Disability, Employment, Personal Care

Chutes and Ladders: Obstacles on the Journey to Employment For Personal Care Users

I do not actually remember the game Chutes and Ladders. I remember that there were chutes, and I remember that there were ladders, and I remember that there was some method of following a path based on a die roll to get to a finish line. It is entirely possible that both chutes and ladders were positive things, but for the purpose of this blog post, I am going to choose to remember that the ladders were a positive climb up, and the chutes a precarious pitfall that you hoped to overshoot with your die roll. The analogy works for me, so I am going with it.

One day a few years ago, I got a call in my New York office from a woman who heard that I was a working professional while using significant amounts of personal care. She was distraught, for she had just been offered a good job, making in the vicinity of $80,000.

Why, you say, should she be distraught? This sounds like good news. Alas, she was an individual with a disability who received her almost $100,000 per year of annual care from New York Medicaid. Further, under New York eligibility rules, if she made more than about $60,000 per year, (this year’s number is $59,388) she would lose her Medicaid. $80,000 was not enough to pay for care, let alone care plus living expenses. This Ladder had become a chute which would have made her unable to maintain her life. I did not have a solution at the time, save that my annual salary was $230,000, and that was how I paid out-of-pocket.

Around that time, I made a friend, a resident of New Jersey. He too, had a good job, and though not eligible for New Jersey’s Medicaid buy in, which had an even lower threshold than New York, as a former recipient of SSI meeting certain other conditions in New Jersey, he was eligible for Medicaid through a program under section 1619(b) of the Social Security Act. If you follow the link, you will see that this program allows individualized determinations of eligibility disregarding earned income for certain classes of people, including those dependent upon personal care. A little loophole though, is that, other than an exemption for earned income, he needed to meet all of the eligibility requirements for SSI, including making sure that his assets never exceeded $2000. This is not a typo. $2000, a threshold set in the 1980s and never changed. To receive his care, he could not save for retirement, or even create a decent contingency fund. These well-recognized ladders to financial success would have been chutes. His disability progressed, and he had to leave that job, and is now living primarily on fixed income. I wonder if that would have been the case if he had been able to save prudently, and invest.

I recently moved to Massachusetts, and did so precisely because they it is the only state I have been able to identify where eligibility for the personal care program is not precluded by income or assets. By happy accident, I applied for Medicaid while still officially making my law firm salary of $285,000 per year, so I have some interesting numbers. Massachusetts has a premium for people with disabilities above certain incomes that receive services. By way of example, had I been making $285,000 by the time I actually became eligible for Medicaid, I would have paid the monthly premium of $3650, but I would have had services.

Let us do some math. I submit that, in round numbers, my care will cost the State of Massachusetts $54,000 per year. Incidentally, I am by no means one of the most expensive recipients of care, but my own numbers are the easiest for me to access. I submit that there are few if any jobs that I could get in Massachusetts given my current realities (which still make me more employable than 99% of Americans) that would allow me to part with that much money out-of-pocket per year. As such, Massachusetts will be the guarantor of my care whether I am employed or not. This fact becomes even more immutable for others as care needs rise and income potential drops. Let us assume for a moment that if I were making $200,000 per year, my premium might drop to $3000 in Massachusetts. (I have made up this number, but it is not out of line with the numbers above.)

If I lived in New York, I would likely have to leave my $200,000 job because of difficulties paying for care and all other disability costs, even at 200,000. For instance, the rent on my accessible apartment with 24 hour building staff to limit my need for personal care was almost $3700 per month. If I lived somewhere cheaper, I would probably need more care to make up for lack of services. (Actually 200K might be just enough, but I am trying to work with round numbers.) Thus, New York would be on the hook for $54,000 a year of my care, plus likely subsidized housing, while the federal government would pay SSI or SSDI, and likely Supplemental Nutrition Assistance, all to allow me to live with an income of zero.

In Massachusetts, I would keep the job. I would pay $36,000 a year of my care, with Massachusetts picking up the other $18,000 plus assorted medical costs. Since I would be earning a good salary, I would pay my own rent, or mortgage since I could have assets, and I would not need to collect social security or nutrition assistance. Further, I would be paying taxes, so the net costs to the taxpayer would be even lower.

In this scenario, literally everybody wins. I win because I get the benefits of work, of Independence, and of disposable income, all while receiving the care that I need. In a period of decreased work, like the one I am currently experiencing, I would have savings to get me through. The taxpayers win because my ultimate price tag is probably less than a quarter of what it would be in another state, all while I am paying taxes, reducing the net impact. My employer wins because they get my labor and my talent. Society wins as we add to the population of productive adjusted members, decreasing dependence and poverty while increasing hope. By eliminating the chute, we all get to ride the ladder together.

Most states provide some kind of personal care, and those that do not provide institutional care, which is even more expensive and filled with other horrors and drawbacks that I will write about in another post. Only Massachusetts has set out this path to winning through work. I can literally see no justification for why it has not been adopted in every State save inertia, and ignorance of the financial realities. Unlike the need for more funding inherent in yesterday’s post regarding Personal Care, there is no state that would not save money, they just do not know.

So my reader, I share these facts with you. Share them widely. Share them with decision makers. Push for change. We will all benefit.


3 thoughts on “Chutes and Ladders: Obstacles on the Journey to Employment For Personal Care Users

  1. Pingback: Finding My Voice: A Look Backward, A Look Forward, and A Request | Matan Koch's Blog

  2. This is something I’m facing as a person with a permanent disability (quadriplegia) who is trying to find a way off government assistance. With all the oppressive rules that are required to qualify for the care we need, I don’t feel like I’ll be a truly free citizen of the US until I can afford to pay for my care on my own.


  3. Pingback: A Little Fire for the Engine of Change: The Driving Power of Love and Outrage | Matan Koch's Blog

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