Fall 2004 Newsletter

Tuesday, November 9, 2004, Family Education Workshop, ROCHESTER PSYCHIATRIC CENTER, 1111 Elmwood Ave. Room A101, call 241-1533 to register

7:00-8:00 “Spirituality and a Faith Community”- A look at these powerful supports and how they may help the person with mental illness. Rev. James Widboom, Chaplain, RPC

Monday, November 22nd, Monthly Support/Educational Meeting, REFORMATION LUTHERAN CHURCH, 111 N. CHESTNUT ST.

6:30-6:45 Welcome, Registration

6:45-7:00 Business, Announcements

7:00-7:45 ACT (Assertive Community Treatment) –Nancy Price, Strong Ties AOT (Assisted Outpatient Treatment)- Dave Putney, Socio Legal Center. Learn about these 2 different mental health interventions that are available in Monroe County for those with serious mental illness who are most at risk.

7:45-8:00 Break

8:00-9:00 Support Groups for Parents, Siblings, Spouses/Partners, Consumers

Offspring, facilitated by trained NAMI members

Tuesday, December 7th, Family Educational Workshop ROCHESTER PSYCHIATRIC CENTER, 1111 Elmwood Ave., Room 101A, call 241-1533 to register

7:00-8:00 “Happy Holidays” – Tips for reducing stress around social gatherings, meals, and faith celebrations.

Nancy Lindberg, Mental Health Educator, Mental Health Association

Karin Shealye-Hill, MS. R.D., Director of Nutrition Services, RPC

Elizabeth DeMartino, R.N., Therapist, Spiritus Christi Mental Health Outreach Center

NO MONTHLY MEETING AT THE CHURCH IN DECEMBER

SEE YOU IN JANUARY HAPPY HOLIDAYS

IMPAIRED AWARENESS OF ILLNESS: ANOSOGNOSIA
The Catalyst, Summer 2004

Impaired awareness of illness (anosognosia) is a major problem because it is the single largest reason why individuals with schizophrenia and bipolar disorder do not take their medications. It is caused by damage to specific parts of the brain, especially the right hemisphere. It affects approximately 50 percent of individuals with schizophrenia and 40 percent of individuals with bipolar disorder. When taking medications, awareness of illness improves in some patients.

Impaired awareness of illness is a strange thing. It is difficult to understand how a person who is sick would not know it.

Impaired awareness of illness is very difficult for other people to comprehend. To other people, a person’s psychiatric symptoms seem so obvious that it’s hard to believe the person is not aware he/she is ill. Oliver Sacks, in his book The Man Who Mistook His Wife for a Hat, noted this problem:

It is not only difficult. It is impossible for patients with certain right-hemisphere syndromes to know their own problems…And it is singularly difficult for even the most sensitive observer to picture the inner state, the “Situation” of such patients., for this is almost unimaginably remote from anything he himself has ever known.

What is impaired awareness of illness?

Impaired awareness of illness means that the person does not recognize that he/she is sick. The person believes that their delusions are real (e.g. the woman across the street really is being paid by the CIA to spy on him/her) and that their hallucinations are real (e.g. the voices really are instructions being sent by the President). Impaired awareness of illness is the same thing as lack of insight. The term used by neurologists for impaired awareness of illness if anosognosia, which comes from the Greek work for disease (nosos) and knowledge (gnosis). It literally means, “to not know a disease.”

How big a problem is it?

Many studies of individuals with schizophrenia report that approximately half of them have moderate or severe impairment in their awareness of illness. Studies of bipolar disorder suggest that approximately 40 percent of individuals with this disease also have impaired awareness of illness. This is especially true if the person with bipolar disorder also has delusions and/or hallucinations.

Is this a now problem? I’ve never heard of it before.

Impaired awareness of illness in individuals with psychiatric disorders has been known for hundreds of years. In 1604 in his play “The Honest Whore”, playwright Thomas Dekker has a character say: “ That proves you mad because you know it not.” Among neurologists unawareness of illness is well known since it also occurs in some individuals with strokes, brain tumors, Alzheimer’s disease, and Huntington’s disease. The term anosognosia was first used by a French neurologist in 1914. However in psychiatry impaired awareness of illness has only become widely discussed since the late 1980s.

Is impaired awareness of illness the same thing as denial of illness?

No. Denial is a psychological mechanism which we all use, more or less. Impaired awareness of illness, on the other hand, has a biological basis and is caused by damage to the brain, especially the right brain hemisphere. The specific brain areas which appear to be most involved are the frontal lobe and part of the parietal lobe.

Can a person be partially aware of their illness?

Yes. Impaired awareness of illness is a relative, not an absolute problem. Some individuals may also fluctuate over time in their awareness, being more aware when they are in remission but losing the awareness when they relapse.

Are their ways to improve a person’s awareness of their illness?

Studies suggest that approximately one-third of individuals with schizophrenia improve in awareness of their illness when they take antipsychotic medication. Studies also suggest that a larger percentage of individuals with bipolar disorder improve on medication.

Why is impaired awareness of illness important in schizophrenia and bipolar disorder?

Impaired awareness of illness is the single biggest reason why individuals with schizophrenia and bipolar disorder to not take medication. They do not believe they are sick, so why should they? Without medication, the person’s symptoms become worse. This often makes them more vulnerable to being victimized and committing suicide. It also often leads to rehospitalization, homelessness, being incarcerated in jail or prison, and violent acts against others because of the untreated symptoms.

AN OPPORTUNITY TO HELP PREVENT SUICIDE AND IMPROVE TREATMENT FOLLOWING A SUICIDE ATTEMPT.

In the United States, 400,000 individuals attempt suicide each year, with many ending up in our hospital emergency rooms (Ers’). Further more, a suicide attempt is the biggest risk factor for suicide in the future. Yet, few resources have assisted ER staff in effectively and compassionately communicating with consumers and family members and steering them toward appropriate treatment and support. NAMI is trying to bridge that gap by developing a resource for ER staff to improve communication and services for consumers and family members following a suicide attempt. In order to make this an effective resource, we need to hear from you about your experiences with ER staff after a suicide attempt. Visit www.nami.org/suicide to take a survey that will inform our efforts and help us create a useful guide for Ers that will help consumers and their families access effective follow-up care and support after such a traumatic event.

If you are currently in crisis, call your local emergency services or the national suicide hotline at 1-800-SUICIDE.

Note: A National Satellite Videoconference and Local Suicide Survivors Panel will be held on Saturday, November 20th at the U of R Medical Center, Adolph Auditorium (Room #1-7619) from 10:00a.m. – 1:30 p.m. This program is free of charge, light refreshments will be served. Seating is limited, free parking is available in the 300 Crittenden Blvd. Visitor’s Lot. RSVP 325-3145.

Survivors from across the country and here in Rochester will come together in an effort to comfort, support, heal and inform. Co-sponsored by U or R Center for Study & Prevention of Suicide, MHA of Rochester/ Monroe County, “After Suicide” Survivors Support Groups, Janssen Pharmaceutica, Inc. and NAMI Rochester.

FAMILY TIPS
Living with Mental Illness in your family.

Here are some tips to help you learn to cope with mental illness in your family:

  1. Remember that you did not cause the illness and you can’t cure it. You can’t control the illness. (Despite your best efforts symptoms might get worse or they might improve.)

  2. If you feel resentment, it is a sign that you are giving too much of yourself.

  3. Strange behavior is a symptom of the disorder. Don’t take it personally.

  4. Work to accept your relative as he/she is, not what you feel he/she could have been.

  5. Treat your relative with dignity. Treat him as an adult. Include him in discussions.

  6. Ignore those things you cannot change. Let some things slide. (However, never ignore violence.)

  7. Carry on with business as usual. Reestablish routines as quickly as possible when they are disrupted.

  8. Plan short-term goals, rather than focusing on long-term ones.

  9. Encourage a routine. Structure adds order and calmness to what might be an otherwise tumultuous state.

  10. Do not give in to a person’s demands in hopes of preventing a crisis. Establish limits and boundaries.

STAR CENTER

The STAR center provides support, technical assistance, and resources to help improve and increase the capacity of consumer operated programs to meet the needs of persons living with mental illnesses from diverse communities. Self-help is recognized as a major element of recovery, and peer provided services and supports are an important source of self-help and mutual support opportunities.

To access the STAR center, go to http://www.consumerstar.org/.

The STAR center provides an array of programs and services accessible via this website. Additional resources are constantly being identified. New resources are being developed by the STAR Center in response to input and feedback from all stakeholders.

Visit the publications section for additional resources, including our Cultural Outreach Resource Directory. This directory, arranged by state, provides contact information for a variety of organizations focused on meeting the needs of diverse communities.

The links page provides ready access to other websites of organizations focused on specific cultural needs.

Take our Needs Assessment Survey!

ROCHESTER PSYCHIATRIC CENTER
Steve Schwarzkopf, MD., Clinical Director or RPC

In keeping with good healthcare practice, Rochester Psychiatric Center is pleased to announce that RPC will become a smoke/tobacco free facility of August 26, 2004. This move follows extensive study and a multi-year effort involving staff, patients and various stakeholders. There are numerous efforts already underway to assist both patients and staff in smoking cessation. Obviously, these efforts will continue for the foreseeable future.

On August 26, a new smoking policy will go into effect which prohibits all inpatients and visitors from using tobacco products on RPC grounds. Staff, families and friends will no longer be able to provide cigarettes and tobacco products go patients. Again, this action is the result of a multi-year effort that has involved examining and learning from the experience of other OMH facilities as well as private institutions that have gone smoke/tobacco free.

We have intensified and expanded our education and support programs for patients involved in smoking cessation.

BORDERLINE PERSONALITY DISORDER RESOURCE CENTER HITS THE GROUND RUNNING IN PROVIDING INFORMATION ON ILLNESS AFFECTING 10 MILLION AMERICANS.

WHITE PLAINS, N.Y.—(BUSINESS WIRE)—MAY 20, 2004—

White Plains-Based Center Now Averaging 100 Calls Per Month to Help Patients, Parents and Health Care Professionals Deal With Borderline Personality Disorder.

Any doubts about the need for information on Borderline Personality Disorder (BPD) can be quickly dispelled by responses to the recently established BPD Resource Center at Payne Whitney Westchester, New York Presbyterian Hospital in White Plains.

Opened in February 2004 as the only hospital-affiliated national BPD resource center for information, education, referrals and support, the center is already fielding up to 100 calls per month. It also is becoming a popular destination point for the latest research and data on the disorder.

BPD affects roughly 10 million American, more than 75% of whom are women. 10% of all mental health outpatients and 20% of inpatients are thought to have the disorder, which is characterized by extreme mood swings, impulsive behavior, self-injuring acts and suicide ideation as some of its many symptoms.

According to Eliza Whoriskey, M.A., Administrative Manager of the Resource Center, typical questions asked by callers include:

  • What are the symptoms of BPD?
  • Where can I have my child diagnosed?
  • Where can I turn for treatment?
  • What are the treatment alternatives?
  • Where can I find other families coping with similar issues?
  • What questions should I be asking of doctors and mental health professionals?
  • What should I, as a general practitioner, know about BPD- and to whom should I refer patients?

“Despite the prevalence of BPD throughout the country, there is much confusion about the disorder. It commonly occurs with one or several other disorders and its specific causes are still unknown,” Whoriskey says. “As a consequence, people can go years without being properly diagnosed- and years after that before they find appropriate treatment. The availability of information will cut through the uncertainty and provide better outcomes.”

“It is vitally important that information become readily available because there are sufficient grounds for optimism today. Treatments are producing positive results, support networks are being established and more attention is being given to the disorder both at academic and research institutions,” adds Perry D. Hoffman, Ph.D., family liaison at the BPD Resource Center and President, National Education Alliance for Borderline Personality Disorder. “We don’t have all the answers yet, but we can eliminate a lot of the pain and frustration that accompany coping with BPD.”

According to Whoriskey, approximately 60 percent of the queries received thus far have come from people with BPD, while 30 percent are from families and 10 percent are asked by mental health professionals. Most callers are in the New York metropolitan area, she adds, but as more information is collected about treatment centers elsewhere, the BPD Resource Center will become a major informational resource for people throughout the country.

The Center, which was made possible through funding from generous hospital benefactors, has three primary missions:

  • Inform the public about BPD and provide assistance in locating treatment facilities
  • Collect and disseminate the most current information on the disorder
  • Provide information to mental health practitioners and other professionals working with patients and families struggling with BPD

Its clinical director is Otto Kernberg, M.D., Director of New York Presbyterian’s Personality Disorders Institute and one of the leading figures worldwide in understanding and diagnosing BPD.

The Borderline Personality Disorder Resource Center is the country’s only hospital-affiliated, national BPD resource center for information, education, support and referrals for treatment. Its office and library, which contain numerous books, articles and research papers, and data on treatment facilities, are open Monday through Friday, 9 a.m. to 5 p.m., on the campus of New York Presbyterian Hospital, Westchester Division at 21 Bloomingdale Road in White Plains, NY. For information, please call the Resource Center’s toll-free number, 1 888-694-2273, or visit its website at www.bpdresourcecenter.org.

New York Presbyterian Hospital was formed in 1997 through the merger of two nationally recognized hospitals- New York Hospital and Columbia Presbyterian Hospital. The hospital’s Westchester Division, opened in 1894, is one of the world’s most advanced centers for psychiatric care. The Westchester Division serves children, adolescents, adults and the elderly with comprehensive outpatient, day treatment, partial hospitalization and inpatient services. In addition to clinical treatment, the Westchester Division is also a center for interdisciplinary medical research and education.

Contacts: BPD Resource Center, Eliza Whoriskey, M.A., 914-682-5496/info@bpdresourcecenter.org or Cole Communications Bob and Sue Cole, 914-793-0318/info@colecommPR.com

NEW YORK STATE SPEARHEADS ITS OWN SUICIDE PREVENTION, EDUCATION INITIATIVE

Mental Health Weekly – July 26, 2004

The New York State Office of Mental Health (OMH) has launched a statewide education and awareness campaign to help the public, health care providers and educators become more familiar with the risks for and warning signs of suicide.

The campaign comes at a time when suicide prevention and awareness initiatives of a national scope, including a national screening program for teens, are being planned (see MHW, July 12).

State officials initially unveiled SPEAK (Suicide Prevention Education and Awareness Kits) during Suicide Awareness and Prevention Week in New York, from May 16-22. The program includes information kits designed to help New Yorkers become aware of the facts about suicide and how to help someone who may be considering suicide.

SPEAK, along with its campaign slogan: “Speak up, save lives,” is part of New York’s larger suicide prevention effort, according to OMH officials, who say their efforts include working with the National Association of State Mental Health Program Directors (NASMHPD) on developing a policy statement around suicide prevention.

OMH will be distributing SPEAK kits through local governments, mental health agencies, providers and affiliated organizations, and other state agencies and their affiliates, including schools across the state. To date, about 5,000 kits have already been distributed, say officials, who say they have expectations of reaching tens of thousands of New Yorkers through this initiative.

In addition to reducing suicide and raising public awareness, an important goal is reducing the stigma associated with getting help for emotional problems or mental illness, said OMH Commissioner Sharon e. Carpinello, R.N., Ph.D.

“SPEAK is about saving lives,” Carpinello told MHW, “Individuals contemplating suicide often believe they can’t be helped. Someone concerned bout a loved one can make a difference by speaking up.”

Carpinello added, “Speak up is a message in itself. The message is that suicide prevention actually works. There is the perception that others can’t prevent suicide from happening.”

The kits include a statewide listing of suicide hotlines, as well as state and national suicide and mental health resources. The kits also include specific information about men and depression; women and depression; older adults, depression and suicide; teen depression and suicide; and facts about suicide. Information about the various risk factors and signs of depression is also included.

Teen Screen, the national program that offers mental health screenings to adolescents in schools and other settings, is also listed as one of the resources in SPEAK. The program has been touted as a national model by the Bush administration’s Mental Health Commission.

“Teen Screen has been identified as a ‘ best practice’ model, said Carpinello. “We’re fortunate to have those kinds of models available.”

Suicide rates
According to the New York State Department of Health, approximately 1,300 New Yorkers take their own lives each year, and it is estimated that for every suicide death, there are anywhere from 8 to 25 suicide attempts. The number of New Yorkers who lost their lives to suicide in 2000 and 2001 exceeds the number of New Yorkers who lost their lives to the World Trade Center disaster, according to the New York City Department of Health and Mental Hygiene.

“There is an unrecognized need for this (awareness program) in the public domain.” Gary Spielman, OMH director of program management, told MHW. “The problem doesn’t get much attention and it should. We want everyone who’s looking at (SPEAK) to realize that silence and suicide go hand in hand.”

Spielman added: “We have to raise it as an issue and lay it out as a public health problem.”

SPEAK is designed to identify and help gatekeepers in a position to identify someone at risk for suicide, such as school personnel, health professionals, clergy, primary care providers, mental health and substance abuse professionals, and nurses, said Spielman.

Spielman said the campaign will help address the “missed opportunities” that can occur before a suicide. “About two-thirds to three-quarters of people who die (from suicide) have seen a physician within 30 days of death,” said Spielman. For seniors, the rate is even higher, as many as 75 percent, he added.

Meanwhile, OMH plans to focus on another population to include in the kit: college-bound students who are also at risk for depression. “OMH is developing a message for parents who are sending children away to college.” Said Carpinello. There is “very clear evidence that indicates an increase in depression for college students.”

Carpinello said the information, which will be added to the kits before September, will help parents recognize changes in behavior and the signs of depression.

Carpinello cited the recent legislation, the Garrett Lee Smith Memorial Act that passed the U.S. senate earlier this month. The bill was named for the college-aged son of Sen. Gordon H. Smith (R.-Ore) who committed suicide last fall.

“I really commend Senator Gordon Smith from Oregon for standing up before Congress to talk about his personal loss and the pain it must have taken to do that,” said Carpinello. The more the public hears from others who have been faced with issues regarding suicide, the more it could help “break down the wall of stigma,” said Carpinello.

“I think in some ways the tide has turned here,” said Carpinello. “Part of that is through the Bush (President’s New Freedom Commission on Mental Health) report and the work of the Surgeon General in his report in 1999."

Meanwhile, the SPEAK campaign will continue to evolve said Carpinello. “There is no point in time when we would stop educating and disseminating information “ about suicide prevention, said Carpinello.

For more information or for a copy of the SPEAK kit, visit www.speakny.org or call (866) 270-9857.

Congress Passes Major Suicide Prevention Legislation, Garrett Lee Smith Memorial Act Cleared for President’s Signature; House Kills Effort to Block Mental Health Screening

NAMI E-News September 11, 2004 Vol. 4-33

On September 9, both the House and Senate overwhelmingly approved legislation to support state and local suicide prevention programs. The legislation, known as the Garrett Lee Smith Memorial Act (S 2634) was approved by the House 352-64 and later cleared the Senate by unanimous consent. President Bush has pledged to sign the bill into law.

S2634 is named in honor of the late son of Senator Gordon Smith (R-OR). Immediately after the House passage, Senator Smith addressed NAMI’s 25th annual convention in Washington. In moving words, he spoke of his son’s memory and his family’s dedication to promoting suicide prevention and treatment for mental illness. Senator Smith’s wife also attended the NAMI convention and met with the growing network of NAMI affiliates that are being formed on college campuses across the country.

S2634 authorizes $82 million over the next 3 years to support state development of comprehensive youth suicide prevention and early intervention strategies. It also authorizes a new federal Suicide Prevention Resource Center to develop model early intervention programs. Finally, S 2634 also authorizes a new assistance to colleges and universities to support on campus mental health services.

It is important to note that S 2934 is an authorization bill and that Congress must follow through actually appropriate funding for the programs and activities authorized the Garrett Lee Smith Memorial Act. NAMI members are strongly encouraged to contact their members and Congress and urge them to support appropriations for suicide prevention activities authorized S 2634 in FY 2005.

On September 9, the House defeated an effort to cut off all federal funding for state and local mental health screening programs. The overwhelming bi-partisan vote was 95-315 as part of an amendment to the FY2005 Labor-HHS Appropriations bill (HR5006).

Representative Ron Paul (R-TX) offered the amendment to express opposition to what was termed “federally mandated universal mental health screening.” At the same time SAMHSA – as part of recommendations in President Bush’s White House Mental Health Commission report from 2003 - is moving forward to support development and replication of evidence-based screening tools that can be used in juvenile justice facilities and schools. NAMI supports these activities at SAMHSA. These efforts would have been cut off under the Paul Amendment.

After defeating the Paul Amendment, the House went ton to clear HR 5006 by a 388-13 margin. HR5006 includes FY 2005 funding for both SAMHSA and the National Institute Mental Health (NIMH). Under the bill, NIMH funding is increased to $1.421 billion (a $38.8 million increase over current year funding). This is the same amount requested by President Bush. HR5006 also includes $20 million in new funding for the Bush Administration’s Mental Health Transforming Initiative” state incentive planning grants to support the findings and goals in the 2003 White House Mental Health Commission report.

The Senate has yet to begin work on its version of the FY 2005 Labor – HHS Appropriations bill and it is unlikely to pass the bill before its expected pre-election adjournment on October 8. It is expected that the bill will not be completed until November, and will likely end up being part of a year end “omnibus” spending bill.

FDA Advisory Committee Recommends “Black Box Warnings” for Anti-Depressant Medications.

A food and Drug Administration (FDA) advisory committee held two days of meetings on September 13th and 14th to make recommendations on the use of anti-depression medications (5 selective serotonin reuptake inhibitors—Celexa, Luvox, Paxil, Prozac, and Zoloft and 4 atypical anti-depressants—Wellbutrin, Remeron, Serzone, Effexor) for children and adolescents and the risk of suicide. Prozac is the only medication specifically approved by the FDA for children and adolescents. The FDA generally follows the recommendations of its advisory committees.

The meetings included a public hearing during which families, advocacy groups and others presented statements related to the use of anti-depressants to treat major depression and the risk of suicidality. Dr. Ken Duckworth, NAMI’s Medical Director, provided a statement to the committee on behalf of NAMI. The meetings also included presentations by experts in child psychiatry and pediatric suicidality related to the use of antidepressants and the risk of suicidality.

In its statement, NAMI called for increased research to better understand the effectiveness and safety of antidepressant medications in children, close monitoring of youth prescribed medications as part of sound clinical practice, better training for providers treating youth with major depression, transparency in the research data so that families and providers have access to the results of all clinical trials and better communication with families about the risks and benefits of the medications.

NAMI asked the committee not to recommend action that would restrict safe and effective treatment options at a time when youth suicide is a public health crisis- with more than 3,000 young lives lost every year.

Studies presented during the meetings showed that antidepressant medications increased the risk of suicidal behavior and ideation in children and adolescents. Despite these findings, the overall risk of suicide remains quite low. There were not suicides in the 4,000 youth included in the clinical trials for anti-depressant medications that were presented to the committee. But the research also did not demonstrate the effectiveness of many of these medications in treating major depression in youth.

Several committee members expressed concern that there is not enough information to really know what to do -the current studies are too small, too short in duration and have not uniformly defined suicidal behavior to ensure reliable results. The committee called for more research to better understand the risks of suicidal behavior associated with prescribing anti-depressant medications for youth and recommended that the research be conducted by NIMH and not by the pharmaceutical industry.

In the end, the committee voted (15-8) to recommend that the FDA require a “black box” warning that cautions that children taking anti-depressant medications are at an increased risk of suicidal behavior and thinking. A “black box” warning is the strongest warning that can be provided and is printed in boldface type at the top of a medication’s label. The FDA advisory committee also recommended that the FDA require that pharmacists distribute patient information with warnings related to use of the medication.

In the wake of this decision, NAMI will develop and disseminate appropriate materials for families and providers that will enhance their understanding of the risks and benefits of treatment options for depression in children and adolescents.

To review a copy of NAMI’s statement that Dr. Duckworth presented to the FDA advisory committee, please go to www.nami.org/enews4-34.

SENATE COMMITTEE CLEARS 2005 BUDGETS FOR NIMH & SAMHSA, NEW FUNDING INCLUDED FOR “MENTAL HEALTH TRANSFORMATION” GRANTS AND CHRONIC HOMELESSNESS

E News from NAMI National : Sept. 22, 2004

On September 15, Senate Appropriations Committee approved a massive $142,317 billion Labor-HHS-Education spending bill for FY 2005. The bill (S 2810) includes the 2005 budgets for important mental illness research and services programs at the National Institute of Mental Health (NIMH) and the Substance Abuse and Mental Health Services Administration (SAMHSA). Overall, the Labor-HHS spending bill is 2% above current year levels. This tight limit means that the budget of most agencies and programs under the bill are either frozen or, in some cases, cut slightly.

The House completed action on its version of the FY 2005 Labor-HHS Appropriations bill (HR 5006) on September 9. The full Senate is not expected to take up its version of the FY 2005 Labor –HHS bill before the expected October 8 pre-election adjournment. The new federal fiscal year is supposed to begin on October 1, therefore requiring temporary continuation of funding at FY 2004 levels until Congress can come back and complete the remaining discretionary spending bills as part of a post-election “lame duck” session in December. The expected result is that the Labor-HHS Appropriations bill will be collapsed into a giant “Omnibus” spending bill for FY 2005.

NIMH

The Senate bill proposes to boost funding for mental illness research at the NIMH up to $1,437 billion. This is $54.3 million above current year funding of $1,381 billion, and $15.8 million above the President’s request and the House level ($1,421 billion). NAMI is extremely grateful for the bipartisan leadership of Senators Arlen Specter (R-PA) and Tom Harkin (D-IA) in supporting increases for NIMH and all the other NIH institutes- above President Bush’s request. The legislative report accompanying the Senate bill also expresses support for efforts in the NIMH intramural program to more effectively target new treatments for schizophrenia and to address suicide among individuals with depression and bipolar disorder.

SAMHSA

The Senate bill includes $44 million is new funding for the Bush Administration’s new state incentive grant program for “Mental Health System Transformation.” This initiative is intended to help states follow through on the July 2003 recommendations in the White House “New Freedom Initiative” Mental Health Commission report. This is the full amount requested by the President for this new program—the House bill includes only $20 million. As noted above, most departments and agencies have seen their budgets either frozen or cut in the bill. New funding for CMHS (without a corresponding cut in existing programs) demonstrates that members of Congress are beginning to pay attention to the fragmented and underfunded public mental health system.

Under the Administration’s “Mental Health Transformation” proposal, funds would be allocated to states on a competitive basis to support the development of comprehensive state mental health plans to reduce system fragmentation and increase access to evidence-based services that promote recovery from mental illnesses. States would be required to use funds to develop plans that cut across multiple systems such as housing, criminal justice, child welfare, employment and education.

In addition, the Senate bill adds $10 million in new funding for services in permanent supportive housing for individuals with mental illnesses and co-occurring substance abuse disorders who have experienced chronic homelessness. This funding is meant to coordinate with permanent housing programs developed by HUD as part of an overall Bush Administration strategy to end chronic homelessness within the next decade. NAMI strongly supports this initiative.

Most other programs at CMHS are funded at the same level recommended in the House bill or in the Presidents’ request for FY 2005, including:

  • PATH- a $5 million increase, boosting FY 2005 funding to $55 million. PATH is a formula grant program to the states that fund outreach and engagement services for homelessness individuals with severe mental illnesses (CMHS estimates that this increase will result in 154,000 homeless individuals with severe mental illnesses being served).

  • Mental Health Block Grant- CMHS’s largest program (a state formula grant program), would receive a $2 million increase under the Senate bill (boosting funding to $436 million).

  • Children’s Mental Health- Funded in the Senate bill at the President’s request of $106,013 million, a $3.659 million increase,

  • $3 million for continuation of the National Suicide Prevention Resource Center, and

  • PAIMI- the protection and advocacy program would receive a $400,000 increase in the Senate bill, up to $35 million.

Finally, CMHS’s own discretionary budget- known as Programs of Regional and National Significance (PRNS)- would increase under the Senate bill to $303.1 million. This is $62.2 million above the FY 2004 level and includes the $44 million in funding for the “Mental Health Transformation Initiative “ and the $10 million for chronic homelessness. The Senate bill, like the House bill, also directs CMHS to restore proposed cuts in the President’s budget to the Jail Diversion program $7 million and the Elderly program ($3 million).

NEW REPORT PROMOTES INTEGRATED CARE FOR PEOPLE WITH SERIOUS MENTAL ILLNESS

From the Bazelon Center for Mental Health Law, Aug. 3, 2004

Washington (Aug 3, 2004) - Integration of physical and mental health services can both improve health outcomes and consumer satisfaction and promote efficiency in healthcare financing, according to a new report by the Bazelon Center for Mental Health Law.

The center reviewed numerous studies over the last 30 years documenting high rates of serious physical health-related problems and premature death among people with serious mental illnesses. Despite these risks, detection of physical health problems in this population is poor, the studies show.

“The wall between physical and mental healthcare perpetuates a public health crisis,” said Chris Koyanagi, the report’s author and policy director at the Bazelon Center, a Washington-based advocacy group. “The lack of integration can leave chronic medical conditions undetected and lead to higher healthcare costs and needless suffering.”

Titled Get It Together: How to Integrate Physical and Mental Health Care for People with Serious Mental Disorders, the Bazelon Center report lists barriers to integration of services, discusses models studied by the center in programs around the country and offers recommendations for integrating primary and mental health care.

The center found an encouraging number of approaches to integrated care. Two models- unified programs and primary care embedded in a program for people with serious mental illnesses – are described as particularly effective in:

  • Promoting greater access to prevention and treatment services;
  • Reducing reliance on emergency rooms and other crisis-oriented health services;
  • Improving consumers’ satisfaction with services; and
  • Improving cost-effectiveness.

The report also spells out policy initiatives for service delivery, financing, monitoring and quality assurance that public health and mental health systems can adopt to nurture integration of services through each of the models.

“In the long term, integration is likely to result in far more efficient use of both physical health and behavioral health resources,” said Koyanagi. “Now policymakers, providers and advocates need to get it together to foster such integration.”

The full report can be purchased online at http://store.bazelon.org or by calling the Bazelon Centers’ publications desk at (202) 467-5730, ext. 110

The Bazelon Center for Mental Health Law is a national legal advocate for people with mental disabilities.

EARLY-ONSET OF SCHIZOPHRENIA MAY BE CAUSED BY “FAULTY WIRING”
Reintegration Today, Spring 2004

At the annual meeting of the Radiological society of North America, a team from Albert Einstein College of Medicine in New York presented research that indicates some cases of schizophrenia in young people occur because of faults in brain connectivity.

The researchers conducted a study that used a new type of imaging technology called diffusion tensor imaging (DTI) to study the brains of 12 young children with early-onset schizophrenia. The team then compared the young consumer’s brains with those of nine healthy children of like ages.

The study led by Manzar Ashtari, Ph.D., associate professor of radiology and psychology at North Shore-Long Island Jewish Health Systems and Albert Einstein Medicine in New York, found pronounced anatomical differences in the so-called white matter area of the brain, located in the frontal lobe. The white matter area controls emotion and many thinking processes. The anatomical differences or abnormalities, apparently disrupt transmission of the signals that regulate behavior.

Dr. Ashtari commented on the findings. “It’s a problem with connectivity,” she said. “It’s like the wiring in a house, only we are looking at the network of the brain- how the brain in wired.”

Although young adults are not usually diagnosed with schizophrenia until symptoms become evident in adulthood, the discovery of a “connectivity” problem in children made by Dr. Ashtari and her team may be a key to early detection and treatment of the disease.

Mental Health Advocates Call for Restoration of Funds

By Diane Flagg, Gannett News Service, Oct. 23, 2004, Albany

A coalition of state mental health advocacy groups urged state leaders to roll back nearly $8 million in cuts to community mental health services on Tuesday.

“ This is the wrong place to cut. These are services that cost little and have a great impact ,”said Harvey Rosenthal, executive director of the New York association of Psychiatric Rehabilitation Services.

Counties across the state are big rushed to cut back or eliminate emergency, advocacy, outreach, family support, homeless, transportation and local administrative services.

Rosenthal said that making the cuts now before the state legislature and the Governor could negotiate a restoration in mid-November would leave “some of our most vulnerable New Yorkers out in the cold this winter.”

The groups argued that the state was shooting itself in the foot by cutting funds, because a reduction in services would cause more expensive hospitalizations and emergency room visits for people needing those services.

Mental Illness tied to greater risk of some cancers

Patients with psychiatric disorders at higher risk of brain, lung cancer, and at younger age

By David Hodges, Medical Post, Oct. 26, 2004, Volume 40, Issue 40

Adults with mental disorders are at increased risk for lung and brain cancer, and will develop these cancers at a younger age, compared with adults without mental illness.

These findings, published in ht journal Psychosomatic Medicine, underscore the need for smoking cessation counseling in patients with mental illness, and also suggest brain tumors may cause the early development of mental symptoms in this population

The higher incidence of lung cancer seen in the study was not surprising because it is known that people with mental illness smoke more than the general population, said researcher Dr. Caroline Carney, an associate professor of psychiatry and medicine at the Indiana school of medicine.

However, she said the association between mental disorders and brain cancer as less expected. “These findings suggest that really the first instance of brain tumors are mental, and new mental symptoms occurring at atypical times should merit a medical workup.”

To determine whether people with mental disorders are at increased risk for subsequent cancer development compared to people without mental disorders, Dr. Carney and colleagues reviewed the administrative claims data for 772,139 adults between the ages of 18 and 64 living in Iowa and South Dakota who filed at least one medical claim from 1989 to 1993.

Of these, 72,140 were assigned to the mental cohort and 649,999 to the control cohort. The mental disorder cohort include people with one psychiatric hospitalization, one outpatient psychiatrist visit to two outpatient mental health claims occurring at least six months before a cancer claim.

After adjusting for age, the results showed that patients with mental disorders were no more or less likely to develop cancer than those without mental disorders.

However, it was found that patients with mental disorders did develop cancer at younger ages, and had increase odds of brain tumors and lung cancer.

“This work is a piece in the larger puzzle of understanding the relationship between mental disorders and physical health.” Dr. Carney said.

PEOPLE, PLACES, EVENTS

Welcome to the NAMI Family:

  • Joann Genthner Richard Ferguson Jill Robinson
  • Richard and Vicki Wehrman Cecelia Smith Donna Rubin
  • Margee Lasiewicki Barbara Remscheid Sarah Huddelson
  • Maryann Huddelson Henry and Nelly Sewell Gerald Archibald (BONADIO & CO.)
  • Kelly Stirk Mary Ellen Hecht (COMPEER) Chip and Annette Weld
  • Dominic and Barbara Perione Nancy Haskins Beverly and Russell Hilf
  • Aggie Sick Debbi Stark (RPC) Livingston/Wyoming ARC
  • Steven Menez Carrie Fess Kathy Fox
  • Gerald & Pamela Kelly

Family to Family Update:

The Fall session is underway with co teachers Claire Perlman and Pat Sine. Twelve people from eight families are enrolled. Two new leaders were recently trained in Utica (Sherlaine Shelley and Virginia Collins). This makes six NAMI volunteers who can teach the course, , including Jack Goldstein and Susan Snyder. The next class is scheduled for the spring of 2005. For more information about this free 12 week class for family members of those diagnosed with a mental illness, please call Pat Sine at 423-1593.

The class provides information, insight, understanding and empowerment. Many family members describe the impact of taking this course as life changing. The next session will start in March 2005.

HELP WANTED !!

Aaron Taub, treasurer

NAMI Rochester needs a person to serve as Treasurer. I will be having to retire after 6 years in the office, as specified in our bylaws, as well as being scheduled for a hip replacement in February 2005.Therefore we need someone by the end of January. I am willing to work with and train my replacement before that time and be available on a consultant basis after that.

Skills needed:

  • A willingness to do the job
  • Some computer literacy. We can arrange to teach you the Quick Books system used for the accounts

JOB Requirements:

  • Supervise and maintain Financial records for NAMI Rochester.
  • Pay bills as required.
  • Prepare reports for the board for approval of expenses and assist in the preparation of the necessary tax returns.
  • Time required
  • Attendance at executive committee meetings- 2 hours per month.
  • Attend Monthly board meetings 2 hours per month ( You will be a member of the board).

Everything else can be done from your home or office if you have internet access.

Some time each month in the NAMI office meeting and collaborating with the Program Director I currently spend 1-1.5 hours per week at the NAMI office reviewing bills, updating files etc., however that is flexible.

For more information, please call Pat Sine in the NAMI office (585) 423-1593.

NAMI ROCHESTER ON LINE

The Board of Directors is pleased to announce that NAMI Rochester now has its’ own website, www.namirochester.org. We express our sincere gratitude to Rita Cronise, NAMI member, for her leadership in the development of our website and for her willingness and commitment to maintain the site for NAMI. We are looking forward to the added opportunities for outreach and growth that the site will bring NAMI. Check it out and feel free to contact NAMI with suggestions and comments.

UNITED WAY DONOR DESIGNATIONS THE HIGHEST EVER !!!!

NAMI gratefully acknowledges and thanks those who designated NAMI Rochester for the United Way Fall and Spring campaign this year. The total amount designated to us is $10,341. This will be a tremendous asset and enable us to continue our mission of support, education and advocacy to individuals and families affected by mental illness.

The 3rd Annual Jessica Cole Henderson Memorial Lecture

About 150 people attended the lecture on Oct. 5th at the Rochester Academy of Medicine and heard author, Virginia Holman, discuss her life growing up with her mother who had schizophrenia. Virginia told her compelling story, which was documented in her book, “Rescuing Patty Hearst.” Ms. Holman is the recipient of a Roslyn Carter Mental Health Journalism Fellowship, and won the 2003 Outstanding Literature Award from the National Alliance for the Mentally Ill. Virginia spoke about her “nightmarish past with compassion and insight”. Those who attended remarked that she was open and helpful in sharing her experiences growing up with her mother’s mental illness. The audience was very moved by the heartfelt introduction by Tom Henderson, Jessica’s father, and expressed gratitude to him for sharing memories of Jessica’s life and her illness. NAMI is very grateful to Kathy & Tom Henderson, who continue to support this event every year in order to raise awareness about mental illness and its profound impact on all those who are touched by it.

The event was co-sponsored by the Jessica Cole Henderson Memorial Fund, NAMI Rochester, the Rochester Psychiatric Center and the Mental Health Association of Monroe County.

NAMI gratefully acknowledges the support of Janssen Pharmaceutica Co., who provided an educational grant for the even and also provided the delicious buffet. NAMI also wants to thank the others who contributed to the success of the evening: the volunteers who helped, Wegmans Food Markets, Alasa Farms, Heluva Good Cheese, and the Planning Committee ( Bob Riley from RPC, Cindi Licata from the MHA, David Sauter from Janssen and NAMI members: Mary Robbins, Aaron Taub, and Pat Sine

Suggestions are already coming in for next year !!

MEMBERSHIP RENEWALS TO BE IN THE MAIL SOON

NAMI membership renewals will be in the mail in the coming weeks and we ask your help in continuing to support our local affiliate as well as the state and national organizations. The board of directors is announcing an increase of $5 in the annual fee, ( from $25 to $30).

Your $ 30 annual fee entitles you to the local, state and national newsletters and other publications, voting privileges, and discounts on literature and merchandise. Starting in Sept. 2004, we are now being charged for parking in the church parking lot on a monthly basis, and that is the main reason we need to raise the local dues. We will still be forwarding $10 of that to national and $3 to the state. As always, scholarships will still be available for those with limited income.

Note: NAMI Rochester is now a participating agency of the Greater Rochester State Employees Federated Appeal, # 66-0944.

Grievance Process: Please feel free to contact NAMI Rochester at (585) 423-1593, or by writing to us at 111 N. Chestnut St., Rochester, NY if you have any concerns about NAMI Rochester services or supports.

 

NAMI Home Pages
NAMI National | NAMI NYS | NAMI Rochester

NAMI Rochester | Mental Illness | Meeting Times | Current Schedule | Classes | Services Offered | Events | Newsletters | Committees | Help Wanted | Donate to NAMI | Related Links | Contact Us

For questions or comments about this website, contact webmaster: RMCronise@aol.com