How can my loved one get inpatient care?

The above question is commonly raised by families seeking treatment for someone they love. Unfortunately, the reality of treatment in the United States is that care too often only comes once they’ve committed a crime.

A recent study in the journal of Psychiatric Services looked at the psychiatric and criminal histories of individuals in a large urban county jail and what psychiatric services they received while incarcerated. Their conclusion? One that is not at all surprising – a large percentage of persons with a severe mental illness receive their acute inpatient treatment in the criminal justice system rather than in the mental health system.

The study’s specifics are sadly familiar: 75% of the random sample were diagnosed as having a severe mental illness; 92% had a history of nonadherence to medications before their arrest; 95% had prior arrests.

These terrible statistics bring to mind the comments of the Bazelon Center’s Michael Allen, who recently pondered whether it was worse for a person with a severe mental illness to be in a psychiatric hospital or in prison.

Anosognosia: An Inconvenient Truth?

Mental health advocates who argue that court-ordered treatment is a violation of civil liberties conveniently disregard some scientific facts: severe mental illnesses are diseases of the brain, the very organ that allows us to reason and deliberate; some people with severe mental illnesses are affected to a degree that they are unable to make reasoned treatment decisions for themselves; anosognosia also occurs in some some individuals with strokes, brain tumors, Alzheimer’s disease, and Huntington’s diseases; that this “lack of insight” is a major cause of refusal to take medication; and, that medication can benefit many patients with schizophrenia and bipolar disorder.

Take the Bazelon Center for example. In their blanket opposition to assisted outpatient treatment, they summarily dismiss the science of anosognosia by referring to it as a, “…supposed "lack of insight" on the part of the individual, which is often no more than disagreement with the treating professional…”

There are now more than 100 studies documenting “lack of insight” in individuals with severe mental illnesses. How much longer will treatment opponents ignore the research and continue to make the same uninformed arguments?

Mental health courts and mental health "advocates"

Mental health courts (highlighted this week in the Wall Street Journal and on NPR’s All Things Considered) have been popping up with more and more frequency around the country as the nation struggles to find ways to minimize the number of people with mental illnesses who land in jails and prisons. They are designed to get treatment for those who might otherwise land behind bars, and possibly help them regain their lives. The emerging research and anecdotal evidence to date is that they work exceptionally well for certain people.

And yet.

“If that’s the way you access services for individuals,” said a Bazelon Center spokesperson on NPR, “you are going to encourage arrest.”

Hello? This is already happening in communities without mental health courts. At TAC we often hear from families who are told by mental health professionals that the only way to get help is to have their loved one arrested. This is a practice that started long before mental health courts were conceived.

Bazelon’s website says “court-based diversion … is not a panacea.” Well of course not! It’s time to come down from the ivory tower and face reality.

What is needed is a broad spectrum of options that can be tailored to individual needs and address real problems. Does Bazelon mean to wait for perfect mental health systems to materialize before helping real people who are currently suffering? Realistic reform targets real improvements, and mental health advocates should get on board and stop trying to marginalize tools like mental health courts and AOT – proven in study after study to make dramatic changes in quality of life for those suffering.

Bazelon’s knee-jerk rhetoric does suggest a more subtle and helpful message. There is no panacea. It would be a mistake to think that mental health courts are the answer to all of our problems. In fact, it might cause more people to turn to the criminal justice system for treatment. But, the reality is that too many people are there already because the mental health system is failing them.

What is also needed is a focus on shifting the responsibility for caring for the most difficult patients back to the mental health system. One proven means of doing so is assisted outpatient treatment. It is not a panacea either. But, the Wall Street Journal article demonstrates why it is so important. Harry Rivera, who did so well for five years under the criminal court supervision, was back in jail only six weeks after he was returned to the mental health system. Assisted outpatient treatment can do what the mental health court did for Mr. Rivera - before he ends up back in jail.

Perhaps there is another benefit to mental health courts – they can teach the mental health system how to help the most severely mentally ill.

Your tax dollars and hospital closures ...

"Deinstitutionalization is a thing of the past" – at least that is what most people think.

But, in fact, psychiatric hospital closures have proceeded at a furious pace over the last 15 years. There were so few beds when this new assault started that the people who remain in institutions are those who really need intensive care. Some can be “integrated” with sufficient support, but for others, life becomes a living hell once they are “freed.”

There are many factors driving the closures, but the most egregious is that the very groups that are paid by the federal government to “protect” the mentally ill, Protection and Advocacy (P&As) are the ones forcing many of the closures.

And when the doors are closed, the displaced residents are on their own.

In his book Crazy, Pete Earley investigates the tragic life and death of Deidra Sanbourne, the named plaintiff in the Florida P&A 1988 suit to close a hospitals (pg. 108 – 207).

The Bazelon Center, another group heavily funded by the federal government, joins many of these suits … and they aren’t satisfied with closing hospitals. In New York, Bazelon brought a suit to close boarding homes. In Connecticut, Bazelon brought a suit to get the mentally ill out of nursing homes. Where do they expect seriously ill people to live?

One need only read about M., who was placed in his own apartment when Harrisburg State Hospital closed. The P&A was nowhere to be found when M. ended up lying on a sidewalk – he was scared of his apartment.

For years, these federally funded “advocates” have imposed their own values on people who don’t have the resources to live independently. Rather than advocating to improve conditions in hospitals, boarding homes, and nursing facilities – they try to close them down.

Big Pharma and advocacy groups

The Philadelphia Inquirer published a news story last week that revealed the dangers of mental health advocacy groups accepting funding from pharmaceutical companies. (“Donations tie drug firms and nonprofits: Many patient groups reveal few, if any, details on relationships with pharmaceutical donors,” May 28, 2006).

Although patients seldom know it, many patient groups and drug companies maintain close, multimillion-dollar relationships while disclosing limited or no details about the ties.

At a time when people are making more of their own health-care decisions, such coziness raises questions about the impartiality of groups that patients trust for unbiased information. It also poses a challenge for groups trying to hold patients' trust and still raise money to serve them.

An Inquirer examination of six groups, each a leading advocate for patients in a disease area, found that the groups rarely disclose such ties when commenting or lobbying about donors' drugs. They also tend to be slower to publicize treatment problems than breakthroughs. And few openly questioned drug prices.

The Inquirer singled out NAMI in the field of mental health. But pharmaceutical company funding is also flowing into the National Mental Health Association (see page 12 of their annual report) and Bazelon Center for Mental Health (see page 18 of their annual report).

TAC is sometimes wrongly accused of accepting money from pharmaceutical companies, but we have had a policy since we first opened our doors that we will not accept such funding. That certainly makes fundraising more difficult, but it is our policy. TAC operates on a modest budget for a national organization, but our lean and mean approach has resulted in many successes.

We agree that additional regulation is not necessary – whether or not to accept pharmaceutical funding is a decision that individual organizations should make. But, the pitfalls are great when there is not adequate transparency or independence.

And many patients expressed surprise at the ties [between big Pharma and advocacy groups]. "I don't think that would make a difference as far as taking a drug," said Gloria Antonucci, 65, leader of a Montgomery County pain-support group that relies on Arthritis Foundation advice. "But I think it would make me, maybe, 250 percent more skeptical about what the group is saying."