For Hire: Dedicated Young Man with Down Syndrome

Jamie is my son. He is 22 years old. He is a bright, gregarious, effervescent young man with an amazing cataloguing memory and an insatiable intellectual curiosity about the world — its people, its creatures, its nations, its languages and (perhaps most of all) its culinary traditions. If it were possible for him to travel everywhere on the inhabited globe, he would do it, and he would try to ingratiate himself with his hosts, just as he does when he greets the owner of our local Indian restaurant by bowing, hands clasped, and saying "namaskar." (The owner, Sohan, is delighted by this.) Since graduation, he has been looking for work. Jamie also has Down syndrome.

The first time I talked to Jamie about getting a job, he was only 13. But I thought it was a good idea to prepare him, gradually, for the world that would await him after he left school. My wife, Janet, and I had long been warned about that world: By professionals it was usually called "transitioning from high school." By parents it was usually called "falling off the cliff." After 21 years of early intervention programs for children with disabilities; a "free appropriate public education in the least restrictive environment," as mandated by the Individuals with Disabilities Education Act; local after-school programs; the LifeLinkPSU initiative that allows high school graduates with intellectual disabilities to take appropriate Penn State classes — after all that, there would be nothing. Or so we were told.

At 13, Jamie reported that he wanted to be a marine biologist. A very tall order, I thought; but he knew the differences between seals and sea lions, he knew that dolphins are pinnipeds, and he knew far more about sharks than most sixth graders. And despite his speech delays, he could say "cartilaginous fish" pretty clearly. Perhaps he could work at an aquarium?

Over the course of the next few years, as Jamie realized (thanks largely to a very disability-friendly seventh-grade science teacher) just how hard it is to master the basics of biology, he scaled back his hopes. He knew he was having trouble naming all the parts of a cell, just as he knew that he could not account for all the components of the gastrointestinal tract. Even in biology class, though, he had some goalpost-moving moments. His teacher had very kindly “adapted” the tests and quizzes for him so that, for instance, he only had to name half the parts of a cell and half the GI tract. (I wondered: When, between the ages of 12 and 21, do the legions of his nondisabled peers forget about vacuoles and mitochondria?) So when we were doing his homework one night, I said, "We can skip the pancreas; I don't think you know that one." And he replied, "Lucy the dog had pancreatitis and cannot eat spicy food." OK, I thought, maybe you do know about the pancreas. My bad. Goalposts duly adjusted.

By the end of the year, though, Jamie had lowered his sights from "marine biologist" to "marine biologist helper." And by the end of eighth grade, when we met with all his teachers and aides and paraprofessionals to go over the Individualized Education Program that would chart his way through high school (good news: the high school French teacher agreed to have him in French 1 for two years and French 2 for two years!), when he was asked what he might do for a living when he graduated, he said dejectedly, "Groceries, I guess."

I'm not sure what I would have felt that day if I had known that he would have to settle for less than that.

When he was about 11 or 12 years old, I told Jamie that if he ever was sad or worried or confused, he could always talk to me. At the time, he blew me off: He was not sad! But he has spoken to me a few times since then — about the time he was feeling that he does everything wrong; about the time he thought French was too hard for him (it was not, in the end); about the time he was crestfallen that his big brother Nick wasn't coming home for his (Nick's) birthday; about the time I told him he could hang out with Nick's friends during some holiday get-together and 10 minutes later he returned, saying gloomily, but with astonishing self-awareness, "I don't know how to hang out."

Through his high school and LifeLinkPSU years, Jamie held a variety of part-time jobs, most of them on a volunteer basis. He trained in dog and cat care at a local animal shelter; he ushered at the downtown theater; he helped out in the children's museum; 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 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 100-degree heat. In boots. And heavy gloves. And long pants. 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 loved all his jobs, and his co-workers and supervisors loved him; he is, after all, bright, gregarious and effervescent. He was also very proud of his work, so much so that I taught him two new words to describe himself: "diligent" and "conscientious." 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 mostly getting 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 chirped, 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 $200 a week at that recycling job. Today, he loves the fact that I (finally) got him a checking account and a debit card, and he is able to buy himself lunch, snacks, Magic cards and movie tickets.

Jamie graduated from LifeLinkPSU on April 25, 2013. He remained eligible for services, including the LifeLink apartment — where three young men or women with intellectual disabilities live for one week at a time with a 24/7 coach — until August 8, 2013. After that would come the transition, the cliff. And that is what took us to the ICAP intake interview at the MH/ID BSU and then the CBWA. Here’s what that means.

The Person/Family Directed Support (PFDS) Waiver is administered by the Pennsylvania Department of Public Welfare (DPW); it pays for an array of services for people with intellectual disabilities, ranging from assistive technology to companions and transportation. Jamie's waiver, worth $30,000 per year in services (we doubt we will come anywhere close to that amount), was approved in October.

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, where we live. 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 he has a disability, and he identifies readily with his "group" — the couple dozen adults and young adults with intellectual disabilities in Centre County. He knows that these people in these state and county offices are trying to help him, and during his school years he became thoroughly familiar with the Individualized Educational Program drill, where any number of professionals would meet with him and his parents to go over a ream of paperwork. Whenever we talked about his employment prospects after the age of 21, we reminded Jamie 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 was preposterous. But the ICAP turned out to be a very difficult hurdle for him.

It took about 45 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 10 minutes, is this my group? Is this the category to which I belong? 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.

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" (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 always 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 tres, tres 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 sullenly.

"Well, that's totally fine. 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 enjoyed 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: He 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 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 graveyard shift.

The result? For two months, it was basically YouTube in the basement, as Jamie gradually realized (with what I think was a kind of horror) that I hadn’t been kidding about that part. Finally, the local sheltered workshop for people with disabilities offered him an 8:30-2:30 slot twice a week — and then three times a week. On top of that, I sent out a few emails and got him an afternoon of volunteering once a week at the children’s museum. And most recently, another agency 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 goes well, we are told, he will be hired. They like him enormously at the Y. The only question is whether he will learn how to do the vacuuming, sweeping and cleaning on his own; right now, the people at his agency are very generously and carefully supervising him minute by minute.

Jamie takes public transportation to and from the workshop. He loves riding the bus by himself; not everyone who works at the shelter can do that. He loves being a commuter and being punctual: In six months, Jamie has never been late to work. Twice a week, he has a companion whose time is paid for by the PFDS waiver; twice a week, we pay other companions 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 regularly. Though it is not the life we — and he — wanted to imagine for him.

We are very aware of the debate about sheltered workshops; many nonprofits, charitable organizations and sheltered workshops pay their disabled workers a tiny fraction of the minimum wage. They are, of course, a relic from another time, a time 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 minimum-wage laws. Jamie does piecework there, most often setting up vials for the collection of hazardous materials (which he does not collect himself). He makes about 8 or 10 dollars a week. Together with his Supplemental Security Income (from the branch of Social Security that provides for adults with disabilities) 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.

Needless to say, if he 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 and intellectually unstimulating nature of the work; he comes home cheerful every day, happy to be a commuter, happy to have co-workers, happy to be a bit more independent from his parents.

This winter, I had occasion to take Jamie to the Shedd Aquarium in Chicago, and could not help noticing that they was looking for volunteers. For Jamie, that would amount to a dream job, pay or no pay. Perhaps the sheltered-workshop aspect of his life is partly my fault, for not arranging our family in such a way that we could live in a city that has an aquarium.

I knew Jamie would not grow up to be a marine biologist. And I know that there are millions of non-disabled Americans out of work or underemployed, whose lives are less happy than Jamie's. I don’t imagine that he has a "right" to a job that supersedes their needs. But I look sometimes at the things he writes in his ubiquitous legal pads when he is bored or trying to amuse himself — like the page festooned with the names of all 67 Pennsylvania counties, written in alphabetical order — and I think, isn’t there any place in the economy for a bright, gregarious, effervescent, diligent, conscientious and punctual young man with intellectual disabilities, a love of animals and an amazing cataloguing memory and insatiable intellectual curiosity about the world? ◆