How to Be Your Own Brain Injury Case Manager

Michael Paul Mason
How to Be Your Own Brain Injury Case Manager

There is an entire psychology involving the care and rehabilitation of brain injury survivors, but that isn't case management. Case management is the thankless job that gets dropped in your lap the moment the injury occurs. It amounts to hours of phone calls, research, and advocacy. Case managers spend more time on damage control than damage repair, and their role is critical over the lifespan of the survivor. If someone you care for has experienced a brain injury, consider appointing yourself as his or her de facto case manager. Their quality of life hinges on the actions of others, so accept this role wholeheartedly, if you're going to do it. It's the only way.

Whether the brain injury has happened ten minutes ago or ten years ago, the best thing you can do is to arm yourself with as much information and as many facts as possible. Facts and information fuel the changes you want to see happen. Pick up a sturdy spiral notebook, and make this your case management log. Immediately begin a record of every encounter you have with a professional. Write down names, dates, numbers, and a summary of the encounter-including phone calls and emails. Request copies of everything: medical records, lab results, pamphlets, brochures. You'll be shopping for a file cabinet soon enough. Make a special point to write down every incident in which you received a denial of treatment or were flatly ignored. This will be an indispensable resource in the months ahead.

Loneliness is a casualty of your new role; it is also your job to address it. Begin mining your environment for supports. Find a brain injury directory either online or through the Brain Injury Association of America. Determine each and every brain injury-related resource in your state, and make a point to contact every one of them so that you understand exactly what each entity offers. Pay attention to the clinicians you regularly encounter and be on the hunt for an ally. Foster that relationship and draw on their guidance during your more desperate hours. Religiously attend brain injury support groups in person or online, and take notes and advice from others in your community who have forged the road ahead of you. If you're unsure of what a certain resource offers, call them and ask them to send you information. Within a small amount of time, your self-education will put you in a privileged position.

Become an armchair expert on the injury itself, and lean on clinicians and peer-reviewed journals for concrete data. One indispensable clinical resource is a comprehensive neuropsychological evaluation conducted by a licensed neuropsychologist. This evaluation should provide a clear, clinical picture that details all of the survivor's neurological impairments. At the time this test is conducted, request a recommendation for appropriate treatment, and don't pay for it unless you see that recommendation clearly in print and the form is signed. Make copies of this evaluation and store it for safekeeping. Incidentally, if you find the results of the testing discouraging, don't be distraught. Think of the evaluation as a map or progress report, one that should be conducted every year or two following the injury.

You will hit a brick wall, count on it. The wall will be financial, psychological, and political, and it will be instantly deflating. Facilities will tell you that they can't treat your loved one because of funding, acuity, bed availability. State healthcare workers will come at you with disqualifiers and policy stipulations. You will tell yourself to give up and accept the nursing home bed. Brick walls are only brick. Steel yourself and start chipping your way through an appeals process. Tell the insurance company you'd like a designated person to review your requests. Visit your public health department and study its infrastructure the way a general studies a battlefield. Most of the doors that I see open only do so after the third or fourth appeal.

Either the brain injury survivor has no insurance, or the insurance will soon run out or be otherwise rendered useless. Conserve at every opportunity by seeking help from your state. You have two invaluable team members: your state head injury administrator and your office of Protection and Advocacy. You can find out who your state head injury administrator through the National Association of State Head Injury Administrators, and you can find the Protection and Advocacy office in the state listings section of your phonebook. By this point, if you haven't met with a brain injury attorney, it might be a good time to start shopping around for one. Ask your Protection and Advocacy office for referrals, or ask people in your support group about their experiences with attorneys

The state head injury administrator should be able to paint the most accurate picture about what is and isn't available to brain injury survivors in your state. Ask them about whether there are any grants and waivers available, and request the appropriate applications. Ask the head injury administrator if you can join any advisory councils or meetings. Explain that you want to advocate. This will be your door into the state's healthcare system, and you will learn enormous amounts about your state's inner workings. You will also meet those you consider allies and others who pose obstacles. Bring your spiral notebook to all of these meetings, and log summaries of the meetings. With every encounter you have on the state level, make your expectations clear, and ask that some sort of action be taken as a response to your request. When state workers begin to recognize your name and face, you're beginning to make headway.

Here's a small tip about working with your state's Medicaid office: Medicaid exists to provide healthcare services. If it cannot provide help for required health services, then by its own admission, Medicaid must fund appropriate services, even if they exist outside state lines. (Most brain injury rehabs are actually populated by citizens from other states). When your state asks for proof that you were denied treatment in state, you show them your log. When the state asks for evidence that the survivor needs certain services, pull out a copy of your most recent neuropsychological evaluation and point to the treatment recommendation. Through innumerable phone calls, work your way up the Medicaid chain of supervisors and managers, starting with your county office, and request an exception to whatever policy is preventing you from getting help. Give yourself permission to be persistent. Don't be surprised if you end up getting all the way up to the Medicaid Director's office, and don't be distraught if you get turned away. Don't be afraid to appeal.

At this point, you probably have few hairs left to pull. If you continue to meet with denials of service, don't give up. The governor has an office, so write him a letter. Your city has a newspaper, so call and ask a journalist for a few minutes. Explain your story clearly and concisely. You won't need to embellish it or turn it into a melodrama, because you will have a notebook filled with the facts.

If this bit of advice feels like a tremendous burden, and if you feel discouraged, then I think I've done my job. Behind the discouragement, you will find an outrage that is not only permissible, but vital to your humanity. It is the same outrage that has burned in the hearts of saints and peacemakers and civil rights leaders. It is an outrage born of frustration and desperation and a profound sense of injustice. It is an outrage born of love.

Posted on BrainLine August 12, 2008.

Written exclusively for BrainLine by Michael Paul Mason. Adapted from his book Head Cases, published by Farrar, Straus and Giroux, LLC. Copyright © 2008 by Michael Paul Mason. All rights reserved. 

Comments (5)

Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

I have been documenting everything since my husband's accident almost two years ago. So much of what you wrote resonates with me. No wonder I'm tired all the time! It's a lot to do, but definitely what's required to ensure your loved what gets the needed care. Unfortunately, there's a lot of stumbling around in the dark. Thanks so much for sharing this as I often think there must be an easier way and yet I haven't found it. I worry about the survivors that don't have someone able to do this for them. I'm also grateful for the ability to share information, encourage and support one another.

I am the wife of a tbi 5 year plus year survivor, We don't have many/most of these services in Canada that you mentioned. It is left up to family or friends and there is sadly few resources to actually draw on.

I learned very soon after my injury that my former professional skills were now needed for me. I could not remember terminology or details of what I knew but I used my innate skills to find out what was the matter with me, what I needed to know and who I needed to access. It's been quite a ride, my family allowed me the lead, my colleagues helped me gather the info. and I trusted my God and my internal instincts to recover. It has been quite a ride but I am so much better off than many, many others who didn't have the skills themselves or a member of their personal system able to do it for them.

Hiring brain injury case management services can be a big support to those suffering from extreme traumatic conditions. An injured person and his caretakers would otherwise find it hard to get over with the difficult situations on their own.

Excellent advise. I have a 25 yr old daughter with developmental disabilities--- and everything you have says here applies. I tell parents that there is good news and bad news-- you will be your son or daughter's case manager! You will be the one person that carries their history and their story throughout the various agencies and providers. 7 months ago I entered the world of brain injuries with my 22 yr old son. Everything I learned from my daughter's experience has carried over (yes I am case manager for 2 now!) I'd like to say to get to know your state legislators as well--- they can be helpful and great place to advocate.