“The COVID-19 pandemic, horrible as it has been, has given us the perfect opportunity to redesign our society and systems to be more inclusive of the rights and desires of people with disabilities. There are numerous bills in congress that can support people with disabilities in achieving the American dream of competitive, integrated employment—a movement often referred to by the motto “Real Jobs for Real Pay.”
By: Nicole LeBlanc
As we enter Year 1 of the Biden Administration and Year 2 of this nightmarish pandemic it is now more important than ever that we pass meaningful reform that focuses on moving away from segregated settings, and toward a world where paying livable wages and ending benefit cliffs is part of the new normal for all people with disabilities.
The COVID-19 pandemic has shined a bright light on the dangers of segregation and discriminatory employment practices like paying sub-minimum wage. Additionally, it has highlighted the need to ensure that Essential Workers like Direct Support Providers, retail workers, and so forth are paid decent wages for the work they do. Many people with disabilities who are at high risk of catching or dying from COVID often work in jobs which are deemed essential.
The practice of paying workers with disabilities subminimum wage based on their productivity has been around since the 1938 Fair Labor Standards Act under Section 14C. Many people of color compare 14C subminimum wage to slavery.
14C is one clear example of the systemic ableism that exists in our society. 14C subminimum wage does not promote self-determination or support people with developmental disabilities in becoming self-supporting. Segregated employment is system-centered, not person-centered, and it is important we change this to achieve self-determination. As we look towards the next 30 years of the Americans with Disabilities Act, we need to raise expectations and awareness for all adults with disabilities and their families on the value of real jobs for real pay. The time is now for the “Era of Low Expectation Syndrome” to come to an end. We must move to a world of high expectations and presuming competence and employability.
Transformation of the Disability Service system can be exciting and scary at the same time, but it’s worth it.
The COVID-19 pandemic, horrible as it has been, has given us the perfect opportunity to redesign our society and systems to be more inclusive of the rights and desires of people with disabilities. There are numerous bills in congress that can support people with disabilities in achieving the American dream of competitive, integrated employment—a movement often referred to by the motto “Real Jobs for Real Pay.”
One bill of importance is the Raise the Wage Act, which would raise the federal minimum wage to $15 an hour and phase out the practice of paying sub-minimum wage over a period of five years. Another important bill is the Transformation to Competitive Integrated Employment Act which, if passed, would provide money to states to support them in moving away from outdated models that pay people with disabilities subminimum wage in sheltered workshops and other segregated settings.
In order to maximize the success of the Transformation to Competitive Integrated Employment Act, it is vital that states invest in infrastructure to support disability provider agencies to develop person-centered employment programs that help people with developmental disabilities get jobs and careers in the community at minimum wage or higher.
One big piece of this is paying living wages to Direct Support Professionals and job coaches who play a major role in our successfully living and working in the community. People with disabilities, especially those who self-direct their services, need staff stability in order to be successful while living and working in the community. In addition, we also need to create effective training programs on successful job coaching as part of our transformation to Real Jobs for Real Pay.
Other major reforms we must focus on are overhauling the Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI) and other public benefit programs to eliminate work disincentives that keep people with disabilities trapped in poverty. As the minimum wage rises across the nation, we are going to see more and more people with disabilities falling off the cash cliff. In other words, for a non-blind worker with a disability who works 25-30 hours a week @ $15.00 an hour you will hit the Substantial Gainful Activity (SGA) earnings cap of $1310 much faster than someone who is blind. For the blind community the SGA earnings limit is $2190 for 2021.
An easy way to solve this problem includes eliminating all earnings limits and simply treating SSI & SSDI as Universal Basic Income. As a society we must face the reality that the economic cost of living with a disability is much higher compared to those without disabilities. A second solution would be to raise the SGA limit to the same level as the blind community and adopt the $1 for $2 benefit offset above SGA—in the Supplemental Security Income program your income goes down $1 for every $2 you earn. Using the $1 for $2 offset in the Social Security Disability Insurance program would allow people with disabilities to earn more money and not worry about falling off the benefits cliff.
This is especially important for people with disabilities who live on their own in cities and states with a very high cost of living. Getting rid of benefit cliffs will also go along ways towards reducing the stress and anxiety that comes with working part-time with a disability, as we move away from segregated work settings that pay people with developmental disabilities subminimum wage.
In addition, many people with disabilities face barriers to achieving full-time employment ranging from stamina issues to attitudinal barriers like ableism in the business world.
In the area of work incentives, we must expand what counts as an Impairment-Related Work Expense (IRWE). One area that needs an overhaul is the policy for which transportation costs count as an IRWE. Currently you can only count taxis as an IRWE if you live someplace where there is no public transit. If you live in a place where there is public transit, you are expected to use it unless you get a doctor’s note that says you are unable to use regular public transit and need Metro Access (also known as ParaTransit). ParaTransit is often the only thing you can deduct as an IRWE.
In the last ten years transit options have evolved to include Uber and Lyft ride-sharing and it is long overdue for our public benefit system to allow taking an Uber or a Lyft to work as an IRWE, regardless of what other options are available in our community. I say this because it is far too common for people to work in places that are 30-35 minutes from home by car, however, when it comes to taking public transit or ParaTransit the commute to and from work can often be extended by 1-2.5 hours. Many people with disabilities can’t tolerate long commutes, especially for those of us with autism and other disabilities who get car sick or nauseous from being in the backseat of vehicles for long periods of time.
Other work incentive reforms we need to expand on are deductions for medical and dental services not covered by insurance.
Many adults with autism without Intellectual Disability do not qualify for Medicaid Home Community-Based Services, but for those people having access to job coaching and home support is still just as necessary. For someone with autism and anxiety, the ability to deduct things like massage, acupuncture, dental care cost, alternative medicine and the cost of independent direct support staff used during both work and nonwork hours are vital to being successful in the community.
Additionally, the Student Earned Income Exclusion should be expanded to young adults aged 22 to 29 so that more people with disabilities can attend college and training programs that may help them achieve greater economic stability and opportunity outside of the traditional jobs typically done by people with disabilities—like Food, Filth, Flowers, and Filing.
The silver lining of the COVID-19 pandemic is that it provides us with a once-in-a-lifetime chance to expand the social safety net for the disability community and end systemic barriers that prevent us from achieving true community inclusion and self-sufficiency, without the stress of benefit cliffs.
The era where being disabled is like a fulltime job must end. As allies and advocates we must fight harder now, more than ever, to make the lives of the disability community easier. In the long-term COVID-19 is going to create a larger population of people with disabilities and chronic health conditions as a result of Long Haul COVID.
The impact of this virus’s pandemic feels like it could be similar to the impact the polio epidemic had on society. It is my hope that we can use the lessons from this nightmarish pandemic to create a society that is more accommodating and accepting of disability. As the old saying goes, “It shouldn’t have to happen to you for it to matter to you.” If we all live long enough, we will all join the Disability Club. Climate Change and Disability are Not partisan issues, nor should they be.
Nicole is employed at the Human Services Resources Institute where she coordinates the Person-Centered Advisory and Leadership Group for the National Center on Advancing Person-Centered Practices and Systems (NCAPPS), ensuring that the Group informs and supports the direction of the NCAPPS efforts. She also helps develop cognitively accessible project materials and resources that reflect the experiences of people with disabilities. Since November 2017, Nicole has been the advocacy specialist for the Southern Region of Maryland where she assists self-advocates in dealing with the challenges of the service system. From February 2018 to September 2018, Nicole served as the Dr Ruth Sullivan policy fellow. From March 2018 to March 2019, Nicole was the SARTAC-Self Advocacy Resource and Technical Assistance Center fellow for NDRN where she created a booklet on advocating for policies that promote Competitive Integrated Employment (‘Real Jobs for Real Pay’).
Nicole LeBlanc was the 2019 recipient of the David Joyce Advocate of the Year Award by the Autism Society of America. The award is given to an individual with autism who has advanced the well-being of others on the spectrum.
What about people like me who aren’t capable of competitive gainful employment? I have autism, ADD, anxiety disorder, and complex PTSD as well as a hearing and speech processing issue which is very unusual resulting from head trauma at birth called expressive aprosodia. I have no control over my own speech except for the words I use. I’m not able to pick up on the volume, pitch, and tone of my own voice as well as that of others. I can pick up on accents since accents affect the rhythm of one’s speech in an aspect other than just the audible sound but that’s it. For someone like me, segregated work settings and sheltered workshops ARE ESSENTIAL. Self-employment IS ANOTHER OPTION. NOT EVERYONE is capable of competitive gainful employment. What’s the deal with disabled individuals and the ENCOURAGING OF ONLY COMPETITIVE, GAINFUL EMPLOYMENT? Why not ALSO ENCOURAGE SELF-EMPLOYMENT in the same way as an alternative option? Or better yet, ALLOW DISABLED INDIVIDUALS TO CHOOSE ONE OR THE OTHER? Why does self-employment not get the same aggressive attention and encouragement as an alternative option to competitive, gainful employment? What is up with that? Individuals should be free to choose and self-employment should get the same aggressive amount of focus, encouragement, and attention as competitive gainful employment gets. What’s wrong with self-employment being an alternative option? Competitive gainful employment isn’t the appropriate “blanket fit” option for everyone with every kind/form of disability. I’m one of them. What’s wrong with self-employment? Am I missing something? Not everyone is the same with the same goals and needs. As a result of that and with segregated work and sheltered workshops being taken off the table it’s as if failure is also being encouraged. What does that solve?
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