Hello:
My name is Dr. Julien Arbor and I have an Acquired Brain Injury that was the result of such over-the-top medical malpractice and human rights violations that it is inconceivable to me that such a thing would occur in the United States!
A bit about my background:
I am a Licensed Clinical Psychologist specializing in Health Psychology, experience in evaluating and working with patients with TBI, a Wellness Counselor, a Natural Healing Consultant, a Researcher, an Author, and a 7 year Volunteer Health Educator & Moderator for one of the largest natural health websites on the internet.
I wrote that statement a few months ago prior to a number of further developments which have prevented me from moving forward with my own healing as well as my research and also suffering significant setbacks to my condition as a result of the ongoing violations of human rights and abuse of the medical system. The following is a link to my blog and includes a video that was shot in July 2009...
http://oihoipolloi.wordpress.com/2009/09/09/torture-in-america/
Since that time, I have also had my home help and nursing assistance services that were ordered by my private physician reduced from the 7 days a week down to 4 days a week... and at no time have I received these services on a consistent and reliable basis. I have even paid out of my own pocket to supply gas money for my assistants to provide transportation for me since I was unable to make use of the paratransit services that I obtained since I am in a non-adapted house with stairs and the drivers are not allowed to come to the door and get my wheel chair. Additionally, I was informed that there was a cap placed on the money that was to be spent on my services that were not even close to the services that are indicated on the state of Illinois website for an individual with a TBI Waiver. See the following link...
http://www.hfs.illinois.gov/hcbswaivers/bi.html
I have also just learned that it was the agency that was assigned to my TBI Waiver that set this cap on the money that was available for my services. This agency does not provide most of the services that are to be made available for someone with a TBI Waiver. Although I had been informed that I would receive neuropsychological testing, supportive counseling to deal with my newly acquired disabilities, and rehabilitation services... none of these have been made available to me. The only services that I have received on a consistent basis is the weekly delivery of meals. At no time have I received consistent and reliable home help and nursing assistance, and in fact, every time that someone has been assigned to me who provided me with valuable information regarding what services are truly available including in-home rehabilitation, housing vouchers, live-in assistance, and up to $27,000 as a crime victim who has sustained catastrophic losses... those assistants were then pulled off of my case and I was re-assigned to someone else.
I have made it known to every physician, hospital and agency that has been involved in my case since May of 2008 that I am in need of safe housing as I have been living with a roommate who is neither trained nor prepared to deal with someone with an Acquired Brain Injury and whom has been both abusive and neglectful of me, including blocking my assistants from coming into the house and preventing me from receiving services on a few occasions. Shelters are not equipped to take someone in my condition, and since I am not eligible for nor in need of nursing home placement and have to pay out-of-pocket for the only descent health care that I have received other than what I can provide for myself, a supportive living facility is also not an option as I would then be left with a monthly income of $90. Additionally... I was led to believe that these agencies were working on obtaining housing for me and had spoken at length with them regarding my need to have the financial resources for my health care... most of which I would supply for myself at a considerably reduced rate as a health care provider myself... and also assistance with moving expenses so that I don't loose any more of my personal belongings than I already have. Not only was I informed that they were assisting me in obtaining appropriate living arrangements, but one of the assistants requested that I print out two blank rental agreements and sign them as a means of assisting with this process. This assistant very abruptly stopped providing care for me and yet another assistant was assigned in her place who provided virtually no care. I was then switched to another agency, which has largely been a repeat of the first. Every single time that I have made any significant headway with obtaining assistance, establishing a list of priorities regarding the many things that I need to address, and on the verge of carrying them out... whomever has been assisting me has been pulled from my case with several days of no one helping me... resulting in a set back of my condition as I am then having to exert myself beyond what I should which further taxes my adrenal glands and increases my seizure activity. Given that seizures result in brain damage in and of themselves, the actions on the part of these agencies has contributed my inability to regain my health!
The events that occurred which lead to a chain reaction of traumas and ultimately the development of my having Adrenal Insufficiency, an Acquired Brain Injury and seizures that should warrant an additional diagnosis of Epilepsy included an involuntary and unjustifiable psychiatric hospitalization that was initiated by the woman who raised me whom I now have reason to believe may not be my mother. Prior to her taking this action, I had informed her that I was planning to relocate to Mexico and also working on a book that addresses the transgenerational effects of abuse. I had also informed her that my father had given me some information prior to his death, although I did not tell her what he had shared with me. I had experienced considerable abuse and neglect by her beginning at the time that I was a baby, had spent many years dealing with this with various therapists, and believed that I had addressed all the issues of my past. I had even moved in with her in 2004, in part to assist with her care as she was at risk of nursing home placement and because I had previously worked in long-term care facilities, and did not want that for her if it could be avoided. I also erroneously believed that with her advanced age and weakened condition that she would not be able to harm me as she had in the past. Unfortunately, as a result of my living with her, her health and strength improved considerably while mine began to decline... largely as a result of the stress that I was under. Consequently, I had made the decision to move to Mexico where I could live more inexpensively and have a simpler life, and had begun making preparations for establishing an online counseling service, become certified to teach English as a Second Language in a corporate environment, and was also working on a couple of books, including the one I've mentioned. I now believe that she may have thought that I knew then what I have only come to know and suspect recently... and that her motivation for having me involuntarily and unjustifiably hospitalized in a psychiatric facility was retaliatory in nature and also designed to prevent me from uncovering and exposing a number of secrets within my family... particularly involving her.
She had contacted the local police department in an attempt to have me thrown out of my home, and was told by them that she would need to initiate a formal eviction procedure as I had established residence there. Instead of doing this, she lied to the local authorities, filed a petition for commitment, and in the process of carrying this out, a number of my Constitutional rights were violated. Additionally... because I refused to sign voluntary admission papers given that I never should have been admitted in the first place and was not going to allow the hospital to stick me with the bill, I had to remain at this facility during which time additional rights were violated and until my commitment hearing at which time I was immediately discharged. This resulted in my losing my home and most of my possessions, and then later nearly freezing to death while sleeping in my car after having an altercation with my roommate where he became physically abusive. I should not have been hospitalized and he should not have been put in the position of taking in a roommate who had just been traumatized!
Because of the magnitude of these events and because my friends were reluctant to get involved and erroneously assumed that I could get assistance through various state agencies in Illinois, I was left to deal with this largely by myself. One of the nights that I slept in my car occurred when I attempted to obtain a restraining order to prevent her from doing any further harm to me and to stop her from disposing of the remainder of my belongings as she had been doing so for some time prior to these events. I was informed by the District Attorney's office that I would need to either hire a private attorney or represent myself and that no restraining order would be granted. As a result of this, I did indeed loose most of my remaining possessions. In spite of her opening my mail, an indication that she had falsely represented herself as me to at least one company and closed one of my accounts, which she admitted to doing in front of two police officers and two other witnesses, I was not allowed to file charges against her. Instead I was told to contact the post office and she was told not to worry because they wouldn't do anything about it anyway.
Since these events left my life in an utter shambles, no longer had access to much of my business affairs, had very little money as a result on a tremendous amount of student loan debt, and then had my car break down... I became dependent on my roommate for both money and transportation, during which time I also began experiencing a growing decline in my health. Prior to this I had been in outstandingly good health, on no medications, and was looking forward to beginning a new and less stressful life. Because of the nature of what I had just been through, I was not prepared to begin working with clients and assisting them in dealing with their own life challenges as I was needing to address my own. I spent the first few months attempting to locate legal representation and had been unsuccessful... largely from the stigma of having been in a psychiatric facility in spite of not belonging there, and also at times sensing that people were not believing my story. It is generally assumed that a mother would not bring about such harm to their own child.
As my health continued to rapidly and dramatically decline, I began having increased inability to perform activities of daily living... lacking the stamina to stand long enough to cook a meal... and having greater difficulty concentrating, walking, and reading and writing. I also began noticing some trouble with my short-term memory and had also lost a considerable amount of weight in spite of having a voracious appetite. Unfortunately, I did not have health insurance, but was admitted to the hospital and a psychiatrist was called in for a consultation. I was misdiagnosed with PTSD as well as Deconditioning and a Gait Disturbance, and it was suggested that these too were the result of yet another psychiatric diagnosis known as Conversion Disorder. Shortly before I was about to be discharged, a nurse was taking my vital signs and abruptly left the room. Upon her return I inquired about what the problem was and she informed me that my blood pressure was dropping dangerously low and she had gone to contact my doctor. As soon as she mentioned low blood pressure, a light bulb went off for me and I got out my laptop. As I then suspected... my symptoms were consistent with Adrenal Insufficiency. I informed the doctor of this and an initial test was run that indeed suggested that there was a problem. However, they did not follow this up with the appropriate tests that determine the various causes of Adrenal Insufficiency and I was quickly discharged without proper treatment and given prescriptions for pain medication, physical and occupational therapy that I could not use due to lack of insurance, and a referral for home help that took over a month to obtain an evaluation appointment for. I was also given the name of a disability attorney to assist me in filing as the doctors were unwilling to complete the paperwork.
I immediately filed for disability, but had considerable difficulty filling out the forms.. in part because I no longer had access to the information and in part because of the effect that the brain damage was having on my writing. Although I explained this to the person who entered the report and indicated that I needed additional help, she entered the information as it was written on the forms and I knew immediately that they would most likely reject my application. I then contacted the disability attorney again and later received a call from yet another disability attorney who met me in person along with a social worker. At this point there was no doubt in my mind that I was dealing with brain damage as my symptoms had continued to progress, including severe Ataxia. Although they assisted me with obtaining disability, the social worker was once again trying to force me back into the "mental health" system by linking me with Thresholds, which is a psychiatric rehabilitation organization. I knew that I was not dealing with a psychiatric condition as realized that I did not meet the diagnostic criteria for PTSD.
In the meantime... my condition continued to decline with a major change in my status that resulted in my going to the Emergency Room with both symptoms of a Brain Injury as well as those indicative of seizure activity. In spite of my telling them what the problem was, what tests they needed to do to confirm the problem, and what treatments I needed to stop the progression of the damage to my brain... they instead again suggested that I had a Conversion Disorder, performed tests that I told them would not reveal the problem, knew that I was in an abusive situation where I was living for which a social worker evaluated me and offered no alternative placement given that shelters are not equipped to deal with patients with a brain injury, and placed me in a cab at 4am with referrals for rehab and a clinic general practitioner.
I was eventually able to see my own private physician was able to obtain the proper adrenal stress testing that revealed the very problem that I had indicated that I had. He confirmed this diagnosis, and prescribed rehab and natural treatments... the first of which was very beneficial although not covered even by private insurance. Knowing that I was also having seizures and also experiencing increased muscle contractions... I began conducting research while lying in bed in order to figure out what was causing this as I was unable to locate a neurologist who would take Medicaid once I received it. Along with the test results that I had already received, I was able to determine what was causing the damage to my brain and halt it's further progression except for any additional damage that was being caused by seizures. I then requested a medication that is used for anxiety which a nurse practitioner gladly prescribed, although I also knew it to be an anti-convulsant. During this time I had also contacted approximately a dozen different government, educational and private research facilities in an attempt to get someone to study me and the only one that expressed an interest was not affiliated with a facility that could also provide me with any rehab or treatment.
The disability attorney and social worker had also failed to inform me that I could have immediately applied for Public Aide in order to obtain some income as well as Medicaid and it was my assumption that as soon as my SSDI was approved, that I would automatically have Medicaid as well. Upon learning of the approval of my Medicaid, my roommate immediately took me to another hospital ER as I was having difficulty sitting or standing up straight and my gait disturbance had dramatically changed from severe Ataxia to a slow, shuffling gait similar to Parkinson's Disease. I was also in considerable pain with ongoing symptoms consistent with seizures. I informed them of the research that I had done, and while they acknowledged that I needed to be seen by a neurologist, they did not allow a neurologist to see me as I did not have Medicaid, but only SSDI. Additionally... the social worker had submitted an application for me to receive housing assistance, but had filled out the forms herself before presenting them to me. I informed her that she needed to make some changes as she had indicated that I had previously been evicted, when in fact the petition to have me committed was a means of bypassing a legal eviction. She also indicated that I was in denial about my condition when I had been having internet communications with a psychiatrist in Switzerland and also looking for someone locally who specifically dealt with trauma that was the result of psychiatric abuse and had been unable to locate anyone. She stated that she would make the necessary corrections, however, upon receiving a copy of the forms that she submitted... no corrections had been made and I was not approved for alternative housing.
Following the posting of the above video, I went through yet another incident of blatant violation of my human rights within the last few weeks. I was forced to go to yet another hospital due to slightly elevated blood pressure after I had stated that I did not wish to have further medical treatment at any hospital given that it has been hospitals that have traumatized me. Upon arriving at the hospital I was seen by a physician and a nurse, and then the nurse presented with a pan full of empty blood vials to conduct additional tests. I informed her that she did not have my permission to conduct any further tests on me, she left the room, and approximately 6 security entered my cubicle, placed me in 4-point velcro restraints, injected me with what they identified as Haldol AFTER they had me in restraints, forced me to take an Ativan, attempted to conduct an EEG (although that technician honored my request to forgo any additional tests), and then I was transferred to yet another hospital and admitted to a Behavioral Health Unit. The dates on my hospital bracelets are off by a month, the psychiatrist who saw me does not appear to be affiliated with that hospital, the social worker does not come up in the database as being licensed in the state of Illinois, I was threatened with nursing home placement or further psychiatric hospitalization, and once again their were multiple rights and ethical violations... including unauthorized communications with my roommate and giving a bogus diagnosis to the paratransit driver who took me back to my residence. This was clearly medical experimentation that was done with no regard for my health and wellbeing! After arriving back at my residence I also discovered that my checkbook, cell phone charger and two necklaces were missing. The necklaces were later discovered in the coin compartment of my wallet, however, the checkbook and phone charger have never been found... nor will the hospital administrator return my phone calls.
There are now 9 Chicago area hospitals that have been involved in my case and so many doctors that I've lost track, as well as the Illinois Department of Human Services, the agency that has been handling my TBI Waiver, and the two agencies that have supplied home help and nursing assistance for me! I have had to provide most of my own casework, been deprived of numerous services that I should be receiving with a TBI Waiver, and have been deprived of the financial assistance to crime victims that would enable me to get back on my feet and pay for my own treatments. Additionally... I should have been properly advised regarding a housing voucher over a year and a half ago, and have since learned that there are numerous people who have obtained such vouchers who are also able-bodied and working, living in luxury apartments, town homes and houses, driving new cars, and paying only $200. a month rent! Some of these individuals are friends and family of people who work for these agencies and who are familiar with the system, but do not share this information with the clients that they are being paid to provide services for. The agency that was assigned to me as a result of having a TBI Waiver has failed miserably to provide consistent and reliable services as well as many that I should be receiving with a TBI Waiver and that were ordered by my own physician, but have not been granted to me. I was informed that a cap had been placed upon how much money was available for my services, although the agency would not tell me who set this cap. I have just learned that the cap was established by the agency themselves, which comes as no surprise given that they do not offer many of the services that are supposed to be provided to those with a TBI Waiver. I have also learned that it is possible to have live-in assistance that would enable me to live independently, as I currently need the help... but anticipate that once I am getting the proper treatment and rehabilitation... I will be able to regain most if not all of my functioning, get back on my feet, complete my research and get back to work! I have never wanted to be dependent on the government for taking care of me and have been fighting for over a year and a half so that I could restore my health and get the proper physical and cognitive rehabilitation... most of which I can provide for myself provided that I have a safe living environment, consistent and reliable assistance, financial means that are far below what the state would be required to pay if I were to go into an in-patient rehabilitation facility, and transportation that will enable me to get the care I need!
In spite of being disabled and largely bedridden for the past year and a half, I have been working non-stop in order to advance the understanding of this condition so that not only could I help myself, but also so that others would benefit. People are suffering needlessly and also dealing with the growing side-effects of psychotropic medications that are not only ineffective, but in many cases cause additional damage because they are not addressing the underlying cause of the problem and also adding to it. While some people may obtain a degree of symptom relief with either these medications or with psychotherapy, until there is an integrative mind-body approach to treating what psychiatry has been diagnosing as PTSD, the person remains at risk for later developing any number of highly correlated medical conditions.
I am extremely alarmed that instead of receiving the optimal care and services so that I've needed so that I could complete my research and make this information available to people, I have instead been deprived of even the most minimal services... while knowing full-well that it is indeed possible to have safe, effective, primarily natural and affordable health care... but I have been unable to prove this or make this information available in an appropriate format due to the manner in which I have been handled by the "health care" and the "social services" systems! Rather than supporting me in my efforts to make a positive contribution that would assist a very large number of people, I have instead been retaliated against and had my rights repeatedly violated!
Additionally... I am not alone in this respect and have learned of several other cases where medical conditions that had been misdiagnosed as psychiatric conditions were being dealt with through the "mental health care" system with equally or greater catastrophic results to my own. The "mental health care" system and psychiatry in particular is being used as a means of retaliation and intimidation and has gotten entirely out of control! For any person with an HMO or Medicare or Medicaid, it is required that they have prior approval for any form of medical procedure with the exception of emergency care and for psychiatry! The "mental health care" system is also being used as a means of bypassing the legal system, and psychology has entered into both the military and law enforcement... resulting in the overuse and abuse of these services as well as the utilization of psychiatric facilities beyond their intended purpose!
As the laws currently stand... it is far too easy for an ex-husband, a jilted girlfriend, a burnt out family member, a hostile boss, an angry physician or even a "mother" who has secrets to hide to obtain a petition and have a person committed to a psychiatric facility... and in some cases... be forced to take medication or undergo treatments such as ECT! Some of these medications and treatments result in horrendous side-effects and permanent brain damage... and these people, along with the disabled, become some of the most vulnerable people in society because of the stigmatization and the lack of people who are willing to advocate on their behalf. In the cases of involuntary admission or treatment, it is necessary for the psychiatrist to make a diagnosis in order for them to get paid and therefore that diagnosis will follow that individual whether it was a correct diagnosis or not. As the system currently exists, it is nearly impossible to clear up a mess that is made by a misdiagnosis of a non-existent "mental illness" as these people are also very often left to live in poverty conditions and don't even have the money that is now required to obtain copies of all of their medical records in order to challenge any of them. They very often have less rights than people in prison, who at least are assigned legal representation if they are unable to afford it themselves. Once they are diagnosed with a more severe "mental illness" they are less likely to be employed, more likely to be shunned by society, more likely to to live in poverty, more likely to have future medical conditions attributed to their "mental illness", and are very often repeatedly victimized and re-traumatized... including by the very people who are entrusted with protecting and caring for them.
It is imperative that the laws regarding involuntary hospitalization and treatment be re-evaluated, and that a system be put in place to make sure that a petition of commitment is not being initiated as a means of retaliation, control or to take an individuals rights away from them. Furthermore... there also needs to be a more thorough evaluation of a person's medical condition as there are numerous diseases that present with symptoms of "mental illness" when in fact they are medical conditions that can be safely, simply and effectively addressed. It is virtually unheard of that a psychiatric patient will be evaluated for brain lesions, an undetected Brain Injury (which has become a silent epidemic), hormonal imbalances, nutritional deficiencies, toxic reactions, seizures (of which there are over 40 types), and untreated infections... all of which can account for the symptoms of so-called "mental illness". Far too often, once a patient enters the "mental health care" system they become caught in a revolving door of going from one facility to another with intermittent placement in psychiatric half-way houses or living on the street! Tragically, this is precisely what has happened to many of the men and women who have served this country... as well as the more than twice as many women as men who are diagnosed with "PTSD". They deserve far better treatment than what they've received... and I do as well!
I ask that you take this into very serious consideration as you are working towards reforming the health care system.
Sincerely,
Dr. Julien Arbor
