My Last Advocate Post

I’ve decided to stop advocating.  My experience with Congressman Murphy has taught me that one person cannot make a difference.  I can’t even get my voice heard.  It’s cowardice on his part, but a lesson for me.  Unless you belong to an organization with money, you get nowhere with Congress.

I have tried for years believing I was making some kind of a difference, but really what did I accomplish? I accomplished the goals of an organization that really didn’t value the true needs of those of us with a mental illness.

Whether or not Murphy’s bill passes, we still have a lack of psychiatrists, a lack of psych beds, a lack of good quality care in this broken mental health system.  When pdocs want you to fill out paper work prior to an appointment to see if you’re a “good fit” for them, there’s a real problem.  When pdocs can’t take on any new patients because they are already overloaded, there’s a problem.  When someone in a rural area can’t find a pdoc within 100 miles, there’s a problem.  These problems won’t be addressed until people with a mental illness speak up!  I’ve tried, but I’m tired of doing it alone.

Sorry to be so negative in this post, but the wind has just been taken out of my sails.

What is a Mental Health Advocate?

Well, by definition the word advocate is a verb…an action word.  It means “to speak or write in favor of; support or urge by  argument; recommend publicly”.  It goes on further to describe a person who says they are an advocate.  It says “a person who speaks or writes in support or defense of a person, cause, etc”.  Yes, I realize my teacher side just came out, but it had to.  When you call yourself an advocate of a cause, like mental illness and suicide prevention, you can’t just sit back and regurgitate some pre-written email or letter that an organization wants you send to your representatives.  It needs to come from you.  It needs to come from the heart.  It needs to be original.

I’m not condemning anyone who chooses this route.  I did it myself, but I also used it as a learning experience for when I stepped out on my own.  Some of you may have read my last blog about HR3717.  It has some good points in it, but it is very detrimental to the mental health community.  I’ve seen many people speaking out against it on some of the boards I belong to.  Yet, when I ask for help, you could hear a pin drop.  So that brings up the question of “What is a Mental Health Advocate?”.

Is it someone who blogs about it?  Well, some might argue yes.  I would say maybe.  It depends on who that blog is reaching and how effective it is at raising awareness and advocate support.  My blog? I would say not really advocacy.  I try sometimes, but people don’t want to read those.  Why am I posing this question now?  Because I’m fed up!  I’m fed up about hearing people complain about the system and then not striking when they are given the chance to do something about it.  It’s like complaining about the president when you didn’t vote in the election.

Is it someone who shares their story?  Well, that depends as well.  I’ve shared my story within the mental health and suicide prevention community to thousands of people.  I wouldn’t call this advocacy.  I’d call it more giving insight and (hopefully) giving hope.  I’ve shared my story with over 100 members of Congress.  I call this advocacy.  This is putting a real face to a real illness for legislators that previously had no clue.  It’s opening eyes.  Will it do any good?  I don’t know, but I have to try.

Is it someone who’s goes into their community and tries to educate?  I would say yes, that is advocating.  This ties into the previous description.  Sharing your story and being open about mental illness with people who don’t know is HUGE.  It’s scary sometimes, but can be so rewarding.

I’m no expert and I figure I’ll probably lose a few (if not more) readers over this, but we can’t sit back and let Congress make and pass laws about mental illness when they are truly not informed.  We are the only ones that can do that.  If HR3717 passes, I  will be very worried for the state of mental health care in our country.  It’s not that I’m trying to defeat it.  I just want to help them change it so that it doesn’t alienate us so much.  So this is my last plea.  If you would like to join with me and help, please let me know.  I have the bill summary (as the original is about 100 pages long) and a list of emails.  It’s time to make a stand and make a difference.

Thank you for reading…I hope you will continue to do so.  🙂

Murphy’s Rotten Bill

To give you some background, I was in the process of getting a phone meeting with Rep. Murphy.  His scheduler then decided he was fully booked…Really? Too busy for a 10-15 minute conversation?  So I’ve been passed off to his Senior Legislative Aide, not even his Chief of Staff that deals with policies.  This aide assures me that he will put what I write on Murphy’s desk. Murphy gets plenty put on his desk, do you really think he’s going to see this let alone respond to it.  If he is too much of a coward to speak with someone who has a mental illness in person, then why would he respond to my letter?  Oh, ya…I am also sending it to all 108 co-sponsors as well.  I told them that all I wanted to do was bring both sides to the table. Apparently this is a sticking point.  Below is a summary of the bill (the original is about 100 pages) and in bold are my ideas.  I’d love to get your opinion.

Helping Families in Mental Health Crisis Act of 2013 – Creates in the Department of Health and Human Services (HHS) an Assistant Secretary for Mental Health and Substance Use Disorders, who shall supervise and direct the Administrator of the Substance Abuse and Mental Health Services Administration (SAMHSA).

Why mess around with SAMHSA? It’s running fine on it’s own. By implementing your agenda, you are endangering wonderful programs such as The Trevor Project that rely on SAMHSA.

Directs the Assistant Secretary to establish a National Mental Health Policy Laboratory to: (1) identify and implement policy changes and other trends likely to have the most significant impact on mental health services; (2) collect information from grantees; and (3) evaluate and disseminate to such grantees evidence-based practices and services delivery models, using the best available science shown to reduce program expenditures while enhancing the quality of care furnished to individuals by other such grantees.

This National Mental Health Policy Laboratory is NOT necessary. What we need is accountability for those already working in the field. This will vastly increase the quality care that patients receive. We also need to provide access to residency positions for new psychiatrists. If we can do this, it would greatly improve the amount of psychiatrists available to treat people and it would force those already practicing to improve how they practice.

Amends the Public Health Service Act (PHSA) to require the Assistant Secretary to establish: (1) an Interagency Serious Mental Illness Coordinating Committee; and (2) a four-year pilot program to award up to 50 grants each year to counties, cities, mental health systems, mental health courts, and any other entities with authority under state law to implement, monitor, and oversee assisted outpatient treatment programs.

Who decides what is a “serious mental illness”? As a person with Bipolar Disorder and Anxiety Disorder, I would consider these to be serious mental illnesses. They are quite debilitating. Every mental illness has the potential to become extremely serious. The wording needs to be changed to just say “mental illness”. As a psychologist, you should know not to exclude anyone; this only adds to the stigma we are trying so hard to fight.

Directs the Assistant Secretary to establish a program of tele-psychiatry and primary care physician training grants to states to promote the use of qualified telehealth technology for the identification, diagnosis, mitigation, or treatment of a mental health disorder.

Tele-psychiatry is already in use.

Directs the HHS Secretary (Secretary), in coordination with the Assistant Secretary, to award planning grants to enable up to 10 states to carry out 5-year demonstration programs to improve the provision of behavioral health services by federally qualified community behavioral health clinics.

Why only 10 states when it is the entire nation that is in desperate need of a complete overhaul of the community mental health system Also, How are these states chosen? What happens after the 5 years? Are programs abandoned or are they then implemented throughout the US?

Requires the Assistant Secretary to certify federally qualified community behavioral health clinics that meet specified criteria.

This sounds good, but what are those criteria. For instance, my local county behavioral health clinic is in desperate need of intervention. They treat their clients like numbers. They don’t listen to them. You can hear staff talking about them. These are the experiences of friends and students that are forced to go there because they don’t have private insurance.

Requires the caregiver of an individual with a serious mental illness to be treated as the individual’s personal representative with respect to protected health information, even though the individual has not consented to disclosure of such information to the caregiver, when the individual’s service provider reasonably believes it is necessary for protected health information to be made available to the caregiver in order to protect the individual’s health, safety, or welfare or the safety of one or more other individuals.

I cannot say enough about what a mistake this would be to allow this to remain in the bill. I understand why it’s there, but our privacy in our sessions is sometimes all we have. Please do NOT give away our right to privacy. This will cause people to either leave treatment or not go in the first place. If they choose to remain in treatment, they will not be as forth coming with information and this will severely hinder their treatment and thus any hope of recovery. We’re not treated very well in ER’s. We face stigma on a daily basis, sometimes from our own family. Even in treatment centers, we’re not treated as human beings. So, our private conversations in our sessions are sometimes all we have.

Amends the General Education Provisions Act to allow an educational agency or institution to disclose to such a caregiver the individual’s education record in certain related circumstances.

Same as I just stated above.

Amends the Omnibus Crime Control and Safe Streets Act of 1968 to make available: (1) Edward Byrne Memorial Justice Assistance Grants for mental health programs and operations by law enforcement or corrections officers, and (2) public safety and community policing grants to provide specialized training to law enforcement officers to recognize and intervene properly with individuals who have mental illness.

This is excellent. We have CIT training in my town and it has greatly reduced the number of deaths by suicide. It’s nice to have an officer meet with someone with a mental illness and they “pick each others brains” so to say. They can let each other know what will and won’t work in mental health situations. This is what I’m trying to do with you.

Reauthorizes and revises requirements for the Mentally Ill Offender Treatment and Crime Reduction Act of 2004.

I would just like some clarification on what they are.

Authorizes the Attorney General to award grants to: (1) establish or expand veterans treatment court programs; and (2) enhance the capabilities of a correctional facility to identify, screen, and treat inmates with a mental illness, as well as develop and implement post-release transition plans for them.

This seems good to me.

Requires any data prepared by or submitted to the Attorney General or the Director of the Federal Bureau of Investigation (FBI) with respect to homicides, law enforcement officers killed and assaulted, or individuals killed by law enforcement officers to include data about the involvement of mental illness in such incidences, if any.

I’m not too sure about this one. This paints us in a very violent light and we really aren’t that. We are more likely to be the victim of a crime than a perpetrator. We only account for about 1% of all the violent deaths nationwide. To more accurately get a picture, we need NVDRS in every state. That would give you the information you’re looking for.

Directs the Comptroller General (GAO) to detail the cost of federal. state, or local imprisonment for persons who have serious mental illness.

Amends title XIX (Medicaid) of the Social Security Act (SSA) to prohibit a state medical assistance plan from prohibiting payment for a same-day qualifying mental health service or primary care service furnished to an individual at a federally qualified community behavioral health center or a federally qualified health center on the same day as the other kind of service.

Allows states the option to provide medical assistance for inpatient psychiatric hospital services and psychiatric residential treatment facility services for individuals age 21-65.

Amends both SSA titles XIX and XVIII (Medicare) to cover prescription drugs used to treat mental health disorders.

Amends the PHSA to increase funding for the brain initiative at the National Institute of Mental Health.

Transfers responsibility for the administration of community mental health block grants to the Assistant Secretary from the Director of the Center for Mental Health Services (CMHS).

Revises requirements for the funding agreement under a formula block grant to a state for community mental health services to prescribe the general standard under state law for court ordered inpatient or outpatient mental health treatment as well as assisted outpatient treatment.

This is another sticking point for me. Forced treatment rarely, if ever, has a lasting effect. The decision to be treated has to made by the patient. I know this was put in for family members of adult children with mental illness, but I’ve spoken with so many people across this country that agree with me. They’ve forced their loved ones into treatment only to have them relapse very soon after release. That decision for treatment is tough because we (those with mental illness) know that it is something we must do for life. The meds are for life. The therapy is for life. The constant use of coping skills is for life…. The list goes on. These are life long illnesses and we have to have some control, some say in it because we have no control over the illness itself.

Requires the Assistant Secretary to evaluate the combined paperwork burden of certain community mental health centers as well as of certified federally qualified community mental health clinics.

Directs the Secretary of Education, along with the Assistant Secretary, to organize a national awareness campaign to assist secondary school students and postsecondary students in: (1) reducing the stigma associated with serious mental illness; (2) understanding how to assist an individual demonstrating signs of a serious mental illness; and (3) understanding the importance of seeking treatment from a physician, clinical psychologist, or licensed mental health professional when a student believes the student may be suffering from a serious mental illness or behavioral health disorder.

Amends the PHSA to include as health care providers any behavioral and mental health professionals, substance abuse professionals, psychiatric hospitals, certain community mental health centers (including one operated by a county behavioral health agency), and residential or outpatient mental health or substance abuse treatment facilities.

Amends SSA title XVIII (Medicare), with respect to incentives for meaningful use of certified electronic health records (EHR) technology under the pay schedule for physician’s services, to include as additional eligible professionals clinical psychologists providing qualified psychologist services and clinical social workers. Subjects any additional eligible professionals, including those under a MedicareAdvantage (MA) plan, to reductions in incentive payments after a certain date for failure to be a meaningful EHR user.

Amends SSA title XIX (Medicaid) to treat as Medicaid providers the following additional Medicaid providers: (1) public and certain private hospitals that are principally psychiatric hospitals, (2) certain community mental health centers, and (3) certain residential or outpatient mental health or substance abuse treatment facilities.

Just an FYI here: Medicaid will pay for an ambulance if you are involuntarily committed. If you are seeking help and want to voluntarily commit yourself, they won’t cover the ambulance ride. I think this needs to be changed.

Makes eligible Medicaid professionals certain clinical psychologists providing qualified psychologist services and certain clinical social workers.

Amends the PHSA to accord health care professional volunteers at community mental health centers and federally qualified community behavioral health clinics the liability protections of Public Health Service employees.

Requires the Assistant Secretary to transfer all functions and responsibilities of the Center for Behavioral Health Statistics and Quality to the National Mental Health Policy Laboratory.

Revises the duties of the CMHS Director.

Reauthorizes the Secretary’s authority to address priority mental health needs of regional and national significance.

Amends the PHSA to reauthorize and revise requirements for a youth interagency research, training, and technical assistance center to prevent suicides (the Suicide Prevention Technical Assistance Center). Expands the program’s focus from youth suicides to suicides among all ages, particularly among groups that are at high risk for suicide. Repeals authority for grants to establish research, training, and technical assistance centers related to mental health, substance abuse and the justice system.

Reauthorizes a program of grants for the development of state or tribal youth suicide early intervention and prevention strategies.

Reauthorizes and revises a grant program to enhance services for students with mental health or substance use disorders at institutions of higher education. Requires the Secretary (who currently is merely authorized), acting through the CMHS Director, to award grants to enhance such services and to develop best practices for the delivery of such services. Permits grant funds to be used for the provision of such services to students and to employ appropriately trained staff. Requires the Secretary to give special consideration to applications for grants that describe programs that demonstrate the greatest need for new or additional mental and substance use disorder services and the greatest potential for replication.

Requires the Assistant Secretary, before making a grant to a public entity for comprehensive community mental health services to children with a serious emotional disturbance, to consult with the Director of the National Institutes of Health (NIH) to ensure that the grant recipient will use evidence-based practices. Reauthorizes funding for such grants.

Repeals current authority of the Secretary to carry out directly or through grants, contracts or cooperative agreements with public entities a program to assist local communities in developing ways to assist children in dealing with violence.

Reauthorizes the National Child Traumatic Stress Network. Amends the Protection and Advocacy for Individuals with Mental Illness Act to reduce corresponding funding for protection and advocacy systems for mentally ill individuals.

Prohibits lobbying by any such systems accepting federal funds to protect and advocate the rights of individuals with mental illness.

Does this mean Congress will do the same for all other organizations whose lobbyists receive federal funding? I think you ought to take a look at that.

Prohibits the SAMHSA Administrator from hosting or sponsoring any conference that will not be primarily administered by SAMHSA without giving at least 90 days prior notice to specified congressional committees.

Prohibits the SAMHSA Administrator also from establishing (and the Secretary from delegating to the Administrator responsibility for) any program or project not explicitly authorized or required by statute. Terminates by the end of FY2014 any SAMHSA program or project not so explicitly authorized or required.

Another Sleepless Night

My pdoc has given me enough medication that I should be sleeping soundly through the night.  Well, instead I start to fall asleep about 6pm (before I take my bedtime meds).  As per usual, last night I fell asleep around 6pm until about 8pm.  I got up  and took my bedtime meds.  I had a bit of a second wind…well until my husband gently shook me and told me to head up to bed.  I had such hopes of sleep.

This is about the third night in a row that I’ve woken up around 2am or 3am.  This is not a good sign. This could be a pre curser to mania.  I’m usually waking up because my mind is racing (I’m taking so much Clonazapam that this shouldn’t happen) or I’m waking up with migraines.  Again, this shouldn’t be happening either.  Oh ya and I’ve gained 10 pounds since I started taking all of these medications despite watching what I eat and using Myfitnesspal.com.  This is the point I usually just want to give it all up…give up the meds because they just don’t seem to be working right and the side effects are just brutal.

I’ve done this dance with pdocs for so many years.  I’m just so tired of it all.  I feel as tough I’m just existing right now…what kind of life is that?  I know nothing is perfect, but after all the years I’ve been trying to achieve some sort of semblance of “normal” and it I’m still no closer to it.  I apologize to my children constantly that I’m not that “normal” mom; that I’m the mom that has to get ECT; that I’m the mom that has to have so many appointments and still things aren’t as I feel they should be.  They just smile and say “I love you”.  I know they do, but I just feel so bad.  I feel like my disorders have robbed them of so much.  Apparently, I’m getting louder and louder in public when something happens that I don’t agree with…I don’t even know it’s happening.  My children just take in stride.  They are awesome.

Some people would say well why don’t you just make your mind up to be well and you will be.  Those people I just want to smack across the face.  Don’t you think I would if I could?  I can no more choose what happens with my disorders than I can choose the color of my eyes.  My disorders (while they don’t define me) are a part of me.  They have opened doors and shut others, but they’ve opened more than they’ve shut.  I know that sounds strange.  It’s helped me realize who my true friends are and that’s been very valuable.  It’s also allowed me to help others.  I guess I just need to help myself now.

So Sick and Tired of NAMI & Rep. Murphy!!!

They are the National Association for the Mentally Ill.  They are suppose to be fighting for us and who do they have as a key note speaker at their National Convention this year?  Rep. Murphy.  The very man who is trying to take away our rights.  He thinks because he’s a doctor in the field that he knows all…well I’ve got news for him…He doesn’t!  I will admit that his bill has some good points, some, but to take away our right to privacy is just WRONG on so many levels.  If this bill passes (and luckily it doesn’t look like it will), so much is going to change and not for the better.

This is the main reason I’ve been trying so hard to get congressional leaders to talk to those of us with a mental illness and news flash: they are all serious mental illnesses!  When they are sitting down with their staff writing these bills, they need to have our input.  We know better than anyone whether it’s going to actually work in the real world of mental health.  We are the ones that use this broken down system, so why not consult us?  You put together their education in the field (if they have it) and our experience in the field and something wonderful can happen.  We might actually be able to get and pass some meaningful legislation that will have a good effect on the mental health community.

We shouldn’t sit idly by while these legislators try to “do what’s best” for us.  We need to take a stand and NOW!  If he has NAMI in his pocket, who’s next?

Meds, Meds, and More Meds!

My pdoc wants me to exercise 5-7 days/week.  I would LOVE to exercise that much…there’s just one problem with that, my meds make me soooo tired!  As I write this, I’m struggling to see the computer screen and keyboard, so please pardon any typos.  She has me on clonazapam for anxiety, lamictal for a mood stabilizer (I guess) and lithium.  I didn’t want to be put on lamictal because it failed me in the past, but she insisted that it could work again…so I gave in.  Now, when I get up in the morning, it takes me forever to actually wake up and be functional.  Then once I am functional (this is around noonish), I have errands to run.  This takes me to about 3pm or 4pm.  By this time, I’m tired again and have to take a very long nap (2-3 hours).  Now, I wake up from that and it takes me about an hour to realize where I am and what day it is and it’s time to get dinner going.  How am I suppose to fit exercise in there?  I do manage to walk a couple of days a week with a friend, but I need to do more.

These meds are just wiping me out.  I’m almost at the point that I want to go off of them again, but I know what will happen if I do that…so that’s not really an option.  So my question is this: How do I manage to get 5-7 days/week of exercise in?  I really want to because my weight is not doing so well and we all know what that does to our moods.

Do any of you have any suggestions?  Is there anything that has worked for you?  I am in desperate need of advice here.  This is a very short blog, but I just don’t know what to do.  I’m sure I’m not the only one this is happening to.