Psychiatric lockout: making the toughest love choice
April 20, 2016 4:59 PM   Subscribe

A growing number of parents in Illinois who are unable to access necessary mental health treatment through Medicaid are voluntarily abandoning custody to the state so their children can get the care they need for severe mental illness.

In Illinois, a state where a smaller percentage of children receive psychiatric care than the national average, a crisis of rising numbers of such "psychiatric lockout" cases in recent years prompted a new law that went into effect on January 1, 2015. The law was intended to create a way for desperate parents--many of them adoptive parents of high-needs children--to obtain much-needed long-term residential treatment for their children without resorting to this drastic measure. But some say that the law's mandates have not been implemented, and the most recent data seems to indicate that the number of psychiatric lockouts continue to rise.
posted by drlith (16 comments total) 13 users marked this as a favorite
 
This is so tragic. We need much better health care available to everyone and it should include psychiatric care. Imagine what happens to the kids who don't have devoted mothers like this kid.
posted by mareli at 5:52 PM on April 20, 2016 [3 favorites]


It pains me to say it, but things don't get more American than this. I think the next step from here is loading the poor and disabled into dumpsters and setting them on fire. I mean, we're already locking them up in prison and forcing them to perform slave labor for corporations like Whole Foods.

This is just another day in America.
posted by gehenna_lion at 6:18 PM on April 20, 2016 [18 favorites]


ghenna_lion, got a source on the Whole Foods thing? We do allow so-called "sheltered workshops" to operate, segregated settings where people with disabilities can be paid less than minimum wage, which is incredibly discriminatory, but I'm not aware of WF operating one of those.

Goodwill, yes, but not Whole Foods.
posted by gauche at 6:26 PM on April 20, 2016 [1 favorite]


Mental health in the state of illinois is dismal for adults and kids. There is Just nothing left but places that take insurance for the well off and insured who are willing and able to throw thousands of dollars for treatment.

Everything else is badly hurting or just gone.
posted by AlexiaSky at 6:26 PM on April 20, 2016


ghenna_lion, got a source on the Whole Foods thing? We do allow so-called "sheltered workshops" to operate, segregated settings where people with disabilities can be paid less than minimum wage, which is incredibly discriminatory, but I'm not aware of WF operating one of those.

Goodwill, yes, but not Whole Foods.


Looks like Whole Foods has promised to stop using prison labor for some of their products. Of course knowing corporate America, it could be one of those decade-long phase outs. I shudder to think how many things are made by prison slave labor these days.

It's sad how normal things like this seem these days. We've become a twisted, warped people in this country.
posted by gehenna_lion at 6:28 PM on April 20, 2016 [12 favorites]


Mareli what happens to these kids is they turn 18 become homeless spend the time on the streets and bouncing around jails, psych hospitals and emergency rooms, until they become older and chronically sick and the state decides taking care of the reoccurring medical needs due to mental illness and homeless are more expensive than paying them to be housed with supportive services. .. oh Rauner cut the supportive housing budget to zero. (It is complicated to explain what is actually happening with supportive housing atm)

So they just bounce around homelessness and short term institutions until they die.
posted by AlexiaSky at 6:32 PM on April 20, 2016 [5 favorites]


Until very recently I was working as an impatient child/adolescent psych nurse, at a public institution of last resort. I'm unfortunately all too familiar with this practice and its necessity. Here in Texas it's called a RAPR-- Refusal to Accept Parental Responsibility-- but it works pretty much the same way. You talk it over with the parents at a series of heartbreaking meetings, and then together you set a "discharge date." Everybody knows that the child cannot reasonably be cared for in the home with the available services, and when the day comes the parents refuse to pick up their kid. CPS is forced to take custody, and has access to a range of services the parents don't, including long-term rehabilitation facilities for kids who just can't be fully in the community.

For their part, CPS usually does a good job of keeping the parents involved while maintaining conservatorship for the benefit of the child. But they do ultimately make the calls, and the whole process is really upsetting for both parents (who feel like they are abandoning their children) and the kids (who don't always understand why their parents have ceded custody).

There is a really tremendous dearth, nationwide, of services for children who need more than occasional counseling or first-line depression medications. These kids need things like long-term intensive out-patient therapy, OT/PT/speech therapy, and/or many hours of properly-trained in-home care. And proper medication management often requires someone with a specific specialty in pediatric psychiatry, which is rare (and pricy). There are also children who actually do need to live in long-term care facilities, which can be impossible to find in a system that disfavors institutionalization.

Fuck. I mean, it's just horrible all around.
posted by bookish at 6:35 PM on April 20, 2016 [36 favorites]


This happened to my brother in Louisiana when I was a kid. The story is a tad more complicated ( my brother got kicked out of both adolescent dual diagnosis units in the state and then ended back up with my mom but she didn't techically have custody of him in the states eyes. He maintained eligibility for medicaid despite my parents income due to the court orders)

It is tragic how these things work out.

(For the record my brother seems fairly well adjusted now)
posted by AlexiaSky at 6:42 PM on April 20, 2016 [4 favorites]


I listened to the radio broadcast of this story on the way home. Every bit of it was awful but the most horrific part of it was how, after she made the excruciating choice to go ahead with the psych lockout and give up custody of her son because that was the only way the state would provide residential treatment, the state then sued her for neglect and tried to take away her daughter too. It's sick.

And then the state finally realized it was a problem and passed a law to change it, but because there's NO STATE BUDGET, it's functionally unenforceable and the psychiatric lockouts are continuing at full steam.

These folks don't want to give up their kids. It's awful for them and worse for the kids. They just want help.
posted by telepanda at 7:55 PM on April 20, 2016 [6 favorites]


I've worked in acute settings where a pervasively developmentally disabled child or adult has "lost acuity", which means that Medicaid will basically no longer pay for their care in a hospital (and many end up staying for many months, which can seriously impact the budgets of smaller hospitals). They have stabilized as far as they can back to a very low or fragile baseline and are unlikely to benefit from further hospitalization. But they have nowhere to go because if discharged, many literally couldn't manage to get to or on a bus or taxi safely on hospital grounds and they probably have no living arrangement available except a shelter. If they have family, many times the family can't or won't take them. Or whether or not something like a "lockout" has taken place, they are Conserved or in Guardianship, which means they can only be discharged to a specific kind of facility and not "the community". Many long-term residential facilities are reluctant to accept people with histories of significant violence or self-injury, or coming straight from an acute Psych unit because, you know, "Psych". And Medicaid is federally blocked from paying for or matching State funds for long-term psychiatric rehabilitation or vocational training (ie, "deinstitutionalization"). In some smaller hospitals, a majority of the acute psych bed slots can easily be filled with such unfortunate individuals. Which means that the currently acute psychiatric patients are languishing in emergency rooms for too long, or being discharged back to the street because they can't get entry.

It's a huge problem that is broken at many stages along the care path - much of it stemming from the very low and restrictive funding system with deliberate blocks emplaced, many of them decades ago to address social issues that are no longer as relevant. When I meet families who are engaged and they don't know about NAMI, I usually ask them to contact their local group for education and to ask about advocacy opportunities, since so many politicians, unless involved directly, have only the very haziest idea of how broken the funding system is.
posted by meehawl at 10:21 PM on April 20, 2016 [3 favorites]


You'd think a civilized society could be united in supporting its children but nope. Survival of the "fittest" all the way.
posted by five fresh fish at 10:55 PM on April 20, 2016


Children are only sacred until they are born, and after that nothing about them matters except how much they consume and how well trained they are to fit into the machine later.
posted by hippybear at 2:14 AM on April 21, 2016 [8 favorites]


You'd think a civilized society could be united in supporting its children but nope. Survival of the "fittest" all the way.

The utter callousness, cruelty, and apathy among people in the US is shocking and disturbing. And now we've got an authoritarian demagogue who has a decent chance of becoming president. We've got some Nazi Germany stuff going on among the poor, uneducated, and disabled, and nobody bats an eye. People on Metafilter have said things like, "Yeah, I can see how Germans acquiesced and supported the Nazis". Like, really?

It's not surprising, I guess, considering how we've been walked down this road step by step in this country, and now here we are and it just keeps getting worse with no end in sight. Still nobody gives a crap. I'm seriously getting out of this country. My great grandfather left his village in Europe a few years before it was wiped off the face of the earth in WWI. Perhaps I share the same trait he does, my Spidey Senses to peace out of here are getting stronger everyday.
posted by gehenna_lion at 4:03 AM on April 21, 2016 [1 favorite]


It's a huge problem that is broken at many stages along the care path - much of it stemming from the very low and restrictive funding system with deliberate blocks emplaced, many of them decades ago to address social issues that are no longer as relevant.

One of the biggest of those, although it doesn't affect children, is the Medicaid Institute for Mental Disease (IMD) exclusion. This is a provision whereby Medicaid won't pay for care for people in psychiatric hospitals or similar institutions if they are between 24 and 64 (or thereabouts). This shifts this very expensive care to the States, which is really a problem.

Of course, Medicaid funding for any of these services is a mixed bag, insofar are Medicaid primarily pays fee-for-service, with many specific exclusions and a very particular model of medical necessity. What ends up happening when Medicaid comes to town is that the reimbursed services get more restrictive. The rhetoric is that the money saved with the Federal match will be used to fund other services, but the reality is that it just disappears into the general budget and Medicaid becomes the only game in town.

We have a severely broken model of funding and paying for social services, and that's when it's working well!
posted by OmieWise at 4:30 AM on April 21, 2016 [2 favorites]


IIRC, I was just reading this post at one of my favorite blogs this morning, and wondering if it was caused by a similar situation.
posted by The Underpants Monster at 10:14 AM on April 21, 2016


The saddest child is the child that is unwanted.
(and I don't mean the adoptive parent)
posted by Gwynarra at 10:38 AM on April 21, 2016


« Older Is a little bit of ionizing radiation good for you...   |   Millennial Reality Newer »


This thread has been archived and is closed to new comments