PACT teams need AOT

Assisted outpatient treatment drastically improves PACT teams’ ability to provide treatment.

Sometimes called a “hospital without walls,” PACT (Program in Assertive Community Treatment) teams, also called ACT teams, bring critical treatment services to the patient. NAMI calls ACT teams “highly effective” and SAMHSA notes that experts consider them to be “an essential treatment option.”

What isn’t widely publicized is that PACT incorporates the state hospital function of using civil commitment to ensure treatment compliance. In fact, the PACT Manual states that the program has a “consistent record of serving involuntary outpatient treatment clients at no less a level of effectiveness than voluntary ones.”

Of course, if you live in a state with no option to use AOT, like New Jersey, PACT teams don’t have that tool. In these cases, PACT teams are powerless to help someone who refuses treatment. This is even more troublesome in states like New Jersey, because refusing clients remain with PACT even if they refuse its help. That means New Jersey citizens are paying for people to refuse the most expensive services the state has to offer – 1 out of every 4 people enrolled in PACT does not participate.

Even in the 42 states that have AOT laws on the books, PACT teams in the field do not always use it. An article in the journal Social Service Review compared two PACT teams – one team located in a state where outpatient commitment was legal, but not an established practice. The other team used outpatient commitment in about 10% of cases to require treatment participation and, in some cases, to mandate patients to take medication.

Both teams report using similar interventions to promote adherence – monitoring, listening, persuasion --- until a client becomes nonadherent at which point their practices are strikingly different.

Staff on team where AOT is used in about 10% of cases:

• In order to avoid any potential conflict that court-ordered treatment may produce between the team and the client the team tries to treat mandated clients the same as they treat the rest of the clients, for example, by focusing on the client's own recovery goals.
• Some clients readily accept the formal mandate in court, agreeing to comply "because they've been in the program and it means really not a whole lot different than the day before it happened."
• Team members routinely supervise mandated clients in taking medication and remind the clients that the court order will be enforced if they do not adhere.
• Some clients attempt to defy orders by "cheeking" medications. In those cases, the team uses creative ways of enforcing the order.

Staff on the team in state that doesn't use AOT:

• Because they do not use outpatient commitment, involuntary commitment to inpatient treatment is the primary means of pressing nonadherent clients to accept treatment.
• Team members reported watching clients undergo a downward spiral, because there is often a long interval between the early signs of decompensation and the clients meeting the standards for commitment.
• They essentially play a waiting game until the client exhibits some sort of violent or self-harming behavior that warrants involuntary commitment.
• They describe one patient who stopped taking medication and didn't want to see the team. They knew if they tired to hospitalize her, the hospital staff "can decipher in like 15 minutes that she doesn't need to be hospitalized. We just see that if she, you know, physically or willfully abuses somebody, then we can have documentation."

The PACT comparison shatters (yet again) some of the oft-repeated myths about assisted outpatient treatment.

• Dragnet for all patients - The team used court orders sparingly, for about 10 % of clients. The vast majority of patients did not get orders.
• Easy way out for providers - The team used traditional methods of soliciting adherence first and only used the court order as a last resort.
• Damage to therapeutic alliance - The team found ways of preserving the relationship by working with the client's recovery goals and trying to treat them like other clients. Besides, the team that didn't use treatment orders still didn't have a therapeutic alliance because she refused to see them.
• Mandating treatment won't work - The team reported that most clients followed the order. The team took steps to enforce the order when clients didn't comply
• Services aren't available - In this case, these were clients who were already receiving services- that wasn't the issue. The court order provided a means for the team to encourage compliance and ensure that the client benefited from those services.
• Limits autonomy- The teams that used medication orders were able to ensure that patients remained compliant and therefore stay in the community which offers significantly more autonomy than the hospital.
• Court orders take too much time - It takes much less time to get a court order than it does to watch someone spiral downward - basically managing their psychosis and hoping that you are there when they do something that can get them hospitalized... and hope they don't hurt themselves or someone else in the process.

According to Dr. William Knoedler, who directed and worked as the psychiatrist for the original PACT team in Madison, Wisconsin, from 1972-1997 and currently provides consultation on and training for the PACT model nationally and internationally, “the PACT teams he works with have 20-25% of clients under a civil commitment and another 5% on probation/parole.” He explained, “Obviously, we do not shy away from use of involuntary services when called for and take seriously our charge to implement the court’s wishes.”

PACT is extremely successful. But without using AOT, it is just another excellent tool unavailable to those who are the most ill.

How many tragedies will it take?

Joel Seidel’s tragic death spurred reforms in Camden County’s jails, new diversion programs by police departments, and a federal lawsuit that was recently settled for $4 million. The one area that has yet to enact reforms? New Jersey’s mental health system.

New Jersey is still one of only eight states without the ability to order AOT for individuals who are unable to maintain their treatment in the community. Individuals like Joel Seidel, who according to news reports, had repeatedly refused to take medication for schizophrenia and had failed to complete outpatient treatment programs. An attorney for Seidel’s family explained that they hadn’t posed the $150 bail that would have released him because they were hoping he would be involuntarily committed to get the help he needed. Sadly, he never got that chance. His lifeless body was found about an hour before his scheduled court hearing on his involuntary commitment.

AB 2304, a bill that would finally provide New Jersey the opportunity to help those like Joel Seidel, sits in a committee awaiting action. It should be passed before the next senseless tragedy occurs.

Too late for Seidel, NJ could still save others

Joel Seidel, a frail 65-year-old retired stockbroker with schizophrenia, was stomped to death in 2004 in a Camden County, New Jersey, jail.

His cellmate, accused of the murder, was so violent he had been sent to jail from a psychiatric hospital after he raped another patient. Jail procedures in New Jersey have since been reformed to prevent vulnerable inmates from being housed with violent ones. Seidel’s family hopes those procedures will be made permanent in a settlement of a lawsuit against the county.

But what has been done to prevent people like Seidel ending up in jail in the first place?

Seidel “repeatedly refused to take medication for schizophrenia and had failed to complete outpatient treatment programs.” His family did not bail him out of jail because they believed that he “could only get help if he was involuntarily committed to a county psychiatric hospital” from the jail.

If his family had had some other way to ensure he would participate in treatment in the community rather than getting treatment via jail, he might be alive today. But the family’s hands were tied because New Jersey is one of only 8 states whose archaic law prevents court-ordered community treatment. Community treatment programs were available for Mr. Seidel – he was just too sick to realize he needed treatment. A court order might have saved his life.

A bill (S1093) that will help prevent other New Jersey families from facing the Seidel family’s dilemma and tragic loss passed the New Jersey Senate unanimously nearly a year ago. But it is still not law because the Assembly Human Services Committee has not even scheduled a hearing for the bill (A2304).

New Jersey must act now to make community services available to people like Joel Seidel who are too sick to participate voluntarily.

Support for AOT in New Jersey

TAC executive director Mary Zdanowicz’s recent op-ed in the Star Ledger has prompted a flurry of responses from families and advocates across New Jersey, echoing Mary’s calls for passage of AOT legislation in New Jersey. If you'd like to help advocate for change in New Jersey, write a letter to the Star-Ledger today!

Recent letters to the editor in the Star-Ledger:

Three cheers for Mary Zdanowicz for stating clearly one major problem with our mental health system. New Jersey lags far behind other states in dealing with one of the most stubborn problems facing families and mental health professionals. Our system waits until a person is a danger to himself or others before he can receive involuntary treatment in a psychiatric hospital. There is no mechanism for allowing assisted outpatient treatment before that point is reached. More from Elaine Goodman...

Expanding the availability of court-ordered community care can achieve this by avoiding unnecessary hospitalizations and treating the illness before it spirals out of control. Whether you call it outpatient commitment or assisted outpatient treatment, it has been effective in New York and elsewhere. More from Raymond Deeney...

We support passage of greatly needed legislation to provide for involuntary outpatient treatment in New Jersey. Passage of this bill is vital to treating the severely mentally ill. We are the parents of someone who suffers from a serious mental illness and know firsthand the difficulty in getting help when a patient goes off his medication. Most often, patients require crisis team intervention and consequent hospitalization. More from Warrren and Irene Cook...

She suffocated her parents so they would live...

Harvard educated doctor, Kathleen Hagen, has struggled with bipolar disorder her entire life. Seven years ago she spiraled into psychosis and heard a voice that told her she could transport herself and her parents to a better place by suffocating them.

"I was thinking about Resurrection with a capital 'R,'" said Hagen. "I thought they were going to arise and I was going to hear Mommy in the kitchen making breakfast."

Hospitals as scapegoats

Across the country, the few state psychiatric hospitals left are taking the blame for failures in the mental health community. TAC executive director Mary Zdanowicz outlines the problem in an opinion piece in New Jersey's Star Ledger.

“New Jersey already closed one hospital and "reinvested" the money in the community. Yet the psychiatric hospitals are overcrowded because community mental health providers can't -- or won't -- do what is necessary to keep patients out of the hospital. Thus, tragedies among this very vulnerable population are inevitable both in and out of hospitals.

Blaming the hospitals is the easy way out, and allows the mental health community to again dodge blame for the crisis we are now facing. The community providers aren't doing their part, and it is far past time to hold them accountable.

There are now more patients in fewer hospitals than 10 years ago. Community mental health must step up and do more for hospital patients than just take their money.”

Read more from Zdanowicz’s editorial published in the New Jeresy Star-Ledger.

A consumer on compliance

A riveting new blog by Robin Cunningham offers a compelling look at the issue of compliance ...

In all the incidents of non-compliance cited above, both voluntary and involuntary, the consequences were devastating. Within three or four days my symptoms returned with a vengeance, especially thought insertions, hallucinations, paranoia and delusions of grandeur. Within seven to ten days, I lost all insight, i.e., I no longer realized I was ill.

Remembering Kendra Webdale, her family and so many others

Eight years ago today, Kendra Webdale a vibrant, beautiful young woman was pushed to her death from a subway platform in New York City by a man with schizophrenia who had a documented history of assaults and failing to follow prescribed medication regimens.

At the time, advocates like DJ Jaffe had been working for at least 10 years in New York toward a statewide assisted outpatient treatment law. Kendra family’s commitment to prevent the tragedy of untreated mental illness coupled with Governor (then-Attorney General) Elliot Spitzer’s political will finally succeeded in achieving the reality of Kendra’s Law for assisted outpatient treatment in New York. All those who are being helped by Kendra's Law in New York today are indebted to the Webdales, particularly Kendra’s mother Pat, who continues to advocate and Chairs the AOT Quality Improvement Panel sponsored by New York’s OMH.
In addition to mourning Kendra, today is a day to remember some other random victims of the violence that is sometimes a result of untreated mental illness ... and the families who have, like the Webdales, opened their hearts to try to help others.

Edgar Rivera, who lost his legs after being pushed from a NY subway platform in April 1999, epitomized grace and understanding when he lamented that although he lost his legs, at least he had his mind, unlike his assailant. Linda Gregory partnered with Alice Petrie, the sister of the man who shot her husband in the line of duty as a sheriff’s deputy. Their successful advocacy lead to Florida’s adoption of AOT and they continue to advocate for more humane treatment. Amanda and Nick Wilcox’s daughter was killed at a mental health center in California by a man with untreated mental illness. They are fighting to get their county to adopt Laura’s law.

There are so many others, too many to mention here, but we particularly want to remember 11-year-old Gregory Katsnelson who was killed, while riding his bike, by a young man whose family was told he was not “dangerous” enough to be helped. Before he killed Gregory that day, he also killed his own mother. Gregory would be 15 years old now - the Katnselsons have spent the last 4 years trying to persuade New Jersey legislators to become the 43rd state to adopt an AOT law. The Senate, under the leadership of Governor Codey, passed the bill last year.

Our hope for the New Year is that the Katsnelsons will succeed as other families have in making a terrible tragedy into a legacy of hope for others ... and that better laws and better usage of and understanding of the laws that exist will mean fewer sad anniversaries like today.

Posted by TAC executive director Mary Zdanowicz.

NJ Law Journal: AOT is "a good first step"

New Jersey is currently one of only eight states without AOT. But there is hope - a bill sponsored by Senator Richard Codey passed the Senate unanimously in June and awaits action in the Assembly.

The push for reform in New Jersey has received widespread support from groups like law enforcement, hospitals, medical professionals, families, and now from the legal community.

The New Jersey Law Journal, America’s second oldest legal newspaper and one of the leading voices on legal issues in New Jersey, recently voiced its support for AOT in an editorial. Calling the program, “a good first step,” the Journal lamented the fact that treatment in New Jersey is currently limited solely to inpatient care, and only for individuals who’ve already evidenced danger to themselves or others.

"Societal priority": Intervening? Incarcerating?

Tom Davis, columnist for New Jersey's Bergen County Record, weighs in on Andrew Goldstein's sentencing.

Many people with mental illness can't get treatment unless they show they're a threat to themselves and to others, said Debra Wentz, who heads the New Jersey
Association of Mental Health Agencies.

And, even then, the treatment is questionable, she said."It really goes back to a societal priority -- what if that person was bleeding to death on the street? Would they help him then?" Wentz said. "To fail to treat a man who was delusional and paranoid and clearly ill -- it's a clear failure in the system."

- "Prison is no place for the ill," December 5, 2006

Sad anniversary

A mother on her son:

Jevon was diagnosed with bipolar manic depressive disorder on June 18, 2005. I was told it was an incurable mental illness. The diagnosis was unbelievable and overwhelming to discover. He had been healthy his entire life and did not believe he was ill. I sought help from the doctors at the hospital but was told he did not meet the commitment standard of dangerousness to self or others, so there was nothing they could do. I begged for help, insisting that something was terribly wrong. He did not believe what the doctors were saying. Every mother knows when something is wrong with their child. I could see it in his eyes; the emptiness, confusion and fear. He promised me he would be alright; it was a promise he couldn't keep. Thirty-one days later, [he] was dead.

Jevon Lampkins was 23 when he died. His case is not unusual, though we wish it were. His mother couldn’t get him help because of a weak treatment law. And like too many others, he died in an encounter with a law enforcement officer.

Our thoughts are with Jevon's family today. And with all the other families who are still trying to get help. Keep making noise.

NJ Senate votes today

The full New Jersey Senate will vote on SB 1093 TODAY at 2:00 pm. It is supported by grops like NAMI New Jersey, The New Jersey State Association of Chiefs of Police, and The New Jersey Psychiatric Association.

It was also recommended by The New Jersey Governor's Task Force on Mental Health. "The Task Force concluded that any comprehensive reform of a mental health system requires that the needs of the people with the most severe and persistent mental illnesses be addressed," said Task Force Chair Bob Davison."Our careful deliberations and extensive research led us to conclude that for those who are too ill to access mental health services, IOC strikes the appropriate balance of individual's well being and their constitutional liberties."

NJ hospital admissions and AOT

“Admissions and census levels at the state hospitals have remained at higher levels than would be preferred.”

That quote comes from the New Jersey Department of Human Services, responding to a question regarding the continually high census rates at state hospitals despite significant investments in community resources. Unfortunately, these investments havn't resulted in the sort of reductions the state anticipated. In fact, the total hospital census for FY 2006 is over 125 individuals higher than it was in FY 2001.

One factor that directly contributes to these numbers is New Jersey’s lack of an assisted outpatient treatment law. Without an effective means for ensuring that the most severely mentally ill maintain their treatment in the community, New Jersey’s most ill are allowed to cycle in and out of hospitals, jails, and the streets.

Data from the state shows just how drastic a problem New Jersey is facing. The Division of Mental Health Services reported that almost 10% of individuals between the ages of 18-64 admitted to a state hospital are readmitted within 30 days of discharge. The readmission rate jumps to 22% in the 6-month period following discharge. According to the New Jersey Office of Mgmt. & Budget, readmission rates are estimated to be as high as 35% at one of the state hospitals.

Fortunately, hope is on the horizon. Senator Richard Codey, with the support of groups like NAMI NJ, the NJ Psychiatric Association and the Governor’s Task Force on Mental Health, introduced SB 1093, a bill that would finally provide for an AOT law in New Jersey – and give hope to the most severely ill.

Support builds for NJ reform

“For New Jersey's mental-health reform to be truly comprehensive, we must reach those individuals who fall between the cracks,” notes Phil Lubitz, Director of Advocacy Programs for the New Jersey chapter of NAMI in a letter to the editor this week in the Philadelphia Inquirer.

New Jersey is one of only 8 states without the option for assisted outpatient treatment (AOT) – support from power players like acting Governor Codey and a recommendation for passage from the task force he created are a hopeful sign. Letters like this are another.