May 2016


From the desk of Jackie Lane, Executive Director:

            A New Face for Advocacy at NAMI CC&I
The mission of NAMI National, NAMI Massachusetts, and NAMI Cape Cod and The Islands includes EDUCATION, SUPPORT, and ADVOCACY. We, at NAMI CC&I, have spent considerable time and effort over the past two years building up our educational programming including increased Family to Family presentations and special programming such as Think:Kids, the Creative Problem Solving approach to treatment for challenging children developed by the Department of Psychiatry at Massachusetts General Hospital.   We have also hired a part time clinician to help us build relationships with the many resources of the community so we can better offer support to our clients.
Advocacy, the third piece of our mission, is now being aggressively addressed. We are pleased to announce that nationally known Attorney Mary T.  Zdanowicz has joined our staff as an advocacy consultant. Ms Zdanowicz, who specializes in mental health law and guardianships is licensed to practice in Washington, DC, New Jersey, and Massachusetts.
Ms. Zdanowicz was the founding Executive Director of TAC, the Treatment Advocacy Center located in Arlington, Virginia. TAC is a national non- profit dedicated to eliminating barriers to treatment for individuals with severe mental illnesses, such as schizophrenia and manic-depression. In this capacity she administered programs designed to inform the public, policymakers, and caregivers about the latest research developments in mental health and the benefits of early intervention and treatment for severe mental illness. Mary has also served on several boards, commissions, and panels on mental health policy.
We welcome Mary who will monitor legislation at the state and national level, write position papers, and lead our effort to highlight the most important mental health issues and challenges facing Cape Cod and the Islands. At this time we are focusing on the shortage of mental health beds on the Cape and Islands and the move to privatize services. We welcome your input and we look forward to actively adding our collective voices in advocating for the right and the fair treatment of the mentally ill.
Become An Advocate--Every Person Counts   
The Dangers of 
Privatized Mental Health Care
Why has the state Department of Mental Health proposed transferring responsibility for emergency mental health services to the state's behavioral health managed care company ("Privatizing mental health teams won't save money," My View, May 2)? O n March 30, the state auditor approved the department's plan to privatize emergency services in the state's southeast region. Emergency services under the proposed managed-care contract will cost about $7.9 million, roughly half of the $14.9 million that the department  currently spends for these services. How will the quality of these services be affected? Is there another reason that Department of Mental Health is ready to relinquish control? 
It is important to understand the role of mental health emergency service programs, known with ESPs. People experiencing acute mental illness crises are typically brought to emergency rooms by family, emergency medical services or law enforcement. ESPs assess patients to determine if they meet the criteria for inpatient psychiatric hospitalization. If needed, ESP staff members locate an acute psychiatric bed for individuals who meet the criteria for inpatient hospitalization.
However, finding an available acute inpatient psychiatric bed is difficult, because they are almost always full. As a result, patients sometimes wait days in emergency rooms for an open bed, a situation that is referred to as "boarding." Rather than opening new psychiatric beds, states often respond by making admissions more difficult. This is not new. As far back as the 18th century, when London's Bethlem Hospital (also known as Bedlam) became overcrowded, admission was limited to "lunatics who were a menace to themselves or others." One observer noted "the strict admission criteria seem to have been effective in keeping the numbers low."
While individuals who were "gravely disabled" due to mental illness could be hospitalized in the past, now most states use "danger to self or others" as the limiting criterion for hospitalization. But this is a subjective standard whose interpretation can be manipulated so that the level of dangerousness that warrants inpatient treatment becomes higher when there are fewer beds. States use "gatekeeping" mechanisms to keep the census of state hospitals constant by ensuring that patient admissions do not exceed discharges.
When the state proposed closing Taunton Psychiatric Hospital, the Legislature commissioned a study of the impact the closure would have in the southeast region, including the Cape and Islands. The final report revealed that, over a period of four consecutive years, the highest number of admissions to state psychiatric hospitals originated in this region of the state. On average, 37 percent of all state psychiatric hospital admissions originated in the state's southeastern corner, which has less than 20 percent of the population.
The report concluded "the higher than proportional admission rates might be an indication of the need for improved access to and performance of ESPs in the region." The southeast is the only region in which the Department of Mental Health manages the ESP resources. In all other parts of the state, Massachusetts Behavioral Health Partnership, the behavioral health managed-care company, contracts for services.
All of this raises questions about the impact that privatizing ESPs will have on the Cape and Islands:

            How can the quality of services be maintained at half the cost?

  • Will patients have to wait longer to be assessed in emergency rooms?
  • The legislature found that managed-care ESPs admitted fewer people to                     state hospitals. Is that why the department wants to hand over control of the ESPs to the managed-care company?

            Will patients experiencing psychiatric crises be turned away until they                are sufficiently dangerous?


A lawsuit challenging the department's plan is pending in Suffolk County Superior Court based on language in the current budget that states "there shall not be a reduction in services in the Southeast Area related to the alignment of state operated emergency services." So there may still be time to raise these and other questions. But we must act fast. This proposal affects all of us.
Written byMary Zdanowicz, of Eastham,  who is an attorney specializing in mental illness law and policy. She is the author of "Keeping the Mentally Ill out of Jail,"   published in the Albany Government Law Review.    She is also a guardian for two people with serious mental illness. 


When Your Child Has A Mental Illness
A Mother's Poignant Story
In January 2015 our daughter, a freshman in high school was emotionally bullied by a fellow student. Shortly after she began having panic attacks and after a terrible episode in school she never returned.  She couldn't get out of bed, didn't care about eating.  She stopped texting her friends and her world became very narrow and isolated.  
In March she was diagnosed with anxiety, depression, and suicidal ideation. She had lost almost 15 pounds, was not sleeping, and wanted to take her life.  She started therapy and was put on medication. By the end of March, she was hospitalized for the first time at McLean Southeast. 
Outside the safety of a hospital she once again became unstable and within a month was hospitalized again, a pattern that continued for almost a year.  Throughout this time there were many medication changes, more therapy and a further diagnosis. She began cutting and demonstrating other self injurious behavior.  How did this happen to our little girl?  
My parents gave us an article from the local paper about a free course called Basics sponsored by NAMI Cape Cod and The Islands.  With that six week course our education began into our daughters struggle with her brain disorder.  We were clueless to the difficulties that lay ahead, but we knew we needed help.  Our instructors were exceptional teachers, and both had a child with a mental illness. We were also supported by the other people in the class who were in the same boat. Many times I was so shaken by our daughter's suffering that I could not speak. My husband, who was deeply worried and was used to being able to fix things himself, spoke instead. He asked the hard questions that we both needed to verbalize such as, "My daughter wants to kill herself and I don't know why." I am so grateful that he came.
Basics provided the information including studies and sources that we needed in a concise, structured format. We knew we had no time to waste. A parent advocate came to the last class. She told her story and spoke about the importance of record keeping. She helped the class set up a binder to keep track of behavior, doctor appointments, medications etc. Because I followed her instructions I was able to use the documentation to help my daughter get appropriate care. After four hospitalizations all around her menstrual cycle, I asked her doctor if some of her symptoms could be explained by PMDD (premenstrual dysphoric disorder). Her doctor agreed, and her treatment was altered. 
You are not alone! We felt that way because of NAMI Cape Cod and The Islands. After Basics we took the 12-week Family to Family course. The room was overflowing with families seeking information about their loved one's illness. One topic they covered was "the Forgotten Sibling". We were able to better understand how hard it was for our older child to watch his sister struggle with suicidal thoughts and self harm and not know what to do to help. We learned to address his needs and still keep him on board to be present for his sister but not feel responsible.
Written by a recent graduate of Family to Family


From our Team Captain Nancy Bacher:        
Hi Everybody, 

First of all, a huge thank you to every one of you for your commitment in walking for NAMI or supporting the walkers. I believe there were 42 of us, not counting the two little ones. I hope your experience was a positive one, as it was for me, in spite of a few "bumps in the road." 

The total amount raised is well over $6,000, and we actually have until June 27 to complete all of our fund raising.  

I have posted some pictures on my facebook site as well as on the NAMI Massachusetts site. If you have pictures to share, that would be great. I plan to duplicate one of them to send to all my donors in a little thank you note. 
We should start thinking about next year and what role we want to play in a 2017 walk and if we would prefer it to be local or go back to Boston. You will be hearing from us soon as to whether or not your experience was a positive one. 


In recognition of Mental Health Month, the First Congregational Church of Chatham sponsored a program on mental health awareness and community support. The featured speaker of this event was the Reverend Sarah Griffith Lund, author of Blessed are the Crazy:  Breaking the Silence About Mental Illness, Family, and Church.
Sarah told the "secret" and heartbreaking story of her family and its dark journey after her brilliant father was diagnosed with serious mental illness, a situation that needed to be hidden from the world even as the family plunged into poverty and really needed help and support. Sarah's message is to bring mental illness and all of its ugliness into the light so it can be examined and be shared. When we are able to do that we find that We Are Not Alone.
This universal truth of "breaking the silence" makes this book valuable  for everyone regardless of their religious beliefs.

With mental illness affecting one in four or five people at any given time, shared experiences are easily found. Much of NAMI's programming, including Family to Family, is especially effective because of the shared experience of the students and the teachers.
The evening and program, organized by NAMI CC&I supporter, Kathy Hamilton, a member of the church congregation, featured NAMI CC&I. Executive Director, Jacqueline Lane, was invited to give an overview of NAMI's programs and services. A question and answer period followed the presentations and several concerns about Cape Cod mental health care and resources were posed and discussed.
A freewill offering was taken in the support of the community education and support provided by NAMI CC&I. We wish to thank the First Congregational Church of Chatham and Kathy Hamilton for featuring NAMI CC&I at this event.


Dance in the Rain Whole Person Approach
Peer to Peer Services

Individuals with mental health challenges helping and supporting one another and the families that support them.
           Bridging the Gap Peer/Family Program

Helping to bridge the gaps in family relationships that develop when there is a mental health challenge with in the family unit.

Come as a family or come alone.  Learn from persons' with mental illness at all stages of healing and learn from families at all levels of experience.
Begin learning how to open dialogue within the family to promote healing and understanding.

I n coalition with NAMI Cape Cod & the Island Dance in the Rain is offering this program to help family and mentally challenged individuals learn to understand each other.  Ask questions, bring up concerns, thought and emotions in a completely anonymous way.  Hear both sides of the story to gain better understanding of the family dynamics ans sometimes dysfunctions family dynamics that develop.

The meeting is always the second Tuesday of the Month.
The next meeting is: 
          Tuesday evening June 14th from 6:30pm to 7:30pm
Location: Dance in the rain Office - Upstairs at 145 Barnstable Road last office down the hall on the left.
Bring a dessert to share and let the healing and understanding of living as a family with a mental health challenge within the family unit.

    NAMI Collaborates

We have been very busy getting the word out about NAMI
     - Jud represented NAMI CC&I at We Can's presentation on Grandparents Raising      Grandchildren and answered questions from the participants
     - Jud met with the staff of Community Connections to discuss NAMI and its services
      - Jackie met with the Yarmouth Senior Center to discuss NAMI and its services
  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.
Inclusions 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.