Under current Medicare rules, beneficiaries can receive up to $1,880 per year of speech and physical therapy (combined) and another $1,880 for occupational therapy provided in non-hospital, outpatient settings (in 2012). Beneficiaries who require more services can use an exceptions process to obtain them before the start of the next year. However, this exceptions process is set to expire on February 29, 2012.

Congress extended this deadline for two months (from December 31, 2011 to the end of February 2012) through legislation passed at the eleventh hour just before the end of last year. However, this only ensures that stroke survivors covered by Medicare have access to additional therapy services until February 29. Congress must extend, or reauthorize, the exceptions process in order for beneficiaries to take advantage of it beyond this date. If Congress fails to act and the exceptions process expires, Medicare will only pay for rehabilitation services up to this capped amount—even if additional rehabilitation services are considered medically necessary by a healthcare professional.

You can help ensure that stroke survivors covered by Medicare have access to an adequate level of rehabilitation services. Send a message to your members of Congress urging them to preserve the exceptions process. Take action today! Even if you’ve already contacted your members of Congress about this issue, they need to hear from you again to ensure they take action on this issue by February 29.

Once you’ve sent your messages, follow up with your members of Congress to ensure they take action on your request. The Stroke Advocacy Network can help you identify your members of Congress and find phone numbers for their offices (local or in Washington, D.C.). Following up with a phone call will ensure that your request is not only heard but acted on as well.

Visit their website: www.stroke.org .

In response to the flood of calls, texts, postings and emails we have received from people in the aphasia community in the US and around the world, the National Aphasia Association would like to offer information about this condition to the general public in an effort to correct an error of omission in ABC’s coverage of Congresswoman Gabrielle Giffords’ recovery.

First, we would like to express our heartfelt congratulations to Gabby for her recovery so far and offer her, Mark Kelly and their family any ongoing support they might need as they face the challenge of aphasia.
While ABC did an accurate and comprehensive job of explaining aphasia, the program inexplicably never mentioned Gabby’s condition by name. It is aphasia – the inability to read, write, speak or communicate after a stroke or other sudden traumatic brain injury, such as the one Gabby tragically experienced.

Many people with aphasia, their families, friends and caregivers, were very disappointed and frustrated by this omission. Eagerly, they watched that special Monday night edition of 20/20, hoping that finally, a greater awareness and understanding for aphasia would be realized. The general public would finally hear the word aphasia and begin to understand the condition. Unfortunately, the hour-long program never used the word aphasia once, which added to the pain and frustration of the over 1 million people estimated to have aphasia.

It was only during the subsequent Nightline program hours later that night, when Bob Woodruff used the word aphasia when he talked about his struggle with the condition and his understanding and compassion for Gabby’s difficult, but hopeful journey.

We urge ABC and other news media to use the word APHASIA when reporting on Gabby Giffords and other people with the condition. This will help raise awareness and understanding.

Too often, people with aphasia are mistaken for being mentally incapacitated or being under the influence. This is not true. People with aphasia maintain their intellect completely. They have a communication disorder that makes it difficult for them to express themselves and understand language. It is estimated that there are over 200,000 new cases of aphasia every year.

At the National Aphasia Association (a nonprofit organization), we offer free and low-cost support for people with aphasia and their families including:

NAA Hotline (800-922-4622) helps over 4,000 families a year.

www.aphasia.org receives over 12,000 hits per month, helping an estimated 300,000 families a year.

NAA National Registry links to over 440 aphasia US support groups and 210 state representatives.

Emergency Responders Training Program educates first responders how to recognize aphasia and communicate with people who have the condition

Aphasia Friendly Business Program trains businesses and their employees how to interact with customers who have aphasia.

The Aphasia Handbook: A Guide for Stroke and Brain Injury Survivors and Their Families

Aphasia can occur in people of all ages, nationalities, socio-economic backgrounds and equally among men and women. Understanding, patience and a few commonsense strategies will help family, friends, caregivers and the public communicate with people with aphasia:

1) Have the person’s attention before you speak.
2) Minimize or eliminate background noise (TV, radio, other people).
3) Keep your own voice at a normal level.
4) Keep communication simple, but adult.
5) Give them time to speak, resist the urge to finish sentences or
offer words.
6) Communicate with drawings, gestures, writing and facial
expressions.
7) Confirm that you are communicating successfully with “yes” and
“no” questions.
Praise all attempts to speak and downplay any errors.
9) Engage in normal activities whenever possible.
10) Encourage independence, avoid being overprotective.

For more information, media outlets and the public can contact the National Aphasia Association at (800) 922-4622 or (212) 267-2814.

Best wishes to everyone in the aphasia community,

Ellayne S. Ganzfried, M.S., CCC-SLP
ASHA Fellow
Executive Director

Barbara C. Martin
President- Board of Directors

The National Stroke Association is excited to announce their 2011 Raising Awareness in Stroke Excellence (RAISE) Awards winners in the coming days and they wanted to thank everyone who sent in nominations to be considered for the inaugural year. The winners are excited to have their activities highlighted and they are honored to showcase them.

They had a tremendous response to the call for nominations and thank you for sharing these truly amazing efforts being made across the country. It is clear that those of you invested in raising awareness—no matter your reach or resources—are inspirations that deserve support and recognition.

While they are only able to honor a few winners this year, they hope you will join them as they work to establish a devoted and organized community engaged for the long term to raise awareness. You are the reasons why people everywhere are becoming better armed to recognize and respond to stroke.

Watch in the coming days as the 2011 RAISE Awards winners are revealed. The National Stroke Association hopes you share their successes—and your own—with loved ones and others who might be inspired to become a stroke champion

Click Here for survey .

Adrienne Pearson’s information:

(248) 225-7416
pearsoar@mail.uc.edu

Cal State LA Student Union Theatre
August 15, 2011, 5:30pm

The short narrative film Aphasia, starring Carl McIntyre, has been announced as an Official Selection of the 2011 Feel Good Film Festival (www.fgff.org) in California during the weekend of August 12-14 at the historic Raleigh Studios in Hollywood. Aphasia will screen on Saturday, August 13, 2011 at 6:30 pm. Tickets can be purchased online: http://www.brownpapertickets.com/event/187692.

If you are unable to make the Film Festival, Cal State LA & Cal State Northridge are sponsoring a screening on Monday, August 15th at 5:30pm at Cal State LA’s Student Union Theatre. Tickets are $17 and can be purchased online: http://aphasiamoviescreening.uticketit.com/.

Aphasia was written by Jim Gloster, a Charlotte, NC director, actor and writer. Gloster wanted to capture the story of his friend, actor Carl McIntyre who suffered a massive stroke in 2005 at just 44 years of age. As a result, McIntyre lives with aphasia, an acquired communication disorder that impairs a person’s ability to process language but does not affect intelligence.

Aphasia is a double dose of reality told in narrative form. Carl stars as himself and portrays his life story in a powerful and nuanced performance. Aphasia uses comedy and pathos to raise awareness about aphasia and provide hope and inspiration to anyone working to overcome obstacles in their lives. The film recounts McIntyre’s first person experience during the stroke, his recovery and his struggle with his inability to communicate.

For more information about the movie, visit http://aphasiathemovie.com.

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

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

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

Ron Howard plans to direct the filming on “My Stroke of Insight: A Brain Scientist’s Personal Journey.” Read More .

Aphasia was written by Jim Gloster, a Charlotte, NC director, actor and writer. Gloster wanted to capture the story of his friend, actor Carl McIntyre who suffered a massive stroke in 2005 at just 44 years of age. As a result, McIntyre lives with aphasia, an acquired communication disorder that impairs a person’s ability to process language but does not affect intelligence.

Aphasia is a double dose of reality told in narrative form. Carl stars as himself and portrays his life story in a powerful and nuanced performance. Aphasia uses comedy and pathos to raise awareness about aphasia and provide hope and inspiration to anyone working to overcome obstacles in their lives. The film recounts McIntyre’s first person experience during the stroke, his recovery and his struggle with his inability to communicate.

For more information about the movie, visit aphasiathemovie.