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In New Hampshire, mental health care is abysmally poor. The state uses an out of date, regional agency approach for those not rich enough to afford the private psychiatrists, counselors, and clinics that has wide disparities in the quality of care, and frequent non compliance with parts of the Health Care Reform Act. It is apparent everywhere, but the last place I expected to find so many examples of what is wrong was the OFCA Advocate Newsletter. Silly me.
At one time, the #1 advocate for mental health consumers (The Office of Consumer and Family Affairs) was the watchdog agency headed by a director not afraid to show teeth and bite both a BBH wonk’s behind and a Representative’s elbow to get things changed. The newsletter usually had at least one photo or story of our Advocate fighting for us, even is the battle was lost to Tea Party fanatics.
Now, the OFCA has been reduced to an emasculated shell that has staff getting certifications in suicide prevention instead of lessons on how to hold press conferences that force change within the Bureau of Behavioral Health and the legislature to benefit and protect consumers.
The Winter 2015-2016 Newsletter, for example, disclosed that the mental_health_consumer_before_freedom4application for the Federal block grant that funds the continuation of the broken agency system that deprives consumers of even the choice of who will provide their services had been completed.
Who led this massive effort? That yet again is going to chain mental health consumers to bad care, no choice? Yeah, that guy was actually (as State Planner), the director of the OFCA. Yep the guy who is supposed to be OUR Advocate – kicking and screaming about the dysfunctional system and pulling both politicos and state-employee-for-life-crats together to replace the system. Guess what? The broken regional agency system not only is staying, but there isn’t even any pretense of open bidding for the contracts.  Great job OFCA. There’s only thousands of us waiting for you to change to a working system, one that can at least get a passing grade from NAMI.
Hold up. Understand: Nami-NH was the ONLY other national backed advocacy organization for Mental Health Consumers in New Hampshire.  I would have posted a link to show you just how bad our grade is at NAMI, but the newest one I could find was 2012.  Instead of an easy to read report card, they have this…mess.)
Personally, if you are going to hold your one day biggest fundraiser walkathon in the empty Sunday Afternoon side streets in neighborhoods near the state psychiatric hospital, well…how do you cause change if you aren’t causing some serious traffic jams?  They have also been decimated by tax cuts and 1% rich people not donating big checks like all the other charities.  Here is just a glimpse of some of the NAMI-NH programs that no longer exist:
NAMI Affiliate What Happened Where
NAMI Berlin
NAMI Berlin has been dissolved; please contact NAMI NH at the phone or email listed above.
NAMI Concord
Concord area is still open.
NAMI Greater Salem
NAMI Greater Salem Affiliate has been dissolved; please contact NAMI NH at the phone or email listed
NAMI Manchester
Manchester & Goffstown can still get help, although there is only one bus and it has a lousy schedule.
NAMI Manchester C.A.N.
NAMI Manchester CAN has been dissolved -the only consumer run group of it’s kind NAMI-NH had.
NAMI Monadnock
Keene/Peterborough&Sunapee area
NAMI Nashua
Nashua & Merrimack area
NAMI North Country Support Group
Littleton/Franconia &Twin Mountain area
NAMI Seacoast
Portsmouth& Kittery Point area
NAMI Tri-Cities (NH)
Rochester, Somersworth, Dover
NAMI Upper Valley
Lebanon area (NH and VT)
By the way, have you ever seen a map of NH? Looks small right? Try getting to a NAMI affiliate meeting when you need support and the nearest one is in Twin Mountain and you are in Lincoln. HOURS of driving, because Mental Health Consumers and their families have lots of time and money to drive for hours to get help and support.
Thus ends the digression on why the #2 Advocate for mental health consumers in New Hampshire isn’t making any noise about the #1 Advocate becoming the staff that wrote us into another year of abject misery.  If enough of us die from the poor care, we will have an Advocate then: The Funeral Home Association needs zip lock baggies for our ashes.
 None of the identified goals for the next 5 years address the discrepancy between CFI-Chronic Illness and CFI-Mental Health. CFI-Chronic Illness does suffer from a horrific shortage of home care workers and devastating cuts, but it at least preserves the consumer’s right to choose which agency does case management, what nurse comes into their home, and what doctors and therapists the person chooses to see.
CFI-Mental Health on the other hand, strips almost all choice from consumers, and literally creates a reality that moving 20 minutes up the road can cost you not only your psychiatric providers, but can cause your diagnosis to be arbitrarily changed, can cause you to lose services you previously received, and even remove you from being approved for CFI-mental health services completely. If you haven’t gotten the message yet, here you go: You mental health consumers are the peasants. You just stay put, suck up the bad care, and turn down that job, apartment, or chance to live closer to the grandchildren. We OWN you, we decide what you do or do not get, and as one employee of an agency said “Each agency is its own silo”. As in missiles, not storage of food.
psychiatristwithpatient
“Oh, no, I’m not a psychiatrist. I’m working on my master’s in Social Work. Only 3 more years!  You don’t look suicidal to me.”

None of the 5 goals included any plan to recruit more psychiatrists and psychiatric Nurse Practitioners to the state.. Even though we are facing a critical shortage, and happen to have a state that is still cool enough that the mayor of Rochester convinced TWO companies and 800 workers to come here and build turbines. Nobody could set aside a couple hundred bucks to send that guy, TJ JEAN, to recruit psychiatrists in BOSTON?!?

None of the goals included creation of a system similar to the used in the legal profession that unless employed in Community Mental Health Care, all psychiatrists, psychologists, psychiatric nurses be required to donate a fixed amount of pro Bono work per year to those who cannot afford to pay for it.

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“Sorry, I only protect the right to life of balls of cells in female abdomens, not mental health ..uhhh..people.”

Also left out of the 5 year goals was compliance with creating the required number of community homes for consumers as mandated in the Amanda D settlement, where the state violated the rights of an entire class of mental health consumers for close to 10 years just so they could “be a low tax state” to the Mitt Romneys and the Dean Kamens. Yes, Robotics in high school is great….but we have people starving, homeless, and dying here. Mitt, Dean: Pay more taxes!

There was no specific goal to correct the survey and data collection

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“Look, never mind reality. Just trust our flawed data”
methodologies that have important budget decisions based solely on how many consumers hit the 1 in 200 chance of getting a bed at the New Hampshire state hospital twice. (The reality is a person with an inpatient stay may get discharged from the State Hospital, then 20 days later readmitted to a bed in a regular hospital. The rate of readmits doesn’t count this person unless they go back to the State Hospital. New Hampshire loves to gamble, but the odds of pulling this off are so astronomically high, it is something consumers brag about because it is so rare.)
Hundreds of NH consumers go through the agony of dealing with a psychiatric emergency handcuffed to a bed in the local ER, with barely getting food and use of a toilet due to lack of psych beds, but one of the goals identified is to reduce psychiatric hospitalizations so that even more of the state’s rising murder, suicide, and misery can be seen in our news and on TV, while the rest of us mental health consumers suffer and die silently.
flashbacks_blackBy this point, the dog was offering to line his “potty” with the newsletter, but I read on, ignoring the TMJ pain in my jaw.
The final insult? An op-ed piece by a PhD on the idea that we as a state should reconsider the definition of Severe Mental Illness to focus on more on “positive functioning”.
In other words, instead of just saying, for example, that I have 2 brain illnesses, Multiple Sclerosis and Post Traumatic Stress Disorder, one a neurological illness and the other a psychiatric illness, Dr. Mandersch would see a world where I have a neurological illness and that I am “working” on improving my mental well-being!
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Did you know some folks locked up like this had Fibromyalgia? Cerebral Palsy? Were Just Transgender? NO, The doctor is not always right, and the office workers in Concord are often misinformed, or just flat out wrong.
This is pure bull. I have MS, and I chose my neurologist, we chose my treatments, and when I show up in the ER, no one is pussyfooting around saying I was “struggling with maintaining my physical well being”. It should be exactly the same for mental illness.  There is no way in hell mental health consumers are going to go back to having “feel good”, “let’s just look at the positive side” quasi-care.

If I have a MS seizure, get me in a hospital, a neurologist, and an IV with an anti-epileptic, stat. If I have para-suicidal ideation or a flashback, get me in the hospital, a psychiatrist, and an IV with Xanax, stat. Stop acting like Severe Metabolic Illness is OK to say but Severe Mental Illness is not.

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Hell, NO! We are NEVER going back to this kind of care – with cloth straps or with one hour a week CBT “therapy” alone again.
Our mothers and grandmothers marched in too many marches, walked too many congressional halls to make it “OK” to try and downgrade one kind of broken brain to a “here, let’s talk” while the other gets proper care from properly trained and paid professionals, with real treatment, adaptive equipment, and support services.
Medicaid parity is coming. Ron can take his fuzzy wuzzy “think yourself well” and go put it where it belongs: AFTER proper recognition that these are REAL diseases and illnesses, and those of us with them deserve real doctors with real choices and as much respect, care, and compassion as every single chick wearing a pink ribbon bandana on her bald head.
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Think It Can’t Happen Here? How do you think it feels when you get dumped with bad or no care just by changing zip codes?

Bureau of Behavioral Health and OCFA:

Epic #FAIL. Start over.

It is time for OFCA to stop being the cute toy poodle in the Tiara trying to charm people and start channeling their inner chihuahua and start biting some ankles and getting the real priorities addressed. Consumer choice, just like in CFI-CI. Real change, real treatment, and calling a spade a spade, not a washed down hippie dippy “rough patch”.

Brenda Ann Eckels, aMGC, Strafford County, NH #mentalillnessfeelslike #MentalHealthAwarenessMonth
#mentalillness    #stigmafree    #povertyspeaks
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