MHANYS CHANGES FRIDAY FAX FROM ALBANY TO MHANYS MENTAL HEALTH UPDATE: In order to provide the most up-to-date information on topics of interest to the mental health community, MHANYS has changed the way in which we provide information to people. As you will see, the format of the publication has not changed significantly, but we hope that this will enable MHANYS to keep readers better informed of issues that impact New Yorkers living with mental illness. It is our intention that with this change, MHANYS Mental Health Updates will be more issue-driven and timely. We hope you continue to find our information useful.

GOVERNOR PATAKI MAKES FINAL ‘STATE OF THE STATE’ ADDRESS – ADDRESSES CIVIL COMMITMENT OF SEXUAL OFFENDERS: In his final address to the Members of New York’s Legislature and to the 19+ million New York residents today, Governor Pataki began by reminiscing about his previous 11 years as Chief Executive of the State of New York and his accomplishments in that time. The Governor honored the memory of the late Senator Ron Stafford, Senator Pat McGee and Assemblymember Audrey Hochberg.

The Governor emphasized his accomplishments on traditionally conservative platform issues such as public safety and reduction of taxes, taking positions front and center in his speech. After the address, reporters could be heard asking lobbyists and legislators alike whether they think Governor Pataki is vying to become President Pataki.

After listing additional accomplishments such as Medicaid reform, Vasean’s Law, and tax incentives for businesses in Lower Manhattan, Governor Pataki launched into a full advance in his effort to enact legislation that would allow for civil commitment of sexual offenders. As we have noted before, the mental health community takes great exception to this proposal because it would allow for the misuse of psychiatric centers for the purposes of housing such sexual offenders indefinitely.

We plan to further articulate our concerns about safety, the sapping of resources, and the increased stigma that such action would perpetuate in a letter to legislators later this week. This letter will also offer some alternatives to the proposed use of psychiatric centers for housing sexual offenders indefinitely. And next week, mental health advocates plan to take this message public in a press conference to be held on Monday.

Noticeably absent from the Governor’s address was any mention of Timothy’s Law. Timothy’s father, Tom, was in attendance at the Governor’s address, but unfortunately, there was no mention of Timothy’s Law. Though mental health and addiction parity would benefit millions of New Yorkers, it has never been mentioned in the ‘State of the State.’

IN THE NEWS:

Mental health programs in a bind. By Cara Matthews
Binghamton Press & Sun Bulletin, January 3, 2006

Agencies serve more as state aid stagnates

ROCHESTER — Debbie Bartlett, her husband and three emotionally troubled sons moved to the area some 15 years ago, only to find that the support group system and respite care on which they had relied back home did not exist locally.

Bartlett's struggle to navigate the complex web of health and educational services the boys needed led her to launch the Rochester Mental Health Association's now-thriving Better Days Ahead program. The organization has served more than 600 families, but as the need for help continues to grow, it becomes more difficult to accommodate everyone, she said.

"We've taken on more and more families and really have stretched our staff to the max," said Bartlett, 56, who moved from Wayne County.

Community advocacy groups such as the Mental Health Association have faced an increasing demand for services, along with growing staff, health-care and transportation expenses over the past decade, but the state funding that forms the bulk of their budgets has remained virtually flat. A coalition of these agencies, which serve more than 100,000 people statewide, is requesting a 10-percent hike in the 2006-07 budget, or about $20 million more.

Some community-based programs are converting to Medicaid funding under a new initiative being phased in, which will give them more regulatory requirements but more consistent increases. In contrast, other categories of mental-health agencies, such as clinics, have received increases, advocates said.

Community-based programs feel overlooked.

"It's just reached a breaking point at this juncture," said Harvey Rosenthal, who heads the New York Association of Psychiatric Rehabilitation Services.

"We need a significant increase," he said. "A small increase would only bring us back to where we were the last few years."

The recovery and rehabilitation services the agencies offer include drop-in centers with hot meals, peer counseling, employment and education programs, and respite care for families. They comprise a safety net that can help prevent relapses and visits to hospitals, homeless shelters and prisons, Rosenthal said.

"They're what allows people to make it in the community and move forward in their recovery," he said.

Gov. George E. Pataki has until Jan. 17 to unveil his budget proposal. The GOP-led Senate and Democrat-controlled Assembly have until April 1 to forge an agreement on a spending plan, although they traditionally are late.

John Cape, Pataki's budget director, said last week that the administration is considering the 10 percent hike. "I can't really speculate on what the outcome of the budget will be," he said, "other than stay tuned."

New York's current mental-health treatment system has evolved from one that was largely based in institutions to one that focuses on living in the community and recovery.

For now, some coalition members keep waiting lists or turn people down altogether.

As the state contribution has remained flat and wages have gone up 2 percent a year, Better Days Ahead has reduced the number of hours of respite care it offers from 1,200 to 800 per year, Bartlett said. There are usually about 30 people waiting for the group's parent training course. The consequences of not getting help can be devastating, she said.

"Every time I have to turn away a family for services, the chances are greater that child will not graduate high school," she said.

Andy Kohlbrenner, rehabilitation director for the Jawonio agency, which helps people with physical, developmental and/or emotional disabilities, said funding for its drop-in centers in Rockland and Westchester counties was cut last year. As a result, the social clubs were open four evenings a week instead of five. The drop-in club in Ossining, Westchester County, serves twice the number of people it used to and has the same budget.

Starting new initiatives is out of the question for many agencies. Josh Koerner, executive director of the New Rochelle-based CHOICE, said he would like to start a new program of outreach in prison, but there is no money to do it.

Holding onto staff members you can't pay well has been a struggle, Koerner said. Two of his seven employees live in subsidized housing, one is in arrears with rent, and two are consolidating their debt, he said.

When there are job openings, the organizations either aren't filling them or are delaying hires, advocates said. Turnover rates are more than 25 percent, and the lack of stability makes recovery more difficult for clients.

Angela Warren, independent living coordinator for the Rochester Mental Health Association, said her programs augment the work of other mental health professionals. She assisted someone who had obsessive-compulsive disorder and whose home was filled with stacks of newspapers and unpacked boxes. The person was missing medical appointments and paying bills late. Warren suggested a filing system to simplify the person's life. Another program encourages clients to explore new things, such as quilting or bird watching.

Peer coach Lisa Snyder of Brighton, a Rochester suburb, said she'll meet with clients in their homes or go out for coffee, and sometimes they'll go shopping or to appointments.

"I can empathize with people in what they're going through," said Snyder, 44, who has dealt with mental illness and is doing well now. "I'm very patient with people. Sometimes people don't understand people who aren't well and are very impatient with them."

A child in need inspires a life of advocacy. By James M. Odato
Albany Times Union, December 26, 2005

Personal experience leads to work helping parents find support and services for their children

ALBANY -- Paige Pierce's life took a dramatic turn 14 years ago as a young mother in the tiny Adirondack town of Inlet.

"Emmet was diagnosed when we lived up there," she recalls.

Now 40, the Slingerlands woman looks back on how her second child was developing much slower than her older son, Cameron, and was showing little speech progress.

Albany Medical Center doctors delivered the news: a form of autism, later determined to be Asperger's Syndrome.

With that diagnosis -- and after dealing with denial, anger and guilt -- Pierce found her calling. She's become a professional advocate for children with mental disorders.

As director of the not-for-profit Families Together in NYS Inc., her life revolves around parenting and helping parents find support and services as they deal with children with emotional, behavioral and social difficulties.

Many days, she holds a vigil at the Capitol as she lobbies for laws and programs -- especially her priority, Timothy's Law.

The bill is named after a Rotterdam 12-year-old, Timothy O'Clair, who ended his bouts of depression by hanging himself in 2001. Pierce was pushing for "mental health parity" legislation even before his death.

Timothy's Law would require health insurers to cover costs of mental health treatments as they do other medical needs. Opponents argue it would have the opposite effect, causing tens of thousands of people to lose health insurance.

Pierce, who stopped using the last name Macdonald after her marriage recently broke up, works with a smile and patience -- as well as a controlled ferocity. Sometimes, Emmet joins her at the Capitol, showing lawmakers his calloused palms, the result of chronic hand-wringing caused by the anxiety associated with his disease.

"In college, I was student body vice president and politically active, outspoken and rooting for the underdog," she said. "It was only after Emmet was diagnosed, the underdog was somebody who I loved ... and wasn't able to advocate for himself."

Emmet Macdonald is an academically and musically gifted teen with a quick wit, but has the social skills of a young boy. His lack of maturity and high anxiety, somewhat controlled by medication, are due to Asperger's Syndrome.

During a recent interview at the 150-year-old Federal style home on eight acres where Pierce and her four children live, Emmet is friendly and funny.

He would like time on the computer his older brother is using. "It's times like this I wish I was an only child," he says. "Then I'd have the house to myself."

After a smile, he adds: "If I don't have my siblings, then when I have pizza, there's more for me."

He returns to a Calvin & Hobbes comic book and laughs. Asked about the Timothy's Law buttons his mother wears, he says he knows about the issue.

"You're trying to get the government to pass Timothy's Law, or have they already passed it? " he says to Pierce. He glances toward the picture of Timothy on the button: "Because they wouldn't help them pay for Timothy O'Clair, who had depression. Since the insurance wouldn't help him out, he committed suicide."

Pierce pats his head and tells her son: "He's like you. He had depression, like you have Asperger's Syndrome."

Often seen alongside Timothy O'Clair's father, Tom, in vigils at the Capitol in support of Timothy's law, Pierce started her job in 2000. She has grown the organization from a skeleton staff and $100,000 budget six years ago to more than 30 employees and a budget of public and private funds of $2.5 million.

Her own childhood prepared her well for the job. The fifth of eight children, Pierce attended a four-room school in Inlet, learning and playing alongside children of diverse ages. In high school in Old Forge, she co-captained her soccer team, got leads in the high school play, was student government vice president, and edited the yearbook from a hospital bed while recovering from a broken back, a winter sports injury.

Her stepfather, Richard Payne, was Inlet's chief of police, and from the age of 12, she said, "we learned how to dispatch on the police radio." Calling ambulance crews, firemen and others for life-or-death emergencies, and watching her stepfather serving the public 365 days a year helped her appreciate the need to respond to problems, said her mother, Joan Payne.

"She has over the years developed an attitude that things can and need to be done and you find a way to get them done," she said.

After graduating Skidmore College, where she majored in American studies, she directed programs at the Adirondack Center for The Arts in Blue Mountain Lake. She figured she'd raise her family in her Adirondacks town. But better resources were available for Emmet in the Capital Region.

Sen. Elizabeth Little, R-Queensbury, has been impressed with Pierce, calling her "a good advocate." But like many in her GOP conference, Little says Timothy's Law needs to be negotiated to guard against too much cost to small businesses. Opponents of the law say it would make health care insurance unaffordable for small employers.

"This is another mandate and every mandate has good intentions and has a story behind it," says Pamela Finch, spokeswoman for the Employer Alliance for Affordable Health Care. "But every mandate drives up health insurance."

Pierce says she'll keep fighting for the bill, sponsored in recent years by Assemblyman Paul Tonko, D-Amsterdam, and passed several times by the Assembly. Pierce and O'Clair don't favor a Senate version developed by Sen. Thomas Libous, R-Binghamton.

Elected last year to the Voorheesville School Board, Pierce, with the help of O'Clair and others, just recruited the state PTA in the effort to press the Legislature for Timothy's Law.

While Emmet's illness has required her and family to adapt, she said, she doesn't wish things were different.

"We get calls from families with kids just diagnosed. I say to them: If a genie came down and said I could wish Emmet's illness away, I wouldn't. It's part of what he is. It's what made me who I am. I wouldn't be an advocate for people with disabilities if he hadn't been diagnosed. It's made our family who we are."

Help available for 'dual eligibles.' By Glenn Liebman
Albany Times Union, January 1, 2006

A lot of media attention has been focused on the new prescription drug benefit, Medicare Part D. Most of the publicity and materials have focused on seniors. Another group, however, will be dramatically affected by this change as of today, although comparatively little publicity and educational efforts have targeted them.

People who have both Medicaid and Medicare, called "dual eligibles," will find that the prescription medication coverage they received under Medicaid will be replaced by Part D coverage, presenting potential new pitfalls they did not face under Medicaid.

More than 500,000 people in New York state are dual eligible, including 75,000 who receive services through the public mental health system. The dual eligibles include some of the poorest, sickest, most vulnerable individuals -- the very group that can least afford any barriers to accessing their medications.

Participation in Medicare Part D is not voluntary for dual eligibles. All dual eligible individuals already should have received a letter from the Centers for Medicare and Medicaid Services notifying them which Part D plan they have been automatically enrolled in. In the past, individuals who were dually eligible were identified under their pharmacy plan as Medicaid recipients and received their medication at no cost. Unfortunately, this does not exist under Part D.

We have several concerns regarding the implementation of Part D for individuals with mental illness. Under Part D, they (as well as all other dual eligible individuals) will have a $1 co-payment for a generic medication and a $3 co-payment for a nongeneric medication.

This does not appear to be a great deal of money, but most people in the public mental health system receive personal needs allowances of less than $150 a month. If you combine their limited resources with the fact that many take multiple medications (it is not rare to find people with mental illness who take eight to 10 different medications), the economic impact becomes dramatic. Well more than 25 percent of personal needs allowances can be spent on medication. This impact could lead to fewer people taking the medications that often play an integral role in their movement toward recovery.

The Centers for Medicare and Medicaid Services has been supportive of full coverage for all mental health medications in all plans, but several nonmental health medications may not be covered by the new pharmacy plans. In many cases, individuals with mental illness also have disorders such as high blood pressure or diabetes. Part D will have a negative impact if people are unable to get access to nonmental health medications.

A specific example of the possible impact hit home after a recent conversation I had with a friend whose daughter has bipolar disorder and will receive pharmacy services through Part D. Though her new plan covers her mental health medications, it does not cover her diabetes medication. Her choices are to shop around for another plan in the hope that it will cover the medications or petition her plan to include those medications are part of her formulary. Either way, there is no guarantee she will have access to the diabetes medication.

The best strategy to help respond to concerns about Medicare Part D is to be well educated about the program. Although there is not a lot of information out there regarding individuals who are dual eligible, there are some resources available. As a first step in the process, if you have access to a computer, go to http://www.medicare.gov or call 800-MEDICARE (800-633- 42273).

Several mental health advocacy groups in New York state have been active in educating individuals with mental illness and their service providers about Part D. Our organization, the Mental Health Association in New York State, has recently created a Web site, http://www.medicarepartdnys.org. It also provides links to other related sites. Also, individuals can call us at 1-800-766-6177 with any questions.

Glenn Liebman is CEO of the Mental Health Association in New York State.

N.Y. renewal of Megan's Law at issue. By Nick Reisman
Binghamton Press & Sun Bulletin,

Assembly GOP seeks to toughen sex offender registry

ALBANY — With three weeks to go before the expiration of the state's registered sex offender law, Assembly Republicans on Tuesday said thousands of sex offenders would be taken off the list unless it's renewed.

"We are not here to be 'Chicken Littles,'" Minority Leader James Tedisco, R-Schenectady, said. "But a pretty big meteorite is headed towards the families of New York state."

The 10-year-old Megan's Law is named after 7-year-old Megan Kanka, a New Jersey girl who was raped and killed in 1994 by a known child molester who had moved across the street from the family without their knowledge.

All states now have a form of the measure, which requires sex offenders to register with local and state authorities. The New York statute is due to expire Jan. 21.

Republicans want to strengthen it by requiring low- to moderate-risk offenders be registered for life, rather than the current 10 years. Democrats want to extend the current measure until Congress acts. Congress is considering a measure that would apply nationally.

Tedisco warned that if Congress and the Legislature haven't acted by Jan. 21, 168 low- and mid-level sex offenders will no longer be on the list. By the year's end, 3,579 would be off the list, Tedisco said. Violent sex offenders would remain on the list if the law is not renewed in time, lawmakers said.

But Assembly Speaker Sheldon Silver, D-Manhattan wants to wait for the U.S. Congress to pass its version first. In the meantime, he wants to merely extend the current statute.

A spokeswoman for Gov. George E. Pataki said the state can't afford to wait to renew the law.

"We enacted Megan's Law without a federal provision," said Jessica Scaperotti. "We should take all necessary steps today."

Pataki and Tedisco want lifetime registration of all sex offenders. Pataki also wants pictures of sex offenders — regardless of level — to be posted on the Department of Criminal Justice's Web site.

Some mental health experts think that the sex offender registry doesn't address the problem and can have a damaging effect on a community.

"Megan's Law is a bit of a double-edged sword," said Richard Hamill, president of the New York State Alliance of Sex Offender Providers, an organization of professionals that provides counsel to sex offenders.

Hamill said "dissemination of lower-risk sex offenders sometimes have a detrimental effect of maintaining stability in the community" since they are often unemployed and cannot find work. "While having a registry could help law enforcement with their investigations, we don't really know what the overall effect of Megan's Law is" or how much of a success it is, he said.

Tedisco said he was willing to strike a deal with Assembly Democrats.

"We'd like them all to be registered," Tedisco said. "But maybe we can sit down and compromise (with the Democratic leadership)."

As of this month, there are 18,187 registered sex offenders in New York who are not in jail, according to the state Department of Criminal Justice.