On Tuesday, February 24, 2009, President Obama addressed Congress and the Nation to announce an overall plan to spend $634 billion on healthcare reform.

The President’s address simply provided a general overview of his budget that will be released in its entirety later this spring. Given that this was just an overview, no specific traumatic brain injury funding levels were released, however, BIAA will continue to monitor the situation this spring when the full detailed budget is presented.

This week, efforts to take up the FY09 appropriations omnibus bill were stalled further due to the consideration and conference of the Economic Stimulus Legislation. The house will likely wait until after the Presidents Day Recess to tackle appropriations.

BIAA will continue to watch the developments of the omnibus closely as we near the March 6th deadline.

Congress is gearing up to clear their spending and tax cut measure aimed at stimulating job creation and the health of the economy as early as Friday. The goal is to have the legislation on President Obama’s desk by Presidents Day.

It’s Easy as 1-2-3:

1. Register for the February 9-10th First Annual Conference, Moving the TBI Agenda: Change, Challenges & Collaboration, sponsored by the California Department of Mental Health and the Traumatic Brain Injury Advisory Board by going to www.regonline.com/TBIConference. Registration deadline is January 30. Special rates for individuals with TBI, caregivers and students; special rates for one day only; and limited financial assistance are available.

2. Make your hotel reservations with the Holiday Inn Capitol Plaza, Sacramento . Request TBI Conference to get the Conference rate. Phone: 1-800-HOLIDAY. The cut off date for the block of rooms is January 17, 2009.

3. Attend the conference and learn from the experts:

• Tamara Bushnik, Ph.D., Project Director for the Traumatic Brain Injury Model System Santa Clara Valley Medical Center
• Jeffrey S.G. Englander, M.D., Clinical Director for the Traumatic Brain Injury Model System at Santa Clara Valley Medical Center
• Geoffrey T. Manley, M.D., Ph.D., Associate Professor in Residence at the Department of Neurological Surgery, School of Medicine, San Francisco General Hospital
• Ted Puntillo, Deputy Secretary, Department of Veteran Affairs
• Debra Rose, Ph.D., Professor and Co-Director for the Center for Successful Aging
  and Fall Prevention Center of Excellence at California State University
• Ronald M. Ruff, Ph.D., Clinical Neuropsychologist & Rehabilitation Psychologist, San Francisco Clinical Neurosciences and University of California San Francisco
• And many more ….

People who have suffered traumatic brain injuries and who are unable to speak or move are being given the first chance to com­municate using just the power of thought – and a laptop loaded with sophisticated algorithms.

The ground-breaking system has been devised by a computer researcher at the University of Portsmouth. Dr Paul Gnanayutham has devoted his life to giving people locked into silence after major brain injury the power to communicate but though his system works it will remain a life­line for only a lucky few unless he wins funding.

The system he has devised uses patients’ brain waves and eye and muscular movements (together called bio­potentials) to move a cursor on a computer. The targets a person can point the cursor at on the prototype device could include ‘yes’, ‘no’, ‘thank you’, a switch to turn on an electrical appliance such as a tele­vision, and a link to an internet page of the patient’s choice, though the targets can be changed to anything a person prefers to say, or watch, or do.

This simple but life-changing breakthrough is not the first time scientists have found a way of using a person’s brain waves to navigate a cursor but Dr Gnanayutham’s is one of the first to be used on real people with serious brain injuries, rather than confined to a laboratory and tested on the able-bodied. All that is now needed for it to reach more people is funding to turn it into a product that can bought and used without expert help.

He said: “This technology has been around but very few people have used it for anything worth­while, I worked with traumatic brain injured participants who were paraplegic, non-verbal and tube fed to give them a voice and the ability to say ‘yes’ or ‘no’ on a computer screen by using their bio-potentials.

“Learning how to navigate using their facial muscles or brainwaves isn’t easy and can take months. I worked for eight months with one young man who hadn’t communicated after his brain stem was broken in an accident. His mother knew he was ‘there’ and wasn’t giving up on her son but there had been no sign, no movement, noth­ing until he started using the brain wave system.”

“It turned out he was very angry – he didn’t want his father to visit but had been unable to say so; his fiancée visited him but became increasingly distant as she went on with her life; only his mother and one nurse felt he was trying to communicate with them. It is the patience of very few people – those who really love or care for a person like this – who make the difference. If it hadn’t been for the man’s mother and one nurse who were sure he was trying to communicate he would have been ignored.”

“Hospital staff look after these people – they feed them, wash them, shave them and so on but they do not have a voice. They have no way of saying ‘actually don’t turn off the lights please because I want to stay awake for another hour’, or ‘no, I don’t want visitors today’.”

But the breakthrough has other problems, he said, because many healthcare staff and even families of brain injured victims don’t want the patient to be given a voice. It is easier to care for them and keep them fed and clean if they don’t have the power to express a prefer­ence, to complain or ask for things to be done differently.
The system is non-invasive and works by attaching probes on an alice band worn around the head picking up brain waves (Electroencephalography or EEG), muscles (Electromyography or EEG) and eye movements (Elec­trooculorgraphy or EOG) signals at the forehead. These signals are then fed into an amplifier which can cut out external noise and listen only to the bio-potentials of the person wearing the electrodes and then to the serial port, so the computer just sees the brain-body interface as the cursor’s control.

It cannot be used with patients who are heavily sedated but if a person can move their eyes left and right they can navigate a cursor on a computer left and right; if they can raise their eyebrows they can navigate a cursor to go up and down; and lastly, if they are taught to imagine their brain­waves can be ‘read’ by the com­puter they can learn to navigate the cursor through the power of their thought.

Dr Gnanayutham has seen people who haven’t communicated with anyone for months or even years finally gain the power to ‘speak’.

He said: “These people have thoughts and preferences and are the same as us in their heads and thoughts but they can’t communi­cate. They can’t tell anyone what they are thinking and are forced to watch the world but be locked away from it as well. Everything is working in their minds but they can’t get it out. It is very frustrat­ing for them and for those who love them and care for them.

“I have made it practical so it can be used by anyone. It is not for a laboratory experiment; it works for real people with locked in syndrome and gives them a voice.”

Though the options for communi­cating are limited to a few simple words it is the first time such people have had any such options at all and their loved ones are able to be more outspoken in their gratitude.

“I have been thanked by parents and the husbands or wives of some people I have helped to whom a simple ‘yes’ or ‘no’ is the first conversation they have had with their loved one in years.

The research Dr Gnanayutham has carried out involves so many complicated permissions being obtained that much of his work was done abroad. In the UK if a patient is aged under 18 the parents can give permission for the system to be tried on their child but if they are over 18 it is almost impossible to get permission to try the system.

“Many people are studying this in labs but nobody else is taking it to the people who really need it, they aren’t going out into the field,” He said. “I want people to be able to use it without doctors and without me. I want to give them their voice back. Only then will it be a real success.”

Dr Gnanayutham has just one body-brain interface machine and he lends it to people he has taught to use it for as long as he can before another patient’s needs are greater. His dream is for the system to be developed so anyone could buy it off the shelf with an instruction manual.

BIAA Continues Advocacy As 2008 Winds Down

As this year comes to a close, the Brain Injury Association of America (BIAA) would like to thank you for your support during 2008 – a year which included many accom­plishments in advocacy on behalf of individuals with brain injuries and their families. Chief among these accomplishments, of course, was successful re authorization of The Traumatic Brain Injury Act!
Yet, as we reflect during this holi­day season on the advocacy achievements we are thankful for this year, we also know that much more needs to be done to improve brain injury care and services in this country.

BIAA is uniquely positioned to carry this important message into 2009, and to the incoming Obama Admin­istration, as well to continue its lead­ing advocacy role on Capitol Hill, urging the nation’s lawmakers to ade­quately address the public health epi­demic of brain injury.

The BIAA was recently invited to meet with members of the Obama Administration transition team to discuss disability and health care policy issues, as well as to share BIAA’s leading public policy pri­orities. On Tuesday, December 16, BIAA’s President and CEO, Susan Connors, and BIAA’s National Medical Director, Dr. Gregory O’Shanick, represented the organi­zation at this meeting. They com­municated to the members of the Obama team that BIAA’s chief public policy concern centers on improving access to health care for survivors of brain injury. Specifi­cally, Ms. Connors and Dr. O’Shanick described how every day, hundreds – perhaps thousands – of brain injury survivors are deprived of the acute care, rehabil­itation, and related services they need to regain maximum function and quality of life after their injury. They further explained that this is largely due to the widespread use of unfair and unjust tactics by health insurers, such as inconsis­tent pre-admission policies, arbi­trary limits on scope and duration of care, outright coverage denials, absurd payment rates, and capri­cious post-treatment audits. The hope was expressed to the Obama team that any effort to reform the nation’s health care system must address these delays and denials of access to care, as our nation is needlessly increasing permanent disability among people who sus­tain brain injuries.

Ms. Connors and Dr. O’Shanick also discussed with the Obama team the importance of maintain­ing and increasing the health and function research portfolio, includ­ing the TBI Model Systems of Care program, within the National Institute on Disability and Rehabil­itation Research (NIDRR), as well as the need for TRICARE to offi­cially cover cognitive rehabilita­tion for returning service members.

As 2009 approaches, BIAA encourages you to visit President-Elect Obama’s webpage on health care reform and submit your own comments about how to improve the nation’s health care system to better address the needs of brain injury survivors.

Save the Date

In support of Brain Injury Awareness Month in March of 2009, plans are underway for the following annual events:

3rd Annual Greek Dinner & Dance For Thought on March 7th in Long Beach. Tickets are $100 per person and will be available on the website soon or by contacting Paula Daoutis at the CALBIA office at (661) 872-4903.

2nd Annual Statewide Walk For Thought. This year, walks will be held in 4 locations across the state on two different dates. Beginning in early January, individuals wanting to register, sponsor, or help CAL­BIA to solicit donations will be able to do so from the CALBIA website. See below for dates and locations:

March 14, 2009
Bakersfield – Yokuts Park
Sacramento – William Land Park

2008 Bakersfield “Walk For Thought”
March 28, 2009
San Diego – Mission Bay Park at De Anza Cove
Oakland – Lakeside Park (Lake Merritt)
Also on March 28th, the Brainstorming 4 Us Sup­port Group will be hosting their 3rd Annual Walk 4 Thought at Spring Valley Lake in Victorville.

CALBIA continues to participate in the CA TBI Advisory Council, whose purpose is to advise State leaders and legislators about the needs of people with TBI. The Council is hosting a conference titled, “Moving the TBI Agenda: Change, Challenges & Collaboration” to be held on February 9-10, 2009 in Sacramento.
The conference topics include:

Promising Research
Emerging Issues
Returning Troops/Veterans with TBI
Elderly & TBI
Best Practices
Community and Long-Term Supports
Public Policy and Advocacy
California Services and Resources

Registration fees are $195 per person and a reduced fee of $100 per person for persons with brain injury, care­givers and students. Limited financial assistance is available. For more information, call Yvonne Shifflette at the CA Department of Mental Health at (916) 654­2147 or e-mail her at Yvonne.shifflette@dmh.ca.gov Registration is available online at:
www.regonline.com/TBIConference