By Nicole LeBlanc
The writer, a resident of Silver Spring, is a disability policy and advocacy consultant.
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 to 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 subminimum wage. In addition, it has highlighted the need to ensure that essential workers like direct support providers, retail 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 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 was does not promote self-determination or support people with developmental disabilities in becoming self-supporting.
Lastly, segregated employment is system-centered not person-centered.
As we look toward the next 30 years of the American with Disabilities Act we need to raise expectations 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. Disability service system transformation can be exciting and scary at the same time, but it’s worth it.
Right now, the COVID-19 pandemic has given us the perfect opportunity to redesign our society and systems to be more inclusive of the rights and wants 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 often known as “Real Jobs for Real Pay.”
One bill of importance is the Raise the Wage Act that would raise the federal minimum wage to $15 an hour and end the practice of paying subminimum wage over five years. Another big bill is the Transformation to Competitive Integrated Employment Act that 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 for this to be successful it is vital that states invest in infrastructure to support disability provider agencies to develop person-centered employment programs that help get people with developmental disabilities jobs and careers in the community at minimum wage or higher.
One big piece of this is paying livable wages to direct support professionals and job coaches who play a major role in our success living and working in the community. People with disabilities, especially those who self-direct their services need staff stability in order to be successful 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 is 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 to 30 hours a week at $15 an hour you will hit the SGA, or substantial gainful activity, earning caps of $1,310 much faster than someone who is blind. For the blind community, the SGA earnings limit is $2,190 for 2021.
An easy way to solve this problem includes eliminating all earnings limits and just treat SSI and 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 SSI program your income goes down $1 for every $2 you earn. Using the $1 for $2 offset in the SSDI program would allow people with disabilities to earn more money and not worry about falling off the benefits cliff so fast. This is especially important for people with disabilities who live on their own in cities and states with very high cost of living.
Getting rid of benefit cliffs will also go along ways toward 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 is due to an overhaul is what counts as an IRWE in the area of transportation.
Currently you can only count taxis as an IRWE if you live someplace where there is no transit. If you live in a place where there is public transit you are expected to use it unless you get something from your doctor 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 10 years transit options have evolved to include Uber and Lyft ridesharing, and it is past time that our public benefit system allow taking Uber or 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 you can get to by car in as little as a 30- to 35-minute ride from home. However, when it comes to taking public transit or paratransit, the commute to and from work can often be 1 to 2.5 hours longer than it needs to be.
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 vehicles in the backseat 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 – like someone with autism and anxiety being able to deduct things such as massage, acupuncture, dental care cost, alternative medicine, and the cost of independent direct support staff used during both work and nonwork hours.
I say this because many adults with autism without intellectual disability do not qualify for Medicaid home-community-based services and having access to job coaching and home support is vital to our success in the community. For young adults the student earned income exclusion should be expanded to age 29 from 22 so that more people with disabilities can attend college and training programs that may help them achieve greater economic stability outside of the traditional jobs typically done by people with disabilities like food, filth, flower and filing.
The silver lining of COVID-19 pandemic is that it provides us with a great once-in-a-lifetime chance to make the social safety net for the disability community truly person-centered by ending 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 full-time 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 due to the effects of long-haul COVID.
In my opinion, the impact of this pandemic virus feels similar to days of the polio epidemic era. It is my hope that we can use the lessons from this nightmarish pandemic to create a world more accommodating and accepting of disability as a society.
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.