Copyright 1999 Federal Document Clearing House, Inc.
Federal Document Clearing House Congressional Testimony
September 16, 1999
SECTION: CAPITOL HILL HEARING TESTIMONY
LENGTH: 4414 words
HEADLINE:
TESTIMONY September 16, 1999 AUGUSTA W CASH COORDINATOR OF HEAD INJURY SERVICES
SENATE HEALTH, EDUCATION, LABOR & PENSIONS CHILDRENS HEALTH
BODY:
TESTIMONY Submitted by AUGUSTA W. CASH
PRESIDENT NATIONAL ASSOCIATION OF STATE HEAD INJURY ADMINISTRATORS ON THE
TRAUMATIC BRAIN INJURY ACT BEFORE THE U.S. SENATE HEALTH, EDUCATION, LABOR AND
PENSIONS SUBCOMMITTEE ON PUBLIC HEALTH A HEARING ON "CHILDREN'S HEALTH:
PROTECTING OUR MOST PRECIOUS RESOURCES" SEPTEMBER 16,1999 INTRODUCTION I
represent the National Association of State Head Injury Administrators (NASHIA),
a not-for-profit organization whose membership includes State
administrators/managers of Traumatic Brain Injury (TBI)Head Injury services.
NASHIA is the only national State Agencies with specific organization whose
membership represents diverse responsibilities in the field of TBI, or provides
specific TBI prevention and surveillance efforts. State services include
case/service coordination, medical care, prevention, emergency medical systems,
trauma systems, surveillance, home and community-based care and services,
employment and other TBI categorical services. STATES' RESPONSE TO DEVELOPMENT
OF TBI SERVICES TBI in children and adults presents a unique challenge to state
agencies and systems. Because of the diversity of ages, range of possible
outcomes, variability of the duration and intensity of services needed, no one
state agency has been able to provide the array of services needed by this
population. In no state is there a free standing comprehensive TBI Agency. TBI
State services cross and involve multiple state agencies. These agencies include
but are not limited to state departments of health, medical services (Medicaid),
Vocational Rehabilitation, education/special education, Mental Health,
Developmental Disabilities, juvenile justice and others. Services are fragmented
among these numerous existing state agencies and systems, resulting in gaps in
services, provision of inappropriate and sometimes excessively costly services.
As states have attempted to develop a system of care and services for people
with TBI they have become increasingly aware of the needs and concurrent issues.
These issues include a continuum of care from injury prevention, hospital based
medical care, medical rehabilitation in a managed care environment, long term
medical and psychological community based rehabilitation, health insurance
coverage, educational entry/reentry, housing, and employment to community
integration. States have struggled in their efforts to develop this continuum of
care; however, results have frequently been a "patchwork" approach to services.
Coordination among state agencies with differing mandates and funding streams
has been difficult. Expertise in the various agencies and systems is not always
available to persons with TBI. States have tried to strengthen some of these
systems through interagency agreements, training, and other activities. Some
states have established trust funds to attempt to fill the service gaps. Various
states have developed responses to specific service needs, such as school
reintegration, Medicaid waivers, pre-vocational services and others, but the
fragmentation of services still exists. The TBI Act of 1996 provided the first
and only federal attempt to specifically help states improve access to health
and other services related to TBI. In FY 1997, the Congress authorized HRSARMCHB
to establish a program of grants to States for the purpose of carrying out
demonstration projects to improve access to health and other services for the
assessment and treatment of traumatic brain injury. The major emphasis for this
pro, gram is on activities which will move states toward statewide systems that
improve and enhance access to comprehensive and coordinated TBI services from
point of injury to long term community supports. It was recognized, however,
that states are in different stages of development with respect to serving
children and adults with TBI. Some states need assistance in establishing a
system infrastructure as a prerequisite to implementation, therefore, Planning
Grants, as well as Implementation Grants, are offered. The Traumatic Brain
Injury Program supports projects which: (1) Assist states in expanding and
improving state and 1ocal capacity which in turn, would enhance access to
comprehensive and coordinated services for individuals with TBI and their
families. (2) Use existing research-based knowledge, state-of-the-art systems
development approaches, and the experience and products of previous TBI grantees
in meeting program goals; and (3) Generate support from local and private
sources for sustainability of funded projects after Federal support terminates,
through state legislative, regulatory, or policy changes, which will promote the
institutionalization of services for individuals with TBI. Since 1997,
thirty-two states (including Washington DC) have received funding. Twenty- three
states have received planning grants, seventeen states received implementation
grants. Eight of the states initially receiving planning grants have
subsequently received implementation grants. Nineteen states have not received
grants. THE ALABAMA GRANT Alabama is the recipient of an implementation grant:
one of three states-(North Carolina and Arizona are the others) to focus on
children and adolescents with TBI. The Alabama grant addresses the critical
health care and rehabilitation needs of children with TBI in an effort to bring
about a focus on this issue. The concern for children with TBI and their
families had not been "at the table" and it was anticipated that this grant
would provide the impetus to begin to determine needed services, implement
service strategies and assure children's needs were met. Given the long-term
costs and recovery periods for children with TBI, this project would assist in
achieving optimal outcomes for children and their families. The goal of the
Alabama grant is to expand Alabama's Interactive Community-Based Model to
develop a statewide service system designed to foster optimal out comes for
children with TBI and their families. The objectives are to: (1)Increase
interagency collaboration and linkages to improve access to comprehensive
individual and family-centered services along the continuum of care. (2)Develop
and implement education and training programs to address various stages of
recovery along the continuum of care (acute care, rehabilitation, education,
vocational, psychosocial, long-term care and community reintegration) for
children, families and/or professionals. (3)) Develop a replicaable,
pre-discharge model to be used in acute care sites in the development of
long-term resource plans for children with TBI. These objectives were selected
based on critical issues identified as impacting the comprehensive continuum of
care for children and adolescents with TBI and their families. These issues are
common among all states. Some states have addressed specific problems and
developed excellent models of intervention, but no state has developed a
seamless system of care for children. This discussion covers some of the most
common challenges to state service delivery systems related to children's needs.
CRITICAL CHILDREN'S ISSUES TBI is the leading cause of death and disability in
children and adolescents in the United States. The most frequent causes of TBI
are related to motor vehicle crashes, falls, sports, and abuse/assault. More
than one million children sustain head injuries annually; approximately 165,000
children require hospitalization. However many children with mild brain injury
may never see a health care professional at the time of the injury. About 62,000
US student athletes suffer mild head injuries annually, according to researchers
in September 1999 issue of the Journal of the American Medical Association. THE
CHILD Children with TBI may experience physical. cognitive, psychosocial,
behavioral, and emotional impairments. The nature of a child's difficulties can
range from mild to severe, and the course of recovery is difficult to predict.
Frequently the medical and health issues related to physical impairments are
more understandable and "easier" to address than the cognitive, behavioral,
psychosocial and emotional consequences that often cause the most devastating
lifelong impairments. Most often children who sustain TBI demonstrate patterns
of positive functional motor recoveries. Because of the child's developing
brain, more serious cognitive and behavioral problems may not be seen until long
after the injury. There are a host of issues- family, school, work, independence
in community, that are affected because of this developmental delay in the
emergence and identification of on- term impairments. THE FAMILY Families are
forced to deal with a sudden traumatic and devastating event that will change
their life and the life of their child forever. Families are the primary care
(rivers and become the child's case manager. Families of children with TBI
typically are unfamiliar with specialized health and educational services that
may provide help and support services for their child. Because of the complex
nature of TBI, it is important that families are assisted with understanding the
characteristics and strategies to help their child be successful at home, in
school, and during play. They need assistance with identifying resources early
in the course of treatment as well as with coping and adjustment over the
child's life span. This planning should begin as early as possible when the
child is in hospital. SCHOOLS The educational system has a significant impact on
a child's future ability to live and function independently in the community.
Schools ultimately become the largest provider of services to children with TBI.
Because of the relative newness of TBI to educators, the appropriateness" of
public education for most children with TBI is currently highly questionable.
Only a relatively few educators have been trained to meet the educational needs
of children with TBI in the classroom. Structures or procedures have not been
developed to meet the challenges of TBI as they have with disability categories
of longer .n standing, e.g. learning and emotional disabilities. Additionally,
TBI is considered to be a I "low incidence " disability in schools while at the
same time the prevalence of TBI in children has been estimated at one million.
Nationally, the number of children with TBI served under the Individuals
with Disabilities Education Act (IDEA) was estimated for 1995-96 at
approximately 9,500 children (US Department of Education 1997, Nineteenth Report
to Congress). This obvious misidentification and/or lack of identification of
children with TBI results in use of inappropriate interventions and strategies
leading to further long term impairments. OTHER SERVICE SYSTEMS Other community
service providers in the health, Mental Health (NIH), Developmental Disability
(DD), substance abuse, juvenile justice and other systems are often unfamiliar
with the characteristics and strategies that will lead to successful
interventions for children with TBI. As currently designed, disabilities systems
and the array of services that the MH/DD system offers do not fully meet needs
of this population. Therefore children with TBI frequently cannot access
services or are inappropriately served. PREVENTION The cost to society over a
life time of childhood TBI is enormous when one considers life-long impairments,
unemployment, prison costs, welfare or disability costs and C educational costs
not to mention lost potential, grief and burden to families. School safety
programs- traffic, playground and sports- family safety programs, use of car
seats and other safety devices can prevent childhood TBI. Child abuse, a leading
cause of TBI in children and domestic violence are significantly linked. This is
a complex issue and requires collaboration among numerous human service agencies
and the courts. STATE SERVICE SYSTEM ISSUES TBI service needs cross many state
agencies and systems. Developing a statewide comprehensive coordinated system of
care for children with TBI require all agencies and system partners work
together. This is not an easy accomplishment, and the process is different in
every state. It requires systems changes that are sometimes difficult
considering factors previously mentioned as well as the political climate,
funding, state government and state agency priorities. The realities of these
factors must be considered in efforts to build a continuum of care for children
with TBI. THE ALABAMA PROJECT: LESSONS LEARNED Much that has been learned in
collaborating with state agencies/systems and service providers has confirmed
the need for more intensive TBI training and education for all involved in the
continuum of care. The need for a hospital pre-discharge model is now well
recognized and the essential components can be identified. The development of
the continuum of care across the lifespan of a child will involve many state
systems at various points in the child's life. System development for children
must not only focus on traditional children's services but must include lifelong
such as vocational outcomes and the ability of the individual to live
independently as an adult. Conclusions from the Alabama project: - The period of
time from hospital discharge to return to community and school is critical. A
hospital pre-discharge model that includes planning for community reentry and
connects the child and family to a community based specialized TBI case manager
trained in children's TBI issues will enhance the coordination of services and
insure that the child and family access available services. - Case
management/care coordination at the local community level provides access to
resources, insures follow up of medical care, assists with transition to school
and provides support and education for the family. - Well trained specialized
TBI case managers function as community liaisons with various existing community
agencies/services and provide educational information and consultation to insure
access to services and that services/interventions are appropriate for the
child. - Schools consider TBI a low incidence disability. Educators/special
educator's knowledge of TBI is lacking. Training may be requested when a child
with a TBI enters/re- enters school, but schools/system wide training in TBI has
not been made a priority. - Some systems are in place to address medical needs
of children e.g. Title V of the Social Security Act, Medicaid, and others.
Cognitive, behavioral and psychosocial issues have not been addressed by
existing system/services. FUTURE DIRECTIONS: WHAT THE TBI ACT CAN DO TO HELP
STATES The positive impact of the TBI State Demonstration Grants on states'
development of a continuum of care for children and adults with TBI cannot be
overstated. They have provided the "seed" money for states to begin the process
of planning for system change or implementing system change/development. Each
state has been permitted to build on its existing infrastructure, using system
components already in place. States have assessed their own unique needs,
identified gaps in their systems and developed plans to respond. Children with
TBI are best served by a state system that provides access to comprehensive and
coordinated TBI services from point of injury to long-term community supports
including transition to services that enable the individual to live
independently as an adult. Systems for children must include attention to
cognitive, behavioral, psychosocial and emotional consequences. States have had
the opportunity to lay the groundwork, expose problems, -et C
partners/collaborators together and lay a foundation on which to build linkages
and change systems. States have begun important work that must be shared with
others to address similar issues. There is still much work to accomplish.
Without continued funding, it will be difficult for these projects to continue.
Nineteen states have not yet been funded. In order to continue this important
work at least $15 million is needed for FY 2000 with room to grow over the next
five years.
LOAD-DATE: September 21, 1999
