The Dignity of Risk
January 5, 2015 9:38 AM   Subscribe

In the wake of increased compliance enforcement of the 1999 Olmstead Decision, which ruled that the unnecessary institutionalization of persons with mental illness was a civil rights violation, a man who suffers from schizophrenia and cerebral palsy struggles with the challenges of independent living after years of homelessness and psychiatric facilities.
"This world is not easy,” he said. “You can’t deal with it yourself. You gotta have somebody."
posted by drlith (22 comments total) 15 users marked this as a favorite
Why do social service agencied transition to complete independence with medicine immedately? It is like a road to failure. Getting bubble packs or a pill case and having someone do the meds once a week is a simple task and then have him to do it himself supervised and then let him do it on his own. ARG!

I hate it when social services set people up to fail by not transitioning people to independance.
posted by AlexiaSky at 9:53 AM on January 5, 2015 [4 favorites]

I got nothing except that article made me cry.

I'm trying to help somone who's SSDI is up for review. This person has it together pretty well and I'm trying to help put it's really difficult. I don't know how people who don't function as well as the person I'm trying to help can do it.
posted by marxchivist at 10:28 AM on January 5, 2015 [1 favorite]

Agreed, just reading this stressed me out. This dude needs a pill organizer! But they're trying to have him stay organized from the pack which is hard for EVERYONE. Like, ask any woman who had ever forgotten a birth control pill, or anyone who SWORE they were going to take a multivitamin every morning. Arghhh.

I think in many states, direct care professionals need an extra level of training to handle medications. But like...You are already in the shit with DOJ. Get your people trained.
posted by Snarl Furillo at 10:28 AM on January 5, 2015 [3 favorites]

Oh lordy. The hoops and bureaucratic delays that Kelvin is encountering sound stressful to me! I wonder how someone who has a severe mental illness and is not accustomed to living on his own will cope? The professional helpers sound as if they are doing their best, but it sounds as if Kelvin needs more support, at least for now, than an ever-rotating cast of harried helpers can give.

I would say he needs a pill organizer, an automatic-payment system for his bills, and an apartment suitable for someone who uses a wheelchair. And some kind of mentorship - this is how bills are paid, here are some suggestions for easy-to-prepare, nourishing food, here are some things to do in your new neighborhood, here is the library.

I've said before that people who can't live independently for whatever reason are inevitably shuffled off onto their families, for better or (or/and) worse. What are people like Kelvin, who don't have supportive families, supposed to do?

I think the idea that people with mental illnesses/disabilities are better off living in the community instead of institutions is really good in principle. But in practice, it takes a lot of help, at least at first. I worry that Kelvin is being tossed to the wolves here and set up to fail, not out of malice, but out of lack of support.
posted by Rosie M. Banks at 10:50 AM on January 5, 2015 [6 favorites]

...that found it discriminatory for states to segregate people with serious mental illnesses in psychiatric institutions

Huh? I thought states were using every excuse in the book to NOT keep people in their institutions.

He had been raised by a mother he adored and a father with a drug and alcohol habit.

*banging head against wall*

I hate it when social services set people up to fail by not transitioning people to independance. It's so common in our society. It doesn't have to be.
posted by Melismata at 10:51 AM on January 5, 2015

I don't understand why everything has to be black and white. No, do not throw everyone with PMS into permanent lock-up, great. But why does that mean inpatient or group home psychiatric care isn't appropriate for anyone? Oh right it costs money.
posted by bleep at 11:21 AM on January 5, 2015 [2 favorites]

Actually what happens is that they end up in nursing homes these days. There is not actual care for improvement and they are just stuck. In Illinois it is called the Colbert Concent Decree to move people out.

Some easy implementations I've seen to help transition include 1) including utilities in rent. 2) home health aids for medication 3)rent subsidies 4) setting up automatic withdrawal for rent. It is suppose to be really intensive services and then taper down. Of course linking to normal services such as foodstamps, the free phones, transportation cards and so forth. It is a huge challenge for someone who has literally had 30 dollars of income (nursing homes take the rest) to make financial decisions or even calculate cost. And some people have been in the nursing homes for years and sometimes decades. Financial literacy takes time and experience and these people have none. People in jail face similar transition issues after long sentences.

In the long run it really helps and it is surprisingly successful provided the supports are there and appropriate screening takes place.

Of course allowing people to have activities that can help them learn and grow when in a psychiatric facility or nursing home would really help. And more flexibility with the income rules for nursing homes. I can only dream.
posted by AlexiaSky at 11:39 AM on January 5, 2015 [6 favorites]

Yay Ronald Reagan. (he [and Nancy]) started us down this horrific path.
posted by notreally at 12:15 PM on January 5, 2015

But in practice, it takes a lot of help, at least at first. I worry that Kelvin is being tossed to the wolves here and set up to fail, not out of malice, but out of lack of support.


So I work in social services. Honestly, I see cases like Kelvin's all the time. And they can't be fixed, not because social service organizations are throwing them to the wolves, but because the clients themselves are refusing the help that would actually help them.

For someone like Kelvin to succeed, he would need to go from institution to a transitional living program, and from there to independent living. But transitional living programs are very regimented. Because they are dealing with a lot of very fragile people, they have rules. You can't play music after certain hours. You can't have visitors without signing them in. You can't randomly pop up and bother your neighbors. You have what is called "case management", which means you meet with a social worker regularly who helps you figure out your life, and you have to try to listen. She gets to make some decisions for you - which programs you will try, what you will do, what are reasonable expenditures and what are not in order for you to be cooperating with the program.

And you can check yourself out of them - if you don't like the rules, or if you don't want to be bothered with having too many people in your life. Many clients feel they are treated like children with the management. Because of the "dignity of risk" and "housing first" options, case managers are required to take the client's word when he says he's fine. They can't override and prevent his release. Those markers that social workers asked for in the beginning of the article? They can't prevent him from leaving just because he doesn't meet them, and when some people see freedom, they jump at it and ignore that they are actually having a hard time doing those things.

Some people would be better off in homes, but they don't think they would. That, more than anything else, is responsible for Kelvin's situation.
posted by corb at 12:20 PM on January 5, 2015 [7 favorites]

So I work in social services. Honestly, I see cases like Kelvin's all the time. And they can't be fixed, not because social service organizations are throwing them to the wolves, but because the clients themselves are refusing the help that would actually help them.

What help is Kelvin refusing? The dude is desperate and begging for help throughout this article. He's not telling anyone he is fine or turning down anyone's assistance. There are basic best-practices interventions, like an autodebit for his rent and utilities, or a trained medication aide, that would help him secure his independence.
posted by Snarl Furillo at 12:45 PM on January 5, 2015 [2 favorites]

But transitional living programs are very regimented.
Sorry, but that doesn't sound very "transitional" to me.
posted by oneswellfoop at 12:58 PM on January 5, 2015 [1 favorite]

Allow me to share a brief tale of personal experience. I rented an apartment this fall to a client of MHMR (Mental Health, Mental Retardation). We will call them Tenant. Tenant rented a 1 bedroom apartment, being a single person over fifty with no dependents. While they were looking at the apartment, the MHMR workers who came along with them assured me that Tenant would pay their rent and would TOTALLY get along with my other tenants --that they would be no trouble at all.

Tenant rented the apartment. Within three days, Tenant had caused complaints from every other tenant on the block (we own 7 units in a row, there). Three days.

I was like "Dang, them MHMR people played me for real." Ah, well, fool me once.

Tenant did not pay me one red cent of rent other than the deposit/first month's rent to get into the place (and that was paid for by MHMR). So, fail on that one, too, MHMR.

In the end, Tenant violated terms of their parole and went back into the custody of the state (county lockup, remanded to a bed in a state hospital for nutjobs) but left the windows open and the heat off in my apartment when they were sent up the river. So, the pipes froze. At that juncture, I was still trying to get legal custody of my apartment back (Landlord-tenant takes a while.) and so then the poor downstairs tenant got flooded and I had a sheet and a half of drywall in the ceiling to fix plus also all the repairs for busted pipes.

At the landlord tenant hearing (this is a civil matter, not a criminal one), Tenant informed my JP that I had broken into their apartment and stolen their things because I was a thief and a liar and really totally had it in for them. That's why they changed the locks (in violation of the lease). Tenant also asked the JP to make sure there was a "real" police there for the possession (typically it's a constable, not a police) to prevent me from stealing the rest of their belongings. Tenant assured the JP that I was totally going to do that and that's why I was having the landlord-tenant hearing in the first place. (I thought we were there for nonpayment of rent, myself.) These things Tenant alleged with a straight face, in their orange prison jumpsuit and chains, with their constable in attendance. (Why isn't that slander?)

Needless to say, I won the landlord-tenant case. At the possession, MHMR came with a power of attorney for Tenant and gathered up Tenant's things (so that I could not steal them, as if) though they were at that point covered with white thready mold (due to broken pipes leaking water all over them. I mean, I turned the water off in the basement to prevent further flooding, but until the possession, I do not have the legal right to enter the property and you can bet your boots I am not going to do it once I've been accused of 'breaking in' and 'stealing Tenant's precious things'.) and thus Tenant's belongings had what I would refer to as negative value.

Total damage to me from Tenant's efforts to live independently? About $2500.

Number of times I will ever again rent to anyone receiving any service like MHMR or the county assistance office? 0.
posted by which_chick at 12:58 PM on January 5, 2015 [7 favorites]

That's a really depressing story and everything, but it's an argument for more supports for people with developmental disabilities living in the community, not fewer supports or re-institutionalization.
posted by Snarl Furillo at 1:07 PM on January 5, 2015 [8 favorites]

Yes, what exactly does "transitional" mean, anyway? Give them some independence, during which time they will learn the skills for even more independence. Great. But what if the person is completely cognitively incapable of that learning? Drug use (by either themselves or the parents), major mental illnesses like schizophrenia or plain old MR, that'll do it to you. I've known a few MR folks over the years, and all the financial education on the planet was not going to help their nonexistent impulse-control skills. Why do we keep "hoping" that people will move to the next level, when they just won't? I don't get it. (I am not referring to the people who can learn and should be given a chance, of course.) It's setting people up for total failure, causing major problems for people like which_chick, and helps no one. Why are we incapable of making this distinction?
posted by Melismata at 1:22 PM on January 5, 2015 [5 favorites]

So I work in social services. Honestly, I see cases like Kelvin's all the time. And they can't be fixed, not because social service organizations are throwing them to the wolves, but because the clients themselves are refusing the help that would actually help them.

How does Sweden manage this? To say the problem 'can't be fixed' seems to imply the system is perfect as it is, and there are just a bunch of folks that are destined to misery. This seems unlikely (and defeatist). I understand that you may not have the power to change things institutionally as someone that works in social services, but to blame the mentally ill for the situation seems pretty unreasonable.
posted by el io at 1:32 PM on January 5, 2015 [2 favorites]

This is a wretched tale, yet he is indoors, for the moment.
I take care of an abandoned, elderly, frail, woman. She is better than she was a few months ago, when I went to check on her, and found she had no food, and was living on one delivered sub sandwich every other day. I asked her,"What was going to happen?" She said,"I knew someone would come." Now I am her social service team. I have some time in my life for this, and I am good at it, and I like her. She is not demented just frail. I know there are risks in this, but I set her up with a gerontologist, got her a med pack, and feed her a hot meal five days a week, make sure she has food, and visit, usually daily. If or when I can no longer care give, I will get her into a setting.

There are a lot of elderly people who because of age, can no longer negotiate even a cable contract. She was robbed and abused by her daughters, who are my age. This country is full of abandoned people, and people in the penumbra of dementia and accompanying despondency. They need TV it is much of the life they get. Anyway, she is not even mentally ill, or physically, just frail, and at risk of falling, and does not drive. Planning isn't easy for many.
posted by Oyéah at 1:54 PM on January 5, 2015 [8 favorites]

The idea behind the Olmstead decision and the Olmstead plans are good. The problem is in the details, of course many states are using it as an excuse to cut funding, rather than providing competent in-community care. Olmstead should not mean in effect a continuation of what that evil/ignorant motherfucker Reagan started back in the day, but should be integration with supports. Person centered thinking, person centered planning. Not, "OK bye. see you later good luck". Yes, absolutely people need the ability to take risks, but you don't set that up with no safety net with no helping hands. People will succeed, people will fail but they shouldn't fail to the level of ruining their lives.
posted by edgeways at 2:28 PM on January 5, 2015 [5 favorites]

I have been dealing with someone with severe mental illness for decades now. I wrote a long description but deleted it because y'know what? It doesn't matter. What is boils down to is this:

The authorities say that nothing can be done unless someone is a danger to themselves or others, but the truth is that nothing can be done regardless. Not one thing.

The services for the mentally ill in the USA? You might as well tell a quadriplegic that they can have a wheelchair but they have to go upstairs unassisted to get it. Wheelchairs aren't for sale at any price, unless the patient will climb those stairs on their own.
posted by elizilla at 2:47 PM on January 5, 2015 [5 favorites]

There are a lot of elderly people who because of age, can no longer negotiate even a cable contract.

Wait, you know how to negotiate a cable contract? I can't even understand the damned things, let alone negotiate them.

posted by el io at 3:27 PM on January 5, 2015

I work housing the chronically homeless which generally falls into the mentally ill as well. And out of everybody I house (permanent support, scattered site living) most people do well. Even with substance use. Even with untreated mental illness. But part of that is giving people chances and then suggesting stricter options (like wow you didn't pay rent for the months you now should probably get a payee) and it works. Most of the time. Sometimes all the interventions in the world don't work or mental illness is just to severe to engage. Some people just don't want housing. Sometimes we don't know what will happen and tenants can do some really...unexpected...things like which_chick mentioned.

Agencies can do more to work with landlords. Master leasing (the agencies name on the lease) is one of them. Also working to step participantsv up to their rent portion (see HUD income disregard regulations for an example but doesn't work with all types of income).

Most people want a home and will respect it. We can always point out the exceptions but unless we give everyone a chance we may never find who the exceptions are.

We do have some clue who will and won't succeed, but sometimes people surprise you.
posted by AlexiaSky at 3:30 PM on January 5, 2015 [1 favorite]

Right now? There are no open beds in the entire state of MN for emergency psychiatric care. And we're not exactly Mississippi here.
posted by edgeways at 3:34 PM on January 5, 2015 [1 favorite]

Yes, absolutely people need the ability to take risks, but you don't set that up with no safety net with no helping hands.

Literally no one is doing this on a systematic level, in any state. No one. The current model prioritizes handoffs and referrals.

But what do you expect? Should someone be living with each person, full-time? If so, how is that functionally different than institutionalization except being more expensive?

If you want someone to come in in the morning and in the night, physically, every day, just to get them to swallow five pills a day, that is not just a waste of money but also of social worker's time and energy, which is already in radically short supply. Someone who needs a daily social worker to show up and tell them which medication to take is not someone who needs to be in the general population. That's purely masturbatory at that point - letting them do that just so people can feel good about letting others live independently.

Kelvin's cellphone is out of minutes. Who is going to prevent Kelvin from talking too much on the phone and running up minutes? How would that even work?

(Also, what social worker set a single adult who has trouble paying rent up with a two bedroom apartment? Or was that something the client demanded?)

Kelvin says he needs help with cooking. He doesn't say he needs help learning to cook. He says he needs help with cooking. Should a chef visit Kelvin's house three times a day to cook his meals? Should Kelvin have every single one of his meals deliverered? Or should Kelvin not be out of an institution or transitional housing until he can cook his own food?

When I look at Kelvin's story, he seems happiest talking about and being at the home. Sure, he likes the idea of living on his own, "having a life." But that doesn't just materialize. The client's rosy picture does not translate into the client's reality. And stories like the above landlord one happen all the time. Just because someone's not violent to others doesn't mean they're easy to live next to or around.
posted by corb at 3:46 PM on January 5, 2015 [5 favorites]

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