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Copyright © 1998 Head Injury Hotline
Rehab Finder
 From The Ashes:
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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.
 
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