By Diane Boone and The Lancaster Patriot Staff
Going to work has often been viewed as mere drudgery, but after pandemic lockdowns forced so many people to stay at home because the government deemed their work “nonessential,” our society has developed a new appreciation for having a job to go to. A job can give people structure in their lives, opportunities to leave the house and see other people, a way to provide a valuable service to their community, and a way to develop skills over time.
Historically, many individuals who had physical or intellectual disabilities were unable to join the workforce, but Section 14C of the Fair Labor Standards Act created more opportunities for these individuals to enjoy the benefits of having a regular job. 14C does this by allowing employers to gain certification so that their employees can earn wages based on the amount of work they accomplish rather than being held to standards that would earn the usual minimum wage. This means more employers and organizations can provide paying jobs to individuals who are constrained in the amount of time they can work in a week, the speed at which they can do the work required of them, and the overall complexity of tasks they can handle.
However, the nationwide Employment First movement seeks to eliminate Section 14C and the type of work it allows. Proponents of Employment First policies and legislation contend that all people with disabilities should be employed out in the community — not in sheltered workshops, which the movement terms “segregated” — and that everyone should be earning no less than minimum wage no matter what.
Proponents of 14C, on the other hand, do not accept the idea that everyone can work in a competitive work environment or that everyone should be forced to participate in such a setting if they wish to work. The benefits of sheltered workshops outweigh any downsides for many individuals, since the facilities are designed specifically to serve people with physical or intellectual disabilities. Facility-based work programs provide ongoing training, support from specially trained staff, customized workstations, visual aids, accommodations for issues like sensory sensitivities, assistance with things like personal care and behavior management, and a wide variety of other supports. For people with significant disabilities, facility-based work could be their only opportunity for employment, since the environment accommodates their needs to a degree that a community-based workplace simply cannot achieve.
Many of the organizations that run such facilities provide a range of employment opportunities, both within the facility and out in the community. For instance, New Holland-based Lighthouse Vocational Services offers facility-based work that participants can excel in, and the organization also offers a variety of community-based jobs as well as opportunities for community participation, such as volunteering at nonprofits.
Brian French, the director of programs at Lighthouse, said in an interview with The Lancaster Patriot that one of his biggest goals throughout his career has been to shine a light on the value that people with disabilities have, even those who cannot fully integrate into the general society as employees. “I want to put folks with disabilities in visible spots, locations in the community,” he explained, “where people can see that there’s things they can do. That they’re not just sucking up tax dollars, and not just having their hand out for charity, for donations. That there’s things they can contribute, there’s things they can do. Back here, this happens every day. They’re in a ‘segregated’ setting, but they’re providing a valuable service to places like Alert-all Corporation, a company down the street that needs fire safety kits made. It’s a valuable part of their business. They need that done.”
At Lighthouse, plenty of the program participants are unable to engage in the competitive workforce but have found meaning in the work available to them in the tailored environment and joy in the fact that they too have earned money at their own pace, which has then enabled them to take part in the community in ways that other people do.
“Around Mother’s Day, one of our participants back here was so proud because she took her mom out for Mother’s Day lunch with money she earned in the facility,” French said. “If she couldn’t work in this facility, she wouldn’t work anywhere. Because she needs that level of support to do the work.”
Just like that participant was brimming with delight and told everybody that she had taken her mother out to lunch, those who work at Lighthouse take great pride in the work they accomplish. When Priscilla Eberly, Rep. Dave Zimmerman’s chief of staff, toured the facility, she was constantly approached by participants who wanted to show off their work to her. “They would say, ‘Come, look and see what I’m doing.’ They were so proud to put the packages together,” she told The Lancaster Patriot. “They were so happy. It gave them so much enjoyment. I know that their family members were happy because they knew that they were getting enjoyment out of it. And they were able to show that they earned some money. So it’s just an all-around win.”
Maintaining the availability of such opportunities, Eberly said, is something the government should support. “We talk about having a society that everybody is able to find their place in,” she pointed out, “but if you take away something like a 14C, the exemption, or facility-based services, then you’re taking away the opportunity for — actually, for these folks’ way of life. This is their way of life.”
French said that he believes the move away from 14C to community-based, minimum wage employment and the elimination of facility-based employment is an ideological move rather than one founded on the needs of people who rely on nontraditional work opportunities. Employment First, he said, is guided by the underlying philosophy that every person with a disability, no matter how severe the disability is, can hold a job in the competitive workforce if given enough of the right supports.
“Even if it’s only two hours a week, they consider that acceptable,” he explained. “We don’t. What happens the other 38 hours of the week? And what good is it if someone needs literal hand-over-hand assistance to do the job? Or the staff end up doing the job for the participant, but the participant is getting paid? There’s just so much about it that doesn’t make any sense. It’s completely driven by ideology. It’s the equity, inclusion, diversity. And those things have their place in society, but to me they’re now pushing it to an extreme, especially with those with disabilities.”
The idea of employment in the community at large makes sense at first glance, but it ignores realities on the ground, say those who are working to maintain 14C. In facilities like Lighthouse’s, not only are the participants surrounded by people who can understand their struggles best, but they are also in work settings that are adapted to meet their needs and help them improve their skills.
“So someone can only work to $5 an hour. Well, why can’t they just earn $5 an hour?” French asked. “If they’re happy with that, and their parents are happy with that, and that’s their choice, why can’t it be that?”
Individuals who have disabilities are not the only ones who will be impacted by the removal of 14C options, either. The end of facility-based jobs and programs will mean that more people with disabilities will be staying home instead of working, and this has a negative impact on their families. In states that have eliminated 14C and closed workshops and other facility-based programs, parents and other relatives who act as caretakers have increasingly been forced to quit their jobs and return home to take care of lower-functioning family members. Without sufficient access to professional caretakers or to programs like Lighthouse’s, people with disabilities who do not or cannot enter the competitive integrated workforce must be taken care of by family, resulting in families affected twice over: by the loss of streams of income and by the loss of flexibility and freedom. The government sometimes uses taxpayer dollars to try to offset the income sacrifice required, but that rarely makes up for the careers that are relinquished, and it does nothing to help our country’s currently strained workforce that needs all the employees it can get.
Furthermore, although parents give and give to their children, they are only human and they can only do so much. A parent being the sole caretaker can lead to immense stress, both for the parent and for the person being cared for. Having a single caretaker can lead to more behavioral flare-ups from the person with disabilities, French said, since they are with the same person all day, every day, and usually are stuck at home. These situations, when combined with the constant and often intensive care that severely disabled people require, can be very taxing on the families, especially if they are together all the time.
If there is no one else to help lighten the load, said Pam Wise, Lighthouse’s manager of quality assurance, compliance and innovations, then people can run out of energy to deal with problems, can run out of patience, and can find themselves overwhelmed. “Stress does a lot of things to people,” she said. “So they might react in ways that they don’t normally react.”
That makes it important for families to get breathing room, either through a professional caretaker who comes into the home to take over responsibility for a while or through the person with disabilities attending programs on their own for part of a day or week.
Even if a family does not feel that breaks are necessary, caretakers can accidentally hamper the development of certain skills. Since parents have limited time to handle family life, they are more likely to take charge of tasks to speed things along or to habitually intervene to help their children. Often when people with disabilities first come to Lighthouse, they and their caretakers don’t even realize how much they are capable of.
“In our vocational program, they can discover their abilities and interests,” Wise said. “After they discover them, the staff who work with them can say, ‘You know what, I think they could go out on small group employment and get work experience outside.’ And some people do that for six months and they decide, ‘Hey, I’m ready to get a job.’ Some are in it for six years or 10 years because they have self-limits, that they’re saying, ‘I can only work two days a week,’ or ‘This job works for me because it’s two hours every Thursday.’ Now, they can also progress from that, if they’re ready, to being employed in the community — directly.”
Without these facilities, many of which rely entirely upon the availability of 14C certifications, individuals with more severe disabilities would be displaced and sent home rather than going into the competitive workforce. Lighthouse witnessed this firsthand a few years ago when a local organization voluntarily closed its facility-based program and transitioned to community-only work. Lighthouse received a wave of new applicants because people who had been working in the facility program ended up being unable to transition to the more competitive programs and they needed somewhere else to go.
“They say this is segregated,” French said. “Well, what about someone sitting home with Mom all day? Isn’t that segregation?” Although Employment First insists that anyone can work in competitive integrated employment, ensuring everyone does get such jobs requires immense funds, an expansive pool of support personnel, and available roles that are suitable for lower-functioning individuals, as well as the willingness of individuals to participate in such employment. That means that in practice, too many individuals will be stranded at home. “It’s almost the equivalent of how they used to lock the person away in the attic or a closet,” French said. “Now they don’t lock them away, but they’re stuck at home. They’re segregated — they don’t get out.”
This problem was made clear in a 2015 case study from George Washington University’s Milken Institute School of Public Health, which investigated the outcome of Maine putting an end to sheltered workshop programs in the mid-2000s. Maine was one of the first states to enact Employment First laws and to eliminate state funding for work in facilities. Maine only allows state funds to support competitive integrated employment, which the state defines as a job where a disabled employee works alongside nondisabled employees for the same wage and with the same expectations of job performance. The case study showed that a significant number of individuals ended up staying at home once vocational programs were no longer available to them.
Wise explained that in Pennsylvania, the closure of vocational facilities is not the only reason one needs to worry about these individuals having nowhere to go. The state is planning to shut down two of the remaining four state-operated care centers for people with intellectual disabilities. The argument is that people should be living in a community setting, not a state institution, even if that institution was designed to give them a healthy, supportive place to engage with others. Although some people do transition successfully to private facilities or to shared living in private homes, others find themselves sequestered in very different institutions. Some land in nursing homes, but others wind up in jail because they lack the proper support they need and so end up making poor decisions.
French pointed out that in a time when we hear a lot about all kinds of equity — gender, racial and more — people know very little about individuals with disabilities and their voices are often drowned out in the scramble for what others perceive as equitable. Facilities throughout the country have been built to provide fulfilling work that is suited to the needs of people with intellectual and physical disabilities. In such facilities, they can complete work that is of value to their communities, and they can enjoy the meaningful employment that they have found — whether that employment is in a facility ongoing, or whether they use it to develop the skills to feasibly transition to competitive integrated employment. After all, the struggles that these individuals face are not simply about earning money or getting to participate like everyone else in society at large. Instead of Employment First being viewed as the only solution, resulting in the government boxing people in with well-meaning intentions, there should be a range of options and opportunities so that each individual with disabilities is free to make their own choice about how and where to work and spend their time.