Obamacare & Supreme Court leave mentally ill uninsured

While some are condemning and others applauding the Supreme Court decision on health care reform, the decision leaves in place federally mandated discrimination against people with mental illness. As I pointed out with Mary Zdanowicz in this Washington Post op-ed

For the most severely mentally ill, private insurance is essentially meaningless. Because of their illnesses, most are indigent, and private insurance is a luxury they cannot afford....Medicaid...covers their care, except for a single exception--inpatient care in psychiatric hospitals. The federal government's Institution for Mental Diseases (IMD) exclusion prohibits Medicaid from reimbursing for most individuals who need care in a psychiatric hospital. If you have a disease in your heart, liver or any other organ and need treatment in a hospital, Medicaid contributes. But if you have a disease in your brain and need care in a psychiatric hospital, Medicaid does not.

The ruling by the Supreme Court does not change this. States will continue to declare mentally ill who are hospitalized 'well', and discharge them sicker and quicker into the community while pretending that is humane care. As a result of this, many people with serious mental illness will go shelters, others to jails and prisons, and too many to morgues.

Health Care reform that leaves out the most seriously mentally ill is a national shame.

Assemblyman Felix Ortiz puts police, public and mentally ill at risk

A version of this appeared in NY Daily News on April 18.

Yesterday, the mother of Terrence Hale called New York’s Finest about her mentally ill son who was off medicine and acting out. When Officer Eder Loor arrived to help, Mr. Hale stabbed him. Earlier this month, Easter Sunday, Benedy Abreu’s mother called police about her mentally ill son, who was also off medications and barricaded in the apartment. When officers William Fair and Phillip White of the 50th precinct knocked on the door, Mr. Abreu opened it and lunged at them with a knife stabbing both.

Why are so many people with serious mental illness being allowed to deteriorate and become violent, putting themselves and public at risk? Why has the mental health system turned over care of the mentally ill to the police making their already dangerous job, even more dangerous?

Who’s to blame? I nominate Felix Ortiz, Chairman of the New York State Assembly Mental Health Committee. Back in 1999, at the request of families of people with serious mental illness, New York State politicians came together and passed Kendra’s Law, named after Kendra Webdale who was pushed to her death in front of a train by a young man with schizophrenia who the mental health system also allowed to go untreated.

Kendra’s Law allows courts to do two things. They can order very seriously mentally ill patients who have a history of violence or incarceration to accept violence preventing treatment as a condition of living in the community. This keeps them healthier and happier. Perhaps more importantly, courts can also involuntarily commit the recalcitrant mental health system to provide the treatment to these seriously mentally ill people, something they are notoriously reluctant to do.

It’s been a huge success. By requiring certain seriously mentally ill people to stay in treatment—with full due process protections, Kendra’s Law reduced arrest, dangerous behavior, violence, incarceration, homelessness and suicide. It saved money and improved the quality of life for those living with serious mental illness. It keeps the public and the police safer.

So what’s the problem? Kendra’s Law is rarely used. Less than 2,000 seriously mentally ill people are in Kendra’s Law because the mental health system refuses to ask courts to use it. Terrence Hale was never on it and Benedy Abreu was on it, but allowed to go off. As a result, neither was on the medicines that could have prevented the horrors experienced by the officers, and preserved their own ability to live unincarcerated.

To fix this problem, two years ago Assembly member Ailleen Gunther and Senator Catherine Young introduced a bill (A6987/S4881) that would require officials to investigate claims of family members, like the parents of Mr. Abreu and Mr. Hill instead of sending them to the police. It would require jails to notify mental health officials when releasing a prisoner who was on psychiatric medications while incarcerated so the officials can determine if they should be in Kendra’s Law. That might have helped prevent Mr. Hale from stabbing Officer Loor yesterday as Mr. Hale had a rap sheet. Another provision requires hospitals to notify mental health officials when someone who was involuntarily committed-- already been determined to be 'danger to self or others-- is being released. Again: that allows mental health officials to see if they need mandatory treatment in community. The bill would also require that mental health officials to review expiring court orders to see if they should be renewed. That might have kept Benedy Abreu in treatment and prevented Officers White and Fair from being stabbed.

Makes sense? Of course it does. That’s why it’s endorsed by the Alliance on Mental Illness of New York State, made up of parents of people with mental illness who want better treatment for their loved ones, and the New York State Association of Chiefs of Police, who want to keep the public and officers safer.

But Assemblyman Felix Ortiz Chair of the Mental Health Committee, for the second year in a row is refusing to bring the bill up, pass it, and refer it to the legislature so it can become law. He can be reached at 718-492-6334 or 518-455-3821.

Connecticut tries to help treatment providers hear from parents of people with mental illness

A big problem that people with serious mental illness have in getting the best possible care, is the treatment providers rarely have complete information, and many treatment providers specifically reject sharing information with, or receiving information from families of the ill person. This is absurd.

Families tend to have the most comprehensive information about the treatment of their loved ones. Only by receiving this information can doctors give the best possible care. For example, a doctor needs to know if a medication they are suggesting has been used in the past and whether it worked or not and what the side-effects, if any, were. Sometimes the individual with mental illness can't or won't communicate that and the records are incomplete.

In addition, people with mental illness are often released from facilities to go back to live with their parents, yet information on diagnosis and treatment is withheld from the parents. As Rael Jean Isaac famously said in "Madness in the Streets": the family has become the institution, but they are an institution without training, without financing, and without the ability to enforce compliance" (although I did the quote from memory so check me on it.)

Some doctors and treatment providers say they can't share information because of federal Health Insurance Portability and Accountability Act, commonly referred to as HIPAA (pronounced Hip-a). It is arguable as to whether HIPPA prevents providing information to parents of people with serious mental illness, but it is inarguable that it does not prevent doctors from receiving information.

Connecticut Senate Bill 452 attempts to clarify this. It revises certain laws pertaining to the treatment of people with mental illness. Connecticut law already says

Every patient treated in any facility for treatment of persons with psychiatric disabilities shall receive humane and dignified treatment at all times, with full respect for his personal dignity and right to privacy. Each patient shall be treated in accordance with a specialized treatment plan suited to his disorder. Such treatment plan shall include a discharge plan which shall include, but not be limited to, (1) reasonable notice to the patient of his impending discharge, (2) active participation by the patient in planning for his discharge, and (3) planning for appropriate aftercare to the patient upon his discharge.

But this bill adds a section stating:

Subject to the privacy protections afforded a patient under federal law, including, but not limited to, the Health Insurance Portability and Accountability Act of 1996 (P.L. 104-191) (HIPAA), as amended from time to time, the head of a facility may direct that any person involved in the formulation of the patient's treatment plan or discharge plan communicate with, and obtain medical records from inpatient and outpatient health care providers who have previously treated the patient. In addition, when formulating such treatment plan or discharge plan, persons involved in the formulation of such plans may also communicate with any person with whom the patient has resided in the twelve-month period prior to being admitted to the facility and with the patient's spouse, parents, siblings or children in order to better understand the patient's medical needs.

It's a smart idea.

Statement on Kingsboro Psychiatric Hospital Not Closing

The provision that would have closed Kingsboro Psychiatric Hospital in Brooklyn was removed from the New York State budget, meaning the hospital will stay open for the time.

"We are very happy that at least some New Yorkers who have serious mental illness will have a hospital to go to as the result of saving Kingsboro, but New York State is still short 4,311 beds for seriously mentally ill"

DJ Jaffe
Executive Director
Mental Illness Policy Org.

Our op-ed calling for saving Kingsboro:
http://articles.nydailynews.com/2012-02-23/news/31092984_1_mental-illness-mental-health-psychiatric-beds

Study showing NYS Psychiatric Hospital Bed Shortage of 4,311 beds.
http://mentalillnesspolicy.org/imd/shortage-hospital-beds.html

Study showing in NYS you are more likely to be incarcerated for mental illness than hospitalized
http://mentalillnesspolicy.org/NGRI/jails-vs-hospitals.html

Problems at NYS CQC and P&A Programs

The NYS Commission on Quality of Care (CQC) is supposed to be an outside monitor of the quality of care received by people with mental illness in New York State. They accomplish some of their work through administering the Protection and Advocacy Program (P&A). Following is our testimony to be given at hearings on Feb. 2

CQC has failed to act on the most important issues.
They focus exclusively on quality of care and ignore lack of care

P&A has focused on preventing care and illegal lobbying

Issues

NYS is Short 4,311 psychiatric Hospital Beds needed to treat the Most Seriously Ill– NYS has 5% of the beds it had in 1955. 5,269 private and public beds are available, but at minium 9,580 are needed meaning there is a shortage or 4,311 beds. In addition, many of the 5,296 are for sexually violent predators and patients involuntarily committed meaning even fewer available for people who need it. In spite of this massive unmet need of beds for people with serious mental illness, the NYS Office of Mental Health continues closing beds and CQC and P&A do nothing.

4,000 Seriously Mentally Ill NYers are Incarcerated Because OMH Refused to Treat them. In NYS you are more likely to be incarcerated for mental illness than hospitalized. Riker's Island is state's largest psych hospital. Marcy State Psychiatric Hospital was turned into a jail with some of same people in it. Of 92K NYS prisoners, 15% (14K) are mentally ill. But there are only 12K patients in all hospitals. While OMH transfers mentally ill to prisons and jails, CQC does nothing.

Number of Homeless Mentally Ill skyrocketing: 38 percent of discharges from a NYS hospital had “no known address” six months later. 96.6 percent of homeless going to Bellevue for treatment had a previous psychiatric hospitalization. CQC does nothing about the skyrocketing homelessness among mentally ill

$665 million of OMH budget (1/3) wasted per Dr. Llloyd Sederer: “Thus, taken together, $665...was spent, perhaps unnecessarily, on people with mental disorders, principally for the serious medical illnesses that they frequently suffer.” In spite of this waste, the NYS CQC and P&A Program do nothing.

NYS Office of Mental Health ignores most seriously ill. OMH serves 650,000. Only 3,600 are seriously mentally ill individuals in state hospitals and 1,871 are in assisted outpatient treatment programs. Maybe 100K are in other programs that help seriously mentally ill. Due to mission-creep, the majority of people OMH serves are not the seriously ill. OMH policies transfer the seriously ill to shelters, prisons, jails and morgues. CQC and P&A do nothing. They acquiesces to the mission-creep and OMH that puts the seriously ill at danger.

OMH impeding execution of Kendra’s Law OMH tells hospitals wanting to enroll patients in Kendra’s Law that there is a long wait for beds, thereby giving hospitals an incentive to release patients without needed treatment. OMH funds the organizations that oppose AOT, opposes making AOT permanent. CQC and P&A support the opposition to the program that has reduced hospitalization, arrest, incarceration, suicides and homelessness among mentally ill.

No oversight of PAIMI – NYS P&A Programs are have taken on legally impermissible responsibilities, have violated congressional mandates against lobbying and have sometimes even lobbied against laws that would benefit mental health consumers. Ex.NYSLPI lobbied against Kendra’s Law, used P&A funds to create a false report alleging racism which forced OMH to have an independent report done which found their report false. P&A has brought suits to make it more difficult for docs to get medical records, and has engaged in other prohibited anti-treatment activities. CQC renews their contracts year after year.

Failure to investigate systemic failures OMH refuses to correct. Andrea Peyser did an article on how Steve Muccio at P.E.O.P.L.E. was being paid to act as a representative payee for a client to ensure the client did not go off medications and on illegal drugs. At a conference attended by NYS OMH Commissioner Michael Hogan, Mr. Muccio bragged that he gave the client all the money so the client could buy drugs. When this was brought to CQC attention, they referred it to Commissioner Hogan who never responded


Recommendations

Change Law so CQC reports to Legislature not Governor.
There is a conflict of interest when the agency charged with monitoring OMH reports to the person responsible for hiring the commissioner.

CQC should focus on the most seriously ill and issues important to them
CQC focuses on those treated by OMH. But most seriously mentally ill are refused treatment by OMH and get it in shelters, jails and prisons, so CQC should focus on seriously ill independently of whether or not OMH does.

Change law so CQC focuses on lack of care, not just the quality of care delivered by mental health department
Most people with serious mental illness do not receive treatment from OMH. OMH through unbenign neglect, transfers them to shelters, prisons, jails and morgues.

Reform P&A
1. Audit to see if they are engaged in prohibited lobbying activities, end contracts with those that are, and prohibit them from bidding again.
2. Open the contracts to public bidding so NAMI and other groups concerned about treatment delivery can compete for the funds

Propose Eliminating OMH and Merging it with DOH
Putting OMH within DOH will help eliminate the $665 million Sederer says is wasted and could help end mission creep and refocus the department on the most seriously ill. This could be done in concert with the SAGE Commission

Propose OMH use the NIMH Definition of Serious Mental Illness and focus efforts on this population.
To end mission-creep, OMH should be forced to focus at least 80% of its expenditures on those with the most severe mental illnesses. By using the existing NIMH definition, we could eliminate the politics of coming up with their own definition.

Focus on what is happening to the most seriously ill (incarceration, homelessness) rather than the quality of care OMH delivers to the few seriously ill they treat

Investigate impediments to Laura’s Law put in place by OMH

Highlight the dearth of psychiatric hospital beds for the most seriously ill.

Additional Reading. This is a fantastic law journal article on how the Protection and Advocacy Program inhibits people with serious mental illness from receiving care.

SAMHSA Ignores 500,000 Seriously Mentally Ill

The Substance Abuse and Mental Health Agency's most recent and widely-quoted report on the prevalence of 'any' mental illness and 'serious' mental illness in America failed to count the 300,000 individuals with serious mental illness in jails and prisons, the 200,00 who are homeless and the 51,000 mentally ill who are in hospitals. Excluding these individuals led SAMHSA to understate the incidence of serious mental illness and overstate the percentage who receive treatment.

The new report acknowledges in the introduction and methodology sections that they ignored the incarcerated, institutionalized and homeless, but did not do so in their press release which is what most media apparently worked off of. Excluding these populations led to understating the number with serious mental illness, and since the chances of homeless or incarcerated receiving good treatment is next to nil, also understating the percentage who receive treatment.

SAMHSA has come under increasing criticism for their failure to focus on serious mental illness. A recent article by leading researcher Dr. E. Fuller Torrey in National Review, is but the latest example. I have written on SAMHSA waste of taxpayer dollars for DC Insider, a whistleblower group and Washington Times. Those articles highlight the mission-creep, waste, and counterproductivities at SAMHSA and suggest eliminating it would save money for taxpayers and improve care for people with serious mental illness. Worthwhile programs within SAMHSA (and they do exist) could be transferred to the Center for Disease Control (CDC), National Institute of Mental Health (NIMH), National Institute on Drug Abuse (NIDA) and other organizations that are much more effective, efficient, and focused than SAMHSA.

Allegedly Knife-Wielding Mentally Ill Roscoe Cambridge Shot By Anaheim Police

According to the Orange County Register, on Thursday, Anaheim police shot and killed Roscoe Cambridge, who was wielding a knife. Like Kelly Thomas, who also died in police custody, he was apparently mentally ill. Tracy Bowden, his cousin's wife posted on the "Justice for Kelly Thomas" Facebook page that her family " feared that Roscoe could be a victim of the police, because of his schizophrenia." "Justice for Kelly Thomas" is a group formed in memory of Kelly Thomas who is also alleged to have suffered from untreated schizophrenia before he was shot by police in Fullerton, CA. Roscoe Cambridge's Family started their own Facebook Group

The Facebook posting went on to say

PLEASE HELP! YESTERDAY A ANAHEIM HILLS POLICE OFFICER SHOT AND KILLED A 24 YEAR OLD, WHO SUFFERED FROM SCHIZOPHRENIA! HE WAS SITTING UNDER A TREE IN THE POLICE PARKING LOT, APPARENTLY WITH A BIBLE AND A KITCHEN KNIFE. THE SERGEANT WAS IN HIS POLICE CAR, ON HIS COMPUTER. NOW UNDER INVESTIGATION. ROSCOE CAMBRIDGE WAS MY HUSBAND COUSIN, HIS MOTHER WOULD CALL TO TELL ME HOW SHE SUPPORTED MY INVOLVEMENT WITH JUSTICE FOR KELLY. AND EXPRESSED HER FEAR THAT ROSCOE WOULD SUFFER THE SAME FATE. SHE CALLED ME THIS MORNING IN SUCH GRIEF. AND SAID "IT IS JUST LIKE KELLY'. ... GOD HELP OUR SONS AND BROTHERS WHO SUFFER FROM MENTAL ILLNESS....

Families and advocates for the mentally ill have argued that Orange County needs to adopt Laura's Law to prevent incidents like this, but Orange County supervisors have failed to act, many believe because the Orange County Behavioral Health Care Department gave the supervisors highly misleading information about the law. Carla Jacobs of the California Treatment Advocacy Coalition is leading families of people with mental illness who want Laura's Law adopted. According to her, Laura's Law would allow courts to require a very narrowly defined group of seriously mentally ill individuals (only those with a past history of violence or multiple arrests or hospitalizations) to stay in treatment while in the community. It is not known if Mr. Cambridge would meet the criteria, but the family of Kelly Thomas has stated Kelly would have. Likewise the father of Aaron Bassler says his son also had untreated schizophrenia before he shot several people in Mendocino, CA and was himself killed by police. James Bassler believes his son Aaron would have met the criteria. The father of Kelly Thomas and the father of Aron Bassler have both become proponents of Laura's Law because they believe it would have helped their children live safely in the community.

Background Docs:
New Survey of CA Law Enforcement Officers shows they are overwhelmed caring for seriously mentally ill who are abandoned by Mental Health Officials.
Mental Health Services Act can be used to fund Laura's Law
Orange County Health Care Agency Misleads Supervisors on Laura's Law
Laura's Law Orange County Homepage