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.

Lynn Shuster: Hero of Mental Illness Advocacy

I once wrote an essay on my hero, Dr. E. Fuller Torrey. Today, it's about another hero: Lynn Shuster. Lynn Shuster (and her partner in crime, Mary Kirkland, who I don't know as well, but admire from afar), were until recently leaders of NAMI/Buffalo. They are so extraordinary that the Buffalo News ran an article on their decision to step down.

Lynn has been my idol ever since I joined the movement (CA 1982) to improve care for the most seriously ill. She was older than me, and different than every other NAMI member. How? Lynn doesn't --as she would say, "take any shit". She makes these bald, impolitic, truthful statements about how horrific the mental illness treatment system. Everyone else was pulling their punches and ignoring the elephant in the room: treatment for the most seriously ill sucked and no one was doing anything about it. And she would reel in horror when others who called themselves 'advocates', tried to say how nice Commissioner so-and-so was. "He could be the nicest man in the world. Our job is to make him do his damn job and give the seriously ill better care!" she would say (usually followed by "sheesh").

I once wrote an article, "NAMI's Delusions: Counterproductive Beliefs Held by Mental Health Advocates" almost entirely based on what Lynn taught me.

Lynn has this ability to focus on the most important issues, even while all other advocates are focusing on feel-good ones. While they were trying to create pretty brochures, Lynn was trying to save psychiatric hospitals. While they were criticizing the lack of "people first" language, she was trying to stop the system from jailing people merely because they had mental illness.
Lynn taught me that being at the table isn't as important as making progress and that the two are often inversely related. In a note about her retirement, she wrote:

Never trust a bureaucrat. It's THEIR money (and power and prestige, it's just our loved one's lives. And we know which comes out on top. "Making nice" makes you feel good, but doesn't result in success. News reporters are our friends. Tell the truth, the REAL truth.... Maintain a sense of humor even in dark days--we all need to laugh. Persevere. Persevere some more.... 

 Lynn (and Mary): You're right. I'm gonna "persevere". I'm gonna start a new Facebook Group called, "Bring Lynn and Mary Out of Retirement".

Mental Health Industry, 2. Mentally Ill, 0.

In New York State the battle to improve care for people with serious mental illness has become increasingly polarized. On the one side, favoring improved care for people with serious mental illness are families of the mentally ill, people with serious mental illness, law enforcement, and the general public. On the other side, is the New York State community-based mental health industry, funded by the New York State Office of Mental Health.

The community-based mental health system won two victories. Earlier this year, they won the battle to close state psychiatric hospitals which only serve the seriously ill. Last week, they had their second success: They preserved cracks in Kendra’s Law that allow them to deny services to people with serious mental illness.

The Kendra’s Law Improvement Act had been proposed by Assembly member Aileen Gunther and State Senator Young. It would have improved the information flow so local mental hygiene directors were made aware of involuntarily committed psychiatric patients and mentally ill prisoners who were being discharged to their jurisdictions. That would have allowed mental health directors to triage the individuals to see they get the right voluntary or Kendra’s Law care to enable them to function in the community.

The mental health directors vigorously opposed Kendra's Law and they were joined by mental health trade associations who feared that if new people with serious mental illness were identified, they would have to treat them rather than being allowed to offload to jails, prisons shelters and morgues. (There are more mentally ill in a single NY jail, Riker’s Island, than all state psychiatric hospitals combined. The opposition to treatment was led by NYAPRS a trade association that has now moved on to lobbying for less medical care for people with serious mental illness (NYAPRS only provides non-medical care).

 As a result of this ‘victory’

•  Involuntarily committed patients will continue to be released into the community without treatment 
• Mentally Ill prisoners will continue to be released into the community without treatment 
• Officials will be allowed to continue to ignore reports of mentally ill persons when those reports come from families 
• Individuals who do well in Kendra’s Law, will continue to be able to get out from under the court order merely by moving to a different county 
• Individuals who do well in Kendra’s Law will continue to have their orders expire without a review of whether that is safe or not. 
• We will have more incidents of violence by and to individuals with serious mental illness like the 90 Preventable Tragedies that might have been prevented had the cracks been closed.

Perhaps Vanessa Bellucci said it best. Her mentally ill brother killed both their parents and that gave her the unique ability to see the issue from both perspectives: the perpetrator's and victim's. In an op-ed she wrote:

As a result of the cracks in Kendra’s Law, my parents are dead and my brother remains in prison, adjudged as being incompetent to stand trial. Perhaps with the proper support from the mental-health system, this all could have been avoided and I could have had parents to give me away at my wedding next year, and my nephew could have had his uncle and grandparents around to watch him grow up. It’s too late for my family, but not too late for others.

The law sunsets in two years. Advocates for improved care will be back to improve Kendra's Law and the community mental health system will come back and defend the status quo.

June Update: Mental Illness Around the Country

1. Make Greater Use of Assisted Outpatient Treatment

• Assisted Outpatient Treatment is less expensive, less restrictive, and more humane than it’s alternative: inpatient commitment or incarceration.
• AZ: He met his case manager on Monday and was dead by Friday, showing the need for AOT.
• NY: As the result of police stabbings by people with mental illness, the bill to close cracks in NY’s Kendra’s Law (A6987/S4881) gathered new attention. The bill sponsors wrote an op-ed in the NY Post on how their legislation would require mental health authorities to evaluate mentally ill prisoners and involuntarily committed psychiatric patients before they are discharged from prisons and hospitals to see if they need Kendra’s Law or other treatment to stay healthy and safe. Research shows it works. It is supported by virtually everyone (public, patients in the program, families, and law enforcement). The only opposition is from the mental health system itself, which simply does not want responsibility for the most seriously ill when they can offload them to shelters, jails, prisons and morgues. Thanks to Mental Illness Policy Org., op-eds and editorials have appeared in Albany Times Union, NY Post, NY Daily News, Staten Island Advance, Buffalo News, Ithaca Journal, Schenectady Gazette, NY News, and elsewhere. We identified 90 tragedies that might have been prevented had the cracks in Kendra’s Law been closed in 2005 when first identified. Call Assembly speaker Sheldon Silver at 518-455-3791 and Governor Cuomo at: (518) 474-8390. Urge them to Pass the Kendra's Law Improvement Act (A 6987) to Close the Cracks In Kendra's Law
• CA:    Laura’s Law has had tremendous results in California, but a powerful anti-treatment coalition is preventing widespread adoption of the law. The Fullerton Homeless Task Force recommended Orange County adopt Laura’s Law. Laura’s Law is up for renewal and the California LPS Reform Task Force is urging supporters to send letters in support of Laura’s Law  to the Senate Health Committee c/o State Capitol, Room 2191; and to the Assembly Health Committee in Room 6005, Sacramento, CA, 95814.  Articles and op-eds on the importance of Laura’s Law appeared in San Luis Obispo,
• NJ put out a contract to start Gregory’s Law
• TN passed a pilot AOT program
• Bexar County, TX is considering starting an AOT Pilot and a jail In San Angelo is trying to send mentally ill back to the mental health system

2. Focus more resources on serious mental “illness” rather than mental “health”

• National:  Articles by Marvin Ross in Canada, Dr. E. Fuller Torrey in Washington, Carlat Psychiatry Blog, and MIPO, all criticized Robert Whitaker’s, Anatomy of an Epidemic for using pseudo science to make the case that medicines don’t help people with mental illness. Natasha Tracy wrote “Why it’s ignorant to write off psychiatry” And the Lancet published a meta analysis that shows Whitaker is wrong. Meds do work
• Are we arbitrarily diagnosing people with mental health problems? Asks Pete Earley.
• AZ may see more mental health resources invested in the community as a result of a recent lawsuit settlement
• NH: We criticized New Hampshire officials for patting themselves on the back when there are more mentally ill incarcerated than hospitalized in that state.
• NY As incredible as it sounds, NYAPRS, a trade association of mental health providers in NYS actually started lobbying for less medical treatment for people with serious mental illness.
• WA: A seriously mentally ill man who was without treatment shot 5 in Seattle and then himself.
• California is unique in that it has plenty of money as a result of Proposition 63 which funded the mental health services act which is supposed to help people with serious mental illness. Unfortunately county and state officials continue to squander the money.

3. Preserve enough hospital beds so seriously ill can get access

• Bloomberg News ran a terrific piece picked up in Business Week and elsewhere suggesting that we have gone too far in cutting hospital beds for seriously mentally ill. And Dr. Stephen Moffic criticizes the American Psychiatric Association for failure to focus on inpatient crisis.
• CA mentally ill languish in jail due to budget cuts.
• GA sheriff argues to keep mentally ill out of jail

 

4. Change Not Guilty By Reason Of Insanity So it Helps People

• Legal argument why people with mental illness should be exempt from death penalty
• Not guilty by Reason of Insanity is likely to get more attention as the alleged killer of Etan Patz may plead mental illness.
• TX has a grizzly plan to medicate someone so they can execute him

5. Reform Involuntary Treatment Laws so they prevent violence, rather than require it

• CA: The LPS Reform Task Force issued their latest report. Sign up for their emails.

In Brief

 

• 3 Reasons I didn’t celebrate Mental Health Awareness Month
• Dr. E. Fuller Torrey on how to reduce stigma
• Peer Support can hurt people with mental illness
• In 2008, Vince Li, who has schizophrenia and rejected treatment beheaded someone on a Greyhound Bus. In this jailhouse interview he says he wishes someone would have forced him to stay in treatment.
• Stigma campaigns may decrease chance mentally ill get treatment
• Saying Goodbye to someone with mental illness: When not to help

NYAPRS proposes reducing funding for medical treatment of mentally ill

Medicaid realignment in New York is expected to generate $10 billion in savings over five years and the plan is to spend much of it on medical care for people with serious mental illness. That's good news to everyone except the NYS Assoc. of Psychiatric Rehabilitation Services--the trade association for providers of non-medical services to voluntary mental health patients. In a blog, NYAPRS wrote

(C)oncerns have been raised (about) a general emphasis on medical approaches that provide insufficient attention to expanding rehabilitation, peer support and culturally competent ones.

As if giving medical care to someone is the opposite of cultural competence.

As a result of the lack of medical care more people of color are incarcerated for mental illness than hospitalized. And disproportionately so. That is one reason why Kendra's Law is supported by groups made up almost entirely of people of color, like the local Harlem Alliance on Mental Illness. (Consumers too). Extensive Kendra's Law research shows it helps those enrolled, get well and stay well. Yet the trade association is trying to preserve cracks in Kendra's Law that allow their members to avoid treating people with serious mental illness.

I recognize that the trade-association only provides non-medical rehabilitation services and focuses on mental health not mental illness. And I understand that when you see a bucket of money, you want to divert it to your own members. But many people with schizophrenia need, gulp, medical services. Specifically, symptom amelioration. That is what enables them to reach the point where they can benefit from rehab services. NYAPRS wants to take those medical services away, so the funds can go to their association members. The employees of association members are then urged to also lobby for more money for their members.

What is especially disingenuous is that in an op-ed the trade association, as part of their continuing battle against Kendra's Law (a less restrictive, more humane alternative to incarceration or commitment) recently wrote that instead of Kendra's Law

A better approach is to back new programs designed by the governor’s Medicaid Redesign Team to make our mental-health services more effective.

On the one hand they argue that Medicaid Redesign is going to help the most seriously ill and on the other write they don't want the Medicaid used for medical care.

You can't have it both ways. But that's unlikely to stop them from trying.

New York Needs Kendra's Law: You can help

(May 2012, New York) Kendra's Law allows courts to order a small subset of people with serious mental illness who have a past history of violence to accept treatment as a condition for staying in the community. Kendra's Law has been very successful at keeping patients healthier and preventing needless deterioration to violence. See Kendra's Law op-ed in Albany Times Union.

But Kendra's Law has giant cracks in it that send the most seriously ill to jails, prisons, shelters and morgues. A bipartisan Kendra's Law Improvement Act has been proposed to close the cracks that has wide-ranging support including by NAMI/NYS, NYS Chiefs of Police and many others who want better care for people with mental illness. But it is being vigorously opposed by OMH funded community mental health providers and county mental health directors who don't want to have to treat the most seriously ill. They prefer to cherry-pick the easiest to treat for admission to their programs and bury their head in the sand about the most seriously ill.

Please call Assembly speaker Sheldon Silver at 518-455-3791 and Governor Cuomo at: (518) 474-8390.
Urge them to Pass the Kendra's Law Improvement Act (A 6987) to Close the Cracks In Kendra's Law
We have generated media attention, but not enough calls
This is critical.

The legislative session is coming to an end and Cuomo, Silver and Skelos will be deciding whether or not to help people with mental illness by closing cracks. The NYS mental health industry is lobbying them heavily to preserve the cracks.

Thank you for all you do. Spread the word. Forward to friends.

The media is on our side, but we need more calls:

Op-ed in Today's Albany Times Union
Op-ed in Yesterday's Buffalo News
Editorial in NY Daily News
Op-ed in NY Post by Bill Sponsors
Op-ed in Ithaca Journal:
Letter in Schenectaday Gazette
Op-ed in NY Daily News
Editorial in Staten Island Advance

DJ Jaffe
Executive Director
Mental Illness Policy Org.
http://kendras-law.org