Call your Representative Today!

During the week of January 30, the U.S. House of Representatives is expected to vote Wednesday on the Fiscal Responsibility and Retirement Security Act (H.R. 1173) a bill that would repeal the Community Living Assistance Services and Supports (CLASS) Act.

Calling on Congress to Avoid Repeal of the CLASS Act

If you want to help protect the CLASS Act, please call 855-218-2109 to connect with Congress. Here is what you can tell your legislators:

• I strongly support the Community Living Assistance Services and Supports (CLASS) Act. Please oppose H. R. 1173, which would repeal the program.

• The primary public program now covering long-term services and supports is Medicaid.

• The CLASS Act was designed to be a fiscally responsible alternative that will encourage more personal responsibility and give American families a structure for planning for their own long-term care costs.

• Every family needs this protection. No one has proposed a better alternative to CLASS Act for financing long-term services and supports.

• Please allow continued dialogue on the CLASS Act and development of a viable program moving forward.

Background: CLASS addresses the need for long-term care in the United States in a completely voluntary way that honors the need for consumer choice, dignity and independence – without forcing people to impoverish themselves to qualify for Medicaid. If CLASS is repealed without an alternative being put into place, the need for a coordinated long-term care system will only grow, as will the financial strain on Medicaid. The need for the program is reflected in its popularity with the American people. According to a joint Kaiser Family Foundation/Harvard School of Public Health poll, 76 percent of Americans support CLASS – including 69 percent of Republicans, 71 percent of Independents, and 87 percent of Democrats.

• Current attempts to repeal the CLASS Act really have nothing to do with CLASS – they are part of a continuing attempt to bring down health reform. On November 2, 2011, after Senator Thune’s attempt to repeal CLASS without debate or discussion, Senator Sessions stated, “I think this is a death knell for the entire health care concept.”

• Allowing CLASS to be repealed gives health reform opponents a long-sought political victory – without holding them accountable for solutions on long-term care. Opponents have not produced their own viable alternative to CLASS, and are willing to let the millions of Americans in need of long-term services and supports fend for themselves in a broken patchwork of programs.

• Repealing CLASS is no solution at all. Simply allowing CLASS to be repealed does nothing to address the dire need for real long-term care solutions. CLASS is not perfect, but repealing it without replacing it will not solve our growing long-term care crisis. Seniors, people with disabilities, and their caregivers have waited long enough for Congress to focus on this problem.

Preserving CLASS provides a framework for Congress to move forward effectively. This may involve working with some of the fiscally responsible options put forth by the CLASS Act actuary, tweaking or amending the law, and/or developing additional alternatives; but repealing CLASS turns out the light on real efforts to solve the problem.

Progesterone is a hormone that has been shown to have a rapid, neuroprotective effect after TBI. This effect has been strong during pre-clinical, phase I, and phase II trials, and is now in the process of both a national and an international phase III clinical trial, bringing it closer to FDA approval for clinical use. Other clinical trials have begun for the use of progesterone after pediatric brain injury, stroke, and other neurodegenerative diseases.

Some of the potential benefits of progesterone are that it can:
1. Cross the blood brain barrier
2. Be administered as long as 24 hours after the injury and still be effective
3. Reduce swelling and edema
4. Decrease inflammation
5. Protect neurons that might otherwise die
6. Enhance remyelination, the white matter of the brain
7. Reduce potential cognitive, sensory, and spatial deficits

Progesterone is a strong candidate for the acute treatment of TBI, at a time when little else is available. It is not expensive or difficult to administer, and is considered safe for most people.

Stein DG. Is progesterone a worthy candidate as a novel therapy for traumatic brain injury? Dialogues in Clinical Neuroscience. (December 2011).

Chronic traumatic encephalopathy (CTE) is a neurodegenerative syndrome that can develop from repeated impacts to the brain. CTE has been studied in sports such as football and boxing, where athletes develop a long-term pattern of symptoms that are not unlike those of Alzheimer’s syndrome.

Post-traumatic stress disorder (PTSD) has become a common diagnosis in our returning soldiers, but a recent case study suggests that the PTSD may actually be a type of CTE that develops after repeat exposures to blast explosions. In this case study, a soldier who was diagnosed with PTSD committed suicide not long after an honorable discharge. The autopsy of his brain found damage that was surprisingly indicative of CTE.

This case study is important because it may help re-direct the diagnostic guidelines for returning soldiers. It may also help researchers understand the pathology of repeated exposure to blast explosions, as well as the pathology and long-term effects of CTE.

Omalu B, Hammers JL, Bailes J, et al. Chronic traumatic encephalopathy in an Iraqi war veteran with post traumatic stress disorder who committed suicide. Neurosurgical Focus. (November 2011).

Decompressive craniectomy is a surgical procedure that removes part of the skull to allow room for brain swelling after injury. Not long ago, researchers found that this surgery, although commonly performed, did not actually improve outcome in traumatic brain injury patients. However, that study did not specifically look at the outcomes of decompressive craniectomy in children (under age 12) with traumatic brain injury.

A child’s brain is different than an adult’s in a few ways: the size is generally smaller, the head is heavier in relation to neck muscles, and the skull may not yet be completely formed. Injury to a child’s brain in likewise different than an adult’s. Smaller brains are less vulnerable to certain acceleration injuries, but a soft skull is more vulnerable to impact. (These differences are reduced as a child gets older.)

A recent review of past research in children who underwent decompressive craniectomy after a traumatic brain injury found mixed results. Some studies showed both better outcomes, and other studies showed worse. Decompressive craniectomy may remain a controversial surgery, however, some consideration should be given to differences in brain size, development, and response to injury before deciding to proceed.

Appelboom G, Zoller SD, Piazza MA, et al. Traumatic brain injury in pediatric patients: Evidence for the effectiveness of decompressive surgery. Neurosurgical Focus. (November 2011).

Autonomy, a person’s capacity to judge, decide, and act on the basis of their own attitudes and reasoning, is a key concept in the treatment of people with spinal cord injury. Autonomy is generally held to be a fundamental patient right. However, little study has been done about patients’ own individual ideas or experience of autonomy.

When patient perception is taken into account, the picture of what autonomy means in a rehabilitative or household setting becomes more complex. Patients typically have three categories of activities: 1) tasks they would like to delegate, over which they do not wish to retain control; 2) tasks they would like to delegate, but remain in charge of; and 3) tasks they would like to perform themselves.

How tasks get sorted into these categories is a complicated interaction between the patient, his or her environment, and the nature of the disability. There may be social, emotional, or other costs and benefits associated with all of these. For example, a patient may wish to attend a community event. However, to do so would require him to ask for a ride, which he feels encroaches on his independence and may place stress on his caregivers. In addition, sitting in one position for a long time at the event may carry a risk of exacerbating his pressure ulcers.

Rehabilitation professionals can help patients learn to negotiate these processes, and empower their sense of agency.

Van de Velde, D, Bracke, P, Van Hove, G, et al. The illusion and the paradox of being autonomous, experiences from persons with spinal cord injury in the period of their transition from hospital to home. Disability & Rehabilitation. (2001).

California’s continued struggle facing budgetary shortfalls the state government is looking for any possible way to plug the many holes left behind from years of poor budgeting. This action involves a cut to the existing set annual budgeted funds to Med-Cal by a full 10% across the board within the 2011 state budget. The Centers for Medicare & Medicaid Services (CMS) will be announcing their decision on the matter any day now so it is up to the many concerned Californians stepping in to make their voice heard is critical to stopping the implemented cuts. The latest attempt to bail out California includes vital programs such as Medi-Cal which makes it possible for many to get the basic care they need. This is unnecessary and the wrong approach to “balancing” California’s budget.

ISSUE:

Many states are looking to close budget shortfall gaps through decreasing funds going to Medicaid. As the State of California continues to deal with a systemic and debilitating budget shortfall further cuts are being made to Medi-Cal in the 2011 budget that has been passed. The truth is that the plan set out through AB 97 is not a viable means of doing it.

MEDI-CAL REIMBURSEMENT CUTS:

The proposed changes in how they are paid out to Medi-Cal pharmacy providers and specified non Medi-Cal participant are to be reduced by a full 10% per AB 97 section 7. Cuts such as these will not and can not fix California’s budget shortfall. These actions are not only unsustainable they are harmful to an already burdened state economy. The cold hard reality is cuts like this will only result in pharmacies on the community level to either discontinue services to Medi-Cal qualified patients or even in some cases cause them to go out of business. Both of which have a direct impact on the citizens reliant on Medi-Cal for their access to the care they need.

EFFECT ON CALIFORNIA:

The effect that these proposed cuts have on the state are two fold; decrease in revenue and a dramatic decrease in quality service to Medi-Cal patients. The latter being the most crucial as it affects the lives and health of many Californians in ways they don’t deserve. This leaves them with fewer options and higher costs for the same level of health care previously provided. Even in some instances may leave them with nothing.

WHAT YOU CAN DO:

The greatest single action that can be taken is to write to the Centers for Medicare & Medicaid Services (CMS). Let them know that you appose these cuts and the harmful effects that they will cause. The time frame is short as CMS is slated to come to a decision by the end of the month. For all letters sent to CMS if you could also include a copy to us that would be greatly appreciated.

Please send your letters to the following:

Cynthia Mann, Director

Centers for Medicare & Medicaid Services

7500 Security Boulevard

Baltimore, MD 21244

Fax: TTY Toll-Free: 866-226-1819

E-mail: cynthia.mann@cms.hhs.gov

Please send a copy of the letter to the following:

david@publicpolicyinc.com

or fax it to: 888-385-9120

Tell them that you support health care and the access to quality pharmacy care for all Californians. More over make it clear that you appose this 10% cut which is a bad and poorly thought out policy. It will only reduce the care and access that so many Californians need day-in-day-out. Cutting Medi-Cal only hurts the people that rely on it the most and does not in any way fix the budget. As members of the medical and health fields it will come down to you to have the greatest impact in preventing actions such as this happening and setting a precedent for the near future of it being fine to continually cut Medi-Cal funds.

When a severe traumatic brain injury results in a disorder of consciousness, such as a vegetative or minimally conscious state, one question that families and clinicians want to know is—is there brain activity? Brain activity can predict coma outcome, and can be an important tool for rehabilitation planning.

Electroencephalography (EEG) is a widely accepted measure of brain activity. What is more variable is the type of environmental stimulation that can be used to measure EEG activity in coma patients. Robotic gait training is a type of stimulation that requires repetitive exercises. This type of exercise is known to result in brain reorganization, which can produce arousal and brain activity.

A recent study that used EEG to measure brain activity during robotic gait training found that, while healthy patients showed significantly increased activity, coma patients showed no change in activity. The researchers concluded that no increase in brain activity during robotic gait training may indicate a more severe injury and negative outcome.

Lapitskaya N, Nielsen JF, & Fuglsang-Frederiksen A. Robotic gait training in patients with impaired consciousness due to severe traumatic brain injury. Brain Injury. (October 2011)

Executive functioning is a mental skill that requires a higher level of thinking, such as planning and problem solving. Impaired executive functioning is common after a traumatic brain injury because it is associated with the prefrontal cortex, an area of the brain that is highly vulnerable to injury.

When a traumatic brain injury occurs in childhood, impaired executive functioning can be difficult to assess. Children often won’t develop comprehensive executive functioning until they are in high school. Even then, problems can be difficult to assess unless they have some relationship to real-life situations.

The Party Planning Task is an assessment tool for executive functioning. It requires the participant to organize a party while meeting several constraints. The task requires a high level of problem-solving and reasoning. A recent study found that the Party Planning Task accurately assessed impaired executive functioning in two adolescents who sustained a brain injury when they were younger. The Party Planning Task may therefore be a useful tool for clinicians who need an accurate, real-life simulation of executive functioning.

Shanahan L, McAllister L, & Curtin M. The Party Planning Task: A useful tool in the functional assessment of planning skills in adolescents with TBI. Brain Injury. (October 2011).

On Friday September 9, 2011, the House Appropriations Subcommittee on Labor/HHS will consider a draft version of a Fiscal Year 2012 Health and Human Services, Education, and Related Agencies (Labor/HHS) bill. Contained in the bill will be provisions important to people with brain injury including programs authorized through the TBI Act as well as the TBI Model Systems of Care program. Although subcommittee consideration will likely be top line figures only, it is important that Members of Congress remember brain injury as a vital issue requiring broad attention.

It is essential that these underfunded programs gain the resources necessary to improve access to quality care for people with brain injury. Call your Congressmen now!

Take Action!

To contact your Member of Congress to urge them to tell the Subcommittee to support sustained and increased funding for TBI programs, call the Capitol Switchboard at (202) 224-3121 or 800-965-4701 and ask for your Member’s office. If you do not know who your Member of Congress is, visit www.house.gov and insert your zip code in the top right corner of the home page. Feel free to use the following script when speaking with Congressional staff:

Hello, my name is _______________ and I’m calling from ______________, which is in your district. Please register my support for TBI programs contained in the Labor/HHS/Education appropriations bill and urge Representative ____________ to support sustained and increased funding for the TBI Act and TBI Model Systems of Care found in the bill.

Please tell Rep. ____________ to voice his/her support for these programs to the Labor/HHS Appropriations Subcommittee which are vitally beneficial to people with brain injury and their families who reside in your district. It is critical that the Subcommittee consider this important issue while allocating funding during consideration of this legislation on Friday, September 9^th. Thank you for your continued support of people with brain injury.

The outcome after a traumatic brain injury often depends a great deal on the attitude of patients, and how well they can cope. Although past research is mixed about the association with coping styles and brain injury outcome, much of that research used questionnaires rather than observing actual behaviors. More recent research has shown that, based on behavior, certain coping styles can indeed be more detrimental than others to outcome after brain injury.

An avoidant coping style is one in which a person engages in activities that are distracting—such as watching television, texting, eating, drinking, or even just staring into space. Avoidance of an essential task, whether it is specifically for rehabilitation or for everyday life, obviously limits a patient’s recovery. However, most traumatic brain injury patients exhibit avoidant coping styles.

Avoidant coping style can be explained by loss of executive functioning skills, such as memory, attention, decision making, and problem solving. People with a traumatic brain injury often experience a loss of executive functioning skills—either from a direct injury to the frontal lobe (which is related to executive functions), or indirectly from injured connections to the frontal lobe.

But not all people with a traumatic brain injury rely on avoidance to cope; some are capable of planning and executing a task. A recent study that compared avoiders to planners after traumatic brain injury found that planners had better executive functioning, had higher pre-injury IQs, and performed a stressful task better than avoiders.

The patients were also given psychological tests such as depression or anxiety scales, and physiological tests such as heart rate monitoring, in order to assess their reaction to stress. Interestingly, planners also were more psychologically and physiologically reactive to stress than avoiders.

Planners are therefore more able to experience the negative feelings of stress, and can subsequently take an active approach to coping. Planners are also more likely to self-regulate their emotions and impulses because of their increased reactivity. However, because traumatic brain injury patients are more likely to have executive dysfunction and exhibit avoidant coping style, rehabilitation efforts that focus on planning skills may help improve outcome.

Krpan KP, Stuss DT, & Anderson ND. Coping behavior following traumatic brain injury: What makes a planner plan and an avoider avoid? Brain Injury. (September 2011).

Krpan KP, Stuss DT, & Anderson ND. Planful versus avoidant coping: Behavior of individuals with moderate-to-severe traumatic brain injury during a psychosocial stress test. Journal of the International Neuropsychological Society. (March 2011).