July/August 2012 - NAMI Greater Orlando, Inc.

The Beacon
July/August 2012
The Official Newsletter of NAMI Greater Orlando
Inside this issue:
President's Message
1
Education Update
2
NAMIGO &
Community News
3-7
Announcements
8
Support Groups &
Activities
9
2012 NAMIGO
Board of Directors:
Rosemary Steinbach, President
Muriel Jones, Vice President
Jan Ellison-Seay, Secretary
Deborah Parrott, Treasurer
Carla Bresnahan
Lt. Sue Brown
Linda Perez Del Rocco
Donna Helsel
Eddie Imbriani
Paula Kegelman
Wanda Keller
Michael Mangan
Ron Wilensky
Do Unto Others
Dear NAMIGO Family,
Rosemary Steinbach
President
Board of Directors
This weekend, while
making one of my
regular visits to Pathway’s Drop-In
Center to deliver a small load of books,
baseball caps, and toiletries, it occurred to
me how much I have really begun to look
forward to these visits.
As a Drop-In Center for Central Florida’s
homeless who live with mental illnesses,
Pathway’s guests come in search of a
meal to satisfy a hungry belly, the chance
to grab a shower or wash a load of
clothes, play a game of cards on the
computer, or just get out of Central
Florida’s blistering mid-afternoon sun.
This weekend, there was a good game of
BINGO underway, and the Center was
getting ready to welcome a full-house of
visitors as storm clouds threatened a
typical midday gully washer. The sense
of family, community and belonging
made me want to spend my entire
afternoon there!
Linda Winters
NAMIGO Office
Staff: Barb Aikens
Mary Hott
Tracy Lutz
Contact Us:
Mon-Fri 9:00 a.m.-5:00 p.m.
Phone: (407) 253-1900
Fax: (407) 253-1912
E-mail: [email protected],
[email protected]
Website: www.namigo.org
Sadly, one guest came in with a badly
bloodied nose, and had been injured by a
passing car. Making matters worse, in her
attempt to get to the safety of her home,
she was asked to get off a city bus so that
she wouldn’t get blood on other
passengers. She wandered, forlorn, into
Pathways seeking the assistance, kindness
and refuge that had been refused her, and
for the help she knew she would find
there. For me, it was a painful reminder
that our loved ones battling mental
illnesses are far more likely to be victims
of the real-life demons of stigma and
discrimination than a threat to others.
The experience left me moved for another
reason. It reminded me to complain less
when the air conditioner doesn’t cool the
car down fast enough, or when new shoes
leave a blister, or when I get caught in the
rain without my umbrella.
I am
reminded of the struggles that many of
my NAMI friends face in their daily battle
to pursue and maintain recovery, or to
deal with side-effects of medications
which are so necessary to their wellness.
I will likely spend a lifetime aspiring to
achieve the dignity of my new friends
who find contentedness in the company of
others, and for whom expectations are
simply a kind word or a simple deed.
They simply want the Golden Rule
(which I have memorized and can recite,
but do not always practice) to be fairly
administered!
My goal is to treat
whomever I meet as an old friend unconditionally. This will do more than
worldly goods in giving me a genuine
feeling of happiness and purpose.
We’ve worked hard on this issue of The
Beacon. I hope you find something that
affirms your decision to be part of our
NAMI community. If you’re lost or
looking for something to fill a void in
your heart, please call us. We have lots of
ideas for helping you help others.
Best,
2
UPCOMING EDUCATION CLASSES
Starting in
September
Provider Education is a FREE 5-week course that presents a penetrating, subjective view of family and
consumer experiences with serious mental illness to line staff at public agencies who work directly with
people experiencing severe and persistent mental illnesses. The course helps providers realize the hardships
that families and consumers face and appreciate the courage and persistence it takes to live with and recover
from mental illness.
Starting in
August
De Familia a Familia is the Spanish version of the evidence-based NAMI Family-to-Family 12-Week
Education Course. Family-to-Family became an evidence-based practice in 2011, with the publication of
University of Maryland researcher Dr. Lisa Dixon's report on her research.
Starting in
September
Peer-to-Peer is a FREE 10-week education course for persons living with mental illness.
Topics include coping strategies, language, emotion, addiction, spirituality, sleep, relationships, and
advocacy. Learn to complete Relapse Prevention Grid and Psychiatric Advance Directive.
2 Classes
Starting in
August
Family-to-Family is a FREE 12-week education course for families, friends and caregivers of
individuals with mental illness. Course elements include: coping skills; handling periods of crisis and
relapse; up-to-date information on medications; guidance on locating appropriate resources; and caring
for the caregiver.
Register
Now!
Basics is a FREE 6-week education course offered to parents and other caregivers of children and
adolescents with mental health issues.
For more information or to register for upcoming classes, please call the
NAMIGO Office at
(407) 253-1900 or e-mail: [email protected].
3
Affordable Care Act Upheld
You may have heard by now that
the Affordable Care Act (ACA)
was largely upheld by the U.S.
Supreme Court on June 28, 2012.
The Affordable Care Act requires
adults not covered by employeror government-sponsored insurance plans “to maintain
minimal
essential
health
insurance coverage or pay a
penalty, a provision commonly
referred to as the individual
mandate.” The Act is meant to
extend coverage to 30 million
uninsured Americans and will be
implemented until 2020.
From NAMI:
"The Supreme Court's decision
means that the American people
can continue to move forward to
build a health care system that
covers everyone. No system is
perfect, but… The law is a
foundation. Let's keep building
on it."
From Mental Health America:
"The law represents an enormous
step forward in our efforts to
expand access to care for
individuals with mental health or
substance use conditions and in
our advocacy for prevention of
these conditions. Mental health
and substance use conditions are
among the most prevalent of
health conditions, with the age of
onset for these illnesses occurring
in adolescence and young
adulthood.
Half of all people with a mental
health diagnosis first experience
it by age 14, but will not receive
treatment until age 24. These
delays have been importantly
underwritten
by
historical
discrimination
in
insurance
coverage for mental illnesses…
which account for a greater
burden of disease than any other
illness.”
NAMI has issued a report calling for Purple Heart medals to be awarded
for psychological wounds like posttraumatic stress disorder (PTSD) and for
military commanders at all levels to be accountable for suicide prevention
and elimination of stigma.
"NAMI is drawing a line in the sand with the Department of Defense," said
NAMI Executive Director Michael J. Fitzpatrick. "Troops with invisible
wounds are heroes. It's time to honor them. It will also strike a tremendous
blow against the stigma that often discourages individuals from seeking
help when they need it."
The full report is available online at www.nami.org/veteransreport. It
includes full statistics, tables and charts. The report's call to action
includes increasing the VA's service capacity and having the U.S
Department of Health & Human Services fully implement the 2008 mental
health insurance parity law. The report also calls on all Americans to
"reach out, listen and care" to help veterans in need. "Simple things make a
difference" said Fitzpatrick. "Give veterans rides, watch their children or
grant them extra time off from work in order to make it possible for them
to get treatment. Our troops don't leave wounded comrades behind. Don't
leave veterans or their families behind."
From Psych Central:
“People won’t be denied coverage
based upon their pre-existing
condition. This is huge for many
people with mental health
concerns. Changing employers or
insurance providers often meant
having to pretend that a preexisting psychiatric diagnosis
didn’t exist. The new law says
that you can’t discriminate
against a person because of a
pre-existing condition. This
means that more people will get
the care they need and have it
covered by their insurance plan.
It also means an insurance plan
can’t cancel your coverage for a
pre-existing condition, something
that was problematic for many in
the past.”
Go to www.healthcare.gov to
learn more about the ACA
implementation timeline and
available insurance plans.
The Mental Health
Needs of
Military Personnel,
Veterans and
their Families.
4
Relapse Management - with a Side of Ice Cream
We were overjoyed to have over
100 members and mental health
advocates attend our Summer
Education Meeting and join us
for our Post-Walk Ice Cream
Social on June 11th.
Many
thanks go to Joe Large and
Janssen Pharmaceuticals for
hosting our Choices in Recovery
presentation and dinner.
Christal Collins, a dynamic
Certified Peer Specialist from
Alabama, led us through an
informative
program
called
Relapse
Awareness
&
Management Strategies. She
describe ways to empower people
living
with
schizophrenia,
schizoaffective disorder, and
bipolar I disorder. She also
shared how she prepares for and
minimizes the possibility of
relapse.
The Ice Cream Social was a blast!
Our Walk Co-Chairs, Paula
Kegelman and Wanda Keller
hosted an exciting awards
ceremony. Not only was Eddie
Imbriani our Top Individual
Fundraiser, he also won a week’s
vacation at Westin Lagunamar
Ocean Resort in Cancun, Mexico
in the Starwood Vacation
Ownership raffle!
Our Walk was the most
successful in NAMIGO history
bringing together more teams,
walkers, and sponsors together
than ever. We thank you for all
your efforts and awesome hearts!
Congratulations
to the winners of the
2012 NAMIWalk Prizes!
BEST TEAM T-SHIRT
Helsel’s Hope
CRUISE WINNER
Karen Archbold
STARWOOD RAFFLE WINNER
Eddie Imbriani
Many thanks to Rosemary Steinbach and Starwood
Vacation Ownership for the donation of a 7-night
stay at one of their fabulous resort properties!
TOP TEAM FUNDRAISER
Imagine
Team Captains: Ali & Rosemary Steinbach
TOP INDIVIDUAL FUNDRAISER
Eddie Imbriani
Team: 2012 Imbriani Walk Team
5
5
Lake Yale: The Place to Be!
43
By Jude
6 It was my first morning at the Peer
5
Conference at the Lake Yale
Retreat Center in Leesburg.
Walking to breakfast, the day was
beautiful with the lake glistening
from the sun. Other peers were
walking to the same location, but
from different paths. Although
unknown to me, they greeted me
with enthusiasm. Their good cheer
was contagious, so I began
greeting others as well. What a
great way to start the day.
Splendid!
There were so many speakers,
workshops, support groups, and
amazing peers at this conference. I
felt so comfortable in each group I
attended because I knew that each
speaker had been through the same
challenges I have. They understood
a piece of my life. Clint Rayner,
with all that he has gone through
with his illness, is succeeding in
his profession and passion at the
Florida Department of Children &
Families. He gave me the hope I
have been searching for. I want to
succeed in my passion no matter
what I’ve been through. I had tears
of joy running down my face
because I knew there was more to
me than where I was at that time.
When I heard the word “recovery”
from Ted Thomas, our keynote
speaker, I couldn’t wait to hear
what he had to offer me. He said,
“Change can only happen if
you take charge.” The phrase
seemed so simple to embrace yet
so difficult. I am still working on
taking charge. Mr. Thomas said,
“Spirit drives your best self.”
These two phrases are very signi-
ficant to me at this time in my
recovery.
Ted Thomas spoke about
Personal Leadership - a topic I
found fascinating. You are the
only one in charge of yourself.
Be an expert about your own
recovery. Stay stable and then
move forward. He pointed out
that fears, barriers, concerns,
strengths, skills, and skills are
all things I need to know to take
charge so things can change. I
would not have learned this if I
was not at the conference!
Pattern Traps was a term
mentioned in another group. As
the workshop leader was speaking
about his experience about
repeating things over and over, I
could visualize my own pattern
traps that create negative results. I
realized at that moment in time
that I am no longer in charge,
and I had given up my power. To
know this means I can fix it!
Another point this speaker made
was to be around people who
build us up. I liked that.
A certain statement has really
stayed with me: “Go where
you are celebrated, not
where you are tolerated.” I
have been using that statement
with so many everyday issues.
When I use it, other people
appreciate it and agree with it.
When I would walk around
during breaks, I would encounter
more wonderful people. We
would talk about our lives and
groups that we attended. We
talked about how using others to
make you happy destroys you.
That was enlightening. Doing just
this has damaged my self-esteem
and confidence and will continue to
do so if I don’t change that. It is
part of my pattern trap.
I love to laugh and dance! We had
a dance one night and it was a
blast! That is part of stress relief!
I thought I had forgotten how to
dance yet a bit came back to me.
Everyone seemed to have a great
time! Some people can really cut a
rug!!!!
I arrived with a few friends and left
with more. Making sure we have
support groups and friends was
important to know. It may seem
simple,
but
knowing
this
information was crucial for me. I
learned how to be a more effective
friend.
We are strong people.
Take care of you.
The 3rd Annual Peer Conference was
held at Lake Yale in Leesburg, FL. The
conference was a huge success with
over 200 mental health advocates in
attendance. Our own consumers and
peers led workshops in diversity,
FaithNet, and vision boarding as well
as facilitated multiple support groups.
6
5
The U.S. House of Representatives declared July to be
National Minority Mental Health
Awareness Month in 2008. This
effort to improve access to
treatment
through
increased
awareness came into being in
honor of Bebe Moore Campbell.
Ms. Campbell, author of “72Hour Hold,” was also the cofounder of NAMI Urban Los
Angeles. She passed away in
November, 2006.
Multiple reports from the Surgeon
General’s office indicate the
following:
 Individuals from racial
and
ethnic
minority
groups tend to underutilize mental health
services due to less ac-




cess to and availability of
appropriate care
Stigma,
shame,
and
cultural belief systems
deter these individuals
from seeking treatment
Poor mental health and
psychological distress are
linked to poverty
Treatment
is
sought
primarily at the point of
crisis and takes place in
emergency
rooms,
detention centers, and
jails
There is a higher
incidence of dual diagnosis amongst minorities
In the last ten years, there has
been a concerted effort in the
mental health and substance use
professions to practice “cultural
competency”
in
effectively
eliminating disparities in minority
health care.
What is cultural competency?
According to the Office of
Minority Health, it means “health
care services that are respectful of
and responsive to the health
beliefs, practices and cultural and
linguistic needs of diverse
patients can help bring about
positive health outcomes.”
To read more about NAMI’s
efforts to bring awareness about
minority mental health, visit the
NAMI
Multicultural
Action
Center
webpage
or
www.nami.org.
The “Silver Tsunami” & Mental Health Care
The Institute of Medicine recently
issued a report entitled The
Mental Health and Substance Use
Workforce for Older Adults: In
Whose Hands?
At issue is the “silver tsunami” of
health care needs for a senior
population expected to reach 72
million by 2030. Approximately
20 percent of seniors live with
psychiatric
symptoms
and
behaviors.
Both the elderly and those with
mental health and/or substance
use issues require special care.
The combination of the two is
particularly challenging.
Some elderly people may be less
able to be compliant with
financial hardship, and you have
the perfect storm.
complex medication regimens for
both mental and physical issues.
Also, psychotropic medications
may not interact well with
medications needed to treat
diabetes, high blood pressure,
heart disease, or chronic pain.
Throw in problems with isolation,
poor access to healthcare, and
"We really need to be training the
existing
workforce,
which
interacts with both older people
and mentally ill people, to have
the skill set of the other group,"
said Dr. Rabins, an author of the
report.
“People with general
mental health training, such as
social workers, psychologists and
psychiatrists, have very little
training in treating the elderly.
Those in the aging network have
very little experience treating
mental illness."
This article is excerpted from “Aging
Boomers’ Mental Health Woes Will
Swamp Health System” in U.S. News
& World Report.
7
The Role of Medication in Recovery
For many of us who live with
mental illness, medication is a
necessary foundation of recovery.
We have struggled to find the
effective
"cocktail"
or
combination of meds. We have
waded through the titration
periods,
waiting
for
our
medications to kick in at
therapeutic levels. Medication
changes, meds that stop working,
side effects - these are all part of
the conversation for the person
dealing with mental illness.
As Sheila Carroll writes, "What I
do to keep my mind well is… I
take my medicine, I take my
medicine. I take my medicine. It
is my bottom line, my 'shield of
armor' to fight against mental
illness." There is an overwhelming feeling of relief when the
right combination works. Finding
this combination comes from
being honest with your doctor,
learning about medication, talking
about options, and monitoring
how you're feeling.
But what about access to
medications? Many of us cannot
afford the rising cost of health
care. Luckily, there are several
ways to help pay for your
prescriptions.
PARTNERSHIP FOR PRESCRIPTION
ASSISTANCE
The Partnership for Prescription
Assistance
helps
qualifying
patients without prescription drug
coverage find programs that
provide
free
or
low-cost
medications. PPA accesses over
475 public and private programs.
Visit www.pparx.com or call 1800-444-4106 to learn more.
PRESCRIPTION DRUG
ANCE PROGRAMS
ASSIST-
This site provides a service that
finds
corresponding
Patient
Assistance
Programs
that
correspond to the particular
medication. Call 1-800-762-4636
or visit www.phrma.org.
prescriptions for low-income
consumers as well as those who
fall into the Medicare Prescription
Drug Coverage gap.
Visit
www.floridadiscountdrugcard.
com or call 1-866-341-8894.
CHAIN PHARMACIES
Many stores like Walgreens,
Publix, Sam’s Club, and Walmart
also have their own low-cost
prescription programs.
TOGETHER RX ACCESS
Together Rx Access can help
qualifying
patients
without
prescription drug coverage save
on hundreds of name-brand and
generic products and connect
them to resources about coverage
options. Call 1-800-444-4106 or
visit www.togetherrx.com.
RX ASSIST
RX Assist offers a patient
assistance program directory and
information about drug discount
cards, programs that help with
medication co-pays.
Visit
www.rxassist.org
PHARMACEUTICAL COMPANIES
Many pharmaceutical companies
offer free or low-cost medications
to eligible consumers. Janssen
Pharmaceuticals, Bristol-Myers
Squibb Company, AstraZeneca,
and Eli Lilly are just a few of the
companies that have these
programs. Visit www.nami.org
for detailed information.
FLORIDA DISCOUNT DRUG CARD
PROGRAM
The Florida Discount Drug Card
is designed to alleviate the cost of
NeedyMeds is a non-profit
information resource devoted to
helping people in need find
assistance programs to help
them afford their medications and
costs related to health care. To
learn how to best utilize their
resources, go to their website to
sign up for one of their bi-monthly
webinars:
Date: Wednesday, July 18, 2012
Time: 1:00 PM - 2:00 PM EDT
or
Date: Tuesday, July 31, 2012
Time: 3:00 PM - 4:00 PM EDT
8
RESEARCH PARTICIPANTS NEEDED
FOR STUDY ON BIPOLAR &
SCHIZOPHRENIA-SPECTRUM DISORDERS
No Medications Involved
Orange County Mayor Teresa Jacobs
cordially invites you to a breakfast reception
If you are 18 – 55 years old and live with
schizophrenia, schizoaffective disorder, or bipolar
disorder, you may qualify to participate in a
completely confidential UCF Psychology
Department study.
Wraparound Orange "Transforming our
Community Investment in
Children's Mental Health"
It involves a psychological interview and some tests
of thinking ability during EEG (brain activity)
recording.
Florida Hospital - Werner Auditorium (Ginsburg Tower)
2328 Alden Road, Orlando, FL 32803 (parking)
Compensation is $15/hr. for an
estimated 3 hr. meeting.
nd
Possible 2 meeting w/compensation.
Monday, July 23, 2012
8 - 8:30 a.m. Registration and Networking
8:30 - 9:30 a.m. Meeting
Continental Breakfast will be provided.
Call 407-823-4386 to leave a phone message with
your name, phone number, and best time to call you.
SOAR Training
LGBT Youth &
Mental Illness:
Double Stigma
Dr. Daniel Garza will join NAMI's Dr. Ken Duckworth
to discuss Lesbian, Gay, Bisexual and Transgender
Youth and Mental Health on July 20th. Dr. Garza is
the consulting psychiatrist for Health Outreach to
Teens, the largest LGBT youth primary health clinic
in New York.
Date: Friday, July 20, 2012
Time: 11:00 a.m. - 12:30 p.m.
Call: 1-888-858-6021
Access Code: 309918#
Note: NAMI's children's conference calls with Dr.
Ken Duckworth, NAMI's medical director and a child
and adolescent psychiatrist take place on the third
Friday of every month. The calls are scheduled from
11:00 a.m. - 12:30 p.m. E.T.
SSI/SSDI Outreach, Access, &
Recovery
This program is designed to provide an in-depth,
step-by-step explanation of the Social Security
application and disability process. To learn more
about SOAR, please visit www.prainc.com/SOAR.
Date: August 2nd & 3rd, 2012
Time: 9 a.m. – 4:00 p.m.
Location: Lakeside Behavioral Health Care
Princeton Conference Room
1800 Mercy Drive
Orlando, FL 32808
Fee: $25
Contact Denise Johnson at (407) 873-3700 x6731
to register.
For more details on NAMIGO's events and meetings, visit our website
@ www.namigo.org or call (407) 253-1900!
9
Activities
NAMIGO Support
Groups
Consumer Support Groups
& Family Support Groups
When: Tuesdays @ 6:30 p.m.
Where: Asbury United Methodist
Church, 220 West Horatio Avenue,
Maitland
Room 14 (Consumer)
Room 15 (Family)
When: 2nd and 4th Tuesdays of the
month @ 6:30 p.m.
Where: St. Luke’s United Methodist
Church, 4851 S. Apopka-Vineland
Rd., Bldg. B, Orlando
Rm. 201 (Consumer)
Room 202 (Family)
When: Wednesdays @ 5:30 p.m.
Where: Sedona House,
3950 N. Hwy. 17-92, Suite 1026,
Lake Mary (Consumer)
(407) 321-7015
NAMI Conexión
(in Spanish / en Español)
When: Tuesdays @ 6:30 p.m.
Where: Engelwood Community Ctr.,
6123 La Costa Drive, Orlando
Bowling is held every Thursday at Aloma
Lanes in Winter Park @ 2:00 p.m. Call
Rick Scott at (407) 929-1527 for further
details.
Craft Group enjoys making arts and craft
projects together, such as quilting,
scrapbooking and designing jewelry. It
meets the 3rd Wednesday of each month @
11:00 a.m. Call Christina Mollick at
(407) 937-8049 for further details.
Consumer Council is a consumer
advisory board that meets the 4th Monday
of each month @ 6:00 p.m. For more
details, please contact Linda Perez Del
Rocco @ [email protected].
Lunch Bunch is a social group for
consumers and family members that meets
the 2nd Tuesday of the month at Smokey
Bones in Casselberry @ 11:30 a.m. Call
the NAMIGO Office at (407) 253-1900 for
further details.
Second Harvest is a community service
group that meets the 1st Friday of each
month. Consumer participants enjoy a
lunch and are paid for their time. Call Pat
Purcell at (407) 875-3758 if you are
interested in helping others.
Consumer Lunch & Movies takes place
the 1st Tuesday of each month. The group
meets @ 11:00 a.m. in front of Subway at
the Altamonte Mall food court for lunch
before enjoying the movies.
E-mail
Jonathan Lee @ [email protected] for
information on the next outing.
Other Support Groups
Central Florida Bipolar
Support – a local independent
support group. (407) 808-6343
People, Inc.
~ The Mental Health Association’s
support group for anyone living with a
mental illness.
When: Mondays @ 2:00 p.m.
(English);
Wednesdays @ 2:00 p.m. (en
Español) – call to confirm day of.
Where: 1525 Robinson St., Orlando
Contact: MHA Office at (407) 8980110.
Healing After a Loved One’s
Suicide (HALOS)
~ Peer-led open support group.
When: 2nd & 4th Thursdays of each
month. Call David Zampella for
times and locations at (407)9478683.
Suicide Anonymous Online
~ A 12-step program provided in an
online environment designed to help
people with suicidal preoccupation
and behavior.
Subscribe at: [email protected].
See the answer at the bottom of page 6!
10
NAMI Greater Orlando
1800 Mercy Drive
Suite 300, Mailbox 4
Orlando, FL 32808
(407) 253-1900
www.namigo.org
Central Florida’s Voice on
Mental Illness
Have a Great Summer!
NAMIGO Membership Form
All donations, contributions, and membership monies are used to continue the support of our programs and
services for those living with mental illness and their families in Central Florida. NAMI is a 501(c)(3) nonprofit
organization.
 Individual Membership in NAMI
$35.00
 Professional Supporter w/NAMI Membership
$100.00
 Check here to be recognized in the Beacon Newsletter
FINANCIAL HARDSHIP LEVELS
 Open Door One – Full Membership
$3.00
 Open Door Two – Unable to pay dues
FREE
at this time (placed on mailing list)
 New Membership
 Donation to NAMI
 Renewal
$ ______________
Name _______________________________________
Phone ________________________________
Address _____________________________________
E-mail ________________________________
___________________________________________________