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  Most of his benefits were withdrawn almost as soon as he received that first paycheck.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?

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.

Mental Illness and Work: Capability, Dignity, Small Steps

Three hundred people showed up to a job fair this month for seasonal work at Connecticut's only zoo. 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?

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