From
a pamphlet by Consumers and Families for Psychoeducation,
345 East 57th St. New York, NY. 10022-2952
212/317-0716 FAX 212/317-0627 jdthcrrngtn@aol.com.
Please send them your comments.
Editor's
Note: This pamphlet was originally written for residents
of the New York City area, but the information provided
is applicable throughout New York State. Please consult
your local NAMI-NYS affiliate
to obtain relevant addresses and phone numbers.
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Table
of Contents:
Page
1:
HARDEST EXPERIENCE OF YOUR LIFE
REALITY ABOUT WHAT THE MENTAL HEALTH SYSTEM CAN DO
WHAT CAN YOU GET FROM THE SYSTEM?
GET ENTITLEMENTS FOR YOUR LOVED ONES
Page
2:
HOW CAN YOU ACCESS THE SYSTEM?
HOW TO SUCCEED WITH MENTAL HEALTH PROFESSIONALS
EDUCATE YOURSELF
Page
3:
DEMYSTIFYING MEDICATION
YOUR LOVED ONE DOESN'T TAKE THE MEDICATION
NEGATIVE AND POSITIVE SYMPTOMS
DISCHARGE PLANNING
Page
4
HOW TO
SUCCEED WITH YOUR MENTALLY ILL LOVED ONE
PROTECTIONS
AND OPPORTUNITIES FOR YOUR LOVED ONE
LOOK AFTER
YOURSELF AND YOUR FAMILY
HARDEST
EXPERIENCE OF YOUR LIFE.
Finding out your loved one has a mental illness is a staggering
experience. This is a time when you may, not realizing that
mental illness is a biological disease, unfairly blame yourself.
Meanwhile, great demands will be made of you. You have been
plunged into a whole new world without a compass, and you
may very well have to be the guide. Overnight you must become
skilled at how to access services, navigate the system and
deal with your and your loved ones' emotions.
The
good news: there is immediate help. The National Alliance
for the Mentally Ill, (NAMI), a national organization with
20 affiliates in New York City alone, was created by and for
the parents of the mentally ill and their loved ones. NAMI-NYC
Metro can be contacted by calling (212) 684-3365. TARA, the
association for Personality Disorder (1 888-4-TARA) offers
a hotline, workshops and advocacy. Hopefully, this brochure
will reach your family's earliest mental health crisis.
REALITY
ABOUT WHAT THE MENTAL HEALTH SYSTEM CAN DO.
-
It has some modalities that "work" but there are no sure fire
"fixes" or cure-alls.
-
Not everything is known about how the brain works, although
medications have advanced and are able to target specific
symptoms.
-
Proper medications/dosages/combinations are learned, to some
extent, through trial and error and the particular person's
response to them.
-
Because of managed care, hospital stays are as short as possible,
usually 21 days, unless you can prove that an individual is
at risk of being harmful to him- or herself or others.
WHAT
CAN YOU GET FROM THE SYSTEM?
With your loved one's consent, you have a right, as is true
of any medical or psychiatric service delivery:
-
To have disclosure about who will be treating your loved one.
-
To have information about the working diagnosis: how it was
arrived at (role of family and personal history, current symptomology
and lab tests).
-
To know information about the benefits as well as the risks
associated with each treatment and the appropriate forms of
available treatment, not only the ones recommended by the
practitioner. This includes: how and why a particular medication
at a particular dose is prescribed; how one evaluates its
efficacy; what alternatives will be pursued given various
outcomes; what ancillary treatments exist, including psychosocial
and psychoeducational rehabilitation and vocational training.
-
To participate in treatment planning.
-
To refuse treatment, if you do not believe in the efficacy
of the treatment and if you are authorized to make decisions.
In
cases where your loved one is not capable/competent to decide
for him- or herself, it is advisable to gain guardianship
authority for treatment decisions.
Remember,
the New York State Office of Mental Health guidelines governing
the "Rights of Inpatients" state: "Generally no information
about you (the patient) may be given out unless you or your
legal representative give written permission." In such extenuating
circumstances as a psychotic episode, sound judgment dictates,
however, that it's no time to rigidly bar communication with
families.
GET
ENTITLEMENTS FOR YOUR LOVED ONES.
They will need supplemental income and health coverage if
their mental illness is preventing them from working. The
patient may file for Supplemental Security Insurance or Disability
Insurance, as well as Medicaid or Medicare coverage. To find
out what the patient qualifies for, call the Advocacy Counseling
and Entitlement Services (ACES) at (212) 614-5552. Or, you
can go to your local Social Security Office to apply. To reach
Medicaid, call (718) 291-1900. To reach Social Security, call
1-800-1213. Be prepared for tedious bureaucracy, but it's
well worth the yield of essential services for you and your
family over the long term, which would otherwise not be affordable.
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