From the Newsletter.
There’s no question that Britney Spears is a tragic figure. Dancing in a pink leotard, she’s an ATM machine for family in the swamps of Louisiana. She has no control over her $60 million dollar fortune, career, children, or even her own reproductive decisions. Placed under a conservatorship in 2008 by family who say they are saving her from predators and bad decisions, she is perpetually “not a girl, not yet a woman.”
Over time, Spears has spoken out against her conservatorship and has accrued an army of supporters on social media who frequently tweet: #FreeBritney. Adding weight to the faceless twitter mob, The New Yorker’s Ronan Farrow and Jia Tolentino question the motives of her father, Jamie Spears, and the over reach of the legal system that has in effect enslaved an adult woman. They insinuate that Britney’s mental health issues can be chalked up to run-of-the-mill issues, like postpartum depression, and to a very normal reaction to amoral bands of unprincipled paparazzi. (That being said, a family judge would never have taken away Britney’s custody of her children without serious cause.)
Because drunk fans at Las Vegas are willing to drop $100 per ticket to see a middle aged woman lip-sync 20-year old songs, Britney is in a world of her own. She could lose all her money on GameStop stock and bitcoins, and simply regenerate her fortune with more millions the next week.
Most people with severe mental health issues do not have Britney’s self-destruction proof source of income. They hurt their parents and their children. They hurt themselves, ending up in prison, on the streets, or in the morgue. In reality, it’s very hard for family to gain guardianship of vulnerable family members, and efforts to “Free Britney” could undermine efforts to make important health and political reforms. ✓
Beginning in the 1950s, the hospitals and institutions that housed America’s individuals with severe mental health issues, like schizophrenia, began shutting their doors. People were released into the community as the public became aware of inhumane conditions in some of those hospitals. New antipsychotic medications offered the promise for a cure. And not a few politicians liked that taking the expense of those hospitals off the state’s ledger. The hoped that those individuals could be integrated into communities with regular visits at local clinics for their medication.
That plan didn’t work out. When they were removed from a reliable and regular source of medication, individuals unraveled. Because hospitals and institutions closed without adequate community supports, these individuals were stranded.
According to the National Institute of Mental Health (NIMH), 5.2 percent of the population — 13.1 million people — suffers from severe mental illness, “defined as longstanding mental illnesses, typically psychosis, that cause moderate-to-severe disability of prolonged duration.” Without support, these individuals are disproportionately represented amongst the homeless. One in five inmates in jail have severe mental health issues. Drug addiction and mental health issues are considered co-occurring disorders. It leads to early death. With those grim outcomes, there’s no question that deinstitutionalization was a major failure in public policy.
Without any real government or medical support for people with mental health issues, the only guardrail from a homeless shelter in the Bronx or an early death is a caring family member. A parent can gain guardianship over the individual, which enables them some control over medical and financial decisions. A parent, who would really, really like to be drinking a Pina colada at a retirement village in Florida, instead pays his daughter’s bills and drives her to the therapist for anti-psychotic medication. Family, if they even exist, are the permanent, unpaid caretakers of adults with mental health issues.
In reality, it’s really hard to get guardianship of young adult with mental health issues or other challenges. I know, because we went through the legal hoops to gain guardianship of my son with autism last spring. Although he’s smart, his disability means that he’s social naive, susceptible to Tom Selleck-type reverse mortgage deals. He would not know what to do with a summons to report for jury duty. We would like to help him make decisions. At that time, he was also suffering from intense medical issues, and guardianship meant that we could more easily talk to his doctors. If in the future, he doesn’t need our help, we’ll whoop with delight and tear up the document.
It was not easy or cheap to gain guardianship. We had to hire a lawyer for ourselves and pay for a court appointed lawyer for Ian. That barrier is so expensive that I know people who have not been able to gain guardianship of their highly disabled adult-children. We had to provide boxes of documents about his disability. The whole process took almost a year.
So, the state has put the burden of caring for Americans with mental health issues on families, but at the same time, doesn’t really trust parents to do it properly. 99.9% of people with severe mental health issues are not able to get a Vegas residency, so there’s little chance that the parent will benefit financially from a guardianship, but the law cares more about preventing a situation like Jamie Spears than in supporting the average parent.
Why have guardianships? Should people be allowed to screw up their own lives without protections from a parent or a state-run institution? Britney’s supporters argue that she should have the right to make bad decisions just like any other adult. After all, all adults are free to make bad financial decisions, including me who made an ill-advice purchase from an ad on Facebook last week.
Of course, no one would suggest that they take over my financial rights, because I got suckered into buying a dress from a scam company on Facebook. But what if the bad decisions were more serious? Like what if I was endangering the welfare of a baby? What if in the effort to control the voices in my head, I started shooting up heroin in a porta-John outside a Starbucks? What if I stole money from an elderly aunt to pay for a ticket to Miami to dance at a rave club? What if I spent two years following Phish and smoking crack with waist-length dreadlocks covered in lice?
Britney’s situation is unique in so many ways. Britney’s dad, who I’m quite sure is an asshole, should not benefit financially from the arrangement; few people with severe mental health issues are cash-producers for their family. No matter how many bad decisions that Britney made, she wouldn’t be homeless and broke. She may have too many people overseeing her life, but most people with issues like hers do not have a team of professionals keeping them afloat.
Talking about Britney, without the consideration of the situation of the vast majority of people with mental health issues, is silly and unproductive. Making any changes to guardianship rules, because of the publicity behind her case, would be catastrophic. Rather than focusing attention on the unusual situation of one celebrity, we should reexamine our laissez-faire policies on mental health and find ways new ways to support individuals and families.
Pictures: Scenes from last weekend’s trip to Chinatown. They really don’t have anything to do with mental health.
72 thoughts on “#Free Britney From the Good Intensions of Strangers: What the Hashtag Gets Wrong”
That plan didn’t work out. When they were removed from a reliable and regular source of medication, individuals unraveled. Because hospitals and institutions closed without adequate community supports, these individuals were stranded.
Certainly in some cases, but it was a huge help for many people. My first couple of jobs were studying this.
I don’t think we need to make any changes to guardianship rules because of Britney’s case, but I can’t understand why she is deemed worthy of a guardian under the current rules. It’s just nuts. She should have her own lawyer.
Yeah, this isn’t a serious analysis in any way.
She does have her own lawyer. He got paid $500,000 last year. The court chose one for her, but he works for Britney, not her dad.
She does have her own lawyer. He got paid $500,000 last year. The court chose one for her, but he works for Britney, not her dad.
Actually, under the guardianship arrangement she has to pay for both *her* lawyer and the one arguing on behalf of her father to keep the status quo. One of the more risible aspects of the whole situation.
I had to pay for our lawyer and Ian’s lawyer in his guardianship. And I didn’t get to pick his lawyer or have any latitude to pick a lawyer that might be more economical.
I think the biggest problem in her guardianship is that her father is also her business manager and earns money from her. He should be compensated for some basic management of her staff, but minimum wage, not millions. He should not be able to control whether or not she works. That’s just awful.
The gossip blogs have always said that the dad is an asshole and that there are a lot scum around her. They also say that Britney has some very serious issues.
I think she should be able to fire one lawyer and hire a new one. That she can’t–that she has no ability to select her own advocates–reads to me as not being that different from not having her own lawyer. Is there any other category of human being in the U.S. that can’t (within the limits of financial means of course) choose their own lawyer? What about the conflicts of interest that these lawyers have, given how they are paid?
I had to pay for our lawyer and Ian’s lawyer in his guardianship. And I didn’t get to pick his lawyer or have any latitude to pick a lawyer that might be more economical.
Yes, exactly. *You* had to pay for the lawyers. The equivalent situation to the one in the news would be that *Ian* would have to pay for both sets of lawyers while this is being done against his will. Obviously, the number of adult children being taken advantage of by their parents is trivial (maybe confined to Spears and perhaps some others that could be counted on fingers) but I would believe that the financial abuse of elders by guardians is a serious issue.
But this isn’t the real issue here. What the Spears fiasco has highlighted is how difficult it is to get out of a guardianship when it isn’t appropriate. Slate’s “What’s Next” podcast did an episode on this last week, pointing out that in some states (and there is no consistency from state to state) these things can be almost impossible to dissolve *even when all parties are in agreement that the guardianship should end.* The example cited was Ryan King in Washington DC, which appears to be the poster case for this issue. Depending on what the law is in a given state, your statement that you can simply “tear the document up” may not be all that easy and involve years of litigation. And this is when parties agree. It can only be much worse when they are in disagreement.
I would be curious to see the studies that found benefits from deinstitionalization. Most stuff I’m reading described it as a disaster.
That’s because the literature tends to implicitly compare the status quo to not the actual past practice but an imagined past where only people who are now not well served in the community were the ones in the hospitals. There were huge numbers in those hospitals who should have never been confined or didn’t need to be confined for more than a couple of years but were put away for life because that was the system. Those drop out of the analysis if you just look at current conditions without historical reference.
I didn’t read many things that glamorized those hospitals. No one was saying that those sanitariums were Club Med. They’re simply looking at the outcomes of people with severe mental illnesses today — jail, drugs, homeless, dead. Huge numbers. The plan that reformers had for those folks – community clinics, job programs, community outreach, voluntary medication compliance — never happened. Nobody is making the argument that we should go back to turn of the century insane asylums. They are saying that we need to provide some government supports – nice places to stay where people would chose to live, lots of good therapy, work programs, whatever – because the status quo sucks.
That would be great, except the government is being destroyed and the health care system is organized to keep it as confusing as possible for somebody poor to get the medicine they need. I don’t know what making it easier to force an adult into treatment will do when the decent treatment spots are full. If the medication works, does not have huge side effects, and is associated with some kind of treatment or support, people mostly take it more or less voluntarily. That’s the reason I’m leery (not opposed in all cases) of making it easier to force medication.
Spears has a very different problem. Treatment generally works, especially if you can afford the best, especially if what was wrong with you didn’t actually look like bad compared to what can get you locked up if there aren’t $600/hour lawyers pushing for it. Even without treatment, most people with mental illness approaching middle age get markedly better able to care for themselves. If she’s really not much better able to function now than she was in 2008, it’s because she has no guardian looking out for her interests (or, given that she’s been she’s been working most of the time, they have defined her interests as being served by maximizing the amount of money she has in the bank even if she never gets to use it). I’m sure she’s very irresponsible by normal standards. She’s pretty obviously nuts. But the degree of control in her conservatorship is what you see in people who aren’t allowed around sharp objects, not people likely to marry poorly or spend badly. Nic Cage is a disaster as a person, but as a matter of public policy, it hasn’t been an issue.
I think she’s more nuts than Nic Cage. I also suspect that her stage parents never sent her to school and that she has just plain old cognitive deficiencies. Her kids were taken away by a family judge, who is totally separate from the guardianship legal system. They don’t do that lightly.
I do feel queezy about “forcing” anyone into treatment. I would like treatment to be so attractive that people want to get it.
I also want the state to take a larger responsibility for the care of the mentally ill. For me, the key part about deinstitionalization wasn’t giving the mentally ill freedom. The biggest issue for me was the transfer of responsibility from the state to the family or, often, no one at all.
I think the argument is that there are many individuals who did not benefit from those institutions and would not benefit from them who are now not institutionalized and have benefited from the changes that made it difficult to put them there. I always think of Ellen Forney, a Seattle artist. She’s too young to be part of the bad old days when women were institutionalized because husbands wanted to get them out of the way, because they were poor, or too sexual. She’s written a book talking about her struggles through bipolar disease, and, most importantly the chaos in her life while she was a medication experiment: Marbles. I felt it gave me good insight into being i her head.
Ellen has gotten her illness in control, mostly, but during her “up” phases her life was spiraling out of control.
Laura wrote, “That being said, a family judge would never have taken away Britney’s custody of her children without serious cause.”
She did some crazy stuff with her kids when they were little–I remember she used to drive with a baby on her lap. But that was 10+ years ago–her kids are 14 and 15 now.
“One in five inmates in jail have severe mental health issues.”
Since deinstitutionalization, we’ve often managed serious mental illness with jail. People who were violent and disturbed wound up in jail and off the street. This past year, due to COVID and George Floyd and cash bail “reforms,” there’s been a revolving door for violent, disturbed people, especially in major cities. I could show you news story after news story of people committing assault, getting arrested, getting let free, committing assault, getting arrested, being set free, until maybe the day finally comes when they stab or kill somebody.
I’m hoping that with a better COVID situation and people starting to see the light on street crime, that there will be some progress on dealing with the violent mentally ill, because it is causing enormous human misery, both to themselves and to others.
Not unrelated: A large percentage prison inmates turn out to have ADHD, often undiagnosed and untreated.
Laura wrote, “So, the state has put the burden of caring for Americans with mental health issues on families, but at the same time, doesn’t really trust parents to do it properly.”
That is a very interesting point.
“Certainly in some cases, but it was a huge help for many people. My first couple of jobs were studying this.”
Yes, anyone who worked adjacent to institutionalized mental care has seen the positive changes (though they do not come without costs to those who get lost or escape the system).
“That being said, a family judge would never have taken away Britney’s custody of her children without serious cause.”
This presumption that the courts are doing their job is what seems suspect to me in Britney’s case, not necessarily the law. In reading about conservatorship, the most egregious cases seem to involve elder care where there are assets at risk and conservators have been appointed when families couldn’t agree to take care of their elders. And the elders had no will, durable powers of attorney/medical care were procured before the elder became incapacitated. The courts that are supposed to monitor have very little support and judges find it easier to just go along (in some cases with little regard for the law).
Parents obtaining conservatorship & guardianship of their children (the reading suggests people are trying to separate those words for what we’re hearing in the Britney case as control over “her assets” and “her person”) don’t usually have significant assets to manage (unlike in Britney’s case). The advocates I’m seeing want more oversight of the money — and I can see this argument, especially when non-negligible money is involved.
I do think that parents are usually the best judge of what is best for their children and that we should be careful when we intervene. Even when I might disagree with what a parent is doing in an individual circumstance, it seems empirically clear that state intervention rarely provides better outcomes.
To cite an example where the ideological lines sometimes fall differently, when should children be taken away from their parent (or parents), especially when that removal throws them into foster care (which was not the case for Britney’s children)? Washington State is revising its rules: https://crosscut.com/opinion/2021/05/why-im-holding-my-applause-washingtons-new-foster-care-law
The article cites the terrible statistics of foster care — children graduate at lower rates than those children classified as homeless, the change, which narrows the circumstances in which children can be taken away from their parents into foster care, but then admits the challenge, the lack of supports for drug treatment and housing which often create the conditions that result in children being removed. The author talks about the pendulum swings, and I think we experience those in conservatorship law, as well, sometimes from public events like Britney’s case (and Mickey Rooney).
…sometimes from public events like Britney’s case (and Mickey Rooney).
I didn’t even know they dated.
Interesting and sad re:foster care
“She did some crazy stuff with her kids when they were little–I remember she used to drive with a baby on her lap.”
There’s no evidence that this was a consistent practice.
Drug use, post partum depression, and potentially bipolar disease might be at play, but I can’t imagine that driving once with your child in your lap should be grounds for taking your child away.
I paid no attention whatsoever to Britney Spears before this past week, so I’m not up on what she did back then. I just tried to google it and couldn’t find out much. Clearly she hung out with celebrities who did drugs, and may have been an addict. She’s been drug tested for a decade now. I don’t think recovered drug addicts should be in guardianships, even if they might start using again. I see no allegations that she has ever had a psychotic break. Postpartum depression, yes, but as far as I can tell not even postpartum psychosis. Has anyone alleged bipolar I, which has elements of psychosis? Bipolar 2 is quite different, and in case, people with bipolar have periods of normalcy in which they can certainly make decisions on their own behalf, including decisions for future treatment via advanced directives. Guardianships should not take away that right.
I understand the arguments for guardianship with consent and recourse. I don’t see any arguments for it being done against without consent or recourse. For those incapable of consent because they cannot understand the concept of consent, or in a florid psychosis, yes, though prior consent through an advanced directive–if possible–is ethically preferable. In any case I can’t see how it is every acceptable to do it in a way where the decisionmakers have financial conflicts of interest and benefit from the arrangement.
But the thing which bothers me the most is the lack of bodily, reproductive freedom. Nobody should be allowed to require anyone have an IUD. Nobody should be allowed to prevent someone from seeking to get pregnant should they wish. There are long histories on this, and I thought we’d turned the corner. The current standard of bodily autonomy in medical ethics is almost absolute. If the law is behind on this, so much the worse for the law. The fact that the father who is a sexist jerk who called her fat–and was absuive to her mother, who had to get a restraining order against him–has any role in deciding whether her IUD is removed–it’s unbelievably repulsive.
Often lately, I find myself not of the same opinion as the young z-ers. On this one, I wholeheartedly agree.
Making it hard to gain guardianship of disabled young adults is not the same as not trusting parents. Gaining guardianship should always be hard as it does deprive people of their basic rights.
I have heard horror stories about the damage done by people done with bipolar disorder, ODD, schizophrenia, etc… one story that I might delete in 30 minutes… A young woman with loving parents who spent tens of thousands on various schools and therapists. They eventually a buy a house for her because she assaults the mom. Then the 20 year old gets pregnant snd has a baby. Marries the guy who also has issues. She steals family heirlooms and sells them at a pawn shop. When the baby is born, she leaves him alone for hours snd hours and badly neglects him. At 2, the kid is so messed up, she leaves him with her 70 year old parents to care for, but doesn’t give them custody, so they can’t get the kid qualified for an IEP. At 6, that kid is permanently screwed up from his early years of neglect. Already been hospitalized for violence.
I have no idea what the right answer is, but the status quo sucks. And it’s not cool to minimize the damage that these people do to everyone around them.
(Using iPhone. Excuse typos.)
Jay said: What the Spears fiasco has highlighted is how difficult it is to get out of a guardianship when it isn’t appropriate.
Alright, let me restate some points. It is really, really hard to get a guardianship, because of the concern for Britney Spear and Elder Abuse. I have volumes of files stating that my son has autism with a dozen medical professionals and the process still took months and was far from a guarantee. I thought we had a 50/50 chance of getting guardianship. The burden on of proof falls on the parents (or in the case of older people with dementia, the children) to show that the person is really incapable of making informed choices on their own.
Because it is so difficult to gain guardianship, there are many, many, many people with severe developmental and cognitive issues without guardianship. Their parents have to jump through ridiculous hoops to be allowed to talk to their children’s doctor or to help them apply for state benefits like Social Security. I talked with a woman whose brother is in his 30’s with severe developmental delays, like he’s barely verbal and has an IQ of about 40, and his parents still do not have guardianship, because they can’t afford a lawyer. I would be really mad if this Britney Spears case makes the process even more difficult.
I would be really mad if this Britney Spears case makes the process even more difficult.
I would be too, but I’d blame her guardians and the judges that allowed the situation to continue, not Spears and supporters. I was more than a little shaken to see that a forty-year old who is obviously functioning very well in many spheres of her life could be still under the same degree of control that she was a dozen years ago and apparently nobody is in a position to ask why with sufficient force as to get an answer..
Apparently she’s getting a new attorney, so she always had the power to do that…. https://www.dailymail.co.uk/tvshowbiz/article-9775819/Britney-Spears-wants-hire-lawyer-Mathew-Rosengart-represent-ending-conservatorship.html
He former attorney said that Britney never said that she wanted to end the conservative ship. (not sure he’s trustworthy.) https://www.dailymail.co.uk/news/article-9761597/Britney-Spears-court-appointed-attorney-resigns.html
No doubt the Spears case is a mess. Where’s her mother and siblings? I also assume that she’s a lot less functional than was portrayed in the Farrow article.
But like I said, Spears is a huge outlier. The real victims are the millions of families who are caring for their adult-children with mental health problems without any support from the state or the community. The victims are the children of the adults with mental health problems. The victims of parents of adult-children with severe developmental and intellectual disorders who cannot afford the legal fees to gain guardianship of their children.
I’ll think I’ll keep using this comment section to tell everyone horror stories.
I used to get newsletters with lots of stories like that. I think the ones with the more formal publishing process were from the New York branch of BAMI. This was just at the end of the paper office, so my boss would have the secretary staple a slip of paper on it with our names and we’d pass it from one to the other checking off after we read it.
My understanding is that Spears didn’t know she could petition to end the conservatorship
Horror stories happen here in NZ as well.
Not only do we have the same privacy laws – elevating individual privacy over all other considerations, we also have a mental health crisis (as in months-long waiting lists for even diagnosis, let alone treatment, for people in the midst of serious suicidal and/or self-harming behaviours), and a housing crisis (people with mental health conditions are one of the least likely groups to get tenancy in private accommodation – and public housing waiting lists are, again, years long).
So people with serious mental health issues, can’t get treatment, have no residential care, and are almost certainly going to have nowhere to live – but families aren’t *entitled* to have any information about any of this.
Recent example – this guy, with demonstrably serious mental health issues – basically dumped back on the street in the middle of the night.
2 cases from personal knowledge:
Friend with sister with (what looks like from the outside) bipolar issues. Fine as long as she takes her medicine – but she doesn’t like them (or the side effects); and when she goes off the meds, ends up in psychiatric care (serious violence and self-harm behaviour). Her sister (my friend) is the only family member who has any contact with her (she’s burnt the bridges with the rest of them). Hospital *will not* even call my friend when they discharge her sister – to let her know that she’s back on the streets (because she doesn’t even have an address to be discharged to). Sister states very strongly that she doesn’t need any assistance, and no one from the family should be given any information. But then turns up on my friend’s doorstep seriously unwell, or she gets a call from the police to come and collect her, etc. This is a cycle which plays out, repeatedly, over multiple years. From the outside, it’s really easy to see that this woman is not ‘fit’ to make independent decisions about her life and medical care.
Friend of my Mum’s with a grown son (40s) who has significant mental disability (low IQ, etc.). He has limited independence (parent’s have bought him an apartment, and made a settlement in their wills, but never set up any guardianship over him. He gets a small benefit from the govt, but has been in trouble with the law (getting aggressive in public), and is very vulnerable to people taking advantage of him. However, parents are now in their late 80s, and Dad has Alzheimer’s, while Mum is very frail. Now in a retirement home, and the money is trickling away on their care and needs – while, of course, neither can go with him to medical or legal appointments, any longer.
Their daughter, only family member left who can make decisions, is completely shut away from *any* information about her brother. She has power of attorney for her parents – but, because they never set anything up for her brother, this doesn’t translate into any legal guardianship for him. She’s not personally keen about taking over the responsibility – but says ‘who else, is there?’ She is incredibly frustrated over the whole situation.
And one, which has just happened. Showing that even ‘ordinary’ people can be bitten by this situation. Friend of mine has a 19-year-old son. Recently, he was walking back to university with a group of friends, when some random idiots assaulted them. He ended up with a kick to the head, which resulted in some concussion – not immediately apparent, but developing over the next few hours. University Halls of Residence didn’t call her. It was only a friend of his, seeing that he wasn’t tracking, who got him to the emergency doctor and called her (using her son’s phone – without his knowledge). Her son just wasn’t tracking enough to be responsible for his health – typical teenage bloke “I’m OK, don’t make a fuss”. But Halls of Residence and hospital only had responsibility to him (not responsibility to even notify his parents). They regarded it as up to him to inform anyone he wanted to (even though with a concussion he wasn’t mentally competent to do do so).
Luckily, all well that ends well – and he’s come out fine, after a rocky couple of weeks. But a real shock to her just how powerless you are as a parent, once your child is over 18.
According to what I’ve read the waiting lists for mental health treatment in the UK are also terrible, on top of which patients are given only a cycle of treatment before they have to reapply, and then they have to wait again and receive care from completely new providers. Horrifying. This is one reason my good health insurance (because I am in a union!) will have to be pried away from my cold, dead hands, one reason that MFA will never be acceptable to most suburbanites. Our health-care system needs to be overhauled, and of course there should be universal health care, but a hybrid system like in most European nations and not Medicare for All. Who in their right mind would want people like Trump and McConnell to have any direct authority over their health care? Who would want to grant the Republicans the right to do to it what they’ve done to the post office? On this the z-ers are just plain wrong.
Just a quick note on the issue of violence and mental health. I think it’s important to separate illnesses (like ODD, or antisocial personality disorder) that are highly associated with violence, and we are defining as mentally illnesses because we have decided to reform our understanding of criminal behavior (as we no longer consider those who engage in antisocial behaviors to be just bad, with of course is an improvement, one I agree with), from the vast majority of mental illnesses as they are traditionally understood, which are not especially associated with harm to others. Most mentally ill people do not hurt others, and are far more likely to hurt themselves. Even if someone with a mental health condition hurts someone, it doesn’t mean it is because of their mental illness. These stereotypical understandings of the mentally ill are dangerous and lead to ill treatment of the mentally ill.
I think you’re confusing Medicare with Medicaid. Gen Z knows what they are about.
Even with good health insurance the wait is often long. When I helped a loved one to get inpatient/residential treatment we were told by the psychiatrist to consider having them admitted via a 5150 (the code in California for a 72 hour hold used for people who are an immediate danger to themselves and others.). No one had room otherwise. We didn’t want to do that because it would mean their being stuck in a locked ward for 3days with all the intrusive monitoring that entails, which was a huge increase in stress to someone who was already near breaking.
In network therapists had long wait lists and were often in training and working under a licensed supervisor. (No one experienced wanted what insurance paid). We ended up with a therapist paying out of pocket, as do most people I know who need therapy and need someone good. During the months following residential treatment we spent on average $3000/month on therapy, drug co pays, and office visit copays. Loss of salary was another cost – adding that in we were out about $75,000 that year. Thank goodness I had just inherited some assets from my mother whose passing added to our stress.
The residential facility had some amazing staff even though it didn’t look like a place you wanted to be. The help they gave was phenomenal. It was located in an old beat up mansion. Most people there were homeless and spent their free time with social workers trying to set up their next living situation for when their 2week stay was up. One guy broke the rules and used drugs during his stay and was thrown out with a blanket in the middle of the night. When we asked the staff why he wasn’t referred elsewhere they said it would take days to find a place and in the meantime he’d most likely be a danger to other residents’ sobriety. I’ve often wondered what happened to him – many people with mental illness have addiction issues too and it’s challenging to treat in our fragmented system.
Ann said, “But Halls of Residence and hospital only had responsibility to him (not responsibility to even notify his parents). They regarded it as up to him to inform anyone he wanted to (even though with a concussion he wasn’t mentally competent to do do so).”
This is a little bit of a detour, but I want to mention that COVID enters into this stuff, too.
My grandma (age 96, poor vision, poor hearing, very frail and dependent these days) wound up in the hospital in Western WA recently with an infection. I think she’s doing OK now, but there was a bad bit at the beginning where the intake people really didn’t seem to be paying attention to anything my auntie said about grandma’s medical needs AND auntie was not going to be allowed into the hospital to support grandma. Auntie (who has a lot of friends in the community) raised hell on social media and she eventually was granted 4 hours a day visiting privileges.
Sis mentions that a friend’s dad with dementia wound up in the hospital during COVID (probably also in WA). The family eventually discovered that the dad had been without food for 2 days in the hospital, as nobody noticed that he wasn’t eating the food they were bringing in on trays. The dad was unable to feed himself and nobody at the hospital figured that out, which they would have a lot faster if he’d been allowed a visiting relative.
Our oldest was in the hospital in Texas with kidney problems in in late Dec. 2020 and mid-Jan. 2021. Despite the fact that COVID was absolutely raging in our area at the time (about 80 cases per 100k per day at peak), the hospital rule was that she could have one visitor per 24 hour period. Given that our oldest is 18, has little experience managing her own healthcare, and was out of it at least part of the time, this was very helpful.
I suspect that down the road, we’re going to discover that a number of “excess deaths” during the pandemic were caused by the combination of bad hospital care, bad nursing home care and lack of visiting.
Unfortunately, the assumption is that people can take care of themselves and advocate for themselves–which often does not make sense in the hospitalization situation. If the patient were well and 100% able to advocate for themselves and take in all healthcare info as it is shared with them–they probably would not be at the hospital!
I forgot to mention–both grandma and auntie were vaccinated and this all went down a few weeks ago when WA had very low COVID, so there was NO excuse for not allowing a vaccinated visitor to a vaccinated patient.
In the US, a working solution to the 18 year old in medical crisis is to have a health care proxy and a hipa waiver (as well as durable power of attorney fir more extreme cases). those documents can be agreed upon with your child, but you have to plan in advance.
Thanks. Still reading all the comments. Super interesting
Britney will presumably have new lawyer because her current lawyer resigned because of the publicity. Not because she was permitted to fire her lawyer.
The Spears case is terrible. It is (in my opinion) an abuse of the concept of a guardianship. Step back a moment. If a prudent person had become the guardian of an entertainer in her 20s, wouldn’t we expect that guardian to arrange for her to obtain a high school diploma? After all, there’s no guarantee a career would continue forever.
We would also expect a prudent guardian to stop the entertainer from touring, as concert tours are extremely stressful. Performers who are not under guardianships regularly have breakdowns during tours.
I would not, at all, assume that the family court judge removing custody means anything about her mental health today. I would also not assume that not finishing high school means anything about her intelligence, given that her career started in elementary school.
Guardianships should be restricted to care for people who don’t know what a lawyer is. Not used to prevent a performer able to govern her own affairs from marrying without a prenup, having children, and disobeying her father.
Cranberry said, ” If a prudent person had become the guardian of an entertainer in her 20s, wouldn’t we expect that guardian to arrange for her to obtain a high school diploma?”
It’s kind of irrelevant at this point at Britney’s earning level, but yeah.
“We would also expect a prudent guardian to stop the entertainer from touring, as concert tours are extremely stressful.”
That’s true, too!
This article from the Wall Street Journal stems from 2015: https://www.wsj.com/articles/abuse-plagues-system-of-legal-guardians-for-adults-1446225524
I recommend it. One of the first paragraphs: The visit marked the start of a 30-month stretch in Washington’s guardianship system that upended her life and drained much of her $700,000 in assets. People involved in her case still disagree about whether Ms. McDowell ever needed a guardian. But by the time a judge decided that one wasn’t necessary, the value of her assets had dropped by about $470,000, much of which was spent on several guardians and related expenses, court and bank records show.
Lawyers and appointed experts are entitled to bill for their services. And they do.
The system is abused. Courts do not have the resources to enforce the laws that already govern guardianships.
Cranberry quoted, “But by the time a judge decided that one wasn’t necessary, the value of her assets had dropped by about $470,000, much of which was spent on several guardians and related expenses, court and bank records show.”
It varies by state. There are many trusts set up for disabled individuals that pay their trustees well, but don’t spend much on the beneficiaries: https://www.villagevoice.com/2013/07/10/the-ruling-that-could-change-everything-for-disabled-people-with-million-dollar-trusts/
The trust was now worth $3.6 million. In the five years after Marie’s death, Platt earned more than $26,000 in commissions, and JP Morgan received more than $52,000. But through March 2010, they had only spent $3,525 on Mark after Glen intervened.
This issue could affect any of us, as we age. It is not an issue restricted to people with debilitating mental health issues.
To completely protect yourself, plan for your future before there is any need for a guardian. Work with an estate planning attorney to create a health care directive and health care power of attorney or proxy. These documents allow you to make preemptive decisions about your health care and name someone you trust to make decisions for you should become unable to make them yourself.
Set up powers of attorney, naming people you trust to manage your financial and legal affairs on your behalf beginning today or at a point in the future when you are unable to do so. You may also consider a living trust, which can provide complete management of all of your assets according to your instructions.
If you move to another state when you retire, look into the laws in that state. It varies by state. There was a New Yorker article about this, “How the Elderly Lose Their Rights.”
Planning ahead does help. At least it made my mom’s guardianship relatively easy.
I am in the midst of this process Cranberry. Nevada is particularly bad.
I think that the process for parents getting guardianship is difficult by design because it is a process that is ripe for abuse. Laura says it isn’t abused, but I am not sure I believe that. I think that relaxing the process will lead to more abuse. Disabled and mentally ill people do still have rights. I am glad the government is protecting those rights even when it makes things harder for some parents. People should be able to make bad decisions.
We’ve updated our personal choices for care decisions each time we change our wills. I was relieved when our children were no longer minors, and thus we don’t have to choose guardians for them. At that point though, the tables are turned, because by the time your children are adults, you might need them to make care decisions for you! The advice from our lawyers has always been to declare the potential guardians in wills and living wills, rather than let the courts decide.
I don’t believe people have the right to have a lawyer. I mean, they should, but I don’t think it’s in the constitution, unless they’ve been accused of a crime. It makes sense to stop unethical lawyers from tying up the courts contesting guardianships on the behalf of incompetent people. However, Britney Spears is not incompetent. I believe a temporary guardianship might have made sense at the time it was put in place, but only for a very limited time. To put it in perspective, I think in this state, an involuntary committment to a mental hospital can only last for 3 days.
I suspect getting guardianship is difficult by design because the system isn’t large enough to cope with its present requirements. My casual internet searches are turning up lots of complaints about guardianships that aren’t reviewed on a regular basis, although that’s required by law. If it’s true that state laws have been changed to include more people, it’s a recipe for disaster.
The argument that we should trust parents with guardianship because they know best, and thus make it easier leaves me cold. Parents abuse children all the time. That why we have child protection social workers. This can be abused, and given what we know about elder abuse, I don’t believe this isn’t abused.
“The argument that we should trust parents with guardianship because they know best, and thus make it easier leaves me cold. Parents abuse children all the time. That why we have child protection social workers. This can be abused, and given what we know about elder abuse, I don’t believe this isn’t abused.”
Given the realities that parents face daily in parenting severely disabled children. The fact that they are given little support, and face severe financial penalties (e.g. one parent is almost certainly unable to work outside the home). Those who are not totally committed to the best welfare of their kids will have given up long ago, and resigned them to state care.
They have no incentives to financially abuse their kids (unlike elders they have minimal assets). And are more likely to *be* abused by their kids (unintentionally) than be abusers.
The shocking history of actual abuse in state facilities – physical and emotional – gives most of us no conviction that the State will be a better guardian than the families.
And this situation – recently covered in the papers.
Teen in state care (serious mental health and behavioural issues). [Oranga Tamariki is our Department for the Care of Vulnerable Children]
Mum, who is clearly still in contact with the teen – was *deeply* worried over her plans to travel to Australia (in the midst of Covid) to live with this guy she’d ‘met’ over the internet.
State care staff – were completely unworried by this situation – to the point of helping her pack (because she’s 16 and able to make her own choices)
Detective work by the Mum uncovered that the man had convictions for sexual abuse of minors. And has now been arrested by the Australian Police for online grooming.
Mum – *despite the opposition of the State agency*, was able to get a court order forbidding the girl to leave the country.
So, just who is looking out for the welfare of this highly-vulnerable teenager? It’s certainly not the State Agency.
Is this a foster care situation? One where a child has been taken out of parental custody?
All of these stories are entirely devastating because they show what little is successfully done to protect vulnerable people who can’t protect themselves.
Sort of a complicated foster care situation. Child removed from birth family at an early age. Was in long-term foster care. Foster parents surrendered her guardianship back to the State (this usually means that she was out of control with behavioural issues and either the parents or other children were at risk). But foster mother still had a close relationship (or as close as the girl allowed) with her.
There is a Uniform Law being shopped by the Uniform Law Center on revisions of guardianship. I do expect it to get more attention because of the high profile of the Brittney Spears case.
At this point, only WA and ME have passed it. My reading suggests that other states have been slow to pass it because it has oversight requirements that would cost money to implement.
The ABA press release highlights some key points: https://www.americanbar.org/groups/law_aging/publications/bifocal/vol–39/issue-1–october-2017-/new-uniform-act-boosts-guardianship-reform/
The law revisions Examples
(1) Requires individuals be given meaningful, plain-language notice of their rights, and be involved in decisions affecting them. It requires guardians to create and courts to monitor person-centered plans.
(2) Provides guidance to guardians and conservators in carrying out their duties.
(3) Provides a model petition form to give judges additional information, and a model order — making it easier for petitioners to seek and courts to fashion a limited order.
(4) The Act creates an option for courts to enter specific orders (“other protective arrangements”)
The ULC initiative predates the Britney Spears case (developed in 2017) and one motivator seems abuse of the elderly perpetrated by non-family guardians.
The article pulls out the following stats for Florida (just Florida):
191 cases of abuse of 1505 allegations
11 guardians permanently barred.
A key factor in elder guardianship abuse seems to be professional guardians/guardian attorneys/caregivers given broad reaching powers over finances and personal decisions. A key complaint is family members who are prevented from seeing their family by the professional guardians.
This is a pretty terrible story, from the New Yorker:
“Rudy chatted with the nurse in the kitchen for twenty minutes, joking about marriage and laundry, until there was a knock at the door. A stocky woman with shiny black hair introduced herself as April Parks, the owner of the company A Private Professional Guardian. She was accompanied by three colleagues, who didn’t give their names. Parks told the Norths that she had an order from the Clark County Family Court to “remove” them from their home. She would be taking them to an assisted-living facility. “Go and gather your things,” she said.
Rennie began crying. “This is my home,” she said”
Their only daughter comes to visit them later in the afternoon and finds them gone.
“That weekend, she called her parents several times. She also called two hospitals to see if they had been in an accident. She called their landlord, too, and he agreed to visit the house. He reported that there were no signs of them. She told her husband, “I think someone kidnapped my parents.””
That guardian has been sentenced to prison: https://www.ktnv.com/news/investigations/disgraced-former-nevada-guardian-sentenced-to-serve-up-to-40-years
Nevada has also changed its laws. I am not sure that that would have happened, were it not for the coverage of abuses by local news and the New Yorker magazine.
Good to hear that follow up.
Meh. Whatever. As long as it doesn’t make the job of parents more difficult.
A couple of years ago, I wrote an article about how parents with autistic kids were getting help from each other on the Internet, because nobody else — not schools, insurance, community — was helping them. I had insomnia last night and was flipping through the Facebook pages of those groups. There are parents dealing with situations that you cannot even imagine. Like kids who are so sensory seeking that they cover themselves with their own poop, if the parent walks out of the room. One mom said she was so exhausted that she fell asleep in the middle of the afternoon for an hour. When she woke up, her apartment was trashed by her autistic six-year old. She showed pictures.
Those parents were very careful to not complain about their children. The situation, not the kids, were the problem. They said that they were exhausted or that they have no help, but they always said that they loved their kids. A number of them turn to God to cope.
There is NO SUPPORT for these families. Such a massive tragedy.
And this issue isn’t just relegated to autism. My cousin is caring for her mom whose dementia excelerated during COVID. Last month, my cousin had to move her mom into her house and put her daughter on the sofa, because things were getting bad. Last night, the cops returned her mother to her house. She had walked out of the house at 4am in her nightgown and bare feet. When the cops got her, she could only remember her own name, not her kids or where they lived. When asked why she was outside, she said that she had been kidnapped and jumped out of a car.
But my cousin has some resources. My aunt will have to go into a memory care home, which will be paid for with insurance and savings. Those homes are okay, if you choose well.
Parents with children (adult-children or young children) with severe mental health issues or developmental issues have far less support. Schools can’t even educate typical students right now. Things are really bad out there right now. If you and your family are in a good situation, count your blessings and vote for people who will take care of others.
Parent guardians of the disabled should probably be watching the law since as any law it tries to balance the interest of different groups with a prioritization of the groups whose rights are being taken away. And, I do think that 18 year olds with no assets who are dependents living with their families are fundamentally in a different situation than 80 year olds who have lived independently all of their lives and amassed assets. Parents have an important role to play in making sure lawmakers know about the effect of the law on their families.
This news article yesterday.
Parents told they are no longer *allowed* to fund a teacher aide to help their kid in class.
Background to the story. In NZ, you will only qualify for educational support for your child if they are *very* severely disabled (i;’s also a bureaucratic nightmare to actually qualify). The ORS funding his highly restricted to the point where kids on the autism or ADD spectrum will pretty much only qualify when they are functionally unable to be in school in any case. The funding was set in place for physical disability (kids who have motor conditions, etc) – and it really ignores any of the neuro spectrum of diabilities.
Parents have been paying for teacher aides to be in class with their kids – to support their learning – because otherwise there is zero assistance.
[Yes, that means that only the kids with parents who can afford this, can have the support.]
Now the government has told them they’re not even allowed to do this!
The New Yorker article: https://www.newyorker.com/magazine/2017/10/09/how-the-elderly-lose-their-rights
And, another example: https://www.nextavenue.org/guardianship-u-s-protection-exploitation/
“Ginger Franklin was just shy of her 50th birthday when she fell down the stairs of her Nashville-area townhouse in 2008. A marketing representative for Sam’s Club, she was taken to the hospital with a severe brain injury. Doctors weren’t sure if she would survive.
Since Franklin had not designated anyone to make decisions for her if she became incapacitated, and with no immediate family, her aunt was advised to petition the court for a guardian. The guardian, a lawyer appointed by the county, placed her in a group home for seriously mentally ill adults.
But Franklin was not mentally ill. And she did what no one expected her to do: she recovered.
When she returned home from a rehabilitation center seven weeks later, however, the guardian “told me that I didn’t have a home anymore and that my townhouse was empty,” Franklin said.”
“There are parents dealing with situations that you cannot even imagine. ”
Oh, I know, as well as an outsider can, since I know non-parent babysitters/caregivers/attorneys for those with significant special needs well enough to hear the stories in some degree of detail.
I also know family members of people who spiraled out of care and lived on the street because of schizophrenia and ones who are institutionalized and those with significant mental illness who controlled their illness well enough to live independent lives (some successful).
But, a personal parenting challenge of my own is how to be sure that I do not try to control the lives of my typical children (most recently, the trivial desire on my part to “help” with my 17 yo kiddo’s photo essay project or to limit the time my 20yo spends on the NYT letterbox). So, I know I am not personally dealing with the need to help my adult child avoid significant, life changing consequences because of decisions they might make.
My point is that it would be really nice if a fraction of the energy and interest in the Spears case was actually used to help families with overwhelming oversight responsibilities. Also, keep in mind, bj, that you probably know rich people who are dealing with those situations. Imagine not having the money to hire a lawyer, an education to reach out for help on social media, the zip code to a good public schools, and extended family to provide some relief. For every Britney, there’s a 100,000 people that get zero help or attention.
Yes, some of the people I know are rich, but, I am also familiar with the major disability rights organizations and the roles they play in obtaining services. So, a lot of the stories I know about are not about the rich.
The attention paid to the Spears case brings to light the abuses of the system and that’s how anything changes. I do care about Britney, because she is a person, and now I know about her and I hope the legal system has the capacity to make the right decisions for her, but she doesn’t need me protesting for her; I use the case, as I try to do on these issues, to understand experiences beyond my own (and that includes reading about cases beyond Britney’s).
The ULC law is, as I mentioned, supposed to mean spending money on the oversight.
I feel like we are not understanding each other. Not sure why.
Me & you? or more generally those of us who think guardianship abuse is a real problem or who think the Spears case is relevant to the discussion?
Lots of people without mental health issues hurt their parents and their children. They hurt themselves, ending up in prison, on the streets, or in the morgue. And plenty of people with mental health issues do not hurt their parents and their children nor do they end up in prison, on the streets, or in the morgue.
Well, not prematurely at least.
MJ said “Lots of people without mental health issues hurt their parents and their children.”
However these people are held by society to be responsible for their actions – and there is little social pressure for them to be re-integrated into the family which they have abused.
There is *huge* pressure on families of people with mental health issues, who *have* gone off the rails and hurt or badly frightened their family, to continue to look after them. Both because they are not responsible for their actions; and because the social alternatives for their care are so appalling.
I’ve witnessed a friend give up guardianship of her daughter – who was spiralling out of control, and both at serious risk to herself (suicidal behaviour) and to her family (psychotic episodes with knives threatening them). Not only does she have to deal with her own guilt as a ‘failed mother’ (not that she is – but we all have our demons), she has to deal with the huge worry over how her daughter will fare in a public system which has daily news articles about high-profile failures, and with the condemnation of ‘outsiders’ who have zero idea of the realities of the situation, and who think she’s selfishly ‘giving up’ on her daughter.
Many people do not have close family to care for them as they age. Their numbers are growing. https://health.usnews.com/health-news/health-wellness/articles/2015/10/26/no-spouse-no-kids-no-caregiver-how-to-prepare-to-age-alone
I agree that it is not fair that the system leaves families to struggle with the problems which arise with mental illness or disability. I am not convinced, however, that mental hospitals were necessarily a better option. Any system might work, if there is capable, ethical supervision. I am not sure, though, how many people feel called to work in care homes or mental hospitals.
I don’t necessarily think that mental hospitals are the answer. Although secure care facilities *are* needed for some people (both short term, and longer term). They don’t have to be the awful institutions that are scarred on our memories. There has been some great coverage here of the Dutch Alzheimer’s care facilities – which are more like villages than mental wards. Group homes for adults with mental disabilities have been successful in many places (and I’d like to see more of them – rather than them gradually disappearing). The key to both seems to be active on-site (even if unobtrusive) supervision.
But I do think that care and protection (especially protection) needs to be in place for people who (for whatever reason) are vulnerable in our society. Families are often the first (and best) caregivers for their family members.
Although we do see situations where family become the abusers (elder abuse, and potentially the Britney case).
And, as you point out, not everyone has family who are willing and/or able to step up.
I would like to see changes to make it easier to get guardianship awards (it should be pretty much automatic for some medical conditions, and require a simple medical certificate from a family doctor or specialist – followed by a court hearing – with the potential ward present – to avoid chicanery) AND a simple procedure/provision for these to be reviewed and changed when circumstances (for either the ward or the guardian) change. This should be automatically triggered by an appeal from the ward or anyone else (other family, friends, etc.), and should happen every 10 years in any case. Again this should be a simple routine court appearance – no lawyers, no drama.
And, certainly for situations where the guardian benefits financially from the trust – there should be a regular external review process to ensure that financial abuse is not happening.
I love being disability-splained. I wouldn’t try to explain the experience of racism to a black person.
Listen, I am so slammed with shit for Ian and work that I am starting to hyperventilate. Also, our air conditioner broke. My lawyer says that we have to sue the school district starting now. Ian had a panic attack that was so bad that he couldn’t pick up a dinner fork last week, so I have to talk to the neurologist to rule out a physical problem before we look at increasing his meds. Steve is out in the woods with Jonah, so I’m on my own.
You guys can talk a bit on your own for this, but if I feel like conversation could do anything to make the life of a parent of a child with Down’s syndrome more difficult, I’ll shut down comments.
I absolutely respect your right to use your blog in a way that supports your goals. I use my comments to work out my ideas and I hope that those comments can help you with your advocacy and writing (though I don’t know that they do). But, I absolutely see that an intellectualized discussion about issues that affect people personally can be energy and spirit sucking.
Hope you are finding the supports you need for Ian and yourself in real life.
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