This week the Senate Finance Committee engaged in three daylong sessions to discuss various policy options that may be included in a Health Care Reform bill later this year.

As reported by Congressional Quarterly, Senator Baucus, the Chairman of the Senate Finance Committee, was not very enthusiastic when asked whether committee members had reached consensus on any issues. However, he did say that he sensed some common ground on broader issues and believes his committee is moving towards a “convergence” on these issues that are expected to be debated next month.

As always, BIAA will continue to monitor any health care reform related progress. If you have not yet taken action and emailed your Senators and Representatives regarding the brain injury guiding principles, you may still do so by clicking the following link:

http://capwiz.com/bia/home

Lawmakers are now developing policy options that could become part of the national health care reform, but currently no legislation has been introduced and there are no specific bills to support or oppose. In anticipation of both proposed and final legislation, BIAA has adopted five guiding principles (below) designed to aid Congress in drafting language that would increase access to treatment for individuals with brain injury.

Guiding Principles:

1. Recognize brain injury is a disease.
2. Focus on medical necessity.
3. Provide access to the full treatment continuum.
4. Use accredited programs, interdisciplinary team of qualified/specialized clinicians, and appropriate treatment settings based on patient and family choices and aspirations.
5. Hold private insurers accountable for the premiums they collect; avoid Medicare/Medicaid as first option for coverage.

These principles are explained in a Brain Injury Health Care Pledge that can be signed and supported by members of congress who want to make sure that the unique needs of those with brain injury are addressed in the final health care plan. Our goal is to encourage all Representatives and Senators to sign this pledge to raise awareness and understanding of how proposed policies could impact people with brain injury, family members, researchers and clinicians.

On May 6, 2009, BIAA circulated an action alert that included the pledge in the body of the message advocates send to their Representatives and Senators. If you haven’t taken action by asking your members of congress to support the pledge, you may still do so by clicking on the following link:

http://capwiz.com/

BIAA’s full position paper explaining each guiding principle, an executive summary, and a detailed article from The Challenge! regarding our positions on health care reform can also be found on our website by clicking on the link below.

http://www.biausa.org/

In support of BIAA’s health care reform campaign, BIAA leaders and staff participated in several high level meetings in the House, Senate, and the White House to encourage support for these principles.

BIAA gained the support of the Co-Chairmen of the Congressional Brain Injury Task Force (Rep. Pascrell, Rep. Platts), who circulated a letter to their House of Representatives colleagues encouraging them to sign the Brain Injury pledge. BIAA will continue to reach out to members of both the House and the Senate to secure brain injury treatment in health care reform proposals.

This week, both House and Senate Budget Committees adopted budget resolutions creating the framework for this year’s spending bills.

Although both plans largely adhere to the priorities that President Obama laid out in February, they also scale back some of his spending and tax measures for fiscal year 2010, with the House proposing $7 billion less in discretionary spending and the Senate trimming about $15 billion.

Notably, the House resolution, adopted late Wednesday night, contains reconciliation instructions for legislation to implement President Obama’s health and education policies. More specifically, these provisions would allow Congress to move both an overhaul of the health care system and changes to education programs through the budget reconciliation process, a fast-track procedure that limits debate and bars filibusters in the Senate. The Senate resolution includes no similar provisions.

The President’s full budget, including a detailed appendix that would include specific programs, is expected to be revealed next month. Congress will then review the proposed spending levels for these individual programs in order to begin assembling FY10 Appropriations measures.

BIAA will continue to monitor these developments and take action accordingly.

On February 25, the House passed the FY 2009 omnibus spending bill covering the Department of Health and Human Services, the Department of Labor, and the Department of Education. These agencies are currently being funded at 2008 levels under a continuing resolution that is set to expire on March 6, 2009. The Senate is expected to consider the bill this week.

Department of Education

The FY09 omnibus bill allocates nearly $108 million for the National Institute on Disability and Rehabilitation Research (NIDRR) which supports disability research, demonstration projects, and related activities for individuals with disabilities.

The bill includes language directing the increase in funding to be used to restore the number of rehabilitation research and training centers (RRTCs) focusing on issues of traumatic brain injury, arthritis, neuromuscular disease and spinal cord injury.

Centers for Disease Control (CDC)

As a component of the TBI Act, the line item specification in the omnibus legislation allocates $6.137 Million for CDC, an increase of $428,000 from Fiscal Year 2008.

National Institute of Health (NIH)

The omnibus bill provides just over $30 billion for the National Institutes of Health (NIH), over $1 billion more than the budget request, and the first time the agency’s one year budget has exceeded $30 billion. After accounting for this increase and the additional temporary funding in the recent stimulus legislation, NIH will have $11 billion over their existing budget to spend over the next two years.

The NIH has reported that this influx of funds will allow the agency to capitalize on unprecedented scientific opportunities with almost 10,600 new research grants. Before this infusion, funding for NIH projects had been at critically low levels.

Most importantly, the bill provides nearly $1.6 billion for the National Institute of Neurological Disorders and Stroke, $52 million more than the 2008 level.

(Pyles, Powers, Sutter, & Verville appropriations memo, February 26, 2009)

Health Resources and Services Administration (HRSA)

Another component of the TBI Act funding, HRSA State Grants for TBI and Traumatic Brain Injury Protection and Advocacy Services, together received nearly $9.9 million, an increase of about $1.1 million dollars from last year. It is unclear at this point the allocation for each component.

Social Security Administration

To address the mounting backlog of disability claims at the Social Security Administration, improve claims processing times, and support field offices, the bill provides $10.5 billion to combat these pitfalls.

(Pyles, Powers, Sutter, & Verville appropriations memo, February 26, 2009)

On Thursday, Congressmen Pascrell and Platts hosted a briefing featuring Col. Michael Jaffee of the Department of Defense, DOD Defense Center of Excellence (DCoE), Defense and Veterans Brain Injury Center.

The briefing highlighted several growth factors and accomplishments that had taken place over the course of 2008. Notably, the symposia and collaboration between DOD and the National Football League TBI and concussion experts as well as the International Conference on Behavioral Health and Traumatic Brain Injury that was held on October 12, 2008 in conjunction with the Congressional Brain Injury Task Force. With more than 100 international experts, the areas of focus included research, education, assessment, family, and treatment.

Looking forward, Col. Jaffe announced several new partnerships fostered to help those with TBI including with the American College of Radiology, National Academy of Neuropsychology, The Kennedy Center, the Professional Golf Association, and the National Football League. These partnerships will continue to foster activities that will help educate both servicemen and civilians about the symptoms and dangers of traumatic brain injury.

This week former U.S. Senator Tom Daschle withdrew from consideration to become the next Secretary of the Department of Health and Human Services. Some consider Daschle’s withdrawal to be a blow to efforts to enact timely reform of the nation’s health care system, as he was viewed as someone uniquely qualified to take this project on, due to his knowledge of health policy and many close relationships in the Senate.

In addition to nominating him to become Secretary of Health and Human Services, President Obama had also planned for Daschle to serve as head of a newly created White House Office of Health Reform.

Daschle’s abrupt withdrawal came after he was questioned about his failure to pay all the taxes that he owed after leaving the Senate in 2005. BIAA anticipates that there will be a new nominee announced within the next few weeks and we will continue to monitor the situation closely.

The month of January in Sacramento has sadly been like the most previous recent months in Sacramento when it comes to the Legislature and Governor successfully dealing with California’s Budget crisis. That is: no resolution to date.

The $41 billion Budget deficit has now over shadowed any and all legislative actions and plans.

We are currently among every other represented group in Sacramento trying to get legislators and the Governor’s attention to our issues, and unfortunately, with little success. To date, less then 300 bills have been introduced, wherein during a typical Session over 900 would have been introduced. Not a single committee hearing has taken place on ANY legislation other than proposals related to developing a Budget solution.

Until the Budget crisis is resolved, no other legislative issues will be addressed. We continue our efforts with leaders in the Senate to promote our Brain Injury Initiative proposals. Once the Budget is addressed, we will be on our way.

People who received a mild electrical current to a motor control area of the brain were significantly better able to learn and perform a complex motor task than those in control groups. The findings could hold promise for enhancing rehabilitation for people with traumatic brain injury, stroke and other conditions.

The study is presented in the January 20, 2009 early online edition of the Proceedings of the National Academy of Sciences, and was conducted by researchers at the National Institutes of Health (NIH). The research team from NIH’s National Institute of Neurological Disorders and Stroke (NINDS) worked in collaboration with investigators at Columbia University in New York City and Johns Hopkins University in Baltimore.

Motor skills, which are used for activities from typing and driving, to sports, require practice and learning over a prolonged period of time. During practice, the brain encodes information about how to perform the task, but even during periods of rest, the brain is still at work strengthening the memory of doing the task. This process is known as consolidation.

Subjects in this study were presented with a novel and challenging motor task, which involved squeezing a “joy stick” to play a targeting game on a computer monitor, which they practiced over five consecutive days. During practice, one group received 20 minutes of transcranial direct current stimulation (tDCS) and the other group received only a 30 second “sham” stimulation. tDCS involves mild electrical stimulation applied through surface electrodes on the head, and works by modulating the excitability, or activity, of cells in the brain’s outermost layers. In this study, Dr. Cohen and his team directed tDCS to the primary motor cortex, the part of the brain that controls movement.

Over the five-day training period, the skill of the tDCS group improved significantly more that that of the control (sham) group, apparently through an effect on consolidation. During the three month follow-up period, the two groups forgot the skill at about the same rate, but the tDCS group continued to perform better because they had learned the skill better by the end of training.

Please join the California Brain Injury Association for a gala event at the 3rd Annual Greek Dinner & Dance For Thought at the Assumption Greek Orthodox Church, Cultural Center Hall in Long Beach. This event will kick off Brain Injury Awareness Month in California and provide the opportunity to advocate for individuals with brain injury who are not able to advocate for themselves.

The attendees will be greeted with the sound of Greek music by Synthesi and hors d’oeuvres, followed by a traditional dinner by Thank Goodness It’s Sophia, and entertainment by a youth Greek Dance Group. Dr. Rick Adams of the Long Beach Memorial Medical Center will emcee the event and a Silent Auction is also planned.

Tickets are $100 per person and are now available for purchase online from the CALBIA website at: www.calbia. org or by completing the form below and mailing a check to the CALBIA office.

In December 2001, my husband of 9 ½ years sustained a severe hypoxic/anoxic brain injury. At the time, we had a 7- year-old daughter and a 23- month-old son. Up to that point, we were like every typical family going with the flow of the ups and downs of daily life. The events of December 27, 2001, changed all our lives forever.

Following Jeff’s injury, he has received exceptional care. Although frustrating at times with all of the red tape, we were fortunate that this was a worker’s comp case, as they have approved care for Jeff that many aren’t able to receive. He was fortunate to undergo two years of intensive rehab at a facility in California, however, due to the severity of his injury there hasn’t been a lot of carryover, and now, because to the level of care needed, he resides in a care facility in Fresno. Jeff is 100% dependent on others for all activities of daily living. It may seem like there’s not much more to say but that is far from the truth.

When Jeff sustained his brain injury, I lost my best friend, sounding board, dance partner, and comic relief. Our daughter lost a father that she loved more than anything. She was the apple of his eye and Jeff absolutely adored her. Our son lost the opportunity to know a father that loved his little boy more than the world. Our family and friends lost a brother, nephew, friend and comedian they all loved to hang out with. Jeff lost the ability to live his life like we all want to and take for granted. He is unable to remove an eyelash from his eyes, pick up or hug his children, and do the most mundane of tasks like brushing his teeth and combing his hair.

But it still doesn’t end here. What we have gained is a look into the world of brain injury. No, it isn’t always a pretty sight but it is one that so many live in and so many more haven’t a clue exists. Jeff is not able to walk or talk, but he is able to laugh and cry. He has no problem letting you know he is upset, whether it is through yelling or a very familiar scowl. He will flash you a smile when he is happy that brings giggles from all who see it; mostly, because he couldn’t do a lot of this for the first few years of his recovery.

We are only able to see each other about once a week since we do not live in the same town and I work, and take care of our very active children, preside over a brain injury foundation in Jeff’s name, and a newly organized support group to help others dealing with the life changing effects of brain injury. Jeff comes home for visits with us and we travel frequently to see him. With some help, he plays Guitar Hero with his kids and we tell him about the happenings of a teenage daughter and 9-year-old son. Plans are in motion for our daughter’s 8th grade graduation. Our daughter Gabbi wants him to be at her graduation but due to his condition, he can’t. He can, however, attend the rehearsals and see his daughter getting ready for graduation. We try to incorporate life into all of our visits. Whether it is playing catch with Alex by placing a basket in Jeff’s lap and letting Alex toss a Nerf ball to him or bringing him home to watch his daughter be baptized, where he began sobbing once the worship team began singing. Whenever someone asks if we think he knows what is going on, we can answer without hesitation, “Yes!”

Early on, during many of our walks and talks, Jeff’s sister and I questioned, “What would people do if they didn’t have family like Auntie M, experience, or advocacy through the worker’s comp carrier, etc.?” I tend to be a “bulldog” when it comes to my husband’s care and condition, especially in the beginning when we were still trying to take it all in. My husband’s injury left me a single parent, an advocate for him and, now an advocate for others with brain injury. Jeff’s injury has shown me that I am stronger than I thought I was when first presented with this change in life plans.

Together with family and friends, we started the Jeff Barnes Brain Injury Foundation in 2005. The idea behind the formation of the foundation was to provide advocacy for survivors, family members and others affected by brain injury, but also to educate the public and bring about awareness.

Our biggest and most successful form of education has been outreach through bicycle rodeos and visits to preschools. We have fit over 2,000 children with helmets in Tulare County. We, in conjunction with the Visalia Police Department, hold multiple bicycle rodeos each year. We were successful in procuring a grant through First 5 of Tulare County to purchase helmets and provide education to children under age 6. In June 2008, we began a brain injury support group in Visalia. Although the support group is facilitated by the foundation board, therapy staff from Kaweah Delta’s Rehabilitation Hospital has joined in and a staff member attends each meeting. The support group meets monthly and alternates between sharing sessions and education. Our numbers have increased from two people to over 15 regular attendees.

As a young adult, I wanted to get involved in the community but didn’t really know of the opportunities. Jeff’s injury changed that for me. His brain injury has brought about involvement in so many different worthwhile charities and community events. Although the Jeff Barnes Brain Injury Foundation is still a smaller public charity in the Central Valley of California, I know that it is doing great things and will continue to do so because of the passion Jeff created in us. Our children have been able to see the good that can come from something so tragic and life changing and have become much more understanding and compassionate individuals. I have found that I have learned to be much more understanding of the person that begins to cry so easily, becomes frustrated over what I would consider something minor, or raises his voice when you tell him his paperwork is late. I know that everyone has a story. Everyone has a loss. You don’t know where the person that raised his voice or the one that began to cry is going or where they just came from.

You don’t know if they just received some horrible, life changing news. Jeff’s injury has taught me so many lessons about compassion for others that can only be learned from something as significant as a brain injury.

For more information about the Jeff Barnes Brain Injury Foundation or the newly formed support group in Visalia, please contact Cheri Barnes at (559) 679-3702 or go the foundation website at www.jbarnesfoundation.org