Why would a parent advocate for their disabled child to be paid less than minimum wage?
This seems crazy right? Shouldn’t parents be raising their kids up, fighting for equal pay?
But yet I find myself advocating to save a program that does just that- pays less than minimum wage.
Here’s why....
My son, Ben, is 18 years old. He is a tall, good-looking kid. He is 6’ tall, 250 lbs and his bear hugs are rare but so all encompassing there it is worth the wait when he gifts you with one. He loves, no adores - maybe even lives for- swimming. I think it’s because of his passion for the water that he is obsessed with dolphins. If he was asked what he wanted to be reincarnated as my bet is that he would say dolphin immediately. But he won’t ever say dolphin. He may go to his iPad and show me a picture of a dolphin- or a video. But he wouldn’t be able to tell me. And I doubt I could explain an idea like reincarnation to him either. Benny is nonverbal autistic. He often understands what is said to him (at some level) and can communicate some of his wants and needs with his iPad. But he cannot converse. We cannot have a conversation about the wonders of the universe or about life or religion. He certainly has no understanding of employment or money. He doesn’t understand fair wage or sub wage or14(c) programs. And he doesn’t know that he, part of the most vulnerable of the disabled population, is about to lose this safety net.
Competitive Employment for ALL!
Some disability advocates are telling lawmakers that all people, no matter how disabled, can find integrated, competitive employment.
This simply is not true.
We are working hard with Ben’s school to decrease his behavior issues (such as impulsively taking food from someone’s plate or loud yelling) and increase his vocational skills (such as folding t-shirts, sorting silverware and shredding paper). Ben cannot read, write or talk.
Severe autism has increased and accounts for a staggering 1/3 of those diagnosed with autism. Ben cannot stay on task without a 1:1 and needs breaks about every 10 minutes. He performs better in a sensory friendly environment with limited sounds, soft lighting and flexibility.
We have been working on IEP goals for years to get Ben ready for the real world when he turns 21. In doing so, I have learned about the post-21 REAL world of employment for the disabled. Who is going to hire Ben especially when a nondisabled or more high functioning disabled person is available who can do 20x the work?
Unfortunately, if we are all being honest, the answer is no one. No one is going to hire Ben.
Enter...the 14(c) programs. 14(c) programs fill a gap for the severely disabled.
Section 14(c) Programs
Section 14(c) of the Fair Labor Standards Act, authorizes employers to pay specially tailored wages to employees with disabilities in certain restricted circumstances. I visited a “sheltered workshop” run by Easter Seals where employees worked on assembly of flashlight helmets for firefighters in California. Employees contributed to different parts of the assembly process based on their abilities and with much assistance. It wasn’t perfect. There was a lot of downtime. Employees often “practiced” assembly in between filling orders. Employees received a small paycheck based on reduced subminimum wage.
However, it is important to note what the employees receive beyond their paycheck in these programs. They get specialized staff (behaviorist), job training, social skills training, a day away from the group home, and a feeling of belonging. In short, they have a perceived purpose. We all need to have something to do - somewhere to go. They often enjoy and thrive doing the patterned, repetitive work that would frustrate many other people. But there is room for improvement.
Most sheltered workshops are run by nonprofits where exploitation of the worker is not the issue. Oversight remains imperative and staff training and meaningful work could be improved. A more inclusive way forward could be to link sheltered workshops with retired entrepreneurs and student interns to infuse modern business approaches.
Throwing out the baby with bathwater
Articulate advocates with disabilities are fighting to end all 14(c) programs. They feel that if any opportunity to pay less than minimum wage exists, employers will use this as an excuse to exploit their disabled employers. This type of exploitation needs to be addressed and we must ensure that workers have a way to move out of 14(c) programs and into competitive integrated employment wherever possible. Ending the 14(c) programs altogether leaves our most severely disabled (and often voiceless) population with literally nowhere to go.
Am I being too negative? There are some employers that may welcome the challenge. Will elimination of 14(c) sheltered workshops result in more employment opportunities for those formerly served by the 14(c) programs?
Data from states that have closed their sheltered workshops do not demonstrate a correlated increase in competitive, minimum-wage employment. In Maine, two-thirds of former workshop participants are now unemployed. Those adults with intellectual and developmental disabilities that do have jobs work only an average of twelve hours a week, which is the lowest average in the country.
In Washington state, more than 80% of those with severe cognitive impairments remain unemployed.
Even Vermont – whose push for inclusive employment has been celebrated as a tremendous success – reports fewer adults with I/DD in supported employment since closing its sheltered workshops in 2002.
In short, when sheltered workshops close, participants often end up idle at home, not in competitive, minimum-wage jobs.
Let them volunteer or do community outings
Another solution proposed by those who do not have familiarity with severe autism, suggests that because the work people with severe autism do isn’t competitive work, it isn’t valuable. So worthless, in fact, that it should be taken away without consulting them and replaced with outings or some type of volunteer work. Volunteer work for people with behavioral issues is all but nonexistent.
Without a purpose, it is difficult to fill an entire day with recreational activities. As one parent told me, “all my son learned from going store to store, without the money to buy anything was maladaptive behaviors in the community. There were no goals, no sense of accomplishment. When he had a behavior in the community, the result was he was homebound, isolated. And I saw a glimpse of what his life will be without me. It was utterly without hope.”
At the very least, should there be an exception for those who choose the 14(c) option? Otherwise, options for young adults with severe autism, like my son, dwindle to isolation at home, and mom or dad is forced to quit their job to care for their adult child during the day. Two people out of work. Surely we can do better.
Let’s do better
There is a need for some form of 14(c)- with oversight to be sure. It needs to exist, not for the advantage of employers, but to allow those who are willing to create jobs for the “unemployable”: nonprofits that create and keep these kinds of programs going; companies and nonprofits who can give severely disabled people who are unable to function in a “less structured work environment” someplace to go. Someplace to do. Someplace to be.