Beyond Hope, to Promise: Treatment Works

For the first time in years, Ben has spoken to me about goals - and he actually has some, that he is willing to share with me.

When you have a goal, it can be risky to say it out loud. What if you fail? What if your dreams don't come true?

Treatment, the Foundation for Progress

For so long, Ben has been busy getting his life back to where it might have been had his progress not been interrupted by psychosis, hospitalizations, and regrouping. Step by small step, he has returned to college part-time, and recently celebrated a full year of part-time employment. But we have not dared ask, "where will this all lead?" or "What are your plans when you get your degree?". We didn't dare. It has been enough, the reality of these first steps. We tend to stay focused on today.

But Ben must be gaining confidence, as he now talks about wanting to "give back to the world" - as a teacher, perhaps, or an author. Will he get there? He just might. But, not all overwhelming goals, I am encouraging him to take one step toward each one and re-assess as the view gets closer.

But none of this would be possible without the treatment he is receiving for his schizophrenia. None of it. Without treatment, he would most likely be homeless, in jail, in a nursing home, or - let's just say it - no longer alive. Now, with treatment (medical, and also emotional and structural),  we have hope, and have taken one more small step:  his life also has promise.

Treatment is too often denied, not funded, not mandated - and that is a shame. Watch this video from the Treatment Advocacy Center about how Treatment Makes a Difference. Because it does. And we must keep fighting for it.

Schizophrenia, James Holmes, and Hindsight

I think the psychiatry career of  Dr. Lynne Fenton may be over.

Worse than that, she must be questioning whether she could have done anything to prevent the "Batman shootings" in Aurora that killed 12, and wounded many others.

James Holmes: Schizophrenia?

So it leaks out that shooter James Holmes has been in "treatment" for schizophrenia. Big Duh. It was only a matter of time before that was revealed, sadly.

The question, though, is this: what kind of "treatment" was he getting?

Holmes in court

According to this PBS Report, and interview with CAROL LEONNIG,  of The Washington Post

"(New information) shows that James Holmes, the lead and only suspect in this shooting rampage in Aurora, Colo., was seeing a psychotherapist or psychiatrist in his university where he was a graduate student. She was a very senior psychotherapy director, basically the medical director for the outpatient clinic for mental health treatment for students.

And she was seeing him for some time before this tragic event...Lynne Fenton is the doctor in the case. Her specialty and what she has been mostly researching is schizophrenia."

What has yet to be revealed is whether or not Holmes was taking medication for his schizophrenia, and whether he should have been committed to a hospital stay - whether he "wanted to" or not - if there were any signs of this possibility of violence.

Could Treatment Have Prevented the Tragedy?

This leads us to the issue of "Assisted Outpatient Treatment" well-covered by the Treatment Advocacy Center - so I will say no more about that in this post.

But there is also the issue of James Holmes' family life.

Grief in Aurora

There are those who will point to his parents as the "cause" of his actions - yes, still. But I know all too well how the best parents can feel powerless in the face of schizophrenia - especially in the absence of support and education.

The Grief of Countless Families

Check out this Open letter  "To the parents of James Holmes: Our son has schizophrenia; we know how hard it can be" . In it, the family expresses first-hand empathy for the confusion and chaos that schizophrenia can bring to a family.

and this was my response (among many other comments)

Dear Margaret - and family - Thank you for this empathetic, beautifully written open letter. There will be those who do not believe your point of view; perhaps, before my own son Ben developed schizophrenia, I might have been one of them.

But no longer.

Ben is 30, and we have been through the same confusion, shock, grief, and anger as you. Eight hospitalizations later, a few of them as relapse during the recovery period that began when Ben's meds began to restore his brain at last (not completely, of course, but enough to allow a slow thaw from his "frozen in time" state), we are grateful for every small step Ben takes to find a new normal for his life.

He has a job, goes to school and does well, and can - at last - take family trips with us with little fear that his behaviors will scare flight attendants.

It has been a long road, and we still monitor Ben's medications - because in two days without them he will wind up back in relapse. I wish he didn't need them - and perhaps, as he ages, this may change if he is carefully monitored - but right now he absolutely needs this treatment - medication, support, structure, community, purpose and love.

Perhaps if James Holmes had had treatment that works - involuntary, if necessary - this could have been prevented.

My heart goes out to you, and all affected by this senseless tragedy - including the Holmes family, and even James himself.

We are lucky, perhaps, to have Ben back in our lives in such a positive way - but I know that we were helped immeasurably by education (especially the Family-to-Family program at NAMI, and even the website communities like HealthyPlace that provide info and perspective) and by the stories of others - which is why we wrote our memoir, Ben Behind His Voices (which included some resources that saved our family) -Thank you for sharing your story and perspective. Perhaps it, too, will make a difference.

best,
Randye

PBS AZ Opening Question: "Who is Ben?"

The interview for PBS in Phoenix, AZ last Thursday began with this wide-open question:
Who is Ben?

How to answer? Well -

different trees, same mental health issues

He's my son.

He is a sweet, loving, bright, caring, 29-year-old.

And - he has paranoid schizophrenia.

Very importantly, he is being treated for schizophrenia.

Here's how I answered this question, and the thought-provoking ones that followed, in this PBS interview on Arizona Horizon with Ted Simons.

In the same state where Jared Lee Loughner just lost his third appeal over forced medications, this is a very important distinction. My son, Ben, is in treatment.  Loughner, who killed six people and wounded former U.S. Rep. Gabrielle Giffords and 12 others in nearby Tucson just over a year ago, did so as a person whose schizophrenia had gone untreated for too long - and with disastrous results.

Here, in the state of Arizona where many still seem in a state of emotional disbelief over what happened in Tucson, the consequences of inadequate care and services for those suffering with mental illness seems even more obvious - and undeniably important.

In three days, I have made the rounds, courtesy of the Arizona Foundation for Behavioral Health (AFBH)andASU's Center for Applied Behavioral Health Policy, speaking in a community lecture, two media interviews, and meetings with NAMI as well as university students and educators in the field.

It has been a whirlwind - and I have met so many wonderful people who care about the issues that can make a difference for all of us affected by mental illness: people who have been diagnosed, those who love them, and the community they live in.

I have but one story to tell with full accuracy - our own - but I have heard many more in these few days. I hold tight to the belief that, one story at a time, shared without shame and empowered by education and courage, we can all make a difference in the way services for those with mental illness are funded, and to the laws that need to be passed to increase research, provide resources, and restore dignity and health to those who have been let down by the system that used to help them live a useful, dignified life.

Mental Health, Community and Potential:The Clubhouse Model

Last week NAMI-CT's Fairfield Affiliate hosted an informative and inspiring Legislative Social - over 100 in attendance, including about a dozen state legislators, all there to hear about programs and services that help those affected by mental illness live fulfilling, purposeful, hopeful lives. I wrote about it here as well, on my Mental Illness in the Family blog.

My point there, as expressed in my comments at the meeting: don't let the success of these programs and the amazing young adults participating in them lull you into a false sense of security that continued funding is not necessary. It is. Oh, it is. In this climate of budget cuts for the look of the bottom line, never forget that treated mental illness is always way less expensive than the cost - financial and emotional - of untreated mental illness. Keep funding what works!

And here is something that works: the International Clubhouse model. Fountain House in NYC, Laurel House in Stamford CT, Shore Clubhouse in NJ, many others, and here an example from Bridge House in Bridgeport CT. This video was written, produced and voiced by the young adult members at Bridge House.

Possibility, Respect, Understanding. Here is the video. Enjoy.

Crisis Intervention Team Training Makes a Huge Difference

Officer Newkirchen, Deputy Chief Lyddy, Captain Smith

Early this month I attended the annual speaker meeting of NAMI Fairfield, a very strong affiliate in Connecticut.  Our guests? Members of the local police force, one of its eight officers trained so far (as of the end of this month) for the CIT (Crisis Intervention Team).

Here a few things I learned:

1. All Police Academy graduates have had some training in Crisis Intervention. The CIT-trained officers, however, are have advanced knowledge and skills. Kind of like getting the heart specialist instead of the general practice doctor.

2. Police Officers really do care, and want to prevent crime rather than have to make arrests after the fact.

3. Police force hires only about 1% of those who apply. Wow.

4. Those with mental/emotional needs 7 times more likely to encounter law enforcement

5. CIT Actions now include follow-up with the families after an incident to gather key info and make sure they know about resources. Many are unaware of support groups and other places for info/help.

6. Families can pre-register information for the CAD (Computer Aided Database) in case of future incidents.

7. "No one likes to make arrests."

8. CIT Training helps us all. And these officers deserve our thanks. I know, personally, that without the empathy and understanding police officers showed when Ben was confused and symptomatic, his current life might be very different. Officers in the know took him to the hospital, took the time to call me for information, and handled Ben with respect and care. Thank you.

9. Any dollars spent on CIT Training saves lots of taxpayer dollars later. Untreated mental illness has a much higher cost, financially and emotionally, than treated mental illness. Ask my son, who is earning a salary instead of costing the state money for a long-term stay in a nursing home. Prevention works, and saves lives.

"Person-Centered Treatment": Yes, please!

Ben is getting closer to release from City Hospital - this time. Some of you have asked about the audio excerpt I posted a few days ago - when did that take place? That excerpt is from my book, the incident dated one week prior to Ben's first admittance in 2003.

Treatment Advocacy Center, for info and advocacy

This year, 2011, marks Ben's first hospitalization in over six years, and this post is about the current setback. What's different now? Mostly this: we've had six years of evidence that Ben can thrive in a group home setting, and a devastating one month of evidence that moving him way too quickly into independent living, without appropriate transition "person-centered" services, was not well thought out.  Simply put, the new staff did not take the time to get to know Ben, his needs, and especially how to properly supervise his medication intake. The result? Over one month now, in the hospital. And now, grateful he is starting to respond once again to his meds, we face the next big question: Where will he go once he is discharged, and how to avoid another relapse? 

They have planned a meeting at the hospital re discharge, and I plan to be there. But, just in case, I drafted a letter to all concerned. Here is part of what I said:

"I want to be perfectly clear about what Ben needs, not just as a patient but as a person – for a successful post-release program.
I am aware, of course, that restrictions exist due to legal and financial restraints over which you may have no control – but as you can see, an ounce of forethought can prevent a very expensive (both financially and emotionally) hospitalization.
First of all, let me state for the record that Ben clearly is not – and was not, at the time of his transfer – ready for independent living of the sort arranged by your agency in May. This should have been clear from his obvious resistance to medication at the time of his intake meeting. A vital part of his recovery process – and the reason he was doing so well in a group home setting – is careful, unwavering supervision of his meds. Even though his success and recovery grew in the past SIX years before his sloppy transfer to the low-income-housing that was arranged, it could only be built upon the foundation of careful supervision of his meds. Even a med nurse is not the answer. It is too easy for Ben to refuse to open the door, pretend he is not home, or to legitimately not be able to be there because of work, school (in the fall he often has evening classes) or the AA/NA meetings he attends. He needs to be accountable to someone for his med compliance- but also have the flexibility to attend the other things that are vital to his recovery such as family events, school classes, NA meetings. This was entirely workable at Harrison House, where – above all – each and every staff member was aware of how closely he had to be supervised while taking his meds.

Now to the rest of his recovery needs, his “Person Centered Treatment.” Ben’s prior success, while based on the foundation of his medical treatment, was based on three other vital elements:

• Community – staff that truly knew him and - in most cases – actually cared about him, applauded his achievements, served as parental figures; housemates who, while not his best friends and often less functional, still provided someone to eat with, watch TV with, go to meetings with. At the apartment building that was arranged, he can’t even smoke a cigarette in front of the building. No "loitering." Isolation is encouraged there. Wrong!!!!! Yes, there are options for socialization, but Ben, as is often the case with mental illness, does not have the self-motivation to go to these places, is apprehensive about the first steps, and finds it easier not to try the unknown. Making an “exercise class” available is not enough.
• Purpose – school, chores that help others, groups to attend, feeling needed. In this lonely apartment? He is lost. No one needs him, except at work – and that is not enough, as you saw.
• Structure – being home to do chores, a schedule for daily living, requirements for NA/AA meetings etc. – but NOT expected to self-motivate. The negative symptoms of mental illness include a reduced ability to plan a productive day, and to self-motivate. At Harrison House, the requirements – and the fact that others were required to do the same (community, again) – gave Ben the structure within which he could spread his wings to other goals (additional meetings, school, etc) himself.

You have told me there are “no beds” anywhere else. I know there is a long waiting period. I know Ben thinks he is happy in this isolated, roach-infested apartment. Maybe our choices are limited now – but if Ben returns to this apartment without the support he needs, he will be back in the hospital before you blink your eyes. So let’s prevent that.

Person-Centered treatment, penny-wise-pound-foolish budgets, required assisted outpatient services, and support for medication adherence are all hot legislative issues, and I know that in CT you are especially limited by the lack of power they allow for case managers as well as families.

But Ben is a person, and there is still a way to work together, and with him, for the treatment he needs to stay functional, while honoring the fact that those with mental illness don’t always “know what’s good for them”, especially while impaired."

Thank you.
Randye

NAMI National Convention:Where We Need to Be

Chicago. Ben is still in the hospital back in Connecticut, and I am here - at the NAMI National Convention.  This isn't the first time I've had to make this decision. Six years ago, in 2005, I left Ben to go to St. Louis for another NAMI function, so I could become a state trainer for the Family-to-Family program. Then, as now, I don't regret my decision. Ben is in good hands (City Hospital staff is wonderful, and Ben is responding - knock wood - to his meds at last) and his sister and brother-in-law are nearby to visit and, well, just to be there.

And, as one speaker reminded us yesterday, Ben has to take care of himself too. I can supply the support, the framework, put the pieces into place - and will continue to do so - but this is Ben's journey too. And, for now, my best decision is to take care of myself. So, husband Geoff and I hit the road on Wednesday and drove 14 hours to be here.

The right decision. Here, I am surrounded by a couple of thousand of people diagnosed with mental illness (including Jessie Close of BringChange2 Mind),  families of those diagnosed (including newsman Bill Kurtis and journalist Pete Earley, author of Crazy: A Father's Journey Through America's Mental Health Madness) and friends both personal and professional. This is where we all need to be right now - talking about everything from proposed budget cuts for Medicaid (talk about crazy!) to the need for Assisted Outpatient Treatment (the lack of it in Connecticut - one of the only six states without it - is the reason Ben has had his relapse).

We all need to be here. We all need to share, advocate, learn - and, yes, laugh. So much has been done, so much needs to be done. I'll share more when we get home. Right now there's a workshop on Supported Housing and I'm on my way.

always a wrinkle: the problem with State Budgets

The wide spectrum of developments when your child has a mental illness.

Plus side -wonderful weekend with Ben. Family game of Boggle as we hunkered down in the rainstorm. Ben beat us all, soundly.  His brain when balanced: amazing.

Minus side - Monday surprise: suddenly, the group home where Ben has been living for over five years has announced that Ben will have to leave soon; after all, they are "transitional housing".  No matter that the other residents have been there even longer than Ben.  Also, despite requests, his agency caseworkers have not moved at all in those five years toward getting him on a waiting list for another program.  So now everyone will have to move on this.

If Ben were to live here at home while in transition (not a good move anyway, as I am a much better mother when I am not a policeman/caseworker too), it would mess up his benefits (meager as they are).  This is what can happen when the State decides it has to make budget cuts that make absolutely no sense in the long run for those with mental illness who are STABLE.  At last. Weigh the cost of supervised housing/stability to homelessness/repeated hospital stays. Should be a preventive care no-brainer.

Grrr.

Good news for the memoir, though! some interest!
Ben Behind His Voices: One Family's Journey through Schizophrenia to a New 'Normal'

represented by Claire Gerus Agency

Medicare premiums stopped?

The notice comes from Social Security, informing me that "The State" will no longer pay for Ben's Medicare - as of two months ago? No reason given. What? What does this mean? Is he without Medical Insurance then? He has no income, and is trying so hard to get his life back. For the first time in three years, he's in school and actually loves it - doing his assignments, taking the bus every Tuesday and Thursday. His benefits add up to under $900 a month, from SSI, SSDI and a housing supplement. All this to pay room, board, bus fare - with about $25 left each week for all other expenses (including buying lunch at school). He cannot possibly afford to pay for his own Medicare. What gives?

So I call Ben's caseworker at his house, who is sympathetic but doesn't understand what's going on either. The house manager says "I'm clinical, not legal", so he doesn't fully understand the benefit system. I call Social Security, who says to call the State. The State operator sends me to an extension where there is no voice mail and rings 20 times; I call back and ask the receptionist for help. Someone has got to know something. She takes pity on me and looks up Ben's info; evidently a Mr. Banner closed Ben's case in 2007. What?!?! I call Mr. Banner and leave a message. I call my lawyer, whom I can no longer afford to pay, in a panic. What does this mean?

Finally Mr. Banner calls me back and is nicer than I expected. He says Ben needs an EMB, I ask what that is, but he doesn't really know what it stands for. Social Security has to make the determination as to whether Ben is qualified to get Medicare. He sends the EMB. I call Social Security, and speak to another actual human. She tells me this should all be straightened out soon, but since the SS office is two months behind, Ben's premiums will continue to come out of his benefit check for another two months, and then he will be reimbursed.

I call Harrison House, where Ben resides. I think we have this straightened out. But no one seems to know how this occured in the first place. My lawyer returns my call and says she's glad I was able to get this straightened out. Me, too - if it is.

What do consumers with a mental illness do if they have no mother to chase down the answers with phone call after phone call? If six mentally healthy adults can't figure it out, don't know where to turn, how does the system work for someone whose mental capacity is compromised by more than just a ridiculously complicated system? No wonder homelessness seems like a simpler option.

I'm so grateful Ben has people on his side, including me. I'm so grateful.