黑料正能量 Note: This isn鈥檛 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鈥檛 always go as planned. Whether the disability is physical or psychiatric, we as a society cannot afford to confine those opportunities for anyone.
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A Couple Gaining Independence, and Finding a Bond
New York Times; Dan Barry, 10/4/2014:17
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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鈥檚 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.
鈥淚鈥檝e got them,鈥 she says. 鈥淒on鈥檛 worry.鈥
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听听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鈥檚 civil rights division, the State of Rhode Island agreed to help the workshop鈥檚 clients find employment and day services in the community 鈥 an agreement听听by a landmark consent decree that requires similar integrated opportunities for 2,000 other clients around the state, completely transforming Rhode Island鈥檚 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 鈥 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鈥檚 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.
鈥淭hat was a bad idea I had,鈥 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.
鈥楾hat鈥檚 My Soul Mate鈥
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鈥檚 one-bedroom apartment, two Special Olympics medals displayed on the wall behind her, as a family friend with a cosmetics bag enhances and conceals.
鈥淵ou鈥檙e looking gorgeous,鈥 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.
鈥淢y day,鈥 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 鈥淟ori鈥 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 鈥 and, most important, double-checking the D.J.鈥檚 playlist. It is vital that when Ms. Sousa makes her entrance, a particular song by Journey is playing: 鈥淒on鈥檛 Stop Believing.鈥
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.
鈥淚 said, 鈥業鈥檓 gonna marry that guy,鈥櫶 she says. 鈥淭hat鈥檚 my soul mate.鈥
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鈥檚 authorization after finding what it called 鈥渨illful violations鈥 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鈥檚 skills; to see oneself moving up, and on.
鈥淚鈥檇 be, like, 鈥業 want to go out,鈥櫶 Ms. Sousa says. 鈥淚 want to be trained for a job. Put me out there! I can do it!鈥
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 鈥 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 鈥渂ehavioral problems,鈥 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.
鈥淪he鈥檚 beautiful, she鈥檚 smart,鈥 Mr. Maxmean says. 鈥淥f all the women that I used to date, which we鈥檙e not getting into, I finally found the right one.鈥
A Bit of Panic
An anxious Mr. Maxmean is talking to the silvery door of a rising elevator. 鈥淥pen up, open up, open up,鈥 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, 鈥淥h, my God!鈥 over and over.
鈥淚t鈥檚 O.K., it鈥檚 O.K.,鈥 he says, pacing now. 鈥淵ou鈥檙e gonna go under the bridge and take a left …鈥
Mr. Maxmean resumes his run to the small apartment, chaotic with children, relatives and a bride-to-be still being powdered and beautified.
鈥淪he looks different,鈥 a young nephew says.
鈥淲here鈥檚 your veil?鈥 someone asks.
鈥淗ere you go,鈥 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.
鈥淒oes she look beautiful or what?鈥 she says. 鈥淚鈥檓 going downstairs to have a smoke.鈥
But Ms. Sousa鈥檚 gauzy white veil cannot mask her look of panic. 鈥淪it down for a minute, honey,鈥 Mr. Maxmean says. 鈥淪it down.鈥
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鈥檚 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听听was hired to help find rewarding employment 鈥 outside the building 鈥 for as many of the 88 clients as possible.
But many parents pushed back. They argued that the workshop鈥檚 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鈥檛 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: 鈥淲ho the hell are you?鈥
But Christine McMahon, Fedcap鈥檚 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鈥檚 motivation. But when Ms. McMahon promised to find Mr. DiDonato a rewarding job in six months, she says, 鈥淚 laughed in her face.鈥
Within six months, Louis DiDonato III, 23, was putting on a tie and driving himself to his clerical job, recalls Ms. DiDonato. 鈥淎nd I became a believer.鈥
Mr. DiDonato was among the 鈥渞ock stars,鈥 as Serena Powell, the senior vice president for Fedcap鈥檚 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 鈥渕ore hand-holding.鈥 Finding jobs for the rest will be 鈥渃hallenging but doable,鈥 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鈥檚 acting administrator of environmental care, has not forgotten the day she saw her new employee cleaning听under听the loading dock.
鈥淗e鈥檚 doing well,鈥 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鈥檝e worked too hard to get where you are. … One of the things that is NOT a disability is laziness. …Winners never quit 鈥 and you鈥檙e becoming a winner.
Then Mr. Maxmean passed his driver鈥檚 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. 鈥淚f I had met you a couple of years ago and you said, 鈥楽omeday you鈥檒l have a car,鈥 I鈥檇 say you were nuts,鈥 he says. 鈥淚t鈥檚 a blessing.鈥
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鈥檛 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: 鈥淢y fee. I need that. The payment before we start.鈥
鈥淏efore you start,鈥 Mr. Maxmean repeats.
鈥淪ure,鈥 Mr. Revens says. 鈥淥therwise, things get busy.鈥
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.
鈥淚鈥檝e spent everything else on the wedding,鈥 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鈥檚 no cash in it yet. So a couple of relatives cover the $200, including Mr. Maxmean鈥檚 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鈥檚 all there.
鈥淟adies and gentlemen,鈥 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鈥檚 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 鈥渉oneymoon suite鈥 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.
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