First published November 4, 2011.
As the founder of the Asperger Syndrome Training & Employment Partnership (ASTEP), I hear from many parents about the struggles their adult children have obtaining and retaining employment. As the parent of a young man with an autism spectrum disorder (ASD), I know that the anguish parents feel is well founded.
In a 2008 study of 200 families with transition age and adult children with an ASD conducted by the University of Miami/Nova Southeastern University Center for Autism and Related Diseases, 74% of the respondents were unemployed and 74% of those employed worked less than 20 hours a week. Most studies indicate that 75-85% of adults with Asperger Syndrome do not hold a full-time job.
From the time our children are diagnosed with an ASD, we juggle the roles of parent, advocate and protector. We campaign for appropriate educational, medical and social services, while defending our children’s rights to be treated with the same dignity as their neurotypical peers. We are the founders of organizations, the promoters of awareness, and the educators of other families, friends and people touched by autism. We do everything possible to help our kids reach adulthood … and then we start again.
The United States Department of Labor (DOL) data reports that almost 154 million Americans over the age of 16 were employed in August 2011. More importantly, the DOL reported in their 2010 Employment Characteristics of Families that among the approximately 35 million families with children under the age of 18, over 87% had at least one employed parent. If you include the parents of children over the age of 18 who are still dependent on their parents, this number obviously grows. Yet how many of us advocate with our employers to include individuals with autism in their work force? As employees we can take our role as advocate into our workplaces by participating in, or establishing Employee Resource Groups on autism/disability. We can educate ourselves and our employers about the benefits of hiring individuals with autism and how to successfully recruit and retain employees with an ASD.
Strength in Numbers
At ASTEP we talk to employers about the market share advantage they can tap into by employing adults with autism. We show them how the estimated 1.5 million individuals in the U.S. with an autism spectrum disorder diagnosis can mean over 10 million consumers when you include parents, siblings, grandparents, aunts and uncles. That translates into over 3% of the US population. In addition, the vast majority of families with a child on the autism spectrum have at least one parent, grandparent and aunt or uncle who is employed. If we eliminate underage children and retired grandparents, then apply the DOL statistic to the remaining estimate of 7 million people closely related to an individual with autism, we have over 6 million individuals who can each be an advocate with their employer. Less than 25% of those individuals would have to be successful in creating one job for one individual on the autism spectrum to employ the entire diagnosed population of 1.5 million people over time. Imagine a zero percent unemployment rate among individuals with autism.
Changing the Employment Landscape
Of course, this is a rather simplistic view. If it were this easy, we know that the parents of children with autism would already have convinced their employers to create those jobs. Yet a real opportunity exists today for parents of children with autism to change the employment landscape for existing and emerging adults with autism. We’ve all read about the exemplary parent inspired programs established by Walgreens and TIAA-CREF, and the parent founded companies Aspiritech and Specialisterne. But not everyone is in a position that allows them to drive such an initiative with their employer or has the resources to establish their own company. Yet all of us can advocate in our place of employment in a number of ways:
Talking Points for Employees
It was already pointed out above that over 3% of the U.S. population is touched in some way by autism. Not only is this important from the perspective of the number of individuals that can become advocates with their employers for the hiring of individuals with an ASD, this is important from a business perspective for companies. Like other groups, individuals who are living with autism, as well as their family members, can be issue-sensitive consumers. Given the numbers, individuals touched by autism comprise a meaningful market share to companies. Companies that actively include individuals with autism in their workforce should be encouraged to be public about their efforts, not only to garner market share with this segment of the population, but to serve as an example to other companies.
Reducing the cost of turnover is another benefit to employers in hiring individuals with autism. Many companies struggle with the high cost of turnover, particularly in entry level or repetitive jobs. In the recently published Mercer's What's Working global survey, the percentage of workers age 16 to 24 who said they were seriously considering leaving their organizations was on average 10 percentage points higher than the overall work force. For those age 25 to 34, the number was 5 percentage points higher than the average. In the U.S., the youngest employees’ interest in leaving was even more prevalent, at 12 percentage points above the average.
Desire for routine and extreme focus can be characteristics of individuals on the spectrum, leading them to be loyal and highly productive employees. In 1997 Home Depot created a program to hire individuals with developmental disabilities, including autism, in their stores. They found that the retention rate for individuals with a developmental disability was 50%, versus 34% for other employees. For Home Depot, greater retention resulted in reduced costs.
In a survey of 411 companies, sponsored by the National Organization on Disability (NOD) and the Kessler Foundation in October 2010, 33% of the respondents reported lower turnover rates among their employees with disabilities. However, many employers worry about the cost and disruption associated with hiring and accommodating an employee with an ASD. In relation to costs, the NOD/Kessler study found that almost two-thirds of the employers reported no difference in the cost of hiring employees with or without a disability; and a whopping 80% said that the Americans with Disabilities Act neither helped nor hurt them.
The most complex accommodation needed for an individual with autism is establishing the appropriate communication tools between the employee, their manager and their colleagues. The form of communication that will allow one individual to excel on the job will often be different for another employee with an ASD. This, however, is no different for any individual—on the spectrum or not. Appropriate communications training benefits all individuals, improving all of their interactions at work, whether or not they are affected with autism.
So while today’s data on employment for adults with autism are dismal, the arguments exist to push for change. Parents, grandparents, aunts, uncles and siblings need to arm themselves with the knowledge about why employers will benefit from hiring individuals on the spectrum and advocate for those with autism in their own workplace and the workplace of clients, vendors and friends.
Brad Fremmerlind, a 25-year-old man in Edmonton, Alberta, has been making headlines with his furniture-assembly business, Made by Brad. Brad is nonverbal and autistic, and with the help of his family and day program workers, he's built a growing business. Recently, Autism After 16 talked with Brad's mother, Deb Fremmerlind, about the motivations and methodology behind Made by Brad.
AA16: Tell us a bit about Brad; specifically, what was his typical day/work situation like before the business began?
DF: Brad (Brad Lee) lives in a group home, less than five minutes from our home. He attends a day program with the Excel Society at the Gerard Raymond Centre, and he is severely affected by autism. He doesn't speak, so he uses around 200 functional signs to communicate. Our biggest struggle is this: he's very ritualistic. He can form a ritual very quickly; if you do something with him three times—like go get ice cream after a job—then chances are, it's really stuck.
Each day, Brad gets driven to his day program. There, he works with an iPad program to improve his communication … He practices manually writing words, and doing Google searches for pictures; we want to get him to have a whole picture of the language. When he's not working on that, he attends various classes, like cooking and sign language, and goes on outings.
Brad had some difficult times starting at age 15. At the time, we lived in a northern community, and both in school and at home, he just couldn't function—he'd become so ritualistic. And when aggression occurs with Brad, it's due to the interrupting of a ritual. With Brad, though, if there's a big life change, like a move, we can change rituals; we can re-evaluate and eliminate the ones that are not productive. So, when his agency was moving locations, we changed the rituals …You have to figure out what you want his day to look like, and how he can function.
AA16: How did the idea for the business come about? What were the concrete steps you took to get it set up and running?
DF: Brad's "business" is simply a tool to increase [his] social interaction with the community and to help with his life-long education. We want to develop Brad's social awareness and give back to the community by providing a service. Brad learned to build furniture from years of following diagrams, building plastic models and Legos. We'd buy Lego projects and send them to [his] day program to give him something productive to do. Ever since he started at the program, we wanted to figure out how to use his skills in building furniture. In the fall of 2013, we set a goal with Brad's day program that Brad would build furniture for people.
We felt supported by the day program, but the business was always on the back burner; there were always so many things to work on with Brad Lee! Finally, this fall, we said, “OK, let's put it in writing as one of his goals.” After that, it happened very quickly … You do need to have the right staff. There's a wonderful young man, who's very patient, who takes [Brad] to jobs.
I've always told support workers, “Whatever you're interested in, introduce it to Brad Lee, and see how it goes.” Because that's what we did at home. [My husband, Brad's father] Mark loves classic cars and airplanes, so we'd buy plastic models. It was very deliberate; we chose them because they have wonderful picture diagrams. Then there was a lot of training, so [Brad] would learn to stay on task. We spent so much money on Lego projects, and that naturally flowed into furniture. Any furniture that comes in a box with a diagram, he can put it together. He's quite good at it, but it's a learned skill. We have engineers in the family … but he's practiced since he was 3. We bought things for him to practice on … but eventually, we just didn't need any more furniture!
AA16: What's been the most challenging part of starting a business for you as parents? For Brad? The best part?
DF: The most challenging is Brad's ritualistic behavior, but once he's in a new place, a new job, it broadens his social awareness.
On today's project, Brad got a little rough; he was apparently prancing around, not working. His support worker texted Mark, to say, “Brad Lee's a little distracted!” Mark said, “You can just work on it yourself, and get it going.” And then Brad jumped in after that. He can usually stay on task, but it takes a while for him to get going. He's very focused once he starts.
Also, Brad Lee doesn't respect people's personal space … Initially, we thought we'd go into stores and have him build furniture there, but he needs one-on-one [support] and can't focus for very long. He can go in and do one project, that's it. So we thought, If stores are out, we'd like him to get out and experience building [furniture] in other people's homes. When my husband would have days off, he'd place online ads to find building jobs that they could do together. Brad doesn't like large crowds, so going into homes works well for him.
AA16: How has “Made by Brad” been set up legally?
DF: Right now it's not set up [as a legal business]. It's just one avenue, a part of his day program, but we had to call it something … Financially the business is so small it may never turn a profit. You can think of it like a kid with a grass-cutting or snow-shoveling business in their neighborhood. I can't talk about the business model because we are less than six weeks [at the time of the interview] into this. I can talk about Brad his strengths and weakness, what his days look like, and [our] hopes for the future.
We're just being very cautious. We don't want Brad to be overwhelmed or overstimulated; we just want to enhance his social skills and give back to the community. If Brad gets too many demands, there can be behaviors such as noise, and sometimes—very rarely—aggressive behavior, though he'll immediately apologize … If we control the environment, then [the behaviors] are all under control, but if we let this thing get too big … well, it has to be Brad-centered. The clients are wonderful, but it has to be Brad-centered. If it isn't, it could be detrimental to him.
AA16: What's the intake process like for new clients? Approximately how many clients/jobs does Brad do in a typical week? In what areas is he independent, and where does he need the most support?
DF: Brad does three to four jobs a week, and we book one to two weeks in advance. The price is determined by the size of the project and the proximity to his day program. Brad travels to his jobs with his support worker, and each job usually takes two to three hours. We are hoping to keep the business going through Brad's Facebook page and his website. Potential clients can contact us through both sites. Before the video, Mark took Brad to a few jobs that he got through placing a Kijiji ad [similar to Craigslist], and it was very positive experience for Brad.
We have to be careful not to set a pattern [with jobs] … that's why it works to go into these different homes and build a variety of projects. We usually do jobs a first-come, first-served basis, but sometimes that varies. We try to do jobs that are close to the day program or to our house, and jobs that offer variety. For example, if we have too many desk orders coming in, then we say, OK, this doll house project takes precedence. We've had amazing customers.
It took a little while to figure out how to do [scheduling]; initially, we thought he'd do a job a day. But then an opportunity for snowshoeing came up, and now Brad goes snowshoeing on Wednesdays. And three to four jobs per week really is better for him … it's focused on his needs, his social awareness.
AA16: How did you determine pay scale? Do you see it changing in the future?
DF: We're still working prices out. As his parents, we debate … basically, the price is based on the size of the job and the proximity to Brad's day program. If it takes a long time to get there, we charge more. By contrast, we had a request to build a kitchen table and chair for a group home, and he did it for free, as part of community service. It's not about money, it's about social development and life-long learning.
AA16: How did you gain such wide media coverage? Has that been helpful for Made by Brad's growth?
DF: For about two years, Mark has meet monthly with Ben Weinlick (of Think Jar Collective) to develop and implement an iPad program for Brad. It was in one of these meetings that the idea to make a video to help Brad get work was discussed. Mike Hamm made a very good video showcasing Brad's skills, and the video took on a life of his own. The media has made us out to be more than we are, but the media has also helped us get jobs.
AA16: Who will support Brad in this business if/when there comes a time when you as his parents cannot? Or will it just disappear?
DF: When I think about the future … I'm glad that Made by Brad is in association with day program and skilled staff, so it is sustainable. Brad's support worker is paid for by the province. His earnings are small and they go into his regular savings account. The amounts are small so we are not concerned [about loss of Brad's benefits]; however we will have our accountant do Brad's taxes from now on.
Right now, [the business] is perfect for Brad. For his entire life, we've always tried to think outside the box, partly out of necessity. We just don't want him—or anyone!—to languish in a group home and do absolutely nothing. We don't know where this [business] is going to take Brad; it's solely determined by Brad's needs.
AA16: Do you have a sense that perhaps it was easier to help develop the business with Brad once you and your husband were no longer his full-time caregivers?
DF: It is easier when we're not caregivers, but then, both of us work full-time too … In any case, [Brad] is 25, so he needs to be an adult, and this is a way for him to do that.
AA16: What are some of your hopes for Brad's future?
DF: We would love for him to have more language skills, to develop in that area—he can communicate, we just want him to have more language. Really, his rituals are a bigger issue than communication, though. I always talk about preventing the development of unproductive rituals.
AA16: What advice would you give to families looking to set up something similar?
DF: Take whatever their adult child is interested in, and ask, is there some way to develop that? And never to give up.
Sometimes people look at Brad and they don't realize that there were times in his life that were very difficult. He had to leave our home at the age of 15; his rituals resulted in aggression and holes in walls. The school couldn't handle it … We figured out we needed to move our family with Brad Lee to Edmonton … My husband had to re-train as a Medivac pilot for work, and then it was about a year before the rest of us [Brad is second oldest of four children] could come. And then we got Brad Lee into a high school, a community living program, and he was a challenge … But never give up. Wherever you are right now is not where you're going to end up.
First published on May 2, 2012.
The term “venture” implies discovery. It means to undertake something that has an uncertain outcome, learning the way as you go. “Venture capital” refers to monetary investment in a new project with unproven returns. A “joint venture” implies teaming to face the unpredictable, while “venturing” forth signals a willingness to move forward into the unknown. For a North Carolina-based enterprise, Extraordinary Ventures (EV), the term means all of this and more. As an employer of autistic adults, EV consistently sails into unchartered waters in an attempt to develop a business model that can thrive and also allow its employees to flourish.
Like many support programs for autistic adults, EV began when parents saw a void in services as their children approached adulthood. Gregg and Lori Ireland had relocated from California to Chapel Hill, NC, to access the autism services of TEACCH (Treatment and Education of Autistic and related Communication Handicapped Children) during their son’s school years. But they realized that few options existed after high school for young adults with ASD. “When my son was about 14 or 15, we started asking the questions about what we were going to do,” says Gregg Ireland. “High school ends. If you don’t do anything about it, it can really sneak up on you.”
What the Irelands decided to do was work with other parents to create a nonprofit organization that could help support autistic adults. “It took a little while to settle on the idea of jobs, and it took a little while to settle on the idea of us being the employer,” notes Ireland. And so in 2007, Extraordinary Ventures was created not as a service provider, but as an employer housing a “portfolio” of small business ventures staffed by autistic adults. Initially, EV adopted a traditional approach to the business structure and hired an experienced executive director who reported to the Board of Directors. To determine what types of small businesses EV would develop, the Board looked to the strengths of potential employees. A laundry business came first. “A couple of the kids really like laundry,” Ireland says. Leasing a building owned by the Irelands, EV installed washers and dryers and began a wash, dry and fold service which is marketed to area families and to students at the nearby University of North Carolina (UNC) campus. “The first three years were a period of going through a lot of different ideas,” Ireland notes. EV tried a paper delivery route and a service cleaning fraternity and sorority houses, but fit wasn’t optimal in these ventures. Ireland points out that it was necessary to learn “not only about what our kids could do, but what businesses we could control and manage.” Each business had to have an element of consistency. “You quickly learn that you have to be disciplined about what you do, because our kids can’t deal with last-minute stuff.”
Then two years ago, the business came to a crossroads in viability, and according to Ireland, EV “almost started over.” Instead the Board decided to try the somewhat unusual approach of hiring a team of recent college graduates, rather than one executive director. This decision provides for more management manpower for EV’s administrative buck. A board of directors and groups of advisors provide support as the team develops enterprises and oversees day-to-day operations. “We decided what we had was lots of experience and people who could help with ideas, but we didn’t have a lot of young energy on the ground,” comments Ireland. The management team reports to the Board of Directors every month and can seek advice as needed.
It also became apparent that the EV’s building itself could be used to produce revenue. And so the organization focused on space rental. Four types of spaces were created: a Great Hall, a Board Room, a lower level Rec Center, and smaller Multipurpose Rooms. This provides flexibility in rental, allowing for conferences, parties and receptions, and even a contract from a local congregation for weekly church services. The space rental business has it pluses and minuses, however. The obvious plus is that it trades on a commodity EV already has—the building. “The good thing about the space business is that it creates a lot of money,” says Ireland. But it also costs money, in terms of initial build-out, equipment purchases, and maintenance. And Ireland notes that space rental doesn’t create a great number of jobs for EV’s employees. While some events call for set-up and staffing, often only the space itself is desired. And some service staffing needs don’t match EV employee abilities. However, renting space does lure community members in the door. “In a way, it’s our calling card,” Ireland says.
For the past few years, Kelly Looser has been serving as Events Director at EV. Looser notes that EV fills a niche in Chapel Hill that other venues, such as hotels, UNC buildings, and churches don’t. “We love the hotels in Chapel Hill,” she says. “They’ve been very supportive of us.” But for people looking for event space, hotels can be restrictive, since all services must be provided by the hotel. Churches have restrictions regarding space usage as well. At EV, patrons can hire their own caterer or bring in food and drink themselves. “We can do almost anything,” says Looser. After crunching numbers recently, Looser estimates that approximately 1000 people walk through the EV doors every week. That’s 1000 people who can in turn spread the word regarding EV’s mission and services.
Growing EV has meant thinking creatively about developing new businesses. Stephen Dougherty, Director of New Business Development, notes that starting new ventures has involved some trial and error. “We were taking whatever was thrown at us,” he notes. “A lot of that was piece work, contracts.” This included publication delivery and packing of soaps. Not everything worked out well. The prep and delivery of publications turned out to involve too much work for the EV managers, create sensory issues for many employees, and was a logistically difficult undertaking. The cost—mostly in terms of human experience—was not worth the revenue. So this project was dropped and others sought.
“A big change occurred about a year ago,” says Dougherty. “That’s when we decided to scrap all these small contracts that weren’t working so well. We went through the process of formalizing and defining what were ideal ventures for us. We wanted to do some deep reflection on a real person-centered approach to how to develop a business. Number One: The job has to be meaningful and take into account the skills of our individuals. It has to be something we can control. It has to align with our mission and have low overhead. And so we started generating ideas. Google searches, brainstorming, looking through phone books. Going to websites that had business ideas. We didn’t want to have to reinvent the wheel.”
In addition to space rental and the laundry, EV currently runs:
All of these businesses are staffed by adults with autism and other developmental disabilities. EV employees make minimum wage and work part-time, with hours based on EV’s weekly activities and on individual situations. On a weekly basis, EV provides approximately 25 adults with work. EV does not provide job coaching, however. Individuals needing one-to-one assistance bring their own coaches—who may be funded through state agencies or privately. Sometimes family members serve as coaches as well. EV does not provide any transportation, so getting to and from EV or job sites is up to the employee or family. (EV’s facility is located on a public bus line.)
Community contacts have been the backbone of developing business contracts. In addition, having a presence in the community is important not only to job development, but to employee inclusion. “We want to have a social environment in working,” says Dougherty. “We want it to be as inclusive as possible. We want them going out into the community and working on crews.” Socialization extends beyond the workplace, however. EV has developed a program to help its employees socialize. “Friday Night Live!” provides recreational opportunities to members, both EV employees and other adults in the community. Bi-weekly on-site gatherings, as well as local outings, allow for socialization with supports. In a way, these events allow for further “normalization” of the employment experience for autistic adults, as creating a social network at work and ending the week hanging out with fellow employees is very typical behavior.
The proximity of UNC and the TEACCH program has also had an upside for EV. Engagement with the university provides business opportunities, and a source of college grads to serve as managers. The presence of TEACCH has created a culture of autism education and acceptance, as well as a tremendous resource for teaching techniques. “My father works for the TEACCH program,” comments Dougherty. “Growing up, all of my peer work and summer work was with kids with autism … Being near TEACCH, the knowledge just sort of rubs off.” TEACCH also provides consulting and support via board members and advisors.
With any support model for autistic adults, it’s necessary to consider sustainability. Does EV have the right stuff to survive and to continue to fulfill its mission? The organization certainly has put down the type of roots that would seem to allow for continued growth. First and foremost, EV has built its ventures based on the skill sets of autistic adults coupled with an eye toward available markets in the area. Secondly, the administrative overhead is relatively small, while pro bono support for the young managers is substantial. The downside of hiring recent college grads, however, is that while working at EV provides a wealth of experience, it is, in all likelihood, a first job for the young directors, not a long-term one. Assumption of turnover in managers must be part of the model. Other overhead is also relatively low. The facility basically pays for itself in space rental. EV utilizes relationships with other agencies and families to provide individual employment supports—the piece of supported employment that is most costly. And perhaps most importantly, EV continues to be flexible about its portfolio of businesses, adding and subtracting based on good fit for its population of employees. Lastly, EV is a nonprofit, which allows for financial support from grants and donations (40 percent of revenue) as well as income from the businesses. All of this adds up to a model that would seem to be designed to last, serving the growing number of autistic adults in need of employment. “It’s sort of like building a house,” says Ireland. “You don’t start by just putting the walls up. You start by doing a lot of planning.”
Lettuce Work, a nonprofit vocational program and service provider for young adults on the autism spectrum near New Albany, Ohio, is growing something new within the autism community. As is the case with many nonprofits that serve individuals with autism, the organization began with the efforts of dedicated parents. However, what makes Lettuce Work special is the way in which essential resources—trained teachers, a business plan, and a supportive local economy—converged. Yet these things didn’t come together by chance; hard work came first.
The story starts with Doug and Julie Sharp and their two young sons. Julie Sharp is a teacher at Oakstone Academy, a school in Westerville, Ohio that welcomes students with ASD. She has taught there for 10 years. Oakstone is unusual in that approximately 50 percent of its students have autism spectrum diagnoses, and the other 50 percent do not. Both of the Sharp’s sons attend Oakstone; their 12-year-old son is on the autism spectrum. Doug Sharp served on the Oakstone school board for six years, and was board president as well.
But how did involvement at Oakstone lead to Lettuce Work? Doug Sharp recalls, “We saw that some individuals were able to go on to college, yet some just were not ready for college after Oakstone. Either the maturity level is not there, or social and communication skills are not ready ….” The environment at Oakstone Academy is inclusive and supportive; teachers are trained to work with individuals on the autism spectrum. For many students, a transition directly from Oakstone Academy to a “typical” university can be difficult.
Lisa Wenzke, a Lettuce Work board member, parent of an individual on the spectrum and math teacher at Oakstone Academy, sees the same issue. She says, “When you’re focused around kids with autism, you’re constantly thinking ahead. You’re thinking, ‘What are we going to do after school’s done?’”
Start-Up and Vocational Challenges
What about students who are ready for employment after high school? Lettuce Work seeks to “fill in the gap” for them as well. As Doug Sharp notes, “More individuals are eligible for funding each year; there’s a need for vocational training and a safe harbor for [individuals] who might move on to college.” Wenzke agrees: “Even in this age of non-discrimination, there are many things that those with autism aren’t invited to do.”
Lettuce Work is designed specifically for individuals with autism to be employees and the organization measures success based on each person. Doug Sharp says, “Everyone [on the spectrum] is unique, and progress can be slow. We often measure in years, not days or weeks. And there are not a lot of programs out there built for that kind of time frame.”
Lettuce Work is certified to offer adult vocational rehabilitation, adult day habilitation, transportation services, and community employment. It has begun by working with the vocational education program at Oakstone Academy, enlisting students to help run the business. As of now, Oakstone students are awaiting their chance to contribute “finish work” to the greenhouses. Winter weather has delayed construction timetables; framing, HVAC, and electrical work are underway on both main building and greenhouse structures. “As soon as we get heat into the greenhouse,” laughs Doug Sharp, “[students] are coming in to help finish the construction, and then they’ll start working on the growing site.”
In preparation, Oakstone students are taking plumbing classes, and studying heating and cooling systems. A small group of students is scheduled to work at the greenhouse three days a week for several hours each day, along with Lettuce Work’s full-time staff members. Since program participation will carry school credit for these students, they will not receive wages. However, the organization plans to hire individuals as they graduate from Oakstone and other local high schools. The estimated potential wage will begin at the Ohio state minimum of $7.85 per hour. Notably, Lettuce Work has chosen not to file with the state of Ohio to pay less than minimum wage (or pay associates based on a "piece rate," a common practice for supported employment centers). As Doug Sharp says, “Our expectation is we will pay minimum wage at the beginning, with increases based on performance.”
The Lettuce Work Model
Lettuce Work’s primary focus is on helping autistic individuals develop workplace skills. To this end, Doug Sharp says, “The idea is to have them involved in every type of activity within the business, from sales delivery to customers to greenhouse work, all based on their abilities.” And now, with greenhouse construction nearly complete, they’ll have an opportunity to do so. But how, exactly, will the organization support itself? Is there a market for their product? Are they prepared for the challenges associated with training adults on the spectrum?
Doug Sharp answers these questions with precision. As the driving force behind Lettuce Work, he’s well-versed in all aspects of its business model. But this didn’t happen overnight. He recalls, “It took a long time to get to this point [with our business model]. We had to do a lot of market research locally. We were worried about ... what if we start growing and nobody buys?” To allay this fear, Doug Sharp and his team approached a group of independent restaurants who have banded together as Dine Originals. Dine Originals supports locally-grown produce, and when Lettuce Work asked to partner with local chefs to create a custom salad blend, Dine Originals said yes. As such, Lettuce Work has a built-in local market for its greens. (The retail price of the lettuce blend will vary based on wholesale prices for pre-packaged salad.)
Doug Sharp observes, “We have a wholesale market that way. With grocery stores, you’re up against big vendors. If we stay in a specialty niche, we get a little better margin, and that’s important. Yes, we’re running a social agency; yes, we’re a state vocational rehabilitation provider, but we’re also running a business.” Lettuce Work also receives funding from numerous private and corporate donors, and it participates in the Kroger Community Rewards program. The organization thus pulls together a number of different potential revenue sources, including donations, Medicaid, corporate partnerships and sales. However, Lettuce Work is not expecting any state funding initially. The business income for the first year is projected to be $250,000, with annual donations estimated at $50,000, giving the organization an estimated total revenue of $300,000. If these predictions are accurate, Lettuce Work will have resources to expand in addition to covering operating costs. “Our goal is to keep building more greenhouses,” Doug Sharp notes.
Lettuce Work has sought to turn over a new leaf when it comes to work environment, as most jobs available to adults on the autism spectrum are located in warehouse settings. As Doug Sharp says, “There aren’t a lot of [employment] choices, so we said, let’s try to figure out if we could do something more agricultural.” Though Lettuce Work seeks to be self-supporting, the organization is partnering with the Ohio Department of Developmental Disabilities for both potential funding and program input. In fact, Ohio DDD gave the Sharps the idea for hydroponic gardening. Doug Sharp recounts, “We talked to Ohio state [DDD], and we told them about the group of people we wanted to serve, with their wide variety of skill sets, and they suggested hydroponics.”
Why hydroponics? First, Doug Sharp notes that hydroponic gardening systems require knowledge of math, science, chemistry, and computers. Hydroponics involves monitoring the soils’ growth environment, adding fertilizer solution through troughs. To make matters more complex, the amount of fertilizer needed for different varieties of greens changes as the plants move through their life cycles. Employees of Lettuce Work will continue to develop math and science skills as they calculate what amount of solution needs to be administered to which plants, and when. But there are also a variety of labor-intensive tasks in the model, allowing for a diversity of ability levels. Furthermore, the organization selected lettuce as their crop because, as Doug Sharp observes, there is, “ … a constant demand for it, and a lot of routine within the growing process. We plan to produce 5,000 heads [of lettuce] per week, so there will be stuff to do every day.”
Challenges to Come
The Lettuce Work model isn’t without its challenges, though. The biggest hurdle thus far has been start-up funding. As Doug Sharp recalls, “Initially, we spent a lot of time talking to large companies. And we saw a theme; people said, ‘We’d like to see [the program] in action before we jump in and invest.’” Doug Sharp recites the questions he received: “‘How will people interact? Do you have marketing and sales nailed down?’ People want to see those addressed before they make an investment.”
Given this, the Sharps made the decision to fund a sizable portion of Lettuce Work’s initial operations themselves. To date, they (along with other supportive donors) have invested over $500,000 in capital development. This includes the land, buildings, excavation, labor, hydroponic equipment, and delivery truck needed for Lettuce Work to operate. Doug Sharp says, “We want to be able to have this as a prototype, to say, here’s the model, and it works. That way, we can get more [donors] engaged.” Lettuce Work has received a few grants, but most of the start-up funding has come from private donations like the Sharp’s. (Going forward, the organization hopes to fall back on its state funding as a Medicaid provider to defray operating costs, as needed.) Furthermore, schools and businesses have been generous, helping to defray the program's construction and startup costs. Specifically, Doug Sharp mentions donations from the American School of Technology (which donated HVAC installation), Carrier (furnace and air conditioning equipment), Home Depot and CropKing (materials and employee volunteer time). These contributions have already saved Lettuce Work thousands of dollars.
When it comes to job supports for employees, Lettuce Work is banking on self-management skills students have learned at Oakstone Academy. As Doug Sharp notes, “The teachers that we’re working with are very familiar with how to manage behaviors. The challenge will be to get [individuals on the spectrum] to do that themselves, after teachers are gone. That’s the struggle.” That transition could be tricky; both Doug Sharp and Wenzke say that Lettuce Work will need to focus on teaching employees on the spectrum to manage behaviors on their own. Wenzke says, “There will be this huge learning curve. Fortunately, we all have experience with students with autism.” Even so, Doug Sharp doesn’t mince words: “It’s going to be tough.”
Nevertheless, Lettuce Work’s staff believes that the difficulties will be worth it in the end. The Sharps founded Lettuce Work hoping that the program will help young adults learn how to move into a work environment. “The goal is that the individuals we work with move on to something bigger and better ... but we also understand that some may be working for us for a long time,” says Doug Sharp. So, our goal is to have 25 percent [of Lettuce Work program attendees] move on every year.” Put more succinctly: “We’re just a resume builder.”
But being a “resume builder” doesn’t mean moving people through the program at breakneck speed. Lettuce Work emphasizes progress at an individual’s pace; the organization’s goal to have 25 percent of participants move on to new employment each year also means that 75 percent of adults will likely remain in the program. And Lettuce Work is excited about that 75 percent who remain each year; after all, many of those individuals on the spectrum would be out of a job otherwise. As Wenzke states, “Yes, it costs money to do this, but people don’t realize: an unemployed adult costs money, too.”
In the end, perhaps there is no better metaphor for Lettuce Work than a community service project that Wenzke herself set up. “I was educating [students] on the lack of availability of jobs for people with autism,” she says. “I had them do research and write essays on someone they know, and what job placements they’ve found. And as the [Lettuce Work] greenhouses were being built, we gave those same students seedlings. I told them, ‘Grow them and care for them. You may start small, but you can grow something great.’”
Ideally, everyone desiring employment should be able to find a job. Long term employment which provides income necessary for independent living is traditionally viewed as a key factor in creating quality of life. However, this aspect of quality of life is elusive to many adults with autism. While those with autism may well be able to find some form of employment, they are often underemployed (doing a job below their skill level, and/or working less hours than desired) or they are unable to maintain employment long term. The reasons many in the autism population struggle to maintain employment are varied. According to the director of one service provider who assists young adults with disabilities in finding employment, a primary reason for job failure within this population is lack of interest in the job itself on the part of the employee. This lack of interest may manifest itself in various ways such as poor attendance and/or poor performance.
One way to circumvent the lack of employee interest, as well as address the shortage of opportunities in a struggling economy, is to custom build an entrepreneurial opportunity. The US Department of Labor’s Office of Disability Employment Policy lists the following benefits of entrepreneurship for people with disabilities:
This customized employment scenario has given rise to an entrepreneurial model known as the “micro-enterprise.” A micro-enterprise is a small business, typically having fewer than five employees and requiring less than $35,000 in startup capital. While micro-enterprises originated as a means to help poverty-stricken citizens of developing countries, the model can be applied to addressing the needs of adults with disabilities, especially those adults with the unique and special interests often associated with autism.
How does an adult with a disability such as Autism Spectrum Disorder turn a special interest into an employment opportunity? According to Ron Irvine, Micro-Enterprise Specialist at Hope Network in Grand Rapids, Michigan, it starts with the passion of the potential business owner. "As part of assessing the feasibility of a potential micro-enterprise, we must determine if this is just a hobby or if there is true business potential there. It starts with [the client's] passion and we provide the supports and leadership development to get the ball rolling. This process we use actually empowers the individual to see whether they want it to be a business or a hobby. We work with them until it is clear to them what they want and what is feasible."
Hope Network is a nonprofit organization that provides numerous support services to people with developmental disabilities, mental illness, and brain and spinal cord injuries. Support for micro-enterprise development falls within Hope Network’s Supported Employment and Skill Building and Community Inclusion services. Irvine has worked at Hope Network for four years and is responsible for assessing the feasibility of micro-enterprise for budding entrepreneurs. He notes that there are four areas in which feasibility is considered:
Hope Network emphasizes leadership development when helping young business owners, in addition to helping get their products to market. One-to-one coaching is a critical piece of the business development, as are monthly meetings held with business owners, known as the Micro-Enterprise Club. This club provides peer review of business plans and shared experiences through evaluating each other’s successes and failures. Through the County Mental Health Department, a discretionary fund has been set up for Hope Network’s micro-enterprise owners to borrow up to $500, interest free, in order to offset their startup costs and ongoing expenses. When asked about the percentage of his clients that obtain loans, Mr. Irvine responded, "Roughly 80 to 90 percent of our clients do not use these funds, because taking out a loan is scary for them. Many of them have been doing their craft as a hobby, and therefore have materials on hand, so start-up costs are not an issue."
Sarah Frisch is a 23-year-old woman who holds a bachelor’s degree in psychology. As recently as two years ago, Sarah was diagnosed with Asperger's syndrome, Generalized Anxiety Disorder, Cognitive Disorder—NOS, and Dysthymia. After earning her college degree and completing an internship at the public library, Frisch turned to Hope Network for help with her career search. "A friend of mine knew I was struggling in my job search, and suggested I see what Hope Network had to offer," she explained.
With the help of Hope Network’s Micro-Enterprise Program, Frisch was able to turn her chainmail jewelry making hobby into real income. She began making chainmail after attending a workshop at a gamers’ convention. "Making chainmail is very intricate and very repetitive. I find it calming,” she said. When Frisch completed the project from the chainmail workshop, she began to experiment with the leftover materials. That experiment led to the creation of jewelry, which she now sells at markets sponsored by Hope Network. Frisch makes earrings, necklaces and bracelets which range in price from $4 to $32. She has made one intricate cuff bracelet, which might sell for $60, but Frisch believes the price is beyond what people would be willing to spend for such a piece. Regarding her first participation in a Hope Network market, Frisch commented, "I was surprised that people actually wanted to buy my stuff." And she notes that there are challenges to this business model. "You don't make a lot at small sales. It can be difficult sitting there for three hours and only having a few sales."
Sarah has not needed a loan for her jewelry business, and sells her jewelry at Hope Network sales as well as at a local animal shelter operation. When asked about branching off and perhaps selling at Renaissance festivals, for instance, she said, "It's likely that someone else would already be selling chainmail jewelry at those types of events."
Since turning her jewelry making into a business, Frisch has accepted a full-time position in the Information Technology field. She works for a small company that counts among its clients the same public library where she completed her internship. Frisch says that the income she earned from selling her jewelry at the Hope Network markets definitely made a difference in her ability to maintain her independence and support herself until she found full-time employment. In addition to her full-time job and the Hope Network markets, Frisch also has two volunteer positions she participates in regularly and lives in an apartment on her own. Frisch’s work ethic and self-reliance is indicative of the type of passion Irvine looks for when assessing a potential micro-enterprise client for Hope Network.
What if you or someone you care for is a budding entrepreneur and don’t happen to live in Kent County, Michigan and have access to Hope Network’s services? In the case of Anthony at Your Service, a courier service in Edmonton Canada, the business was born out of parent ingenuity and the creative talents of support staff. Anthony Barrett’s mother, Deborah, recognized the absence of opportunities for a young adult with autism and set out to create an employment experience for her 24-year-old son. Anthony Barrett had been attending literacy courses at a local college but needed something else to occupy his time. Barrett enjoys riding in the car and making quick visits to new locations. His enjoyment of these small trips made courier service seem a logical choice for him. The flexibility of a being self-employed was ideal for Barrett, and thus Anthony at Your Service was born.
However, Anthony at Your Service would not be possible were it not for Barrett’s aide, Mike Hamm, who does most of the administration for the business, and takes Barrett to customers either by car, bike, or public transportation. Hamm sees the opportunity Barrett has to develop needed skills through this business model. Barrett is mostly nonverbal, and this exposure to the community is teaching him invaluable social skills such as greeting someone without prompting and tolerating standing in line. As Barrett’s familiarity with his role of courier grows, Hamm is hopeful that Barrett will be able to learn additional skills associated with the business. As it is now, Barrett makes roughly the equivalent of minimum wage and spends four to five hours each weekday making deliveries. Hamm is compensated by Barrett’s family, who are in turned reimbursed through government funding.
Anthony at Your Service debuted in August 2012, and has already received national attention in Canada. Hamm posted a YouTube video introducing Barrett and his business venture, and within two hours of posting the video Hamm received a call from a national news outlet. “If I tried to start a delivery business, it would not have succeeded,” said Hamm. “Anthony’s greatest skill is how likeable he is. He’s got this smile and he warms people just when he steps into a room. A lot of people want to work with Anthony because they want to see Anthony.”
Deborah Barrett adds, “What I think is so important about this is that Anthony at Your Service plays to Anthony's strengths and the things he likes to do. More than that, though, it's Anthony's business. It leaves control with Anthony, his family and Mike. Because it's our idea and our business, we can control things to make it serve Anthony as much as to make it serve the community.”
Where can you or your loved one find access to financial support when starting a business? Check out The Abilities Fund. According to their website, “The Abilities Fund is the first nationwide nonprofit community developer and financial institution focused exclusively on expanding entrepreneurial opportunities, including access to capital, for people with disabilities. We do this by providing a unique combination of financial products, training, technical assistance services and advisory supports to individuals with disabilities.” The Resources page on their website provides a wealth of information for the entrepreneur in the process of formulating an idea for a business.
While it’s clear that not all micro-enterprise models will provide enough income to support independent living, there are other advantages to this type of employment that are not income-driven. This type of employment model allows for flexibility to build a business around an individual’s strengths, allows for increasing skill acquisition, and provides opportunities for community involvement and social connections. A micro-enterprise might not provide a living wage, but it just might provide a life activity. With a little research and a lot of perseverance, it may be possible that you need look no further for that career opportunity than your own front door. In addition, service providers are developing programs around the micro-enterprise concept. This means that support in the form of micro-loans, business development, and general skill assessment is becoming more readily available. This doesn’t mean that any hobby can instantly become an income-generating business proposition. But if the passion is there, so might be the support and tools necessary to turn that passion into a way of life.
Meena and Ashish Mundle have been managing a successful franchise deli for nearly two decades. At Schlotzky’s Deli in Evansville, Indiana, the Mundles depend on their small staff working as a team, especially at the busiest times. At noon, sales people pick up catered lunches, office workers want a quick, healthy lunch, and some customers need a late breakfast of coffee and a to-die-for cinnamon roll.
With food costs on the rise and a sluggish economy, each link in the chain is incredibly important to this small business. At the busiest times, 12-year employee Shannon is a crucial link in the chain. Shannon, who has autism and limited communication, is responsible for weighing meat and preparing units for individual sandwiches or salads.
More than a decade ago, the local Community Job Link (CJL) approached Schlotsky’s about hiring a person with autism. Part of the Evansville ARC family, Community Job Link is an employment service for people with disabilities. It serves more than 150 people annually, and also partners with more than 50 businesses.
Shannon had never worked outside the factory setting of ARC Industries—a division of Evansville ARC—and wanted a community job, remembers Meena Mundle. “Shannon is possibly our most productive employee, and her employment has been a great success for everyone concerned,” she states.
Developing Long-term Employment
Thousands of people like Shannon on the autism spectrum need and want work. As the American work force ages, society will need them even more. So, are there lessons from Shannon’s employment that can be learned and applied for others?
Cathy Pratt is the director of the Indiana Resource Center for Autism at Indiana University in Bloomington, and an advocate for people on the autism spectrum. “We have to understand that it is not just about preparing the employee but preparing the employer,” she explains. Pratt notes that employment situations are improving, as companies like Walgreens, Marriott and Lowe’s offer opportunities for people with autism. “As a society, we just can’t think of ‘autism’ jobs,” says Pratt. “What skills will we need? And are we building cultures and climates that support our folks?” According to Pratt, the fundamental principles for sustaining successful, long-term employment for autistic adults include early preparation, long-term job coaching, the development of natural supports and coping strategies, and the creation of opportunities for vocational advancement/enhancement.
All parents worry about a child’s future. But for the parent of a child with autism, there are special fears and questions. Where will he live? Will he be able to work? What are his skills? What will happen to my child after I’m gone? Pratt believes that advance preparation is the key to a long-term vocational strategy for people with autism.
“What we in education are figuring out is how to guide families earlier for what individuals will need to prepare for long-term work,” notes Pratt. “Generally, we begin to talk about that transition when an individual is 16 or 17.” But this may not be early enough. Pratt explains that early preparation involves not only thinking about vocations, but individual behaviors that can affect a person in the work force. “Parents may want to start thinking even earlier about the behaviors and skills [their] son or daughter needs to function successfully at age 25. Are we excusing behaviors that will limit their options as adults?” Questions to ponder for a young person with autism include:
In partnership with Indiana Vocational Rehabilitation, the Indiana University Center is allied with Project Search, which places high school students in employment situations prior to leaving school. Pratt applaudes the efforts of partner businesses. “Corporations have people who are doing a fabulous job finding real work for people in real settings,” she says, citing the example of an autistic adult working for a large hotel chain. Pratt quotes the employer as saying, “I would like to have a hundred of him. He doesn’t get into social chitchat, he learns tasks easily and takes natural cues [regarding] taking breaks and lunch when scheduled, and he is probably more productive than his peers.” Pratt adds, “It is wonderful to see that corporations understand that hiring folks with autism may bring them a really good employee.”
Work issues for Shannon now are different from when she started at the deli. For Shannon’s first year of employment, her job coach visited weekly and worked closely with Mary Bennett, Shannon’s supervisor. Now employment specialist Barbara Gutiérrez-DeJarnett visits about twice a month. Meena Mundle remembers how important the first year of job coaching was for Shannon. Shannon’s preferences and work styles needed to match the deli’s needs. When Shannon started working, she had limited verbal skills. The job coach worked with the deli staff to better understand her nonverbal cues. Today Shannon is a pro at her job, and the role of her job coach has evolved into more of an advocate.
Teresa Grossi, the director of Indiana University’s Center on Community Living and Careers, describes the job coach as having a vital double role, supporting both the employee and the employer. But Gossi notes that doing the research to create a good job match is essential to long-term success. “The initial functioning level of the employee is probably less important than finding and sustaining a good match,” she says. The employee’s strengths and gifts must be assessed, along with ascertaining the specific needs of the job.
“A job coach becomes an account manager for that employer,” Gossi explains. “The job coach has to understand the language of business and not speak in human service and education jargon with the employer.” Grossi gives an example of an employee who was distracted and stressed with noise in the workplace. The job coach worked with the employer to purchase noise-reducing headphones that solved the problem both for the employer and employee. In another example, Grossi notes that light placement might affect an employee’s sensory challenges and subsequent behaviors. With the teamwork of the employer and the job coach, these issues can be found and resolved.
Natural Supports and Coping Strategies
In addition to on-site accommodations, it is important to consider the specifics of home and community life for adults with autism. About three years after Shannon started at the deli, she moved from a group home into supported community living, sharing an apartment with two other women. Her home environment is relevant to her work situation, as it is with all workers. For example, a change in the apartment such as a new roommate or new support staff member may foster a different mood in Shannon. Does this affect her work performance? Often supervisor Mary Barker is the first to notice, but can consult Guitierrez-DeJarnett to learn if the home environment is affecting Shannon’s work performance.
Guitierrez-DeJarnett also helps Shannon with personal needs, such as choosing appropriate clothing for work. She considers whether Shannon’s clothing continues to fit well, whether her uniform meets company standards, and if her shoes are too worn for work. While the job coaching role is markedly different from when Shannon started at the deli, Gutiérrez-DeJarnett believes it is critical to sustaining employment and to helping Shannon grow at work. All employees change in their jobs as years pass; Shannon is not an exception.
Pratt sees length and type of job coaching as dependent on individual needs. “We figure out that employment supports are suitable for a person with autism in the work setting. Then the person does OK, and we back off the supports and sometimes things fall apart. For some individuals, having a job coach for the short-term is OK. But for many individuals, having a job coach over time for troubleshooting is good,” she notes.
Schlotzky’s franchisee Meena Mundle credits both job coaches and Shannon’s supervisor for helping Shannon maintain long-term employment. “Mary is always willing to take time with Shannon and provide direction,” she says. “She knows when Shannon is sick or down, and she communicates well with her.”
Over the last decade, Shannon has been given more complex tasks, says Meena Mundle. Her communication skills have improved as well. “My business isn’t here to babysit anybody. Shannon is not on my payroll as fluff. She is a valuable employee, and I cannot afford fluff,” states Meena Mundle. Her husband concurs. “When you are in a franchise situation, everything is about consistency,” adds Ashish Mundle, whom Shannon calls “Meena’s husband” and not by his name. (This anecdote has become a joke between Shannon and Ashish Mundle.) “A difference in ounces on our meat servings can [fiscally] kill you or make you,” he says.
The Mundles agree that Shannon’s precision in weighing and packaging meat is critical to their business. When they moved to a new building a decade ago, the Mundles designed a less-exposed work station for Shannon that helps her focus, away from noise and distraction. Ashish Mundle, a former corporate finance manager, states that Shannon’s presence is essential. “When she’s not here, you can see that some things have not been done, and this is a problem.”
Pratt urges caregivers and employers to set high expectations for persons with autism in the work place. “Sometimes we think persons with autism don’t like change so we insist they do the same thing day in and day out. When negative behaviors occur, this may signal boredom for the person who doesn’t communicate well … Routine and consistency are good, but we need to assure we have novelty and challenges so people don’t lose engagement. A work environment is more than doing the task.”
Grossi adds, “We have a high percentage of folks on the spectrum who are very capable of working more hours, and no one can argue the benefits … Career advancement for persons with autism in the work force depends on several variables. Do the support dollars follow the individual? Is the job coach checking with the employer regularly? What is the employee’s level of satisfaction and productivity? Is it time for him to move on or up for career advancement? … We should always be assessing for career enhancement as well as wage enhancement.”
“When we raise our expectations and give people with autism opportunities, the majority of people are able to fulfill these expectations,” Grossi states. “Just because one individual with autism may not be successful, this doesn’t mean others are not going to be successful. This is exactly the same with a typically-developing person. Making an appropriate job match and providing long-term supports is what any individual needs, regardless of ability.”
Benefits of a Productive Employee
Hiring autistic adults can have far-reaching benefits. For persons with autism and related spectrum disabilities, the benefits include a sense of purpose, meaningful work, socialization, and a paycheck. For the employer, hiring a person with autism may mean getting an incredibly productive worker, someone who does the task given and more, and who often motivates colleagues to increase productivity. For society, the benefits are immense. More workers are needed as the work force ages. An inclusive society benefits everyone with more productive workers. People earning money contribute by purchasing consumer goods and paying taxes.
For employers Meena and Ashish Mundle, owning the deli is part of creating their “American Dream.” In addition, their efforts in hiring and supporting Shannon, mean that her dreams of greater independence can become a reality. And having Shannon in the deli means customers can continue to enjoy the sandwiches they’ve been dreaming of. Everyone wins.
As a writer who recently moved to Alabama after growing up in northern New Jersey, there are a few things I wish I'd done up North before I moved down South. For example, I wish I'd gone back to my favorite local diner for one last cup of coffee with a friend from high school. But the regret that tops the list is this: I never had the chance to visit [words] Bookstore in Maplewood, New Jersey. Why [words]? Because it's a community-based bookstore that offers a vocational training program for young adults on the autism spectrum.
[words] opened its doors in January 2009, when I was working as a full-time home life coordinator and caregiver for adults with intellectual and developmental disabilities in Washington, DC. In addition, I hadn't heard about [words] and the work it does until earlier this year. Fortunately for me, my family—which includes my younger brother Willie, a 25-year-old on the autism spectrum—still lives in the area. Therefore, I plan to pay a visit to [words] on my next trip back home. As an older sister, a writer with a focus on special needs, and an advocate for individuals with autism, [words] tops the list of my must-see places in my home state.
At present, [words] has had over 40 young adults and teens with autism move through its vocational development program. The bookstore usually has between five and 10 individuals on the spectrum scheduled to work in the store each week, and most individuals work between two and five hours per week (though some trainees work for longer periods, depending on their ability and desire to do so). [words] pays some, but not all, of its special education employees; those that are unpaid are shorter-term workers that come to the bookstore as part of their schools' job sampling programs.
The Founding Story
Jonah Zimiles is the co-founder of [words]. Like me, he has a personal connection to the world of autism. Zimiles is a former lawyer who became a stay-at-home father after his son's autism diagnosis, choosing to stay home in order to assist his son in his home-based learning program. But how does one move from stay-at-home dad to full-time business owner? As Zimiles recalls, “After six years, our [home life] situation had stabilized and I was able to consider a part-time return to work. At my wife Ellen's suggestion, I applied to business school and attended Columbia University's full-time MBA day program, from which I graduated with a concentration in Social Enterprise. I intended to work as a consultant to autism non-profits, but shortly after graduation, my wife saw a sign on our town's small bookstore, saying that it was closing in a month.”
This chance moment—Ellen Zimiles spotting the sign on the soon-to-close local book shop—sparked a flame in the family's imagination. “We had discussed [the prospect of] opening up a vocational training program for young people with autism, and Ellen suggested that we operate [the program] out of a bookstore and that I should run the store,” says Zimiles. This was a tremendous endeavor to take on in addition to parenting a young son with autism. But Zimiles agreed to the new adventure. The couple decided to re-open the bookstore in a significantly larger space on Maplewood's main street. The central, community-integrated location (along with its eye-catching name) has been a significant factor in its success. [words] is close to both Newark, New Jersey and New York City. This combination—a neighborhood business close to a major metropolitan area—allows for a larger consumer base while integrating adults with autism into their home community.
From the start, [words] has found its focus in providing work and vocational training for adults with autism. As Zimiles notes, “Our desire to operate a vocational training center for young people with autism drove our decision to open the bookstore. Without this motivation, it is unlikely that there would be a bookstore in Maplewood today.” And three-and-a-half years into the journey, there's still an air of excitement around the work. When asked about the best part of working at [words], Zimiles exclaims, “That's an easy question! The best part is getting to know these terrific individuals!”
Learning Important Skills
Likewise, the opportunity to work at [words] has been a boon to local adults with autism and their families. When I ask if there's a standard level of functioning needed to qualify for the vocational training program, Zimiles tells me, “We do not have prerequisite levels, but we do bring most of our trainees in through school programs. Our goal is to train young people to learn skills that will enable them to find permanent jobs, but not to supply the permanent jobs themselves. If we did, we would quickly fill up our capacity—we are just one bookstore!”
Lisa Matalon is a [words] employee who works with student groups of individuals with autism that are referred to the store by their school's vocational development programs. When asked how work at [words] helps individuals on the autism spectrum to hone their skills, Matalon says, “It gives them an opportunity to gain valuable work experience and practice social skills in a comfortable and understanding setting. The employees at [words] are all aware of the extra support these adults may need when learning and performing their job tasks.”
The on-site training and support that [words] offers to individuals with autism is based in a job-crafting model. “[We] assign job responsibilities in accordance with each individual's strengths and interests to the extent possible,” Zimiles explains. “At this stage, our focus is fairly task-oriented; our stress is both on having individuals perform functions that benefit our store … as well as encouraging contact between them and our neurotypical employees to the extent feasible.” Likewise, Matalon's role at [words] includes training employees on the spectrum in the myriad tasks that bookstore maintenance requires. These tasks include—but are not limited to—recycling, receiving and labeling books through the store's software programs, shelving books, assembling shopping bags and other store materials, and ringing up customer sales.
In addition, typical training sessions for young adults with autism at the bookstore rely heavily on school job coaches. Trainees on the spectrum usually remain at [words] for the length of a nine-month school year. They receive coaching supports for the duration of their employment, although coaches are primarily present at the start of the job. Job coaches closely accompany young people through the transition period as they begin work at [words], and having their help is a significant part of success. The presence of job coaches allows for smoother transitions, and it gives the bookstore's full-time employees time to support more seasoned workers, serve customers, and carry out their own required tasks.
Training neurotypical [words] staff members to work with young adults with autism is another prerequisite; all staff members receive sensitivity training courtesy of YAI Network. However, the bookstore staff themselves do not provide specific behavioral supports, and [words] does not employ outside professionals to offer additional behavioral coaching. “Persons requiring such [behavioral-based] support must supply [the support] from their school or employment referral source,” explains Zimiles. This support typically comes in the form of job coaches, who are trained to prompt, guide, and support an individual with autism according to that person's behavioral support plan.
Facing Daily Challenges
For Zimiles, one of the most significant challenges in supporting adults with autism on the job has been, “... Ensuring that the individuals with autism are well-coached, and that they have the opportunity to 'move up' as their skills increase.” This comment sums up the difficulties faced by many employers of autistic adults. All around the country, support professionals are asking: How can we maintain a solid standard of job coaching while providing more diverse opportunities for people with autism to grow their roles and contributions to our communities? Given that [words] has just one location at present, the possibilities for an individual trainee's role expansion are, necessarily, limited.
Even with the single location, there are times when it becomes difficult to balance the needs of the customers with the needs of the trainees. Matalon adds her perspective on this workaday quandary within the [words] model, saying, “The biggest challenge is being able to coach the employee while still being able to perform my job. There are times that the store is busy and I can't work side-by-side with the employee.” Nevertheless, Matalon finds the work rewarding. As she says, “The best part is seeing an employee so excited and eager to start working when [he] arrives at the store and so proud of what [he] has accomplished when it is time for [him] to leave.”
Since [words] is a relatively new vocational training provider in the early stages of its development and growth, Zimiles says that their most “important exportable function is the development of pride and self-confidence.” Learning employable skills at [words] does directly benefit individuals with autism in terms of self-esteem, but it's unclear whether or not the skills they learn at [words] carry over into future work environments. “We constantly get terrific new workers … [and] we constantly lose terrific workers,” Zimiles notes. But [words] does not track trajectory of trainees after they leave the bookstore. As Matalon observes, “All the employees [on the spectrum] I work with come to us through school programs, so unfortunately, I do not know what they do after they complete their [school-based] programs.”
Follow-up on trainees is a work in progress. Zimiles reports that, “We are in the early stages of developing a referral network; we currently rely on the schools and agencies that refer young people to us.” Creating a referral and follow-up program to help former employees with autism find other jobs when their time at the bookstore ended would be a great next step for the bookstore, and for the adults with autism it serves.
Taking the [words] Model into the World
When asked if they consider the [words] model to be replicable in other communities, both Zimiles and Matalon respond with an enthusiastic, “Yes!” Zimiles adds, “Absolutely! Though Maplewood is an especially welcoming community, other places would also embrace our program. The biggest challenge [to the model] is the current state of the book industry, in which it is a struggle for an independent bookstore to thrive.” [words] is a for-profit enterprise, and therefore receives no revenue in the form of grants or donations. “We wish to serve as a model for other for-profit businesses to employ individuals with special needs,” explains Zimiles. “We want the bookstore to stand on its own as a sustainable business and make sure that it is run efficiently with its budget managed accordingly.”
Yet even with the economic difficulties presented by bookstore ownership, [words] carries on in its community-based work with vigor. Zimiles says, “We love Maplewood and it is an honor and a pleasure to serve our community. Running a small business in a challenging industry is an exhilarating experience. We do hope to serve as a model social enterprise to other businesses.” Matalon concurs, “I love being a part of the Maplewood community. I started working at the bookstore so that I could have a job close by while my children were in school. I figured it would be a part-time job that would just keep me busy during the day, but working with the special needs employees on gaining new job skills has made my job extremely rewarding.” And, judging by the comments of individual employees and their parents, [words] is certainly a part of the community dreaming a new world of work for individuals with autism. Being a part of this community means facing oft-overwhelming challenges, but it also means making meaningful contributions to the field of supported employment. At least, that's the word on the (Maplewood) streets.
Cheryl O’Brien had worked as a draftsman, technician and electrical engineer before taking time off from the world of work to raise her children. But when O’Brien was ready to return to work, she could not get hired because of her poor interviewing skills. Diagnosed with Asperger’s syndrome as an adult, she had trouble understanding office politics and fitting in socially. Never mind that she had an electrical engineering degree. “No one believed I could do the work or fit in with their group,” said O’Brien, 51, of Allen, Texas. O’Brien ended up getting four part-time jobs to make ends meet—two paper routes, a gig as a crossing guard and a billing clerk position.
Kyle McNiece worked as a bagger and cashier at a grocery store. Then he dispensed coffee for customers at a car dealership. Then he bused tables at a Mexican restaurant. These jobs did not challenge his technologically-savvy mind. “The jobs weren’t going anywhere and I wasn’t doing what I really wanted to do,” said McNiece, 23, of Plano, Texas, who also has Asperger syndrome.
O’Brien and McNiece are now embarking on careers thanks to the Plano-based nonprofit nonPareil Institute. Founded in 2009, nonPareil—which means having no equal—is a nonprofit program that trains high-functioning adults with autism ages 18 and older on different aspects of video game and app design and development at a pace each student can manage. The institute is based at Southern Methodist University, which has a renowned graduate program in gaming design and development. While run independently, nP collaborates with SMU and other universities.
“There is a 90 percent unemployment rate for adults with autism,” said Gary Moore, who founded nP with Dan Selec. Both are information technology industry veterans and parents of teenagers with autism. “Many people with autism have the intellectual capacity to do the work, but their social and sensory issues prevent them from going into the [white collar] workforce,” Moore said. “We think we have figured out the solution to train them with marketable skills that will generate more than a minimum wage income that will be sustainable the rest of their lives.”
Adults pay a monthly $600 tuition to learn about video game and app design and development, including 3D animation. Students learn a little of everything involved in video game design at first, then branch off to learn about a specific field once they determine what they like and do best. Students receive a certificate of completion after they finish their coursework. For example, O’Brien discovered her skill lies in coding games. She was the primary developer of the institute’s first iPad app, Soroban, a digital abacus you can download for 99 cents. “When my app was released, I was quite shocked,” O’Brien said. “Although I had experience programming, I didn’t have any knowledge of the game world, so it didn’t seem possible.”
From Skills to Jobs
nP does not just aim to build students’ skills so they are marketable for future employers. The nonprofit also hires students who show particular leadership and capability. Such employees receive ongoing assistance and accommodations to be successful nP employees, including flexible hours to account for the use of public transportation. O’Brien now teaches coding and works on games and apps as an nP employee. She thrives on building students’ skills and self-esteem. “I like teaching others on the spectrum,” she said. “They are ‘normal’ to me and we understand each other. I think the challenge is in getting them to believe what they can accomplish if they are willing to put forth the effort. For most, nP is the first time they’ve been accepted anywhere, and they have not been given the opportunity to be successful. Here their success is only dependent on their work, and that is unlimited.”
McNiece, who now teaches level design at nP, has seen a similar change in his students. New enrollees start off introverted, but by the end of taking courses with other students like them, he said, “they’re completely different people.” McNiece has also recently experienced some personal changes. He moved out of his family home into an apartment with a roommate so he could be closer to his nP job. The transition was rough, he said, but he’s been preparing to live independently “for pretty much as long as I can remember.”
About a dozen of the institute’s 75 students have chosen to live in apartments near nP, Moore said. Some of the families who live out of state or several hours away have privately hired caregivers to check on them. Moore and Selec plan for nP to have a larger facility with on-campus housing in the future as they develop and distribute more products. Right now they depend mostly on donations and tuition to keep nP running. Donations accounted for nearly 60 percent of their revenue for fiscal year 2010. But they hope to draw enough revenue from contracts for products and tuition as they expand to build multiple training centers around the country.
The nonprofit has hired eight former students so far, Moore said. It plans to hire more students whose previous jobs have not challenged them or accommodated their needs. “We’re teaching white-collar skills in an intentionally flexible environment,” he said. The institute provides headphones to mitigate students’ sensory difficulties and a room where they can decompress and interact without pressure. Students come for lessons however many hours they can manage, depending on their transportation and other needs. Psychologists provide some pro bono counseling. And Selec runs a regular group meeting on teamwork and appropriate workplace conduct.
Professors from local universities also volunteer their time to offer some programming, Moore said. And the site collaborates with researchers who want to study the nP model. “We will be publishing white papers,” he said. “We are also talking with some large companies about doing some work for them.” The institute may one day have a for-profit division and employ former students who can work a traditional 40-hour week, Moore said. The program may even go beyond video game and app design. “We’re still young, but we fully intend to expand the curriculum to include a lot of other disciplines,” he said. “We may do 3D movies down the road. Astronomy. Art. Music. We may have our own restaurant or cafeteria someday and run a chef program.”
Until then, students are brainstorming more ideas for video games and apps, Moore said. PC, iPhone and iPad products are under development. And students continue to cultivate personal connections. “For autistics, the difficult part of working is in finding people who believe in you and give you a chance,” O’Brien said. “nP is a unique place where people on the spectrum are immediately accepted for who they are within a community of people who understand them. They find real friends they can work and socialize with. Their work proves they are very capable people, regardless of their challenges.”
When Steamers Coffeehouse opened in March 2007 in a small suburb of Denver, Colorado, co-owner Athan Miller was unsure how the small shop would fare. Would Steamers be accepted by the community? Would it stand the test of time in this changing economic climate? Would the Coffeehouse face too much competition from other coffee shops? Most of all, would it be able to live out its mission of being a sustainable business employing adults with autism and other developmental disabilities?
Why Start Steamers?
Miller, a former case manager for individuals with developmental disabilities, started Steamers Coffeehouse because, though she loved working with individuals with disabilities, she was feeling restless in her role. As she puts it, “I am not the kind of person to sit at a desk! My husband saw a coffee shop for sale, and he said, 'Let's buy it. Let's try it [as a place of employment for people with disabilities] and see what happens'. I'd always wanted to do something like that.” And with this beginning, Steamers Coffeehouse was born. When Steamers first opened its doors, it employed three individuals with developmental disabilities, and no one knew how long the little shop would stay in operation.
Fast-forward to the present, and Steamers is still going strong with 43 employees who have developmental disabilities, 40 employees without developmental disabilities, and several managers. It has moved three times to accommodate its growth, and has expanded to include an additional full-service restaurant, Jack's Bar and Grill. In addition, the online store offers customers across the world the opportunity to place orders of homemade jam, bags, and gift baskets.
When Steamers first began, Miller remembers facing a myriad of challenges. First, though Miller had a great deal of experience working with individuals with disabilities—she’d worked in disability services in various capacities since age 15—she freely acknowledges that she had no idea how to do basic business-related tasks, such as marketing, or writing up a menu. However, she and her business partner, Scott Parker, moved forward despite their lack of experience because, as she says, “Failure was not an option. [The coffeehouse was] how we paid our mortgage. Plus, we had all these people with developmental disabilities who were relying on us! If we failed, they had to stay home or go to a sheltered workshop.”
Former Steamers employee Allison McGinley's story parallels Miller's in several ways. First, McGinley's husband suggested that she visit Steamers and apply for work when the couple moved to the Denver area in 2010, given McGinley's passion for working with individuals with disabilities. Much like Miller, McGinley had worked as a direct-care professional, but she had no past work experience in the restaurant world. Despite this challenge, the experience of working at Steamers was a supportive one for her. In McGinley's words, “When I first started working, I didn't know anything about coffee. They were very patient...and it's such a fast-paced workplace. I kept screwing up [when operating] a machine; I just could not remember how to do the steamer. I was kind of embarrassed, but I asked, 'Could I put a piece of paper showing me which way [to turn the lever]'? They said, 'That's an awesome idea for everyone.' They celebrated my idea and accepted me where I was, and they do the same for individuals with disabilities.”
Job Supports for Adults on the Autism Spectrum
Working at Steamers has been a catalyst for growth for adults on the autism spectrum in Colorado, but the process has not always been an easy one. The restaurant environment itself can be hectic and overwhelming. Miller notes that the kitchen environment can be particularly challenging for individuals with autism, as it can be very loud and has the potential to foster sensory overload. Miller recalls one young woman with autism who, “...did a lot of banging her head on the wall when she first came to us. If customers were too loud, she'd crouch down under a table and start rocking.”
However, the young woman has stayed on with Steamers, and her self-injurious behaviors have reduced dramatically during her employment with the coffeehouse. Miller attributes this change to the fact that Steamers staff has been flexible, giving her the space she needs to engage in self-soothing behaviors. Yet at the same time, Miller has communicated the boundaries of the workplace; the individual knows that engaging in self-injurious behavior will cost her job. In this way, the specific, constant rules of the workplace have been essential to her success. Miller says, “She knows that she's not allowed to hit her head, or [purposefully] place a knife against her hand. Since she's allowed to do other things that make her feel better and are safe [such as rocking] … she doesn't do the things that are not safe.”
Additionally, the day-to-day workplace interactions at Steamers allow for growth in employees with autism, who often struggle to interact with strangers. Greetings and small talk are taken for granted in many workplaces; at Steamers, they are celebrated as signs of growth and positive change. McGinley recalls, “One guy, a dishwasher extraordinaire with autism … struggled with social norms. Our first conversation was very awkward, but from then on he was able to be much more candid with me. If nothing else, [working at Steamers] was helping him to be around people. I could see a difference in our relationship.”
Nevertheless, the need to serve customers and simultaneously support adults with disabilities can pose difficulties. Miller emphasizes that Steamers is first and foremost a business, but she also acknowledges that there are times when the needs of employees with disabilities have to be prioritized. As Miller says, “Mostly, we tell people: Nothing interrupts the customer. But then if there's somebody who really can't handle what's happening at the moment—if someone is banging their head or hiding under a table—you have to stop and ask [the customer], 'Can you wait?' Finding that balance has been a really big challenge.”
Though Steamers does not currently employ any individuals who have formal Behavioral Support Plans, the business does have informal supports in place to help employees with disabilities to succeed on the job. For example, the Steamers work schedule for individuals with disabilities is structured so that, in many cases, individuals with disabilities are working part-time rather than full-time. In this way, Steamers can support individuals who might not have the focus, energy, or attention required for a full-time job. This type of staggered scheduling also allows more individuals to work at the coffeehouse and restaurant. Even so, Miller acknowledges that Steamers Coffeehouse and adjacent Jack's Restaurant are not the right workplace environment for everyone. In some cases, the high level of stimulation is prohibitive. As Miller remembers, “In one instance, a guy [we employed] couldn't handle being touched, and he doesn't work here anymore. We couldn't prevent it from happening; people are brushing past one another all the time. He would explode and scare people.”
A Model of Business and Community Inclusion
Steamers is uniquely positioned to serve a particular residential area in suburban Denver. Though it does partner with other businesses in the area and offer online ordering, its primary client base is the walkable subdivision which surrounds the coffeehouse and restaurant. Miller notes, “That built in customer base has really helped us.” However, she also notes that their distance from the downtown area can be a double-edged sword, explaining, “Because we get the same customers, they'll stop coming if we're not good enough!” McGinley echoes that statement. “It's the only coffee shop in the subdivision—so it's not just a workshop, it provides people with coffee and food,” she says. “There were people who would come in and be impatient … But I knew that [doing some tasks myself] would be taking away something that's so important and empowering to others.” This mindset of support and partnership has helped Steamers to employ many people with disabilities, and it has kept many customers coming back for more.
Though the interaction between people with and without disabilities is a primary goal for Steamers, it can be uncomfortable at times. As Miller says, “The public doesn't really understand the behaviors [people sometimes exhibit]. One guy paces. Then customers see this guy—he looks different—and they kind of wonder, 'What's going on here?'” The initial visit to Steamers can be awkward for newcomers, but Miller reports that many people come back, because they want to support the work that Steamers and Jack's are doing, and because both restaurants strive for excellence in their service. In her words, “First impressions are important; I want to be careful to not turn people off … because if they come back, they can see how great people with disabilities are.”
Like some art-based day support programs, Steamers is both a business and a vocational program. Steamers is a for-profit enterprise, but it is also a Medicaid Waiver provider of services, and the funding it receives from the state of Colorado allows the business to pay its employees minimum wage. As such, operational costs and profits must be generated by the restaurant and coffee shop itself. Initially, Steamers did consider becoming a non-profit, but, as Miller says, “I feel strongly that you can be a for-profit agency and employ people with disabilities, too. I think it's really possible to run a business and do good. I want people to walk in here and say, 'This is a really cool restaurant … and it also employs people with disabilities'. I want the product to be first, to sell itself.”
Areas of Growth
Today, Miller suspects that perhaps her very lack of initial business experience may well have helped Steamers to become what it has. As she says, “We have to build inefficiencies into our business model. The trick is finding places where it's efficient and inefficient, and balance the two.” Likewise, McGinley posits, “I think it's about finding that balance between being a top-notch coffee place, and a place that’s ultimate purpose is to empower people with disabilities. It's about finding creative ways to do both.”
When asked if Steamers is replicable in other communities, Miller says that, even though the values it stands for can certainly be embodied elsewhere, the exact nature of the restaurant is unique, and will not be franchised, despite offers to do so. She says with conviction, “You can't write a manual [for a business like this], because you're working with people with developmental disabilities and not one of them is alike.”
With this belief at the forefront of their thinking, Steamers Coffeehouse and Jack's Restaurant represent a significant step when it comes to supported employment for adults with developmental disabilities. The bustling, community-based environment is a far cry from the typically segregated sheltered workshop model. And thanks to its location, its dedicated staff and supporters, and its attitude of support and acceptance, Steamers continues to grow. In Miller's words, “We had to change and evolve and be flexible to succeed.” In this way, Steamers serves as a model for what is possible for inclusive businesses across the nation.
As such, the experience of working in the Steamers Coffeehouse is a powerful one for its neurotypical employees as well. McGinley recalls her experience with one young man with autism, noting, “I had this idea in my head of what autism was like, and he didn't fit it! He's really different than I expected.” Working at Steamers allowed McGinley to let go of preconceived ideas of autism and make new connections.
For her part, Miller also realizes how powerful it can be to have adults with disabilities working alongside people who lack preconceived expectations of what they can and cannot do. She recalls, “We have a guy who works here with developmental disabilities, and [the cooks] got him hand-cutting french fries. I was around the doorway while this was happening; they couldn't see me. And I'm thinking, 'He has degenerative muscular problems, he can't do this!' And now, he cuts our french fries every day! [The cooks] aren't social workers, they don't know his diagnosis, they didn't have expectations. When you don't have those expectations...” she trails off, a smile in her voice.
What Miller and her staff have learned is that when you don't have expectations of failure, adults with autism and other disabilities can—and do—surprise you. And perhaps what Steamers has most contributed to the field of inclusive employment is that it has grown into a place in which those surprises abound.
In 1943, psychologist Abraham Maslow articulated a theory of human motivation referred to as the “Hierarchy of Needs.” Often depicted as a pyramid, fundamental human needs are ranked from the most basic physiological drives such as hunger and thirst through safety needs, social needs, and ultimately the need for what Maslow referred to as “self-actualization.” Maslow’s hypothesis was that humans are motivated to satisfy fundamental needs before they become concerned about higher order ones.
More recently, social scientists have examined the components of what makes for “Quality of Life." Or more simply put, what makes us happy? Just as with Maslow’s hierarchy, this model focuses first on accessing food and shelter and ultimately friends, family, and activities we find meaningful.
At the core of need fulfillment is employment. Employment creates access to life’s necessities and niceties. Money may not buy happiness, but it buys opportunity. It buys food and shelter and transportation. It buys healthcare and access to professional support—from therapists to painters to pet sitters. Perhaps equally important, employment can drive personal satisfaction and can make us feel as though we are valued community members.
For adults on the autism spectrum, finding and keeping jobs is difficult at best and often simply impossible. We know this anecdotally, but studies are bearing this out with increasing regularity. Adults with ASD are chronically unemployed or underemployed. While these numbers certainly include a small population of adults whose autism or co-morbid condition renders them unable to work, many adults on the spectrum might well be employed more fully with more effective supports.
So what stands in the way of access to and success at jobs? For some adults with ASD, it may be inadequate training opportunities at the secondary and postsecondary levels. For others, it may be the lack of information and support in job-seeking—both in terms of identifying good fit and then in successful job application. Even when a job is secured, many adults with ASD face challenges in maintaining the job and maximizing opportunities on the job. Weak social fluency routinely affects keeping jobs—everything from making co-workers uneasy to being perceived as impertinent with supervisors. Punctuality and absenteeism can be frequent, as many adults on the spectrum don’t drive and face transportation challenges. If executive dysfunction is present, organizational skills may be compromised and compensatory strategies must be developed. In addition, without sufficient training in job skills—including the “soft skills” of frustration tolerance, endurance, and flexibility—adults with ASD may find themselves lacking the tools for employment success.
A Triad of Needs
In order to see increased employment of adults with ASD, it would seem that a triad of components must be in place. First of all, young adults with autism need career assessment and training with teeth during the Transition years. Transition services must adequately consider individual strengths and challenges, and address these both in light of skill development and career identification. This often means being creative about job development and paying close attention to generalization of interpersonal and self-management skills. Secondly, employers need to make a real commitment to hiring adults on the spectrum and must be able to access education and support for supervisors and co-workers. And finally, job supports—including reliable transportation options—must be available and meaningful. Job coaching must include real skill development as well as dialogue with the individual—and often family members—regarding strategies of continuing and increasing success.
Entitlement versus Eligibility
For the adult on the autism spectrum, preparing for, finding, and keeping a job depends on 1) a solid understanding of individual employability and 2) a solid understanding of the system of supports that exists on both the federal and state levels. The process starts during the Transition years in school. According to the Individual with Disabilities Education Act (IDEA), which was reauthorized in 2004, transition services must begin at age 16 and last until the student graduates with a regular high school diploma or ages out of the system at age 21. The reauthorization of IDEA places a heavy emphasis on transition services, mandating that IEPs address training needs in all aspects of adult living, including employment. It also mandates that adequate transition assessments be conducted to develop IEP goals. Students must be invited to participate in IEP development beginning at age 14, and it is crucial that students and families take the development of transition goals and inclusion of necessary services extremely seriously. While still in the public education system, a student is entitled to this type of support. Once the student leaves the school system, access to employment supports is primarily a matter of eligibility, and will ultimately be based on availability of federal and state resources.
No Central Agency
Within the public education system, the IEP functions as the touchstone from which all services flow. It is important to note that no one point of contact exists in the universe of adult services. Rather, multiple agencies and programs can be found based on federal and state legislation. At the core of a huge, often convoluted, network of disability services is the Social Security Administration (SSA). The SSA administers many programs, including the retirement pension program workers access at age 65. There are two primary SSA support programs for people with disabilities: Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). While SSDI serves people who have paid into to Social Security system and then become disabled, SSI serves those who have a lifelong disability such as autism. (There are benefits available for children of disabled workers under SSDI as well.) In order to receive SSI benefits, an adult with ASD must be found eligible. It is important to note that qualifying for SSI as a child does not automatically render one eligible in adulthood. A new application process must be undertaken for adult determination at age 18. Eligibility for SSI is dependent on 1) impact of disability; and 2) personal financial assets.
Qualifying for SSI means that an adult with autism can receive financial support in the form of a monthly Social Security payment. In addition to this, the SSA has created a number of work incentive programs. The Ticket to Work program provides employment supports such as job development and coaching to people who qualify for SSI. In addition, there are programs such as Plans to Achieve Self-Support (PASS) which allows eligible people to shelter assets from inclusion in SSI eligibility determinations.
Medicaid and Employment
The federal government works with the states to run Medicaid, which is basically a health insurance program for people with low incomes. The federal government matches state Medicaid dollars. In many states, qualifying for SSI automatically makes someone eligible for a basic set of healthcare services mandated by the federal government. However, the states may then provide other services—including some types of employment supports—at their own discretion. The states then create eligibility requirements for these “optional” supports. In addition, states may petition the federal government to allow going outside Medicaid guidelines to offer different types of supports or to alter basic eligibility requirements. When states petition for and receive permission (and thus, federal dollars) to create Medicaid services that are outside federal guidelines, this approval is referred to as a Medicaid “Waiver.” From an employment standpoint, the Medicaid Waiver to note is the Home-and-Community-Based Services (HCBS) Waiver, also known as the 1915c Waiver. The purpose of this waiver is to allow states to provide community-based support services to people who might otherwise require institutionalization.
The States and Vocational Rehabilitation
The federal and state governments also collaborate in provision of Vocational Rehabilitation services (VR) as per the Rehabilitation Act of 1973. Amended in 1998, this legislation mandates that each state and the District of Columbia create a program for providing time-limited employment supports. However, eligibility varies from state to state. Qualifying for Social Security benefits in the form of SSI does not automatically mean that an individual will also be found eligible for VR benefits, although some states use this as a starting point in eligibility determinations. Although VR programs are mandated by federal legislation, they are funded with federal and state monies. Thus the availability of services in any one state is highly dependent on that state’s budget.
One Stop Centers
Another federal law, the Workforce Investment Act (WIA) of 1998, created employment supports housed in “One Stop Career Centers.” One Stop Centers are designed for all job-seekers, not just those with disabilities, and provide a number of employment services as well as access to information. Availability of services varies from center to center, as does how connected the center is to other state and community resources.
State Developmental Disability Agencies
In addition to programs created under federal law, most states also have government agencies that oversee services for people with intellectual and developmental disabilities. These programs are not structured by the federal government, and can vary dramatically from state to state. Each of these state programs has its own eligibility requirements and access to funds. Due to budget cuts, many states find their ability to provide services is limited and waiting lists are lengthy.
Within each state are a number of Community Rehabilitation Providers (CRPs)—social service organizations that actually provide the services funded by federal and/or state monies. These organizations may be structured as non-profit or for-profit enterprises, and basically serve as subcontractors—sometimes referred to as “vendors”--to the government agencies. CRPs are independent companies that can decide what services they will provide and whether they will enroll only those people referred by a state agency or whether they will also take on private clients. So it is possible to be found ineligible for SSI, VR, or state development disability agency resources and still utilize a local CRP’s services.
The Right Job
Understanding available programs in your state is just the first step in accessing employment supports. Crucial to creating a successful employment trajectory is analyzing job fit and assessing level of support required. These two components fit together like pieces of a puzzle. The right job with the wrong supports won’t work any better than the right supports for a badly matched job.
Job fit might be defined as a combination of type of work and structure of job. That is, not only must the young adult with ASD think about skills and interests, but also about the structure of the organization and work day. An interest and ability in video gaming, for example, does not mean that a young adult with ASD would necessarily enjoy or be successful in this industry. Working long hours as part of a design team may prove problematic. Loving to cook for your family doesn’t necessarily translate into the ability to handle the hustle and bustle of a restaurant kitchen. A good assessment will take into consideration not only skills and interest, but job structure. Competitive Employment—competing with all other job seekers for existing positions—has historically been difficult for adults with ASD to achieve and maintain. Alternatives to Competitive Employment include Customized Employment—a job specifically designed for someone with ASD by an employer—and Creative Entrepreneurship—self-employment or employment in a family-run business. While government supports for Competitive Employment are typically accessed through the agencies described above, other supports exist in the realms of Customized Employment and Creative Entrepreneurship and are often based in small-business development incentives.
In addition to analyzing job fit, it is important to ascertain what types of support an adult with ASD is likely to require to help ensure success on the job. It may be useful to think about supports as spanning a continuum, from most to least intensive:
Ascertaining what an adult with ASD wants and needs, however, doesn’t create job availability. What adults on the spectrum and their families often learn is that level of support needed often drives type of work accessed. More intensive support needs often result in minimal choice in job placement.
Making it Happen
The assumption that many families make during the Transition years is that at age 18 or 21, the adult with ASD will be shown a pathway to employment by a central agency. And while a good VR counselor or job developer can be hugely helpful in hammering out employment trajectory, it is absolutely incumbent upon the adult and family to drive access to services and to help formulate and maintain employability. Employment needs must be addressed early, often, and with vigor. Transition IEPs should include investigation of VR and developmental agency services (including being put on waiting lists), as well as meaningful assessments (including job sampling) and work, internship, or volunteer opportunities. SSI application or re-application should be focused on early, with the understanding that many young adults with disabilities are found ineligible at initial application, but upon appeal are found eligible. Options for further education and training and the postsecondary level should be examined. Returning to the notion of need fulfillment: Adults on the autism spectrum need to work, and our communities need to have them do so.
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