The Precarious Jenga Tower of Life with Mental Illness

My son's life is a never-ending game of Jenga, carefully constructed by us all and always in danger of toppling - as pieces are removed by too many players jugging too many variables and way too little foresight and funding.

This month has been challenging. Five years after Ben Behind His Voices was released, we are living inside a constructed existence composed almost entirely of Jenga blocks. Ben has climbed his way to full-time employment as a restaurant server, and has even earned kudos on Yelp.

Recently one of his friends, a young man struggling with mental illness issues and also transgender transition, was reported missing (he has since been found, thank goodness) and his family was frantic. She drove to our home to ask for Ben's help, any info he might share. In the course of our conversation, she revealed that her son had been prescribed medications for his anxiety and depression but had recently refused to take them - and soon after that disappeared. She told Ben that he was an "absolute inspiration" to her son because he takes his meds -  and has held a job he loves for over two years.

What she hadn't realized is this:

Sure, Ben takes his meds - but he still doesn't think he needs them. He is "compliant" because it's a house rule we enforce - by staying up til the wee hours of the morning (Ben helps close the restaurant 5 days a week) to supervise. Could he refuse? Sure. But we would then refuse to allow him to live with us.

I pray we never have to force this issue. We've done it before - it is risky and painful to all - and so Ben knows we mean what we say. But the whole "compliance" situation is a jenga block that always sticks out, just waiting to be pulled from the stack. It's right here on the foundation level. If that one goes, the whole thing topples over.

But even with that foundation intact, each day there are other pieces that hold his life precariously together. This week, four were pulled out --- and we hold our breath, as do so many families in similar circumstances, that the structure can still stand.

• One - Ben lost his Social Security Disability benefits (SSDI) this week. I know - he is working now, and so shouldn't "need" the funding, but he does. Even though he works, he still has a disability. Every day he lives with the threat of hospitalization, and the job loss that would almost certainly follow. His schizophrenia is currently being "managed", yes, but it's still very much there in the decisions he makes when not focused by his work shift. The large payments on his impulsively-leased new car, insurance premiums he now owes to hold onto Medicare, the costs of food and rent...Social Security was helping with those. But it has been pulled from the stack.

• Two - Ben has been supported by a care team - which now (because of funding cuts) has to discharge him from their client roster. He is "doing so well" that they want him transferred to private practice. Help! This rips the safety net right out from under us. Sure, he is doing well now - but what if.....?  It's terrifying to think we'll have nowhere to turn if Ben makes a wrong turn. Right now, the care team has it easy, as we generally handle medication supervision, transportation, doctor appointments, conservator duties, legal help etc. - but the safety net of a care team has been essential to help us when the mental health system (and the paperwork) gets overwhelming or confusing - which is ALL THE TIME.  I don't have the Social Work Masters degree to understand how the benefits work, and what we need to do when emergencies strike. NAMI Family-to-Family taught me a lot, but we can't know it all.

• Three - The restaurant where Ben has been employed for 2 1/2 years has just suddenly closed its doors! This place was not only his income, but also his source of pride, family, and a feeling of normalcy. I worry that the stress will be too much, not to mention the loss of income. What about his car? His life? What about OUR life, and our bank account? We can't afford the losses that keep coming. Ben had paid us rent, but that's gone now with the loss of SSDI. We cover his medicare premiums, his food....and yet we know how many families would be thrilled to have these "problems" -  a family member with schizophrenia who actually takes his meds (albeit reluctantly), has a job to lose, friends to help?

• Four - He had, after a decade on these medications, a white blood cell count that might force a change in meds. Please, no. Nothing else works, trust us. He has tried them all.

But still.

So that's four sticks pulled from the tower.  More threats always loom for families affected by mental illness.

What if......:

• He can't find another job?

• Medical insurance suddenly refuses to cover the only meds that help him?

• He loses his car?

• He gets anxious and upset by the changes and decides to disappear?

• His symptoms act up due to the stress and his potential employers see it? His friends see it? He has been dropped socially many times before after one "weirdness" display.

Help Prevent This, Please!

The one in four families living with mental illness deal daily with their own Jenga towers. We are never "out of the woods." We work every day to shore up that tower and help our loved ones have a life. We and our loved ones needs support, education, funding, research, and a chance to continue to improve. Please keep that coming. We can't handle the short shrift anymore, even if it looks like we can. Bravery often has fear underneath it. Mental illness deserves respect, funding, and a good - and constant - dose of the reality of how important prevention is.

Schizophrenia and Social Security Benefits

Where to Start?

When we began the process for Ben to qualify for Social Security Disability benefits, I was overwhelmed by confusion, options, paperwork....and had very little idea how to begin, much less proceed. I welcome a guest blogger today, Ram Meyyappan, who has written this about Social Security Disability Help. If you have questions, you can contact him at ram@ssd-help.org 

Thanks!

Here is his article:

Applying for Social Security Disability Benefits with Schizophrenia

The Social Security Administration (SSA) recognizes Schizophrenia as a condition that qualifies for monthly disability payments. In order to be found eligible for either one of the disability programs you must show that despite following prescribed treatments your disease still prevents you from working.

Disability Programs

The SSA administers two different disability programs: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) benefits.Basic eligibility for either program requires:

• you suffer from a debilitating and formally diagnosed medical condition that has been present for at least 12 months, or which is expected to last at least that long, or which is terminal.

AND

• your condition prevents you from maintaining gainful employment in any field for which you would otherwise be qualified.

In order to qualify for SSDI, you must have a strong work history during which you paid FICA taxes. SSI does not take your work history into account. It is a needs-based program for people with limited income and assets. For more specific information on the requirements for SSI and SSDI, visit: http://www.ssa.gov/disability/

Meeting the Disability Listing for Schizophrenia

After meeting the basic eligibility criteria for SSD benefits, your application with the SSA will be reviewed to see if it meets the listing for Schizophrenia in the SSA’s manual of condition that qualify known as the Blue Book. This listing, which appears in section 12.03 of the Blue Book, requires you suffer from one of more the following issues on a consistent or intermittent basis:

• isolationistic behaviors that make you socially and emotionally withdraw

• illogical thinking

• incoherent speech

• inappropriate moods

• hallucinations

• delusions

• catatonia

• overly disorganized behavior

In addition to your application and accompanying medical documentation proving the previously mentioned signs and symptoms, your medical records and other supporting documentation must also show you experience serve limitations, including at least two of the following:

• the ability to participate or complete normal daily activities of living

• the ability to focus on and complete tasks, including normal job duties and tasks in your personal life

• the ability to maintain relationships or otherwise function in social situations

• to persist in life without experiencing lengthy and recurrent “episodes of decompensation”, which are periods during which your symptoms get substantially more prominent and pervasive

 For more information on applying with Schizophrenia, visit: http://www.disability-benefits-help.org/disabling-conditions/schizophrenia-and-social-security-disability

Getting Benefits without Meeting the Listing

Even if you are unable to qualify under either of the listings detailed above, you may still be able to receive disability benefits with Schizophrenia. To do so, you must show through your medical records and other documentation that you qualify for a medical vocational allowance, which simply means that while you do not meet a listed condition, your symptoms of Schizophrenia are still so severe that they prevent you from working.Residual Functional Capacity (RFC) report forms completed by you and by your doctor are the backbone of a medical vocational allowance. RFC reports on mental functioning and physical functioning may be required, dependent upon the symptoms and limitations you experience.

Applying for Benefits and What to Expect

Disability benefit applications can be completed online with the SSA’s website (http://www.ssa.gov/applyfordisability/) or in person at your local SSA office. Either way, it is important that you collect as many of your medical records and other documentation as possible before beginning your application. All of this documentation should be submitted at the same time, or just after, you turn in your completed application forms.

After submitting your application, you should expect to wait at least three months before receiving a decision. Don’t be discouraged if your application is denied. Almost 60% of applications are initially denied, There is an extensive appeals process during which you may still be approved for benefits.

Article by Ram Meyyappan, http://www.disability-benefits-help.org/blog

Social Security Disability Help 

Supported Housing: One Giant Leap for Ben

I'd always been under the impression that when Ben was ready to leave his group home, he'd be gradually weaned off the 24-hour staffing to, perhaps, 16 or 12 hours of supervision. But no. Ben's recent accomplishments, notably lasting six whole weeks at his new job, have forced the issue of getting him "graduated" from supervised housing to the next step. Evidently, there is no middle ground in our state. The next step is living alone. Yes, he qualifies for a med nurse to show up twice a day and carry out doctor's orders for supervision of meds.  Yes, there is help "if he needs it" in the office a few blocks away.  But still. While I share and applaud Ben's accomplishments to qualify for this next step, I am also as concerned about this change as I am happy for him.

Tomorrow, he moves. First and last month's rent? He only has part of it.  Most of his benefits were withdrawn almost as soon as he received that first paycheck.  So guess who has to make up the difference? What do people do who don't have parents to help them?

Furniture? He needs a bed, a table and chairs, the basics of life.  So much need, so soon, with nothing in the bank to pay for it now. What if he had no family? What do others do? I think we'll be making daily visits to Goodwill for awhile. Our family has unlimited love to give, but definitely not unlimited funds. Far from it.

Ah, the thrill of the challenge. But finding furniture, and stocking Ben's fridge, will be the easier part. How do I stay away from the fear: What if it's too much for him? What if, after seven careful years of building his life back up, this is too much independence, too soon?

What if Ben crashes? I try not to think this way, but it sneaks into my head when I'm not looking.

After seven years with the safety of all-day staffing, Ben will be on his own in so many ways. He is thrilled beyond belief. I am happy for him.  I am, also, scared. I want to believe that his recent accomplishments - doing so well in part-time college classes, landing and keeping this new job, racking up years now of sobriety - are proof that he is really growing up at last, chipping away at the years he lost when his illness was in the forefront.  I will behave as if I have complete faith in his ability to thrive in this new phase.  And maybe - just maybe - it will all work out wonderfully.

Ben has certainly earned this chance to prove himself. There is little I can do now except be happy for him, support his independence, and - between you and me - keep my eyes wide open for signs of relapse, and my arms and heart wide open to love and congratulate him.

Thoughts?

NAMI Family-To-Family: Happy 20th Anniversary

My son Ben is two weeks into a job. An actual job, with paychecks and everything. And by “everything”, I mean a reduction in benefits which almost wipes out the money he’s earning…but that’s another story. The main thing is that Ben is earning this money, and that feels completely different to him. The change in his self-esteem is astonishing. He has something to say when people ask him, “So what do you do?”

As the publication date of Ben Behind His Voices approaches,  I find myself thrilled that its launch will coincide with the 20^th Anniversary of NAMI’s Family-to-Family Program, because that is the course that saved my family by teaching me what I needed to know to cope with my son’s mental illness. NAMI helped me, and then I had the tools and the support to help my family – including, eventually, my son.

In January of 2002, I walked into my first F2F meeting – and I walked out completely changed. Although NAMI support groups had thrown me my first lifeline out of the hellish confusion of my son’s symptoms, I needed more. F2F was different from the support meetings in that it was a structured, once-a-week, course that was more educational in nature. In twelve weeks, I could learn about mental illness and its effect on the entire family, including the person who suffered from the illness.  This was taught by other family members who were trained by NAMI to implement the course. And – it was free.  All that was required was the commitment to attend all twelve classes, one evening a week, for 2 ½ hours each class.

What did I get?

Clarity.

Clarity can bring many other things along with it: Understanding. Mourning. Hope. Anger. Grief. Bonding.

This, I think, was a clearing of my future path to acceptance and action.  It was a start, and a glimpse.  Without this knowledge, I might very well still be fumbling blindfolded through the woods. Sometimes I still am – but since F2F, I always have an idea how to find the path once again.

The brilliant curriculum of F2F was designed by Joyce Burland, Ph.D a clinical psychologist whose experiences of coping with schizophrenia in her own family over two generations have deeply influenced her understanding of family trauma in mental illness.
This was a program written by someone who had been there, who had stumbled through her own journey as the mother of someone with a mental illness. Dr. Burland’s idea to educate the families in similar situations had initially been met with disbelief. Countless professionals said: “What do families need all that information for?” But she knew better, and persevered.  And now, the program has grown and keeps growing. 
Without revealing too much about the materials, which really must be experienced in the group setting that helps make it so affecting and valuable, I will tell you that there were many flashes of insight and realization that began to reshape my perspective. This process was not always easy.  In fact, it was never easy.  Most of that clarity came at a cost. Understanding teamed up with guilt.  Information came along with fear.  Changing my vision of the future brought anger and grief.
A lot of it was hard – very hard. But at least it was real. And I discovered that I was not the only one dealing with these issues, having these feelings.

Family-to-Family’s greatest gift was this: I stopped hating my son.  I learned new ways to cope, new ways to communicate with Ben. The course took us from painful realization to empathy for our relative’s experience and the hope that our families could someday absorb these new truths and progress to acceptance and advocacy.  But the only way to the final stages of emotional response was through the pain.  No shortcuts to the stage of acceptance.

There was so much I had learned. And still so much I didn’t know.

But now, armed with all this new and overwhelming information, I felt I could at least talk to the professionals on a respectable level. It empowered me. The class members  empowered each other.

In the past, I had been trying not to react.  Now, at least, I had some tools as to how to react, and some empathy for what life might be like for Ben.

I was going to need it all.  Many crises lay ahead in the next few years. Without NAMI, I don’t know how we would have survived it. Even with NAMI, I don’t know how we did it.

Happy birthday, Family-to-Family.

Mental Illness and Work: Capability, Dignity, Small Steps

Three hundred people showed up to a job fair this month for seasonal work at a local tourist attraction. Twenty people were hired, and one of them is my son Ben.  Why is this such a big deal? Because Ben hasn't been hired for a job in over eight years, since before his first hospitalization for schizophrenia. I am so overwhelmed with surprise and pride at this news that I realize I hadn't even dared to dream that this could happen yet for Ben.  In recent years, he'd begun to succeed in college part-time (the fact that he is starting to know what he can realistically handle is a huge step in itself.)

So much of Ben's growth in recovery has happened in these small steps that this huge leap into the work world scares me a little - yet I know (and keep reminding myself) that this is Ben's journey.  My questions - will this be too much stress for him? will he be able to wake himself up every morning when he has to get to work by 8:30? will his schoolwork suffer? - are ones I must keep to myself, and trust my son and his team of caseworkers to handle the answers without me.

But - over-riding all this is the wonderful pride I see in my son's eyes.  The value of having an actual job, of feeling useful, of being wanted for what you can offer: yes, indeed, priceless.  Ben, who while in the throes of the onset of his symptoms wrote that work was a "government plot designed to enslave us," has now changed his mind.  This week he wrote this:

If I were to give one piece of advice to the reader of this 'message', I would say that in order to get to where you want to be in life, what you have to do is walk the path.  Now, I understand that this probably sounds easier said than done, and - I won’t lie- it is. I now have goals for my life, and I must be willing to actually perform the steps that the goals require. One way to make this easier is to learn from one’s past, and embrace the lessons which will make walking the path easier. - Ben, 2011

A huge question, though, is one that no one on his team seems to be able to answer correctly - what, exactly, will be the effect of this minimum-wage job on Ben's benefits?His job coach says he is an "employment specialist", not a "benefits specialist," so he doesn't know. Ben's group home staff members ask his agency caseworkers, who ask their supervisors.  Wrong answers abound.Finally, I find some answers. Tips to help you, if you are in similar circumstances:

• There is a "benefits specialist" somewhere in the system.  Hunt and find.

• Social Security has a "Ticket to Work" program designed to help those receiving disability benefits as they take steps to self-sufficiency. Go to www.socialsecurity.gov/work for details

• There are different rules for SSDI, SSI, and any additional benefits you might get on a state level.

Ben is walking his path. Today. And someone has finally noticed - enough to hire him. I, as always, have my fingers crossed and my gratitude high. Having a job to go to is so the most amazing boost for Ben's dignity. Is it that way for you, or your relative with mental illness?

Ticket to Work: The Road to Self-Sufficiency, fingers crossed.

Ben has a chance at a job. A real job. Minimum wage, yes, but for him to make it to a second interview, and then to a possible job offer for the summer...well, the tears I feel remind me that I hadn't really even dared to dream this for him.  Ben hasn't had a job in eight years, since he was twenty years old.

He is so excited - it's the validation, the possibility he may be able to earn money, be useful, have something to say about his life other than "I live with roommates and do volunteer work" and - lately - "I go to school part-time", a miracle in itself .  He is also facing, suddenly, questions like:

• What will come up in a background check? Will the employer know about my hospitalizations and diagnosis?
• Will I lose my SSDI? SSI? State help? Medicare? Medicaid?
• What is a "Ticket to Work", and do I have one?
• Will I lose respect and the chance at this job if I reveal my diagnosis?

Practically, I was able to find answers by calling Ticket to Work, and by visiting the Social Security Work Website
The emotional questions are the ones that are more difficult to face
- but Ben is asking those questions, and setting his limits as to how much he wants to, or has to, reveal.  His dignity is so at stake; still, I'm amazed and proud at what he's doing: calling his job coach himself, contacting other so-called "experts", formulating exact answers to the questions that may come up.  He has more than risen to this occasion.  Again, the happy tears.

And the fears, which I am trying to ignore.

Will this be too much for Ben? Will he be able to get to work at 8:30 AM each day? Will the no-smoking rule cause problems for him, even though he says it is not an issue?  Will the stress cause a relapse? Shouldn't he take a lesser, part-time position?

But these are Ben's decisions, not mine,  All I can do is help with the research and share the information with him and his providers. Then let go. And have faith: faith that he can handle 32 hours of work each week, and still keep up with 6 college credits. And not break under the stress.

Nothing would make me - and Ben - happier.