Happy Mother’s Day to all the caregivers out there

Many of whom are working the Second Shift, and will continue to do so for much of their lives.

Morning shave
Morning shave

On a more enjoyable, related note–Congratulations to my brother-in-law Vincent. He’s out of the hospital, infection healed, and has moved into a spiffy new group home.


Living large on the south side....
Living large on the south side….

“Is your pain a 7 or a 10?”

My brother-in-law Vincent is now off on a short hospital stay due to an infection. Decades of morbid obesity compromised the circulation to his legs. He’s thus susceptible to chronic infections and sores that require IV antibiotics and other interventions. The hospital nursing staff has been quite kind. Vincent is having a good stay, made more enjoyable by friendly banter with the kind and appealing nurses who are providing most of his care.

At some point in the evening, one of these nurses asked Vincent: “Is your pain a 7 or a 10?” Vincent responded with embarrassment, looking to my wife for an answer. He remembers all of the nurse’s names, but he does not know whether ten is greater than seven. He cannot process numerical information that way. Like many men and women living with intellectual disabilities, he requires different strategies for pain assessment. This is a well-known challenge, with many potential solutions.

This wasn’t a big problem, but it wasn’t unimportant, either. Vincent’s leg was hurting, and he wanted some pain reliever for it. And this mundane encounter underscored a broader difficulty. Doctors and nurses must come up to speed regarding people who live with  intellectual and developmental disabilities, not to mention people who live with communications disorders and related difficulties. These  issues are a part of life in 2016 America. We can do better.

Grand theft: Diet Pepsi
Grand theft: Diet Pepsi

How to make more good blue-collar jobs

If you’re looking for a silver lining in the dark cloud of the Trump candidacy, you might notice that it has brought some  attention to the worsening state of white people without a college degree. It’s not that the world is rosy for non-whites without college degrees, of course, but on average they were starting from a lower base; it’s the white part of the working and lower-middle class that seems to be experiencing fairly serious downward social mobility and social dislocation, as demonstrated most dramatically by increasing mortality rates in young adulthood and midlife.

Trump’s success in getting non-college whites riled up about immigration and trade doesn’t answer the question about how much of their plight can actually be traced to those causes, but it has served to remind advocates of the free movement of goods and workers that those policies produce losers as well as winners, and that one function of the political process is to ensure that a rising tide does in fact lift all the boats, rather than lifting the yachts while swamping the dinghies.

Megan McArdle lifts a libertarian voice to join the chorus. And she’s skeptical that income-transfer policies can fix things. (Though in my view we need them just the same.)  What the downwardly-mobile need, McArdle says, is not income per se as much as employment: “good work – by which I mean work that offers opportunity, stability, respect and enough money to raise a family.” And she argues that the answer can’t be turning working-class people into middle-class people by offering higher education to people “who don’t have the ability, preparation or inclination to sit through four years of college,” and that politicians’ other answers to the problem of bringing back good blue-collar jobs are mostly beside the point.

This is way outside my policy wheelhouse,  but from a distance this looks like a problem with a bunch of obvious solutions, though each of them is partial:

Continue reading “How to make more good blue-collar jobs”

Nine charts underscore the decline of disability services in Illinois

Pardon this Vox-like deep chart-dive, produced of course without Vox’s actual chops in this area.

Illinois attracts national attention because we are now enmeshed in a political and budgetary standoff between our Republican Governor Bruce Rauner and the Democratic legislative majority. It is a governance disaster. It has deeply damaged public services, along with our state’s bond rating and national reputation. We are now running large budget deficits caused by our unduly low and flat income tax, which is 11th lowest in among taxing states, and our chronically under-funded public employee retirement systems, whose bills are coming due.

Of more immediate import, we have had no state budget since July 1, 2015. We may not have one for the next fiscal year, either. Money still flows through Medicaid. Our embarrassing array of court-supervised services are still being funded. Outside of that, though, many other services are being seriously harmed.Nonprofits with strong fiscal reserves soldier on. Illinois owes Catholic Charities $25 million, for example. Marquis nonprofit and social service agencies have cut services or are simply closing.  The layoff notices sent to every employee of Chicago State University and the current nonpayment of promised state financial aid to 130,000 college students exemplify the harm to students and staff at important institutions of higher education who are injured bystanders in the continuing political standoff.

To resolve the current standoff, what must happen is as clear as the two-state solution in the Middle-East, and seemingly as difficult to achieve. Both parties need some dignified path to at least a normal interim budget. Illinois desperately needs a progressive tax increase. We must remove every fiscal policy provision and constraint from our state constitution. We must impose a higher level of professionalism and fiscal transparency within our broken state politics that have lost both their effectiveness and their public legitimacy.

Less well known are the serious challenges Illinois has faced since well before the current fiscal crisis. We have long ranked near the bottom in national rankings of intellectual disability services. In 2015, United Cerebral Palsy’s “Case for Inclusion” ranked Illinois 47th in the nation in the quality of state Medicaid services for individuals and families in the arena of intellectual and developmental disabilities (IDD). In many ways, we are slipping further behind.

I recently delivered an intellectual disability lecture at Lurie Hospital on Chicago’s north side. I heard about parents of children with special needs who are leaving the area. I heard stories of successful professionals moving just across the Wisconsin border and commuting to the Loop.

As a caregiver myself for someone with fragile X syndrome, I certainly sympathize with these choices. When my brother-in-law Vincent moved in with us in 2004, we were rescued by critical programs that have since been ended or curtailed. If he joined us today, we would face far longer waiting lists and would receive much more limited help. Although I love the opportunities and collegiality at the University of Chicago–and notwithstanding my low state income tax bill–I often wonder whether we should have left Illinois for a state that offers better services.

Consider the below charts, all but one of which are taken from the unique resource, State of the States in Intellectual and Developmental Disabilities. And remember, these data stop in 2013, well before Illinois’ current budget crisis. Continue reading “Nine charts underscore the decline of disability services in Illinois”

An anecdotal reminder of how we underpay direct care workers

The following anecdote comes courtesy of Kathy Carmody of the Institute on Public Policy for People with Disabilities.
An individual with intellectual disabilities, accompanied by a job coach, went on a job interview. Immediately following the interview, the job coach gave notice at his social service agency and took the job he had tried to get for his client.
The position paid better than he was getting as a job coach. I’m told that it’s not all that rare for job coaches to earn a lower hourly wage than their clients do.

Community Policing and Intellectual/Developmental Disabilities

Pardon this rather prosaic post on an important subject.

Increasing numbers of police officers and others in criminal justice have gotten the memo that the field must do a better job addressing individuals in mental health crisis. Men and women living with intellectual and developmental disabilities sometimes experience behavioral behavioral crises that bring them into contact with law enforcement. That’s a real problem, and there is a dearth of good training resources for the law enforcement community.

Many people in policing and criminal justice would benefit by watching this excellent training video. (Trigger warning–video includes a short passage of country music.)

It is a training session for the Tennessee Bureau of Investigation conducted by the state Department of Intellectual and Developmental Disabilities.

Bruce Davis, PhD, Director of Behavioral and Psychological Services and Steven Sutherland, Assistant Director of Incident Management, just did a terrific job. They cover a variety of issues:
–How to recognize that an individual may have an intellectual or developmental disability
–How to interact with individuals with I/DD
–Strategies to slow situations down, deescalate conflict, and use time and distance effectively.
–Specific health risks individuals may face under physical restraint, and more.
–Protecting the safety of officers and others during a behavioral crisis.

Dr. Davis and Mr. Sutherland do a real service in providing basic information most officers do not otherwise know.

Additional printed materials are available here. I hope law enforcement officials at all levels of government give these materials serious attention.

How to make a stupid party out of not-stupid people

If intended literally, references to the GOP as “the stupid party” are just nasty snark. I doubt that Republican office-holders or voters have, on average, lower IQs than their Democratic counterparts. Ted Cruz, for example, would seem to be roughly on a par, in sheer brainpower, with Barack Obama.

But there’s a deeper kind of stupidity that involves not only willful blindness to inconvenient facts – a tendency never far from human nature – but active celebration of that blindness. It is possible to make yourself stupider in practice than would be predicted by your score on the Raven’s Progressive Matrices. When that sort of rejoicing in folly becomes an accepted social practice within a group, it is fair to say that the group has a culture of stupidity.

Which brings us back to Sen. Cruz (J.D.  Harvard, magna cum laude). Using a warship as a political prop, Sen. Cruz went aboard the U.S.S. Yorktown for a national-security speech, which included the following remarkable sentence.

The last thing any commander should need to worry about is the grades he is getting from some plush-bottomed Pentagon bureaucrat for political correctness or social experiments — or providing gluten-free MREs.

The political point of the exercise, of course, was to make fun of “political correctness” and “social experiments.”

Now “political correctness” is an interesting phrase. Like “permissiveness” and “elitism,” it is designed to make a virtue (respectively, common courtesy and decency, liberty, and excellence) appear to be a vice. “Social experiments,” as used now, means integrating women and LGBT people into military service, as it once meant integrating African-Americans. In each case, the idea was to present an obvious act of justice as a risky venture.

It’s not hard to understand why some speechwriter – or perhaps Cruz himself – thought “gluten-free MREs” was a good punchline. “Gluten-free” has indeed become a rather silly food-label fad; no doubt many people are paying extra for “gluten-free” food who have no actual gluten sensitivity at all, and no doubt the marketers of such products are delighted to take advantage of their vague impression that gluten, like cholesterol, is something vaguely bad and to be avoided. And of course any food preference or aversion can be made to seem funny to those who do not share it: no doubt most South Carolinians think that eating kimchee and not eating grits reflect equally risible tastes, while most South Koreans think the same about eating grits and not eating kimchee.

However, as I was able to learn in less than five minutes of Googling, about 1% of the U.S. white population – and no doubt a similar share of servicemembers – suffers from celiac disease, and an unknown but probably larger share of the population suffers from other gluten-sensitivity conditions.

If you have the misfortune to suffer from one of these disorders, a gluten-free diet isn’t a joke, it’s a necessity. And it appears that most people who do so suffer aren’t aware of the source of their distress. Under those circumstances, and given that the military buys MREs by the carload and can easily get them made to any set of specifications, it seems obvious that, where logistically possible, gluten-sensitive servicemembers should be given food that is healthy for them to eat.

Again, Sen. Cruz is plenty smart enough, in the IQ sense, to be able to figure that out. If he’d taken a minute to think about it, he could have substituted “GMO-free” or “BST-free” for “gluten-free,” making the same point and getting the same laugh without making fun of people in uniform with genetically-determined digestive problems. But he couldn’t be bothered, and within the current culture of the Republican Party he will likely pay no political price for his blunder.

And that, my friends, is stupid.

Family challenges posed by fragile X syndrome

A post that has nothing to do with index cards….

Rebecca Feinstein and I interviewed 39 family caregivers of adults living with intellectual disabilities arising from fragile X syndrome. I presented some of our results at the annual meeting of the MacLean Center for Clinical Medical Ethics here at the University of Chicago. The sound quality of this 20-minute presentation could be a little better. It conveys some important challenges that individuals and families deal with every day. These interviews underscore how gaps in our social assistance systems impose high costs on many people.

These interviews also brought out one issue that is often overlooked: The safety issues confronting many family caregivers, particularly those caring for young men with a variety of intellectual or behavioral diagnoses. We discuss many other issues, too. So I don’t want to overstate the magnitude of the problem or have it overshadow more familiar concerns. I should add that our family not faced this issue in our own caregiving challenges. It is part of the mix.

This morning’s New York Times includes an excellent essay by my SSA colleague Matt Epperson on police encounters with individuals who are experiencing severe mental illness. Issues of intellectual disability need to be part of this conversation. It is often left out.

The California Bar Has Apparently Already Stopped Asking About Mental Health on the Moral Character Application–They Just Haven’t Spread the Word

(This post has been updated–scroll to the bottom).

After writing my prior post, I’ve been engaged in fruitful discussions both in comments and via email about the issue of law student mental health.  In one of these conversations, someone suggested going to the Bazelon Center website, telling me that they have a campaign about getting rid of mental health questions on moral character applications.  When I clicked through, I saw the following statement (without attribution) that “In California, the State Bar has removed its question asking about mental health diagnosis and treatment.”  For the past year or so, I’ve been talking to law professors, lawyers, disability rights/mental health advocates, law school administrators, and health care professionals throughout the state, and either people never knew there was a mental health question or knew about it, were upset by it, and didn’t know that it had been removed.  So it was news to me, and my reactions, in order, were:

  1. Yay!  (For reasons noted here.)
  2. Whoops!
  3. Why on earth is this information so hard to find/not more widely known?

The reason I care about this issue is to remove a barrier to law students in crisis getting help.  A recent national survey found that “at many law schools, students believe that seeking help for alcohol/drug issues or mental health problems will result in negative consequences for bar admission.”  Around half of students say they don’t want to talk to appropriate parties–including deans of students–for fear that it will hurt their chances to be admitted to the bar.  I want this information readily accessible, given that such a large number of students say they’ll avoid talking to me or other administrators.

But this information isn’t, I think, accessible enough to the average student (though it probably should have been to me). Continue reading “The California Bar Has Apparently Already Stopped Asking About Mental Health on the Moral Character Application–They Just Haven’t Spread the Word”