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


A couple of weeks ago, we had the good fortune to spend two productive hours with Cheri Andes, the newly appointed Executive Director of NAMI Mass. Cheri is visiting the various affiliates in an attempt to not only get to know us, but to learn of our challenges and priorities.
 
We, at NAMI CC&I, came away from the meeting feeling that there are many ways in which we can increase our collaborative efforts with NAMI Mass, especially in the area of advocacy. We also felt that our special needs as the Cape Cod and Island affiliate, often dictated by our unique demographics, would be respected and supported. The staff of NAMI CC&I has a commitment to respond to the needs of our Cape and Island communities, and we feel strongly that that commitment has contributed to the exceptional levels of support we are receiving. This support has allowed us to offer community programing such as CCIT for police and Think:Kids for teachers in addition to our NAMI family programing. And, of course, all our programing remains free of charge and available to all.
 
We are excited that we will be offering NAMI Homefront, a six-week course for families and friends of veterans, as a pilot program for the state. We had expressed interest in trying that program as we have a large number of vets on the Cape. The six-week program, much like Family to Family, concentrates on the special issues that vets face including, of course, PTSD. We hope to have teachers trained to conduct these classes within a few months.
 
Cheri Andes is making advocacy a strong part of her vision for NAMI Mass, and we intend to participate fully. An Advocacy Committee, consisting of a representative from each affiliate, is planned, ensuring that the needs of all areas are considered, not just the "view from the top" in Boston. Mary Zdanowicz will be a strong advocate representing us.
 
In conclusion, I feel that there is an opportunity for us to grow with NAMI Mass while also continuing to respond to, and hopefully meet the needs of Cape and Island community. This is all good!

 
ADVOCACY NEWS...

From the desk of Mary Zdanowicz, Esq.
 
NEW GIUDANCE SHEDS LIGHT ON WHAT THE HIPAA LAW ALLOWS
 
     " HIPAA Helps Family and Friends Stay Connected With Loved Ones Who Have a Mental Or Behavioral Health Condition " - Based on the experience of scores of families on Cape Cod & the Islands, this seems an unlikely title for a HIPAA (Health Insurance Portability and Accountability Act) guidance document, but it is just that!
 
     President Obama signed legislation in December 2016, which required the Secretary of Health and Human Services (HHS) to prepare, within one year, "easily comprehensible resources relating to appropriate uses and disclosures of patient information" under HIPAA, particularly as it relates to mental health and substance abuse. (HHS is the agency designated by Congress to enact and enforce HIPAA regulations and guidance.)   In accordance with the law, the HHS Office for Civil Rights published a number of guidance documents in December 2017, which can be found on the main page at https://www.hhs.gov/hipaa/for-professionals/special-topics/mental-health/index.html .  

      An overview of the most important information in a question and answer format is provided in the guidance entitled "HIPAA and Sharing Information Related to Mental Health." This document can be found at https://www.hhs.gov/sites/default/files/hipaa-privacy-rule-and-sharing-info-related-to-mental-health.pdf
 
     There are additional guidance documents related to specific topics. The links to these documents are found on the main page (see above). ·       

  - "HIPAA Helps Mental Health Professionals to Prevent Harm" ·       
  - "HIPAA Helps Family and Friends Stay Connected with Loved Ones Who Have a   Substance Use Disorder, including Opioid Abuse, or a Mental or Behavioral Health Condition." ·        
- "When can I obtain treatment information about my loved one?" (This is a decision flowchart.) ·       
  - "If You Experience a Health or Mental Health Crisis, HIPAA Helps Your Doctors, Nurses, and Social Workers to Reconnect You with Family, Friends, and Caregivers." ·       
  - "How HIPAA Allows Doctors to Respond to the Opioid Crisis" - PDF ·        "When Your Child, Teenager, or Young Adult has Mental Illness: What Parents Need to Know about HIPAA ." ·      
- "Am I my child's personal representative under HIPAA?" ·        
- "When may a mental health professional use professional judgment to decide whether to share a minor client's treatment information with a parent?" ·       
  - "When can parents access information about their minor child's mental health treatment?" (This is a decision flowchart.) ·        
- "Guidance on Responding to an Opioid Overdose." ·       
  - "HIPAA and Personal Representatives for Adults and Minors."  

     HIPAA is an extremely complicated law. This new guidance should make it very clear that, contrary to popular belief, there are exceptions to HIPAA. These exceptions balance patient privacy rights (necessary to build trust with a provider and a willingness to obtain needed health care) with circumstances in which information needs to be shared to ensure the patient receives the best treatment, and other purposes related to health and safety of the patient or others. 
          
 
   
           
Monthly Book Review

              
  It's OK That You're NOT OK
Meeting Grief and Loss in a Culture That Doesn't Understand

by Megan Devine
 
       
        Megan Devine is a former therapist and now writer and speaker on the topic of grief.  She herself suffered the tragic accidental loss of her partner of many years.  Through her own painful experience of grief, as well as, the experiences of many she has worked with, she now provides a discussion of how to care for oneself during this most difficult time and how others can support people in their grief.  She makes it clear that grief and the pain it brings is a normal and natural response to loss of a loved one.  In the same way that each love is different, each experience of grief is different as well.  The pain of grief is not something to be fixed.  It is not a problem to be solved.  While others cannot fix it or diminish it, we can be present to love and support the grieving person and help them bear their pain and loss.
        The book is written for both those that grieve and those that want to help.  Besides describing the author's own experience, the book provides the written experiences of others through the author's "Writing Your Grief" workshops.  She also includes many "Try This" questions as tools to help people dealing with their own grief.
        Devine devotes several chapters to our society's culture of grieving.  Our culture is full of misunderstandings regarding grief which more often than not make the grieving person suffer more, not less. These misunderstandings include seeing grieving as a problem that needs fixing, finding blame for someone's loss, and expecting people to get over their grief and return to normal.  Society also has expectations about how long one should grieve.  Indeed from a medical standpoint longer than six months of grieving becomes a problem.  It is so unkind to have expectations about the length of grieving.  Just as the depth of love is immeasurable so is the depth of pain of grieving.  Indeed, for many there is no time limit.  Life never returns to what it was before.  It is forever changed.  I'm also glad that Devine addresses the issue of stages of grief.  Dr. Kubler-Ross wrote about the stages of dying.  People then extended this to grief and developed an inappropriate expectation of stages in grief.
        Devine spends several chapters on the experience of grief and how to live with and through pain.  One cannot take the pain away but one can try to reduce the suffering that goes with it.  She describes the normal physical, psychological, and cognitive effects of grief.  She talks about the importance of caring for yourself and being kind to yourself.  "Caring for yourself, showing up with love and tenderness for your own excruciating pain."  Every person must choose for themselves how they will deal with grief.  With so much pressure from outside in regard to how to handle your grief, you must have "authority over your own life, making decisions based on your own knowledge of yourself...Staying true to yourself, holding fiercely to your own heart, your own core- these are the things that will guide you."
        The last section of the book discusses the role of friends and family.  The important thing is to provide support, companionship and love- not  answers and solutions.  The griever needs "support to live what is happening.  Support to carry what they are required to carry."  Acknowledge the pain that they are living with and be ready to be in it for the long haul.  "Show up.  Listen.  Don't fix."  Don't give up.  "Your evenness, your steadiness of presence, is the absolutely best thing you can give...It's companionship inside pain.  It's the power of presence, and of bearing witness.  It's not magic; it's love.  Love that doesn't turn away." 
        The appendix to the book is an essay by the author titled "How to Help a Grieving Friend."  If you wish, it can be found on the internet at refugeingrief.com/help-grieving-friend.  Better to pick up the book and read it.  It is truly valuable.


Written by Dr. George Vitek, retired pediatrician who practiced for 28 years in Wilbraham, MA.   Married father of four and grandfather of 9.                                                                                  
       
       
                                                                        
Suzanne Fronzuto
NAMI on Nantucket Program Coordinator

     It's quiet time on Nantucket.  Fog is a frequent visitor, giving almost a dream-like quality to the empty streets and businesses that are shuttered until early April. It is a time to regroup and plan for next steps and new beginnings.
 
     To jumpstart 2018, NAMIonNantucket teachers met with Executive director, Jackie Lane, to discuss upcoming F2F trainings and community initiatives.
Registration is open for F2F which begins in February. We hope to offer a class for Spanish speakers by the end of the month, as well.

                                           
Jackie Lane meeting with Duncan Macallister to set up the David Glidden Fund at Cape Cod Five
The David Glidden Fund will soon be available for island residents needing to travel off-island for mental health related concerns. The fund may be accessed for a variety of needs including transportation, lodging and short-term childcare.



First steps were taken to develop and implement an island-wide, year- long marketing campaign serving the entire community by providing a confidential clearinghouse for information and available services on the island and how to access those services. Stay tuned for updates as this initiative unfolds!
 And From NAMI on Martha's Vineyard 



Many of you have voiced interest in having NAMI become more present on MV.  Behind the scenes we are working to make that happen. We have applied for some local grants to increase funding that can be used for additional programming and service for our island community. 
 

 

Support group attendance is increasing.  We are considering adding another. 

The next Family-to-Family class will be held on Mondays beginning March 5, 2018
 from 6:00 - 8:30 pm in Vineyard Haven.  Call Megan Grennan at 508-939-0681 for more 
information or to register.

 
 
Please consider making a donation specifically to NAMI Cape Cod and Islands and earmark it specifically to Martha's Vineyard. You can do this by clicking on the link below, make your donation, and mention specifically for MV in the comments section.  Or simply write a check to NAMI CC&I and put MV in the memo section and send to 
NAMI CC&I,  
5 Mark Lane.  Hyannis MA    02601-3792
 
 
With this increased funding we can increase our outreach efforts and family support. 
 
Cecilia Brennan
NAMI CC&I   
MV Representative

Please contact Cecilia at 201-981-5123 with questions or interest in becoming involved. 
   

Judge Rosemary Minehan, Ret. Speaks...

On Monday, January 22nd, The Domestic & Sexual Violence Council and Independence House brought retired Plymouth Judge Rosemary Minehan to the Barnstable Villiage Complex to speak on the subject of Massachusetts Mental Health Law.  Judge Minehan explained the differences and complexities of having a person committed for psychological examination.  She highlighted the changes that have taken place over the past couple of decades with the closing of State Hospitals, privatization of mental health, the opioid epidemic as well as the prevalence of dual diagnosis.  The Mental Health Care System is difficult to navigate.  When the Justice System becomes a factor, it is further complicated.   Language is often a factor in the disconnect between the medical community  and the judicial system.  "Judges commit - Doctors admit". 
 
Judge Rosemary Minehan has been on the front lines battling intractable social problems, including the opium epidemic, overseeing training for the District Court judiciary on the application of law in mental health and substance abuse cases. She served as a member of Governor Charles Baker's Opioid Working Group, which was established to study the opioid and heroin epidemic in Massachusetts and to make recommendations on more effective methods for dealing with addiction specifically as it relates to specialty courts.
 
Kim Lemmon
Director of Family Programs



      10 Years Later, Gaps Remain in Mental Health Parity
  
 
Individuals are paying much higher out-of-pocket costs for mental health care than other medical conditions - Millman Inc.
Ten years after the passage of the Mental Health Parity and Addiction Equity Act of 2008, the promise of parity has not been realized, and large gaps still exist between mental health and general medical care, according to a pioneering report commissioned by the Bowman Family Foundation and published by Milliman Inc.

In particular, the report found that out-of-network service use is significantly higher for mental health care than general medical care, forcing individuals to pay much higher out-of-pocket costs for mental health care than other medical conditions. The survey also found that psychiatrists are paid considerably lower than medical and surgical physicians for the same or similar services, meaning no incentives exist for psychiatrists to participate in insurance networks. In fact, participation would result in large, likely unsustainable financial losses.

The Milliman report uses data from two large databases to evaluate commercial insurance claims covering more than 42 million individuals in all 50 states and the District of Columbia from 2013-2015. The report examines the proportion of mental
health and physical health services received from out-of-network providers instead of those who agree to payments at a discounted rate within an individual's insurance network. They also analyzed the amount of money paid to providers by insurance agencies for a particular treatment for a comparison of mental health and general medical physician reimbursement rates.

Findings from the Study
 
.
The survey found large differences between mental health and general medical care.

Inpatient services received out-of-network were 4.2 times higher in mental health care compared to general medical care. For example, an individual looking for inpatient psychiatric treatment is more than four times more likely to receive care from an out-of-network provider and thus incur anywhere from 40-100% of that treatment's costs.

Outpatient facility services received out-of-network were 5.8 times higher in mental health care than in general medicine. This means an individual in psychiatric crisis looking for crisis emergency services or partial-hospitalization is almost six times more likely to receive such care out-of-network and be charged accordingly.

As National Public Radio reported, "The high proportion of out-of-network behavioral care means patients with mental health or substance abuse problems were far more likely to face the high
out-of-pocket costs that can make treatment unaffordable, even for those with insurance." This may mean patients delay seeking needed treatment, potentially never accessing mental health care at all because of the high costs.

The gap between reimbursement rates for providers was even more disparate. Primary care providers were paid 22% more for office visits than mental health care providers, while medical specialty care providers were paid 19% more.

"Together, the findings paint a stark picture of restricted access to affordable and much-needed treatment for mental illness and substance use disorders," writes Mark Moran for Psychiatric News.

Individual states varied widely in both metrics. Nine states, including Massachusetts, Minnesota and New Hampshire, had payments more than 50% higher for primary care providers compared to mental health physicians. Connecticut, Washington and Wisconsin had out-of-network service use almost 10 times higher for that of mental health care than general medical treatments.

The way forward

Henry Harbin, MD, previously the director of a large behavioral health care organization and now a consultant on parity issues, says these results should serve as a wake-up call for all involved.

"We are failing miserably to ensure access to behavioral health treatment," Harbin says. "Insurance companies are making it extremely difficult to get access to in-network care. Imagine an insurance plan offering insurance in a state and saying that 30% of your cancer treatment on average is going to be out-of-network and out of your own pocket. They wouldn't be allowed to write insurance policies like that."

Sadly, this remains the situation with mental health care.

Harbin urges stronger enforcement of existing laws, including a call for federal regulators to immediately audit some of the top insurers.

Ten years after the passage of the Mental Health Parity and Addiction Equity Act of 2008, it is about time.

 
Elizabeth Sinclair
Research Associate
Treatment Advocacy Center
 



God, If You're Not Up There ... 
by Darrell Hammond, an autobiography


Darrell Hammond was the longest running participant on SATURDAY NIGHT LIVE, 14 YEARS. He made up and performed many, many funny political satires (Bill Clinton, Dick Chaney, George Bush, Donald Trump, etc.) 

His childhood was harrowing, being raised by two abusive alcoholics. He himself lived a lifetime of addiction and bi-polar disorder, for which he was hospitalized many times and for which he has been in recovery. 

His book is both funny, entertaining and poignant. 
                               

Family to Family

Family to Family finished up at the YMCA in December and had a reunion in January.  Thank you F2F facilitators Tammy Harper, Katrina Lastih, and Michele O'Brien! 
 
Family to Family is currently running in Buzzards Bay.  Family to Family will begin on Martha's Vineyard on March 5th, and coming to Nantucket will be Family to Family facilitated in Spanish! 
 
We are looking to begin another F2F class in the early spring in the Harwich/Dennis area.  We may also be starting a Family Connections class soon on the Cape.  Please inquire about these courses by calling Kim Lemmon at 508-778-4277 or email klemmon@namicapecod.org

NOTE:  Due to the lack of attendance at the Mashpee Support Group, NAMI Cape & Islands is suspending that Support Group.  Should anybody feel strongly they would like to have access to a meeting in Mashpee, please contact Kim Lemmon at 508-778-4277 or klemmon@namicapecod.org

Dance In The Rain
For Peers, By Peers 

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. 

Dance In The Rain is expanding in many ways in 2018!
We have increased our office hours.
Monday through Thursday 10:00am to 4:00PM
Wednesday we are now open until 6:00Pm
We are now open ever Sunday from 1:00PM to 6:00PM

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




Tidbits...
 
If you shop at the Orleans Stop & Shop, take a closer look at your shopping cart after November 1.  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: 

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!