2014 NAMI National Convention

The 2014 NAMI National Convention was held in our Washington, DC this year! Two of our members attended and returned with a wealth of information.
You can also read about the Convention at NAMI.org.
2014 NAMI National Convention notes – by Jean Millkey:

Major Movie Preview:   Art and Craft:

NAMI members had the opportunity to screen this documentary about Mark Landis, perhaps the most prolific art forger in the U.S., never asking for money but donating the counterfeits free of charge because, as he explains, it makes him feel appreciated.  Mark was diagnosed with schizophrenia at an early age. This movie respectfully explores Mark’s living with mental illness and his desire to be part of a community. A panel discussion followed, with Mark and the directors of the movie. The movie will be shown in select theaters beginning in mid-September.

Education Programs for Youth:

This was presented by Teri Brister and Holly Swick, summarizing NAMI’s signature programs related to youth:

*NAMI Basics –  a 6-week class for parents and caregivers of children and   adolescents with mental illnesses

*Parents and Teachers as Allies – being updated,

*Ending the Silence – adopted by NAMI National in 2013

Much of the session was sharing ideas, especially re potential audiences for PTA, including librarians, school nurses, student teachers, librarians

and parents.   Additional discussion focused on how to market the courses such as using words like “challenging behavior” and “my kids are driving me crazy” rather than mental illness.

Using DBT’s Core Mindfulness Skills to Resolve Conflict:

Shari Manning gave a delightful and insightful presentation on how mindfulness, a core Dialectical Behavior Therapy skill, is really a general life skill with universal relevance.  Mindfulness is “recognizing our own experience, and recognizing others’ experience, without adding on.”  Add-ons are assumptions or interpretations or judgments about what others are communicating, rather than simply accepting what they are communicating. 90% of the time our interpretations of what others are thinking are wrong. Judgments increase emotion and inhibit problem-solving.

Mindfulness involves:

  1. Observing: accurately gathering information without thinking about or analyzing. No descriptions, just observing what you hear/feel/see.
  2. Describing what you observed: without describing what you didn’t observe, and without interpreting, inferring, or assuming (the adding on) which can escalate emotions
  3. Validation:  finding the wisdom or truth in what is communicated. Genuine validation decreases the emotional arousal, and communicates compassion and understanding which makes problem solving easier.

(The NEA-BPD Family Connections course teaches these skills.)

Building Strategic Alliances to Engage Youth and Families:

Gary Blau of SAMHSA, Darcy Gruttadaro of NAMI’s Childe and Adolescent Action Center, and Teri Brister of NAMI presented resources focusing on engaging youth and families.

Facts shared:

* 20% of children and adolescents have an emotional, behavioral or mental            disorder;  40.3% of the 20% have more than one of the three.

* From 2001  to 2011, this % rose 16%

* 75% don’t receive treatment

* Suicide is the 2nd most frequent cause of death (used to be 3rd)

* 4400 suicides by young people each year in the U.S.

Resources briefly discussed include:

Agency for Healthcare Regional Quality

SOC – Systems of Care – networks, family driven and youth guided care

Youth MOVE   at   youthmovenational.org   Motivating Others through the Voice of Experience,  a youth to youth program utilized in Ohio and Utah NAMI affiliates

SAMHSA CMS offers a bulletin on coverage for informational health services –    www.samhsa.gov/children

turningpointct.org  is a program used in Connecticut

a compendium for youth programs is on the NAMI website

Darcy shared a brand new program funded with a grant from Carnegie and created to give Boys and Girls Clubs and other adolescent groups a tool kit to talk about mental health.  The program  Say It Out Loud will be on a flash drive with 20 minutes of preparation for the adult leader, and a 5 minute presentation for youth to begin the discussion.  The flash drives will be ready in a few weeks. The website,  www.OKtotalk.org  is under development.

NAMI is beginning to put the signature programs on-line for easier accessibility and wider distribution  – Basics is next.

New Research on BPD:

Both speakers, Blaise Aguirre at McLean and Ale Miller at Albert Einstein College of Medicine, focused on adolescent research. Facts shared:

1.8% of the population has BPD

Suicides – 40-65% have personality disorders.

8-10% of people with BPD commit suicide, 75% attempt suicide

 Up to 80% of people with BPD diagnosed self injure

 BPD is 60% genetic,  40% environmental

Good news – some school systems in NY are recognizing the importance of teaching DBT (life) skills early on, and workbooks are being written to aid schools in teaching these skills, with the expectation that children who learn these skills will be more resilient and better able to handle the environmental factors that lead to BPD. (A few schools in the greater Atlanta area are also adding these skills to their curriculum.)

I’m Not Crazy:

The Bipolar Babes session offered the viewing of a panel of Atlanta area women of color talking openly about their illnesses. The presentation – the movie and the in-person comments of the women in the movie, were very well received. Susan Ryerson plans to make a follow-up video.

Exhibitor re Housing:

Project Transition – www.projecttransition.com      Works with adults with mental illness to live better lives by providing unique residential communities located in attractive suburban apartment complexes throughout southeastern Pennsylvania. These apartment-based programs foster recovery, independence and reintegration, at a reasonable cost because the program is subsidized by community org/service providers.  Project Transition staff are eager to help other communities with similar programs.

2014 NAMI National Convention notes – by Dot Keith:

Approximately 1700 people were in attendance for NAMI’s 35th annual conference September 3-6, 2014. This was my first experience staying for the entire conference, so I will try to cover only some of the highlights.

Wednesday, September 3

Dr. Ken Duckworth highlighted some of the technology changes occurring that are designed to help people better self manage their symptoms using mobile apps.

Pennsylvania Congress Representative Tim Murphy gave a legislative briefing Wednesday evening with an overview of the history of mental illness in the U.S. and where it is today. Pointers were given to audience members who planned to visit their congressional representatives Thursday morning. Rep. Murphy told the audience that the most powerful message they can leave behind in their visit to congressional offices is to educate their representative or a staff member by telling their story from their personal experience.

Thursday, September 4

Patrick Kennedy, Creigh Dees, Demi Lavato, and Mary Giliberti made presentations prior to attendees boarding buses for Capitol Hill. Lei Ellingson, Bonnie and Jim Moore and I visited Capitol Hill together under the leadership of Ron Honberg, J.D., NAMI National Director of Policy and Legal Affairs. NAMI fact sheets were handed out for participants to give to their representatives. Since Congress was not in session, we talked with the Legislative Correspondent in Republican Congressman Tom Grave’s office and to the Legislative Assistant and Scheduler in Republican Congressman Austin Scott’s office. We also stopped in Phil Gingrey’s office. Senator Johnnie Isakson’s office was closed. Due to time constraints, we elected not to visit the offices of representatives who had indicated their support.

Later in the day, I met with the Georgia State Caucus to listen to candidates for the NAMI National Board of Directors. Jean Millkey arrived in the afternoon and joined the Georgia delegates for dinner at the hotel.

Convention

At 7:15pm, NEA-BPD Family Connections leaders gathered together. This was an opportunity for leaders across the country to network. Sonia Neale, a visitor from Perth, West Australia joined us. Sonia is a writer who won a grant to visit the U.S. and Europe over a 2-month period to learn more about borderline personality disorder programs in these countries. She will be in Atlanta on October 15, and will meet with Atlanta Family Connections leaders at that time.

Friday, September 5

Open Mic With the NAMI Board of Directors

This meeting was an opportunity for people attending the conference to meet and ask questions of the NAMI Board of Directors. Some of the topics brought up:

  • National’s sharing of donations with local affiliates
  • The word “stigma, ” projects negative connotations. Stop using it. Mental illness should be thought of as a civil rights and health discrimination concern.
  • NAMI affiliates should have an office, a “physical blueprint.” This way, people can see a local NAMI affiliate is a real organization

Earning A Living: Work, Mental Illness and Recovery– CEU Special Topics

– The Rehab Act requires contractors doing business with the Federal Government to hire a certain percentage of people with disabilities.

– Andy Wilson, Executive Director of the Carriage House in NY discussed the Clubhouse International Model.

Workshops

Getting Off the Emotional Roller Coaster:

Moderator Carol Caruso MCAT, Executive Director, NAMI of Pennsylvania Montgomery County, Langsdale, PA

– Under discussion was a 10-week family workshop developed at a Mental Health America affiliate in Philadelphia, PA. See: http://www.mhasp.org/about-tec/ The course material mentioned in this presentation sounds very similar to the NEA-BPD Family Connections course material we teach in Atlanta’s Family Connections course. The biggest difference I saw is the Atlanta Family Connections course is free, sponsored by NAMI and the Pennsylvania course cost $300 for one person to attend and $550 for 2. Their course is a subsided workshop by a city department of behavioral health with a waiting list of 60 people

I’m Not Crazy

Atlanta’s Bi-Polar Babes presented this workshop. The room was filled to capacity and the presentation well received. NAMI Northside Atlanta sponsored this group to present at the National Conference.

Borderline Personality Disorder

Presenter: Blaise Aguirre, MD, Asst. Professor of Psychiatry, McLean Hospital and Harvard Medical School, Boston. – The discussion was about early intervention for BPD in adolescence. DBT will be coming out next year in some schools.

Shared Decision Making at Dartmouth Hitchcock Hospital

Common Ground, a web application was developed to be used in the treatment settings by people living with mental illness. The app:

– can empower people living with mental illness

– is designed for and by people in recovery

– allows the patient’s power statement to connect the doctor’s statement with the individual’s personal goal

– helps patients prepare before their appointment

– can give a full view of the patient’s story to their doctor and team

– amplifies the voice of the individual

– can track early warning signs

– can share concerns

– provides decision support

– allows the patient to see month-to-month how they are doing

– is a way for the patient to advocate for themselves

– allows doctors to hear the patient’s voice and stories in a holistic way

Saturday 9/6/14

Dr. Thomas Insel, Executive Director NIMH – Moderator: Dr. Ken Duckworth

Dr. Tom Insel’s comments:

– “I’ve heard that it’s easier to get into Harvard Medical School than to get a bed in a psychiatric hospital.”

– “The brain is the most complex organ in the human body and the least understood. Where would cardiology be if we called all heart problems as chest pain disorders?”

– “Brain disorders are the largest disability in the U.S.”

– “There has been a 100% increase in anti-depressant and anti-psychotic medications, but the numbers do not reflect a reduction in mental illness”

– ”Depression can be treated, but it takes compliance.”

– “Treatment in 2014 is fragmented, mostly focused on symptom control, access is limited and adherence is poor.”

– Dr. Insel recommended to the audience that they visit The Genome Evolution exhibit at the Smithsonian’s Museum of Natural History while in Washington. For additional information, see:

http://www.mnh.si.edu/exhibits/genome/

http://web.ornl.gov/sci/techresources/Human_Genome/index.shtml

http://unlockinglifescode.org/

– The White House Brain Initiative is being referred to as the next great American project where science and technology will be exploring inner space instead of outer space. This initiative comes under the Office of Science and Technology and a cabinet level department.

— For more specific information, see the 9/30/14 White House Conference on the Brain Initiative presentation on YouTube at: http://www.youtube.com/watch?v=6MEGFFlMHpQ

NAMI National Executive Director Mary Giliberti spoke on the NAMI movement, organization, vision and business. She commented on:

– the adaptation of the NAMI F2F course for returning veteran families and a NAMI Homefront app

– advocacy moving health reform, parity, health quality outcome, underserved populations, youth education and strategic partnerships

– AKA sorority was founded on the Howard University campus in 1908. This sorority has selected NAMI as their national philanthropy.

This was a week filled with learning, participating and networking opportunities. Thank you for providing me with the opportunity to represent NAMI Northside Atlanta at the 2014 convention!
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