The Streets Are Not A Home

The Homeless

1/3 or 200,000 of the 600,000 homeless who live on the street are mental ill.  Many benefited by very strong family support systems and insurance that offered some availability to services before they became homeless.  Those now living on the streets weren't able to care for themselves before they became homeless, how are they expected to now?  

Are the streets the answer?  Is that acceptable to our society?  No medication leads to self-medication which we know doesn't work very well. 

Street Outreach

Some of the most amazing programs in the country offer services to those on the street.  These volunteers, social workers, doctor and nurses patrol the streets looking for those they can help, they give them a meal, their meds and check them over, they look in their eyes and they talk with them..

Shelters are not the answer. We know that too. 

News Ratings at our loved ones expense.  No solutions offered.  Shame on them.

The homeless who are mentally ill and live in big cities get weekly news coverage for crimes they commit.  The public becomes afraid, again, of every form of mental illness which only adds to the stigma, preventing people from asking for help while the media gets a daily ratings bump.  Shame on them.

We, as caregivers, are more often than not blamed when tragedy strikes.  With all the media coverage we're often left with soundbites and the perpetuation of stigma yet no real solutions offered.  The questions they want to focus on are: Where is the family?  How could they let this happen?  What kind of people are they?  They judge, then they look the other way.  They think we have a say with our loved ones and the broken system we and they navigate…

Critical Intervention Training

(CIT) is vitally important, as a first step.  It will take years for us to fix the broken system and until then police are our first line.

A CIT trained office  told me the quagmire officers face. 'When they approach a call they are to get control of the scene and the perp as soon as possible.  They expect compliance, anything that isn't compliance is defiance.  So failing arms, talking, noises, tics, running, screaming, an inability to stop moving...crying and or acting out escalate the issue and the stress of all involved. ' Never good.

When I told him my story and how my loved one wants to be looked in the eye, told it will be ok, that you are there to help…

The officer said 'but we're not trained to do that…' in the academy.

I beleive when you know better you do better.  CIT training should be taught in every police academy because as another officer told me:

'We go on these calls and don't know what the hell to do and are as jacked as they are.  We don't know what to do?  Arrest them?  Send them to the hospital (which we often can't do) so the caregiver can get a respite and reorganize, get them to a shelter (if there is a bed) and often the caregiver gets mad at us for yelling at the person, arresting them or cuffing them.  What are we supposed to do??''

The Critical Intervention Training is such a fantastic community tool and deserves to be part of every police academy training in our country.  I'm impressed by each officer that I've met that is CIT trained.  

I'll leave you with a few links to consider as you look at the issues our society faces with respect to community based services, funding, CIT training and homelessness:  

Kelly Thomas. Homeless. Scizophrenic. Killed.

Please read Kelly Thomas' story.  Not the politics of it, just the story as a caregiver.  I'm haunted by this man and his father.  I want to meet this father and hold him.  He loved his son, his son's last words haunt me.  

link

http://www.cnn.com/2013/01/18/us/philadelphia-subway-attack/index.html?iphoneemail

http://www.psmag.com/blogs/news-blog/hospitals-save-money-with-homeless-outreach-3676/

Hospital Checklist being used by Dry Dock & CT Caregivers

Wallingford's Dry Dock Founder asked about my Hospital Checklist and how to use it after hearing me testify to the Public Health Committee two weeks ago.​  After testifying in Middletown in front of another Legislative Committee I met one of our new State Representatives, he's sharing it with several of his constituents who are faced with the same HIPPA issues many families do when they are 'taking their loved ones home'.   

I urge you to share, edit & use the checklist found here Hospital Checklist tab.

Handout for Fairfield SEPTA mtg 3.13.13

CT Legislative Bills to Watch * Contact your Legislators *  Let them know your position on the issues that matter to you & your loved ones.  If you don’t let them know, they can’t help you.  * 5 calls or emails are all that is needed to change a vote (edited)

What to write or say:

My Testimony can be found by clicking the following link ( advocacy tab above). Feel free to take the information that makes sense to you, add your name, the town you live in, whether you oppose or support the bill and either email or call your Legislator.  If you don’t use your voice for your loved one, nothing will change.  Your voice is important and matters.

What Are the BIG Bills being considered this session that affect you?

*857     STEP OR ‘FAIL-FIRST’ THERAPY        Oppose, Strongly

*169     AUSTISM SPECTRUM DISORDER INS COVERAGE         Support

6388    CONCERNING INTERMEDIATE CARE FACILITIES FOR INDIVIDUALS WITH INTELLECTUAL DISABILITIES.        Support

6546    PHYSICAL THERAPY COVERAGE (MY TESTIMONY WILL CENTER ON BEHAVIORAL AND MENTAL HEALTH SHOULD BE COVERED IF THIS IS.)     Oppose as written, support with Mental Behavioral Health Therapies Included

*6517   PARITY COMPLIANCE & OVERSIGHT.       Support

*6001   RESIDENTIAL COMMUNITIES FOR YOUNG ADULTS WITH DEVELOPMENTAL DISABILITIES.       Support

1023    NON-PROFIT REVENUE RETENTION (pls READ TESTIMONY, VERY IMPORTANT BILL)       Support

262      REPORTING OF PATIENTS WHO POSE A RISK TO SELF OR OTHERS  Oppose

**374   IN SCHOOL BEHAVIORAL HEALTH SCREENINGS       Oppose- Strongly as written and probably with changes.

1029    HEALTH INSURANCE COVERAGE FOR AUTISM SPECTRUM DISORDERS      Support

6612    MENTAL HEALTH PARITY & OVERSIGHT       Support, Strongly

1087    RESPITE (SHOULD INCLUDE DEVELOPMENTAL, BEHAVIORAL & MENTAL HEALTH)       Oppose as written, Support with changes to include M/BH

Legislator Contact Info:

Senator John McKinney                         John.mcKinney@cga.ct.gov

Representative Tony Hwang                  Tony@tonyhwang.com   

Representative Brenda Kupchick            Brenda.Kupchick@cga.ct.gov

Representative Kim Fawcett                    Kim.Fawcett@cga.ct.gov

How to find what Bills are being heard that week or more info on the ones listed?

Go to www.cga.ct.gov

Type in the Bill numbers at the top of the page for the full bill, more info, etc.

Why Bother? Am I heard?

Remember even if a hearing happened the vote hasn’t.  Your legislators need to hear from you.

The gun lobby is flooding email boxes at the Legislature. Mental and Behavioral Health Advocates ARE NOT!  The feeling is that all is fine so what needs to be fixed. The reality is that as caregivers we have NO TIME. This is my way of making it as easy as possible for you to be heard.

Please visit www.turtles-lemonade.com for:

Hospital Checklist:  For when your loved one is released.  Now being used by several non-profits, Legislators and caregivers throughout the state.

Testimony: To get comfortable with the process.

Links: To important info and agencies.

Daily Blogs: On topics that affect our loved ones and us as caregivers.

Support: Through the information provided, group and individual work.

~​

​Handout #2  Turtles & Lemonade, Legislative Issues and what they mean to us this year.

What is Parity?

If you don’t accept the concept of insurance parity, you accept the premise that a person with stage 4 cancer whether 13 or 65, in excruciating pain goes to an emergency room to get care; and as soon as their pain is managed, whether that is in 4 hours, or after three days when the insurance company stops paying, pain free or not, they’re sent home with a prescription only?  No follow-up, no support, nothing, until the next time they are in so much pain they need to come back.  That could be hours, days, weeks, or months later. But make no mistake about it, until that person passes away they will be back and they will be in the ER with crisis level pain and all of the associated costs; real costs by insurance, family, personal, employment loss, etc.

You would probably say that this is unacceptable for any reasonable person.

Now substitute mental illness for cancer in the above scenario. That is the EXACT practice that we have in this country.  I’m testifying to that fact today.   

That is not parity.  That isn’t managed care. It is cruelty and certainly not what we expect to get when paying our premiums.

We would never accept a medications-only approach for our loved ones with cancer, without exploring the options and services available for the most successful outcome and quality of life available to them.

Insurance companies pressure the medical community to ignore proven successful best practices for quality of life and recovery when it comes to mental health services and maintenance.

Mental Illness/Behavioral Health Issues are no different from cancer, or heart disease or diabetes.  Society may not think that, or like that, but that is a fact.

Many caregivers feel that the goal of insurance companies with respect to Behavioral/Mental Health are to give them a prescription to mask the problem or manage symptoms, send them on their way, and hope they don’t return which means they’ve passed due to negligent care.  That is the exact opposite of our goal and our loved one’s goal. It is our feeling that the Insurance Industry’s position is that by using this model our loved ones sooner or later will no longer be a drain on their profits.  What other demographic would we, as a society, accept this for?

As with cancer, early detection and managed care work.  It is the most cost effective model for insurance companies, patients and society.

Enforce the insurance parity laws currently on the books in CT.  Begin true oversight.  Add substantial penalties and no loopholes.  Caregivers need to be able to trigger these penalties for our loved ones who are unable to for themselves.  If you chose to do nothing you need be content with the insurance companies wish for these services to ONLY be offered by the government.  Yet, remember that puts the burden for healthcare, support, housing, food, unemployment and SSI on to you.

We need these new oversight laws before the Legislature this session passed in order to put insurance companies on notice that they’re being watched and will be held accountable. We need teeth behind our parity laws with respect to behavior/mental health services. (CT OHA & Insurance Commission currently are where to report your issues).  Insurance companies have benefitted by the inability of those who suffer from chronic mental illness/severe developmental disabilities/behavioral issues to properly fill out insurance paperwork, advocate and be tenacious enough to break through their cumbersome system in order to access covered or available services and HIPPA laws which prevent caregivers from helping them.

We pay insurance premiums expecting to get what we pay for, yet rarely do when it comes to behavioral health.  Yet, if we don’t pay our premium we don’t get covered care.  Why are insurance companies that aren’t providing covered care still allowed to be serving the public that PAYS for their service?

Step-Therapy

When an insurance company changes a brand name med to a generic. The change is not by a Doctor. This saves the company money and has dire consequences when applied to any med that deals with the brain.  These meds are supposed to be prohibited from this practice.  That isn’t the case though.

Would this happen if insurance companies knew there was true oversight and more than a slap on their hand…if reported? Why are our CT non-profits held to a higher standard?

The true costs of providing proper mental health care coverage will decrease not increase insurance costs, reducing overall health care cost to all.  Providing proper coverage will also reduce the need and associated costs of emergency hospitalizations.

Great Resources

  • The Public Health Committee’s December 18, 2012 report.
  • The Connecticut Office of the Health Advocates January 5, 2013 report.
  • The 2003 Blue Ribbon Commission Report.

Heartened

This Legislative Session in Connecticut has been wonderfully heartening.​

All of our Legislators are listening and want to hear your voice.  Five calls can change a vote.  One story can change a committee's vote. ​

​The questions being asked are deep, purposeful and insightful.  

​Each day brings a new opportunity to open a mind and help all of our loved ones.  

Mental Illness is just a character flaw. Get over it. Man-up!

As our nation continues to debate Mental Health Services few are speaking in public about the perception that Mental illness is a character flaw.  Mental Illness' are serious chronic medical conditions, like diabetes and heart disease.  Is a diabetic a weak person that can't control their pancreas and its production of insulin? If you're born to a family that has a genetic disposition to create cholesterol resulting in heart disease are you too weak of mind to control your endocrine system?  To follow that logic a person who suffers from Mental Illness is too weak to control the chemicals and neurotransmitters in thier brain; the most unexplored organ in the body.  Why is there no parity of coverage and care?  What is parity of care when discussing Mental Health?

Mental illnesses are serious medical illnesses. They cannot be overcome through "will power" and are not related to a person's "character" or intelligence. Mental illness falls along a continuum of severity. Even though mental illness is widespread in the population, the main burden of illness is concentrated in a much smaller proportion-about 6 percent, or 1 in 17 Americans-who live with a serious mental illness. The National Institute of Mental Health reports that One in four adults-approximately 57.7 million Americans-experience a mental health disorder in a given year.
http://www.nami.org/template.cfm?section=about_mental_illness

When you know better do better.

List of Murders by People on Psych Meds.

The following was on Facebook with no credit or source. See below for blog my post.)

“What Drug Date Where Additional

School Shooting Prozac WITHDRAWAL 2008-02-15 Illinois ** 6 Dead: 15 Wounded: Perpetrator Was in Withdrawal from Med & Acting Erratically 
School Shooting Prozac Antidepressant 2005-03-24 Minnesota **10 Dead: 7 Wounded: Dosage Increased One Week before Rampage 
School Shooting Paxil [Seroxat] Antidepressant 2001-03-10 Pennsylvania **14 Year Old GIRL Shoots & Wounds Classmate at Catholic School 
School Shooting Zoloft Antidepressant & ADHD Med 2011-07-11 Alabama **14 Year Old Kills Fellow Middle School Student 
School Shooting Zoloft Antidepressant 1995-10-12 South Carolina **15 Year Old Shoots Two Teachers, Killing One: Then Kills Himself 
School Shooting Med For Depression 2009-03-13 Germany **16 Dead Including Shooter: Antidepressant Use: Shooter in Treatment For Depression 
School Hostage Situation Med For Depression 2010-12-15 France **17 Year Old with Sword Holds 20 Children & Teacher Hostage 
School Shooting Plot Med For Depression WITHDRAWAL 2008-08-28 Texas **18 Year Old Plots a Columbine School Attack 
School Shooting Anafranil Antidepressant 1988-05-20 Illinois **29 Year Old WOMAN Kills One Child: Wounds Five: Kills Self 
School Shooting Luvox/Zoloft Antidepressants 1999-04-20 Colorado **COLUMBINE: 15 Dead: 24 Wounded 
School Stabbings Antidepressants 2001-06-09 Japan **Eight Dead: 15 Wounded: Assailant Had Taken 10 Times his Normal Dose of Depression Med 
School Shooting Prozac Antidepressant WITHDRAWAL 1998-05-21 Oregon **Four Dead: Twenty Injured 
School Stabbing Med For Depression 2011-10-25 Washington **Girl, 15, Stabs Two Girls in School Restroom: 1 Is In Critical Condition 
School Shooting Antidepressant 2006-09-30 Colorado **Man Assaults Girls: Kills One & Self 
School Machete Attack Med for Depression 2001-09-26 Pennsylvania **Man Attacks 11 Children & 3 Teachers at Elementary School 
School Shooting Related Luvox 1993-07-23 Florida **Man Commits Murder During Clinical Trial for Luvox: Same Drug as in COLUMBINE: Never Reported 
School Hostage Situation Cymbalta Antidepressant WITHDRAWAL 2009-11-09 New York **Man With Gun Inside School Holds Principal Hostage 
School Shooting Antidepressants 1992-09-20 Texas **Man, Angry Over Daughter's Report Card, Shoots 14 Rounds inside Elementary School 
School Shooting SSRI 2010-02-19 Finland **On Sept. 23, 2008 a Finnish Student Shot & Killed 9 Students Before Killing Himself 
School Shooting Threat Med for Depression* 2004-10-19 New Jersey **Over-Medicated Teen Brings Loaded Handguns to School 
School Shooting Antidepressant? 2007-04-18 Virginia **Possible SSRI Use: 33 Dead at Virginia Tech 
School Shooting Antidepressant? 2002-01-17 Virginia **Possible SSRI Withdrawal Mania: 3 Dead at Law School 
School Incident/Bizarre Zoloft* 2010-08-22 Australia **School Counselor Exhibits Bizarre Behavior: Became Manic On Zoloft 
School/Assault Antidepressant 2009-11-04 California **School Custodian Assaults Student & Principal: Had Manic Reaction From Depression Med 
School Shooting Prozac Antidepressant 1992-01-30 Michigan **School Teacher Shoots & Kills His Superintendent at School 
School Shooting Threats Celexa Antidepressant 2010-01-25 Virginia **Senior in High School Theatens to Kill 4 Classmates: Facebook Involved: Bail Denied 
School Violence/Murder Antidepressants* 1998-05-04 New York **Sheriff's Deputy Shoots his Wife in an Elementary School 
School Knifing/Murder Meds For Depression & ADHD 2010-04-28 Massachusetts **Sixteen Year Old Kills 15 Year Old in High School Bathroom in Sept. 2009 
School Stabbing Wellbutrin 2006-12-04 Indiana **Stabbing by 17 Year Old At High School: Charged with Attempted Murder 
School Threat Antidepressants 2007-04-23 Mississippi **Student Arrested for Making School Threat Over Internet 
School Suspension Lexapro Antidepressant 2007-07-28 Arkansas **Student Has 11 Incidents with Police During his 16 Months on Lexapro 
School Shooting Antidepressant WITHDRAWAL 2007-11-07 Finland **Student Kills 8: Wounds 10: Kills Self: High School in Finland 
School Shooting Paxil [Seroxat] Antidepressant 2004-02-09 New York **Student Shoots Teacher in Leg at School 
School Threat Prozac Antidepressant 2008-01-25 Washington **Student Takes Loaded Shotgun & 3 Rifles to School Parking Lot: Plans Suicide 
School Shooting Plot Med For Depression 1998-12-01 Wisconsin **Teen Accused of Plotting to Gun Down Students at School 
School/Assault Zoloft Antidepressant 2006-02-15 Tennessee **Teen Attacks Teacher at School 
School Shooting Threat Antidepressant 1999-04-16 Idaho **Teen Fires Gun in School 
School Hostage Situation Paxil & Effexor Antidepressants 2001-04-15 Washington **Teen Holds Classmates Hostage with a Gun 
School Hostage Situation Antidepressant WITHDRAWAL 2006-11-28 North Carolina **Teen Holds Teacher & Student Hostage with Gun 
School Knife Attack Med for Depression 2006-12-06 Indiana **Teen Knife Attacks Fellow Student 
School Massacre Plot Prozac Withdrawal 2011-02-23 Virginia **Teen Sentenced to 12 Years in Prison For Columbine Style Plot 
School Shooting Celexa & Effexor Antidepressants 2001-04-19 California **Teen Shoots at Classmates in School 
School Shooting Celexa Antidepressant 2006-08-30 North Carolina **Teen Shoots at Two Students: Kills his Father: Celexa Found Among his Personal Effects 
School Shooting Meds For Depression & ADHD 2011-03-18 South Carolina ** Teen Shoots School Official: Pipe Bombs Found in Backpack 
School Shooting Threat Antidepressant 2003-05-31 Michigan **Teen Threatens School Shooting: Charge is Terrorism 
School Stand-Off Zoloft Antidepressant 1998-04-13 Idaho **Teen [14 Years Old] in School Holds Police At Bay: Fires Shots 
School Shooting Antidepressant WITHDRAWAL 2007-10-12 Ohio **Teen [14 Years Old] School Shooter Possibly on Antidepressants or In Withdrawal 
School Threat Antidepressants 2008-03-20 Indiana **Teen [16 Years Old] Brings Gun to School: There Is a Lockdown 
SchoolSuicide/Lockdown Med For Depression 2008-02-20 Idaho”

END QUOTE

Pharmaceuticals have played a huge role in increasing the quality of life for many who suffer from mental illness. This blog post will address the argument being bantered about this week and implied above: The argument that Mental Illness is the problem, not guns.  I'm a supporter of the Second Amendment so the argument of Mental Health Reform vs. Gun Ownership has no correlation to me.  It's an attempt to put Mental Health on the hot seat to divert attention from conversations on guns.  They are both on the hot seat now because they were two of many pieces to the Newtown puzzle. I'm happy the conversations are happening but saddened for the reason...

I'm sure the point of the Facebook post above was one thing while to me it's something altogether different. My take-away is the fact that Pharmaceutical Companies and their Lobbyists have played a huge role in dismantling Mental Health Services in the US.  They've convinced Insurance Companies that it's cheaper to pay for a three-day hospital stay and have patients leave with an RX but with no support services.  When in fact it isn't (see blog post on the W.H.O.).  The Insurance Industry joined the Pharmaceutical Lobby to dismantle Mental Health Service funding and Insurance Companies responsibilities to policyholders.

Was the premise of the dismantling approach to try a RX if there was no clear-cut diagnosis?  Try every drug there is, keep trying, hopefully something will work.  This approach shows no regard for the effects of the strong meds on the mind, often growing teen minds and all the hormones that come into play. What are these 'trials' doing to the brain?  How long will it take for the RX to level out in the body and work?  What are the side effects (see Hospital Checklist tab above)?  Do the caregivers have the training and ability to watch their loved ones 24/7 until the proper med is found and works? Do they just keep trying until something works or the person snaps if it doesn’t? 

If an industry or two push Doctors to prescribe meds and free up Hospital beds they should have some responsibility, right?  Cause & Effect.  Yet, the resulting snap isn’t their problem nor their responsibility, its societies.

The US Pharmaceutical Industry alone made $300-$400 billion dollars in 2010 and they make nothing from support services.  Their largest customer is the Insurance Industry. US consumers also pay the most for each medicine we purchase, with or without insurance.  Why?  We pay for the R&D too.

I'd like to see these two industries help us help our loved ones by taking a portion of their profits to fund local support services.  There's no downside to giving back to their customers, is there?

Quite a different takeaway.

Get involved.   Ask your elected officials to look at the real issues and problems (see Advocate/Lobby tab above).

Caregiver Isolation.

As a caregiver, who do you talk to about what you're going through and living?

Who could understand? 

A favorite example of mine that I use to illustrate this loneliness follows:   

'If someone broke their foot in August and then broke it again in December you'd feel bad, offer to drive the kids around, cook...anything.  Yet, if someone has a depressive episode in August and another in December they become invisible.  No one knows what to say and they're afraid of the unknown. So they avoid them or the topic, yet are quick to use the term 'crazy' to describe them.'  

Sadly that is stigma, you learn to isolate.  

Fact: 1:4 Americans are caregivers of someone with a mental illness and 1:4 Americans are diagnosed each year with a mental illness.  Movies like 'The Shining' did tremendous damage to our loved ones and prevented so many from reaching out for help. That genre of movie really isolates all suffers of mental illness and scared the public. The percentage of people with acute psychosis, like the Shining character is so small,  less than 1% of the population, it's statistically insignificant.

Stigma is real and it is propagated by the media and my Hollywood to the detriment of the very people around us who need our compassion the most.

My measure of my life is this:  How I treat those who can't help themselves.  

In fact that is my measure for all.

After Newtown. No Quick Fix.

Since Newtown the conversations and need for a quick fix are everywhere.  I remain grateful that the conversations are happening.  I've spoken to State Legislators, written my Federal Elected Officials, Vice President Biden, spoken to Doctors, Psychologists, caregivers, neighbors, and public safety officers. Understandably we all want to make sense of this horrifc tragedy and never let it happen again. Yet the issues are very complex.

It's natural to want a quick fix. The hard truth is that it took decades to get here and it will take decades to fix the mental health system. There is too much blame to spread, it permeates every layer of society and the political system. The decisions to cut extremely effective and empowering services ocurred slowly over several decades. No one that I've spoken to took away the major funding for these effective support systems, the low hanging fruit so to speak, but their predecessors did.  I fear that after one month of true dialog we'll turn to quick fixes of the symptoms, a feel good process' because the issue is ugly and very complex.  

There is no quick fix, the burden is on the caregivers and they too are stigmatized.  There's an article about a quick 10 minute screening that Medical Doctors can do to screen for mental illness (link in references).  I'm not confident that that is an answer.  A Psychiatrist from PsychCentral best described my concerns of this screening process, it's labeling and implications  (see link in references). This screening tool could be wonderful if there were accessable and affordable services available and the patient accepts the Medical Dr's opinion.  As someone who watched several family member either never accept their diagnosis or conditionally accept them decades later and then only privately.  At which point they're often unable to follow protocols given to them by professionals.  

Why do patients wait so long to accept help?  Accept their diagnosis?  Stigma.  I fear the approaches being bandied around to these very complex issues will only compound societies stigma and prevent people from getting help for themselves and thier loved ones.  We as caregivers and consumers of boht covered and unvcovered Mental Health Services for our loved ones know what is effective and needed.  The answers are there for anyone who will listen.

Money would be best spent being put into restoring effective programming and services to support those whohave accepted their diagnosis' and to support also caregivers so they can work and have a respite are the ONLY responsible answer.  Anything else is window dressing.

It may not be what society and politician want to hear but it is the truth.  Society can no longer look the other way and through this issue and politicians refusing to fund these programs yet funding pork places a responsibility on them. Let's look at the real issues and to listen to the caregivers and organizations like NAMI. Nothing is new in Mental health care needs, actually there is...no funding.

The measure of man is how they treat the lesser amoung the.