You can’t, I will

“You can’t…”

It all started with the words “you can’t.”

Those are two words that never sat well with me. I’m not sure if it’s because I come from a long line of strong-willed, hard-working individuals; because I am an only child; or because I had to fight for everything due to my disability. No matter the reason, “you can’t” is the spark that ignites my knee-jerk reaction of “I will.” This is potentially where Act 69, Medical Assistance for Workers with Disabilities; Workers with Job Success, began.

According to Cornell University, false imprisonment occurs when “the defendant willfully acts, intending to confine the plaintiff without the plaintiff’s consent and without authority of law, defendant’s act causes the plaintiff’s confinement, and the plaintiff is aware of his/her own confinement.” This definition clearly describes the impact that income and asset limits have on individuals with disabilities who require Medicare, Medicaid, and Home and Community-Based Services (HCBS). The only difference is, it is not only lawful but it was also established by the government. Being dependent on governmental insurance (which provides care and coverage that are not available through any other means), entails being imprisoned in poverty in order to not jeopardize life-sustaining care.

Individuals who require Medicaid waivers for Home and Community-Based Services do not have a choice on whether they “really need” these services, where to get them, or how to pay for them. According to Medicaid.gov, “eligible individuals must demonstrate the need for a Level of Care that would meet the state’s eligibility requirements for services in an institutional setting.” In other words, eligible individuals do not have the choice of whether to receive services or not, it is just the location. Both methods of service provision are expensive and not covered by private insurance, so the only true choice is whether people would prefer living in poverty while receiving services in their home or living in poverty while living in an institutional facility.

The presence of a disability does not imply inability. Further, an individual who requires support for activities of daily living may still have the ability to work, own a home, get married, and be amazing parents. This has become increasingly true with the improvements of medical technology, assistive technology, and the ever-changing world of work. People, like myself, who may not have survived childhood 50 years ago are not only growing into adulthood, but they are also prepared to work and thrive.

When I was growing up, pursuing higher education and employment was never a question – it was assumed. No one told me to not work so hard in school, to not be valedictorian, or to not get my degrees and pursue my dreams. But that is exactly what the system is set up for people with disabilities to do – to prepare them to be successful but not actually permit them to achieve success. We, as members of the disability community, are not imprisoned based on our own barriers but the false imprisonment created through income and asset limits.

Individuals who rely on Medicaid and HCBS can earn up to $1,300 before jeopardizing their life-sustaining care. This is $1,500 below Federal Poverty Level for a one-person household. Even if an individual has a part-time job and is not at risk of hitting the income limit, they are continuously questioned and warned about the threat of losing services. The constant reporting, accounting, and warnings of potential loss of care strongly encourages individuals to not pursue employment at all. As humans, we naturally choose survival over income and the threats to these life-sustaining services hit on our instinct to survive, forcing people to choose to live in poverty.

Poverty is not a statistic on how much money is in a person’s bank account or how much they earn. Poverty is a prison. It determines a person’s housing, ability to move around the community, range of opportunities, and safety. In a capitalist society, money is power and thus poverty means the lack of power including self-determination. If poverty directly impacts an individual’s power, the system is set up to falsely imprison the very people that it is meant to take care of.

Nothing can ignite someone’s fire like telling them they can’t work after they spent 11 years in higher education. But this time, “you can’t” was very real and serious to me. Threatening my eligibility for Medicaid and HCBS stopped me in my tracks. I knew that I could not live without this support and so, I too became a prisoner of the system. This was the beginning of Act 69.

Pennsylvania had a Medical Assistance for Workers with Disabilities (MAWD) plan since the 1990s. It allowed tens of thousands of individuals with disabilities to work and save more than they would be able to under basic Medicaid. Pennsylvanians could only receive Medicaid and waiver services if they were earning up to 250% of the federal poverty limit (minus standard Medicaid deductions) and have up to $10,000 in assets if they were enrolled in MAWD. This program was a significant improvement from the basic Medicaid standards however continued to greatly limit an individual’s ability to pursue job promotions, save money, and even get married; forcing them to once again be falsely imprisoned to the system. These restrictions called for a significant change in the system.

That changed happened when Act 69 was unanimously supported and signed into law on July 1, 2021. It will officially take effect on December 29, 2021. This bill creates a new category for individuals who receive Medical Assistance For Workers With Disabilities (MAWD). When individuals reach the previous MAWD income limit, they can be enrolled in this new category called “Workers with Job Success.” A person in this new category will be able to earn up to 600% of the federal poverty level (minus typical Medicaid deductions) and have unlimited assets. Individuals in this category will pay 7.5% of their income as the insurance premium but it will allow them to keep their Medicaid and Home and Community-Based Service waivers. If an individual hits 100% of the federal poverty level, they will be required to pay the full state premium but not lose services.

This bill will eliminate the actual chains of imprisonment made from the income and asset caps, while also eliminating the threat of the possibility of losing them. This will allow people to earn and save more, while removing the fear that has prevented so many from considering employment.

This bill solves only the beginning of a larger problem faced by people with disabilities. Our community is still largely controlled by systems of false imprisonment. Some are created by systemic red tape while others are as fundamental as a lack of access. Until society sees these barriers as actual infringements on our civil rights, we will continue to need to justify our need for support and access to pursue a full range of opportunities. In other words, to achieve true equal justice.

Dr. Josie Badger
#IWantToWork Campaign Manager