TBI Press Conference Call Transcript

Welcome, my name is Geoffrey Lauer. I’m with the Brain Injury Association of America and I’m going to serve as today’s moderator. I’d like to welcome everybody to the teleconference.

Today you’ll be hearing from advocates about the IOM – the Institute of Medicine’s – report on the Health Resources and Services Administration’s traumatic brain injury program.

At the end of our conference, our experts will take questions from you. And also, after the teleconference, you will receive an e-mail with a link to a press release and related materials, including a fact sheet on traumatic brain injury prepared by the Centers for Disease Control and Prevention.

I’m going to go ahead and briefly review some of the basic facts about brain injury, and then we’ll turn this over to our additional experts.

A traumatic brain injury (TBI) is caused by a sudden jolt, blow or penetrating trauma to the head that disrupts brain function.

Each year in the United States there are 1.4 million Americans who sustain a traumatic brain injury; 475,000 of those injuries are to children.

People of every age, gender, race, religion and socioeconomic status experience brain injuries, with toddlers, teenagers, and seniors at the highest risk for a brain injury.

Traumatic brain injuries – also referred to as TBIs – are caused by falls, motor vehicle crashes, assaults, sports-related injuries, and other means.

According to the Centers for Disease Control, there are at least 5.3 million Americans who have a long-term disability as a result of TBI – which is about 2 percent of the US population.

The cost to society in 2001 – which was the latest year for which figures are available – was over $60 Billion in both direct and indirect costs.

The Traumatic Brain Injury Act – the TBI Act – of 1996 directs the Health Resources and Services Administration – also known as HRSA – to make grants to state government agencies and also protection and advocacy organizations to improve access to health and other services for individuals with brain injury and their families.

It is this program, funded through HRSA, that the Institute of Medicine – the IOM – was asked to review. This recent study focused on whether the TBI Program has led to an expansion in state system infrastructure as a precondition for better serving persons with traumatic brain injury and also their family.

Our first speaker is Susan Connors. Susan serves as the president and chief executive officer of the Brain Injury Association of America.

The Brain Injury Association of America was founded 25 years ago this year to create a better future through brain injury prevention, research, education, and advocacy. The Association includes a nationwide network of state affiliates, their chapters and support groups.

SUSAN CONNORS: Thank you Geoff. I want to begin with some more facts, if I can.

Every 23 seconds, someone in the United States sustains a traumatic brain injury. It can happen to anyone at any time.

And because of improvised explosive devices (IEDs), mortars, bombs and grenades, and the like, traumatic brain injuries are being sustained in record numbers in Iraq and Afghanistan.

Of the soldiers who have been wounded, we know that there are more than 1700 are known to have brain injuries.

An unreported number of non-combat TBIs are being sustained, though we know of at least two—Mr. Woodruff and Mr. Vogt, the ABC reporters.

An unknown – so that’s an unreported number of non-combat-related TBIs and an unknown number – of concussions, so-called “mild brain traumatic injuries” that often have severe consequences and are also occurring in this conflict.

Simply put, traumatic brain injury is a misidentified, misunderstood, under-funded public health problem.

There is no way to adequately describe the life-altering, often devastating, impact of TBI. Most people have never heard of brain injury. In fact, it’s the last thing on your mind until it’s the only thing. There is no way to adequately describe the life altering often devastating consequences of traumatic brain injury.

As shown in Table 2.3 of the IOM report, TBI causes physical, cognitive, and behavioral impairments that can last a lifetime. The injury can undermine performance at school and at work and interfere with interpersonal relationships, leaving individuals and families feeling isolated, ostracized and left to deal with the aftermath of the injury on their own.

People who have been injured often need a range of services of that vary in scope, duration and intensity.

Although no two injuries are alike, Table 3.1 of the report lists typical service needs. These needs will change over time.

As the report states on page 11 of the executive summary, “Finding needed services is typically a logistical, financial, and psychological challenge for family members and other caregivers.”

As individuals and families exhaust their financial resources, not to mention their personal emotional reserves, they turn to the public sector for help. The brain injury association of America advocated for the traumatic brain injury act and the grants HRSA is authorized to make to state government agencies and to protection and advocacy organizations in order to improve access to and coordination of existing public services, such as health, special education, vocational rehabilitation, individual and family support, and long-term care services. Because of the HRSA TBI program, some states have established or improved service delivery for individuals with brain injury, but nationwide funding for TBI is still scarce. As the cost of health care rises, individuals with brain injury are being discharged from acute hospitals sicker and quicker. They’re sent to nursing homes, where rehabilitation is not offered, so the chance of returning to their homes and communities is slim.

The Brain Injury Association of America was very disappointed when President Bush eliminated HRSA’s TBI funding in his 2007 budget proposal. This is the second time our President has tried to zero out this critical program. Yet, as IOM has accurately characterized it, the federal government’s investment in the HRSA TBI program is “modest.” It’s about $9 million per year. Further, IOM accurately assessed the HRSA TBI program as “a small federal program that has huge implications for individuals with their traumatic brain injury and their family.” The Brain Injury Association of America is calling on Congress to again restore the funding, and this year to increase support for the HRSA TBI Program. We believe that our returning veterans, the 475,000 children who sustain brain injuries each year, and the one million adults whose lives are forever changed because of TBI deserve no less.

GEOFFREY LAUER: Thank you Susan.

Now, I would like to introduce Kenneth Currier. Ken is the executive director for the National Association of State Head Injury Administrators, which assists state government in promoting partnerships and in building systems to meet the needs of individuals with brain injury and their families; and Ken will discuss the state programs within the TBI program.

KEN CURRIER: I want to start off with a little background on the TBI program. The TBI Federal Program was authorized by the TBI Act of 1996, as amended in 2000, to “make grants to States for the purpose of carrying out projects to improve access to health and other services regarding traumatic brain injury.” The Program initiates the creation of sustainable infrastructure and increased capacity in the States.

Since implementation in 1997, HRSA has awarded time-limited grants to States in the form of planning, implementation and post-demonstrations grants for purposes of changing and improving access to services, education, training, data collection, and capacity building. The 2000 Amendments also provided authority for funding for Protection and Advocacy services, which has been expanded to every P&A agency across the country.

TBI is a complex disability that challenges States’ ability to respond to the needs of persons with TBI and their families. The report describes how individuals need services that cross multiple programs including Medicaid, vocational rehabilitation, employment, education, home health care, mental health, substance abuse, and long-term care programs. Without coordinated systems of care, individuals are often placed inappropriately into nursing homes or left to the families to care for without much support or assistance. When families are no longer able to care for these individuals, the families turn to the State, which is generally the only resource for these crisis situations.

Until the TBI Act of 1996, there was no national policy or Federal funding to assist States to develop the unique array of services needed by individuals with traumatic brain injury and their families. While some States had begun providing services through State General Revenue, Medicaid or Trust Fund/Dedicated Revenue sources prior to enactment of the law, the majority of States had not undertaken the task of addressing these issues.

In less than nine years, the HRSA federal TBI program has been available to bring States on board and to assist other States in developing and expanding service delivery in their States –statewide, to all ages, all levels of severity, and all areas of need, ranging from information & referral services to rehabilitation to home and community support services, including residential, vocational, personal care, and long-term care. Appendix C of the IOM report describes in detail the numerous and varied accomplishments of the States.

Recognizing that the States are at various stages of developing service delivery systems, the HRSA federal TBI Program allowed States to use Federal funding specific to their own needs. The report endorses this flexibility as critical in allowing systems to evolve, but points out the difficulty in evaluating outcomes of the overall Federal program in impacting the lives of individuals with traumatic brain injury and their families.

As funds are not used for direct services, it further makes it difficult for the Federal program to evaluate the direct impact of the program, or to be able to report the number of individuals served under the program or how they were served and the outcomes of the services.

As States need any available State resource for direct services and supports, there is generally very little State funding available to help improve service delivery systems so as to be more readily accessible, coordinated, and cost-effective. The Federal TBI Program provides opportunity for States to evaluate systems, focus on system improvements to avoid any potential duplication, and to improve care provided through professional development, education, and training. The report points out that this has lead to changes in systems delivery.

While the program recognizes the importance of using existing disability and rehabilitation systems to serve individuals with traumatic brain injury as needed and appropriate, the program awarded funding that was limited to one to three years to do so. It takes considerable time to change or augment or enhance these systems to serve individuals with traumatic brain injury. A one to three year grant is often not sufficient to completely open up existing systems, for example policy/legislative changes with regard to eligibility and service packages, staff training, assessment and screening tools, etc. The report applauds the program for creating three year grants to meet the States where they are in systems development.

The 2000 Amendments provided funding for the first time to Protection and Advocacy Systems, and in only the last three years has that money been available to every State. It is the only funding tied to TBI issues, and the P&As have provided individual advocacy and assistance in accessing services, while also being key players in many States to create systems change.

In today’s economic environment, States do not have the capacity to absorb cuts in any Federal funding, much less generate new funding to support the development of infrastructure and policies necessary for coordinating the delivery of services that are seamless, timely, and cost effective. Thirty-one states reported budget shortfalls in fiscal year 2005, with a deficit of about $37 billion, and 26 states project a combined budget gap of almost $25 billion in fiscal year 2006.

Since 2000, States have faced less tax revenues; increasing numbers of poor people who depend on public programs for health care and basic needs; and all funding streams that provide disability services—in particular, State mental health agencies, Medicaid and State Children’s Health Insurance Program (SCHIP) programs—have sustained budget cuts.

However, despite these issues, s ince 1997, 48 States, two Territories and the District of Columbia have received time-limited grants on a competitive basis. States have created advisory councils, designated lead agencies, conducted needs assessments, and developed State plans that provide strategies for improved services across multiple systems.

Through these efforts, States have identified and implemented projects to fill in the service gaps, including services to children, victims of domestic violence, individuals who are homeless, individuals with co-occurring conditions and other underserved and unserved populations, and they’ve leveraged other funding sources to help pay for the services including Medicaid waivers, trust funds, and other Federal grants.

As you can see, and as the study points out, the federal TBI program has produced demonstrable, beneficial change in organizational infrastructure and increased visibility of TBI – necessary to improve systems – all with very modest resources. The report finds considerable value in providing small scale federal funding to catalyze state action. The next stage is critical – states need continued federal support to build an effective, durable service system for meeting the needs of individuals with TBI.

The IOM study says the program should be a priority for HRSA, but that means it must be a priority to Congress and must receive increased funding to continue to be successful in carrying out its ambitious goals.

GEOFFREY LAUER: Thank you Ken.

We’ll now be able to hear from Curt Decker; Curt serves as the executive director of the National Disability Rights Network, the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems that administer the Protection and Advocacy for Individuals with Traumatic Brain Injury program.

Curt will discuss the role of the Protection and Advocacy Systems in meeting the needs of individuals with traumatic brain injury.

Curt DECKER: Thank you Geoff.

As Susan and Ken have already said, NDRN also believes that the IOM report correctly assesses the federal TBI program as an ambitious program that has been able to accomplish a great deal in its short existence and with limited funds. We also agree that there is much more to be done, which requires increased support on behalf of Congress and the Administration, not elimination of this program.

Protection and Advocacy services have been available since the late 70s in all states and territories. These systems have not only helped individuals with traumatic brain injury but other people with disabilities in accessing a range of services – from assistance with guardianship issues, to transitioning out of nursing homes, and to helping individuals receive appropriate education according to their individual needs and also helping them receive adequate employemtn esrvices. We’ve also, along with our individual cases, been a catalyst for systemic change.

While the new funds allowed P&As to focus on TBI for the first time, we have been serving individuals with TBI for decades. While the contributors to the IOM report felt they had insufficient data on the P&A section of the TBI program, the data that we have from our states show that individuals with TBI are an ever-increasing number of those served by our state agencies throughout the country. For example, in 2003, individuals with traumatic brain injury made up about 2 percent of our overall caseload, but that number rose to 3 percent in 2004. and with our current data from fiscal year 2005, we are beginning to see an almost 33 percent increase in the cases that have come into our agency.

One of the problems the report identifies is the difficulty individuals with traumatic brain injury often face navigating various service systems, but that is precisely the unique role of the P&A. We are able to play a major part in providing information and referral, training, and – when necessary – advocacy and actual litigation. Given the P&A System’s established history in every state and territory, our agencies are in a position to help individuals with TBI navigate these systems but, as both the previous speakers have said, our ability to do so requires that we have the necessary funding to provide this representation.

In asserting that “guidance of persons with TBI and their families through multiple potential sources of care through public and private agencies, and system coordination is a prima facie essential condition for adequate service,” the IOM study does allude to the multifaceted services available through the Protection and Advocacy agencies for meeting the whole range of needs of individuals with traumatic brain injury. For example, another one of our programs which provides assistance with assistive technology, which is often an essential support role for people with traumatic brain injury, has also been slated for elimination by the President’s budget.

One of the essential points that too often gets missed from the disability world is that programs such as this are for everyone. Unlike other protected classes, disability is one that anyone could find themselves a part of at any given time. A traumatic brain injury – perhaps more than any other acquired disability – is one that tends to hit individuals not only seemingly healthy, but in peak shape, such as athletes and soldiers. These are individuals who likely never thought about the disability support system before their injury, and as a result of traumatic brain injury find it particularly hard to navigate the necessary systems to receive the supports to which they are entitled in order to continue to lead a productive life in the mainstream of the community. It’s important that we look at these programs not as ones that serve a small percentage of the population, but as a safety net available to any one of us that might need them tomorrow. And as Susan so eloquently said, and I think it bears repeating, “traumatic brain injury is the last thing on your mind until it’s the only thing on your mind.”

For these reasons, I join my colleagues in calling on Congress to not only reestablish this program but to increase its funding so these programs can continue to do the magnificent job they are doing.

Geoffrey LAUER: Thank you Curt, and also thank you Ken and Susan. We’d now like to open up the call to questions from the media…

That will conclude today’s teleconference. Thanks to everyone who was able to participate.

For those in the media who wish to follow up with anyone on today’s call or to receive their bios, please contact Kaaryn Sanon at 202-408-9514 or e-mail at press@ndrn.org.

And one more thing I’d like to mention is that the Congressional Brain Injury Task Force is having a Brain Injury Awareness Month Fair and press briefing tomorrow at the Rayburn building in Washington, DC, and Kaaryn can also provide you more information about that if you are interested.

Again, thank you for participating in today’s call. That concludes today’s call on traumatic brain injury and the Institute of Medicine’s report.

March 7, 2006