June  2016

From the desk of Mary Zdanowicz, Esq.

On June 15, 2016, the Helping Families in Mental Health Crisis Act of 2015 (H.R.2646) passed the House Energy and Commerce Subcommittee on Health by a unanimous vote. This is a major accomplishment that is the result of hard work on behalf of advocates and dedicated legislators, such as the sponsor, Rep. Tim Murphy of Pennsylvania. It is a significant piece of legislation that will benefit people with serious mental illness and their families. Here are a couple of key provisions:
HIPAA & Caregivers
"I can't talk with you about your family member's condition without his/her consent."
"I can't tell you whether he/she is at this hospital."
HIPAA ( Health Insurance Portability and Accountability Act of 1996) can be a serious roadblock when trying to help a loved one with mental illness. HR 2646 would reform HIPAA to give caregivers limited access to information when it would benefit the individual who is being treated for mental illness. There are limited situations in which a healthcare provider can share information with a caregiver. For example, sharing the information must beneficial to the individual's treatment or the individual's condition might deteriorate if the caregiver is unable to participate in treatment discussions. The information that can be shared is limited, but may include diagnoses, treatment plans, appointment scheduling, medications, and medication-related instructions. It would be a welcome change.
Assisted Outpatient Treatment
"Prior studies have demonstrated that mandatory mental health treatment in an outpatient setting can "reduce hospital readmissions and total hospital days when court orders are sustained and combined with intensive treatment, particularly for individuals with psychotic disorders," and can reduce the probability of re-arrest among individuals with serious mental illness and "with a prior history of multiple hospitalizations combined with prior arrests and/or violent behavior" as well as the "severity" of said re-arrest."  Massachusetts General Court Mental Health Advisory Committee Report, June 30, 2014
Despite the fact that the Mental Health Advisory Committee recognized the benefits of Assisted Outpatient Treatment (AOT) in a report two years ago, Massachusetts is still one of only four (4) states that does not have AOT programs. As a result, citizens with serious mental illness on the Cape & Islands will not benefit from the federal Substance Abuse and Mental Health Services Administration (SAMHSA) grants for AOT that were announced in April 2016. HR 2646 would extend the SAMHSA AOT grant program through 2020. While there is no AOT law in Massachusetts, there is a Pilot Program that may be extended if the Senate FY 2017 amendment is adopted in the final budget. [See article on the State of the Budget FY 2017 - Department of Mental Health]
FY 2017     
The budget for Fiscal Year 2016 ends on June 30, 2016. The Conference Committee from the House and Senate are still in negotiations. However, the following issues are the subject of the discussions.
Funding in two budget categories could be increased this year:
  • Adult Mental Health Services & Community Placement
  • Operation of Hospital Facilities and Community-Based Mental Health Services
Funding for two budget categories will probably not change significantly:
  • Homeless services
  • Emergency Service Programs and Acute Inpatient Mental Health Care (Note: it is still not clear when or if privatization of emergency services on the Cape & Islands will commence.)
Two amendments that were adopted in the Senate budget are noteworthy:
State Hospitals
State Hospital Funding is increased over FY 2016 levels in all three budgets.
  • DMH shall not take action in fiscal year 2017 to reduce the number of state-operated continuing care inpatient beds.
  • DMH shall maintain not less than 676 inpatient beds in its system in fiscal year 2017
  • Five new beds will operate at Taunton State Hospital*
  • Not less than 50 beds shall be continuing care inpatient beds on the campus of Taunton State Hospital

*Note: The addition of five new state hospital beds may not sound significant. However, while modest, it is at least a reversal of the decades long trend of closing hospital beds.
Assisted Outpatient Treatment
Funding will continue for the assisted outpatient treatment pilot program at Elliot Community Human Services to treat residents who suffer from serious and persistent mental illness and experience repeated interaction with law enforcement or have a high rate of recurring hospitalization due to their mental illness, either through a voluntary agreement with the resident, or by court order mandating that the resident receive the treatment described in this program.
DMH, in conjunction with Elliot Community Human Services, shall produce an Assisted Outpatient Treatment Pilot Analysis Report that includes baseline and current metrics related to clients served including, but not limited to:
(i)     behavioral and physical medical diagnosis;
(ii)    status of activities of daily living, including food, shelter, and employment;
(iii)   psychiatric hospitalizations;
(iv)   treatment history; and
(v)    insurance status;
The report shall define the factors that proved successful in treating pilot participants including practices used and type of staff functions necessary for success in treating pilot participants; provided further that the report shall identify issues and practices that present barriers to successful treatment; and provided further that the report shall include a cost analysis of treatment. The report shall also include a plan for creating a sustainable program based on information from the analysis report and shall include a proposal for a sustainable course of funding to implement the program.

Access to community based psychiatric services on Cape Cod & the Islands is a serious issue. The following letter, published in the Cape Cod Times, provides insight into the problem.
Reimbursements lag for mental health care  
Jun. 18, 2016
We applaud the work of community-based mental health and addiction treatment provider organizations and join them in the call for strengthening provider reimbursement to increase access to the full range of outpatient behavioral health services so needed by many Massachusetts residents ("Inadequate reimbursements," editorial, June 2).
The state's 50 community health centers - including five on the Cape and Islands - are challenged inproviding the fully integrated primary care and behavioral health services so necessary during this opioid epidemic. Many of the staff roles that support outpatient mental health and addiction services are not paid for by insurance. Also, regulatory barriers restrict the sharing of information among health care providers.
Inadequate reimbursement for psychiatrists to help manage medications for patients with complex mental health conditions continues to be a major care gap in community-based settings. Insufficient reimbursement directly affects access to mental health services for our most vulnerable populations.
We appreciate Gov. Charlie Baker's focus on the issue of behavioral health access, particularly as it relates to the state's opioid crisis. We look forward to working with his administration to find solutions for strengthening our efforts in the treatment and prevention of substance abuse and mental illness.
Nancy Bucken,
Executive director, Harbor Community Health Center
 This letter was also signed by Karen Gardner, Cynthia Mitchell, Heidi Nelson and Pat Nadle (interim), chief executive officers of, respectively, Community Health Center of Cape Cod, Island Health Care, Duffy Health Center and Outer Cape Health Services.

Spotlight On 
This is Schizophrenia

  Scientists open the 'black box' of schizophrenia with dramatic genetic discovery
By Amy Ellis Nutt January 27

For the first time, scientists have pinned down a molecular process in the brain that helps to trigger schizophrenia. The researchers involved in the landmark study, which was published Wednesday in the journal Nature, say the discovery of this new genetic pathway probably reveals what goes wrong neurologically in a young person diagnosed with the devastating disorder.
The study marks a watershed moment, with the potential for early detection and new treatments that were unthinkable just a year ago, according to Steven Hyman, director of the Stanley Center for Psychiatric Research at the Broad Institute at MIT. Hyman, a former director of the National Institute of Mental Health, calls it "the most significant mechanistic study about schizophrenia ever."
"I'm a crusty, old, curmudgeonly skeptic," he said. "But I'm almost giddy about these findings."

The researchers, chiefly from the Broad Institute, Harvard Medical School and Boston Children's Hospital, found that a person's risk of schizophrenia is dramatically increased if they inherit variants of a gene important to "synaptic pruning" -- the healthy reduction during adolescence of brain cell connections that are no longer needed.
In patients with schizophrenia, a variation in a single position in the DNA sequence marks too many synapses for removal and that pruning goes out of control. The result is an abnormal loss of gray matter.
[Schizophrenic patients have different oral bacteria than non-mentally ill individuals]
The genes involved coat the neurons with "eat-me signals," said study co-author Beth Stevens, a neuroscientist at Children's Hospital and Broad. "They are tagging too many synapses. And they're gobbled up."
The Institute's founding director, Eric Lander, believes the research represents an astonishing breakthrough. "It's taking what has been a black box...and letting us peek inside for the first time. And that is amazingly consequential," he said.
The timeline for this discovery has been relatively fast. In July 2014, Broad researchers published the results of the largest genomic study on the disorder and found more than 100 genetic locations linked to schizophrenia. Based on that research, Harvard and Broad geneticist Steven McCarroll analyzed data from about 29,000 schizophrenia cases, 36,000 controls and 700 post mortem brains. The information was drawn from dozens of studies performed in 22 countries, all of which contribute to the worldwide database called the Psychiatric Genomics Consortium.
One area in particular, when graphed, showed the strongest association. It was dubbed the "Manhattan plot" for its resemblance to New York City's towering buildings. The highest peak was on chromosome 6, where McCarroll's team discovered the gene variant. C4 was "a dark corner of the human genome," he said, an area difficult to decipher because of its "astonishing level" of diversity.
[Influential government-appointed panel recommends depression screening for everyone]
C4 and numerous other genes reside in a region of chromosome 6 involved in the immune system, which clears out pathogens and similar cellular debris from the brain. The study's researchers found that one of C4's variants, C4A, was most associated with a risk for schizophrenia.
More than 25 million people around the globe are affected by schizophrenia, according to the World Health Organization, including 2 million to 3 million Americans. Highly hereditable, it is one of the most severe mental illnesses, with an annual economic burden in this country of tens of billions of dollars.
"This paper is really exciting," said Jacqueline Feldman, associate medical director of the National Alliance on Mental Illness. "We as scientists and physicians have to temper our enthusiasm because we've gone down this path before. But this is profoundly interesting."
There have been hundreds of theories about schizophrenia over the years, but one of the enduring mysteries has been how three prominent findings related to each other: the apparent involvement of immune molecules, the disorder's typical onset in late adolescence and early adulthood, and the thinning of gray matter seen in autopsies of patients.

"The thing about this result," said McCarroll, the lead author, " it makes a lot of other things understandable. To have a result to connect to these observations and to have a molecule and strong level of genetic evidence from tens of thousands of research participants, I think that combination sets [this study] apart."
The authors stressed that their findings, which combine basic science with large-scale analysis of genetic studies, depended on an unusual level of cooperation among experts in genetics, molecular biology, developmental neurobiology and immunology.
"This could not have been done five years ago," said Hyman. "This required the ability to reference a very large dataset . ...When I was [NIMH] director, people really resisted collaborating. They were still in the Pharaoh era. They wanted to be buried with their data."
The study offers a new approach to schizophrenia research, which has been largely stagnant for decades. Most psychiatric drugs seek to interrupt psychotic thinking, but experts agree that psychosis is just a single symptom -- and a late-occurring one at that. One of the chief difficulties for psychiatric researchers, setting them apart from most other medical investigators, is that they can't cut schizophrenia out of the brain and look at it under a microscope. Nor are there any good animal models.

All that now has changed, according to Stevens. "We now have a strong molecular handle, a pathway and a gene, to develop better models," he said.
Which isn't to say a cure is right around the corner.
"This is the first exciting clue, maybe even the most important we'll ever have, but it will be decades" before a true cure is found," Hyman said. "Hope is a wonderful thing. False promise is not."

Reprinted from NAMI affiliate newsletter

From the Treatment Advocacy Center

Antipsychotic Medication May Save Lives
Often overlooked in debates over the merits and drawbacks of antipsychotic medication is its role in reducing suicide by individuals with schizophrenia, who die approximately 20 years younger than their unaffected peers in the United States.
"One way anti-psychiatry groups trivialize psychosis and marginalize psychiatry is by emphasizing the adverse effects of antipsychotic medications while denying or minimizing their benefits," writes Ronald Pies, MD, in the June issue of Psychiatric Times. "To be sure, the well-recognized metabolic, neurological and cardiovascular risks associated with many antipsychotic medications must be taken very seriously. Moreover, antipsychotics (APs) are often used when they are not needed....
"On the other hand, there is convincing evidence that in patients with chronic schizophrenia, APs play a crucial role in maintaining remission, averting relapse, improving quality of life and - importantly - reducing overall mortality" (author's emphasis).
In other words, despite their medical side effects, antipsychotic drugs appear to save lives.
Antipsychotics and Suicide Prevention 
Pies writes that "even many psychiatrists" may be unaware of the role antipsychotic medications play in reducing suicide among individuals with schizophrenia, whose lifetime risk of killing themselves is at least 10 times that of the general public. He cites research that "the only consistent protective factor for suicide" is delivery of and adherence to effective medication, particularly clozapine, the only medication approved by the FDA for the prevention of suicide.
While clozapine is well-documented for its effectiveness in reducing suicidal behavior (e.g., suicide attempts, hospitalizations and rescue interventions), Pies reports "there is accumulating evidence that antipsychotic medication in general is associated with decreased risk of suicide" in schizophrenia. He cites studies with findings of:
  • Excess mortality mostly in schizophrenia patients not taking antipsychotic medications (26 suicides in patients not taking APs vs 1 in patients taking them out of a population of 2,230 patients)
  • 400% increase in risk of attempted suicide among patients who stopped taking prescribed olanazapine or risperidone for at least 30 days
  • Maximum anti-suicide benefits at higher dosages of antipsychotics
"It would be incorrect to infer from this brief review that the optimal treatment of schizophrenia is simply a matter of giving patients antipsychotic medication," writes Pies, a professor of psychiatry at SUNY Upstate Medical University and Tufts University School of Medicine. Psychosocial services such as assertive community treatment, supported employment and family-based services also confer important benefits, he said.
"But there is little question that, for patients suffering the chronic, debilitating symptoms of schizophrenia, antipsychotic medication is a critical component of treatment - and may literally be lifesaving."


Surviving Schizophrenia: 
A Family Manual 
 is indeed " The Indispensable Guide to Today's Most Misunderstood Illness"  as it is billed.

This is the 6th Edition by Dr. E. Fuller Torrey, the world's leading expert on schizophrenia,  who includes over 30 years of both personal and professional experience along with the latest research findings on what causes this insidious disease as well as information on the newest medications. The book is filled with both  neuroscientific facts, common sense advice, and answers to the questions families are often too upset or afraid to ask.

Filled with quotes that help the reader understand the inner workings of the mind of the schizophrenic which is often a mystery, the book adds such important tenets as:

     "It should always be remembered that the behavior of persons
       with schizophrenia is internally logical and rational; they do things                   for reasons that, given their own disordered senses and thinking,                       makes sense to them"

Psychology Today writes that Surviving Schizophrenia is a "comprehensive, realistic and compassionate approach...Should be of tremendous value to anyone who must confront these questions."




Nauset Newcomers Support NAMI CC&I

Peter Lancellotti on behalf of the Nauset Newcomers gives a check to NAMI CC&I Executive Director, Jackie Lane.  We are very grateful for their support.

Family to Family Class 
Thanks NAMI CC&I

At the Class 12 Party, two members of the group thanked NAMI CC&I for the Family To Family course, surprising us with a gorgeous and delicious cake.


Important Note:

The Boston Sunday Globe June 26, 2016 Spotlight Team
has begun an important series on:
                The Desperate and the Dead
on the "grossly inadequate" services to the mentally ill in Massachusetts leading to "desperation and, far too often, death"

This is a must-read for anyone interested in mental health services in Massachusetts.

Upcoming Family to Family Class

The next Family to Family Class will be held at the Pocasset Behavioral Health Center on Tuesday evenings.  
Call the office at 508-778-4277 for more information or to register.

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 July 12th 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.

Two exciting workshops just for Teens (coed, ages 13+)

(1)  Mixed Media Altered Canvas Art workshop held at the Sandwich Public Library on Thursday, June 30 from 5:00 - 8:00 pm

(2)  Steampunk Workshop Just for Teens - Create Cool, Original Works of Art with local artist Nettie B, held at the Brewster Ladies Library by the Teen Artists Coalition of Cape Cod on Tuesday, July 19 from 2:00 - 5:00 pm

For more information or to register, click below for the flyers:          
These programs have been funded through a special grant 
from the Arts Foundation of Cape Cod

  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.