Helpful Links

Links to Local, NY State, and National Mental Illness Resources

The Internet contains lots of good information on mental illness diagnosis and treatment.  We also suggest you view our page on What Is It Like To Have A Mental Illness?

The links below were provided by NAMI Finger Lakes members.  Some documents will require the Adobe Acrobat Reader.

Background Information on Mental Illness:

Psychiatric Care in the Finger Lakes and in New York State

Health Problems & Health Care:

Problems Associated with Mental Illness

Other Resources:

Using the Web to Research Mental Illness Treatments and Medications:

Mental Health Care for Military Veterans

  • NAMI Veterans Resource Center – a resource page tailored to veterans, it provides information on military-related mental health issues such as PTSD, suicide, women’s issues, and unique issues faced by culturally diverse populations within the military (African-American, Latino, Asian, and American Indian).
  • National Center for PTSD – Many veterans of the Iraq and Afghanistan conflicts have untreated and/or undiagnosed PTSD – Post-Traumatic Stress Disorder, and the  Veterans Administration has developed this website with information for both patients and their treatment teams.
  • Mental Health Services for Veterans – The Veterans Administration has a 24/7 toll-free hotline that gives any veteran immediate mental health care assistance, and if they are at risk of homlessness, they can connect them with A Homeless Program Coordinator at the nearest VA medical center

What is Mental Illness?

Mental illnesses are biologically based brain disorders.  These disorders can severely disrupt a person’s thinking, feeling, moods, ability to relate to others and capacity for coping with the demands of life.

Mental illnesses are treatable brain disorders – they are not a judgment.

Mental illnesses can affect persons of any age, race, religion, or income. Mental illnesses are not the result of personal weakness, lack of character, or poor upbringing. They cannot be overcome through “will power” and are not related to a person’s “character” or intelligence.

Mental illnesses include such disorders as:

  • schizophrenia
  • major depression
  • bipolar disorder (also known as manic depression)
  • schizoaffective disorder
  • borderline personality disorder.
  • obsessive-compulsive disorder

The following links provide more information on mental illnesses:

Recommended Books on Mental Illness, Family Issues, and Medications

Our members have found the following books to be particularly useful.  The links point to Amazon.com pages containing book information and reader reviews.

Schizophrenia, Depression, and Bipolar Disorder:

  • Surviving Manic Depression by Dr. E. Fuller Torrey – an excellent, readable and detailed book on manic depression (bipolar disorder).

Family Issues with Mental Illness:

  • When Someone You Love Has a Mental Illness by Rebecca Woolis – an easy reading “how to” book written for people with seriously ill relatives.  Provides many useful tips on managing family life while caring for an ill relative – in particular it has good chapters on how to talk with your relative;  how to handle holiday & family activities; and dealing with doctors and hospitals.
  • The Family Support Tool Kit: A Resource to Assist Professionals in Empowering Parents Living with Psychiatric Disabilities by the Mental Health Association of New York State.   While intended for treatment professionals, it provides many useful tips for family members worried about relatives who have dependent children.

General Information on Medications for Controlling Symptoms of Mental Illness  

  • The Essential Guide to Psychiatric Drugs – Jack M. Gorman –  The “Meds” are important tools for controlling the symptoms of mental illness, and this book gives an easy-reading overview of the major drug classes, as well as their side-effects.  Note that this book was last updated in 1995, so it does not cover recently introduced medications.
  • Mental Health Medications – This free National Institute of Mental Health guide describes the types of medications used to treat mental disorders, side effects of medications, directions for taking medications, and includes any FDA warnings.

Detailed Information on Medications for Controlling Symptoms of Mental Illness

  • Drugs@FDA allows you to search for drugs by by Drug Name, Active Ingredient, or Application Number, and contains drugs not found in the above index.
  • Generic vs. Newer (expensive) Antipsychotics  – the National Institute of Mental Health (NIMH) funded a study called CATIE (Clinical Antipsychotic Trials of Intervention Effectiveness). This study compared the effectiveness and side effects of five antipsychotics used to treat people with schizophrenia.

In general, the study found that the older medication perphenazine worked as well as the newer, atypical medications. But because people respond differently to different medications, it is important that doctors carefully design treatments for your loved one.

Psychiatric Care in Ithaca, NY and Nearby Cities

Ithaca is a small town with a limited number of psychiatrists and psychiatric care facilities (which we list below).  If you can’t find the help you need locally, then consider contacting other NAMI chapters about doctors and facilities in their areas.

Note that some places do not have facilities for keeping mentally ill patients for long periods of time.  (Sometimes it can take weeks or months before doctors can find a medicine to alleviate a patient’s symptoms).

As you browse these links, you’ll see words such as  “Outpatient”, “Acute care”, and “Long-term care”, and “Forensic”.   We list their definitions below:

  • Outpatient  – psychiatric patients can visit for diagnosis or treatment, but there are no facilities to stay overnight.
  • Acute care  –  patients can stay at the hospital for short periods – days to perhaps a few weeks.
  • Long-term care –  patients stay for long periods of time (weeks to months or longer).
  • Forensic – facilities that care for inmates of the New York State prison system.

 

Ithaca, NY – the home of NAMI-Finger Lakes, and its mental health resources includes:

  • Tompkins County Mental Health Services – TCMHS provides outpatient services and medications to county residents who do not have health insurance (call their phone # and ask to speak with the intake counselor).  Note that they have a dual-diagnosis counselor on their staff (Mr. Shayne Jayne)One the services they provide is a residential apartment program for people recovering from mental illness.  This program is contracted through Lakeview  Mental Health Services, with facilities in Ithaca NY and other local communities.
  • The Mental Health Association in Tompkins County  – is an advocacy organization whose mission is to develop and support the active involvement of ordinary people (including providers, family members and recipients of mental health services) in all aspects of mental health.They are an excellent source of information on local mental health care options (they have a list of psychiatrists practicing in town),  and they  know the intricacies of Medicare, Medicaid, and Social Security Disability and Social Security Income.  They also provide respite services, and they also operate SPACE – (Starlight Peer Advocacy Center for Empowerment) – a drop in center for mental health consumers.Note that SPACE director Gary Tracy hosts a weekly 1/2 hour TV show dedicated to mental health issues. This show – called “Starlight Presents” is  broadcast on PEGASYS Community Access Television for Tompkins County, on Cable Channel 13.
  • Cornell Minds Matter – Minds Matters is Cornell University’s only student run mental health awareness and advocacy organization.  They work to promote awareness of mental health issues on campus, reduce stigma associated with mental illnesses, and improve the overall emotional health of Cornell students.They sponsor scheduled talks and programs, and they invite anyone (student or not) to participate. They also run a Cornell Minds Matter Facebook Page and a Listserver (see the details on their web page
  • Tompkins County Office of Employment & Training – Kevin Nickerson is the disability program navigator at the Tompkins County office of employment. He is very, very knowledgeable about the disability lawsPhone 607-722-7570 ext. 136
  • Cornell University Office of Human Resources Employee Assistance Program. The service is free and open to Cornell employees and retirees. Phone 607-255-1531 or  254-4961 to make an appointment.  One of their counselors is  Jim Morris, MSW, LCSW, Clinician and Workplace Consultant.

Auburn, NY – Auburn is 45 minutes north of Ithaca.  Its resources include:

Binghamton, NY – Binghamton is one hour south of Ithaca, and its resources include:

  • NAMI-Broome County – (The Binghamton, NY-area NAMI chapter)
  • Greater Binghamton Health Center (formerly known as the Binghamton Psychiatric Center).  Seriously ill people from Tompkins County are often sent here because it is the area’s long-term care facility (sometimes it can take weeks or months before doctors can alleviate a patient’s symptoms).  By comparison, Ithaca’s Cayuga Medical Center has an acute-care Behavioral Health Services Department that can only do short-term stays.

Buffalo, NY  – Buffalo is three hours west of Ithaca, and its resources include: 

  • Baker Victory Services – A family-oriented facility for at-risk teens with mental illness.  Services include an RTF ( Residential Treatment Facility) for at-risk teens with mental illness. One of our members – who had a child stay at Baker Victory – has been extremely pleased, and says that you can’t find a better family-oriented RTF.
  • Pathways, Inc. – Pathways provides wrap-around services for children & teens who are at risk of institutionalization due to mental illness. Families work closely with an Intensive Case Manager.

Corning, NY – Corning is 45 minutes east of Ithaca, and its resources include:

Cortland, NY – Cortland is 30 minutes north of Ithaca.  Its resources include:

Elmira, NY –  Elmira is 45 minutes southwest of Ithaca, and its resources include:

  • St. Joseph’s Hospital and its acute-care  Behavioral Science Unit
  • Elmira Psychiatric Center – a New York State long-term care facility that treats adult and children.  Their facility includes an 60-bed adult unit, an18-bed pediatric inpatient facility , and a 20-bed geriatric unit.   The Elmira Psychiatric Center is a satellite facility to the Greater Binghamton Health Center.

Rochester, NY – Rochester is a city two hours northwest of Ithaca, and its resources include:

  • NAMI-Rochester   (The very active Rochester, NY NAMI chapter)
  • Rochester Psychiatric Center  – a New York State facility that serves adults.  Includes inpatient services for adults and children, and there is a separate forensic facility for long-term care.
  • Strong Memorial Hospital – a hospital with an acute care facility, and that has ties to the Rochester Psychiatric Center for long-term care.

Syracuse, NY – Syracuse is a city one hour north of  Ithaca, and its resources include:

Paying for Health Care in Tompkins County

Many families do not have the financial resources to pay for their ill relative’s psychiatric treatment.  It is also very common these individuals to have additional health problems unrelated to their mental illness.

The Cancer Resource Center of the Finger Lakes  (formerly the Ithaca Breast Cancer Alliance) has produced Paying for Health Care in Tompkins County, an excellent guide to the many local and state options for obtaining medications and insurance coverage.   Regarding cancer, people suffering from mental illnesses are also at a higher risk of developing cancer.

In addition, we recommend seeing the people at  The Mental Health Association in Tompkins County, as they have considerable knowledge of government aid programs.

Special Care, Recovery, & Diagnostic Facilities for Younger and Older Patients

Mental illness can devastate a young person’s confidence and self-esteem.  This can prevent them from pursuing a normal life progression such as school, professions, and family.

Farm-based treatment programs combine health care & structured work to rebuild that confidence and teach them to manage their illnesses. The article “Farming For Health and Well Being” gives a nice overview of why it works.

Here are some organizations that follow that philosophy:

Eastern US

  • Gould Farm  –  an excellent farm-based recovery/rehabilitation program located in Massachusetts.   Focuses on adults 18 & older.   Several support group members have sent ill relatives there with excellent results (very friendly, professional, and supportive).
  • Cooper-Riis – a “spinoff” from Gould Farm located in western North Carolina.
  • Hopewell Inn – a therapeutic farm community located in Mesopotamia, Ohio, (just east of Cleveland).  Same treatment model as Gould Farm.

Western US

  • Casas de Vida Nueva – Located in Albuquerque, NM.  Started by a mother whose son attended Gould Farm, and it follows the Gould/Cooper-Riis models.  Employs a permaculture philosophy in its farming practices.  They are currently working to start up their program.

We’d also suggest checking the American Residential Treatment Organization – an organization that promote and enhance residential mental health treatment.  Their membership directory points to facilities all over the United States – some are farm-based, some are not.

Finally, there are some New York-based organizations that could help families dealing with eating disorders and mental illness in older adults:

  • Ophelia’s Place –  Syracuse-based Ophelia’s Place is a resource and support center for those suffering from an eating disorder.  It was started by a mother who nearly lost two daughters to anorexia, and it  provides information on treatment, insurance, education, prevention and support groups for those with eating disorders, and also for their family and friends.
  • Sharon Hospital Behavioral Health Center –a special  center focused on elderly patients,.  They can do testing to determine whether problems are due to mental illness or to other causes such as Alzheimer’s and/or dementia.

 Resources for Checking out Hospitals, Doctors and Treatments

A common family worry is whether the doctor is prescribing the correct treatment for their loved ones.  The following resources could help you research both treatments and doctors.

  • Psychiatry Practice Guidelines – various US organizations have developed practice guidelines for different mental illnesses.  These free downloadable documents could be useful discussion points with your loved one’s psychiatrist.In this list you will find references to the Texas Medical Algorithm Project which produced guidelines for schizophrenia, Major Depression, and Bipolar Disorders.    However, you should also be aware that there is controversy over these treatment guidelines.  Specifically, this Mother Jones magazine article  “Medicating Amanda” claims that large pharmaceutical companies were overly involved in formulating the guidelines, and that the treatment recommendations are biased towards newer (and more expensive) medications, rather than low-cost generic drugs.
  • Ratings for New York State Hospitals  New York State rates hospitals for quality of certain medical procedures.  Of particular interest are their statistics on alcohol and drug detoxification programs, since many mentally ill people are “dual-diagnosis” – both mentally ill and addicted to alcohol or narcotics.The site’s other very useful feature is that it allegedly has the names of all doctors of medicine and osteopathy in New York State.  You can search by name, specialty, and county/city, and see if a particular physician has any malpractice suites or other legal problems.
  • Ratings for National Hospitals – the federal government Hospital Compare site lets you look up a hospital’s treatment success statistics, and also lists patient survey results.   While the data focuses on  “physical” ailments as heart attack, diabetes, and heart operations, it is still relevant because people diagnosed with major mental illnesses are at a higher risk for all medical ailments.  In addition, the patient surveys could give you an idea of the general hospital management, which would could affect care in psychiatric care units.
  • Links Provided by Consumer Reports in their September 2009 edition, page 23. All sites listed below are free – except for the Consumer Reports site.
    • Agency for Healthcare Research and Quality  – Provides links to more than 200 examples of Report cards on hospitals, health plans, doctors, and other health providers. Searchable by state, type of report, or report card sponsor.
    • Centers for Medicare & Medicaid Service – Compares hospitals based on surveys of patient experiences.  Comparisons include procedure volumes, death & readmission rates, and how often hospitals provide care known to get good results.  This survey doesn’t include facilities run by the Military & Veterans Health Administration.
      Commonwealth Fund – Free performance data on hospitals nationwide from a private foundation.  Users can search for hospitals by state, county, ownership, size, or hospital type.  The site incorporates Medicare’s patient survey and hospital quality measures.  You can compare a hospital’s quality scores against national/state benchmarks.
    • Consumer Reports – (requires a subscription) – the Consumer Reports website now has a Patient Ratings section, which compares hospitals based on overall satisfaction as well as specific features from the Medicare surveys.
    • The Joint Commission – This site is sponsored by a nonprofit group that inspects and accredits most U.S. hospitals at least every three years.  Allows comparisons between hospitals.
    • Leapfrog Group – This nonprofit employer-advocacy group rates hospitals on overall patient safety and the safety of selected procedures.  The data comes from an annual survey of 1,276 general acute-care hospitals that comprise 53% of the hospital beds in 37 major US metropolitan areas.  You can compare safety practices that affect most hospital patients – such as computerized medication ordering – and safety practices associated with high-risk procedures – such as heart bypass surgery, angioplasty, high risk delivery, etc.
    • US News & World Report – Free online rankings of medical centers in 16 specialties.  The site also ranks children’s hospitals in 10 specialties.

Major mental illness can cause other health problems

On average, people with major mental illnesses live 25 years less than the general population – and the major health risk is NOT suicide.  The major risks are diabetes complications; dardiac, respiratory, and infectious diseases; and an increased cancer risk.

However, simple lifestyle changes can prevent these problems, and Our  Increasing The Life Span page contains “how to” information provided by the New York State Office of Mental Health.

 When your Relative is Homeless/Missing

  • Mental Health Services for Homeless Veterans (US Department of Veterans Affairs) – he Veterans Administration has a 24/7 toll-free hotline that gives any veteran immediate mental health care assistance, and if they are at risk of homlessness, they can connect them with A Homeless Program Coordinator at the nearest VA medical center

Dual-Diagnosis (both diagnosed with a mental illness & addicted to drugs/alcohol)

An estimated 29% of the mentally ill abuse either alcohol or drugs.  To recover fully, the person needs treatment for both problems.  The best approach is to treat both problems simultaneously, which requires teamwork between the addiction counselors and the psychiatrists.

The following links could help if your ill relative is dual-diagnosis.  Also note that  Tompkins County Mental Services has a dual diagnosis counselor on staff (Mr. Shayne Jayne).

  1. Fact Sheet on Dual-Diagnosis – compiled by the National Mental Health Association.
  2. Dual Diagnosis and Integrated Treatment – This National NAMI web page discusses dual diagnosis treatment.  The page includes links to online discussion groups and clinical trials of dual-diagnosis treatments.
  3. Dual Diagnosis Toolkit – this easy-reading British manual was written for people working with adult dual-diagnosis clients.  Lots of good information – especially about the practical difficulties in treating dual-diagnosis patients. And it is also a bit sad – even with National Health Care, many British dual-diagnosis clients fall between the cracks – just as they do in the United States.
  4. Friends of Recovery New York Family Resource Guide

 Mental Illness and The Criminal Justice System

Estimates show that 10 to 15 percent of jail and prison inmates have a serious and persistent mental illness. In New York State that translates into between 10,000 and 15,000 persons. Many of these people are in jail for minor violations, and should be treated through the mental health system, rather than sent to prison.

The following links could help if your ill family member is arrested:

  • NAMI New York State Criminal Justice Advocacy Training Program – provides direct assistance to families when a family member with mental illness encounters the criminal justice system. Consultation, supportive assistance and direct intervention services are provided when a family member is arrested, faces court action or is incarcerated in a state or local correctional facility.

NY State and National NAMI Organizations

NAMI New York State – the New York State NAMI is very active & supportive of the local NAMI chapters.  Their web site contains lots of good New York-specific information. Of particular note are:

  • Navigating the Mental Health Care System  – excellent overview of issues that families will face in dealing with their relative’s illness.  Note that this was originally written in 2001, so the contact information may be out of date.
  • “Helping Families to Help their Loved Ones” – a policy paper that discusses the many reasons why families should be closely involved in mental health care treatment.
  • PACT – Program for Assertive Community Treatment  – an excellent and cost-effective program for helping people keep themselves healthy. PACT Teams and can visit your loved one at home to assist them in heading off relapses and helping them address related health problems.

There is no PACT headquartered in Tompkins County (Ithaca), but there is one in Syracuse, NY and there is a Rural Pact in Chemung county. You can look for team locations through New York State ACT Site.

NAMI National – The National NAMI web site is a wealth of information & services – be sure to use their Find function as part of your search.

Estate Planning – What Happens To My Relative After I’m Gone?

Special Needs Estate Planning Guidance System – NAMI National’s  web pages on how to plan your estate so that your ill relative is cared for after you are gone.

Issues discussed include administration (who handle the estate);  issues your family must address (goals for your loved one);  information gathering;  and an overview of trusts.

Of particular interest are Special Needs Trusts.  These trusts let you leave money to your ill relative without endangering their eligibility for government benefits.  It also gives you a mechanism for “metering” money to relatives who, due to their illness, cannot responsibly handle large sums of money.

Using the Web to Research Mental Illness Treatments and Medication

When standard treatments are not working for your loved one – or the doctors are not providing the information you need – then you must search for answers on the web.

Searching Medical and Scientific Literature Websites

  • MedLine Plus –  a government directory to health information – good way to get pointers to useful and relevant web pages throughout the world. This includes on-line dictionaries of medical terms and medications.
  • PubMed  lets you search the abstracts of all major medical or biomedical scientific journals.  It is a fast way to scan the latest research.  Some of the cited papers are available for free online (though some charge for reprints).   A cheaper alternative is to  contact Cornell’s libraries to see if they carry the cited journal in print or as an electronic journal (which lets you xerox it or download it to your USB drive).

Organizations Developing New Treatments & Medications:

  • NARSAD National Alliance for Research on Schizophrenia and Affective Disorders) supports scientific research to find better treatments and ultimately prevent severe mental illnesses.   The supported research covers all areas of mental illness – not just schizophrenia and bipolar/depression.
  • The Stanley Medical Research Institute – a research organization focused on schizophrenia and bipolar disorder.  Approximately seventy-five percent of  their  expenditures go towards the development of new treatments for schizophrenia and bipolar disorder. The remaining funds are earmarked for research on the causes of these illnesses.  Their web sites describes the ongoing research, and it also has a very good Links to over web sites dealing with schizophrenia and bipolar disorder.
  • The National Institute of Mental Health– The National Institute of Mental Health is the major federal funding agency for research on mental illness.  Their web site has a lot of information on all mental illnesses, as well as pointers to the researchers they are funding.  They also have active internal research programs that need clinical trial volunteers.

Web Sites for Borderline Personality Disorder

Borderline Personality Disorder is a relatively new mental illness classification, and there is much ongoing research to develop both  reliable diagnostic methods and effective treatments.  These links list organizations and web pages devoted to BPD research and treatment.

  • Borderline Personality Disorder Resource Center (a New York-Presbyterian Hospital web site).  This site provides basic information on Borderline Personality Disorder plus pointers the treatment programs at the hospital’s Personality Disorders Institute. They also list a 48-minute documentary film on BPD (available for $20 through their web site).
  • TARA APD – The Treatment and Research Advancements Association for Personality Disorder, TARA APD, is a 501 C3 not-for-profit organization whose mission is to foster education and research in the field of personality disorder, specifically but not exclusively Borderline Personality Disorder (BPD),  Their web site provides pointers to ongoing BPD research projects and support resources.

 

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