Sheltered workshops, once considered a progressive alternative to institutionalizing the developmentally disabled, could soon be artifacts of a different era and philosophy.
New York State ended new admissions to sheltered workshops as of July 1, 2013, and will stop funding for them in 2020 -- the result of the state's April 2013 agreement with the U.S. Centers for Medicare & Medicaid Services (CMS).
This is part of the federal and state response to the U.S. Supreme Court's 1999 Olmstead ruling that those with disabilities work, live and receive services in the most integrated or typical setting possible.
That, the state has said, means that the developmentally disabled who can work should earn at least minimum wage -- which most workshops don't pay -- and receive coaching and support to work in jobs that are as competitive and mainstream as possible.
Eighty-four agencies in New York have sheltered workshops, four of them on Long Island, with about 8,100 participants, according to the state's Office for People With Developmental Disabilities. That's about 6 percent of the 130,000 people that OPWDD serves statewide.
By contrast, there are about 7,400 people with developmental disabilities receiving support and services from OPWDD who are competitively employed.
For some advocates, phasing out sheltered workshops is a long overdue victory for the developmentally disabled who, they contend, should not be paid a pittance to do often boring and repetitive work warehoused away from mainstream business and society -- all of which guarantee that they will never be self-supporting.
"From our perspective it's really a civil rights issue," said Jennifer O'Sullivan, OPWDD spokeswoman. "Everybody should have the opportunity to pursue competitive employment and earn at least minimum wage."
But others are worried it will mean that many developmentally disabled people -- who may require help walking, eating and/or using the toilet -- won't be able to find or keep jobs in a competitive work environment and will end up sitting at home or in day programs. Or, if they do find an "integrated" job, they will find themselves socially isolated, losing the close community of supportive, nonjudgmental friends they had at their workshop.
Visit to brother
Jim McEneaney, 67, of Sayville was visiting his brother Gerard, 56, on a Wednesday morning at the sheltered workshop in Westhampton Beach.
There, Gerard, born mentally and physically disabled, dismantles cable boxes five days a week alongside about 100 others in one of Association of Habilitation and Residential Care Suffolk's workshops, where he earns about $1.93 an hour, based on his production.
The two had just returned from a three-day cruise to the Bahamas. Jim McEneaney asked his brother whether he wanted to go on another one.
Gerard McEneaney waved his hand. "I've got to see," he said. "I've got work to do. I don't want to miss too much time."
Speaking of the proposed changes, Jim McEneaney, past president of the board of directors for AHRC Suffolk, choked up. "It all sounds very good and it may be well intentioned," he said. But, he said, "it tears me up" when he thinks about his brother losing his job.
"They talk about being 'integrated into the community.' What does that mean? What is out there? I don't see him gainfully employed at McDonald's. I'm not sure he would like that," he said. "More than that, he would be losing his meaning in life and his friends."
William Leonardi, chief executive of AHRC Suffolk, said about 400 are employed in the organization's three workshop sites and about 95 are working in the community in integrated jobs.
"Some do very well," he said of those in community jobs. "But there are stresses. It can be lonely and they can feel isolated. And, frankly, a lot of employers can't use them for 30 hours a week. They hire them and they end up working only eight hours a week."
The issue reflects a historic shift. Agencies such as United Cerebral Palsy and AHRC were started after World War II on Long Island by families that didn't want to warehouse their disabled children in institutions like the infamous Willowbrook State School on Staten Island, closed in 1987.
Instead, they established educational and employment programs as well as sheltered workshops. Most workshops pay less than the minimum wage, allowed under Section 14(c) of the U.S. Department of Labor's Fair Labor Standards.
Despite this, most workshops haven't historically made money and have relied on Medicaid for part of their funding. Leonardi said AHRC Suffolk loses $500,000 to $600,000 a year on its workshops.
United Cerebral Palsy Association of Nassau County closed its sheltered workshop in January after the organization was no longer getting state funds for it. That has left 120 people without paying jobs.
Many continue to work at UCP Nassau in various functions as volunteers, assistant executive director Karen Geller-Hittleman said, but they miss their pay checks.
In a letter sent June 12 as part of public testimony to U.S. Education Secretary Arne Duncan about regulations on subminimum wages and promoting competitive integrated work, UCP Nassau called closing workshops a "destructive action" that denies people choices.
"The system and the programs that currently benefit many are being dismantled," the letter said. "That system is being replaced with programs that will not work for the majority of individuals at UCPN."
The agency included statements from dozens of former workers, many of them like that of Sam Bishop, 45, who has an inherited neurological disorder called Charcot-Marie-Tooth Disease, spastic quadriplegia, scoliosis and mild mental retardation. He uses a wheelchair and is dependent on caregivers for all aspects of daily living.
"I loved working in the workshop," he wrote. "I liked having a pay check. It would be hard for me to get a job in the community because I need a lot of help with everything."
Patricia Caso, director of adult day services at United Cerebral Palsy of Suffolk, said many of the 30 individuals in its workshop face the same needs. She said the agency intends "to transition our individuals into community employment or volunteering."
"Some will be successful with supports, but a large majority of our individuals will not be able to transition due to their multiple disabilities and physical needs," she said.
But proponents of the change say many developmentally disabled people aren't being offered what one called the "dignity of risk," and don't have real choices if they aren't being trained for more than menial, repetitive tasks or aren't being energetically helped to find jobs in the community.
"I hear that argument all the time. 'If everybody's happy, why change it?' But part of that may be they don't know what the other options are," said Amy Scherer, staff attorney for the National Disability Rights Network.
Jennifer Monthie, a director at the nonprofit Disability Rights New York, said competitive employment was the way for people to become more empowered. It "assists individuals with disabilities to transition away from a social service system that keeps them in poverty and isolated from their community," she said.
Hector Rolon, program administrator of supported employment for AHRC Nassau, described two people who had worked in the sheltered workshop in Freeport for four to five years and had happily transitioned to part-time jobs assembling displays eight months ago.
"They're ecstatic," he said. "They're able to apply their skills in the real world and they take such satisfaction and pride in their work."
The integrated employment rate for the developmentally disabled is low nationally and even lower in New York. According to the Institute for Community Inclusion at UMass Boston, which collects the data, 18.6 percent of the developmentally disabled nationwide were working in integrated jobs in 2013; in New York that percentage was 13 percent, making it 11th from the bottom nationally.
The push for change is coming in large part from the federal government. Last July, President Barack Obama signed into law the Workforce Innovation and Opportunity Act to help job seekers, including those with disabilities, get services they need to obtain and keep jobs.
CMS makes federal funds available to states to transform the system to one that is more integrated and community-based. Hundreds of millions of federal funding to the state could be at stake if OPWDD doesn't comply.
For some advocates, the goals are laudable but they want to keep a range of options.
The Self-Advocacy Association of New York State Inc., a not-for-profit run by people with developmental disabilities, recently said it supported "the advocacy of people at all levels around workshop and employment transformation, including advocacy for continuation of current services. We need time and money to develop good options for people."
A 'centrist' approach
John Kemp, president of The Viscardi Center in Albertson, which trains people with disabilities for the workforce, called himself a "centrist" on the issue. He supports an aggressive effort to help people become employed. But, he said, that may not work for everyone.
"One size doesn't fit all," he said. "We should have a flexible and tolerant policy, more than just 'inclusion [in an integrated workforce] or nothing.'"
Some said they believe the issue is generational. "In a decade we won't be having this conversation," said Stephen Krown, senior director of employment and business development at AHRC Nassau. Krown said many younger disabled people have been mainstreamed throughout school and their expectation is to work and live in the community.
In the meantime, many agencies are scrambling to find a way forward. One option is to try to make the workshops more like real businesses that employ a mix of disabled and nondisabled people who earn at least minimum wage.
In 2009 AHRC Nassau started eWorks, which dismantles, recycles or refurbishes old computers and other electronic equipment using a mix of disabled and nondisabled employees at its Freeport site.
The enterprise has turned a profit, according to Mary McNamara, director of community resources of AHRC Nassau, although more people work in AHRC Nassau's typical sheltered workshop packing and assembling boxes than in eWorks.
AHRC's parent group, NYSARC Inc., and other agencies are working with OPWDD to develop "an integrated employment model" that will satisfy CMS requirements.
And Michael Seereiter, chief executive of the New York State Rehabilitation Association, a trade group for providers for services for the disabled, said his group is also working with a dozen agencies to help them come up with a new business model.
Although hopeful, Seereiter said the change is a challenge.
The 2020 deadline, he said, "is frankly an extraordinarily aggressive goal. You're talking about taking models that have been in existence for 40 years and calling for a full transformation to something different."
Krown was upbeat about the future but he too acknowledged the difficulties:
"How do we effect the change, yet preserve dignity and respect for those utilizing the services we have now? It's not to say one is better than the other, but how do you do that?"