Tuesday, June 26, 2007

Fraud Under False Claims

Fraud under the False Claims Act means that a contractor has knowingly presented a false claim for payment to the United States. The fraud can occur wherever federal or state monies are directly or indirectly used to purchase services or goods.
Fraud most often occurs in areas where the United States is spending the most money. In the late 1980s, many cases were brought for fraud in connection with the defense industry.
Since the early 1990s, more Qui Tam cases have been filed as a result of fraud against government medical health insurance programs – Medicare, Medicaid and Tri-Care (Military—formerly CHAMPUS).
Currently the False Claims Act is being used more and more for fraud which results from violations of labor or environmental statutes.
Types of Medical Fraud
"Phantom Billing" - Billing for tests not performed.
Performing inappropriate or unnecessary procedures.
Charging for equipment/supplies never ordered.
Billing Medicare/Medicaid for new equipment but providing the patient used equipment.
Billing Medicare/Medicaid for expensive equipment but providing the patient cheap equipment.
A drug or equipment supplier completing a Certificate of Medical Necessity (CMN) instead of the physician.
"Reflex testing" - Automatically running a test whenever the results of some other test fall within a certain range, even though the reflex test was not requested by a physician.
"Defective Testing" - When a test or part of a test was not performed because of technical trouble (ie: insufficient or destroyed sample, machine malfunction) but is billed for anyway.
"Code Jamming" - Laboratories inserting or "jamming" fake diagnosis codes to get Medicare/Medicaid coverage.
Offering free services or supplies in exchange for your Medicare or Medicaid number.
"Unbundling" - Using two or more Current Procedural Terminology ("CPT") billing codes instead of one inclusive code for a defined panel where rules and regulations require "bundling" of such claims. Submitting multiple bills, in order to obtain a higher reimbursement for tests and services that were performed within a specified time period and which should have been submitted as a single bill.
"Double Billing" — charging more than once for the same service, for example by billing using an individual code and again as part of an automated or bundled set of tests.
"Up Coding" - Inflating bills by using diagnosis billing codes that indicate the patient experienced medical complications and/or needed more expensive treatments. (eg., billing for complex services when only simple services were performed, billing for brand-named drugs when generic drugs were provided, listing treatment as having been for a more complicated diagnosis than was actually the case.)
"Phantom Employees" - Expensing employees or hours worked that do not exist.
"Improper Cost Reports" — Submitting false cost reports seeking higher Medicare reimbursements than permitted by actual facts.
Providing substandard nursing home care and seeking Medicare reimbursement.
Routinely waiving patient co-payments.

Thursday, June 21, 2007

Former US Attorney Tom Graves told to back off of Medical Fraud Case

Former US Attorney Tom Graves said he also had trouble over Robert Courtney, a local pharmacist who was convicted diluting Cancer drugs. Graves said he wanted to sieze $10 million dollars from Courtney and give it to the victims. And when Washington balked, he said “I got angry.” Telling them, “I am not the US Attorney for Washington, I am the US Attorney for western Missouri.”

The Ninth Man Out: A Fired U.S. Attorney Tells His Story
By Murray Waas, HuffingtonPost.com. Posted June 7, 2007.
http://www.alternet.org/story/53370/?page=1

When a Kansas City pharmacist was convicted of diluting drugs for cancer patients, former U.S. Attorney Tom Graves thought the victims and their families should be compensated. The FBI thought otherwise.

Although none of the street agents and prosecutors would say it, they believed that Grave's experience clearly made him exactly the right prosecutor for this crime.
Ketchmark says: "Without his leadership, I don't know if the case would have made its way through the criminal justice system."
According to Ketchmark, because Courtney's victims were so numerous, Graves arranged for all of the victims and their families to watch Courtney's sentencing on closed circuit television. Everyone who wanted to make a victim impact statement got their say. Everyone got their phone calls returned almost immediately, sometimes personally by Graves.
One was Delia Chelston. When her physician prescribed Taxol to help her fight her ovarian cancer, she was already long familiar with the chemotherapy agent.
Delia was with her son, Patrick, years earlier during a doctor's visit when Patrick was fighting colon cancer and told he didn't have long to live. He wanted to spend just one more Christmas with his 4-year-old son. "Was it possible? What would it take?" mother and son asked the doctor. A single dose of Taxol might keep him alive until Christmas, but he would not have a very high quality of life.
Patrick told his doctor, according to Delia, "No. My 4-year old has seen enough."
Courtney filled six prescriptions for Taxol for Delia to treat her ovarian cancer. Courtney's pharmacy was reimbursed exactly $11,447 for each dose. Delia says: "For all I know, they were bags of saline and water."
Delia needed to witness Courtney's sentencing for herself.
When a contingent of men moved towards the front of the courtroom "with leather attache cases, cashmere overcoats, good-looking watches," Delia was unsure at first who exactly they were, or which side they were on. She felt empowered when one of these well-dressed men -- perhaps Graves, it is unclear -- stood up and said, "We represent the United States of America."
In contrast, Courtney entered the courtroom in "shackles looking like he was twelve years old."
Calm one moment, the next Delia burst into tears: "I suddenly realized he was a human being." All vulnerable like that. "And he looked like he was about my son's age." The realization that Courtney was a human being like her was what was so disturbing -- that a human being could do what Courtney did.
Delia Chelston's ovarian cancer is now long into remission and she now only has to check in with her doctor once a year.
But how can justice be meted out for someone like Robert Courtney? Courtney will likely spend 30 years in prison.
When another one of Courtney's patients, also battling ovarian cancer, sued him in a civil suit, she was awarded $578,881 for lost wages and her medical expenses -- and $2.2 billion in punitive damages.
What did she believe Courtney's punishment should be?
She said after the verdict: "If I had my wish, they would paint all of our pictures on his cellblock wall so that when he goes to sleep at night, we are the last thing he sees and when he wakes up in the morning, we are the first thing he sees."
Somewhere today, there is another kid with cancer, like Todd Graves once was, lying flat on their back in a dorm room or a hospital room. And it will be cold going into the vein. The nausea will be followed by vomiting and when there is nothing left in their stomach the dry retching will start. If it's nitrogen mustard or methorexate, it will leave a metallic taste in their mouth. The open surgical wound will not heal because of the chemo, and even if they somehow survive, the physical and psychological wounds may never entirely heal.
They will be all alone attempting to make sense out of the senseless.
And they will wonder whether they should just give in, to succumb. What with the odds so stacked against them, is it worth one more toxic violation of their person with nothing assumed and far less guaranteed?
But if you are Todd Graves, perhaps the senseless has long ago come to make perfect sense: When he looks at the four children he was never supposed to have; that he would someday stand up in court for Delia Chelston.
When she recently testified before Congress, Monica Goodling, the former counselor to Attorney General Alberto Gonzales, suggested that the reason Graves was fired was not because he was loyal enough to the Bush administration but rather because he had been "under investigation" at the time of his dismissal. It was one last smack in the face. In reality, an internal Justice Department investigation had cleared him of specious allegations that he used a government car to go to a political event.
After surviving a cancer that nobody thought he would get through, Graves has the right perspective. He asks: "What possibly could Monica Goodling say about me that could have anything more than a passing consequence on my life?"

Monday, June 18, 2007

Modern Day Paul Reveres Ride to Washington by Jim J. Murtagh M.D

Modern Day Paul Reveres Ride to Washington

Tuesday, 22 May 2007, 11:20 amOpinion: James J Murtagh

By James J. Murtagh, M.D.

So through the night rode Paul Revere;And so through the night went his cry of alarmTo every Middlesex village and farm A cry of defiance, and not of fear,A voice in the darkness, a knock at the door
Paul Revere is America's most well known whistleblower. Present day patriots who sound the alarm when danger threatens our society rightly believe Paul Revere to be the founding father of whistleblowing. Like modern day patriots, he called on the Sons of Liberty to oppose the grave, immediate dangers posed by redcoat troops sent to impose the will of an unresponsive king and parliament. Last week, a conference as unique as Paul Revere's ride took place in our nation's capital. Whistleblower's Week in Washington (WWW) alerted the countryside of the grave dangers threatening our nation's security and well being. Modern patriots from a broad spectrum of government and private employers - health, environment, national security, civil rights, veterans, and more - have all banded together in a single meeting. The program was initiated and organized by the whistleblowers themselves. They were joined by more than 50 eminent public interest organizations in Washington to sound the alarm on dangers proven too real to be ignored. Hundreds of citizens took part.

Whistleblower's Week in Washington provided the time, place and voice for whistleblower patriots to band together for the first time to speak out against fraud, waste and corruption. These heroes and heroines represent a broad spectrum of government and private employees - national security, veterans, healthcare, environment, civil rights and justice.

Activities included congressional forums and hearings, an award ceremony for Senator Charles Grassley, rallies, and a film screening and book signings by eminent whistleblowers. Participants visited legislative offices to alert individual members of Congress of grave concerns.
Dr. Helen
Speakers and participants included both well-known figures and unfamiliar but important whistleblowers such as:
- Republican Senator Charles Grassley who was the keynote speaker. He was given a lifetime achievement award for his fight against waste, fraud and corruption in government. The award, like the conference, is completely bipartisan and has been endorsed by both blue-chip conservatives and liberals.
- Mahatma Gandhi's grandson Dr. Kanubhai R. Gandhi and EPA whistleblower and civil rights activist Dr. Marsha Coleman-Adebayo asked to keep America beautiful and safe from "Sea to Shining Sea.
- Religious leaders, including Rev. Walter E. Fauntroy, stressed the role of speaking the truth and the role of faith based initiatives in America's civil rights heritage.

- Climate Change Whistleblower Rick Piltz who suffered numerous retaliations after reporting that White House officials with no scientific training tampered with critical reports.

- Susan Wood who resigned in protest against the FDA's delaying of a ruling on whether the Plan B pill would be made more accessible to patients. She charged that then-acting FDA Commissioner Lester Crawford was interfered in FDA decisions. Physicians Dr. Helen Salisbury and Dr. Larry Poliner who puto their careers on the line to protect quality patient care. Dr. Janet Chandler battled to protect the humane treatment of her patients, and after more than a decade of legal appeals won a Supreme Court verdict upholding her stand for integrity in medical decisions for patient care.

- Coleen Rowley who blew the whistle on the FBI's negligence preceding the September 11 terrorist attack. Ms. Rowley was named as one of Time Magazine's Person's of the Year, along with conference supporter and Enron whistleblower Sherron Watkins.

Patriotic commitment united this band of whistleblowers who oppose hazardous, illegal and unsafe conditions, waste, fraud and abuse. They unite in order to maintain an open society, and to protect the rights of U.S. citizens to speak without reprisal on matters threatening the general welfare and defense of our nation.
In true Jeffersonian tradition, America's truth-tellers invited the press, Congress, and the American people to take part, to hear their stories, and to judge for themselves. Like Paul Revere, they rode to Washington to be heard throughout the land. New Sons and Daughters of Liberty must rise to defend our safety, our national defense and our honor.

The joint task force of WWW urges you to write your congressman, your senator, the media, and your friends to support the goal of a safer, freer America.
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(James Murtagh spent 20 years as an Intensive Care Unit physician. Dr. Murtagh is the founder of Doctors for Open Government and is a co-chair of Washington Whistleblower Week.)

Senator Chuck Grassley's Speech 5-14-2007 on Whistleblower Protections

Floor Statement of Senator Chuck Grassley on

May 14th, 2007


Here is the text of the speech Sen. Grassley made to the Senate:

http://grassley.senate.gov/index.cfm?FuseAction=PressReleases.View&PressRelease_id=5381





Mr. President, I announce today the kick-off of Whistleblower Week in Washington. This week and the events surrounding it are designed to promote, celebrate and educate Congress and the public about the courage and patriotism of whistleblowers.
These individuals often risk their careers to expose fraud, waste, and abuse in an effort to protect not only the health and safety of the American people, but the federal treasury and taxpayer dollars.
This week's events promoting and celebrating whistleblowers are important for all members of Congress and for the public as well. By highlighting what whistleblowers do, we provide insight into what it means to be a whistleblower and the important role they play in government and society.
For over two decades, I've learned from, appreciated and honored whistleblowers. Congress needs to make a special note of the role that whistleblowers play in helping us fulfill our Constitutional duty of conducting oversight of the Executive Branch. As a Senator, I've conducted extensive oversight into virtually all aspects of the federal bureaucracy.
Despite the differences in cases from agency to agency and department to department, one constant remains: the need for information and insight from whistleblowers.
This information is vital to effective Congressional oversight. Documents alone are insufficient when it comes to understanding a dysfunctional bureaucracy. Only whistleblowers can explain why something is wrong and provide the best evidence to prove it. Moreover, only whistleblowers can help us truly understand problems with the culture at government agencies.
Whistleblowers have been instrumental in uncovering $700 being spent on toilet seats at the Department of Defense. These American heroes were also critical in our learning about how the FDA missed the boat and approved Vioxx, how government contracts were inappropriately steered at the GSA, or how Enron was cooking the books and ripping off investors. Courageous employees blew the whistle and shed much needed sunshine on problems that would otherwise never see the light of day.
Like all whistleblowers, each whistleblower in these cases demonstrated tremendous courage. They stuck their necks out for the good of all of us. They spoke the truth. They didn't take the easy way out by going along to get along, or looking the other way, when they saw wrongdoing. The whistleblower who I call the grandfather of all whistleblowers -- Ernie Fitzgerald - says that whistleblowers are guilty of "commiting truth." For doing so, they're about as welcome as a skunk at a Sunday afternoon picnic.
I've said it for many years without avail, but I'd like to see the President of the United States have a Rose Garden ceremony honoring whistleblowers. This would send a message from the very top of the bureaucracy about the importance and value of whistleblowers. They deserve it, and we all ought to be grateful for what they do and appreciate the very difficult circumstances they often have to endure to do so, sacrificing their family's finances, their employability, and the attempts by powerful interests to smear their good names and intentions.
Earlier today I had the opportunity to speak at a panel that gathered to discuss the plight of whistleblowers at the Federal Bureau of Investigation. These individuals discussed the hurdles they faced in exposing the truth. Further, they discussed the lengths at which some bureaucrats will go to prevent the truth from coming out.
Unfortunately, these former agents also discussed a culture that keeps problems internal and circles the wagons when things go wrong. Often times this culture shoots the whistleblower instead of addressing the problem.
Mr. President, retaliation against whistleblowers should not be tolerated. We have an obligation to ensure that those who retaliate are punished.
Congress has recognized the need to protect whistleblowers and I have used my experience working with whistleblowers to promote legislation that protects them from retaliation. Legislation such as the Whistleblower Protection Act, the Sarbanes-Oxley Act, and the False Claims Act recognize the benefits of whistleblowers and offer protection to those seeking to uncover the truth. For example, whistleblowers have used the False Claims Act to help the federal government recover nearly $20 billion since Congress passed my amendments to it in 1986.
These laws are a good step, however, our work in this field is unfinished and more can be done.
The next step in protecting whistleblowers was filed in January and is currently pending before this body. S.274 – the Federal Employee Protection of Disclosures Act – will provide much needed updates to federal whistleblower protections. I'm proud to have been an original cosponsor of S.274 and believe the Senate should move this important legislation. Unfortunately, this bill was introduced but not addressed in the 109th Congress. It is my hope that this chamber will act on S.274 and improve protections for whistleblowers.
Mr. President, I urge all my colleagues to join in support of S.274 and swiftly move this important legislation to help protect whistleblowers. I also urge all my colleagues to attend the events that are occurring all week to help celebrate whistleblowers and all they have done to benefit the work of Congress and more importantly, all they have done to make America a safer, stronger, and better nation. I yield the floor.


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Sunday, June 17, 2007

Fired US Attorney John McKay Speaks Out

Fired US Attorney John McKay Speaks Out By Jason Leopold t r u t h o u t Report

http://www.truthout.org/docs_2006/061207J.shtml

Tuesday 12 June 2007

John McKay, the US attorney for western Washington state, who was fired last year along with eight other federal prosecutors, said "many eyebrows were raised" when Bradley Schlozman, a former official in the Justice Department's civil rights division, replaced Todd Graves, the US attorney for Kansas City, Missouri, last year.
"Many US attorneys were concerned when Mr. Schlozman was appointed," McKay told me shortly after he gave the keynote address to the Beverly Hills Bar Association's 53rd annual Supreme Court luncheon on June 5.
Schlozman testified before the Senate Judiciary Committee last week. He came under fire for filing federal criminal charges of voter fraud against members of a Democratic organization on the evening of the November 2006 mid-term election. The case was later dismissed. Justice Department policy states that charges related to voter fraud should not be close to an election. Schlozman said he received approval to file the voter fraud charges from a Justice Department official who was instrumental in drafting the guidelines urging that US attorneys avoid filing charges claiming voter fraud at the height of an election.
"He was the deputy in the [Justice Department's] civil rights division, but I don't think he had the sort of background and experience we would have expected as a United States attorney," McKay told me. "So I would say it would be true that many eyebrows were raised when he was first appointed. Of course, we didn't know that Todd Graves had been forced to resign ... and it appears that he was forced to resign at least in part because Mr. Schlozman himself was trying to push the prosecution of voter fraud cases."
McKay believes his ouster was due in part to the fact that Republicans were angry that McKay did not convene a federal grand jury to pursue allegations of voter fraud related to the 2004 governor's election in the state in which Democrat Christine Gregoire defeated Republican Dino Rossi by a margin of 129 votes.
McKay told me during an exclusive interview recently that there were some Republicans in his district with close ties to the White House who demanded he launch an investigation into the election and bring charges against individuals for voter fraud, despite the fact there was no evidence to support the claims of vote-rigging.
He said he believes that he was not selected for a federal judgeship by local Republicans in Washington state last year because he did not file criminal charges against Democrats for voter fraud related to the 2004 governor's election. McKay said he felt he was not being treated fairly, and requested a meeting with then-White House Counsel Harriet Miers to discuss the issue, as well as his application for US district judge in his home state.
"I asked for a meeting with Harriet Miers, whom I had known since work I had been involved in with the American Bar Association, and she immediately agreed to see me in August of 2006," McKay told me. McKay said that when he met with Miers and her deputy William Kelley at the White House, the first thing they asked him was, "Why would Republicans in the state of Washington be angry with you?"
That was "a clear reference to the 2004 governor's election," McKay said in characterizing Miers and her deputy's comments. "Some believed I should convene a federal grand jury and bring innocent people before the grand jury."
"All of my actions as United States attorney had been coordinated with the Department of Justice," McKay told me. He said he explained that to Miers and Kelley, and informed them that there was no evidence of voter fraud to support launching a federal inquiry into the election.
The meeting with Miers and Kelley did not have a positive impact on McKay's request to be appointed a judge at US District Court. Instead, McKay said it appears that he landed on the so-called list of US attorneys to be fired just a few weeks after his meeting with Miers and Kelley.
But the question that remains unanswered is who put his name on the list?
McKay said he believes it came directly from high-level officials in the White House. McKay said he believe Attorney General Alberto Gonzales knows the identity of the officials who selected the US attorneys for termination, but Gonzales has lied to Congress in order to protect the administration.
Jason Leopold is a former Los Angeles bureau chief for Dow Jones Newswire. He has written over 2,000 stories on the California energy crisis and received the Dow Jones Journalist of the Year Award in 2001 for his coverage on the issue as well as a Project Censored award in 2004. Leopold also reported extensively on Enron's downfall and was the first journalist to land an interview with former Enron president Jeffrey Skilling following Enron's bankruptcy filing in December 2001. Leopold has appeared on CNBC and National Public Radio as an expert on energy policy and has also been the keynote speaker at more than two dozen energy industry conferences around the country.
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Unwarranted Court Ordered Medication

http://psychrights.org/index.htm


PsychRights Law Project for Psychiatric Rights
Unwarranted Court Ordered Medication: A Call to Actionby James B. Gottstein, Esq.November, 2002 (minor modifications to 4/24/2003; Section on Alternatives added 9/26/2004)
The purpose of this article is to outline a primarily legal process directed toward ending the wide spread practice of subverting the legal process and subjecting people diagnosed as mentally ill to unwarranted court orders requiring them to submit to harmful psychiatric medications. It is not the intent here to support the conclusions that these medications are dangerous, do great harm to many people and are actually counter-productive as widely used. Nor is it the purpose here to support the proposition that the legal process is being subverted. These are covered in other articles, such as Psychiatry: Force of Law, Scientific Research By Topic and Psychiatric Myths. The purpose of this article is to describe a campaign to try and bring honesty into the administration of this legal aspect of the mental health system. People who have a lot of experience with the mental health system, particularly "Mental Health Consumers," will say, "of course the system is extraordinarily unfair and harmful and based on lies." However, the vast majority of the general population not only has no idea what goes on, but will absolutely refuse to believe that the everyday horrors of the mental health system are true or widespread.
The current situation for mental health consumers/survivors/ex patients (C/S/X) or the "psychiatrized" can be analogized to the legal plight of African-Americans before the great legal campaign led by Thurgood Marshall and the NAACP in the 1940's and 1950's established their rights as full citizens and to be free from legally sanctioned (and mandated) discrimination. The thesis of this article is that a similar campaign should be mounted on behalf of people diagnosed with mental illness.
Most people will say, "But some people clearly need to be subjected to these kinds of court orders for the protection of the populace and themselves." The truth is, however, that this is the logic used for the wholesale locking up and over medicating people who do not meet the legal requirements for these court orders. In other words, the point is that the mental health system should be required to follow the constitutionally mandated and statutory rules as to who should be subject to these court orders.
The Force of Law article is intended to provide an overview of the legal setting, while this article is intended to describe what might be done about it. However, there are two primary legal concepts that drive this proposal: First, the science behind what is being done does not pass legal muster, and Second, the process by which forced medication and treatments are judicially approved are legally faulty in that perjury is regularly committed to obtain these court orders and, in some cases, the standards themselves are unsanctioned by the U.S. Supreme Court.
Outline of Action Plan
Discussion/Rationale
Introduction
Research
Lack of science behind the DSM IV
Improper Use of Psychiatric Medications.
Psychiatrists' inability to predict violence.
???Lack of Evidence to Support the Biologic Model of Mental Illness???
Manual
Identify Appropriate Cases For Appeal
Identify and Employ Expert Witnesses
Pursue Selective Appeals
Public Education Campaign
The Necessity of Alternatives
Organization
Discussion/Rationale
Introduction
A very important thing to be kept in mind is that the public has been so influenced by the Pharmaceutical Industry's public relations campaign as supported by "mainstream psychiatry" and that the current legal system for those threatened with forced treatment is such a "Catch-22" system, that progress probably needs to be incremental. To illustrate this point, the advent of the World Wide Web has allowed virtually anyone to self-publish their views (like this article) and there are a large number of web pages and web sites devoted to describing, analyzing and exposing these psychiatric-legal abuses. In addition, there is a growing chorus of disaffected psychiatrists and other professionals who are decrying the current situation. However, the effects of these seem heretofore negligible. A large part of the reason for this is probably the "preaching to the choir" aspect of what is happening in that the people visiting these websites and reading these books are largely already on the same side of the issue. Probably more than that, though, is the well organized public relations efforts on the other side that has the ear of the mainstream media. In order to impact the public's perception, a carefully thought out and well-executed information effort is likely to be required. With respect to the Catch-22 aspect of the legal system, as the Force of Law article shows, the conventional wisdom is that the United States Supreme Court has ruled not only that federal rights in this area are determined under state law (an interesting concept), but that the forced treatment is permitted unless it is "a substantial departure from accepted professional judgment, practice or standards." See, Youngberg v. Romeo and Mills v. Rogers. The thesis here is that "accepted professional judgment, practice or standards" is itself unsound. However, under the Supreme Court's analysis, that it is "accepted" is sufficient, regardless of whether what is accepted is valid. Catch-22 (but susceptible to correction). One of the accepted professional practices is if someone doesn't want the medication, that in itself is proof that the person is incompetent to make the decision. Catch-22. So, in order to turn this around, the psychiatric profession's legal edifice must be taken down brick by brick because a full frontal assault on the fortress is not likely to be successful at this time. The same is true on the public education front.
The inadequate representation of people faced with forced treatment has been pointed out numerous times. The problem, however, is not likely to be because the people involved are incompetent or unmotivated, but because they are not allowed the resources and tools to do the job adequately. For example, in Alaska, where I practice law, there is a lone public defender assigned to represent all the consumers in all of the commitment and forced medication hearings (unless there is a conflict of interest due to representing other clients), which amounts to over 20 per week. This alone precludes effective representation. There is no funding for experts, nor even for depositions (even if she had the time to do them). And, as a stark illustration that the powers that be don't really want effective representation, not a single reported case can be found interpreting the Alaska involuntary commitment and forced medication statutes. It is only through careful preparation and presentation of the cases and then pursuing appeals can what is happening at the trial or hearing proceedings be corrected.
Research
Lack of Science Behind the DSM IV
As is apparent from the cases mentioned, the courts currently accept that psychiatry's diagnostic system is scientifically valid. It is my impression that this is not true to the extent that it reliably and consistently diagnoses people and that a rigorous review will so demonstrate. To the extent that it can be shown the DSM-IV is invalid, it technically defeats the case for forced treatment, because every formulation of the right to forcibly medicate or involuntarily commit someone starts with the requirement that the person be found to be "mentally ill." If the whole system for determining someone to be mentally ill is faulty, then logically they can't get to first base on this prerequisite. As a practical matter, however, this usually won't be enough.
Under evidence rules, an expert is not supposed to be allowed to testify as an expert unless the science is proven. It seems that there have been a number of cases recently where the consumer's attorney has attempted to follow this approach to get "expert testimony" thrown out, but have been unsuccessful. There needs to be a research debunking roadmap that helps attorneys do this. And for the right cases, the adverse opinions should be appealed.
However, care needs to be taken with this approach because normal people and judges believe through their own experience that they know some people are mentally ill (heuristic knowledge) and thus, to argue that there is no such thing as mental illness will cause one to lose credibility. What needs to be done here is to establish the extreme arbitrariness and invalidity of the classification system and throw doubts on the validity of any particular diagnosis. One factor that ought to help is it is my experience that any "consumer" who has been around the system for any length of time will normally have four or five or even more different diagnoses. It should therefore be possible to cast doubt on the idea that an authoritative diagnoses of mental illness has been made when the "experts" can't come to a uniform conclusion as to which exact disorder the person has.
Improper Use of Psychiatric Medications.
One of the great Catch 22's of the system is the issue of "informed consent." The rule basically is that no one can be forced to take medication if they make a competent decision to refuse the medication. However, the person's refusal to take the medication (or denial that he or she is mentally ill) is cited by the psychiatrist as proof that the person is incompetent to make the decision. The psychiatrists normally seriously downplay, to the point of plain lying, the dangerousness, harmfulness and other side effects of these drugs (to the extent they even know them). Exposing their mendacity (not being truthful) and ignorance should disqualify them as expert witnesses. The reality will probably be that, at best, their credibility will be weakened. To be a bit specific, it is my impression that these drugs are used and the forced medication regimes have never been shown to be effective or safe. For example, I think that with Xanax, no clinical trials went for more than 8 weeks and that all of the benefits disappeared after the first four weeks, yet it is prescribed for long term use. Equally important, Xanax (as most of the drugs), when withdrawn cause serious withdrawal symptoms, including psychosis. Similarly, most of the drugs have been shown to cause psychosis. The prescribing docs tend to ignore this information or are not aware of it. If they ignore the information, more specifically if they are not taking it into consideration when deciding the appropriate course of treatment, they are violating the law, while if they are ignorant of it, they are not much of an expert.
A drug by drug analysis of psychiatric medications should be undertaken, including analysis of the various studies involving the drugs. In other words, Dr. Breggin cites many studies for his conclusions in his books as does Bob Whitaker, in the incredibly good Mad in America: Bad Science, Bad Medicine, and the Enduring Mistreatment of the Mentally Ill. These studies should be pulled, analyzed and lines of questioning developed to discredit the psychiatrist's testimony. For example, experience teaches that the docs do not even remotely disclose the side effects of the drugs, nor do they prescribe them in accordance with their approvals.
Psychiatrists' inability to predict violence.
The other pillar to an involuntary commitment order is that the person be a danger to himself or others. It is my impression that the research shows neither psychiatrists nor anyone else can reliably predict violence or suicide. To the extent that this can be shown, it technically defeats the ability to commit someone.
???Lack of Evidence to Support the Biologic Model of Mental Illness???
Mainstream psychiatry has been very successful in convincing the public and courts that mental illness is biological. The implication of this is that medical intervention (i.e., medicine) can fix this. However, experience from talking with consumers and from research suggests that this is at least largely not the case. Moreover, everything I have read suggests that there is no evidence for this, at least as to Schizophrenia. See e.g., Psychiatric Myths. And if the problem is not biologic, then a physical treatment becomes much less compelling. The question marks indicate that proving this may not be necessary to prevailing on cases and may unnecessarily create credibility questions about the case.
Manual
It seems to me that attorneys attempting to protect people's rights against forced treatment could benefit greatly from a "how to" manual. Areas that the manual can/should address include:
Legal Resources
Mental Disability Law: Civil and Criminal, Michael Perlin
Brief/Legal Research Bank
Expert Report Bank (i.e., in affidavit form, which can be submitted as testimony)
Deposition Template
My experience is almost completely limited to Alaska, but I suspect it is true elsewhere that depositions before a forced medication or involuntary commitment hearing is rare, if not unheard of. However, it seems to me that where available (and if not, its availability should be pushed), taking the deposition of the psychiatrist to be called on to support the forced treatment is essential for the same reasons that it is essential in any other serious civil litigation. If not more so because experience teaches that the psychiatrists' bases for their opinions can be very fluid and thus it is important to get them nailed down on exactly what it is that creates the specific diagnosis of mental illness and the prediction of dangerousness. Or what exactly is the criteria being met to find someone is (in Alaska) "gravely disabled?"
Equally, if not more, important is to nail down the learned treatises and other authoritative works the expert witness (psychiatrist) is relying on to arrive at his or her expert opinion. And in fact what learned treatises and other authoritative works makes the expert an expert. Especially with respect to the former, the authority the psychiatrist says he or she relies on will quite probably not support the opinion.
In addition, the deposition is important to establish the setting relevant to the informed consent/competency to refuse the medication in that it appears fairly likely that one can lead the psychiatrist into either admitting that relevant information about the harm and dangerousness of the medications were not considered or even that that the psychiatrist is unaware of their rate and severity.
Cross Examination Template
A road map on how to attack "expert" psychiatric testimony should be included.
Identify Good Cases
However, to the extent that it can be done, as many people as possible should be represented as well as possible in these involuntary medication and commitment cases. The idea of the Manual is to provide a roadmap for how to attack these cases. And, of course, it is these cases from which the appeals will selected.
Identify and employ Expert Witnesses
Since these cases are built on the "expert" testimony of the psychiatrist, good, qualified expert witnesses are needed to rebut the this testimony. It is theoretically possible to do some through voir dire and cross examination, but that will be very difficult as the sole means. Therefore, a pool of good, qualified, credible expert witnesses will need to be identified, and then employed on specific cases. The obvious ones nationally are Dr. Breggin and Dr. Mosher and the psychiatrist authors of other books and criticisms of the existing regime. For purely financial reasons, it will be good if local psychiatrists can be found as well.
Pursue Selective Appeals
The best cases to go up on appeal will have good facts (i.e., egregious conduct and clear violations of the standards) with clearly erroneous court rulings. The closer the cases going up meet this profile, the likelier it is that good law will be developed. The judges at the trial/hearing level have so "bought into" the current system that it will be extremely difficult to get them to look at the testimony objectively without being forced to through appeals. In other words, if in one of the 20 cases that a judge is going to hold that week on forced medication is a full-blown attack on the science that is suggested here, will the judge accept this when the clear implication is it was also wrong for every one of the 19 other times he ordered medication be forcibly administered defendants/respondents that week? Probably not. Although, hopefully, this will change over time. In addition, as set forth in the Force of Law article, the trial/hearing level is basically a "wink and nod" approach to the legal requirements for issuing the orders. Maybe this view is naive, but appellate courts are much more likely to take compliance with the set standards and rules seriously.
Public Education Campaign
The legal effort might be considered a walk in the park compared to the difficulty of effecting public opinion in the face of the millions/billions of dollars being spent by the pharmaceutical companies and the "learned' pronouncements of the psychiatrists. Having good, even excellent, help in the public relations department, will be invaluable. However, there are some principles to be considered. First, there should be a group of people -- Recovered Consumers and Psychiatrists -- who can speak to the issue whenever something comes up in the media. At the risk of offending the many super people that should be on the list, but are not because this list is just illustrative, really excellent Recovered Consumers are Dan Fisher, M.D., Judi Chamberlin, Susan Rogers, and Laurie Ahern. It is important that the people doing this look mainstream and professional and that the message is perceived as credible. Again, the experts are people like Dr. Peter Breggin and Dr. Loren Mosher (it is unclear whether Dr. Szasz's message, while essentially correct, fits the bill of being credible to the public). Basically, the public education campaign consists of not only being in the media's face every time an issue comes up, but to be constantly working with them to develop stories about what we are trying to get known. We want them to automatically call us when something comes up to get our side. These are really hard things, because the issue most often comes up when some sensationally terrible crime is committed by someone diagnosed as mentally ill (and having stopped their medication). It is essential that the effort be constant and ongoing and not just when sensational events flare. There should be "exposés" on the effect of these drugs. There should be "investigations" behind the science and (hopefully) scandals over the pharmaceutical companies' behavior. These are developed through working with the media.
The Necessity of Alternatives
Just as it is deemed futile to make any meaningful changes through court actions without also fighting the battle of public opinion, unless there are alternatives to psychiatric drugging available, it will be virtually impossible to make any significant progress. There are some alternative programs, but many more are needed. Two programs that are trying to get open are Soteria New England and Soteria-Alaska, both of which are based on Dr. Loren Mosher's Soteria House program that proved many people diagnosed with schizophrenia can recover to lead full lives if they are allowed the chance to get through their crisis without being drugged.
Organization
First, I know the opinions here will not be shared by everyone. That's okay and I'm certainly not locked into any specific organizational structure. In addition, more than one organization can (and hopefully will) participate.
In my opinion, this effort should be directed by Recovered Consumers/Surviviors/Ex-Patients (Non-Consumers to be eagerly welcomed in advisory and supporting capacities). While the current protection and advocacy programs are no doubt doing what they think is right, to me at least, there is more than a little "fiddling while Rome burns" aspect of focusing so much on discrimination and benefits when hundreds of thousands of people are being illegally subjected to permanently brain damaging treatments. (The other big issue in my view, which is not being addressed here, is the wholesale jailing of people because they have a mental illness -- actually after having been made mentally ill by the drugs). A Recovered Consumer-run program would hopefully keep the focus on track and on the big issues. Whether Recovered Consumer directed or not, selection of the people to direct the effort is the single most important part of making this work.
Realistically, I think the effort needs to be privately funded with substantial augmentation by pro bono attorneys and other volunteers. Everyone who wants to can contribute in some way. However, I think that it is imperative that no funds be taken from local, state or the federal government ("Gummint") I don't think it is realistic to think that the Gummint is going to tolerate paying for a massive assault on its processes for subjecting people to these treatments. In addition to no Gummint money, it should go without saying that no pharmaceutical money can be permitted into this Project. It also seems quite possible that a good organization of volunteers can be recruited and a pretty serious effort can be mounted without a lot of money for staff. In fact, I think it can get off the ground right now with no money at all through volunteer efforts and in-kind donations. The initial response to this Call to Action has been gratifying in that respect. Think of a legal version of the Gesundheit Institute. The Manual is intended to allow individual lawyers to step into one of these proceedings with a lot of ammunition and there is a lot of potential for participating by lawyers acting for free in the public interest (pro bono). The Project can also help line up expert witnesses, public speakers, media contacts, etc. Volunteers, with direction, can help put together the scientific evidence necessary to discredit the current system in court.
Another potential source of help, is law students. For example, a new program at Harvard Law School, called JustAdvocates has been established as: "The resource for law students and young lawyers who want to be more than just advocates, they want to be JUST advocates."
Money does have to be obtained for expert witness fees I think (don't ask). The Civil Rights Movement of the 1960's was won with volunteers (including demonstrators), not paid staff. There does need to be a basic infrastructure of paid staff and, of course, people have to make a living, but the excitement and results generated by committed volunteers can not be duplicated. When I evaluate political campaigns, for example, I always look to see which ones have those volunteers, because those are the ones to watch. On the other hand, money is necessary and there will be a need to pay for some infrastructure and for some solid professional expertise.
The bottom line is how can anyone who knows what is going on, not do their part to try and stop it?
The Law Project for Psychiatric Rights' Certificate of Incorporation was received November 12, 2002. The organizational meeting was held November 12th and the application for Tax Exempt Status under §(501(c)(3) of the Internal Revenue Code was submitted December 2nd. The Advance Ruling granting Tax Exempt Status under §(501(c)(3) of the Internal Revenue Code was granted April 1, 2003. This non-profit can try to mount its own effort, join in with other organizations in a coordinated effort, or is potentially available to be the vehicle to implement this Call to Action on a larger (i.e., National) scale.

THE NEEDS OF PEOPLE WITH PSYCHIATRIC DISABILITIES DURING AND AFTER HURRICANES KATRINA AND RITA: POSITION PAPER AND RECOMMENDATIONS

THE NEEDS OF PEOPLE WITH PSYCHIATRIC DISABILITIES DURING AND AFTER HURRICANES KATRINA AND RITA: POSITION PAPER AND RECOMMENDATIONS

National Council on Disability 1331 F Street, NW, Suite 850Washington, DC 20004202-272-2004 Voice202-272-2074 TTY202-272-2022 FaxLex Frieden, Chairperson

July 7, 2006

CONTENTS

EXECUTIVE SUMMARY
I. INTRODUCTION
II. THE PRE-HURRICANE PSYCHIATRIC DISABILITY POPULATION IN THE GULF COAST REGION
III. MAJOR FINDINGS AND RECOMMENDATIONSA. In Violation of Federal Policy and Law, People with Psychiatric Disabilities were Discriminated Against During Evacuation, Rescue and Relief Phases. B. Mismanaged Evacuations Resulted in the Loss, Mistreatment, and Inappropriate Institutionalization of People with Psychiatric DisabilitiesC. People with Psychiatric Disabilities Were Not Included in Disaster Planning or Relief and Recovery EffortsD. Disaster Management Efforts Often Failed Because No Individual or Office Had Responsibility, Accountability, and Authority for Disability Related IssuesE. Disaster Plans Were Shortsighted and Relief and Recovery Services Were Terminated Prematurely
IV. RECOMMENDATIONS FOR SPECIFIC BRANCHES OF GOVERNMENT AND FOR THE AMERICAN RED CROSSA. The United States CongressB. The Executive Branch of the United StatesC. The Legislative Branch of State GovernmentsD. The Executive Branch of State GovernmentsE. The American Red Cross
V. CONCLUSION
EXECUTIVE SUMMARY
In Fall of 2005, the destructive forces of Hurricanes Katrina and Rita wreaked an emotional as well as a physical toll on residents of the Gulf Coast region. Millions of Americans from across the country reached out to hurricane survivors, opening their homes and their hearts. Government employees at local, state and federal levels worked long and hard to help evacuate and rescue people in the Gulf Coast. Many of these people are still in the Gulf Coast helping to rebuild communities. In the months since the hurricanes devastated the Gulf Coast, media coverage of the hurricane survivors has waned. However, for hurricane survivors with psychiatric disabilities, the hurricanes’ destruction resulted in “trauma that didn’t last 24 hours, then go away. ... It goes on and on.” Some of these challenges were unavoidable. As one government official said, “No one ever planned for ‘what happens when your social service infrastructure is completely wiped out.’” Nonetheless, many of the problems could have been avoided with proper planning. As NCD predicted in its April 2005 report, Saving Lives: Including People with Disabilities in Disaster Planning, “[i]f planning does not embrace the value that everyone should survive, they will not.” As a result of its research, NCD found that much pre-Katrina disaster planning did not contemplate the needs of people with psychiatric disabilities, and as a result, many people died or unnecessarily suffered severely traumatic experiences. This paper includes the following major findings and recommendations, as well as various specific recommendations for emergency management officials and policymakers at the local, state and federal levels.
Major Findings
In Violation of Federal Policy and Law, People with Psychiatric Disabilities were Discriminated Against During Evacuation, Rescue, and Relief Phases
First responders and emergency managers such as shelter operators often violated the civil rights requirements of the Americans with Disabilities Act and Section 504 of the Rehabilitation Act. As a result, people with disabilities did not have access to critical services and relief. Some of the most common forms of discrimination included: People with disabilities were segregated from the general population in some shelters while other shelter simply refused to let them enter. People with psychiatric disabilities were denied access to housing and other services because of erroneous fears and stereotypes of people with psychiatric disabilities.
Mismanaged Evacuations Resulted in the Loss, Mistreatment, and Inappropriate Institutionalization of People with Psychiatric Disabilities
Disaster response plans often did not include protocols to evacuate people with psychiatric disabilities. During evacuations, emergency officials physically lost residents of group homes and psychiatric facilities many of who are still missing. Others have not or cannot return home because essential supports have not been restored or because the cost of living has increased too much. When people with psychiatric disabilities arrived at evacuation locations – ranging from state parks to churches – those locations often were not prepared to meet the medical and mental health needs of the evacuees with psychiatric disabilities. Many people with psychiatric disabilities never made it to evacuation shelters because they were inappropriately and involuntarily institutionalized. Some of these people still have not been discharged, despite evaluations that indicate they should be.
People with Psychiatric Disabilities Were Not Included in Disaster Planning or Relief and Recovery Efforts
Most emergency plans were not developed with the inclusion of people with disabilities, psychiatric or otherwise. As a result, emergency planners could not anticipate the many special needs required by evacuees with disabilities. Houston was an exception to that general rule, where people with disabilities were significantly involved with a local emergency response coalition.
People with psychiatric disabilities were not included in relief and recovery efforts. For example, there have been many calls for greater screening, diagnostic and professional treatment capacity after natural disasters. However, professional treatment after a disaster should be augmented by peer support from clients of the mental health system. The Substance Abuse and Mental Health Services Administration (SAMHSA) provided some funding for peer support training.
People with psychiatric disabilities were not included in the development of plans to evacuate citizens using police assistance. Uniformed police officers often were not trained to work with people with psychiatric disabilities, and as a result, many evacuees with psychiatric disabilities had negative evacuation experiences with the police.
Disaster Management Efforts Often Failed Because No Individual or Office Had Responsibility, Accountability, and Authority for Disability Related Issues
As in previous disasters, there was a lack of coordination and communication, not only between levels of government, or between different agencies at the same level of government, but between people at different levels in the same agency. One disability advocate recalled, “When I asked [who had ownership of disability issues] in the state I was assessing, no one raised their hand. I asked five different logistical places, and no one claimed ownership of disability-related issues for the state... anything coordinated out to the state levels was fragmented, not standardized, not coordinated across the board.”
Disaster Plans Were Shortsighted and Relief Services Were Terminated Prematurely
Accumulated experience from other highly traumatic events – such as September 11th and the Oklahoma City bombing – indicates that suffering and symptoms related to traumatic events often emerge years later. Just as policymakers should make long-term plans for disaster survivors’ physical needs, such as housing and employment, policymakers also should plan for long-term psychiatric needs. However, many relief services have been prematurely terminated. For example, the Federal Emergency Management Agency’s (FEMA) “long-term” crisis counseling programs expire after nine months; however, mental health experts predict major eruptions of post-traumatic stress disorder on the one-year anniversary of the disaster.
Major Recommendations
Nondiscrimination in the Administration of Emergency Services
The federal National Response Plan and state and local emergency plans should require that services and shelters be accessible to people with disabilities, including people with psychiatric disabilities (who live independently or in congregate living situations such as hospitals, group homes, or assisted living), in compliance with the Americans with Disabilities Act and Section 504 of the Rehabilitation Act. State plans should be reviewed by independent disability experts familiar with that state.
Plans for the Evacuation of People with Psychiatric Disabilities
Evacuation planners should have a plan that (a) tracks the transfer of residents of group homes and psychiatric facilities; (b) maintains contact between people with psychiatric disabilities and their family members and caretakers; (c) helps facilitate the return of evacuees to their homes; (d) ensures that sites that receive evacuees are equipped to meet the needs of people with psychiatric disabilities; and (e) prevents the inappropriate institutionalization of evacuees with psychiatric disabilities.
Inclusion of People with Psychiatric Disabilities in Emergency Planning
People with psychiatric disabilities must be involved at every stage of disaster and evacuation planning and with the administration of relief and recovery efforts. Communities should develop interagency, multi-level disaster planning coalitions that include people with disabilities, similar to the coalition developed in Houston.
Person or Office Responsible for Disability Issues During Disasters
A single person or office must be responsible, accountable and able to make decisions related to disability issues. This person or office would be responsible for training first responders and organizing disability-specific evacuation, relief and recovery efforts. This person or office would also serve as a communication link between people with disabilities and the respective local, state or federal government.
Disaster Relief Should Continue for at least Two Years After the Disaster
Relief and recovery efforts should continue for at least two years from the date of the disaster, including Medicaid waivers, HUD housing waivers, and FEMA housing for people with disabilities. Disasters often result in long-term psychiatric consequences for people, and in some cases, the traumatic impact of the disaster does not manifest itself until many months or years later. Additionally, the social service infrastructure in some locations was utterly wiped out. Emergency planners should ensure treatment continuity by planning for relief services to be available for at least two years after the disaster.
Many of these findings and recommendations align with NCD’s 2005 report, Saving Lives: Including People with Disabilities in Disaster Planning, available on the web at http://www.ncd.gov/newsroom/publications/2005/saving_lives.htm. NCD encourages policymakers, emergency planners and people with disabilities to carefully review that report. NCD stands ready to provide guidance to those who are ready to make their emergency plans and services more accessible to people with disabilities. As emergency managers and policymakers create plans that seek to ensure that all people, regardless of disability, survive catastrophes such as Hurricanes Katrina and Rita, we will incorporate the principles of inclusion and nondiscrimination into our national consciousness.
INTRODUCTION
Hurricanes Katrina and Rita devastated the lives of many people who lived on the Gulf Coast. Graphic video footage and news reporting have produced a vivid image of the physical toll of the devastation on homes, businesses and human lives. The media also showed how millions of Americans from across the country reached out to hurricane survivors, opening their homes and their hearts. Government employees at local, state and federal levels worked long and hard to help evacuate and rescue people in the Gulf Coast. Many of these people are still in the Gulf Coast helping to rebuild communities. In the months since the hurricanes devastated the Gulf Coast, media coverage of the hurricane survivors has waned. Yet the hurricanes’ destructive forces wreaked an unrelenting emotional toll on residents of the Gulf Coast region. For hurricane survivors, the hurricanes’ destruction resulted in “trauma that didn’t last 24 hours, then go away... It goes on and on,” according to Dr. Crapanzano, the Louisiana medical director for the Office of Mental Health.1 As the new hurricane season approaches, it is likely that similar mental health issues will surface and existing mental health problems may be exacerbated. In preparation for future hurricane seasons and other disasters, policymakers and consumers of mental health services must learn from the successes and failures of the emergency management during Hurricanes Katrina and Rita. The National Council on Disability (NCD) is the federal agency charged with providing advice to Congress and the President on improving the lives of people with disabilities. In this paper, NCD addresses the impact of Hurricanes Katrina and Rita on people who were already struggling emotionally before the hurricanes hit and on people who developed psychiatric disabilities as a result of the hurricanes’ devastation. This paper also provides recommendations to improve the provision of mental health services during and after a disaster.
People with psychiatric disabilities were discriminated against in their access to disaster relief during and after the hurricanes. For example, according to some Katrina survivors with psychiatric disabilities, the Federal Emergency Management Agency (FEMA) excluded them from its trailers because of concerns that the individuals’ psychiatric disabilities made them dangerous, despite assurances from mental health professionals that the individuals were not dangerous.2 FEMA gave rental assistance to individual families, but turned down requests to reimburse church groups that provided housing to former residents and staff of group homes for people with psychiatric disabilities.3 The American Red Cross barred sign language interpreters for people who are deaf, and shelter officials also turned away disability protection and advocacy groups in some shelters in Louisiana, Mississippi and Texas.4 According to one Texas mental health official, “[w]e were presented with many barriers by the American Red Cross, who would not let our outreach and peer support folks into the shelters.”5 Some American Red Cross shelters excluded or evicted people with psychiatric disabilities, and other shelters refused to allow people with psychiatric disabilities to reenter the shelters after leaving for medical appointments. Some people with psychiatric disabilities were transferred to other states, where they lacked support systems and were separated from family members; these same people were inappropriately institutionalized, and some were discharged but lacked transportation to return home and became homeless in a strange city. Disaster relief services were inaccessible to people with disabilities, because emergency managers failed to include people with disabilities in the planning process. For people with psychiatric disabilities, the consequences were devastating, and sometimes deadly.
Although national media attention on the Gulf Coast reconstruction efforts has waned, the problems for people with disabilities persist. For example, many mental health clients still do not have access to critical medication.6 Since Katrina, all of the mental health facilities in New Orleans have closed down and only two hospitals remain but they only accept insured patients.7 In Alabama, FEMA evicted a New Orleans woman with severe emotional and medical disabilities from her temporary housing; she died a few days later.8 Due to the lack of mental health facilities and personnel (only eleven percent of New Orleans psychiatrists remain in the city), untrained and ill-equipped police officers have become the city’s first responders to residents with emotional needs.9 A New Orleans police official called the situation “a lose-lose for everybody.”10
Many current Gulf Coast mental health clients developed psychiatric disabilities as a consequence of the devastation and mismanaged relief efforts. Many Gulf Coast residents have developed post-traumatic stress disorder and depression.11 Officials believe that the problem is likely to worsen, because post-traumatic stress disorder often takes months or years to emerge.12 The New Orleans police department reported that in the months following Katrina, the city’s suicide rate was nine times the national average. As the first anniversary of Hurricanes Katrina and Rita approaches, it is likely that hurricane survivors and first responders will experience increased anxiety levels, trauma, grief, and post-traumatic stress disorder. Scattered amidst the devastation are shining stories of heroism, resilience, and care which provide valuable lessons for future disaster relief and recovery efforts. There were individual heroes, such as first responders and caregivers who stayed with their clients, and groups of heroes, including neighbors and churches in local communities who organized spontaneously to help the displaced people who poured into their towns. Additionally, people with psychiatric disabilities banded together to support each other and provide help to others. From these inspiring stories, NCD has learned that ongoing, permanent, local plans and programs are essential to effective disaster relief and recovery. These stories also underscore the need to involve people with psychiatric disabilities in developing plans and programs for disaster relief and recovery.
II. THE PRE-HURRICANE PSYCHIATRIC DISABILITY POPULATION IN THE GULF COAST REGION
People who had psychiatric disabilities prior to Hurricanes Katrina and Rita were not a niche population in the hurricane-hit regions. Less than three months before hurricane Katrina, the Report on the State of the Mental Health Delivery System in Louisiana identified one in five individuals in Louisiana as experiencing a “diagnosable mental disorder” in any given year—650,000 adults and 245,000 children.13 In 2004, Louisiana admitted 4,550 people to state-operated acute psychiatric units. 14According to the 2000 Census, 23.2 percent of New Orleans residents had some type of physical or mental disability.15 Almost 65,000 people in the greater New Orleans metropolitan area were identified as having a “mental disability.16 Most people served by the Louisiana mental health system who were affected by the hurricanes were poor people from diverse cultural groups, predominantly African-American. In Alabama, the Department of Mental Health and Mental Retardation served 102,000 people prior to the hurricane, including residents of a small psychiatric institution and a large community mental health center in Mobile who were evacuated. Census data for one hard-hit Mississippi county identified 27.2 percent of the population as “disabled.”17 Hurricanes Katrina and Rita significantly added to the population of people with psychiatric disabilities in the Gulf Coast region, including first responders. There will be an increased demand for mental health services in the upcoming hurricane season.
People who are dependent on public mental health system services, many of which have been certified as having disabilities by the Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) programs, often have been ignored in articles, reports and surveys that might be expected to include them. Articles about mental health issues as a result of the hurricanes tend to focus on people with no prior psychiatric history whose reaction to the disasters has been manifested by withdrawal, nightmares, and suicide. Reports about evacuation and disaster planning for people with special needs have focused on the elderly, nursing home populations, general hospital patients, and people with physical disabilities.18 Additionally, researchers have not yet thoroughly examined the effects of the hurricane on children previously diagnosed with mental illnesses and emotional or psychiatric disabilities; rather, most reports have focused on the psychiatric toll of the hurricanes on children who did not previously have psychiatric disabilities. As we prepare and set policy for future disasters, it is important to remember and plan for the population of people who developed psychiatric disabilities during and after Katrina, but we must not overlook challenges faced by hurricane survivors with pre-existing psychiatric disabilities.
Some people with psychiatric disabilities reacted with resilience and were a support to other evacuees even when their own homes were lost; others endured major psychiatric crises when faced with the loss of everything that had anchored them to a precarious existence, including (most importantly) the people they knew and trusted. The relief and rescue systems that were set up by federal and state governments and the American Red Cross were not designed to adequately serve people with pre-existing psychiatric disabilities. Fortunately, in at least some instances, neighbors, strangers, churches and small community groups stepped in to fill the rescue and relief vacuum left by government agencies.
III. MAJOR FINDINGS AND RECOMMENDATIONS
In the chaos and urgency caused by the hurricanes, it was difficult to keep track of people with psychiatric disabilities. Many clients of the mental health system and people who lived in group homes still have not been found. Government entities (such as the National Council on Disability and the Interagency Coordinating Council on Emergency Preparedness and Individuals with Disabilities) as well as private non-governmental organizations confirmed first-hand accounts of communication breakdowns, loss of housing and possessions, crowded shelters, forced resettling from one evacuation center to another, and discrimination. Hurricane evacuees and advocacy groups on the ground in New Orleans raised important issues with broad social policy implications regarding planning, evacuation, housing and medication. This section provides principles and policy guidance for emergency planners and decision makers. Also included are concrete examples of the application of these policy recommendations in specific circumstances. The law requires many of these policy recommendations – the Americans with Disabilities Act and Section 504 of the Rehabilitation Act.
A. In Violation of Federal Policy and Law, People with Psychiatric Disabilities were Discriminated Against During Evacuation, Rescue and Relief Phases.
Recommendation: The federal National Response Plan and state and local emergency plans should require that services and shelters are accessible to people with disabilities, including people with psychiatric disabilities (who live independently or in congregate living situations such as hospitals, group homes or assisted living), in compliance with the Americans with Disabilities Act and Section 504 of the Rehabilitation Act. Independent disability experts familiar with the state should review state plans.
The principles of nondiscrimination codified in law and federal policy should provide the framework for emergency planning and response for people with disabilities. Discriminatory planning and implementation can have deadly consequences for people with disabilities. When it came to planning for and providing services in a nondiscriminatory fashion to evacuees, “people with disabilities were footnotes.”19 For example, evacuees in American Red Cross shelters reported that essential medical services were positioned on upper floors of shelters and there was no elevator access. Following the principles embodied in these laws and other federal policies when planning for disaster relief and implementation is not only required, but it is also good policy.
Discrimination During Evacuation
People with disabilities were discriminated against during evacuation efforts. Some people with psychiatric disabilities had difficulty comprehending the evacuation messages and other essential communications and some were treated roughly because they could not follow the instructions. Marcie Roth of the National Spinal Cord Injury Association provided Congress with other examples of discrimination when she testified on the loss of human life due to the failure of paratransit services during the crisis.20
2. Discrimination in Emergency Shelters
People with psychiatric disabilities were often discriminated against within the emergency shelters. There is broad consensus among people with disabilities, advocates, professionals, first responders, and service providers that people with psychiatric disabilities encountered enormous problems with general shelters, especially those run by the American Red Cross. As one advocate reported: “calls to our [Alabama] State Governor’s Office on Disability reported about how people with psychiatric disabilities were not well served in shelters.”21 Shelters were crowded, noisy, chaotic, confusing, and sometimes violent, all inadequate circumstances for a person with psychosis, anxiety, or depression. Many smoking-dependent people with psychiatric disabilities were not allowed to reenter shelters when they left to smoke. Many ended up living right outside the shelters, and services were not provided to people living outside the shelters. Some shelters “dumped” difficult evacuees by sending them to jails, emergency rooms, nursing homes, or mental institutions.22 In other shelters, people with psychiatric disabilities huddled in corners behind physical barriers segregating them from the general population.23
Some areas established segregated “special needs” shelters to accommodate people with disabilities. At their peak, special needs shelters served about 9,600 people.24 Some of these special needs shelters served a useful function: they provided a central location for people with disabilities to have access to vital emergency services for people with disabilities. The special needs shelters received some evacuees with psychiatric disabilities who likely would have been shunted into institutions had the special needs shelters not existed. However, most special needs shelters were established specifically for people with medical and physical disabilities, not for people with psychiatric disabilities. As a result, when general shelters referred people with psychiatric disabilities to special needs shelters, those shelters did not have the necessary services to support them. In Texas, special needs shelter operators tried to get evacuees with psychiatric disabilities admitted to inpatient psychiatric beds because they felt the people with psychiatric disabilities “did not blend in well.”25
Sometimes, the mere existence of special needs shelters served as an excuse to discriminate against people with disabilities who sought access to general shelters. The American Red Cross adopted a policy of rejecting people with obvious disabilities. Because of this policy, American Red Cross personnel sometimes referred people with disabilities to special needs shelters but other times, rejecting access to a shelter resulted in evacuees with disabilities living in the streets. People with disabilities who are able to live independently in their communities should not be segregated during an emergency. Rather, general shelters should adhere to federal policies and laws that prohibit discrimination based on disability, and require accommodations for people with disabilities to enjoy equal access to the life-saving services provided in general shelters.
3. Discrimination in the Administration of Relief Services
The federal Interagency Coordinating Council on Emergency Preparedness and Individuals with Disabilities (ICC) recommended that Homeland Security funding be used to ensure that all aspects of emergency preparedness, response, and recovery promote the full integration of people with disabilities.26 Despite this nondiscrimination policy recommendation, Homeland Security funds still paid for inaccessible emergency services. For example, many people with psychiatric disabilities could not navigate FEMA relief and housing applications without assistance. Advocates who could have assisted with the applications were denied access to some shelters in Louisiana and Texas (in Mississippi, local American Red Cross volunteers contacted advocates to help fill out the applications). According to “Jenny,” a hurricane survivor and mental health consumer, she was wrongfully denied FEMA housing because FEMA was concerned with her psychiatric disabilities. As a result, Jenny spent months in an institution, despite evaluations by mental health professionals who concluded that she was perfectly able to live in FEMA housing.27 FEMA’s decision also conflicted with the nondiscrimination policy articulated in the President’s New Freedom Initiative, which promises to “break down barriers to equality” facing people with disabilities.28
Another example of discrimination was FEMA’s refusal to reimburse crisis counseling costs for many people with pre-existing psychiatric disabilities because FEMA officials said that they consider the treatment to be “continuing” mental health treatment.29 FEMA representatives also reportedly told people from group homes that they were ineligible for reimbursement for shelter, temporary housing, or other kinds of services. “Group homes and other entities had problems at first getting the feds to understand their issues and eligibility.”30 Individuals with psychiatric disabilities who had lived independently before the hurricanes hit were deemed ineligible for housing assistance (such as trailers) because untrained FEMA employees made uninformed assessments of their disabilities. FEMA reportedly deemed one woman ineligible for housing because, after living through the terror of post-Katrina chaos, she slept with a knife under her pillow for protection. In New Orleans, emergency departments were turning away people with psychiatric disabilities as late as May 2006 and there were no services to which they could be referred.31
Policymakers and emergency planners must incorporate the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act into their planning in order to provide nondiscriminatory relief services. Disparate treatment of people with psychiatric disabilities is discriminatory, unlawful, and hurtful. The ADA and Section 504 provide that when a public entity or an entity receiving federal funds provides services, including disaster services, people with disabilities should not be excluded from those services on the basis of their disabilities, as happened to some people with psychiatric disabilities. These laws require that providers of public services make reasonable accommodations to their facilities or services when necessary, unless those modifications would “fundamentally alter” the disaster relief program at issue. Finally, these laws permit the provision of different or separate aids, benefits, and services, if that is what is necessary to provide individuals with disabilities with services that are as effective as those received by people without disabilities. However, an individual with a disability cannot be forced to accept those separate services.
The ADA and Section 504 apply to every vital aspect of disaster relief, including evacuation plans, emergency communication, transportation, medical care, shelters, temporary housing and recovery efforts. Daniel Sutherland, head of the Office of Civil Rights and Civil Liberties for the Department of Homeland Security, stated that “[i]t is a violation of basic principles of human freedom for people who want to live on their own, independently, to be forced to live in institutional settings.”32 Disaster relief is not an exception to this rule. Policymakers should remedy the lack of adequate funding streams, fiscal incentives, and rigorous enforcement of federal legal requirements that are necessary to provide nondiscriminatory disaster services.
B. Mismanaged Evacuations Resulted in the Loss, Mistreatment, and Inappropriate Institutionalization of People with Psychiatric Disabilities
Recommendation: Evacuation planners should have a plan that (a) tracks the transfer of residents of group homes and psychiatric facilities, (b) maintains contact between people with psychiatric disabilities and their family members and caretakers, (c) helps facilitate the return of evacuees to their homes, (d) ensures that sites that receive evacuees are equipped to meet the needs of people with psychiatric disabilities, and (e) prevents the inappropriate institutionalization of evacuees with psychiatric disabilities.
People with psychiatric disabilities were evacuated to a variety of settings, including state emergency departments, general shelters, nursing homes, “special needs” shelters, churches, homes of compassionate strangers, jails, and psychiatric institutions. In many cases, the choice of setting depended on decisions by first responders who had no training in disability issues and who did not have access to information that would have helped them work with people with disabilities.
1. Residents of Group Homes and Psychiatric Facilities Were Lost During Evacuations, and Many Still Have Not or Cannot Return Home
While some state psychiatric facilities and group homes successfully evacuated in an orderly and timely manner, officials did not have prearranged destinations for the evacuees. As a result, family members were unable to find loved ones who had been evacuated from state facilities. “People were just sent all over the place,” said Jennifer Jantz, executive director of the Louisiana chapter of the National Alliance for the Mentally Ill. “Nobody is sure where everybody is. We got calls, people looking for loved ones. People didn’t know where group homes were evacuated to. We’re still getting those calls.”33 To exacerbate problems, Medicaid will be sending thousands of notices that eligibility to receive Medicaid services in a state other than the state of origin is about to expire. Most of these notices will never be received, and therefore the time period to appeal will expire.
There are many examples of the displacement of people with psychiatric disabilities. One bus with group home members and staff went to Tuscaloosa, Alabama, because one of the directors had a brother in Tuscaloosa. That is how Tuscaloosa ended up providing services to sixty-five people for over three months. Because destinations were not determined in advance, it has been difficult to track down evacuees. According to one mental health advocate, nine out of ten residents at a group home in Mississippi still cannot be found.34 Many people are still unaccounted for because no system existed to coordinate and track people as they were moved from shelters to state parks to churches. When asked “what happened to people with psychiatric disabilities who lost their homes,” the answer from many mental health professionals is “we don’t know.”35 For example, one government official encountered an encampment of twenty people with psychiatric disabilities in Purlington, Mississippi. They had banded together and lived in small tents. The Salvation Army provided them with food. The official found the band of people on the day that Hurricane Rita was expected to hit, and sent help to transport them out.36 Whether they survived Rita, and where they are today, remains unknown.
Residents of psychiatric facilities and clients of the state mental health system in Mississippi as well as several other surrounding areas were evacuated to places throughout the United States, sometimes thousands of miles from their homes. Many people with pre-existing psychiatric disabilities were surviving on meager assisted-incomes prior to the hurricanes and cannot return to cities where rental prices have tripled.37 Others are concerned that essential services and supports have not been reestablished. After months of unnecessary hospitalization, some evacuees are just now returning to their home states. Others who were “temporarily” institutionalized have not yet been discharged.
Some people who evacuated from Louisiana have not yet returned home because necessary support services and structures have not yet been re-established. Advocates in Louisiana observed that the Louisiana state mental health system was disorganized and uncoordinated before Hurricane Katrina. One advocate said, “I don’t really have a handle yet on the extent to which the hurricane harmed the system and the extent to which the system was broken and in turmoil anyway before the hurricane.”38 In fact, less than three months before Hurricane Katrina, a report by the Secretary of the Louisiana Department of Health and Hospitals noted that Louisiana’s mental health system was inadequate, fragmented, and suffered from a lack of appropriately trained professionals.39 Today, only a fraction of that inadequate system in New Orleans remains, and the rest of the Louisiana mental health system is strained beyond capacity. To facilitate the return to their homes, evacuees with psychiatric disabilities should be advised on the level of supports and services that have been re-established in their home communities so that they can make informed decisions. Governments should strive to re-establish those services quickly, so people with psychiatric disabilities can finally return home.
2. Evacuation Locations Were Not Prepared To Meet the Medical and Mental Health Needs of People With Psychiatric Disabilities
Many destination facilities were ill prepared to receive evacuees. One state psychiatric facility in Louisiana was not notified that evacuees were coming to them until buses arrived and thirty people got out. Currently under-equipped facilities continue to service evacuees, nearly a year later. “Between two and three hundred” people from Louisiana are now part of the mental health system in Alabama, according to Anne Evans, Executive Assistant to the Commissioner of the Alabama Department of Mental Health and Mental Retardation.40 According to Cindy Hopkins of the Texas Department of State Health Services, 250,000 evacuees remain of the 600,000 who arrived in Texas almost a year ago.41
Evacuees with psychiatric disabilities experienced different treatment based on the location to which they were evacuated. “Evacuation” can mean self-evacuating from a home or apartment to a shelter in New Orleans, or it can mean being sent from a New Orleans shelter across the country to places such as Massachusetts or South Dakota. People who were evacuated to rural Mississippi and Alabama often had very few medical and mental health services because the systems were strained before the evacuees arrived. One Mississippi advocate reported that American Red Cross shelters were only opened in urban areas, not rural areas, in Mississippi.42 Wind Creek State Park in Alabama initially served four to five hundred evacuees; most were impoverished people from the Ninth Ward in New Orleans.43 At least thirty of the evacuees had urgent mental health needs, including people with autism, bipolar disorders and schizophrenia. Some of the evacuees were rape victims who required trauma treatment. The county mental health region in which Wind Creek Park is located had one psychiatrist prior to Hurricane Katrina. When the evacuees started streaming into the park, there was one nurse for four hundred people.44
Evacuation locations often lacked psychiatric support, treatment services and medications. Many people who arrived at shelters did not have medications. Some people did not know what medications they were taking nor did they remember the dosage level. People who brought medications with them consumed far less than the prescribed dosage in an attempt to make them last as long as possible. When medical assistance was provided, people sometimes had to choose. One woman recounted that the host state’s Medicaid program would only cover three of her usual eight prescriptions. It is critical for people’s health and safety that they be allowed to remain on medications they were taking prior to the hurricane. Nearly all interviewees for this paper expressed that they had difficulties obtaining medication during the disaster. For some people with psychiatric disabilities, this remains one of their chief concerns for the next hurricane season. There have been recent discussions at the federal level as to whether psychotropic medications should be added to the CDC’s Medication Stockpile.45 People with psychiatric disabilities should be involved in those discussions.
Some doctors and health professionals reportedly declined to serve people with psychiatric disabilities because they were unfamiliar with the evacuees’ mental health and medical histories and were therefore concerned that they might be held liable for erroneous treatments or prescriptions. The American Psychiatric Association’s Disaster Psychiatry Handbook contains an entire chapter on ‘Medicolegal and Ethical Issues in Disaster Psychiatry,’ which warns prospective volunteers not to underestimate the chances of litigation, or rely on “Good Samaritan” statutes to protect them.46 These issues need to be discussed by emergency planners at the federal, state and local levels with the inclusion of people with psychiatric disabilities.
3. Many People with Psychiatric Disabilities Were Inappropriately Institutionalized
Some people with psychiatric disabilities were sent to state psychiatric institutions or jails when all they needed was a medication refill. People were moved for a variety of reasons from one setting to another, with little or no notice or explanation. A recurring theme was that people with psychiatric disabilities were placed in nursing homes and institutions, not because they required that level of care, but because there was nowhere else for them to go,47 or because they needed medications that the shelters did not have. At least one person in Alabama was unnecessarily hospitalized because FEMA would not permit her to remain in FEMA housing due to concerns about her psychiatric disability – concerns that were unfounded, according to the mental health professionals who evaluated her.48 In Mississippi, some evacuees with psychiatric disabilities were sent to the state hospital, which served as an evacuation site. One individual was able to get out of the state hospital because his sister came to get him.49 Some people who had previously lived in the community were “evacuated” to Texas state psychiatric hospitals, where they remained for many months after Hurricane Katrina.50 Advocacy Inc, the Texas Protection and Advocacy agency, made a concerted effort to identify, locate and advocate for the discharge of Texas evacuees.51 Other evacuees with psychiatric disabilities were arrested and jailed in the wake of the hurricane, sometimes dragged out of shelters and other times removed from the streets. However, both Alabama and Texas were able to serve most evacuees with psychiatric disabilities in shelters and transition them to community settings (although a few were sent to state hospitals), demonstrating that it is possible to evacuate people with psychiatric disabilities without institutionalizing them.
Some of the unnecessary transfers to institutions were the results of reception center triage by individuals with no training, experience, or assistance in identifying or treating people with psychiatric disabilities. Substance Abuse and Mental Health Services Administration (SAMHSA) is preparing a toolkit for first responders, which includes an assessment tool to appropriately identify the level of care and needs of people with various disabilities. The assessment tool comes in two parts: a brief set of questions for reception center triage, and a longer set of questions for shelter providers, to ensure that people are not inappropriately hospitalized, and that shelter services provided or contracted for by states are, as required by law, provided in the “most integrated setting appropriate to the needs” of individuals with disabilities.52 The toolkit is said to be available soon, 53 and NCD urges its release and widespread distribution to first responders and shelter managers as soon as possible. When evacuation plans do call for psychiatric hospitalization, emergency planners should follow a process such as the inpatient referral system established by the Texas Department of State Health Services. Evacuees with psychiatric disabilities who were referred for inpatient psychiatric hospitalization were evaluated by the Office of the Medical Director for Behavioral Health of the Department of State Health Services on a 24-hour a day basis. The office also monitored utilization daily and kept an active census board that tracked admissions of hurricane evacuees. Every involuntary admission was screened in person by the local mental health authority prior to commitment. As a result of this rigorous program, fewer than seventy people were admitted out of more than 600 who were presented for admission.54
C. People with Psychiatric Disabilities Were Not Included in Disaster Planning or Relief and Recovery Efforts
Recommendation: People with psychiatric disabilities must be involved at every stage of disaster and evacuation planning and with the administration of relief and recovery efforts.
Evacuations of people with psychiatric disabilities often failed because emergency planners did not include people with psychiatric disabilities in the planning process. Inclusion of consumers of mental health services in disaster planning andin providing peer services during disasters makes sense and saves lives. Despite the creation of an Interagency Coordinating Council on Emergency Preparedness and Individuals with Disabilities (ICC) few people with disabilities –and even fewer with psychiatric disabilities– sit on planning committees at the federal, state or local levels. Although the Federal Government has provided some funds to organizations for people with physical and sensory disabilities – to prepare model emergency preparedness community education programs55 – the government has not included people with psychiatric disabilities to the same degree in planning for future emergencies or in relief and recovery efforts.
However, some cities and counties fared well in their efforts to evacuate people with disabilities. In Houston, for example, a local coalition included people from local, state, and federal government entities, non-governmental organizations, and faith-based initiatives. The coalition had a corps of trained volunteers ready to respond to disasters. The coalition reached out to the disability community, received input from disability-related agencies and planned to provide a wide range of services needed for people with disabilities, including people with psychiatric disabilities. “Developing and working a [disaster] plan requires complete communication, coordination, cooperation, and even friendships between emergency managers and professionals in all levels of government.”56 Another trait of the Houston plan was its flexibility to accommodate changing needs; Houston successfully modified its initial plan for 2,000 evacuees to include more than 23,750.57 While there is no direct evidence that the Harris County/Houston coalition specifically included people with psychiatric disabilities, the coalition’s inclusion of people with disabilities is a step in the right direction. Other communities would do well to emulate the efforts of the Houston coalition to incorporate people with disabilities at the highest levels of emergency response planning.
People with psychiatric disabilities were not included in most relief and recovery efforts. For example, people with psychiatric disabilities could work as peer advocates in the aftermath of a disaster such as Hurricanes Katrina and Rita. While there have been many calls for greater screening, diagnostic and professional treatment capacity after natural disasters, peer support also can play a crucial role. Peer advocates are generally local people, who are more familiar with the culture of individuals with psychiatric disabilities than are professionals who have volunteered from other states. Dr. Daniel Fisher, a member of the New Freedom Mental Health Commission and a psychiatrist, worked with Meaningful Minds, a Louisiana-based group of mental health consumers, to assist in peer advocacy efforts. A consumer-led recovery effort also began in Texas when mental health consumers from the Mental Health Association in Southeastern Pennsylvania held peer support trainings for consumers of mental health services, using a curriculum developed in collaboration with the University of Pennsylvania to promote recovery after community disasters.58 Participants of these kinds of consumer efforts report extremely positive results, despite under-funding. The federal Substance Abuse and Mental Health Services Administration (SAMHSA) provided some funding for peer advocacy training initiatives. Government agencies should investigate the possible expansion of programs to train and deploy peer advocates after disasters.
People with psychiatric disabilities need to be involved in evacuation planning, including the development of protocols for police assistance in evacuating people with psychiatric disabilities. Uniformed police officers often were not trained to work with people with psychiatric disabilities, and as a result, many evacuees with psychiatric disabilities had negative evacuation experiences with the police. Additionally, many people with psychiatric disabilities previously had negative experiences where uniformed officers arrived at their doorsteps to forcibly remove them from their homes to institutions. The experience of police officers arriving at their homes during Katrina and Rita carried a particular resonance for people involved with the mental health system. Evacuees with disabilities had a difficult time conveying the trauma caused by the unexpected arrival of uniformed officers who ordered them out of their homes and sometimes forcibly removed them. Even after people were evacuated, people with psychiatric disabilities continued to misunderstand the meaning of police uniforms. Because of the negative connotations associated with police uniforms, a number of people with psychiatric disabilities in Austin shelters avoided the police department victim services staff assigned to provide counseling and assistance to people with disabilities.59 Police assigned to these duties should be trained to work with people with psychiatric disabilities, such as the training provided by the Crisis Intervention Team (CIT) program pioneered in Memphis, Tennessee to teach police officers how to interact with people with psychiatric disabilities.60
D. Disaster Management Efforts Often Failed Because No Individual or Office Had Responsibility, Accountability, and Authority for Disability Related Issues
Recommendation: A single person or office must be responsible, accountable and able to make decisions related to disability issues.
As in previous disasters, there was a lack of coordination and communication, not only between levels of government, or between different agencies at the same level of government, but between people at different levels in the same agency. Hurricane evacuees and first responders reported that they received contradictory and conflicting messages from upper management in FEMA and the American Red Cross regarding disability issues. Many local, state and federal government officials did not have a clear organizational hierarchy that included a designated official for disability issues. One disability advocate recalled, “When I asked [who had ownership of disability issues] in the state I was assessing, no one raised their hand. I asked five different logistical places, and no one claimed ownership of disability-related issues for the state... anything coordinated out to the state levels was fragmented, not standardized, not coordinated across the board.”61
With the 2006 hurricane season now underway, it is unclear whether state and local governments have designated an emergency management official with stewardship over disability issues. For example, although the city of New Orleans now provides an Emergency Guide for Citizens with Disabilities, the plan only provides information on personal disaster preparation but does not include information on how the city will provide for the emergency needs of people with disabilities.62 The guide instructs people with disabilities to contact the mayor’s office with any questions. However, the “mayor’s office” is the official contact point for all emergency-related questions and it is unlikely that the office has the resources to successfully respond to disability issues during an emergency. The New Orleans web site contains no further information for the special needs of the disability population, including people with psychiatric disabilities.63 Public entities should designate a single official for disability-related emergency issues, and provide contact information to the public for that individual on government websites and at government facilities.
E. Disaster Plans Were Shortsighted and Relief and Recovery Services Were Terminated Prematurely
Recommendation: Relief and recovery efforts should continue for at least two years from the date of the disaster, including Medicaid and HUD housing waivers and FEMA housing for people with disabilities.
Accumulated experience from other highly traumatic events – such as September 11 and the Oklahoma City bombing – indicates that suffering and symptoms related to traumatic events often emerge years later.64 Patrick Libbey, executive director of the National Association of County and City Health Officials observed, “We may need to rethink what we mean by the terms ‘temporary’ and ‘interim.’” Just as policymakers should make long-term plans for disaster survivors’ physical needs, such as housing and employment, so should policymakers plan for long-term psychiatric needs. This is particularly true for people with psychiatric disabilities, for whom mental health services were stretched thin in the Gulf States prior to Katrina and have not yet been restored in many areas of New Orleans. The collapse of mental health services in New Orleans has impacted the entire state as other hospitals in Louisiana have tried to absorb some of the overflow. At least half of the psychiatric patients that Louisiana hospitals treat are uninsured. Alabama and Mississippi state mental health systems are still serving Katrina evacuees, and while they have been coping with the influx, serving yet another wave of evacuees will put strained systems at risk of collapse.
Social service systems were not prepared to manage mental health care demands of evacuees. “No one ever planned for ‘what happens when your social service infrastructure is completely wiped out.’”65 The Federal Government and other states sent volunteer mental health clinicians to hurricane-affected areas where they served for two to three week stints. Additionally, it was not uncommon for those volunteers to develop psychiatric disabilities of their own, such as depression or post-traumatic stress disorder.66 Although residents are deeply grateful for any assistance, the lack of continuity in the provision of mental health services impairs long-term recovery.
Government disaster relief timetables were shortsighted and these timetables compounded the difficulty of long-term recovery for people with disabilities. For example, FEMA began to evict people from temporary housing in March of 2006 but many hurricane survivors cannot return to their homes because mental health services have not yet been restored. Another example of shortsightedness is that Alabama’s Katrina-related Medicaid waiver is set to expire in June 2006, during the next hurricane season. FEMA’s “long-term” crisis counseling programs expire after nine months, but mental health experts predict major eruptions of post-traumatic stress disorder on the one-year anniversary of the disaster.
IV. RECOMMENDATIONS FOR SPECIFIC BRANCHES OF GOVERNMENT AND FOR THE AMERICAN RED CROSS
This section provides individualized recommendations for different entities. These recommendations are derived from the findings and broad recommendations articulated in the previous section.
A. The United States Congress
Congress can help ensure that federal services are delivered in a non-discriminatory fashion to people with psychiatric disabilities. Some of the changes that Congress should make include:
1. Medicaid Amendments
Amend the Medicaid program to require all states to provide specified Medicaid services to Katrina survivors with disabilities, with a presumption of income eligibility, through the start of fiscal year 2008. Covered services should include psychotherapy, rehabilitative services and other effective treatments, administered by psychiatrists, psychologists, and social workers, for conditions exacerbated by or resulting from the hurricane.
2. FEMA Amendments
Congress should amend the Robert T. Stafford Disaster Relief and Emergency Assistance Act of 1974 to permit crisis counseling and other FEMA services to people with pre-existing psychiatric disabilities, until state service systems have been restored. Congress should also clarify that crisis counseling can be provided through trained peer services, similar to the peer services provided after the Oklahoma City bombing.
3. New Legislation
Congress should pass uniform “Good Samaritan” legislation applicable for a limited and specified period of time in areas where the President has declared a state of emergency. Some doctors, especially those from out of state, were hesitant to volunteer or provide treatment in shelters because of fears of liability associated with treating strangers without having access to medical records. Although many states have “Good Samaritan” laws, which permit doctors to provide treatment to unknown individuals in certain medical emergencies (e.g. roadside emergency treatment of a car wreck victim, or treating a person who has a heart attack on an airplane), it is not clear that those statutes apply to the treatment of large numbers of people who are conscious and capable of informed consent. In addition, Good Samaritan laws vary widely from state to state and it is impractical in the immediate aftermath of a disaster to predict which state law will apply and to what extent.67 Congress should act to clarify the scope of existing Good Samaritan laws during mass disasters.
4. Federal funding and reimbursement for disaster related assistance contingent on compliance with the ADA and Section 504
Congress should instruct the Department of Homeland Security to withhold federal reimbursement to agencies and the American Red Cross if evacuation plans and shelter are not accessible for people with disabilities, including psychiatric disabilities. Congress should make clear that evacuation plans and shelters must meet the needs of all citizens, and that plans or shelters that do not provide for the needs of people with visual, auditory, mobility, cognitive and psychiatric disabilities, or are inaccessible to them, will not be funded.
5. Research, Report and Data Collections
Congress should ensure that research projects, reports, and data collection activities related to emergency preparedness and implementation of relief plans include information about people with psychiatric disabilities, especially clients of state mental health systems. Five months before Hurricane Katrina, the National Council on Disability issued a prescient report Saving Lives: Including People with Disabilities in Emergency Planning. In that paper, NCD pointed to the “scarce research on experiences of people with disabilities and activity limitations in disaster activities that include planning, mitigation, preparedness, response and recovery.” The Executive Branch, Congress and several independent groups have issued reports about Hurricane Katrina, but there are very few references to people who had psychiatric disabilities before the hurricane.68
B. The Executive Branch of the United States
1. The Department of Homeland Security – FEMA
FEMA regulations and policies should ensure that:
applications for housing and assistance can be completed by people with disabilities, as required by federal law.
applications and intake procedures for housing and assistance include questions that help identify the needs of people with disabilities.
people from group homes or supported housing are eligible for FEMA services.
people with psychiatric disabilities are not excluded from FEMA housing or trailers without an appropriate evaluation by a licensed mental health professional.
a system exists for people to seek accommodations or waivers of FEMA regulation on the basis of disability; the system should be communicated to recipients of FEMA assistance.
partnerships are established with protection and advocacy agencies and other disability advocacy groups.
the National Disaster Medical System is more attuned to issues related to the large percentage of evacuees with disabilities, including psychiatric disabilities.
trained, certified peer advocates are included among the groups of people permitted to provide crisis counseling under the Crisis Counseling Assistance and Training Program.
2. The Department of Homeland Security - Office of Civil Rights and Civil Liberties
The Office of Civil Rights and Civil Liberties of the Department of Homeland Security should work closely with the Department of Justice to ensure that state disaster relief plans meet the requirements of the Americans with Disabilities Act and Section 504 of the Rehabilitation Act, and should provide technical assistance to states, their disaster relief agencies, and non-profit organizations to ensure that disaster relief efforts are successful.
3. The Department of Health and Human Services – The Centers for Disease Control and Prevention (CDC)
The CDC should include people with psychiatric disabilities in discussions about whether to include psychotropic medications in the national medical stockpile, and in discussions about agreements with pharmaceutical companies to develop a rapid purchase and distribution plan in federal emergencies.
4. The Department of Health and Human Services – Substance Abuse and Mental Health Services Administration (SAMHSA)
SAMHSA should sponsor research and data collection to bolster empirical knowledge about the effects of disasters on clients of state mental health systems.
SAMHSA should ensure that disaster reports include information and statistics about clients of state mental health systems.
SAMHSA should finish developing its mental health toolkit for first responders, and rapidly disseminate the toolkit.
SAMHSA should familiarize clinicians with concepts of recovery and trauma and how these concepts apply in different cultures.
SAMHSA should encourage states to include representatives of peer groups in disaster planning, relief and recovery efforts.
SAMHSA should work closely with local mental health agencies and local consumer organizations in disaster planning.
C. The Legislative Branch of State Governments
State Legislatures should examine creative means to encourage health professionals to provide voluntary treatment during emergencies; this could include plans to decrease potential legal liability during disasters, such as Good Samaritan laws.
Ensure that existing Good Samaritan laws indemnify volunteer medical providers during a period of natural disaster or terrorist attack.
Ensure that there is one “point of contact” person or office responsible for disaster relief planning and disbursement of funds who is responsible and accountable for disability issues, and one information number that is accessible to people with disabilities.
Ensure that the state has a Crisis Counseling Assistance and Training Program grant filled out to the extent possible, that it applies for federal crisis counseling funds in a timely fashion, and that trained, certified peer advocates are included among those who can provide crisis counseling under the program.
D. The Executive Branch of State Governments
The State Attorney General’s Office should issue an opinion on the applicability of the state’s Good Samaritan law to volunteer medical services in an emergency.
The Executive Branch should assign an individual or an office with the primary responsibility for disability issues in emergency planning and relief.
The Executive Branch should ensure that people with psychiatric disabilities are included in mock disaster drills and trainings.
The Executive Branch should establish pick-up points for evacuees to be taken to shelters; the location of those pick-up points should be communicated to the public in advance.
The Executive Branch should establish and publicize a voluntary state-wide registry for people with special needs. The self-registry could include: contact information, name of an emergency contact for the individual and information on medical needs.
The Executive Branch should develop and implement programs to ensure that first responders can meet the needs of people with psychiatric disabilities. For example, the Executive Branch could investigate the possibility of providing wristbands with medication names and dosages for people with psychiatric disabilities who cannot administer their own medications; first responders could use the information to provide medical support. Another possible resource to train first responders is the toolkit currently being created by SAMHSA.
E. The American Red Cross
The American Red Cross should train employees and volunteers to work with people with psychiatric disabilities and emotional disabilities. The training should include proper shelter intake procedures to help identify evacuees’ needs.
V. CONCLUSION
As NCD predicted in its April 2005 report, Saving Lives: Including People with Disabilities in Disaster Planning, “[i]f planning does not embrace the value that everyone should survive, they will not.”69 As a result of its research, NCD found that much pre-Katrina disaster planning did not contemplate the needs of people with psychiatric disabilities, and as a result, many people died or unnecessarily suffered severely traumatic experiences. However, NCD was pleased to discover some examples of successful evacuation and relief for people with disabilities, such as Houston’s local coalition that included people with disabilities in emergency planning. Hurricane survivors with psychiatric disabilities expressed their sincere gratitude to compassionate Americans who labored diligently to help them in their hour of need. Policymakers and emergency planners should learn from the failures and successes articulated in this report. Because the Federal Government has yet to fully examine the needs of people with psychiatric disabilities during natural or man-made disasters, much of the information and recommendations of this report are new and broad in scope. However, the themes are familiar. Many of these findings and recommendations align with NCD’s 2005 Saving Lives report, available on the web at http://www.ncd.gov/newsroom/publications/2005/saving_lives.htm. NCD encourages policymakers, emergency planners and people with disabilities to carefully review that report. NCD stands ready to provide guidance to those who are ready to make their emergency plans and services more accessible to people with disabilities.
In conclusion, NCD wishes to highlight two key recommendations from this report and from the 2005 Saving Lives report. First, people with disabilities, including psychiatric disabilities, must be included in emergency planning and in relief efforts. Emergency management planners should not merely plan about people with disabilities; rather they must plan with people with disabilities. Second, emergency management planners at the local, state and federal levels must remember that federal laws and policies require that emergency services be administered in a nondiscriminatory fashion. The ADA and Section 504 require evacuation services and emergency shelters to be accessible to people with disabilities. Congress and the President should ensure that federal funds are used only for nondiscriminatory emergency services and relief and recovery efforts. As we plan to ensure that all people, regardless of disability, survive catastrophes such as Hurricanes Katrina and Rita, we will incorporate the principles of inclusion and nondiscrimination into our national consciousness.
The National Council on Disability (NCD) wishes to express its appreciation to Susan Stefan and Ann Marshall for drafting this report.
1Susan Saulny, A Legacy of the Storm: Depression and Suicide, The New York Times (June 21, 2006) http://www.nytimes.com/2006/06/21/us/21depress.html.
2 Based on interviews with mental health consumers and advocates.
3 Angela Browne, Mentally Disabled Hurricane Victims Find a Refuge in East Texas, Associated Press, Oct. 6, 2005, www.semissouian.com/story/1121017.html. Church camps and retreat centers were not eligible for FEMA reimbursement and were told to “work through local governments for reimbursement.” See FEMA reports paying $669 Million to Katrina victims, USAToday (September 11, 2005) http://www.usatoday.com/news/nation/2005-09-11-femaaid_x.htm.
4 Interview with Cindy Hopkins, Texas Department of State Health Services.
5 Id.
6 Ben Lemoine, Emotional Needs of Katrina Victims Not Being Met, WWLTV, May 19, 2006. http://www.wwltv.com/medical/stories/WWL051906tpemotional.4d59f5.html.
7 See Saulny, note 1.
8 Interview with Ann Marshall, a 30-year advocate for people with disabilities in Alabama and the nation.
9 See Lemoine, note 6.
10 Id.
11 See Saulny, note 7.
12 Brian DeBose, Katrina Trauma Besets the Big Easy, The Washington Times (May 1, 2006). http://www.washtimes.com/national/20060501-123001-9306r.htm.
13 Governor’s Health Care Reform Panel Meeting, Report on the State of the Mental Health Delivery System in Louisiana (June 30, 2005) Louisiana Department of Health and Hospitals.
14 Id.
15 See National Council on Disability on Hurricane Affected Areas, NCD (September 2, 2005). http://www.ncd.gov/newsroom/publications/2005/katrina2.htm.
16 Daniel W. Sutherland, Office of Civil Rights and Civil Liberties, Department of Homeland Security, and Chairman, Interagency Coordinating Council on Emergency Preparedness and Individuals with Disabilities, Remarks at National Hurricane Conference (April 14, 2006). http://www.disabilitypreparedness.gov/ds04_14_06.htm.
17 See EPI Press Conference regarding report on SNAKE teams’ assessment of Katrina response and Rescue efforts, National Organization on Disability (October 5, 2005).
18 GAO, Disaster Preparedness: Preliminary Observations on the Evacuation of Hospitals and Nursing Homes Due to Hurricanes, GAO-06-443R (Feb. 16, 2006). A notable exception was the letter from the Campaign for Mental Health Reform to members of Congress, sent September 14, 2005, which focused on both trauma reactions of displaced persons and “the hundreds of thousands of Gulf Coast Americans with serious mental illnesses pre-dating the hurricane.”
19 Interview with Jim Downing, Employment and Training Administration.
20 Marcie Roth, Testimony in Congressional Briefing Emergency Management and People with Disabilities: Before, During and After (November 10, 2005). http://www.ncd.gov/newsroom/publications/2005/transcript_emergencymgt.htm.
21 Marshall interview, note 8.
22 Based on interviews with Nell Hahn of Louisiana Protection and Advocacy; Beth Mitchell of Advocacy Inc., in Texas; and Ann Marshall, note 8.
23 Downing interview, note 19.
24 See EPI Press Conference regarding report on SNAKE teams’ assessment of Katrina response and Rescue efforts, National Organization on Disability (October 5, 2005). http://www.nod.org/Resources/PDFs/katrina_snake_briefing.doc.
25 Hopkins interview, note 4.
26 See Individuals with Disabilities in Emergency Preparedness: Executive Order 13347, Department of Homeland Security (July 2005) http://www.dhs.gov/interweb/assetlibrary/CRCL_IWDEP_AnnualReport_2005.pdf.
27 Interview with “Jenny”, consumer and hurricane survivor who lived in a FEMA trailer. Her name has been changed to protect her privacy.
28 George W. Bush, State of the Union (February 27, 2001). http://www.whitehouse.gov/news/releases/2001/02/20010228.html.
29 Based on interviews with Katrina-affected psychiatric survivors.
30 Marshall interview, note 8.
31 See LeMoine, note 6; see also Saulny, note 7.
32 Daniel W. Sutherland, Remarks at National Hurricane Conference, Department of Homeland Security (April 14, 2006) http://www.disabilitypreparedness.gov/ds04_14_06.htm.
33 Bruce Taylor Seeman, Hurricane Victims with Mental Problems Parted from Health Care, Newhouse News Service (September 16, 2005) www.newhousenews.com/archive/seeman091605.html.
34 Interview with Talatha Denison, Mental Health Advocate, Mississippi Protection and Advocacy.
35Interviews with Anne Evans, Executive Assistant to the Commissioner of the Alabama Department of Mental Health and Mental Retardation; and Jim Downing, note 19.
36 Downing interview, note 19.
37 Denison interview, note 34.
38 Hahn interview.
39Governor’s Health Care Reform Panel Meeting, Report on the State of the Mental Health Delivery System in Louisiana (June 30, 2005) Louisiana Department of Health and Hospitals.
40 Evans interview, note 35.
41Hopkins interview, note 4.
42Denison interview, note 34.
43Interview with “Sue,” an evacuee with psychiatric disabilities who came from New Orleans’ Ninth Ward. To protect her privacy, Sue’s name has been changed.
44Id.
45 This is a sensitive issue for people with psychiatric disabilities, who have not been invited to participate in the discussion whether to include psychotropic medications in the national stockpile. Mental health consumers agree that it was disastrous for people who were already taking these medications to not have access to them during the emergency. Emergency planners should plan for people who are on these medications to continue to have access to them during and after an emergency. However, mental health consumers also recognize that many of these medications require careful monitoring (e.g., blood levels for lithium and clozapine) or have known side effects that might be of concern in the aftermath of a disaster (potentially increased suicide rates for some SSRIs). In addition, in the confusion, chaos, and inevitable shortages of resources and expertise, many people with psychiatric disabilities, including those who rely on psychotropic medications themselves, worry that these drugs would be misused to maintain calm and order, muffle grief, and numb suffering; in other words, to assist responders rather than evacuees.
46Anand Pandya, “Medicolegal and Ethical Issues in Disaster Psychiatry,” American Psychiatric Association, Committee on Psychiatric Dimensions of Disaster, Disaster Psychiatry Handbook (last updated Nov. 2004).
47Denison interview, note 34.
48“Jenny” interview, note 27; Marshall interview, note 8.
49Denison interview, note 34.
50Mitchell interview, note 22.
51Id.
5228 C.F.R. 35.130(d)
53Interview with Eileen Elias, Deputy Director, Office on Disability, Department of Health and Human Services.
54Hopkins interview, note 4.
55Secretary Michael Chertoff, Remarks at the National Council on Disability Seminar on the Americans with Disabilities Act, Washington DC (July 26, 2005) www.dhs.gov/dhspublic/interapp/speech/speech_0257.xml.
56Robert A. Eckels, Testimony to the Senate Homeland Security and Governmental Affairs Committee hearing on “Recovering from Hurricane Katrina: Responding to the Needs of the Displaced, Today and Tomorrow” (September 28, 2005) http://hsqac.senate.gov/index.cfm?Fuseaction=Hearings.Details&HearinglD=273.
57Id.
58The manual is available at www.mhselfhelp.org/resources.
59Mitchell interview, note 22.
60See Crisis Intervention Team (CIT), Memphis Police Department, http://www.memphispolice.org/communit.htm.
61See EPI Press Conference regarding report on SNAKE teams’ assessment of Katrina response and Rescue efforts, National Organization on Disability (October 5, 2005) http://www.nod.org/Resources/PDFs/katrina_snake_briefing.doc.
62New Orleans Office of Emergency Preparedness Website, http://www.cityofno.com/Portals/Portal46/portal.aspx?portal_46&tabid=4.
63A search of the New Orleans Office of Emergency Preparedness web site using the search term “mental illness” returns the following results: “Web Pages: Health Department—Homeless Healthcare; Announcements: No Results Found; Events: No Results Found; Links: No Results Found; Documents: No Results Found; Services: No Results Found; News Stories: No Results Found.” Press releases are limited to announcements relating to missing persons. New Orleans Office of Emergency Preparedness 2006, http://www.cityofno.com/.
64Dr. Daniel Fisher, Director, National Empowerment Center
65Downing interview, note 19.
66Id.
67According to constitutional law scholar Erwin Chemerinsky, Congress could utilize the commerce clause to pass interstate Samaritan laws (personal communication).
68The best information came from a private report by the National Organization on Disability, called Report on Special Needs Assessment for Katrina Evacuees (SNAKE) Project (2006) http://www.nod.org/Resources/PDFs/katrina_snake_report.pdf.
69See Saving Lives: Including People with Disabilities in Emergency Planning, NCD (April 15, 2005) http://www.ncd.gov/newsroom/publications/2005/saving_lives.htm.