[Notes: This began as a comment to BooMan’s answer to my question re: Brain Injury as an action item. (I am including my own views that are shared by other brain injury survivors with brief explanantions.) Also, I’m attempting to go straight to the point instead of throwing around the feel-good human service buzzwords that used, but never applied. However, I may use unfamiliar terms (out of habit as I briefly worked in the social service system.) Feel free to ask for any clarification.]
I am not the only traumatic brain injury (tbi) survivor with the following opinion: this “priortizing” the diagnosis and treatment of veterans w/tbi over civilians w/tbi has GOT to stop. Plain and simple, tbi’s do NOT differentiate between veterans and civilians w/respect to rehabilitation. The effects and the necessary treatments are the same. That is why the “Wait till 2008.” mantra is bullshit.
First and most importantly, more funding for research is NOT what is needed, as the research has already been done and is gathering dust.
facts and experiences listed below
FACT ONE: In 1994, I believe it was, I assisted in the writing/development of a case management practice that is just beginning to be used. (Only took a few months to write.) If anyone can explain the logic of a 11-12 year delay, go for it.
FACT TWO: There are a lot supposed “professionals” who don’t know a damn thing about tbi and pass around incorrect info as the gospel truth. I (and other tbi survivors) have run into a few.
FACT THREE: A diary in orange listed some of the mental health symptoms that returning vets are having, and there are many similar symptoms between a mild/moderate tbi and a mental health diagnosis, but the treatment is different. That tells me that it is probable that there is a serious possibility of undiagnosed tbi’s in returning vets. (From what I have heard from other tbi survivors, if a tbi survivor sees a LLP, a misdiagnosis is almost a certainty.)
FACT FOUR: TBI survivors (and others with disabilities) are treated as if they are stupid, and are told what they need, rarely, if ever asked. Example: an employment situation when the subject of reasonable accomodations is discussed (which has happenned to me). It has almost been like I have been set up to fail. Why not ask and take the opinion of a tbi survivor seriously, as opposed to a token gesture?
WHAT IS REALLY NEEDED BUT HAS NO CHANCE IN HELL OF HAPPENNING? An increase in funding for the training of professionals who are knowledgeable about both medical and vocational rehabilitation for tbi survivors. Specifically, more md’s, neuropsychs, occupational, physical therapits, speech and lanugage pathologists, csw’s, lpc’s, etc. that specialize in traumatic brain injury and keep up to date on the newest treatments, and most importantly, diagnosis. But, the time element and funding required for that to actually become a reality are impractical for a tbi survivor, w/o extending the “Wait until 2008.” mantra by a few more years.
WHAT IS NEEDED THAT HAS A SLIM CHANCE OF HAPPENNING? People who know how to do case management, as that is the most overlooked, yet most important part of any social service system, public or private. A semi-competent case manager can understand medical records, the regulations for the agency that he/she works for, and has an idea of the regs for other agencies. A GOOD case manager knows that and about assitive technology, reasonable accomodations, the ADA, IDEA, the Rehab Act, TBI Act, subsequent amendments to all, any state legislation that may apply, tries to be on top of all fed, state, or state fed regs and changes to them. In addition to the above, a VERY GOOD case manager is familiar with funders, pending changes, knows the ways to work around them, and finds out the answer to a question that he/she is asked and doesn’t know. Speaking bureaucratese helps big-time.
Unfortunately, most good (or better) caseworkers/case managers left the agency they were with due to political bullshit, or budget cuts. The majority of those who remain contantly complain about how their caseload is too big, and have absolutely no idea of what their job really is. Is it really necessary to call the Governor’s Office on Constituent Affairs so a worker will actually return a phone call or fill out a form that should have been completed weeks ago?
What’s worse is that the majority of the clients know more about the way things are supposed to be done than the workers. From my experiences (and that of others), most workers are just hanging on long enough to pick up a pension or for the UAW BC/BS that they have. (Your tax dollars at work.)
WHAT WOULD BE A COST-EFFECTIVE SOLUTION? Get rid of all of those just hanging on and hire the clients to take their place. (I am also not the only one who feels that way.) Assuming there are any good ones left, they know who is screwing off and who knows their stuff.
My “mild” tbi happenned in 1991 in a work related accident. (I HATE that word!) I was originally denied treatment/tbi rehabilitation (which I have since found out is the norm). I currently have yet another battle going on with a public vocational rehabilitation agency. I am presently appealing incorrect, bullshit decisions. (This nonsense started in April of last year!) I am not the only tbi survivor who has had battles with agencies. Most give up.
After a year of appeals in this specific instance (there were more in other situations) and having repeatedly heard “I don’t know.”, “That’s not my job.”, or “Call this number/go online.”, I can understand why.
Could I please have an answer explaining the logic of “Wait till 2008.”?
As I said, I will answer any other questions.
Thanks.
The only logic is that there is no logic. I can echo everything that you have said (wearing my hat as one trained in clinical psychology). Much of our training is biological – at least in the better programs, and much of that is devoted to being able to discriminate between TBI and mental difficulties that are not the result of sudden onset of trauma. There is an overlap, e.g. depression is not unusual following some traumatic brain injuries.
But your central point of case management is so important. Almost all areas of health are socialized and organized to divide up human functioning and practical living according to various disciplines. I’ve seen physicians, who could get an insurance company to cut the bullshit quickly, curl up their lip at the prospect of calling – that’s “social work”, I heard one say. Well, so what?
I detest that “team approach”, which often means that individuals are seen as tiny fragments – and no one sees the whole. Without that, the person herself must manage, and in many cases, that simply is asking too much.
YOu can’t generalize from a single case, but it can help to illustrate: one of my favorite students of 15 years ago, was hit by another car while she was driving. Her head slammed into the door, twice. She was ok externally, but her personality is now quite a bit different (she has an identical twin, so the changes are pretty obvious.). She has permanent short term memory problems, that don’t seem that bad unless you know what her memory was like beforehand. She actually got better at reading and responding to emotion expressions, but her vocational choices had to change. Frankly, if she didn’t have her identical twin to bear witness to how she has been significantly impaired by her accident, I dont’ think she would have the assistance she has gotten.
And it is simply beyond belief to see how some places h ave treated her. I’ve been with her when people have started speaking very loud and very slowly to her, as if she were a slightly deaf low functioning person with severe cognitive weaknesses.
And, her twin was a terrific case manager when my student really needed it. She doesn’t need it now, but many would still need help.
This is a serious, unrecognized problem in our country. We do need more physiatrists, more rehab psych, more occupation therapists, more SLP therapists, andmore of so many disciplines who know how to work together and do whatever it takes to really coordinate, not just stay on one’s own little turf.
Turf wars do not advance progress of people with health or mental health difficulties.
This is a serious, unrecognized problem in our country. We do need more physiatrists, more rehab psych, more occupation therapists, more SLP therapists, andmore of so many disciplines who know how to work together and do whatever it takes to really coordinate, not just stay on one’s own little turf.
I’ve done case management and attended grad school after my tbi. Knowing how to read, understand, and apply all of the info that I mentioned (re: a GOOD/VERY GOOD case manager) sounds more difficult than it is. And the case manager is the one who coordinates everything.
Like your student, many survivors are treated like children–I’ve also been there. But, the fact of the matter is that is what is expected, so that is how many act. IIRC, the term is “learned helplessness”.
I was at a survivor’s conference (statewide) last year. Know how many other survivors I met that were amazed that I actually surf the net? There were 2 of about 100, another guy and me, who knew the net. (And I’m mostly self-taught.) Know how many want to do more w/their lives than they are but are told they are incapable of doing so? It’s terrible.
If I can somehow manage to make it to Kensington, believe me, what I tell you will blow you away!
A very dear friend of mine is a cancer survivor. She’s one of those people who developed several health problems after her treatments: depression, severe fatigue, sleep problems. She eventually went on disability after trying to go back to work after her chemo and radiation were completed.
Anyway, watching her struggle w/ doctors, social workers, mental health professionals, hospitals, gov’t agencies, job placement agencies … it’s been so damned infuriating. Even people who WERE “case managers” would only work in certain areas. The turf protecting and petty politics ALWAYS seem to come before finding a wholistic solution to very complicated, very HUMAN problems. It’s all well and good to find the right treatments for problems, but not much good if a person has to miss tons of work to get them. It’s peachy to help someone secure a job, but the impending loss of healthcare and the transition to finding an affordable home make it a win/lose situation. The wrinkles and complications just pile on top of one another, and someone who has health challenges has their damned hands full already just getting through the days.
It’s been eye-opening watching her have to learn to navigate the systems, become her own champion …
We’re a deeply effed-up nation.
The wrinkles and complications just pile on top of one another, and someone who has health challenges has their damned hands full already just getting through the days.
Reagan is directly responsible for that, as his adminstration carried on about how most people who receive anything from social services are cheating the system and all that other crap. That started all of the funding cuts and was the beginning of the splintering of social services. I’ll take that a step further: those who actually bought into that bs also bear responsibility for how effed this country is today.
It’s been eye-opening watching her have to learn to navigate the systems, become her own champion …
I bet that she’d make a hell of a case manager, but would also guess that after having had to put up w/all the bs in the systems herself (and the health problems that you mentioned), she has absolutely no desire to do so.
I’ll share with you both two of the worse epithets I’ve seen thrown at calls for training people to be good case managers:
So, you want to teach people how to earn money as a “rent-a-friend”??
and
All you are is a “professional crutch”!
After hearing a little of those remarks, I wanted to hire a slightly different kind of professional!
So, you want to teach people how to earn money as a “rent-a-friend”??
and
All you are is a “professional crutch”!
Example: A client is has to meet criteria a, b, c, and d, to be eligility for services. A couple of months later, policy changes and now client has to also meet criteria e, f, and g for additional eligibility. The client meets E, borders on F, and as G is written is inelegilbe. In that instance, the majority of case managers today close the case.
re: eligibility In the situation that I described, case managment also involves interpreting F and G in a way to make the client eligible.
Plain and simple case management is a skill that is taken for granted. In that sense, it is similar to secretarial work. (Try an run an office w/no secretaries.)
When I was working, I remember another former case manager saying that case management is an art–you either have the knack for it or you don’t.