Life as Jamie Knows It

by Michael Berube

  In the course of his education, as Jamie realized just how hard it is to master the basics of biology, he scaled back his hopes from “marine biologist” to “marine biologist helper.” And then he scaled back his hopes still further. When in spring 2007 we went over the IEP that would chart his way through high school, he was asked what he might do for a living when he graduated; dejectedly, he said, “Groceries, I guess.” It was a difficult moment for him, and for us. And I’m not sure what I would have felt that day if I had known that he would eventually have to settle for less than that.

  Through his high school and LifeLink PSU years, Jamie held a variety of part-time jobs, most of them on a volunteer basis. He trained in dog and cat care at PAWS; he ushered at the downtown State Theatre; he helped out in the children’s science museum; he stocked the shelves at the local food bank; he washed fire trucks for the Alpha Fire Company—itself a volunteer unit. And sometimes he got paid: he worked for minimum wage at one of the Penn State mailrooms (two days a week, two hours a day, transportation provided from high school), and in the summer of 2011 he worked a five-week stint at the Penn State recycling plant. That job paid $10.50 an hour for a four-hour shift, 9 a.m. to 1 p.m., and it was good thing the shifts didn’t run any longer than that because Jamie spent his first two weeks working outside in hundred-degree heat. In boots. And heavy gloves. And long pants. And a wet bandana around his forehead. His job coach, a genial British man, kept him hydrated and laughed as Jamie imitated his accent, mixing it with a more Northern inflection derived from Ringo.

  Jamie enjoyed all his jobs, and his coworkers and supervisors enjoyed working with him. He applied himself fully—he is no slacker—and he always took care to do his jobs right. In the mailroom, he took very seriously the fact that he was dealing mostly with care packages from parents to students, and he listened carefully when Janet and I told him how important it was to get the right letters and packages to the right people. “How are you doing with that?” I asked him after his first week. “Good,” he reported happily, then added, “Cursive is hard.”

  Praise for his good work means everything to him; money means almost nothing. Almost nothing, because he was definitely very happy with himself to be pulling down two hundred dollars a week at that recycling job. Today, he loves the fact that he has a checking account and a debit card, and that he’s able to buy himself lunch, snacks, Magic: The Gathering cards, and movie tickets. He is very generous—indeed, to a fault, as I discovered one winter when I bought a snowblower, went to get the car so that we could load it into the back of the Toyota RAV, and found that Jamie had paid for it in my absence. Six hundred dollars. I paid him back—and I told him that in the future, he will need my permission (or Janet’s) for anything over a hundred dollars.

  But after August 8, 2013, we were in new territory, speaking a new language. And that is what took us to the ICAP intake interview at the MH/ID BSU and then the series of CBWAs.

  Here’s what that means in English. The Mental Health/Intellectual Disabilities office (MH/ID), working out of the Base Services Unit (BSU), is a county-level agency overseen by Centre County. The ICAP is the Inventory of Client and Agency Planning, a long quiz and checklist designed to determine not only a client’s eligibility for services but also the degree of support he or she might need if he or she is determined to be employable. And the CBWA is the Community Based Work Assessment, by which it would be decided what kind of job Jamie might do. Jamie knows very well that the people in these state and county offices are trying to help him, and he is familiar with intake sessions and reams of paperwork thanks to his history of IEPs. Whenever Janet and I talked with Jamie about his employment prospects after the age of twenty-one, we assured him that he did not want to live a life of watching YouTube, wrestling videos, and Beatles Anthology DVDs in the basement. He always agreed; the idea of watching YouTube in the basement all day was preposterous. But the ICAP turned out to be a very difficult hurdle for him.

  It took about forty-five minutes. I talked Jamie through it and answered most of the questions for him (as I was supposed to do—I was not usurping his role). And as the process dragged on, Jamie became visibly depressed and withdrawn.

  First, the questions covered a very wide spectrum of behavior, including some quite severe symptoms of mental illness. They would start mildly—has this person ever been in trouble with the law? (No!)—and mount to a point at which they would begin to get scary: Has this person ever harmed someone? Has this person ever assaulted a police officer? (No! Certainly not! How ridiculous!) Since these were things that Jamie could not even conceive of doing, I could tell that he was starting to think, after about ten minutes, Is this my group? Are these the people like me? Worse still, far worse, were the multiple questions to which I had to answer yes. These weren’t disaggregated, so that at one point the exchange went something like this:

  MH/ID: Does this person talk to him/herself? Does this person hear voices? Has he/she had any episodes of violent behavior? Is he/she a danger to self or others?

  ME: Yes. [Jamie cringes.] He talks to himself. But he has never heard voices or become violent.

  I added, also, that he talks to himself because he is imaginative and creative, not because he is delusional. I did not add that he sometimes talks to himself because he is lonely.

  Jamie’s caseworker and the other MH/ID person left the room to tabulate the results and render an assessment of Jamie’s eligibility for “competitive employment,” which is to say, paid work. Jamie curled into himself on his chair. I had never seen him like this; even when he was sad about his brother or his hanging-out skills, he was engaged and feisty. Now he just seemed defeated.

  I came over to sit next to him and put my arm around his shoulders. “Jamie, sweetie,” I began, “you are such a wonderful kid, and I am so proud that you are my son. This is why I always say ‘Je suis très, très fier.’ Because I am. And it is OK to talk to yourself! You do, you know. You imagine entire conversations. Like last night, when you came upstairs, I could hear you saying, ‘And you know who else was born in Hawaii? Obama!’ ‘Really, Obama was born in Hawaii? How do you know that?’ ‘My father told me!’ ‘That is so cool.’ Right? You were thinking about talking to someone who was from Hawaii?”

  Jamie nodded dispiritedly.

  “Well, that’s totally fine,” I went on. “You know you are never violent and never mean—you are a good, good kid with a sweet, sweet heart. Everybody knows that. That is why everybody you have ever worked with, in school or at work, has liked being with you. You are funny and bright and full of ideas. And I am sure that when they come back, that is exactly what they will say. You would be a good employee. That test is really for people who have much more severe disabilities and mental illnesses that make them behave dangerously sometimes. It is not for you.” At this he seemed to cheer up a little, but it took the rest of the afternoon for him to fully recover. And the assessment was very much what I had expected: Jamie is not quite capable of living independently and needs help with various life tasks, especially with things involving small motor skills, but otherwise he is good to go, with appropriate supervision. He was cleared for a Community Based Work Assessment. Now all we had to do was to figure out what kind of job he might be able to do.

  That, indeed, was the hard part. What is Jamie capable of doing for a living? Our first checklist filled us with despair: factory work, nope; food service, nope (not fast enough); hotel maid service, nope; machine and auto repair, nope. (Though Jamie expressed interest in auto repair—not a moment of astonishing self-awareness.) With one agency, Jamie had two CBWAs followed by detailed five-page write-ups: one doing setup for conferences and meetings (tables, chairs, A/V), the other doing shelving at a supermarket. Neither went well. He had trouble stacking chairs, dealing with the duct tape for the A/V setup, and attaching skirts to tables. At the supermarket he had trouble with the U-boat, the device that carts dozens of boxes out into the aisles—and besides, they were only hiring o
n the graveyard shift.

  The result? For two months, it was basically YouTube in the basement for much of the day, as Jamie gradually realized (with what I think was a kind of horror) that we hadn’t been kidding about that part. Finally, the local sheltered workshop for people with disabilities, Skills of Central Pennsylvania, offered him an 8:30 a.m.–2:30 p.m. slot twice a week—and then three times a week. On top of that, I sent out a few e-mails and got him an afternoon of volunteering once a week, Wednesdays 3–5 p.m., at the children’s science museum.

  I was puzzled by the first CBWA. It seemed to me that the agency responsible for that one gave up on Jamie too easily. So he had trouble with his first attempt at conference setup—so what? Isn’t that precisely what job coaches are for, to supervise and assist their charges? Jamie could certainly learn how to stack chairs, peel duct tape, and attach skirts to tables. Peeved, I switched to another agency, which promptly set up a trial run for Jamie as a dishwasher in a local restaurant. I liked this trial better. Unlike the conference-setup CBWA, it wasn’t a one-off. Jamie had five or six stints as a dishwasher, accompanied by a job coach, and after one of them, he took his first solo taxi ride, handing the driver the note I had given him when I dropped him off:

  My name is Jamie Bérubé. Thanks for picking me up! I am going to Ihlseng Cottage—it’s on the Penn State campus, on Curtin Road just west of the Pattee/Paterno Library. My father works there. You can leave me off at the crosswalk. If there are any problems, my father’s cell phone is xxx–xxx–xxxx. Please add $5 to my fare for a tip. Thanks!

  That cab ride went well, but the dishwashing job did not. Jamie was in the way of his coworkers in the kitchen, and he wasn’t sufficiently attentive to detail when it came to the actual dishes. Needless to say, clean dishes matter to a substantially large percentage of people who go out to eat in restaurants, as well as to a correspondingly high percentage of people who own restaurants.

  So the decision that Jamie couldn’t do that job seemed legit. His second CBWA with this agency, though, was more vexing. They set up a six-month trial volunteering at the Y, doing janitorial work twice a week in two-and-a-half-hour shifts. If the trial went well, he would be hired. They liked him enormously at the Y, where many of the staff remembered him from afterschool and summer programs. And the agency job coaches very generously and carefully supervised him minute by minute. But after a six-month trial, he would have only five hours of employment per week? What was the point in that?

  We know many other parents in similar situations, who went through the bureaucratic gauntlet only to face the prospect of having their adult children placed in menial jobs for a few hours a week. Some have opted out of the system altogether; the parents of one exceptionally charismatic, capable young man with Down syndrome helped him get a full-time job in a restaurant kitchen, and the parents of another young woman helped her land a job in food prep at a lunch-and-smoothies place. Other parents of young adults with intellectual disabilities in our area of central Pennsylvania have begun to meet to see whether we can create our own programs to make better use of our children’s independent-living skills. One mother told me she had given up on the employment system altogether: “If the people whose job it is to get our kids jobs aren’t getting our kids jobs,” she asked testily, “why do they have jobs?” Another surmised that the job agencies were more invested in employing job coaches than in finding paid employment for the people served by job coaches. I find these remarks not merely cynical but ungenerous; I have a good working relationship with the people who work with Jamie, and I know that they are doing their best for him and for dozens of people like him. They are frustrated not by their clients but by local employers, who are often bafflingly inflexible when it comes to hiring people with intellectual disabilities. Trader Joe’s, for example, is an enterprise many liberal-lefty people like: it has all the arugula and multigrain baguettes and aromatic cheeses and frozen masala burgers we need. But our local store will not hire people with intellectual disabilities as baggers, on the grounds that every Trader Joe’s employee should be trained in every possible area. Still, I understand these parents’ complaints, even if they are misdirected. I had to admit that the CBWA at the Y didn’t seem designed to get Jamie a meaningful job with substantial working hours. And then, a few weeks later, after Jamie nearly injured his fingers in a vacuum cleaner (I wonder whether this was the counterpart to his foot-in-the-indoor-track moment), the Y trial was ended. Jamie still did not have competitive employment. He had two hours of volunteer work and three days in the sheltered workshop during the week, and a morning of volunteer work at the animal shelter on Sundays.

  Jamie takes public transportation to and from the workshop. He loves riding the bus by himself; not everyone who works at Skills can do that. He loves being a commuter and being punctual. As I write, more than two years after he started, Jamie has never been late to work. Occasionally he has companions whom we pay to hang with him for a couple of hours at a time. It is a life, and he is happy with it; I ask him about that regularly. Though it is not the life we—and he—wanted to imagine for him. We have visited a Camphill community in southeastern Pennsylvania, where adults with intellectual disabilities live in their own villages (with supervisors and assistants) and practice various trades, from textiles to dairy farming. But Jamie is not interested, and if he is not interested, then his parents are not interested.

  Janet and I have followed the debate about sheltered workshops, in which nonprofits and charitable organizations (such as Goodwill, the subject of a 2013 investigative report by NBC’s Rock Center) pay their disabled workers a tiny fraction of the minimum wage. Jamie makes about $1.30 an hour. These workshops are a relic from the 1930s, when people with disabilities were segregated from the general population—and a time when it was not considered problematic to exempt such people from the nation’s new minimum-wage laws. (The relevant law is the Fair Labor Standards Act of 1938.) Jamie does piecework there, most often involving the packaging of various vials or hardware. And thanks to his Supplemental Security Income of about $450 per month, he has enough money to buy himself lunch, snacks, Magic cards, movie tickets—and the occasional T-shirt or DVD. A snowblower is really out of his range.

  Obviously, if Jamie had to support himself, he could not do it: that is the point of the protests against sheltered workshops, a point that is all the sharper for people with disabilities who are not living in their relatively well-off parents’ houses. But for now, that workshop is almost all he has. He does not mind the repetitive, sedentary, and intellectually un-stimulating nature of the work. He likes the workplace, and he likes his coworkers. He comes home cheerful every day, happy to be a commuter, happy to be a bit more independent from his parents.

  And his supervisors at the workshop, for their part, are keen and sympathetic observers/recorders of Jamie; their accounts of his strengths and weaknesses are bracingly accurate. Here is an excerpt from their June 25, 2015, report on Jamie—specifically, their responses to 055 Pa. Code § 2390.151(e)(1) and § 2390.151(e)(2), dealing with the assessment of clients in vocational facilities:

  Jamie is a delightful, ambulatory, verbal 23 year-old young man. He began attending the Skills VT [Vocational Training] 10/24/13 at 2 days a week and increased to 3 days a week beginning 1/20/2014. He also began participating in the community exploration program in January, 2014. He is friendly and polite, although there are times when he will choose not to respond to greetings or questions. Jamie has been willing to try any task asked of him and he cares very much about the quality of his work. He asks for periodic reassurance that the work he is doing is correct and he does need periodic oversight, particularly when initially learning a new task. Most of the work tasks he has learned he has mastered and he is able to remember how to complete the steps over time.

  . . . When asked what his “dream” job would be, Jamie responded that he would love to work at Ace Hardware and/or carry heavy supplies at Lowe’s. He would be interested in doing con
struction, plumbing, or electrical work. He mentioned that he would like to work at a supermarket, stocking shelves or bagging goods. He would consider working in a restaurant, doing dishes or delivering food to people. He would be interested in learning to do automotive work and change tires. He mentioned enjoying moving boxes around and some interest in learning to use a floor jack or fork lift to move objects. He mentioned that he really, really enjoys organizing things and would enjoy work tasks involving organization such as in a video section in a retail store where he could “organize, move things around and make things fit.” Jamie seems to have an amazing memory for detail within subjects he enjoys (such as geography, the counties in Pennsylvania, sharks, movies, music, etc.). This talent would naturally lend itself to being very helpful on a job site requiring such attention to detail.

  I was surprised by this report, and asked Jamie specifically about his ideas about working in construction as a plumber or electrician—that requires a great deal of training, you know—and the bit about working on cars and changing tires, or operating heavy machinery. Where did that come from? As for his organizational skills: on that topic, his self-knowledge was far more grounded. But I felt a twinge of sadness at the idea of Jamie organizing the video section of a retail store, just as I would feel if he had expressed a desire to organize the eight-track-tape collection at Columbia Records. And I was stunned that the category of “animal care” scored so low in his responses. Jamie’s explanation? “I do that already.”