Hurry Up and Wait

The Wall Street Journal on 12/11/18 had a fun story on the creativity of pet tortoises, particularly when it comes to escaping their enclosures.. Harking back to the Aesop’s Fable, perhaps it wasn’t so much luck and persistence, but preparedness planning that was behind the tortoise’s ever-famous upset win over the hare. However, when it comes to getting disability services in Illinois (and many other states), you’re best off channeling all three: persistence, preparedness and planning—with a dose of luck. This is certainly true of approaching the waiting list for these needing services.

For decades in Illinois, people with disabilities and their families knew that there were way more people who needed services than those who were receiving them. It was difficult, however, to explain this need for more services—and more money—to legislators, because there was no actual way to measure the gap. Finally, the state launched the clumsily titled “Prioritization of Urgency of Need for Services” or “PUNS” database. If you are a person with a disability, who needs some kind of service (from a little bit of case management to 24-hour residential support and you need it any time from yesterday to 10 or 20 years out), you can go to your Independent Service Coordination (ISC) agency. For more details, go here. The ISC will complete and intake (enter you in the data base), and you are officially counted. Not infrequently, clients ask me what being on the PUNS list gets them besides the right to be counted. The short answer is: mostly very little, but sometimes a whole, whole lot.

PUNS is just a long-winded name for a waiting list. Illinois is not the only state to have one. According to a website, run by the Americans’ With Disabilities Act Participatory Acton Research Consortium (ADA-PARC,), more than 650,000 Americans are waitlisted for disability services, funded by Medicaid via the 1915 (c ) Medicaid Waiver. A Medicaid Waiver is a program that uses Medicaid dollars to support people with disabilities in a community setting as an alternative to nursing home care. Of the 35 states that have a waiting list, North Dakota takes the prize for the shortest (3 people) and Texas for the longest (with more than 230,000) in 2018. Nine states and the District of Columbia have no waiting list at all for this Waiver, and three states use a different kind of Waiver and thus did not have data on the site. Illinois, my home state, is somewhere in the middle, with close to 20,000 individuals counted as waiting.

It must feel rather hopeless to think that you are the two-hundred-and-thirty-something thousandth person on any list. Being the almost-twenty-thousandth person is better by comparison but only in the way that breaking just one arm is better than breaking all four limbs. But as unlikely as it may seem, people do go off the PUNS list as well as onto it. There are two ways for this to happen. First, you can be moved from your existing PUNS category of planning (= need the service(s) in 1- 5 or more years) or critical (= need service(s) within 1 year) to EMERGENCY (= need service(s) right now). It is said by the more skeptical ones in the field that the only way for a person to be reclassified as emergency is for that person to be in immediate danger of abuse, neglect or homelessness. Actually, it is not quite as stark as that, but it does mean your situation has to be pretty dire: significant ageing and debilitation or financial, behavioral or medical hardship for you or those who provide you support.

Second, you can be selected randomly. If this sounds like the exact opposite of the above—having almost no criteria rather than catastrophic criteria—it actually is. The reason for this second selection process is because the state of Illinois was socked some years ago with three class action law suits that were determined in favor of the plaintiffs that the state was not removing people from the PUNS list fast enough. As a result, the state was compelled by a judge to remove from people from the PUNS list by providing services for people over and above the number of people, who start receiving services through emergency reclassification. You can go here: to see the breakdown of people removed from PUNS due to other-than-emergency criteria. You can get a lot of other information about PUNS here..

The Journal story chronicles tortoises that tunnel deep, climb high, seize the moment of the opened gate and brave fast-moving traffic to meet their needs. They put in a lot more effort than Aesop’s tortoise, who just waited for the right moment. Putting yourself or your loved one on the PUNS waiting list, and then going back at least every year to update your situation and your need for services lays the groundwork in case you fall into the tunnel under or climb over an unexpected emergency or in case you are so fortunate as to get pulled through the open gate of random selection.

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