rights Network (NDRN) in the McDonough appeal.

An “amicus brief” is a document filed in a case by someone who is not a party to the case but is interested in the outcome. National organizations sometimes file an amicus brief in a case that has the potentially of having an impact on other persons who are similarly situated to one of the parties to the case. It is an opportunity to inform the court about broad policy issues that it might consider in deciding the case.

This case involves a crime victim who was denied an opportunity to have the crime prosecuted due to a communication disability that the court failed to accommodate. Other crime victims with communication disabilities in Massachusetts might be affected by the result in this case, and more broadly courts in other states might be influenced by the outcome. Given the potentially broad impact that this case might have on other crime victims with communication issues, an amicus brief is an important vehicle for informing the court about reasonable accommodations that courts can provide which make it possible for individuals to testify despite their disabilities.

Through the unwavering commitment of her attorney, Wendy J. Murphy, and the support of NAA friends including Jerry Kaplan and Paul and Judy Dane, Ms. McDonough has retained her rights. This has ensured that disabled crime victims are entitled to accommodations to ensure their equal access to Justice in criminal cases. In particular, this is a strong, positive step in advocacy for the more than 1 million Americans living with aphasia.

The NAA thanks all those involved especially Ms. Murphy and NAA President Emeritus, Alan Bandler.

Below is Ms. Murphy’s summary of the events of the case for your information:
Earlier this month, Ruby McDonough was in a Massachusetts court fighting for her rights as a crime victim with a disability. Ruby, who has aphasia, was sexually assaulted in 2009 by a male nurse’s aide at the nursing home where she has lived since suffering a stroke more than ten years ago.

As with many aphasic persons, Ruby has trouble communicating in narrative style. But she had no trouble telling her family, the staff and the police exactly what happened.

The man accused of violating Ruby was charged with sexually assaulting Ruby in early 2009. During pretrial proceedings his attorney asked that Ruby be subjected to a competency hearing. A court-appointed expert evaluated Ruby and found her to be mentally competent, though noted that she would need accommodations to help her communicate at trial, such as being allowed to answer in yes and no fashion, use gestures and images, and being allowed sufficient time to reply when more of a narrative was necessary.

The court did not allow ANY accommodations, and Ruby was made to testify at her own competency hearing without any help. Thus, when defense counsel asked things like “tell us what happened”, Ruby struggled. At one point, defense counsel stood between Ruby and the perpetrator and asked whether Ruby could “see” the man who abused her. Clearly use of the word “see” in such circumstances is unfair, and a fully abled person could simply have responded, “no, I can’t SEE him because you’re blocking my view” – but he is right there behind you”. Ruby knew the attorney was trying to trick her, so she became frustrated and emotional. The court ultimately found her not competent to testify.

This is when I became involved as Ruby’s private attorney. A lawyer from the Victims’ Rights Law Center had been assigned to represent Ruby at the competency hearing, but that attorney filed no pleadings, objected to nothing that occurred during the hearing and never once argued that Ruby’s rights under the Americans With Disabilities Act were being violated by the court’s refusal to afford Ruby any accommodations. Some advocacy groups as a matter of policy refuse to aggressively represent the interests of crime victims, which is why it is critically important for a victim to ask around and to get feedback before agreeing to utilize the legal services of certain “victims’ rights” groups.

I filed a special appeal for Ruby to the Massachusetts Supreme Judicial Court, arguing that Ruby’s rights under the ADA had been violated, and that the violation caused her to be illegally adjudicated incompetent. After a hard fought battle during which the prosecutor and defense both opposed our effort, we finally prevailed in August, 2010. The court not only ruled that Ruby’s rights had been violated, it established brand new rules to ensure that the rights of all disabled crime victims will be better protected. The landmark decision was a first of its kind court ruling and makes clear that persons with disabilities not only have a right to things like wheelchair ramps to ensure they get IN to the courthouse, they have a right to accommodations that will enable their “full and equal” testimonial and participatory rights as WITNESSES in criminal cases. Given that persons with disabilities are disproportionately victimized by criminal violence, in part because perpetrators anticipate they will not be held accountable – especially if the victim has a communication disability – this new court ruling means that many more victims will be allowed to testify and criminals will be better deterred from selecting vulnerable individuals to be their victims.

After announcing its new decision, the Supreme Judicial Court sent the case back to the trial court where Ruby’s rights had been violated. When we went back to the trial court in October, we expected the judge to rule that Ruby would now be allowed to testify, but instead the judge announced that Ruby would have no such opportunity because the perpetrator, an illegal immigrant, had been sent to Miami for immediate deportation. The judge also refused to simply reverse the illegal ruling that had labeled Ruby “incompetent”.

I decided to file another appeal to the state supreme court, after which we went back again to the trial judge in November, hoping that this time the perpetrator would be present so that Ruby could have her day in court.

To our delight, the perpetrator showed up, and the judge completely changed his attitude, finally acknowledging not only that Ruby was entitled to all sorts of accommodations, but also that she would indeed be allowed to testify at trial. The judge essentially ruled that because the basis for the earlier decision on competency had failed to recognize Ruby’s capacity to testify with accommodations, she had a right to take the stand at trial and utilize all reasonable accommodations to facilitate her communications as a witness against her assailant.

The trial date is now set for January 12, 2011.

Needless to say, Ruby is very excited that her dignity has been restored and her voice will be heard. Win or lose, Ruby’s strength and perseverance in this case have helped ensure equal justice for all persons with disabilities.

We are grateful that members of the aphasia community were in court with Ruby during the last two court hearings. We hope to see support for Ruby again on January 12.

The aphasia community has been extremely helpful in more ways than I can say in this brief summary.

Thank you – and Happy Holidays.

Wendy Murphy

The National Aphasia Association
Ellayne Ganzfried, Executive Director
Amy Coble, Info/Admin Coordinator

An article in Advance Magazine By Jason Mosheim

Widespread for centuries, music therapy took root in the United States in the 1950s. By the early 1970s, most of the work in music therapy on the east coast had been split into two categories: early childhood development-to address pre-educational skills in children with Down syndrome, autism and learning disabilities-and psychotherapy, to help patients deal with mental health issues.

Clinicians also tried to tap into the power of music for a third area: geriatric care. At the time, however, music simply was used to connect with individuals or help them pass the time. “There wasn’t any insight or understanding of how and why music was effective as a therapeutic tool,” said Concetta Tomaino, DA, MT-BC, executive director and co-founder of the Institute for Music and Neurologic Function (IMNF) and senior vice president of Music Therapy at Beth Abraham Family of Health Services in the Bronx, NY.

She realized the power of music when she worked in a nursing home and received positive reactions to it from people with end-stage dementia who were catatonic or agitated. “When I played a specific song, not only did they respond but they recognized the sound as music, which told me that they still had the ability to cognitively process auditory information specifically related to familiar music,” she told ADVANCE.

This discovery led her on a journey parallel to that of other music therapists who were beginning to observe a much stronger connection between music and function that went beyond the psychotherapeutic aspects. “There was something specific about how the brain processed the music or how music gained access to parallel networks,” she said. “This was 30-something years ago, so nothing in the scientific literature even hinted at that.”

Advance Web .