MAY 2018 
From the desk of Jackie Lane, Executive Director  NAMI CC&I 


Feelings of shock and extreme dismay permeated the NAMI CC&I offices in mid-May when we learned of the suicide of Catherine Mary Barron, the daughter of Barbara Barron, one of our NAMI Family-2-Family teachers and an active and dedicated volunteer. Catherine, an intelligent and beautiful young woman, hanged herself using the cord of her bathrobe, in the closet of the Hyannis group home to which she had been assigned upon her discharge from the DMH Pocasset facility.
 
Catherine had a long history of mental health issues including severe depression, had been hospitalized multiple times, and had made other suicide attempts. Her mother worked diligently for years to try to find the right treatments and living conditions for her daughter. The NAMI CC&I staff, for the past two years, had been actively involved in advocating for Catherine at every level of treatment. Through the resourcefulness of her mother, Catherine was at the top of the waiting list to be admitted to Worcester, the best of the continuing care mental health facilities in Massachusetts. Against her mother's advice and our advice, she was diverted to the group home to try a "less restrictive" environment. Obviously, this was a very deadly decision.
 
Moving beyond the anger, yes anger, and the extreme frustration we feel about this tragedy, we will be asking hard questions and seeking answers about this particular case. In addition, we will also be adamant in our advocacy for increased accessible, quality continuing care facilities for the many in our society who need this level of care to survive. In the closing of the mental institutions, in order to integrate the mentally ill into society, we have left many to suffer and often die, as we have not furnished the support systems to sustain their lives.
 
Why are there so very few quality continuing care beds available in this state? Why does one have to use "connections" to get into one? Why are there so few group homes? Are they properly supervised? Are the staff members appropriately trained to supervise and care for some of the most unstable members of our community? Why are there no beds on the Cape for children and adolescents who need a longer-term facility?
 
It is past time to address the fragmented state of our mental health care system and to continue to address the stigma attached to mental health issues - a stigma that often prevents people from seeking help. Mental health is health and mental illness is an illness like any other illness and needs to be treated with equal resources and respect.
 
Barbara Barron has requested that memorial gifts in Catherine's name be sent to NAM CC&I for the establishment of the Catherine Mary Barron Advocacy Fund. Catherine Mary Barron cannot have died in vain!


At the funeral, Barbara shared a poem that Catherine wrote
ADVOCACY NEWS...

From the desk of Mary Zdanowicz, Esq.

DMH Community Mental Health Services Will Change on July 1, 2018 
And There Are Some Things You Should Know
 
Massachusetts is in the midst of reforming services delivered through MassHealth and the Department of Mental Health (DMH). The overall goal is to improve coordination of health care services and to integrate behavioral health with the greater health care system.
 
MassHealth implemented changes on January 1, 2018 and March 1, 2018. DMH services will change July 1, 2018. During this period of transition, advocacy will be important to ensure that individuals do not "fall through the cracks" and that elements of the programs that are key to success are implemented properly.
 
Program elements that are key to success
The new model for DMH community services will be called Adult Community Clinical Services (ACCS). There are several promising elements of this new program. For example, we've been told that DMH is issuing new HIPAA guidelines and providers must ensure that " family involvement is routinely encouraged, in recognition that families can be key allies in the treatment process and their involvement often can help facilitate better treatment outcomes."
 
This is a significant improvement for families who are accustomed to hearing "I can't talk with you because of HIPAA ." But it will also be a significant change for providers who have been trained to give that response. With input from our members, we will be able to identify cases in which this change is not implemented and advocate for better training. Furthermore, our members will play a vital role in spreading the word that HIPAA does not necessarily mean "no."
 
Potential for falling through the cracks
MassHealth members and DMH clients will be assigned a care coordinator responsible for managing their medical and behavioral health care services. Care coordination will be provided by various entities, such as the new Behavioral Health Community Partner (BHCP) organizations, DMH case managers, Adult Community Clinical Service providers, etc. But, it is not yet clear how care coordinators will be assigned for some DMH clients.
 
For now, let's just say that it is complicated. It will be important for NAMI CC&I members to inform us of potential problems during the transition. We can use that information to find solutions and help people advocate for themselves.



   More from Mary Zdanowicz

Reforming The Community Mental Health System Is Not Enough

One of the reasons the Department of Mental Health is redesigning its community mental health services from the Community Based Flexible Supports (CBFS) program to the clinically-oriented Adult Community Clinical Services (ACCS) program is that the " current model is unable to meet the increasing demand for services" resulting from the lack of access to state continuing care hospitals, such as the Worcester Recovery Center and hospital.
 
"Since 2009, the DMH inpatient system has seen a 40% increase in court referrals, 14% increase in Bridgewater step-downs, thus resulting in a 52% decrease in admissions from acute care hospitals that contributes to the log-jam."
https://www.mass.gov/files/documents/2018/01/24/bh-system-restructuring-document_1.pdf

I wrote about this issue in an opinion published by the Cape Cod Times more than two years ago:
"But hospital closures are not the only problem. An increasing number of admissions to state psychiatric hospitals are "forensic patients," those in the criminal justice system who are typically admitted from jails and prisons. In 2013, less than half of intermediate and long-term psychiatric hospital admissions were "civil" patients. That means that more chronically mentally ill people in the community have nowhere to go. Their most likely destinations are the emergency room at Cape Cod Hospital, the streets and homeless camps in Hyannis, incarceration in the Barnstable County Correctional Facility or death from an overdose. Many live alone in the shadows without anyone to even try to help them."
"That doesn't mean that forensic patients should be shut out of hospitals. Without treatment they are destined to an endless cycle of incarceration. What it does mean is that more continuing care psychiatric hospital capacity is needed."

Invest in reopening psychiatric hospitals
Cape Cod Times
October 16, 2015
http://www.capecodtimes.com/article/20151016/OPINION/151019714

                                                                        
Suzanne Fronzuto
NAMI on Nantucket Program Coordinator


          On the last day of May, we bade "fair winds and following seas" to Ruth Blount and her husband, Bill, as they leave the island of Nantucket for a new chapter in their life's journey. As many of you know, Ruth was the first NAMI on Nantucket program coordinator. Ruth taught Basics and Family-to-Family classes, organized and facilitated parent and peer support groups and was the driving force behind the development of the David Glidden Travel Fund which came about after the tragic loss of a beloved island resident. This fund provides financial support to people needing to travel off-island for mental health-related services. When Ruth turned over program coordinator duties to me, it was to do more of what she did best-reach out to individuals and families struggling with a new or long-term diagnosis, in need of respite, where to go for insurance concerns, or maybe just a shoulder to lean on and a cup of tea. Ruth never said no.

          I have learned much from Ruth, certainly my NAMI duties and responsibilities, but more importantly, how to be a better person and a better friend. The ferry hasn't quite rounded Brant Point and I already miss her terribly. Ruth has promised to return for our Dragonfly fundraiser event in August and is only a text or phone call away. I'm going to hold her to it. So it's au revoir, Ruth, but not good-bye. Best of everything to you and Bill, and keep your phone charged-I'll be calling!

 And From NAMI on Martha's Vineyard 



May was a busy month for NAMI on Martha's Vineyard. We are winding down our F2F class which was a huge success!  The class was very engaged and interested in future involvement. Special thanks to Megan Grennan and Katherine Neadow for their leadership and commitment. 
 
In partnership with the Vineyard Haven Public library, we launched the first of a film series focused on Mental Illness. "Call me Crazy" was well received by the audience and active discussion followed. 
 
We also welcomed Jud Phelps, NAMI CC&I's Director of Client Services,  to Martha's Vineyard, where he spoke with Support Group Facilitators and discussed some of the issues he has faced as a long-time Support Group Facilitator. As a result, we'll be adding a second monthly support group very soon. 
 
Lastly, we started a monthly NAMI business meeting for all those interested in sharing ideas to help NAMI's presence and programming on island become more visible. Our next scheduled meeting is Tuesday, June 14 at noon at the IWYC conference room, bring your lunch!

Cecilia Brennan
NAMI CC&I   
MV Representative

   


          
 
 
 
 
Mental Health Awareness Month, Remission is Possible in Serious Mental Illness
 
May was coined Mental Health Awareness Month in 1949 by Mental Health America, a national organization dedicated to addressing the needs of individuals with any mental illness and improving the mental health of all Americans.

Picked up by other organizations such as the National Alliance on Mental Illness and the National Council for Behavioral Health, Mental Health Month has become a clearinghouse for promoting anything mental health-related, including mass media campaigns to fight against the stigma of mental illness, and exercise and fitness programs that support a healthy lifestyle.

This year, the Office of Research and Public Affairs at the Treatment Advocacy Center is going to use Mental Health Month to bring awareness to research into the impacts of the most severe of psychiatric diseases, which are often ignored by these national media campaigns.

Remission and recovery for people with serious mental illness

Recovery and remission is possible for individuals with serious mental illness, despite the common misconception that they are progressive, chronically debilitating diseases. Like any chronic illness, schizophrenia and severe bipolar disorder are episodic diseases with waxing and waning symptomology. Individuals with schizophrenia, for example, may experience periods of severe positive and negative symptoms in combination with periods of symptom remission when adhering to proper treatment.

New research published this month in Psychiatric Services from Temple University's Mark Salzer, PhD, and others, suggests that up to one-third of individuals with serious mental illness are in a period of remission at any given time. The authors argue that estimates of remission from serious mental illness are important to use as benchmarks when evaluating health policies.

Salzer and his co-authors utilized the Truven Health Analytics household survey, a community sample of more than 40,000 individuals. Although this type of survey has significant limitations due to the inability to capture individuals who lack housing or those who are institutionalized in hospitals or jails, the results are illuminating in regards to prevalence and remission of serious mental illness in the United States.

Survey Results

Based on responses to questions about previous diagnosis, history of hospitalization and level of functioning, the authors report that 3.9% of the sample had a serious mental illness. An additional 1.9% of individuals claimed to have a serious mental illness but reported that the illness had not severely interfered or limited their daily lives within the past 12-months, indicating a period of remission.

Remission rates in this study were directly related to age of the individual. Remission was less common for respondents 32 years-old or younger. After that age, the probability of remission increased steadily as individuals aged. Some 58% of survey respondents were found to be in remission at age 65.

The authors argue that the findings from this study should be treated with caution, as the sample is limited and remission was a self-reported indicator. However, Salzer writes "this is an inspiring number that should provide hope to many about their future after a diagnosis as well as to caregivers and other loved ones... It can also serve as a benchmark for future efforts aimed at evaluating the effectiveness of mental health policies and service delivery systems at all levels. Nonetheless, there is ample room to improve recovery-remission rates, and more research is needed to explore how to enhance recovery."

It is important to note that the use of the word remission is not meant to imply that symptoms will not return. Remission rates vary depending on specific diagnosis. However, the results confirm the episodic-nature of serious mental illness and the need for a full spectrum of services. Just like any other chronic illness, individuals with serious mental illness deserve a continuum of care that addresses their needs at all points along the course of the illness. Mental Health Awareness Month is as good a time as any to bring attention to this need.
 
 
Elizabeth Sinclair
Director of Research
Treatment Advocacy Center
 
References:
 
Questions? Contact us at [email protected]  
 
Follow ORPA on Twitter at @TreatmentAdvCtr #TACResearch. 
 
Research Weekly is a summary published as a public service of the Treatment Advocacy Center and does not necessarily reflect the findings or positions of the organization or its staff. Full access to research summarized may require a fee or paid subscription to the publications.  
 
 
 
 
 
:
 
 
 

 

 

  








 

Family-to-Family
Martha's Vineyard

Thank you Megan Grennan and Katharine Neadow for facilitating Family to Family on Martha's Vineyard.  Thirteen participants completed the course at Grace Episcopal Church in Vineyard Haven on May 21st.
 

Mental Health First Aid

Thanks to a generous grant from Cape Cod Healthcare Community Benefits, NAMI CC&I will be offering Mental Health First Aid, a national program which teaches skills to respond to the signs of mental illness and substance abuse.  This program will teach 30 caregivers of adults, especially targeting the elderly and shut-in, to teach mental health first aid to others in their agencies thus continuing our focus on proactive programming.  We will be recruiting caregivers from agencies across Cape Cod for these valuable 3-day programs in June and July.
 If you would like more information, call the NAMI CC&I office.


  A poem from one of our readers... 
   
I want to share with you a poem dedicated to my mental health. I have a history of bi-polar, depression, anxiety, and psychosis. It's been a difficult journey and I want to share this with the hopes that someone might not feel alone. This is a real struggle, mental health, that many carry. May this bring more awareness to the battle within.

Sleepless nights, as the pill awaits, it's a fight I can not win.
Yesterday euphoria was in flight as I was bathed in light, but oh the day that we call tomorrow!
Nails on the chalkboard take room in my head as my body billows over in painful dread. Hell on earth exists, this is real, the fire of now.
Angels of light reach in for me to take me back into the paradise of my next moment. AHA!!! I see again!! Back into what I call heaven, I'm higher than ever. Now I should be able to sleep.
I lay my head down to rest, with the angels by my side, I close my eyes.
Shadows creep in under my door whispering to me the darkness that I am. Guilt and dread are my friends again with the thief that takes my sleep.
It's been five days without food or rest, and the games in my head are ever turning with relentless twists and turns.
The hospital awaits my coming now with pills by my bed.
"Give her order! Tame her down! She's out of control!"
At least I was able to sleep and walk the hallways without covering my ears.
And so it began, my life with meds . The new me. Now, the ups are not as high, and the lows are not as low. I'm "even keel", you could say. I'm functional with a sense of calm.
As great as that is, especially for others, I'm left in a dull ache of what I can not feel. I feel like a wild animal in a zoo, tamed and broken.
But how can I complain?
Isn't this better than my hell bound anguish of my lows, of the hospital bed where the nurse would tell me I'm crazy?
YES!!!
It is better than that, and to my meds I'm grateful.
Oh, but my soul. My wild, free, ever-changing, and evolving soul. It cries when I sleep. It cries and flies away into the dream world of what it knows can be. It feels and searches and finds its home.
You see, there's more. There's always more.
But fear takes my hand, reminding me of my relentless breakdowns, and reaches out to the pills of safe routine.
"At least you're safe here Genevieve. And for now, you need to be safe. There's too much at stake. What you crave will only break you."
This is my conditioning.
So I count my blessings and continue this battle with my caged bird. I will love and trust and be all I can be for now, because for now, this is me. "

Thank you
❤️

Genny Bothwell



The Key Idea

The Key to Understanding * Stories of Struggle and Healing will expose the deep fears and sincere hopes of individuals who suffer from mental health issues, their caretakers and first responders. This moving exhibit will give a voice to folks who suffer from an illness that is hard to explain to others. Your disorder does not define you. The key is to deal with my bipolar disorder.
People participating in NAMI Cape Cod & The Islands (National Alliance on Mental Illness) programs gathered together in NAMI Peer and Support Groups or Family to Family classes and were invited to add their experience to a collective art project though The Key Idea™.   Individuals were given an opportunity to reflect on their experiences with mental health and create a meaningful piece of art inspired by a key. They each were asked to select a used key, draw it and answer the simple question, 
What does your key open or start or do?         This key unlocks the chains that shackle my happiness.

The Key Idea, Inc . will fund this project through a grant from the hope & grace fund, a project of the New Venture Fund in partnership with the global women's skincare brand Philosophy, inc. 

Project developer Lenore Lyons and project partner Tamara Harper expect to gather and display several hundred KeyStories. The goal is to give people an opportunity to share their unique experiences through art and writing as well as to raise awareness and reduce the stigma of mental illness through this large-scale community engagement project.
The KeyStories were collected over a six -month period; the exhibit will travel to three regional libraries.  

See The Key to Understanding at the Snow Library in June and the 
Mashpee Public Library in July 2018.




Book Review
                                     
 Invisible Grandparenting:
Leave a Legacy of Love
Whether You Can Be There or Not

By Pat Hanson, Ph.D.


We often speak about grandparents raising the children of their mentally ill or unstable child.  Less often acknowledged is the other side--when your mentally ill child suddenly  refuses to allow their parents to have any contact with their grandchildren who are under the age of 18.  

If there is no issue of neglect or abuse, there is very little grandparents can do to establish contact that does not put the grandchildren in conflict with their parents who may or may not have given them an explanation for the lack of contact.  This can be a heartbreaking situation for caring grandparents who love and want to protect their grandchildren.

In this book, Invisible Grandparenting, Dr. Hanson suggests a more positive channel for the grief, anger and helplessness that grandparents feel in this situation--virtual grandparenting.  She describes how to use letter writing to move on from the pain and to pass on the love as well as the stories they would otherwise impart.  The hope is that these letters can be passed on to the grandchildren when they come of age.

Dr. Hanson shares her pain as well as her letters in an effort to help other grandparents heal from this wrenching hand they have been dealt.





Dance In The Rain 

Dance in the Rain Whole Person Approach is a non-profit organization that supports peers who struggle with mental illness. Located in the heart of Hyannis, we provide this population with an opportunity to expand their lives, despite their condition, to grow, engage and heal. The staff, from executive director to volunteers, live with a history of mental illness as well. Our staff is well vetted to work with other peers who wish grow and seek to define themselves beyond mental illness. We are the only program in New England to have an organization that is conceived, developed and designed by peers for peers. Daily programs are offered to enhance self-esteem and positive identity.

For more information, contact:
Mary E. Munsell
Founder/Executive Director/Peer
Dance in the Rain Whole Person Approach
Peer to Peer Mental Health Center
501 c 3 Non Profit Public Charity
508-364-4045

   Transportation Services....

  The Cape Cod Regional Transit Authority provides a daily general public demand service called Dial-A-Ride Transportation (DART) that is a door-to-door ride by appointment transportation service.  It is available to all 15 Cape towns, runs from 7:00 am to 7:00 pm on weekdays and more limited hours on weekends.  It is easy to access and use.  

For more information, call them at 800-352-7155 or visit their website at:

http://www.capecodtransit.org/b-bus.htm



The Primer on Mental Health
WE'RE PUBLISHED!! You Are Not Alone: A Primer on Mental Illness, which has been in development for the past 18 months, is now available. (Call or email the office to make arrangements for your personal copy or copies for your organization.)  The Primer has been hugely popular--we published 2,000 copies
and have only 200 left!

The Primer is also online on our NAMI CC&I web site. The production and publication of this 88-page booklet was made possible by generous support from the Cape Cod Healthcare Community Benefits Fund, The Kelley Foundation, Inc. and The Cape Cod Five Foundation.


Tidbits...
 
If you shop at the Orleans Stop & Shop or the downtown Nantucket Stop & Shop, take a closer look at your shopping cart.  NAMI CC&I will have its signature sunset ad posted on the cart.  We hope this will bring more
awareness of NAMI to that area.


Mark Your Calendars: 

Family-to-Family  FALMOUTH
NAMI Cape & Islands would like to offer Family to Family in Falmouth to begin this summer.  Family to Family is a 12-week course for family members, partners, and friends of individuals with mental illness. The course is designed to facilitate a better understanding of mental illness, increase coping skills and empower participants to become advocates for their family members. 
 
If you or someone you know would benefit from this type of education, please contact Kim Lemmon, Director of Family Programs at 508-778-4277  or email Kim at  [email protected]
 

Worth a Trip to Cambridge:

How Neuroimaging Can Serve Patients and Families Dealing with Psychiatric Illness
Tuesday, June 5, 2018, 6:30-8:30 PM
Presentation will start at 6:45
Macht Auditorium, Cambridge Hospital
1493 Cambridge St., Cambridge                 Parking vouchers available)
 
NAMI Cambridge-Middlesex presents Speaking of Science 2018
 
Based on exciting new advances in brain research at MIT, Dr. Gabrieli will discuss ways in which human brain imaging may have translational potential in terms of offering:
 
Early identification of individuals at risk for mental health difficulties;
  • "Neuroprediction", aimed at personalized or precision medicine targeted for selection of an optimal treatment program;
  • Cutting-edge, noninvasive, behavioral interventions such as mindfulness based real-time fMRI neurofeedback, used to augment current available treatments and limit theprogression of psychiatric disorders.
 
See Dr. Gabrieli's neuroimaging work on adolescent depression and anxiety (BANDA) at https://bit.ly/2Jm1QX0





 
     
NAMI National Convention

For more information, go to the nami.org website




GRANDPARENTS RAISING GRANDCHILDREN - SEVERAL EVENTS
                              

Massachusetts Commission on Grandparents Raising Grandchildren
7th Annual Conference:  June 6  8:30am-3:00pm Marlborough, MA
Visit www.massgrg.com for more information


Grandparents Raising Grandchildren:  Legal Advice
Grandparents with questions about guardianship/options can visit the Probate Court on the 3rd Thursday of the month between 8:30 AM-1:00 PM.
They can also call the Bar Association (508-362-2121) or Susan at the courthouse (508-375-6730) for an appointment with Kathleen Snow on  Mondays between 10:00 AM-1:00 PM.
There is no fee for either of these consultations.

 
Lawyer For A Day--Free Legal Advice
Held daily at the Barnstable Probate Court.  It is advisable to arrive promptly when it opens at 9:00 am as it is first come, first served and fills up quickly.
 
 
I nclusions in the Newsletter
We have recently been asked for last minute inclusions of events in our newsletter.  We have instituted a new policy:  It is at the discretion of the Executive Director to determine whether content being submitted for distribution to the membership is aligned with our mission.  If the content is determined to be appropriate, it may be included in the monthly e-newsletter if it is submitted prior to the first of the month.

 
 

 
When  shopping on Amazon, think NAMI CC&I and Amazon Smile.
 Every dollar you give to NAMI CC&I goes to help support, educate and advocate for the residents of Cape Cod, Nantucket and Martha's Vineyard.  



AmazonSmile is a simple way to give when you are shopping on Amazon

Amazon donates 0.5% of your eligible purchases. 
It's so easy, you can still use your Amazon Prime and you still collect points.  All you need to do is:  When you are going to make a purchase on Amazon, first enter
in your internet browser. On your first visit to AmazonSmile, you will be prompted to select a charitable organization .  
Select NAMI Cape Cod Inc.
Thank You!
 
5 Mark Lane, Hyannis, MA 02601   508-778-4277    www.namicapecod.org
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