All I want is a job

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!

The Unkept Promise of the ADA

 As we prepare to celebrate the 25th anniversary of the Americans with Disabilities Act, I am very introspective and do strongly believe that we've made extraordinary gains in community living, access to public places, including transportation and telecommunications but we're still the poorest minority group in the world. Here in the US, 80% of people with disabilities don't work. We've been lulled into thinking that life on SSI or SSDI, hence poverty, somehow is sufficient and has become the norm. By default, poverty is our lot in life, never having more than $2000 in the bank at any one time and fighting for precious subsidized housing. Living on $9000 a year keeps us from the basics of the so-called American Dream; working hard to save money to buy a home, provide for our families, and generally achieving success and prosperity.

I spoke to a group of young adults with disabilities last week and asked them if they thought living in poverty was an acceptable future for them and, to a person, each was vehemently opposed but when I asked if they knew about SSI and either had it or wanted it, most everyone thought it was a good idea. As leaders, we've failed young adults by not mentoring them early in their lives to build leadership and set the bar higher than a life of poverty. On some level, it's our fault but naturally, there's much more to the story. The Social Security rules are completely biased toward a future on the public dole by penalizing people when they go to work in such a way that the fragile foundation beneath us is pulled out completely. It's too black and white and there needs to be a less risky path out of benefits to employment that rewards work. The same is true of Medicaid especially if you rely on it for Long Term Services and Supports like personal assistance. If you go to work you lose your Medicaid and your support system goes away.

 Both systems have tried projects and initiatives to encourage employment and provide an opportunity to keep some or all of your benefits but, in general, they've failed. So, as a community, we need to redouble our efforts to push for full employment and I can't think of a better time to make that commitment than now. Let's fulfill the promise of the ADA and bang away at the systems that have marginalized us and kept us in poverty. Let's work with the Congress and the president to start over and completely revamp Social Security, Medicaid, Vocational Rehabilitation and Labor and Workforce Development to create and keep a permanent pathway out of poverty and into mainstream employment.