Tuesday, April 21, 2009

Demise of the Medical Model of Mental Health Care

The revolution that people foresee coming to mental health care in New York State carries risks and challenges. For some, it means the end of the medical model of care, with doctors, hospitals and medicine being tossed aside where possible. For others a transformation to patient self-directed care, independent living and people gaining greater control over their lives represents a “great leap forward” in mental health.

The US Surgeon General sounded the death knell for the old system a decade ago, summing it up like this: “So the medical model, primarily focusing on symptom relief, passes in favor of recovery, which casts a much wider spotlight on restoration of self-esteem and identity and on attaining meaningful roles in society.”

The demise of the medical model follows on the heels of events that shook up the world of psychiatry in the past decade.

In the past few years we've seen evidence of culpability of state hospital directors and their staffs who expelled thousands of sick, mostly elderly patients from the big state hospitals on Long Island to crummy nursing homes and adult homes in Brooklyn, Queens, New Jersey and elsewhere.

Later came revelations that leading psychiatrists and researchers around the country including those we regularly invited to our NAMI conferences for truth and inspiration were in cahoots with the drug companies and peddled their products unashamedly. That whole world came crashing down in which we had trusted those at the top of the medical profession to explain the mysteries of these powerful diseases crippling the minds of our sons and daughters, husbands and wives.

And there came revelations about over-drugging children who couldn't learn in school and disturbed their teachers and classmates. Doctors firmly believed that pills were the only effective route to behavioral change. This came with the pharmaceutical revolution in psychiatry where most doctors now prescribed medicines for every kind of emotional and mental ailment and relegated counseling, known as “talk therapy,” to a second rung. Only later did we realize that a combination of the two--medicine and counseling--proved the best treatment approach.

Then came startling results from a top level study group, the President's Freedom Commission in 2002-03, that found that the nation's system of mental health care was a flop, costly and ill-achieving. Too many sufferers were not getting any care at all while others lacked access to housing, hospitals and outpatient facilities. Children with emotional problems were particularly limited, with a severe shortage of child psychiatrists and confusion about how to treat children's rampantly wild behavior in the classroom.

And a follow-up study reported that newer brands of anti-schizophrenia drugs, like Risperdal and Zyprexa, called “atypicals,” were no better than older drugs that had been discarded, like Haldol and Prolixin, in treatment of the most severe mental illnesses. The newer drugs couldn't be distinguished from the older ones in efficacy even though the new drugs cost several times more and were now being prescribed almost exclusively to more and more sufferers.

That gave rise to the suspicion that doctors were prescribing the same drugs the companies were paying them to promote in professional journals, at conferences and in company advertising. We read that doctors had to resign from prestigious positions with these journals and others lost their university standing as a result of exposes of tie-ins and payoffs from pharmaceutical companies.

Finally, Rising Costs and Public Disaffection

Meanwhile, the nation began feeling the high costs of mental health care, associated with not only drug prices but a growing frequency of emergency room visits and hospital stays by people facing mental crises. A small segment of this population took up the lion's share of psychiatric beds and ran up huge bills. Lawmakers grew angry at these failures in treatment and began to question the mental health industry.

Too often, the mentally ill were associated with violent acts in the news media. Calls have come from some in the field to lock up persons who can't live safely in the community with others. Such violence has antagonized the public against the mass of innocent sufferers.

Those entities paying the bill--insurance companies and state, federal and local governments--found the combined medical and mental health costs of these patients were rising faster than for any other group of patients, and they had to do something. Companies fought for years to eliminate any mental health insurance coverage in employer health plans or make it inferior to other coverage. Only recently have parity insurance bills passed in most states and at the national level.

The state has converted most of its programs to Medicaid to reduce its own spending, which has limited the ability of doctors and other practitioners to bill for services. It has also frustrated many with an overload of recordkeeping forms and payment delays. For these reasons and the fact that psychiatrists are now devoted to dispensing pills, fewer new recruits are being trained. Those who practice talk-centered therapies based on analysis have lost respect.

With the economy reeling in 2008 and -09, hospitals have closed psychiatric beds and counties have slashed community mental health budgets. The result has been growing numbers of young and disaffected men and women in jail or left homeless in our cities with their mental health needs largely unattended to. Jails have become the stopping place for those who can't get treatment in hospitals and community care.

The system appears to be coming apart. New York State's mental health commissioner, Michael Hogan, wants to move away from hospital and other institutional care to more services in the community. He would look for alternatives to the traditional doctor-medical delivery system by reforming the roles professionals play and creating incentives for better performance. His is the last word while the system struggles to redeem itself from a decade of indecision, false promises and backward steps. (Roy Neville)

Wednesday, April 15, 2009

Fighting the Good Fight

How Disability Advocates, Inc. Racks Up Wins for Mental Health Consumers and Families

Disability Advocates, Inc. is a public interest law firm in Albany, one of six in the state set up by Congress in 1991under the Protection and Advocacy for Individuals with Mental Illness law.
It's a kind of secret weapon for mental health consumers and their families, while keeping a low profile.
There are half a dozen lawyers manning the Albany office (at least three are women), sitting a floor above a famous eatery, McGeary's, just across from the Palace Theater, downtown. They serve a 16 county area, a regional legal resource for seriously mentally ill people. They will offer assistance to individuals and represent them in court, and on a broad scale they press litigation statewide in cases involving the civil rights of these folks.
In one of these cases, the office made news recently by winning a challenge to go to trial against NY State in a lawsuit involving residents of adult homes in New York City. Cliff Zucker, executive director of the agency, says he thinks the case is strong, alleging that the state violates the Americans with Disabilities Act by unlawfully segregating these residents from better housing they might have in the city.
The suit aims to force the state to end discrimination against the residents in these often decrepit buildings, impacted with mentally ill residents illegally sent there from state psychiatric hospitals. The charge is that the state is not finding other homes and apartments for them where they might receive more financial and other assistance. Zucker said he is preparing for trial May 11.
The nearly six-year-old lawsuit follows years of reports about horrific conditions for older and weaker residents in the homes. In 2002 an investigation by the NY Times of 26 adult homes revealed numerous deficiencies over patient safety, medical and money management and other shortcomings.
The federal judge noted in his decision that the state had failed to implement the recommendations of an adult home work group convened by former governor George Pataki to develop a timetable to move 6,000 adult home residents to alternative housing.
How did so many mentally ill residents wind up in these flea bags? we wondered back then. It turns out the state Office of Mental Health put one over on the advocates by keeping secret the mass move-out of state hospital patients to nursing homes in Brooklyn, New Jersey and Massachusetts in the 1990s.
We didn't know this was happening while we applauded the annual rundown in patient census at the big state hospitals on Long Island. The Office of Mental Health was shipping out patients who were costing the state more than twice the amount they would in these nursing homes. Medicaid paid the bill in nursing homes and adult homes but not in the OMH hospitals. The tragedy was the homes took the people in without always having staff and facilities to care for them, and the people were really sick.
This decision was the latest in a string of successes in court by Disability Advocates. Last year Zucker's firm won a lawsuit against the state for failing to honor a ruling in the Gowanda case back in the 1990s that forbade state hospital directors from taking the monthly social security checks of patients. They were using the money to pay their hospital charges instead of saving the money aside according to the patients' wishes. And now Governor David Paterson tried to restore the same practice by the hospital directors in a bill of his own but the legislature didn't buy it and refused to allow it.
Before that the PAIMI office and other law firms settled a five-year-old suit in trial in federal court against the state Department of Correctional Services and Office of Mental Health that led to the “SHU law”. It called for reforming the practice of putting mentally ill prisoners in solitary confinement 23 hours a day and instead putting them in treatment housing, training officers and changing hours of confinement. This ruling coincided with passage of the prisons' special housing law last year but it has not yet been implemented.
Disability Advocates won another suit in 2003 to have the OMH change its regulations so that residents in licensed community residences wouldn't be summarily forced to move out of them. These evictions, which Zucker's office claimed were violations of due process and equal protection of law, gave residents the right to challenge them and appeal an adverse decision. Housing sponsors still have the right to force someone out, however.
In the 1990s there were more court victories--over the state's termination of special education services for home-schooled children, over halting the state's practice of forcibly administering psychiatric medicine to non-dangerous patients; and another to stop the state from placing individuals judged incompetent in court in psychiatric hospitals, without regard to their dangerousness.
Zucker's office is sometimes confused with the state's Mental Hygiene Legal Services, which works out of the Appellate Courts and assists patients in the Capital District Psychiatric Center. Disabilities Advocates, on the other hand, represents seriously mentally ill people wherever they live—opposing, for example, the operators of nursing homes, adult homes and mental health community residences as well as private landlords and employers.
For these reasons the agency isn't always popular. It has a record of opposing parents and other close relatives of someone mentally ill who challenges them in court, too. There was a time when the PAIMI lawyers seemed too willing to take on cases against families when we tried to intervene in privacy matters over hospital or medical records involving our adult children. NAMI NYS board members didn't like them on the other side of t he fence.
But this doesn't happen much anymore, Zucker said. He thinks the families and his office are often in agreement with one another in cases about better housing and job rights and protections for disabled people. He sees our two groups working together harmoniously from here on out. Times have changed!
(Roy Neville)

Tuesday, April 14, 2009

The Radical Revolution That Didn't Occur

Looking Back to the 1990s When AMI Was a Real Advocate

Almost every year in the 1990s NAMI NYS organized rallies and demonstrations in Albany. We did it with our friends from NYAPRS and the Mental Health Association and housing groups comprising the mental health action network. Our rallies at the Capitol came in the winter and spring when the legislature was fooling with the governor's budget cuts and didn't act on the bills we wanted
We had the famous demonstrations in 1991 when we put hospital beds in the street alongside the Capitol and blocked State Street for part of an hour. And in 1993, I think it was, we built homemade wooden jail cages and set them up on the Capitol lawn to oppose the imprisonment of mentally ill people. Another year we let loose a cloud of green balloons over the Capitol.
The late winter rallies were sometimes accompanied by a hail of snowflakes. Some of us stood in ice and slush on the massive steps. The crowd wore overcoats with their collars turned up. They included old people, the loyalists who had started the AMI family movement in the 1980s and kept coming back
We had the energy and enthusiasm to do it. We screamed our lungs out and hugged one another. One year a young man played music on a keyboard in a cold that nearly froze his fingers. And a young woman who sang like a nightingale led us another time. Our speeches drew rounds of applause.
AMI people would remember. It was all so grand. For those of us most enthusiastic through the 1990s, something happened after that—we just got older or tired of the annual go-around without success, or the economy soured and people's jobs got cut back, or it was simply all over.
I don't know which of these mattered most, but the fight isn't there anymore for the families of the mentally ill to go over to Albany and kick and scream the way they did in the past. New regimes have replaced the earlier ones in the NAMI NYS office. It will take a new generation.
The state government had hit hard times by the end of the decade and everything was trimmed back. We forget that those years were almost as tough economically as now and state mental health budgets suffered the same way
1996 was a year when things apparently weren't going well. We called a rally on the Capitol east steps later than usual. On May 7 abut 200 of us gathered at the base of the huge promenade while our leaders harangued the crowd. Our shouts resounded around the Capitol grounds and routed out the state workers. I still have the notes from a blustery speech I gave that day:
“We're here to raise hell about the budget” I bellowed over the bullhorn. “How bad is the governor's budget for mental health? It's like toilet water—smells good and it's cheap.
“Community mental health is at a cross roads—no more new housing, no new reinvestment, limited Medicaid, block grants to the counties.
“He's got us on the run. He's Wily Coyote. He's Jimmy Hoffa—he's cutting our legs out from under us.
“Tell those wieners in the legislature, tell those bean counting bureaucrats—we won't stand for these cuts,” I screamed and they roared back
At the end we sang religious songs like “Amazing Grace” and “We Shall Overcome”. That's what it was like—a religious aura swept over us to beseech the governor to make life a little easier for our loved ones with serious mental illness.
And then we got our leaders together after more than an hour and told everybody we were going to march around the Capitol and really let them hear us. We massed at the foot of the steps with our leaders out front with the bullhorns and the chants started, with the crowd yelling back without stopping, all the way down the line in an unending roar.
As we marched around the building we felt our chanting could penetrate inside to the governor's office and anybody else who might listen. “Keep the promise of community mental health,” we repeated until we were hoarse.
After it broke up we went indoors to see if we could meet with somebody on the governor's staff because you don't ever meet with the governor himself. We did and we got a message to him that laid out what we were there for. Then we went outside and felt good.
We were just ordinary people who thought demonstrations like this were important. We found the energy and excitement. After the 1990s we didn't play it up so much any more
Every year in the 1990s it seemed, we fought to restore the cuts Governor Pataki and his aides put into the mental health budgets. They were slow to open new housing, new community programs, while cutting back on state hospital beds. Any changes came slowly and grudgingly and I think we fought for them tooth and nail. But the big lobbies like those for state school aid, the unions, the hospitals and nursing homes, and colleges and universities walked off with the money. The governor and most of the lawmakers never thought enough of mental illness to give it the attention it deserved.
There were high points in our struggles, gains in numbers of new apartment beds, funding for community services, employment supports, children's programs and crisis services. The best of these dried up at the end of the 1990s,when the going got tougher and the state bowed out of paying most of the bill on its own. The state shifted everything possible to Medicaid so the feds would pay at least half of what the state was paying previously.
Too much of the mental health budget still went to maintain a vast network of state hospitals which robbed the rest of the system from making headway. The best program of the era was called Reinvestment and it would disappear, too. Our effort to get mentally ill people more housing, jobs, transportation, clinic help, case managers and peer support seems old fashioned now.
Our slogan: “Keep the promise of community mental health” has been transformed, the new commissioner might say. He would reform outpatient mental health by improving clinic care and yet he would reduce continuing treatment programs, which we believed in. We stuck to the medical model that relied on doctors, medicine and hospital beds, but these are now downplayed.
After the end of the 1990s we lacked the spine to keep it up. We called fewer rallies and let other groups, like NYAPRS, run the show. Why did that happen? Did we grow too old? Did those politicians on the hill finally crush our morale?
(Roy Neville)

Sunday, April 12, 2009

How HIPAA patient privacy laws block up the system and keep the stigma alive

Should families still get access to information about their loved ones even if it is held confidential?

Federal HIPAA laws, once they were instituted in 2003, joined the existing NY State Mental Hygiene Law to protect the confidentiality of treatment records of mental health clients and patients. The two laws overlap one another, with the stricter (most confining) of the two applying to the particular case where there is a challenge or disputed authority, we are told.
HIPAA stands for the Health Insurance Portability and Accountability Act regulations of 2003 and covers all health care procedures and health plans while the state law's confidentialty requirements apply to clinical records alone.
These rules have caused a helluva lot of trouble. Providers like hospitals and housing agencies dare not slip up in this regard—penalties are severe for violations of the statutes. A doctor or social worker or facility manager can lose his license or lose his job by playing loose with HIPAA regulations. And to avoid having this happen, nearly everyone in the field except maybe the Ellis groundskeeper knows you keep things secret and you don't ask direct questions about someone's mental illness without a sharp rebuff.
The hospitals and clinics, even the consumer social club in Schenectady trumpet “patient confidentiality” whenever anyone tries to get information about a client of theirs. The laws have become so all-encompassing and so conservatively applied that one view is that the agencies are protecting themselves more than the clients they serve by reciting HIPAA law's protections
When it comes to clinical treatment, HIPAA laws do not let family members of adult patients obtain information that their relative does not consent to. The patient or client has the right to agree or object to disclosure to family members or those involved in their case, according to a handbook for patients, families, providers and others published by the NYS Office of Mental Health and found on its website.
This is confusing to family members who genuinely want to help their loved one in his or her recovery, the guide points out, and families agree. Relatives of family members with mental illness have told others at the local support and education group meetings how exasperated they were to be denied information as basic as whether their son or daughter was admitted as a patient at Ellis.
A few years ago a Schenectady father was hunting his missing mentally ill son after it was reported to police in Albany the man was hurt in a fight on the street. Both CDPC and Ellis Hospital wouldn't say if he was hospitalized there. Later, after a long and agonizing search throughout neighborhoods, to former addresses, the City Mission and two jail houses, his son was found—and he had been a patient at CDPC at the time of the inquiry. And more recently a Scotia man who was arrested on assault charges absconded from his home and drove his car away, left the car at the airport and disappeared. He was found months later when a police officer in a Georgia jail finally called his parents back here about the missing man with mental illness in their lockup
Why the extreme secrecy? Local mental health housing sponsor Mohawk Opportunities asks new residents to list names of those to be contacted for routine communications and in emergencies. If he or she fails to fill in the blanks on the form, in the past the agency has told us it will not notify parents that their relative lives there, if questioned about it. The staff is instructed, however, to suggest that the resident review his or her decision as time goes by
The guidelines say providers are legally obligated to honor the wishes of a patient who withholds permission to make disclosure to family members. In the case of a minor child who is not in legal custody of his parent or guardian, only the county Social Services department is authorized to receive disclosures. The whole idea of such arms-length protection would seem to be that these are very vulnerable people who we have run roughshod over the in the past and we can't let it continue to happen. By hiding identities, mentally ill adults and children cannot as easily become the victims of other people's bullying, shaming and lying about the true nature of mental illness.
Instead of this, hasn't the secrecy behind the HIPAA laws perpetuated the stigma and shame that we don't want to acknowledge about our mentally ill relatives? We are forty years into the modern era of mental health treatment based on science and medicine and we can't openly share information about those with no-fault diseases?
With privacy laws, the agencies can curtail any speech about this person at all, not just clinical information that might compromise his or her rights to privacy. As a result, the secrecy surrounding where these people are and what they're being treated for is bad. The laws should be changed to allow good sense to prevail.
And one thing more. I'm convinced that research into behaviors of mentally ill patients and prisoners can't go on because of the hurdles placed in the way of open access to treatment records, set up by the HIPAA laws. Throughout the nation we have bands of tidy watchkeepers called institutional review boards who must review every research project involving these people. These board members are spirited to block every bit of research they can if it reveals the slightest disclosure of the individuals who are subjects. As a result very little sociological research is done on populations that are normally used for this purpose and the quality of research has suffered, too.
Wouldn't it be better to unfreeze some of these rules and let people do the research work that helps us better understand prisoner or patient behaviors? No one's willing to open the bottle to let ideas flow, so we all remain blind to many aspects about mental illness and behavior. (Roy Neville)

Saturday, April 11, 2009

The Ratings Game—How Do NY State's Mental Health Programs Rate a B?

There's good and bad in the latest NAMI national report

NY State Office of Mental Health gets a B grade from national NAMI for its operation of the mental health system in this state, and that's quite an uptick above the U it received three years ago, for “unresponsive, “ the last time the poll was taken. (see state report card for New York on nami.org website).
NAMI was most generous to award New York a B, considering its average grade awarded nationally was a D, and NAMI had to qualify its remarks about our state by saying:“Despite this high grade, all is not perfect. New York has many strengths, but it also has many problems.”
The NY State mental health commissioner, Michael Hogan, agreed, noting that “While we are gratified by a relatively good rating, we have a long way to go. The report recognizes the progress we are making in NYS to better support recovery from mental illness, but its criticism of our shortcomings is pretty accurate in my view.”
That comes with the territory. The OMH is a vast outfit with a $2.6 billion annual budget and many thousands of employees stretched over a network of state OMH hospitals and other facilities and involving some 2,500 local government and not for profit contracting agencies. It's governed by federal rules for much of its spending like Medicaid and the funding is managed by the state Health Department to a large degree. The Office of Mental Health plays second fiddle to Corrections when it comes to mental health treatment of state prisoners and it must follow Criminal Justice law and regulations for services to inmates of city and county jails.
The way that NAMI collects this data is to send a bunch of forms to the agency itself and ask it to rate itself. Then there are others to corroborate or challenge what is returned on the forms. Somehow the NAMI wits mesh this all together and come up with a report card and a grade from a thousand miles away—so you can take these surveys for what they're worth.
Even with the fairest of survey documents you might find reports like these don't tell much about the quality of the service afforded and the kind of people in charge and the net effect on the main constituents—those individuals with mental illness in all their troubled behaviors, and their families who suffer with them.
Strengths and weaknesses of our state's mental health system are pointed out in the survey. But first, an opinion: The biggest failing of this study is NAMI's missing the boat on the way New York's mental health system is skewed like no other state to put major resources into some 26 state hospitals (17 for adults, three adult forensic, and six for children). These and the main office take over 50 percent of the budget to serve some 4,000 people, while the other half of the pie is meant to cover over 500,000 children and adults served by the agency who live in our communities with all kinds of problems, from schizophrenia to gambling, suicide risks and sex offenses.
“The OMH has emphasized support for evidence-based practices,” the report begins. “Seventy-seven Assertive Community Treatment (ACT) teams exist throughout the state (one in Schenectady). OMH also funds supported employment, peer counseling, peer education and consumer-run programs.
“Placement of large numbers of consumers in substandard adult care homes has been the subject of ongoing litigation. OMH is working to assist adult home residents to move into community-based housing linked with supportive services.” (see later article on Disability Advocates and adult homes)
“New York is also investing in housing,” it asserts. “A recently signed agreement between New York City and the state, 'New York/New York III,' commits combined state and city resources to develop 9,000 housing units over 10 years. The Pathways to Housing “Housing First” model has become internationally recognized. Despite these initiatives, lack of housing is still a very serious problem.”
Most of us would agree. The shortages seem to be getting worse each year as the numbers of people waiting for apartments and group homes outpace the publicly subsidized units added to the housing stock. People live in substandard housing in the wrong neighborhoods and many of the state's homeless population are mentally ill. While the state office pledges to open thousands more beds each year, it is still clearing a backlog of previous years out of the pipeline.'
“In 2007, the report continues, “New York finally enacted Timothy's Law, after a battle to achieve mental health insurance parity” (yes, it took 20 years from conception to passage) and the law still is not permanent, is up for grabs this year.
“In 2008, another important development was enactment of a law to limit segregation of prisoners with serious mental illnesses and instead provide them with treatment.” That's the SHU law (prison special housing, called “the box,” for mentally ill people and others) that won't be put into effect till 2011. Only last month a proposal to delay this three more years was defeated but it shows you how opposition remains to something as humane as this prison reform
“Kendra's Law, which authorizes involuntary assisted outpatient treatment, has resulted in fewer hospitalizations and arrests, as well as new investments in mental health services and supports,” the survey finds. True, New York's law has become a model for many other states
“Deficiencies exist, including severe shortages of acute care psychiatric beds and crisis stabilization programs. Confronted with dual problems of inadequate reimbursement rates and staff shortages, a number of community hospitals have recently downsized or closed psychiatric treatment units. Predictably, emergency rooms are overwhelmed with individuals in crisis with no available treatment beds.” This is worse than the situation we find at Ellis Hospital in Schenectady but psych beds have closed at Albany Med and elsewhere in the region.
'”New York is surprisingly far behind many other states in developing partnerships between law enforcement and the mental health system. Only two police Crisis Intervention Team (CIT) programs currently exist.” But these take money and you need a fair sized city to support them
“In 2009, New York's economic challenges cloud the horizon. Financial collapse on Wall Street and the recession have resulted in a $15.4 billion deficit, the largest in the state's history. Many consumers and families fear the economic squeeze could negate progress made in recent years.
“New York has potential to become one of the national leaders in public mental health care.” However, the report concludes, “budget cuts, retreats, or delays in improving services will signal a faltering commitment to evidence-based, cost-effective transformation, and recovery. The next few years will be vital in setting the state's course for the future.”
The survey writers might tell this to Commissioner Hogan, who's dead-set to reform the delivery and funding of services. Time will tell if the B grade turns itself into an A or a D next time around. Here are some family and consumer comments that came with the report:
--”Emergency rooms at hospitals...It's like a nightmare and ignorance prevails with staff”
--”No help from law enforcement agency or mental health system unless something bad happens”
--”Most of the providers are dedicated and very caring”
--”We need more housing that is safe and where they dispense the medication.”
(Roy Neville)