I am a person with a disability, and have been since age 16 when a wrestling injury left me paralyzed from the shoulders down. I have a master's degree, a full-time job and yes, I'm one of more than 8.7 million Americans with a disability who rely on the long-term health care services provided through a government program called Supplemental Security Income, or SSI.
This news must be bewildering to people who don't realize that you CAN have a job and maintain access to federal health care benefits. I'm alluding in particular to a recent New York Times article titled "The Disability Trap," which says 70 percent of people with disabilities are living in poverty, partly because federal benefits like SSI de-incentivize their return to work.
Let me explain and debunk some of the myths surrounding the SSI program. The New York Times article profiled Brad Crelia, a man with a blood disorder, which he says makes full-time work impossible for him. Crelia says in order to remain eligible for health care services through SSI, he must prove that he is physically unable to work and cannot earn more than $85 a month in income.
This is simply not true; SSI does not prohibit beneficiaries from engaging in work. This is a critically important message to disseminate because we already have a grossly low employment rate of working-age Americans with disabilities. If this group truly believes they cannot work while collecting much-needed health care benefits, they'll choose health benefits over work.
My journey into the workforce did not come easy. Acquiring a significant disability at a young age certainly changed the way I got things done, but it did not change my plans for the future. I finished high school with my class and went on to get my bachelor's and master's degrees. I turned my internships into jobs starting at 23 years old, and I have been working competitively full time ever since.
My eligibility for federal benefits began shortly after I had my wrestling injury. Being a teenager, I was fortunate enough to have impeccable health insurance under my parents' policy. I had access to the best medicine and surgeons in the world. My parents' policy paid for a large chunk of the medical costs, but also left a significant portion to be paid out of pocket.
In any event, my parents' policy "maxed out" in the first two years after my injury; the insurers stopped paying my providers for their services, a term known as capitation. This left me with very few options at the time, other than Medicaid. (The new Affordable Care Act will remove the ability of insurers to cap services on patients.)
In these types of situations, your only option is Medicaid. Medicaid is the payer of last resort, a program that only applies to individuals who are both medically and financially needy. The only way you can become eligible is to have a significant medical condition, low income and assets of less than $2,000 (barring a few set-asides).
When I finished graduate school I wasn't entirely sure how employment would impact my access to health care coverage. Let's face it, if you need access to long-term care in order to live independently due to a medical condition or disability, you will jump as low as you have to in order to maintain eligible. This started my quest to understand the programs and the policy impact of employment.
Now I'll put my policy hat on and explain what I learned.
I discovered that SSI provides a variety of work incentives, such as a 2-for-1 reduction on all earned income. This means participants who work can gradually earn their way off cash benefits while maintaining their health care coverage, meaning you're almost always better off working.
I also learned that individuals with high Medicaid costs can earn up to the combined amount of an annual SSI cash benefit, plus their actual annual Medicaid cost, and still maintain their eligibility for health care under the SSI program by requesting what's called an individualized threshold. This allows for a significant amount of earnings for individuals like me with high long-term care costs. My employer's private insurance pays the bulk of my care leaving only the long-term care costs for Medicaid.
Here's more good news: 42 out of the 50 states have developed Medicaid Buy-In programs, which give workers with disabilities the opportunity to "buy into" Medicaid at higher income and asset allowances than traditional Medicaid. Medicaid Buy-In programs have helped more than 150,000 individuals with disabilities nationwide return to work. Similarly, SSI's work incentives have allowed more than 318,500 individuals with disabilities to return to work.
Yet these programs are still underutilized because people with disabilities aren't getting all the information they need to make smart decisions. For example, The New York Times chose two leading policy analysts, Dave Stapleton and Richard Burkhauser, as sources for its opinion piece. Both are intimately familiar with the SSI program, and both spend a lot of time telling Washington -- inaccurately -- that work is not an option on the table under SSI.
Sure, the SSI program would benefit from minor tweaks to serve beneficiaries more appropriately, but it's not necessary to stage a massive overhaul in order to effect change, as these economists suggest. If that were true, I would have never been able to maintain full-time employment and an income level and pace far greater than the national average.
People with disabilities can and do work -- and at high levels, while continuing to have access to long-term health coverage. At my organization, Health & Disability Advocates, we dedicate our days creating such solutions with states across the nation. We're thrilled that the Affordable Care Act will give people with disabilities more options for health care coverage than ever before.
My suggestion to Mr. Crelia and others who are still on the fence, please contact me. You deserve better information than what you're getting, and you deserve a chance to work.
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