(Adapted from the new book, The Autism Full Employment Act, published in June).
“Mark has limited expressive language. He can say, ‘I want to eat’ or ‘I want to go in the car’, and other simple phrases. The autism employment programs at Microsoft or SAP, well beyond his cognitive abilities, are unthinkable for him. Even working at an Amazon warehouse or Walgreens facility is well beyond his capacities and capabilities.”
“Mark” is Mark Vismara, 28, who is seeking to overcome severe developmental challenges related to autism. The speaker is his father, Louis Vismara, MD, 78. Dr. Lou, as he is known, practiced for many years as an interventional cardiologist in Sacramento, California. In 1999, he co-founded the University of California, Davis MIND Institute, and has served as a senior policy consultant on neurodiversity for three California Senate Presidents.
Lou helps Mark with his daily schedule, exercise, and health concerns. But most of all he helps Mark with a series of employment projects that Mark engages in: dining hall set-up duties at a long term care facility, a dog walking business, being part of the Pride Industries workshop in South Sacramento. “It’s clear that his employment projects mean a lot of Mark. Like all of us he gets a real identity and sense of purpose from these projects,” Lou explains. “And they keep him active and offer an alternative to watching Thomas the Tank Engine at home.”
Last week, the CBS show 60 Minutes, rebroadcast a widely-viewed segment on hiring adults with autism, profiling a company, Autonomy Works, that hires adults with autism in data management and analysis. Like others in the autism community, Lou found the segment well-produced but narrowly focused on the 10%-15% of the autism community with tech skills. “The segment, like almost all media reports, misses the one third or more of adults with autism with significant cognitive impairments, and their desires and roles.”
What of those workers, like Mark, who are more severely impaired? For much of the post World War II period, these adults have been in sheltered workshops, or in “day programs”, or most often, at home. Are there realistic alternatives going forward?
Yes. Three broad strategies are being tried that hold promise: (i) supported work in mainstream workplaces, (ii) small businesses targeting those with more severe disabilities, and (iii) new forms of alternative workplaces. To an extent, Mark’s employment projects illustrate all three strategies.
Prior to the pandemic, Mark worked two days a week at the Eskaton long term care facility in Sacramento’s Land Park area. As Lou describes, “Mark would arrive at the facility at around 1:00 pm when the one hundred or so residents would be finishing lunch. A number of the residents knew Mark and would greet him. Within a few months, a connection seemed to grow between Mark and residents. Mark, assisted by his job coach, would clean the tables, and eating areas. He would then set up the tablecloths and silverware for the evening meal. He would work until 3:30 or so. It was only two and a half hours, but he got out of the house and was active.”
Since the start of the pandemic, entry to the Eskaton facility has been limited, and Mark has not been able to come. He has been able to continue two independent businesses, Lou helped him set up a few years ago, in dog-walking and vending machines. “Mark loves dogs, and with his job coach provides dog-walking services to neighbors. He stocks two vending machines in the area: going with his job coach to Costco to purchase the foods, stocking the vending machine and collecting the revenues.”
Mark also has been able to work two days a week at the Pride Industries facility in Sacramento. Pride Industries, based in the Sacramento area, is one of the largest employer of adults with disabilities in the nation, with facilities throughout the country. Lou observes that “Mark and the other adults work together on packing, labeling and other tasks. He truly enjoys the comradery and interacting with other employees and being in an environment that is consistent and highly structured.”
Few parents have the abilities to pull together work opportunities like Lou is doing for Mark (who also has volunteered preparing envelopes at a local church, and with the local Goodwill). But Mark has embraced these opportunities, and prefers them to sitting at home. His activities represent his interests, not only Lou’s vision. In my experience, the great majority of adults with severe disabilities similarly prefer to be part of their community and to go somewhere every day.
Small businesses are being established by family members, specifically to create job roles for the more severely impacted—VenturesATL in Atlanta, Extraordinary Ventures New York, Danny’s Farm in Los Angeles, are examples. Helen Chan, a mental health professional and doctoral student at The Wright Institute, is studying these businesses. “I listen to the stories of these family members and am truly inspired, the lengths to which family members will go to create work opportunities, the pleasure they find in these businesses, the joy it brings to the adults with more severe disabilities being employed.”
The autism-focused businesses will never create large numbers of jobs (they bring other social values). A greater number of employment opportunities will be in mainstream settings, when possible. One of these settings may be long-term care facilities, like the one that Mark worked in. Lou believes there is a synergy of seniors and adults with disabilities, and is engaged now on a project to expand the role of adults with disabilities in long term care settings—in dining hall set up, maintenance, recreation and other roles.
Other settings may be in sectors where, post pandemic, employers are reporting difficulty filling jobs—restaurants, retail, entry level service. In the past, though, these settings generally have not proved to be good fits, in terms of skills and aptitudes, so any placement needs to be carefully tailored.
Further, what’s clear is that significant number of the most severely impacted will not be a fit for mainstream settings, even with job coaches and other supports. That’s family members are pushing back against the current federal and state government attempts to downplay or even eliminate the alternative settings. Jill Escher is the president of the National Council on Severe Autism, and the parent of a severely impacted son and daughter. She is plain-spoken about the role of alternative settings:
“Many adults with severe disabilities will be incapable of competitive integrated employment, understood as employment in mainstream settings. It is fruitless and misleading to pretend otherwise. The private sector and even most nonprofits are not equipped to handle adults with severe conditions. We need to stop pretending that making competitive integrated employment succeed is finding the right job coach, or wage subsidy, or trained supervisor.”
Instead, Escher advises, let’s look at developing alternative workplaces, with proper supervision and support, ones with realistic financial backing. Pride Industries is one such workplace. Over the past decade, the number of workers in Pride Industries alternative workplaces has dropped from 1300 to 650. This is not due not to reduced business orders. Rather it is due to the government’s embrace of mainstream employment as the overriding goal, and drive to phase out of alternative workplaces. It is a policy that needs to be reversed.
“There is nothing discriminatory about jobs that protect the severely disabled from being fired or from the vicissitudes of the free market”, Escher states. Escher points to family members linked to her Council who are “nonverbal, cannot follow even simple directions without continual guidance and exhibit an array of disruptive behaviors. It is not just unlikely, it is impossible, that they would ever be hired for competitive wage jobs.”
“The bottom line is that my son and other adults severely impacted need options”, is Dr. Lou’s conclusion. “Pride Industries and other alternative settings need to be nurtured, supported, and expanded. They not only provide choices and opportunities for adults who are overcoming developmental challenges, but also the services they provide are good for business and provide a critical piece of the employment structure for the severely impacted.”
***
After more than twenty years of advocating for individuals with developmental disabilities, Dr. Lou has adopted and often repeats the following as the touchstone: “We all need a job, a home, and a friend”.
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