 |
Thank those who have helped you, Donate |
|
homes....
nutritional
products for a ventilator dependent patient.... Qualified
legal
counsel.... Support
groups in your community.... Or respite services for harried
caregivers.
Moreover, you're forced to make difficult
decisions concerning matters about which you feel ill-prepared. Where
do you turn? How do you choose? What's best? That's easy,
your solution is Brain Injury Resource Center,
your www guide to head injury facts and expertise. Brain
Injury Resource Center is a non-profit, 501(c)(3), founded and
operated by brain injury activists since 1985.
Over the years we have assembled a considerable
knowledge bank of brain injury resources and experts, which we are in the
process of uploading; so bear with us. If you don't see what
you're looking for; e-mail us or give us a call 206-621-8558.
About:
The goal of this page is to improve access to information and services
for individuals with brain injury, their families, and the professionals
who serve them. This page provides information on and links to resources
and services from the point of initial injury throughout the life span
of the individual. Each section addresses specific issues and is followed
by links to additional information and resources. Our online
Rehab
Finder is designed to equip you to make intelligent decisions about
such services. Questions, comments?
Feedback.
The Premise: According
to a 1998 report issued by the US National Institutes of Health, NIH,
most traumatic brain injury patients are left with substantial functional
impairments. That is, of the 5 million Americans who sustain head
injuries each year, 2 million individuals are left
with brain injuries that cause lifelong, disabling impairments. That
means each year as many as 2 million new brain injuries join the ranks
of the walking wounded.
Therefore,
the goal
of rehabilitation should be to achieve the maximum possible recovery. Unfortunately,
we're talking about a disorder that is shrouded in shame, poorly appreciated
by medicine and consequently, under treated. NIH found that even when insurance
coverage is not a factor, most brain injury patients do not receive referrals
to rehabilitation services. They also found that an alarming number
of such patients spiral down into poverty and despair.
The first step in achieving
maximum recovery involves a 360 degree assessment of your needs, those
of your family unit, and your support network. Once you have
gathered that information your next step involves the identification of
your rehab goals. This step is followed by the careful selection
of rehab services that most closely match your goals, Click
here to go to assessment
tools for this section.
Rehab goals in this instance should address
and embrace goals and needs of both the patient and the family. Frequently,
in the rush to get to the patient the very real needs of the family are
overlooked in rehab planning.
The third,
and
equally vital step in the rehabilitation process involves the active
participation
of the patient and family. Decisions concerning treatment and service
delivery should take into account the needs and desires of the patient
and family. Such decisions should be undertaken in a collaborative environment
that includes the rehab team, the patient and family.
The fourth step
involves, education of the patient and family
concerning the many phases of brain injury recovery. It is a well known
fact that doctors do not educate their patients. Consequently, many
important decisions are based on inadequate information. Such information
could have important implications for quality of life after rehab.
Your visit to this site shows keen insight
and initiative on your part. The educational materials and resources on
this site are designed to empower you to make intelligent decisions concerning
brain injury services. We share our talents, skills, knowledge and
personal qualities to empower you to avoid many of the pitfalls of brain
injury survival.
The final step involves
close monitoring of the actual rehabilitation services. Click here
for assessment form for monitoring rehab service delivery.
Active and ongoing participation of this type will enable you to:
-
make informed decisions
-
receive services specific to the needs of patient and family
-
maximize your recovery
The
Process: This guide provides a structure from which the
user can ask pertinent questions of each facility -- questions that will
help you to choose the rehabilitation services that are best suited to
the needs of the patient and family.
Guiding Principles:This
guide is designed to collect and analyze information on programs and treatments
for brain injury rehabilitation. A high number of "yes" responses in each
section means a higher probability that the program will be of good quality,
provide cost effective services, and meet the needs of the patient and
family. Identify the things that carry great importance for you and work
to have those things included in your rehab plan.
-
Know your needs
and insist that they be fully
represented in your rehab plan.
-
Ask questions, get answers. Learn about the program, its approach to patient
care, its philosophy and methods. If you do not understand something, have
someone explain it to you to your complete satisfaction. Ask to be
given patient education materials based on peer reviewed articles and written
opinion concerning the efficacy and appropriateness of the treatments in
cases like yours.
-
Learn from others. Visit the facility and talk with other individuals
who have participated in each program you are considering. Ideally, they
should include both current and former patients. Join a support group.
Join a support
group, http://www.headinjury.com/linktbisup.htm.
-
Explore your options. There are hundreds of rehabilitation programs
and services to choose from. The closest one, or the one which offers the
most services is not necessarily the one that will best meet your needs.
Choose the program that seems most well suited to your rehab goals.
-
Trust Your Senses. If it doesn't feel right step back and take hard
look, collect additional information. Find a trusted friend or advisor
to help you sort things out. Be wary of anyone who tries to pressure you.
-
Get it in writing. Keep a log of every contact, indicate who you
spoke to, the date, time, and a summary of your conversation. Your
log should include action plans, responsible parties and contact
information.
-
Keep multiple copies of all correspondence in a special file. A complete,
well-organized file is worth its weight in gold.
-
Beyond the glitzy and glitter. The quality of rehabilitation services should
not be judged by a slick facade. Good looks and glossy promotional
materials might hide a shoddy program.
-
Know Your Financial Situation. Talk with the insurance carrier,
managed care organization, or other health care payer to find out how much
it will pay and for what services under what conditions.
-
Ask about deductibles and co-payments. Get a copy of your policy or plan
and reread it. Find out the extent of your financial obligations.
-
Beware of hidden costs find out who pays for what.
-
Ask about the long-term implications of decisions you make today. Get regular
(at least monthly) updates about where you stand financially with the payer
and program. Remember, rehab treatments might span a number of years. Even
then you might find that your recovery is incomplete. It could be
that you might benefit from additional rehab further down the line,
Your long-term plan should cover such contingencies.
-
Investigate public or other private benefits you may be eligible for and
apply promptly as delays might result in loss of certain benefits.
-
Discharge planning. Planning for discharge must begin at admission.
It is imperative to have an understanding of the steps that follow discharge.
It is also essential that you have an understanding of the types of services
that might be needed and their availability. Be clear about your intent
to be involved in discharge decisions. As with other information, it is
important to get discharge plans in writing. It is virtually impossible
for anyone to predict the exact level of recovery that will be achieved.
They can, however, commit to what they will do to achieve maximum recovery.
Important Note concerning
the type of treatment or program. A 1998 Report by the
National Institutes
of Heath found that many brain rehabilitation treatments provided little
appreciable benefit. It also found many brain injury rehab treatments to
be expensive, unproven, and lacking in scientific rigor.
An unproven treatment is often described as any
medical practice or intervention that:
-
Lacks sufficient documentation of its safety and
effectiveness against specific diseases and conditions
-
Is not generally taught in U.S. medical schools
Is not generally reimbursable by health insurance
providers.
Adherence to these principles will enable you to identify programs
and services that will help you to reach your rehabilitation goals.
Choosing the wrong program or services will only make you worse off
financially, physically, or both?
For
Specific Questions go to our: Rehab
Finder Checklist
This check
list designed to collect and analyze information on programs and treatments
for brain injury rehabilitation. A high number of "yes" responses in each
section means a higher probability that the program will be of good quality,
provide cost effective services, and meet the needs of the patient and
family.
|