Health Association in New York State, Inc.
Friday Fax from Albany
Life With Schizophrenia: On Monday, MHANYS was host to a unique event, Burdens of Schizophrenia, Barriers to Care, at which nearly 100 people were able to learn about schizophrenia and to experience, firsthand, what life with schizophrenia is like through the Virtual Hallucination Machine.
Hosted by Assembly Mental Health Committee Chair Peter Rivera, Legislators and their staff, those who work in the criminal justice system, members of the media, and others were addressed by Dr. John Docherty and Daniel Frey, who each spoke about their perspective on schizophrenia.
Dr. Docherty, Chief Executive Officer and President of Comprehensive NeuroScience, Inc. in White Plains, spoke about the clinical aspects of schizophrenia and about how treatment for the illness works. Mr. Frey, Editor-in-Chief of New York City Voices: A Consumer Journal for Mental Health Advocacy, followed up Dr. Docherty’s clinical comments with a summary of his life, living with schizophrenia, both before and after he found effective treatment.
After the presentations, everyone was invited to experience the Virtual Hallucination Machine. Consisting of two different scenarios, the virtual-reality program takes you on a bus ride to the pharmacy so that you can fill a prescription for your schizophrenia medication. During the bus ride, you experience a confusing chain of events that leave your disoriented by the end of the ride, and the bus driver trying to get your attention, saying, “This your stop, isn’t buddy?” The second scenario finds you in the grocery store, trying to find the pharmacy to get your prescription filled. Once you finally reach the pharmacy, the virtual-reality technology allows you to control your point of view by pivoting and swiveling to “view” the different sights and sounds that appear around you.
Mr. Frey spoke with many who attended after their virtual experience. As a consultant during the development of the machines, Mr. Frey can attest to the accuracy of the experience. After many people finished the experience, Mr. Frey told many of them, “Just imagine not being able to take the goggles and headphones off…”
MHANYS’ Flyer: No More Baloney! It’s Time to Pass Timothy’s Law!: You can also download this flyer as a PDF file
No Matter How You Slice It, It’s Still Baloney!
Health Plan Association (HPA) says that Timothy’s Law will result
in unlimited coverage.
HPA says the passage of Timothy’s Law will make health insurance
HPA says small employers will drop insurance coverage if Timothy’s
What Isn’t Baloney?
The PricewaterhouseCoopers study completed on Timothy’s Law says the cost of parity would be $1.26/ person/ month. That study is in line with the studies and experience in every other state, as well as the Federal Employees Health Benefit Program.
80% of New Yorkers support the passage of Timothy’s Law, and would be willing to pay the $1.26 themselves.
Millions of state tax dollars could be saved in Medicaid and other government programs through the passage of Timothy’s Law as part of 2004-05 NYS budget.
No more baloney! It’s time to pass Timothy’s Law!!!
For more information on the truth behind Timothy’s Law, please visit www.mhanys.org/timothyslaw.
On March 16, 2001, Timothy O’Clair, a 12-year-old in Schenectady, hung himself. His parents point out that a major factor in their son’s death was the inadequate insurance coverage for treatment of his mental illness.
Inadequate coverage is unfortunately the norm: It is estimated that well over 90 percent of private health insurance plans discriminate against persons with mental illness and substance abuse disorders by requiring higher co-payments, allowing fewer outpatient visits and days in the hospital and setting higher deductibles than for other illnesses. This discrimination results from misconceptions and outmoded, unscientific thinking and is part of the stigma faced by people with mental illness and their families.
Mental illness and substance use disorders are real and disabling illnesses. A large study of diabetes, hypertension, heart disease, lung diseases, arthritis and depression found that only severe heart disease was associated with more disability and impaired daily functioning than depression.
The cost to our economy for untreated and undertreated mental illness and substance use disorders is staggering. The National Institute of Mental Health estimates that the annual cost of untreated mental illness exceeds $300 billion, largely due to lost productivity and other societal costs. A 1999 surgeon general’s report estimated that the direct business costs of the lack of parity for mental health coverage was at least $70 billion per year in the form of lost productivity and increased use of sick leave.
These illnesses can be reliably diagnosed and treatment works. Great advances have been made in the development of criteria-based diagnoses of mental illnesses. Much evidence has emerged supporting specific treatments and clear practice guidelines have been developed. Several years ago a landmark NIMH study found that efficacy rates for the treatment of severe mental disorders ranged from 60 percent to 80 percent, exceeding the efficacy rates for many other treatments in medicine.
Nondiscriminatory (parity) coverage of mental illness and substance use disorders is not only affordable, it would save money. In a 1993 report to Congress, the National Mental Health Advisory Council estimated that parity coverage for mental illness would result in more treatment and a net savings of $2.2 billion per year, largely in costs incurred in the general health care system and society at large.
A few years ago, The Wall Street Journal reported that a “four-year study of program effectiveness (good access to mental health services) at McDonnell Douglas yielded a four-to-one return on investment after considering medical claims, absenteeism and turnover.”
States that have enacted nondiscriminatory coverage have found the resulting increase in health insurance premiums to be relatively small. An actuarial analysis by Pricewaterhouse Coopers, L.L.P. of “Timothy’s Law,” now being considered by the New York State Legislature, concluded that the expected employer health care costs for this nondiscriminatory health care coverage would rise about 0.8 percent or $1.26 per member per month.
Most importantly, nondiscriminatory health coverage is not only the smart thing to do; it is the right thing to do. No matter the form, discrimination is wrong. It makes no sense that the insurance coverage of the treatment of the brain disorders identified as mental illnesses should be significantly less than the coverage of other illnesses.
Thirty-five states have now enacted parity laws with varying approaches to prohibit discrimination in insurance coverage of mental illness. Unfortunately, New York state is not one of them. On the national scene, two years ago, President Bush added his support for nondiscriminatory health care coverage, and there is strong bipartisan support for a national parity bill that Congress is now considering.
On March 16, the New York State Assembly passed Timothy’s Law by 131-10. The fight for parity in New York is now in the Senate. More senators have co-sponsored the bill than are needed for passage, but the Senate leadership has kept the bill off the floor.
The Senate should pass Timothy’s Law and end this discrimination against persons with mental illness and their families. The time is now.
McIntyre is chairman of the Department of Psychiatry and Behavioral Health, Unity Health System, and past president, American Psychiatric Association.
for a place called home. By Kate Gurnett
For many New Yorkers, the passages and possessions of life -- a lease, a job, a family -- are blocked by mental illness
When Matthew Mazoway saw ants crawling in his Troy apartment, he called his landlord over and over and over. He called so much the landlord began to wonder if the bugs were in his head. Incidents like this often complicate housing for many people with mental illness -- people like Mazoway, 26, and his fiancee, Donna DeMaria, 28.
Advocates for those with mental disorders say they do better in their own places. But finding a permanent residence can become a real-life odyssey rife with missteps. Matt and Donna face a daily question: Can the mentally ill ever go home again?
The wait can be long. Tens of thousands of New York residents suffer mental disabilities that make it hard to negotiate a lease, talk to or avoid neighbors, keep a job, even shop for groceries.
Willing landlords are few and far between, despite rent subsidies. To them, mental illness spells junkies in the hallway or a screaming match over cracked ceilings. Evictions are common. Many mentally ill tenants have a history of homelessness. Many have been addicted, abused or suicidal. But the idea of home won't relent. Each day they struggle, backed by case managers, peer counselors and staff, to find permanent refuge and launch a better life.
Here is one couple's story. "Take another," Matt Mazoway told his girlfriend, Donna, when the home pregnancy test results were positive. She did. Positive. "Take another test." Matt's obsessiveness had clasped onto the test. He would not let go.
This was not a good time for Matt and Donna. He'd had an epileptic seizure at work, been fired and had moved to a motel. His bipolar disorder sometimes prompted paranoia. Also known as manic-depressive illness, bipolar disorder causes severe shifts in mood, energy and the ability to function.
"I was as blue as blue can be," he said.
Meeting Donna changed his life, but some of their relatives opposed the relationship. She, too, is bipolar. Having a child seemed impossible.
"I can't deal with this, Donna; take another test." After 13 tests, Matt gave up.
When Matt met Donna at Saratoga Race Course in 1999, she wore pants and a shirt that didn't match.
"I must have been off my meds," Donna said. She drove on their first date; Matt had lost his car. He was tall and good looking, with dark hair. She was short and peppy, with long curls.
He confessed early, fearing she'd walk away. "I've been to Four Winds."
"I've been there twice," Donna replied, speaking of the Saratoga Springs mental health hospital. "I got a nice tan." She also got electro-convulsive therapy for bipolar disorder that she says wiped out her memory of an entire summer.
"I don't close up about bipolar disorder," she said. "Because maybe if I could help somebody else, I would. People think if you talk about it, you're crazy."
Now they faced a grave responsibility. It was what they'd always wanted, actually. A nice house and a family. But they weren't ready to handle it.
For the 6,400 people with mental disorders who live in Rensselaer County, Unity House offers crisis intervention, advocacy and child services. It serves 450 adults in various housing programs.
In any given year, more than 54 million Americans have a mental disorder such as schizophrenia or major depression, though fewer than 8 million seek treatment, according to the U.S. surgeon general. The notion that the mentally ill belong in hospitals unless they're symptom-free has faded.
The number of New Yorkers in psychiatric facilities dropped from 90,000 in the 1950s to fewer than 4,000 today, said Joseph Glazer, president of the Mental Health Association in New York State.
To thrive, the mentally ill need help navigating the housing market, employment and education, said Harvey Rosenthal, executive director of the New York Association for Psychiatric Rehabilitation Services, an advocacy group. "We have to pay attention to how they think and act and care for themselves. Just because somebody may be confused at times doesn't mean they can't recover and live a very full life."
The cost of those services is money well spent, Rosenthal argues.
Creating supportive housing for America's 110,000 mentally ill homeless would cost taxpayers little more than leaving them on the street, where each accounts for an average of $40,500 a year in emergency room, psychiatric hospital, prison and shelter costs, according to a 2001 study by the University of Pennsylvania Health System.
Typically, a severely mentally ill homeless person spends 4.5 months in a shelter, four months in hospitals and nearly three weeks incarcerated, the study found.
Unity House operates a wide range of housing -- from group homes to crisis beds to housing for people with HIV/AIDS, chemical addictions or domestic violence problems. It also teaches daily living skills, organization and social development.
By the time they called Unity House, Matt and Donna were reeling from sleep problems linked to their medications. Donna had lost a job at an orthodontist's office, and Matt's finances were a shambles. Their families wanted them to give up custody of their baby at birth.
The shame associated with mental illness is the first and foremost barrier people face, Rosenthal said.
"Mental illness strikes one in five. It could happen to any of us. It's so close (we) want to distance, to say it's those people," Rosenthal said. "We all get depressed. We all get panicky or anxious and have compulsions and peculiarities. That's why it's so important that the state maintain adequate funding for community support."
The $632 a month that Unity House clients get from Social Security doesn't cover rent, groceries and clothing, said Paulette Maxon, supported housing director. Need always outpaces funding at Unity House, which relies on grants, government stipends and private donations.
The public may not realize that many people with mentally illness rely on limited public assistance and do their shopping in dollar stores, Rosenthal said. "They have to be wizards, often, with their budgeting."
Unity House found Matt and Donna an apartment in Troy. When Donna went into labor, her Unity House case manager came to the hospital. "You don't doubt yourself when you have someone saying you can do it," she said.
Donna insisted Matt watch the delivery, although it made him queasy. Justin was born Sept. 4, 2002.
"Do I really get to take him home?" she said. Unity House helped convince their relatives the couple could raise Justin, now a thriving toddler.
Matt and Donna are considered very high-functioning. Often, they did well. Other times, Matt would isolate himself and stop cutting his hair. Or he would become agitated, calling Unity House over and over and over.
"This is your mental illness, Matt," Maxon would say.
"He had no trust," said Cheri Watt, Unity House community housing assistance program coordinator. "That's the same with a lot of our consumers. They've had such bad experiences in life in general."
Some clients get arrested or smoke marijuana, blast music and trash apartments. Most just want to fit in, Maxon said. "They just want the so-called normal life. Matt wants to work ... They want to have healthy friends. These people aren't asking to hear voices in their heads."
Back home, Matt worried about bugs. Unity House intervened with the landlord. Matt complained. There were ants or mice or holes in the ceiling, or the walls were sinking. One neighbor would drink and bang on their door. They liked their next-door neighbor, but came home one day to a fleet of police cars; he'd died of a heart attack at 30. The couple moved.
They found a clean, two-bedroom apartment with sunny windows and wall-to-wall carpeting near Route 4 in Troy.
"I hate that word, disabled," Matt said. "And I hate the word mentally ill." He hates when people say things like not to take that "wacky medication."
He admits he is oblivious to certain social skills.
"Did you ever see that show, 'Curb Your Enthusiasm?' " Matt said. The HBO series stars Larry David as the protagonist with a knack for insulting friends and acquaintances. "That's me."
"He always says the most inappropriate things," Donna says.
"I do, I do."
Having Unity House call their tenants each day makes a big difference, said Catherine Nasser, who manages the 168-unit Country Garden Apartments in Troy. One man would dial 911 if his bread smoked in the toaster.
"The first year, he was calling 911 for everything," Nasser said. "They've been working with him, and that has totally stopped."
When Joe Genovese became Matt's case manager last year, he sat with the couple for hours to clear up Matt's garbled finances. He reminds Matt to let go of things, to not make so many nagging phone calls.
"I've always wanted to get back on my feet," Matt said. "They've helped me out a lot, trying to get me back on the road. Trying to balance the meds. Joe is teaching me how to slowly, gradually get back."
A stable home helps people with complex mental issues live more productive lives, experts say. At the very least, it helps them to stop bouncing from emergency room to shelters to the streets and detox. At best, it boosts earned income 50 percent and helps maintain sobriety. Eighty percent of those who found homes, one study showed, remained housed a year later.
"Look at how far Matt and Donna have come," Maxon said. "They were homeless, facing the loss of their child. Budgeting was a big issue for them."
Eventually, Matt and Donna hope to get married, buy a house and find jobs.
"We're very structured people," Matt said.
"That's from being in the hospital," Donna said with a laugh.
Their next goal is to "graduate" from Unity House. "Let them help someone else," Donna said. "There are people that need more help than us. We're pretty self-sufficient. We're probably the most normal-looking disabled people."
Graduation is rare, Maxon said. Clients who venture out to work often have trouble keeping jobs because of their disability, and may not earn enough to afford rent and child care.
But "we have to go further," Donna said. "When Justin goes to school, we don't want to say to the other parents that we're home disabled and don't do anything. I want Justin to be proud of us."
Mental health laws. Letter to the Editor
Kudos for "From grief rises Timothy's Law" [News, April 5], describing the O'Clair family whose son, Timothy, committed suicide at age 12, after years of struggle with mental illness. No family should ever have to give up custody of a child to the government in order to receive necessary mental health services because their insurance offers little or no mental health benefits.
Unfortunately, there are many families on Long Island faced with the same grim situation. After two years of review, and with sponsorship from 35 state senators, Majority Leader Joseph Bruno (R-Brunswick) is showing willingness to move the issue of insurance parity forward. He has said, however, that he will not back "Timothy's Law" in its present form - although he might agree to let a narrower piece of legislation go to conference committee so differences between the Assembly and Senate positions can be negotiated.
Many advocates see this as progress. But a bill that won't deliver comprehensive mental health care may not be a bill worth passing. Let's hope the Senate does the right thing for the thousands of New York children and adults with mental illnesses.
Editor's Note: The writer is director of public policy, Mental Health Association of Nassau County.
Timothy's Law to reform Medicaid. Letter to the Editor
Your recent editorial, ''Tough Medicaid reforms needed,'' accurately depicts that Medicaid ''shot county taxes way too high'' in New York.
As a state, we must not only work to find solutions to this problem, but we must protect access to the services so many individuals on Medicaid rely on. One way to accomplish this goal would be to pass Timothy's Law as part of this year's budget.
Timothy's Law would require insurance companies to provide coverage for mental health and chemical dependency services at the same level they do for physical ailments. Because some parents are left without adequate mental health insurance for their children, hundreds, possibly thousands, are forced to relinquish custody of their children to the state so their children can become Medicaid-eligible and access the unlimited mental health services afforded to all Medicaid recipients. When this occurs, children are placed in costly residential facilities, at taxpayer expense.
Taxpayers are left subsidizing the multi-billion-dollar health insurance industry so they may continue their discriminatory practices against those living with mental illness.
Passing Timothy's Law as part of the budget is sound policy that would decrease costs for New York's families and the state's Medicaid system. I urge our government officials to examine this possibility, and the significant savings, in greater detail.
next time, we remain,