From the desk of Jackie Lane, Executive Director NAMI CC&I
This is Thanksgiving week, and as we anticipate a long holiday weekend and hopefully some quality family time, we need to reflect on exactly what are the important things for which we are thankful. As an agency that welcomes support calls, offers mental health education, and advocates for those in need, we are inundated with tragic stories, desperate situations, and often unsolvable problems on a daily basis. It becomes very easy to see our society as uncaring and unresponsive to the needs of the most helpless. That being said, I am finding, as I think on the “thankfulness” topic, that I can find a plethora of people for which we at NAMI CC&I are thankful.
We could not do what we attempt to do without the collaboration of our community partners. We are thankful to have a hospital with a strong Behavioral Health department with an inpatient unit as well as a strong partial hospitalization program, as well as an inpatient unit and partial program under DMH in Pocasset. We appreciate being able to communicate with our Bay Cove Emergency Service team to often avoid hospital admissions. We are thankful the forward-thinking police departments who have been so receptive to learning about mental health issues and how to handle those calls in a sensitive manner. And there are all the other agencies in our resource guide on whom we can call for help and advice. We also appreciate and rely on our relationships within the school systems as we all work together to help our youth, many with social/emotional issues, make the most of their opportunities in a very fast moving and stressful world.
We are also very fortunate to have Cape and Island Senators and Representatives acutely attuned to the mental health needs of our region. It is very gratifying to be able to communicate directly with those on Beacon Hill and get an immediate response.
And finally, but perhaps most importantly, we want to thank the family/friend caregivers whose daily lives are constantly impacted in challenging ways by virtue of having a family member living with a mental health issue. These caregivers struggle to find resources where they are limited, attempt to understand illnesses that are still being researched, work around privacy laws and legal systems that often hamper progress, sacrifice household income to pay for treatments not covered by insurances, all the while attempting to balance work and other relationships. We find that often, our clients need someone with whom to talk and to validate their struggles as much as they need to find solutions. These caregivers are the true heroes in the fragmented mental health care system as it exists today.
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The following film clip exemplifies the best in compassionate and informed care and support of a loved one with mental health issues. Chris passed away this fall, but during his life, he was one of the very fortunate, one who had the kindest as well as the most informed of advocates in a family member and caregiver.
So, let’s be thankful for all of those who care. A society is only as good as it treats its most needy members. Happy Thanksgiving. We have a lot of people, people who care and caregivers, to be thankful for!
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James P. McGuire, MD
Psychiatrist & NAMI CC&I Board Membe
r"
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The fall and winter seasons are times for reflection and renewal.
Many winters ago, I was at Green airport outside of Providence. It was mid-December. As I stepped out of the physical warmth of the airport, I began to shiver in a winter drizzle waiting for a cab. Standing there I noticed a young mother nursing and singing to her infant on the nearby bench and instantly felt warm and grateful for their presence.
Holiday seasons in our culture are driven by unrealistic expectations and demands that can bring anxiety, depression and disappointment.
Neuroscience has taught us that human beings are built with not one but two primary reward systems in our brains. Both are needed for our survival. However, they work in very different ways and seek different rewards. When they work collaboratively, they are terrific. When they work in competition or in isolation and not collaboratively, we can have significant problems.
One of the reward systems attends to our needs to
ACQUIRE
things such shelter, partners, and social status as well as "stuff." The other reward system attends to our need to
BELONG
, to feel safe and loved in our connection with our community. When these reward systems become skewed to acquisition of things rather than to belonging in the warmth of connection and safety with people, we as human beings, are in trouble. Without the
Belong
system we are adrift in anxiety, unable to explore and share our world with others. The most basic need for emotional survival is to be secure in the sense that we belong, that we are connected to others.
The holiday season can be particularly difficult for patients and families with mental illness because of the demands in our culture to
AQUIRE.
I am always grateful at this time of year for the families and community members who help in the support and care for people with mental illness throughout the year, day in day out. I work with the constant reminder of how these partners and communities soothe, suffer, heal and abide with their kin through oftentimes great frustration, with resolve and kindness.
I am grateful for NAMI Cape Cod and the Islands for their tremendous efforts to unite our community in collaborative efforts to better understand and care for each other’s emotional needs.
There are many helpful suggestions for the holidays in books, magazines, and the internet for how to survive the holidays. My recommendation to all of you for the holidays is to pay much more attention to the needs of the
Belong
system and to resist the siren's call of the
Acquire
system.
In this Holiday season one way to relieve stress is to help out where you belong to lessen the work loads of those who organize the holidays. Find ways you can make the work of the holidays a shared task. Do things together whether cooking meals and baking cookies, singing songs, going to services and/or events with your faith group. Nothing is more rewarding than doing with and for others. Renew old and new relationships. Let others know by your presence that they are part of your world. And remember to be especially kind to yourself, to your kin and to all of the people in your world. I wish you peaceful and happy holidays.
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MASSACHUSETTS Needs Robust Involuntary Outpatient Treatment, Not Flimsy Law
Before the 1970s, the United States presumed that not being psychotic was better than being psychotic. If the psychotic person couldn't recognize this, the state took care of her or him. It didn’t ask what the psychotic person preferred. But since then, the standard has changed, and this change is embedded in Massachusetts’ Rogers Guardianship (RG) legislation. RG involves inpatient and outpatient court-ordered antipsychotic medication.
The Rogers judgment is case law. It didn't come from a bill. The Rogers trial began in 1977 and a federal District Court Judge concluded the case in 1979, creating the RG. Appeals were attempted, but the United States Supreme Court chose not to address the appeals. The Rogers ruling became the federal legal standard, involving the right to refuse treatment because of its substituted judgment standard. This standard means that when you are deciding for another person, you can only decide what this person would have decided.
Many states have pushed back against this by adopting Assisted Outpatient Treatment (AOT). What’s the difference between RG and AOT? There are far more limitations to outpatient RG than to AOT. AOT is more robust than outpatient RG for a variety of reasons:
1)Outpatient RG involves no interdisciplinary treatment team, while AOT involves programs mimicking the Program of Assertive Community Treatment (PACT) model.
2)Outpatient RG just involves medication (it can allow the Court to order other treatments, but these are not typically used for psychosis), while AOT involves therapeutic modalities beyond medication for psychotic people, including psychosocial rehabilitation.
3)There is no consequence for the recipient who doesn’t adhere to outpatient RG, while many AOT programs allow for involuntary transfer of its recipients to the hospital for nonadherence to treatment (e.g., New York:
https://www.omh.ny.gov/omhweb/kendra_web/kqtreatmnt.htm
, Maine:
http://www.mainelegislature.org/legis/statutes/34-B/title34-Bsec3873-A.html
). I have never noted nonadherence to recommended treatment on any Section 12 I authorized because the law has not allowed this. Nor have I ever noted nonadherence to the outpatient RG on any Section 12 I authorized because the law has not allowed this. And Mass.’s involuntary transfer/hold law is among the most restrictive in the United States.
“How long is the antipsychotic treatment plan valid, and can it be extended? If the Court approves the antipsychotic medications treatment plan, the Court will schedule a hearing date for a Periodic Review, generally in 12 months, and will give a date on which the treatment plan will expire. The expiration date is usually 14 months from the date of the hearing, but some Courts may make the expiration date the same date as the review date.” The Rogers treatment plan does not have to be reviewed more frequently than yearly. Many AOT programs require the interdisciplinary treatment team to review the treatment plan every three months.
5)There are countless studies showing the effectiveness of AOT, as I detailed in
Breakdown.
I tried to find a research study and found no study which shows the effectiveness or ineffectiveness of outpatient RG, other than those which psychiatrist Jeffrey Geller conducted in the 1990s.
-Per the American Psychiatric Association’s Mandatory Outpatient Treatment RESOURCE DOCUMENT (PDF),
“Geller, of U Mass, has published two small studies. In one, he describes three cases of coerced community treatment in Mass. each with profoundly positive results (Geller 1992). In that program, patients were entered into coercive treatment (an informal program conducted under the emergency hospitalization provision of the Mass. civil commitment statute) because of histories of psychotically-based dangerousness, high utilization of inpatient services and chronic noncompliance. The treatment was coercive in its structure because it did not allow for alternative sites for treatment, choices of psychiatrist or changes in treatment plans, and noncompliance resulted in commitment. In each of the cases, hospitalization was dramatically reduced during the coerced treatment periods. In one of those cases, the patient had 33 hospital admissions during 26 years, with a median community tenure of seven days. During the first period of coercion, which lasted eight months, he was medication compliant, employed part-time, socially appropriate and required no hospital admissions. Hethen was released from coercive care and subsequently was committed four times to the state hospital. After re-initiating coercive community treatment, however, the patient again did remarkably well. Although he did have one brief admission, he had remained free of inpatient care 1,054 days prior to that time. In another small study in Mass. (Geller, Grudzinskas, et al. 1998), 19 patients with court orders for outpatient commitment were matched to all and to best fits on demographic and clinical variables, and then to individuals with the closest fit on hospital utilization. Outcomes indicated the commitment group had significantly fewer admissions and hospital days after the court order.”
Based on my research and experience, I strongly suspect that the number of ineffective uses of outpatient RG is much higher than the number of effective uses of it. 19 and 3 are small numbers among the total number of psychotic people.
6)The substituted judgment standard requirement of RG is problematic, and apparently, there’s no way a Court can overrule it. This standard is a loophole that impeded the positive therapeutic progress of an outpatient case I’m personally aware of. When the mother of a man with schizophrenia and anosognosia attempted to secure RG for him, he said in his “sound mind” that he could never agree to take medication because he did not have a mental illness. His mother wanted him to take antipsychotic medication, but the Court refused her guardianship.
"Before Rogers authority is granted, the court must find that the person:
1.
Is incapacitated and not competent to give informed consent with respect to being treated with antipsychotic medications, and
2.
If incompetent, determine what the person would choose to do if they were competent, with regard to taking antipsychotic medication(s). This is called a 'substituted judgment' standard, where the court substitutes itself for the incapacitated person and attempts to determine what the person would decide for themself if they were competent."
The black robe effect, that people typically follow Judges' orders because they're authoritative, can only have full weight if the state says to the mentally ill person, “no, we do not appreciate your choice to be a danger to the public, and as a matter of public safety, we order you to stay on medication.” There shouldn't be any wavering, but substituted judgment doctrine clearly makes the Judge pay equal attention to the sick person’s preference to be untreated. It’s a mixed message, to say the least.
In other situations, the law presumes that life is better than death. For that reason, if you write a suicide note, attempt suicide, and you're brought into a hospital emergency room unconscious, nobody will ask if you had a preference to be alive or not. Society isn't asking what you wanted - it presumes that it's better to be alive than dead, and they will do everything they can to revive you and persuade you to agree that it’s better to remain alive. But RG doesn’t presume that well-managed psychosis is better than profound psychosis. Nor does it thoroughly consider public safety. It doesn’t oblige the state to correct the situation. The Rogers decision dictated that mentally ill people have the radical right to choose dangerous psychosis.
AOT doesn't include the substituted judgment standard. AOT statute is based on the presumptions that:
- Well-managed psychosis and safety are better than unmanaged psychosis and danger.
- Society has a stake in keeping everyone healthy and safe if possible.
- The public has a right to safety.
AOT upholds the notion that safety is paramount regardless of what the mentally ill person wants. RG is missing this. In
Breakdown
: “Laws are supposed to protect the civil liberties of everyone. But in a zealous attempt to protect the rights of mentally ill people, legal limitations abandon their rights.”
“In Mass. state prisons, approximately 27% of prison inmates have previously been diagnosed with a serious mental illness, which is high compared to the overall U.S. prison population...The economic burden of each serious mental illness in adults is estimated to be at least $127 billion for the U.S. and $2.8 billion for Mass.” The “Contact with Criminal Justice System” and “Economic burden of serious mental illness” sections here are especially telling.
Further statistics showing the failures of Massachusetts:
Due to the limitations of both AOT and outpatient RG or equivalent in other states, having both in Mass. would yield better results than having just RG. I understand Courts could easily argue against having both for a person at the same time. California’s Los Angeles county has both the equivalent to RG per
https://dmh.lacounty.gov/our-services/public-guardian/faqs/
, and AOT per
https://dmh.lacounty.gov/our-services/countywide-services/aotla/
. Similar to Section 12, California’s involuntary transfer authorization (5150) does not allow the clinician to include nonadherence to recommended treatment or the equivalent to RG.
Massachusetts has much more work to do. The lives of the most mentally ill people would vastly improve if Mass adopts AOT.
Written by Lynn Nanos, author of the award-winning book Breakdown:A Clinician's Experience in a Broken System of Emergency Psychiatry with significant contributions from Ruth Johnston & Jeanne Allen Gore
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Collaborative Problem Solving
Heather Johnson, Think:Kids trainer, presented Tier 2 training to a rapt audience of teachers and others primarily from the Mashpee, Barnstable and Monomoy school districts. This is the final training sponsored by a grant from The Peter C. and Elizabeth C. Tower Foundation. We are grateful to the Tower Foundation, to Dr. Stuart Ablon, Director of the Think:Kids Project at MGH and to the hundreds of teachers, administrators, parents and others who have embraced this new paradigm of dealing with challenging children: "Kids
will
if they
can."
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NEW NAMI ON NANTUCKET PHONE #:
508-280-8777
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On November 13, I gratefully accepted a grant awarded by the Community Healthy Initiative/Nantucket Cottage Hospital on behalf on NAMI Cape Cod & the Islands on Nantucket. With this grant we plan to continue our campaign for mental wellness on Nantucket through 2020.
In my brief acceptance speech, I spoke of normalizing the conversation about mental health. As part of our continued advertising, an anti -stigma message will be incorporated. We will be calling for a continuum of care for everyone by promoting the services that we do have on the island. We will continue to market the William James Help Line which NAMI on Nantucket is sponsoring for the second year as an islander’s resource in seeking mental health services.
The concept of integrated health care (the inclusion of mental health in primary health care) from pediatrics to geriatrics will also be a focal point. Mental health issues are not due to a moral failing. They are illnesses, like other illnesses such as diabetes or cancer. One in four adults in this country is experiencing a mental health issue at any given time. We need to provide mental health services at the same level as we provide other health services. Our well-being depends on it.
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I
’m so excited to share that our Peer Outreach Group has already met twice at the school. We had a great turnout, about 20 students. In November we focused on Depression and SAD. We talked about how we can all make an impact to cure stigma, and the students had some great ideas. We hung posters around the school, and placed rack cards in various locations with tips to beat winter depression, as well as business-size cards with the crisis text number: 741-741.
We held our semi-annual NAMI MV meeting on Monday, November 11. Anyone in the community was invited to attend. After reviewing the wonderful year we’d had to date, we discussed the issues of greatest concern to Island residents: A comprehensive resource list of therapists and programs off Island, preferably people and places Islanders have used; An Island-based Family-to-Family “sharing” reference so people can connect with someone who has, or is, going through a similar situation; Island 24-hour Help Line; Additional Support Groups, and to alter the dates when the first Sunday and second Tuesday fall in the same week; more Family-to-Family and Support Group Facilitators; and, of course, more therapists and psychiatrists.
We also discussed activities and events and for 2020. I can’t believe I’m typing this, but we now have our first 2020 event on the books. We’ll be hosting a Dine-to-Donate lunch and dinner at Off Shore Ale on Thursday, January 9. We will also hold a small silent auction throughout the day. If you have any auction items to donate, please let me know.
I hope your holiday weekend is stuffed with blessings.
Happy Thanksgiving, Lisa
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Whatever you're going through, we're here to help.
Get free help now: Text CONNECT to 741741
Follow these 3 easy steps to reach one of our Crisis Counselors:
1)Text CONNECT to 741741 from anywhere in the USA, anytime, about any type of crisis.
2) A live, trained Crisis Counselor receives the text and lets you know that they are here to listen.
3) The volunteer Crisis Counselor will help you move from a hot moment to a cool moment.
Who We Are
Crisis Text Line is free, 24/7 support for those in crisis, connecting people in crisis to trained Crisis Counselors. Our first priority is helping people move from a hot moment to a cool calm, guiding you to create a plan to stay safe and healthy. YOU = our priority.
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Education and Support News
- The next Family to Family will begin in Wellfleet on Wednesday, Jan. 8, 2020, 6:00 – 8:30 p.m. Thank you Richard and Scotti for facilitating this winter.
- We are in the planning stages for a Family to Family offering in Harwich and on Martha’s Vineyard in the Spring.
- Family to Family is completing in Falmouth next week. Thank you Steve and Deb for facilitating this program.
- The Harwich Support Group has changed their meeting time. They continue to meet at St. Peter’s Church, 310 Rt 137, but now meet 6:00 – 7:00 p.m. on the first Thursday of each month (effective October 3rd).
- The Sandwich Support Group has changed their meeting time. They continue to meet at Spaulding Rehabilitation, 311 Service Road, but now meet 6:00 – 7:00 p.m. on the second Tuesday of each month (effective December 10th).
- The Falmouth Support Group that meets on the 4th Monday of the month, will not be meeting in December due to the Christmas holiday.
- Support group for parents of school-aged children through college is now meeting at the Gus Canty Center in Falmouth on the 1st Thursday of the month at 7:30 p.m. For information about this group, email Mary at marynewlim@gmail.com
- Support network for parents of children diagnosed with schizophrenia. For information about participating, email Cliff at cliff.jazzdog@gmail.com
To register for the upcoming Wellfleet Family to Family course, or be put on a list to be notified about another offering in the future, call or email Kim Lemmon, Director of Family Programs. 508-778-4277 or
klemmon@namicapecod.org
At this time of Thanksgiving, NAMI Cape Cod & Islands is particularly thankful for all of the dedicated people who volunteer their time and energy to support and educate our community. We honor the Family to Family facilitators, Support Group facilitators, individuals with a lived experience who will share their personal story to help another, and our dedicated event volunteers - - Thank You All, and Best Wishes for a Peaceful Thanksgiving holiday!!
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RESEARCH WEEKLY: November Research Roundup
DATAPOINT of the month
Only three states are at parity for payments to providers for mental healthcare compared to treatments for physical health conditions. It has been more than 10 years since the passage of the Mental Health Parity and Addiction Equity Act, which was a federal law passed in 2008 that requires equal coverage of mental health and substance use treatment options to that of physical health treatments. Yet, revealed by a
report
from Milliman that was released last week, only three states are at parity in provider payments for mental health office visits compared to primary care office visits. In fact, for 11 states, provider payments for mental healthcare are more than 50% lower than in primary care.
Mobile phones and serious mental illness.
Mobile phone applications are increasingly being used for healthcare, including being used for medication reminders and relaying real-time information on health indicators to clinicians such as an individual's blood pressure or heart rate. In addition, as we have written about
previously
, mental healthcare applications have been developed and shown to improve outcomes for people with schizophrenia. New research published this month in Psychiatric Services indicates that most patients (86%) with serious mental illness own and utilize a mobile phone. However, only 60% of these patients had a smart phone that had web or data capabilities. The authors conclude that the results indicate that mobile phone interventions for people with serious mental illness is feasible. However, caution must be taken when tailoring these interventions in order to ensure all people with serious mental illness, not just those with smartphones, receive quality care.
Substance-induced psychosis conversion to schizophrenia.
Substance-induced psychosis is when an individual develops symptoms of psychosis, such as hallucinations and delusions, as a result of substance use. Although the
vast-majority
of individuals who use substances never experience substance-induced psychosis, a percentage of those that do have an increased risk for developing schizophrenia. A recently published meta-analysis, a research method that combines all published research on a given topic, attempted to determine what factors may influence the conversion of substance-induced psychosis to schizophrenia.
The authors found that about 25% of individuals with substance-induced psychosis later develop schizophrenia. The type of substance was the largest predictor of this conversion, with cannabis having the highest risk, followed by hallucinogens and amphetamines. The authors conclude that because of the high-risk of conversion from substance-induced psychosis to schizophrenia, especially with cannabis, an assertive psychiatric intervention to individuals at risk is warranted.
Medicaid coverage gaps in schizophrenia
Many individuals with schizophrenia are insured by Medicaid. In fact, schizophrenia is 12 times more prevalent in the Medicaid-insured population than those with private insurance. However, in many states Medicaid is discontinued if an individual is incarcerated, even if it is for a short-jail stay and without a criminal conviction. It can then take months with tedious paperwork to be reinstated. In an analysis of Medicaid data for people with schizophrenia, a recently published article found that a longer coverage gap is associated with an increase in inpatient hospitalization and emergency department visits compared to those with shorter or no Medicaid coverage gaps. The study authors conclude that polices to help quickly facilitate Medicaid reinstatement after incarceration for patients with schizophrenia are needed to reduce costs and improve outcomes.
Elizabeth Sinclair Hancq
Director of Research
Treatment Advocacy Center
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.
Research Roundup is a monthly public service of the Office of Research and Public Affairs. Each edition describes a striking new data point about serious mental illness and summarizes recently published research reports or developments.
The Treatment Advocacy Center does not solicit or accept funds from pharmaceutical companies.
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Patient and Family Schizophrenia Education Day: Advances in Integrated Community Care for People with Serious
On Saturday, November 9
th
, 2019 the Department of Psychiatry at Massachusetts General Hospital conducted its annual Patient and Family Schizophrenia Educational Day. A small group of caregivers from Cape Cod attended the sessions. The program’s theme for 2019 was “
Advances in Integrated Community Care for People with Serious Mental Illness
.” The day was a chance to get annual updates on latest research and treatments in Schizophrenia Spectrum Disorders, while networking with clinical experts, other caregivers and those living with the experience.
Morning sessions included research and progress on: “
Community Psychiatry: Progress and Challenges
,” and “
Early Detection of Psychosis in your Neighborhood, School and Doctor’s Office
,” which provided information on the MGH Resilience Program aimed at increasing relationship to self and emotions and relationship to others, for at risk youth. It will be interesting to see if the workshops become available outside of the MGH program and if it can also be adapted to provide support for caregivers.
In the afternoon there was a panel discussion with four remarkable people with lived experience of mental health challenges, who provided insights into their early stages of illness and their recovery path, and the critical role that ongoing support and integrated community care played in their progress of recovery.
The final session covered the question of “
Should I Go to the Gym Today?
” This discussed the importance of exercise as a valuable part of recovery and well-being, and the impact it can have on improving mood and cardiorespiratory fitness, and subsequently quality of life.
More information about all educational programs offered by MGH can be found at the Patient & Family Resource Center here:
www.mghpatientfamily.org
written by Cliff Calderwood
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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.
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
http://smile.amazon.com
i
n your internet browser. On your first visit to AmazonSmile, you will be prompted to select a charitable organization . Select NAMI Cape Cod Inc. It costs you nothing, but provides funds for NAMI CC&I.
Thank You!
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