NYAPRS Note: This isn’t the typical news story about a closed institution. Many such exposes discuss a (very real) lack of community services, over-eager regulators or legislators, and disenfranchised community members. Under pressure to achieve Olmstead, government agencies should remember that affording any person a meaningful life in the community is about offering a chance for the joy, pride, and humility experienced in activities like picking out a wedding song, buying a first car, and dealing with things when they don’t always go as planned. Whether the disability is physical or psychiatric, we as a society cannot afford to confine those opportunities for anyone.
A Couple Gaining Independence, and Finding a Bond
New York Times; Dan Barry, 10/4/2014:17
A Sunday wedding that was months away, then weeks away, then days away, is now hours away, and there is so much still to do. The bride is panicking, and the groom is trying to calm her between anxious puffs of his cigarette.
Peter and Lori are on their own.
With time running out, they visit a salon to have Lori’s reddish-brown hair coiled into ringlets. They pay $184 for a two-tier cake at Stop & Shop, where the checkout clerk in Lane 1 wishes them good luck. They buy 30 helium balloons, only to have Peter realize in the Party City parking lot that the bouncing bobble will never squeeze into his car.
Lori, who is feeling the time pressure, insists that she can hold the balloons out the passenger-side window. A doubtful Peter reluctantly gives in.
“I’ve got them,” she says. “Don’t worry.”
Peter Maxmean, 35, and Lori Sousa, 48, met five years ago at a sheltered workshop in North Providence, where people with intellectual disabilities performed repetitive jobs for little pay, in isolation. But when a federal investigation turned that workshop upside down last year, among those tumbling into the daylight were two people who had fallen in love within its cinder block walls.
A Measure of Independence
Working with the Department of Justice’s civil rights division, the State of Rhode Island agreed to help the workshop’s clients find employment and day services in the community — an agreement followed up this year by a landmark consent decree that requires similar integrated opportunities for 2,000 other clients around the state, completely transforming Rhode Island’s sheltered-workshop system.
The decree has put the 49 other states on notice that change is coming: that in the eyes of the federal government, sheltered workshops can no longer be default employment services for people with disabilities — most of whom can, with support, thrive in the workplace.
Mr. Maxmean and Ms. Sousa are among dozens of Rhode Island residents who are seeking their place beyond the safe but stultifying island of a sheltered workshop. At the moment, though, these two are pulling away from Party City with wedding balloons bobbing out their car window.
The first balloon slips Ms. Sousa’s grasp as soon as Mr. Maxmean begins to drive. Then another escapes, and another, and another, floating beyond reach. By the time they pull up to their subsidized apartment building, a deflated Lori is clutching just six balloons.
“That was a bad idea I had,” Mr. Maxmean gently tells her, even as he quietly calculates the loss of 24 helium balloons at 90 cents apiece.
But the two have no time to fret over lost balloons. Invitations went out weeks ago for the wedding of Lori Sousa and Peter Maxmean at the Harbor View Manor, East Providence, Rhode Island, at 5 p.m. on Sunday, the 17th of August.
Today.
‘That’s My Soul Mate’
With an hour to go, Ms. Sousa fusses into the white gown purchased for a good price at Gown Town in Warwick. But her white high heels, bought for $15.99, already hurt; she wonders about wearing socks.
Soon she is sitting with eyes closed on the couch in the couple’s one-bedroom apartment, two Special Olympics medals displayed on the wall behind her, as a family friend with a cosmetics bag enhances and conceals.
“You’re looking gorgeous,” the friend coos, as cellphones ring, people shout and Buddy the cat hides. But in this moment, Ms. Sousa seems to have achieved inner calm.
“My day,” she says to herself.
Four floors below, Mr. Maxmean is setting up in the community room, where the wedding and reception are to be held. With his sleeveless T-shirt revealing the “Lori” tattoo on his left biceps, he is a wedding-day whirligig, pushing aside the bingo machine, testing the half-frozen lasagna in the oven, unboxing the tilted wedding cake — and, most important, double-checking the D.J.’s playlist. It is vital that when Ms. Sousa makes her entrance, a particular song by Journey is playing: “Don’t Stop Believing.”
Ms. Sousa remembers when this new guy at the workshop, tall, brown-haired and with glasses, joined the repackaging of remote-control devices for a contract with Cox Communications. She was removing the batteries, he was testing the remotes, and something just clicked.
“I said, ‘I’m gonna marry that guy,’ ” she says. “That’s my soul mate.”
Ms. Sousa was a workshop veteran by then. Born in Portugal and raised in Providence, she had spent the 25 years after high school commuting to the Training Thru Placement workshop, a squat, ugly building hidden away in a residential neighborhood.
She and the other clients would work at their own pace to fulfill various contracts: packaging heating pads; recycling television remotes; jarring Italian specialty foods. The pay averaged about $1.57 an hour.
Federal law allows authorized agencies to pay subminimum wages to people with disabilities, based on their performance when compared with that of a nondisabled worker. But the Department of Labor later revoked the workshop’s authorization after finding what it called “willful violations” of the law, including the failure to record and pay employees for all the hours they worked.
Also problematic was the general absence of encouragement to improve one’s skills; to see oneself moving up, and on.
“I’d be, like, ‘I want to go out,’ ” Ms. Sousa says. “I want to be trained for a job. Put me out there! I can do it!”
At one point the workshop did help her find a job at an Italian restaurant in Cranston. But she clashed with co-workers, stopped going to work — and back she went to that hidden-away building, packing, wrapping, answering the telephone.
Then Mr. Maxmean appeared one day, and he was different. For one thing, he listened to her.
Mr. Maxmean was raised from the age of 3 by a nurse at the Rhode Island Veterans Home who fostered several children. Although he attended a special needs school in Bristol, his true education came from the many trips and cruises taken with his foster mother. He has been to every state but Hawaii, which remains in his sights.
But Mr. Maxmean had what he calls “behavioral problems,” among other issues. After spending time in and out of various hospitals and institutions, he wound up in a heavily supervised group home in Smithfield, where a van took him every morning to the workshop, and to Ms. Sousa.
“She’s beautiful, she’s smart,” Mr. Maxmean says. “Of all the women that I used to date, which we’re not getting into, I finally found the right one.”
A Bit of Panic
An anxious Mr. Maxmean is talking to the silvery door of a rising elevator. “Open up, open up, open up,” he says, sounding very much like a man getting married in a half-hour.
The door finally obeys. He sprints toward the apartment he moved into four years ago, only to stop short when his cellphone rings. The guest who has the soda for the reception is lost in Providence, and she is shouting, “Oh, my God!” over and over.
“It’s O.K., it’s O.K.,” he says, pacing now. “You’re gonna go under the bridge and take a left …”
Mr. Maxmean resumes his run to the small apartment, chaotic with children, relatives and a bride-to-be still being powdered and beautified.
“She looks different,” a young nephew says.
“Where’s your veil?” someone asks.
“Here you go,” Mr. Maxmean says, veil in hand.
Dressed in a white tuxedo with a royal blue vest, Mr. Maxmean does a quick dance in his rented white shoes before hurrying to the bathroom to shave. By now, the family friend is packing up her cosmetics.
“Does she look beautiful or what?” she says. “I’m going downstairs to have a smoke.”
But Ms. Sousa’s gauzy white veil cannot mask her look of panic. “Sit down for a minute, honey,” Mr. Maxmean says. “Sit down.”
Ms. Sousa regains her composure and rises to leave, but those shoes are just killing her. Then someone points out that the wedding is already 15 minutes behind schedule.
Mr. Maxmean just shrugs, and says something about life not always being on time.
Disruption, Then Placement
One morning early last year, as Ms. Sousa sat at Training Thru Placement’s reception desk, armed federal law enforcement agents came through the front door. A Justice Department investigation into civil rights abuses was underway.
Everything changed. Some staff members disappeared, the piecework ended, and a nonprofit organization called Fedcap was hired to help find rewarding employment — outside the building — for as many of the 88 clients as possible.
But many parents pushed back. They argued that the workshop’s established routine had provided their children with a safe place to be, among friends.How will you protect my son from being bullied again? How will you make sure that my daughter isn’t ridiculed again?
The abrupt redirection infuriated a mother named Lori DiDonato. After many disappointments, she and her husband had finally found a place that their young adult son, Louis, enjoyed, and now some outsiders were taking that place apart. Her central question: “Who the hell are you?”
But Christine McMahon, Fedcap’s president, challenged Ms. DiDonato with a question: How would she feel if she did the same job, with the same people, at the same place, for the same inadequate pay and with no advancement, for her entire career?
In that moment, Ms. DiDonato says, she began to understand the government’s motivation. But when Ms. McMahon promised to find Mr. DiDonato a rewarding job in six months, she says, “I laughed in her face.”
Within six months, Louis DiDonato III, 23, was putting on a tie and driving himself to his clerical job, recalls Ms. DiDonato. “And I became a believer.”
Mr. DiDonato was among the “rock stars,” as Serena Powell, the senior vice president for Fedcap’s New England offices, puts it: the first 20 or so clients who easily found enjoyable, fulfilling jobs. The next 20 also did well, she says, although they needed “more hand-holding.” Finding jobs for the rest will be “challenging but doable,” she says.
Mr. Maxmean, who is considered a rock star, quickly got a $15-an-hour custodial job at the state psychiatric hospital in Cranston. Although he has had some difficulty adapting to the requirements of a full-time job, he is a hard, focused worker. Kellie Capobianco, the hospital’s acting administrator of environmental care, has not forgotten the day she saw her new employee cleaning under the loading dock.
“He’s doing well,” Ms. Capobianco says.
Mr. Maxmean initially took a 10-mile bus ride to his job, adding hours to his workday and uncertainty to his weekends, when buses run sporadically. On some weekends, though, Jim Manni, a Training Thru Placement job coach, would drive 25 miles, on his own time, to deliver Mr. Maxmean to work, all the while imparting advice about expectations beyond the workshop.
You’ve worked too hard to get where you are. … One of the things that is NOT a disability is laziness. …Winners never quit — and you’re becoming a winner.
Then Mr. Maxmean passed his driver’s test. He put $800 down and drove off in a $5,000 Sonata with nine years and 156,000 miles on it. The thought of shopping for food without having to lug bags onto a bus was so exciting that when he and Ms. Sousa loaded groceries into the car trunk for the first time, they took photographs.
Now, if he has the gas money, Mr. Maxmean drives anywhere he wants: to his job, to the store, to the grave of his foster mother, who died two years ago. “If I had met you a couple of years ago and you said, ‘Someday you’ll have a car,’ I’d say you were nuts,” he says. “It’s a blessing.”
Mr. Maxmean often drove Ms. Sousa to her $8-an-hour job at the Hampton Inn in Warwick, which followed a brief employment at a Panera Bread. But she struggled with the expectation of cleaning a room in less than 30 minutes. After skipping two successive Sunday shifts, she was told not to come back.
This isn’t unexpected, Ms. Powell says. Some people just take longer to find their niche.
Ms. Sousa is back in the job market, looking for something in food services. But right now her most pressing appointment is with a justice of the peace.
Getting It Together
Mr. Maxmean suddenly realizes that the marriage license is in his car and his car keys are in the apartment he has just left. Back up, back down and out the door he goes, a white-tuxedoed blur.
With the wedding nearly a half-hour late, and the hum of anticipation emanating from the common room, Mr. Maxmean presents the license to Dennis Revens, the black-robed justice of the peace, who says: “My fee. I need that. The payment before we start.”
“Before you start,” Mr. Maxmean repeats.
“Sure,” Mr. Revens says. “Otherwise, things get busy.”
At this moment, Mr. Maxmean does not have that $200. Even though he has greatly modified his once-grand wedding plans, canceling the church-hall rental and the catered meal, he is still learning to budget. The wedding dress, the tuxedo rental, the cake and the shoes, among other expenses, have left him short.
“I’ve spent everything else on the wedding,” he mutters, while a few neighbors in the lobby sit, listen and watch.
Mr. Maxmean asks a friend to check a white gift box, on prominent display in the reception hall, but there’s no cash in it yet. So a couple of relatives cover the $200, including Mr. Maxmean’s birth mother, who tells him not to forget that he owes her $95.
The justice of the peace counts out the $20 bills like a winner at the track. It’s all there.
“Ladies and gentlemen,” intones the disc jockey, and guests rise to their feet in a room normally reserved for card games and bingo nights. Here are relatives, and co-workers, and people from the workshop, including Mr. Maxmean’s job coach, a smiling Mr. Manni.
Mr. Maxmean walks slowly down the white-paper runner he unrolled hours earlier. He hits his mark and turns to see Ms. Sousa, resplendent in white and smiling through the pain of those shoes.
Later, Mr. Maxmean will hear the $200 justice of the peace flub the vows by referring to Lori as Lisa. Later, he will call in an order for four pizzas to supplement the lasagna. Later, he and his bride will retire to their “honeymoon suite” upstairs.
But right now, the eyes of the man in the white tuxedo are wet, as the makeshift reception hall fills with a stringed version of that song by Journey.