Disabled people are the most oppressed and marginalized group of people in the world. Here in the US, the stigma of disability is pervasive; the media either portrays us as helpless cripples or superheroes for doing everyday things. We're also the poorest with the highest rate of unemployment. Well over 90% of us are on federal public benefits receiving just under $9000 a year on SSI with an unemployment rate of 30%.
Most of us live in public subsidized housing, rely on Medicaid or Medicare as our primary source of healthcare and Long Term Services and Supports (LTSS) and struggle with food insecurity. State legislatures and the Congress generally view us as "takers" with little or no value to society. This is evident by heartless cuts in Medicaid, housing, and the constant threat to cut Social Security benefits.
For the most part, unless you're wealthy, if you want to break the cycle of poverty and get a job it's generally a nonstarter. Because the laws are so archaic and geared toward providing helpless people with a subsistence existence and "taking care of us," we're trapped in a system that penalizes us for working. If you go to work you have to give up Medicaid which is the primary source of LTSS like Personal Assistance Services, drug benefits and Durable Medical Equipment (DME). Even if a company offers health insurance, it doesn't cover LTSS and appropriate DME.
Then there was the fight for the Ticket to Work Incentive Act (TWIIA) in 1999 that would address the barriers associated with working and continuing to receive Medicaid. On some level it did and the Medicaid Buy-in (MBI) was created so that disabled people can essentially buy Medicaid by paying a premium and work at the same time. Radical in its day, the devil was in the details and how states decided to implement it. Today, most states have anemic MBI programs that don't allow for a decent salary and or realistic assets. So, disabled people who do venture into work generally earn less than $40,000 per year and can only have limited assets; slightly better but certainly not what we wanted. To rub salt in the wound, we later realized that if we had to stop working for any reason, we have to "spend down" our savings and return to poverty in order to continue receiving Medicaid. And, the last nail in the coffin, the deceptive Estate Recovery provision; whatever earnings you've accumulated and saved throughout your working years are "clawed back" by state Medicaid agencies when you die. Your estate is on the hook for whatever was paid by Medicaid from age 55 on.
No wonder people with disabilities are unemployed. Who wants to work hard for a living and have the government take your nest egg and retirement money away if you can’t continue working and from your estate when you die?
Although this seems like an impossible situation to actually do something about, it's imperative that we come together and push elected officials to have government take its foot off our necks and let us work and have affordable healthcare and LTSS. We can't tolerate another minute of being forced into poverty due to federal legislation that doesn't reflect reality and inextricably links disability with work. The disability community desperately needs to agree on a strategy to separate work from disability legislatively. By unlinking the two, legislators and advocates can agree on legislation that promotes employment for people with disabilities and doesn't tie income and assets to eligibility for Medicaid for disabled people that work.
Just like other oppressed groups, if we lift ourselves out of poverty, we'll have endless opportunity to live a good quality life.
Onward!