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

Department of Justice Certifies Crime Prevention Program for People with Serious Mental Illness

Today the Department of Justice (DOJ) Office of Justice Programs certified Assisted Outpatient Treatment (AOT) as an Effective Crime Prevention Program. This comes on top of previous recognition by the DOJ Office of Community Oriented Policing Initiatives.
AOT allows courts to order mental health departments to provide treatment to certain people: those with serious mental illness who are likely to become dangerous or gravely disabled without treatment and who have a history of violence and refusing treatment. Historically, many mental health departments like California and New York elected to require psychotic individuals who don't recognize they are ill to become "danger to self or others" or "gravely disabled" before offering treatment. Because of this "no-treatment" policy, seriously mentally ill individuals who refuse treatment deteriorate and the police are forced to intervene. Too often, this is after the individual becomes a "psychotic killer on rampage" headline and has resulted in three times as many people being incarcerated for mental illness as hospitalized. AOT laws allow courts to require departments to provide treatment before that happens. In California, Laura's Law reduced hospitalization 46%, reduced incarceration 65%, reduced homelessness 61% and reduced emergency contacts 44%. Results in New York on Kendra's Law were equally impressive.

AOT laws were proposed by families of people with mental illness. The Department of Justice researched implementation of AOT programs like Laura's Law in California and Kendra's Law in New York. DOJ noted

The goal of AOT is to improve access and adherence to intensive behavioral health services in order to avert relapse, repeated hospitalizations, arrest, incarceration, suicide, property destruction, and violent behavior.

Police Chief Michael Biasotti recently released a major survey of senior law enforcement officers that found police and sheriffs are being overwhelmed "dealing with the unintended consequences of a policy change that in effect removed the daily care of our nation's severely mentally ill population from the medical community and placed it with the criminal justice system." A sheriff in Summit County, Ohio recently took action to prevent seriously mentally ill people from entering his jail arguing they need treatment instead. A Sheriff in Illinois is threatening to sue the mental health department to get them to treat people with mental illness. States are closing psychiatric hospitals in record numbers, further shifting the burden of care from the mental health system to the criminal justice system.

AOT programs exist in many states but are rarely used. The Department of Justice lists resources for states that want to implement AOT or expand existing programs.

Recent Trends in Mental Illness

Trend: More psychiatric hospitals close. Local NAMIs start to fight back.

The trend towards closing state psychiatric hospitals in spite of a massive psychiatric hospital bed shortage is continuing in states like Massachusetts in Illinois, in Alabama, and Washington and elsewhere. NYS announced massive closures and the NY Daily News ran our op-ed in opposition. And when they tried to close a psychiatric unit at Cedar Sinai in Los Angeles, LA NAMI protested. NAMI E. Flatbush NY protested the closing of Kingsboro Psychiatric Hospital in Brooklyn. Historically, NAMIs have accepted hospital closures in return for the promise of community services that never materialize. Nice to see them not falling for it again. It would be great to see state level organizations join in.

Trend: Criminal Justice Systems are taking lead in advocating for better care for seriously mentally ill because Mental Health Departments are failing so miserably.

As a result of mental health departments taking a laissez faire attitude towards serious mental illness, there are more people incarcerated for mental illness than hospitalized. For example, the shooter of seven at Western Psychiatric Hospital turns out to have been mentally ill, known to mental health system, and left untreated. Incidents like this are causing some law enforcement officials to make getting better treatment for people with mental illness a priority, so they don't have to step in.

• American Police Beat Magazine ran a story we wrote, "Police overwhelmed by Mentally Ill", based on a survey by Police Chief Michael Biasotti.
• An Ohio Sheriff announced he is refusing to allow police to drop people with mental illness who are violent off at his jail. He wants them to get treatment instead. This was fantastic news and the first time we've ever heard something like that. MIPO supported the Sheriff .
• A sheriff in Cook County, IL has threatened to sue the mental health department to stop them from refusing to treat people with serious mental illness.
• The Department of Justice issued Community Policing Guidelines which endorsed AOT as a way to return treatment to mental health departments. Another announcement from DOJ is imminent.

Trend: Consumers buck consumertocracy

More and more consumers are exercising their independence and speaking out. Natasha Tracy, a great consumer blogger wrote, "Human Rights and AOT" and about non-compliance.

My favorite quote this month, was from Consumer Blogger Andrew Behrman in "Dump Stigma and Focus on Recovery" who wrote, "The stigma started with me. I initiated it. It was my own fault & result of my naivete"

The Substance Abuse and Mental Health Services Agency (SAMHSA) conducted a survey asking their largely consumer constituency what the top advances in care were over the last twenty years. Assisted Outpatient Treatment made top five. Unfortunately, SAMHSA has a habit of ignoring issues that only affect people with serious mental illness. As we wrote on Huffington Post, SAMHSA's widely quoted report on Mental Illness in America ignored 500,000 seriously mentally Ill

On the other side some government funded professional consumers ("consumertocracy") are still promoting nonsense.

• One professional consumer wrote that because there is no biological test for schizophrenia, it must not exist. That's kind of like arguing that colon cancer didn't exist before the colonscope was invented. (BTW, there is no biological test for Parkinsons either. Yet it exists.)
• Many professional consumers are using the fact that people with mental illness die earlier than others as an argument against medications. But many of these premature deaths are due to side effects of non-treatment. For example suicide, homelessness, incarceration, and lack of medical care.
• Robert Whitaker's Anatomy of an Epidemic repeated many of these arguments without any information on the other side.

In Brief

• Major study says 'art therapy' does not work for people with schizophrenia
• Scientist asks for proof that anti-stigma campaigns work
• APA Task Force Report on Outpatient Services for the Mentally Ill Involved in the Criminal Justice System argues for preserving psychiatric hospitals and using mandated outpatient treatment
• Short Sweet Video of Dr. E. Fuller Torrey on his updated book: The Insanity Offense, which includes the most comprehensive information on Jared Loughner who suffered from untreated mental illness and shot Gabrielle Giffords. (Must-reading)
• "Crazy in America: The Hidden Tragedy of Our Criminalized Mentally Ill" by Mary Beth Pfeiffer is really wonderful. She shows how tiny episodes of mental illness feuled behavior can snowball and result in permanent incarceration. Two thumbs-up. (Don't confuse this with another excellent book: Pete Earley's, "Crazy: A Father's Search Through America's Mental Health Madness")
• Treatment Advocacy Center Preventable Tragedies database lets you search incidents of violence by and to people with mental illness in your own state. Powerful tool to advocate for changing laws

Around the states

California

Laura's Law and ever increasing incidents of violence by mentally ill individuals took center stage in California. A bill to Extend Laura's Law was introduced and given huge support by San Francisco Chronicle. A brilliant Sacramento Bee op-ed by psychiatrist Gary Tsai says cuts to mental health programs shift burden to law enforcement. To help people keep up, we launched a special site on Laura's Law and the Mental Health Services Act with lots of useful information. Unfortunately mental health directors, Disability Rights California, and consumer groups have formed a coalition designed to prevent people with mental illness from receiving treatment until after they become dangerous. While done in the name of 'civil rights', this results in people becoming incarcerated and losing all rights.

The other big California story is Proposition 63/Mental Health Services Act money being diverted away from serious mental illness. For instance, it is funding the opponents of Laura's Law. Mary Ann Bernard, Of counsel for Mental Illness Policy Org wrote a great piece in California Progress Report on this, and DJ Jaffe, ED of MIPO wrote a a separate story, "Proposition 63 fails to serve seriously mentally ill" in Capital Weekly.

New York

MIPO testifies that NYS Commission on Quality of Care fails mentally ill and we wrote an op-ed in New York Daily News criticizing proposed closings of psychiatric hospitals.

VA

Pete Earley on failure of Virginia mental health system

TX

Judge rules mentally ill incompetent to stand trial are being held in jail for too long before being moved to hospital

VT

Report calls for better care to prevent incarceration of mentally ill

MA

MA agrees to treat mentally ill prisoners better and revised their Civil Commitment practices.

Thank you for your support of Mental Illness Policy Org. This is a labor of love, and if you can afford it, we can use your tax-deductible donations.

 

Closing New York State Psychiatric Hospitals is Cruel & Dangerous

Michael Hogan, Commissioner of the New York State Office of Mental Health recently announced the proposed closure of Kingsboro Psychiatric Hospital in Brooklyn and others. This is the latest step by the New York State Office of Mental Health (OMH) to get out of the business of providing treatment to people with serious mental illness. In the last twelve months, OMH announced they are "reducing census"--i.e., kicking the mentally ill out of--Bronx, Mohawk Valley and Sagmore Psychiatric Center.These came on top of previously announced closings at Rockland Psychiatric Center, Pilgrim Psychiatric Center, Mid-Hudson Forensic Psychiatric Center, Hudson River Psychiatric Center, and Buffalo Psychiatric Center. Unions and families of people with serious mental illness are mad.

New York State Office of Mental Health Commissioner Michael Hogan and Governor Andrew Cuomo say patients will get the same services elsewhere. Some will. Most won't.

The impact of this insane let-em-lose-to-fend-for-themselves policy is cruel to people with mental illness who desperately need and want treatment. But it's also dangerous to the public.

According to the Daily News, late last month, "A 25-year-old mentally ill Brooklyn man stabbed his mother and kid brother and beat them with a hammer." Near where Buffalo Psychiatric Center reduced beds, 6,300 homes experienced a blackout when a recently released allegedly mentally ill man used a chain saw to cut down utility poles. Near where Rockland Psychiatric Center reduced beds, police rescued a suicidal mentally ill man who was off medications, barricaded in his home and brandishing a pellet gun. And earlier this month, between where Rockland County Psychiatric Center and Hudson River Psychiatric Center reduced beds police shot and killed allegedly mentally ill Tim Mulqeen who brought a loaded shotgun and 50 rounds of ammunition to a city court.

When will this madness end? New York went from 599 psychiatric beds per 100,000 citizens down to twenty eight. And the new closures take us even lower. OMH is simply transferring the seriously ill to the criminal justice system. New York incarcerated 14,000 people with serious mental illness largely because OMH only has beds for 3,600. There are more mentally ill in a single jail, Riker's Island, than all state hospitals combined. The most conservative estimates are that if New York had the best community services available -- and we don't -- it would still need 4,311 more hospital beds to meet the minimum needs of seriously mentally ill New Yorkers.

A new study on "Homeland Security and Mental Illness" by Chief Michael Biasotti, vice-president of the New York State Association of Chiefs of Police found law enforcement is being overwhelmed by this "policy change that in effect removed the daily care of our nation's severely mentally ill population from the medical community and placed it with the criminal justice system." Families of people with serious mental illness are up in arms. In New York, hospital closures mean you are now more likely to be arrested for having a serious mental illness than hospitalized.

One would think ensuring the seriously mentally ill get treatment would be the core mission of the Office of Mental Health. But it hasn't been ever since Michael Hogan was appointed commissioner. His stated goal is to "create hope filled, humanized environments and relationships in which people can grow" not getting medications to the seriously mentally ill. One can understand what drives his hospital closure policy--"Hey Gov., look how much money I'm saving!" But it's harder to understand how Cuomo doesn't recognize the impact on people with serious mental illness, public safety, and how Hogan's efforts to save OMH money are costing the criminal justice system and the state much more. Robbing Peter to pay Paul?

OMH should not be kicking patients out of hospitals. It should be sending it's sickest citizens to the front of the line for services, not the rear.

California Mental Health Services Act Fails to Focus on Serious Mental Illness

The chair of the California Mental Health Services Oversight and Accountability Commission (MHSOAC) wrote an op-ed in Capital Weekly criticizing families of people with severe mental illness who criticize how Mental Health Services Act (MHSA) funds are spent. He claims the program is working well. But it's not. For one, the oversight committee itself is diverting MHSA funds meant to help people with severe mental illness to other causes. In their case, it's to hire a PR firm to further the oversight committee's claim that all is well. How does hiring a PR firm help people with severe mental illness? Is that why taxpayers voted to tax themselves? They felt a dearth of PR firms? To cite another example, the California Mental Health Services Authority made a multi-year commitment to fund a "Center for Dignity, Social Inclusion and Stigma Elimination." Instead of providing treatment and services to people with severe mental illness, it will provide ads and brochures to the public.

When the myriad of examples like this are documented, the chair of the committee, Dr. Larry Poaster wrote that critics are "use(ing) single anecdotes out of context and ignore overwhelming facts." But it is Dr. Poaster who fails to present the big picture.

As part of the committee chair's claim that MHSA is working well, he points to a report that shows MHSA Full Service Partnerships (FSP) reduced hospitalizations, arrests and incarcerations. Those claims are probably true. It's a good and important program. But he fails to disclose that these programs are exclusively for voluntary patients. The homeless psychotic people on the streets who 'know' they are Jesus or the FBI planted a transmitter in their head -- the most severely ill who refuse treatment can not get access to these programs. They are turned over to police and law enforcement in record numbers. As a result of realignment, many may soon to be discharged back into the communities where service providers will again refuse to serve them.

Dr. Poaster correctly notes that 20% of total MHSA funding goes to "Prevention and Early Intervention" programs. The law requires those programs to be "designed to prevent mental illnesses from becoming severe and disabling." But the oversight committee's guidelines to counties say, "(P)revention programs are expected to focus on individuals prior to diagnosis of a mental illness. (emphasis in original)." 20% of MHSA funds meant to help people with mental illness are now being diverted from their proper destination. The mentally ill are specifically excluded. Dr. Poaster claims these programs are effective but MHSOAC minutes show their evaluation "is based on what counties said they were going to do, rather than actual on-the-ground assessment."

In defense of the status quo, the Oversight Commission chair claims that counties, not the committee, set priorities and that millions were spent on a process that included "the diverse segments that are affected by mental health: schools, law enforcement, homeless programs, social services, faith communities and countless others." Prop 63 was not passed to improve mental health (make people happier) it was passed to "reduce the long-term adverse impact... resulting from untreated serious mental illness." Including these 'countless others' led to a money-grab free-for-all and counties developing amorphous something-for-everyone plans that focused primarily on 'social services' rather than treatment and services for those with severe mental illness. Lack of housing, education and employment were defined as 'risk factors' for poor mental health, and therefore housing, education and employment programs were showered with money that should have been spent helping people with severe mental illness. Except in the case of Nevada County (and more recently Los Angeles county) none of the county plans included implementation of Laura's Law, and making services available to those enrolled. Services for Laura's Law recipients is the exact type of "new and innovative" services MHSA should be funding.

Millions continue to be spent on process, committees, consultants, PR firms, publishers, art directors, and writers instead of programs for people with severe mental illness. Orange County just published an expensive glowing report on their use of MHSA funds, but no useful financial data that would help the public see where the money was going. And the report was fifty pages long.

As Rusty Selix, executive director of the California Council of Community Mental Health Agencies stated in reviewing where we are, "In many ways, conditions are horrendous and difficult, but we're kind of used to that."

As the family member of someone with severe mental illness, I am not used to that. The problems with MHSA are not 'isolated incidents'.

What's the answer?

1. The legislature should require distributors of MHSA funding to follow the language and clear intent of the law and only distribute MHSA funds to programs that focus on "severe mental illness." They can accomplish that by adopting the National Institute of Mental Health's definition of 'serious mental illness,' which covers no more than 8% of the population and require all or the majority of MHSA funding to be spent on this targeted population. By using this definition, California can avoid the wrangling that would result from trying to create its own definition.

2. The state should use its "clarification" power under Section 18 of MHSA to eliminate regulations that are contrary to law and direct desperately needed MHSA funds towards uses consistent with MHSA.

3. Rose King, a veteran California political consultant who was involved in writing MHSA legislation makes a good case for the legislature to reexamine the maintenance of effort provision, which created a two-tier system: those with serious illness who received minimal and substandard services prior to MHSA are now routinely and intentionally denied any MHSA-funded services, while those who are barely ill, or not ill, get comprehensive services.

4. Carla Jacobs of the Treatment Advocacy Center says the legislature should remove the sunset provisionfrom Laura's Law because it discourages counties from making the long-term plans needed to correctly implement it. Once Laura's Law is implemented, MHSA funds could be used to serve those enrolled in Laura's Law in programs already serving others.

5. MHSA boards should be independent of the organizations they fund. End the conflict of interest caused by board members, employees, former board members and former employees of MHSA recipients serving on the oversight committees.

The critics of MHSA do not have an MHSA-funded PR firm on their side. But they do have the facts.

SAMHSA vote: Assisted Outpatient Treatment one of Most Important Advances

The Substance Abuse and Mental Health Services Agency (SAMHSA) periodically conducts an unscientific online poll of it’s constituency. The most recent poll was to define the most important behavioral health milestones over the past twenty years. The way the poll works is that individuals can enter ideas online and then the SAMHSA constituency votes. The slight issue with this is that if two people enter the same idea, the vote can get split.

The number one and two vote-getter was peer support and consumer driven care. Several people entered it using various wording and individually or collectively it was the clear winner.  This is not surprising. SAMHSA funds peer services. The organizations that receive the funding make sure their members vote to preserve their funding. And because these organizations have SAMHSA-funded staffs they are very effective. But if you combine number one and number two (both peer support) you find the next highest vote getter was a surprise: Assisted Outpatient Treatment

SAMHSA does not usually focus on efforts to help people with the most serious mental illnesses, so seeing AOT come in as the second most important advance was a surprise. 964 individuals voted for “Implementation of AOT” (which Mental Illness Policy Org proposed) and another 181 voted for “Court Ordered Outpatient Treatment” which was proposed by someone else. These are the same, making for a total of 1145 votes which made Asssisted Outpatient Treatment the clear second place winner.  This in spite of the fact that the SAMHSA-funded consumertocracy organized a vote against AOT. (This is kind of like having an election and allowing people to vote for one candidate and also cast a vote against another. It is only the first vote that counts.)

 SAMHSA has previously asked the public to weigh in on issues. Last year they asked what strategic initiatives they should promote and in that poll Increase use of Assisted Outpatient Treatment came in third.  Unfortunately, SAMHSA ignored that poll, and will most likely ignore this most recent one.

SAMHSA has been widely and recently criticized for their failure to focus on serious mental illness and wasting money by Mental Illness Policy Org, Dr. E. Fuller Torrey, the Treatment Advocacy Center and others. Many believe SAMHSA does more harm than good and should be eliminated. If SAMHSA ignores the most recent poll, they will prove their critics right.