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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
HOW
CAN YOU ACCESS THE SYSTEM?
Through the National Alliance for the Mentally Ill (NAMI-NYC
Metro) 212-684-3365 in NYC you can find out about information
meetings, websites, support and advocacy groups. The first
line of defense is the "Helpline," (212) 684-3264, which is
in operation from 11:00 a.m. to 4 p.m. Mon. - Fri, where a
wise and experienced parent will guide you and answer questions.
NAMI's support meetings offer counsel, networking and an opportunity
to discuss any issues you are grappling with. Their website
(naminyc.nami.org)
provides a wealth of information about mental illnesses, medications
and mental health resources. NAMI's information meetings allow
you to hear from the top professionals in the agencies that
assist with emergency services, discharge planning, entitlements,
estate planning, housing and legal services - hard-found information
and counsel. NAMI's advocacy program allows you to have your
voice heard with legislators and directly improve the opportunities
for your loved one.
TARA,
a national association devoted to personality disorders, has
pioneered raising public awareness about this least understood
illness. Its hotline, workshops, educational seminars, symposia,
teen groups advocacy and referral service, uniquely position
it to provide all-round support to families. TARA performs
the valuable service of raising awareness about personality
disorder with legislators, mental health systems and policymakers
and advocating for its appropriate treatment and parity with
other disorders. You may find your loved one may have one
of the personality disorders as second diagnosis, so it's
crucial to both understand and be on the lookout for it, as
it can be overlooked by clinicians. Contact: 1-888-4-TARA
APD.
The
New York State Office of Mental Health establishes guidelines
for licensure of mental health care facilities. From their
website (www.omh.state.ny.us/policy),
you can obtain "the policy and regulations governing the operation
of residential programs for adults" required for licensure.
One
of The Office of Mental Health's eight "Best Practices" which
sets standards for the licensing of psychiatric facilities
is "family and support networks." Complaints? Call the OMH's
Customer Relations Department can be called at (800) 597-8481.
The address is Office of Mental Health, 44 Holland Avenue,
Albany, New York 11229. The OMH is funded by state taxpayer
money and is ready and willing to serve their family stakeholders.
The
Commission on Quality of Care is an independent state agency
that acts as a watchdog over services for persons with disabilities.
If you have a complaint about a mental health care facility,
inpatient or outpatient, you can call them as well and they
will investigate: 1-800-624-4143.
Some
examples of additional New York resources: 1 800 LIFENET is
a crisis, information and referral network for people with
emotional and substance abuse problems run by the New York
City Department of Mental Health (Mental Retardation and Alcohol
Services). An experienced referral specialist will listen
to the problem and assess the situation and give referrals
based on their broad database of private and public community
resources.
HOW
TO SUCCEED WITH MENTAL HEALTH PROFESSIONALS.
Show them that you are informed and cooperative.
-
Be firm with your points; put them in writing, to begin a
paper trail should you need to register a complaint later.
-
Become informed about mental illness and the mental health
system so you know what to ask for and how to ask for it.
-
Explore how you and your family are dealing with the illness
and the feelings it brings up in you. Much can be accomplished
at NAMI support meetings and psychoeducation meetings.
-
Be aware of the specific part of the OMH Official Policy Manual
and the Mental Hygiene Law that substantiates your rights.
By law, families must "have full opportunity to participate
as informed and indispensable partners with mental health
providers in the treatment and rehabilitation of their family
member" (invoke OMH Official Policy Manual PC-1050). This
is reinforced by Section 29.13 of the Mental Hygiene Law,
requiring the facility to involve families in the "development
of the treatment plan" and any revisions, with the patient's
consent.
To
some degree you will get the treatment and services you insist
on, and that requires you know to what they are and keep careful
documentation, in the case of any defaults.
EDUCATE YOURSELF RIGHT AT THE HOSPITAL AND/OR THROUGH NAMI'S
FAMILY-TO-FAMILY
Research shows consistently positive treatment outcomes for
the family and their loved one receiving nine months of psychoeducation
(22 controlled studies since 1980). We're talking about reducing
readmission to hospitals by more than half, reducing social
disability, increasing patient employment (by 60% when a vocational
component is included), lightening the burdens of care-giving
and improving families' overall health.
Since
the more relapses your loved one has, the harder it is for
him or her to recover, the reduction of rehospitalization
is a crucial goal. Collaborative and participatory decision-making
for patient, family and clinician at every stage of the illness
is critical for recovery.
All
of these essential benefits depend on families and their loved
ones getting "psychoeducation" from the moment of first hospitalization.
The Office of Mental Health Official Policy Manuel (OMHPC-1O5O),
authorizes hospitals to "develop educational and training
opportunities to foster the philosophy and practice of families
as partners in treatment" and each "facility must provide
for an ongoing support program to serve as follow-up to the
initial orientation program." (Complain to OMH Customer Relations:
(800) 597-8481, if they don't.) The Joint Commission for Accreditation
of Healthcare Organization's (JCAHO) (PF 6-9), stipulates
that facilities' written plans must include "Programs, written
materials for families and family support programs to provide
educational and informational opportunities to families in
treatment." (Call JCAHO's Office of Quality Monitoring (630)
792-5636, if they don't). These two bodies have the power
of licensure and accreditation. Without licenses and accreditation,
hospitals and providers can't operate. This is the time to
use your advocacy power and fight for this benefit so crucial
for you and your loved ones' future life.
NAMI
offers a highly praised, 12-week Family Education course,
"Family-to-Family." Providing support, practical information
and opportunity to learn how other families cope after crisis.
It's available from their affiliates, all across the country
(contact: NAMI "Helpline," 11am to 4pm, 212 684-3264. Outside
New York, call NAMI-NYS, 1-800-950-3228).
more
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