Learn What You Don't Know


When I was in fifth grade, my best friend and I used to play a game called “But what you don’t know is…” You could play it entirely verbally or with pencil and paper for visual effects. The game was one of simple one-upmanship. I would say, “You walk into the swimming pool, but what you don’t know is, a massive tidal wave is going to come up and swamp you.” And my friend would counter, “But what you don’t know is that I have invented a tidal wave deflector shield that sends it right back on you, but the wave is now magnified.” And I would return, “But what you don’t know is that I have reverse ray-gun that will suck up the deflected energy and feed my radioactive tarantula, which will come after you.” And so on. Trying to work within the parameters of governmental programs can feel like playing that game.

Last Wednesday, I had the privilege to attend The Supported Employment Action Team Summit, co-hosted by the Illinois Council on Developmental Disabilities, the ARC of Illinois, the Sibling Leadership Network, The Illinois Self-Advocacy Alliance, and the Illinois Assistive Technology Program.

As a financial planner, I was at the summit because one significant barrier to employment for people with disabilities is the misinformation and complication that people with disabilities, their families and the workers (who support them) face, when it comes to the interaction of work and the government benefits, particularly Medicaid, that fund adult services. There is a prevalent notion that people with disabilities who receive medical and/or support services, that are funded by Medicaid or through Medicaid Waivers, cannot work too much or they will lose their Medicaid and their services. The notion stems from the fact that Medicaid is a means-tested benefit, and one must meet income requirements in order to get it and to keep it.

Ultimately, this is true. However, it is equally true that although the initial earnings threshold for Medicaid for a single person under the “Aid to the Aged, Blind and Disabled” (“AABD”) Medicaid is $1,012 gross per month, and the limit for Expanded Medicaid under the Affordable Care Act (“ACA” or “Obamacare”) is $1,396 gross per month, there are also Medicaid Work Incentives that allow people (with disabilities who work) to earn $3,541/month or $42,492/year. And that figure is NET, meaning only what is left after Federal, State and Social Security and Medicare taxes is what counts. Yet, if a person with a disability can potentially earn in excess of $43,000 a year and still keep Medicaid, then WHY are so many people with disabilities and their families afraid to work much? There are two reasons:

  1. It takes time and effort to research the eligibility criteria for the work incentives and even more time and energy to apply and get approved to use them and…

  2. There is wide-spread misinformation that certain people with disabilities, due to the funding of their living situation, cannot use the work incentives.

An example of reason number one is a friend and client of mine. A very smart and talented woman with a master’s degree, this woman was already receiving Medicaid Waiver-funded personal assistant services when she was offered a full-time position at a career-level salary. It took eight weeks of hard work on the part of her, me and multiple professionals at the Department of Human Services, the Department of Health and Family Services, and an employment-specific consulting firm for this person to move herself from the ACA Medicaid into which she had been enrolled initially to a program called Health Benefits for Workers with Disabilities (“HBWD” also known as “Medicaid Buy-in”). For a small premium, my friend and others can keep their Medicaid services while earning up to $42,492 in after-tax income. As an added benefit, they can have $23,000 more in countable resources than they were allowed under the initial Medicaid criteria.

An example of reason number two is another friend of mine, who lives in a Community Integrated Living Arrangement or “CILA”. CILA services are funded through Medicaid Waiver. This friend really enjoys his job at a local supermarket. He is an excellent employee and both he and his boss would like him to work more hours. However, the agency that provides his CILA services was told that he could not use HBWD as in example one. Nor, they were told, could this young man make use of another Medicaid program called “pay-in/spenddown”. Pay-in/spend-down allows people with disabilities, who either have Medicaid services to maintain their Medicaid in any month that they pay for Medical expenses or personal care services equal to or in excess of the difference between their income and the income limit for their Medicaid category. So, if my friend has an AABD Medicaid income limit of $1,012/month but earns $1,412/month, then the amount he would need to “spend down” every month would be $400, which is similar to an insurance deductible. Since the cost of the Waiver-funded services themselves can be applied towards the spenddown, all the services the agency has provided and then billed to Medicaid, could be applied against my friend’s spenddown and would more than cover it. Except, he was told he could not do this.

I might have thought that it was an isolated occurrence of misinformation but I soon found out that it wasn’t, were it not for a conversation I had at the summit with someone, who worked in the employment division of a very large disability-service provider agency. She had been told the same thing on behalf of people she supported, who worked and also received CILA services. She was told that these people could use neither the spenddown nor HBWD and thus must instead limit their working hours. A few phone calls later, an administrator at the Illinois Department of Human Services, whose responsibilities include, specifically, “Medicaid Waiver Issues”, confirmed what I had expected. People with disabilities CAN access pay-in/spenddown, Section 1619(b) (which is a program that allows people who had been receiving both SSI and Medicaid to continue to receive Medicaid up to a gross income of $27,462/year) and HBWD regardless of their living situation and support needs.

It’s my job to get this information on behalf of clients, even if it takes hours of calls and email. For most people with disabilities who work, their families and their support workers do not have that amount of time to invest or the experience to know when they are being misinformed around these programs. To help make Employment First a reality, we need to 1) educate everyone that and how people with disabilities can engage in significant work and still keep Medicaid services and 2) simply the process for accessing Medicaid retention programs so that anyone can do it in a reasonable amount of time. Thus, we can then say “But what you don’t know is that I can indeed work more and retain my needed benefits through these specific programs, so I can retain my safety net and my livelihood”.


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