Category Archives: justice

Betty Anne Gagnon and Murder Most Foul

Content note: This post includes discussions of the murder and abuse of people with disabilities.

Betty Anne Gagnon was 48 years old when she was found curled up in the front seat of a pickup truck in the parking lot of a petrol station near Edmonton, Canada, in November 2009. Her face was heavily bruised and her body bore clear evidence of abuse.

She was dead. The coroner determined that blunt force trauma to the head was the likely cause of death. That was, in the literal sense, the cause of death, but what actually caused her death was ableism.

Betty had developmental disabilities. For 14 years, she lived independently with a caregiver in Calgary, but later moved in with her sister and brother-in-law. During the almost five year time period before her death, she was confined in a cage made of chicken wire, and forced to sleep in a tent smeared with her own feces. Or locked in a dog run in the yard. Or in a decommissioned school bus. Her ‘caregivers’ openly admitted this at the inquest into her death, where they described leaving her in the unheated bus with no toilet facilities, and they talked about the events in the hours before she was left to die in a parking lot, about how she was cold and struggled to breathe. Oh, but they called emergency services for help after they dumped her.

They are being charged with manslaughter, ‘unlawful’ confinement, and assault. I understand how the law works, and how the statutes are organised, and I understand why they cannot be charged with murder, but this was murder. It was murder after years of dehumanisation and abuse. It was murder. It was the complete and utter, total devaluation of human life.

Last week, a vigil was held to honour her, and to draw attention to the abuse of people with disabilities. As attendees at the vigil pointed out, caregiver abuse is common, it’s not commonly addressed, and sometimes it ends in cases like this.

The thing about cases like this is that they are endless. Every week, it seems, I am reading about another person with disabilities being murdered by ‘caregivers,’ and these cases drop off the radar very quickly, but I remember them. We remember them. We also remember the narrative that surrounds most of these cases, where we are reminded that caring for people with disabilities is such a burden and there must have been circumstances involved that we don’t know about, because how could we, it’s so hard to be a caregiver.

Of course, none of us are caregivers. It’s either/or, right? You are either a person with disabilities, or you are a caregiver.

I always thought, personally, that it’s pretty hard to dehumanise people, but apparently the media has no problem doing that. Very rarely do cases like this stress that there was a person involved, a human being, who is now dead. Dead because of social attitudes about the value of disabled lives, dead because of narratives reinforcing latitude in circumstances, dead because no one reported the abuse or because if someone did, the report wasn’t taken seriously. Dead because, sometimes, the media treats murderous ‘caregivers’ like misunderstood heroes.

It is sickening, and I mean that in a physical sense, to read article after article about people killing people like me, and getting away with it. And it is enraging to see how little coverage these cases get, a throwaway that happened to pop up when I happened to look at the screen, and would have missed otherwise. How many other devalued lives have been snuffed out without any awareness on the media’s part at all?

Betty Anne Gagnon was a human being. She had feelings, memories, experiences, and life. And that was taken from her because of her disabilities, because people determined that she wasn’t a person, and therefore didn’t need even the minimum standard of care you would give to a human being: A bed, a warm room, food, a place to use the toilet. She was locked up in an outdoor dog run in Alberta in the winter.

The media reported on the vigil, but didn’t really provide hard statistical information about the abuse and murder of people with disabilities, beyond making vague references to the fact that we are more likely to experience abuse. Many of those articles were specifically framed to focus on caregivers, not actual people with disabilities. Caregivers to ‘speak for those who can’t,’ reminding us, yet again, that those of us who cannot communicate in a way that satisfies others are deemed ‘silent.’

When we talk about ableism, about social attitudes, this is what we are talking about. We are talking about the fact that Betty’s life was deemed worthless because of her disabilities, and that every mainstream narrative reinforced that, right down to the complete lack of interest in her death on the part of anyone other than a handful of disability rights activists.

I remember the Bettys of this world, because so few people will.

Tracy Latimer is dead because her father is a murderer

It’s always hard for me to write a post about Tracy Latimer’s murder, especially in a space that’s got a lot more traffic than my own blog does. Where do I start? How do I express to a new audience the significance this case has in Canada, and how the murder of a 12 year old girl by her father 17 years ago changed drastically how Canadians talk about disability, and how disability is treated in Canada? Where do you start with that?

This post is going to talk about the murder of children with disabilities by their parents. I would recommend avoiding comments in most of the news links, because the comments generally turn into a referendum on whether or not it’s okay to kill disabled children.

Tracy Latimer, who had Cerebral Palsy, was 12 years old the day her father, Robert, waited until the rest of their family was at church and then carried her out to the garage, stuck her in the cab of the truck, ran a garden hose from the exhaust pipe into the cab, and left her there to die of carbon monoxide poisoning. Whenever I talk about this case, I feel the need to remind the reader: this is a means of killing we have made illegal when killing dogs, because it is considered to be so painful. This is the murder people would like you to believe is a “mercy killing”.

Tracy Latimer’s murderer, Robert, then put Tracy to bed, burned the hose that he had used to murder her, and lied to the police about how she died.

This case went to trail twice, and both times Tracy’s murder was found guilty of murder and sent to prison. He has done the bulk of his prison time according to Canadian law, and is currently doing a form of parole where he spends five days in a half-way house, and two days in his own apartment in Vancouver. This is how the law works here – in fact, I would agree with critics that Tracy’s murderer is being treated harshly by the parole board, but I also understand they want Tracy’s murderer to admit that maybe killing a child and trying to hide the evidence is a crime and that he should show some remorse. But we don’t really send people to prison here in order for them to show remorse. It’s done, let him go home.

But let’s talk about how Tracy Latimer’s murderer and the court cases around him are typically treated by the press, since Robert is in the press again, having been denied a loosening of his parole.

You’ll notice, I’m sure, that I keep referring to this as “Tracy Latimer’s murder”. If you read the newspapers from across Canada, you’ll instead see it referred to as “Robert Latimer, a Saskatchewan farmer, who was convicted of second-degree murder of his severely disabled daughter”. You will also find it referred to as a “mercy-killing”. Often Tracy’s name will only appear once, as “his 12 year old severely disabled daughter, Tracy”.

May 21, 2010: The Vancouver Sun: Latimer mercy-killing inspires new Ozzy Osbourne song: “The 10th track of Osbourne’s solo album entitled Scream, due out June 22, is Latimer’s Mercy which describes what Latimer may have felt in putting his daughter to death. The lyrics are poetic yet brutally graphic.”

July 28, 2010: The Montreal Gazette: A Wise and Sensible Verdict (This article is actually about an entirely different case, but felt the need to compare it to Tracy Latimer’s murder): “One need only remember Robert Latimer’s killing of his severely disabled 12-year-old daughter. He did it, he said, to release her from her suffering, to mercifully end her life.

Does anyone believe Robert Latimer was a cold-hearted killer?”

July 29, 2010: The Victoria Times-Colonist: Mercy killing can sometimes be honourable: (Same case as the one discussed above) “Similarly, Robert Latimer had no moral choice but to end his daughter’s agony at once by one means or another.”

August 19, 2010: The CBC: Robert Latimer wins parole review “Latimer was convicted of second-degree murder in the 1993 death of Tracy, his severely disabled, 12-year-old daughter, an act he described as a mercy killing.”

August 20, 2010: The Globe & Mail: Give Latimer More Latitude in his Day Parole: “The board needs to accept that he has paid his debt to society. He killed from compassion, according to a jury and a judge, who knew all the details of Tracy’s life and death, and was punished as a deterrent to others.”

The case is fairly consistently presented to the Canadian public as a “mercy killing”, and as the end of Tracy’s suffering. Often Tracy’s life is described as unbearable. Sometimes she is referred to as a “vegetable”. The only person who’s “side” of this story is consistently told is the man who murdered his daughter, and he is painted by the press as a man struggling against impossible odds, doing the only thing he could.

This is not what you read in the press:

In the trials, both Robert and his wife Laura claimed that Tracy was experiencing constant and uncontrollable pain. If this were true then why were they allowing Tracy to suffer when her pain was medically controllable? Their testimony conflicted with the writings in Laura’s own diary pertaining to the daily condition of Tracy. Laura’s diary stated that Tracy was often happy and smiling, and lately she had been eating well. Tracy’s teacher described her as a happy and loving person who did not show signs of extreme and uncontrolled pain, even though she had a dislocated hip. Tracy was scheduled for surgery to repair her dislocated hip which would have alleviated the pain and discomfort she was experiencing. In fact, Robert Latimer was charged with homicide on the same day that her surgery was scheduled to happen (November 4, 1993).

Many people are under the impression that the Latimers were overly burdened and lacking in support and respite service to care for Tracy. In fact, Tracy had lived in a respite home in North Battleford from July until early October, 1993. Tracy had returned home because she was scheduled for surgery. Tracy was also at school everyday. On October 12, just twelve days before Tracy was killed, Robert Latimer was offered a permanent institutional placement for Tracy in North Battleford. He rejected the placement because he said he had ‘other plans’. At this time, he had already decided to kill Tracy.

I harp on the way Tracy’s murder is treated in the press for one simple reason: The number of murders of children with disabilities by their parents has drastically increased in Canada since the Latimer case.

December 5, 1994 – Ryan Wilkieson, 16, Cerebral Palsy, Carbon monoxide poisioning similar the Latimer murder, which was in the news at the time.  Friends of Ryan’s murder, his mother, said she was distraught by the Latimer case. Murder/suicide.

May 28, 1996 – Katie Lynn Baker, 10, Rett Syndrome, starved to death. She weighed 22 pounds at her death. No charges were laid, as no one believed they could get a conviction.

November 6, 1996 – Charles-Antoine Blais, 6, autism, drowned in his bathtub by his mother. Charles-Antoine’s murderer was publically offered a job fundraising for the Autism Society of Greater Montreal, and and the head of Canada’s national autism society described her life as a total misery before Charles-Antoine’s murder. Suspended sentence.

November 21, 1996 – Andrea Halpin, 35, cognitive disabilities – shot to death by her father in a murder/suicide. He didn’t think she could live without him.

December 11, 1998 – Cory Moar,  29, cognitive disabilities – years of abuse by family members. I couldn’t find any more details after the lengthy description of the long-term injuries he sustained, because I had to throw up. You can read the inquest results in this handy PDF. Trigger warning.

May 19, 2001: Chelsea Craig, 14, Rett Syndrome, lethal dose of prescription drugs (attempted murder/suicide) Rachel Capra Craig, diagnosed with paranoid delusional disorder, later killed herself. She had been found incompetent to stand trial.

December 30, 2001 – Reece Baulne, 34, “learning difficulties”, carbon monoxide poisoning. In the suicide note that his parents wrote, they said they were killing themselves and Reece because they couldn’t care for him anymore, having been turned down for government funding.

July 12, 2004 – Jia Jia “Scarlett” Peng, 4, autism, drowned in bathtub by her mother who has been diagnosed with Bipolar Disorder. Scarlett’s murderer was initially sentenced, but the sentence was put aside due to an error on the part of the judge. She was recently sentenced to 5 years, but was released because of “time served”.

July 31, 2004 –  Ian Carmichael, 11, epilepsy and undefined “learning difficulties”, choked to death by his father who was diagnosed as having psychotic delusions as a result of side-effects from taking Paxil incorrectly. You can read David Carmichael’s webpage in which he discusses (briefly) how he murder his son (most of the page is about how Paxil made him do it). Trigger Warning.

September 25, 2004 – Charles Fariala, 36, “assisted suicide” – he first took a dose of medication and then his mother tied his hands and covered his face with a plastic bag. Wikipedia says his mother had Borderline Personality Disorder and this was a factor in her light sentence (3 years probation), but I haven’t found any other reference to her having a mental health condition, just that there were “extenuating circumstances”.

These names are part of the reason why I think Robert Latimer should always be referred to as a murderer, why I think think Tracy’s death should never be referred to as a “mercy killing”, and why I will invite Robert Latimer apologists to kindly find their way to the Globe & Mail website, since they obviously will welcome your comments far more than I will. They will not be published here.

We convict and vilify people for murdering their children all the time. Unless their children are disabled. Then, then, then, it’s “mercy killing”, and they should be defended at all costs.

Quick Hit: Parents of Disabled Children

This is gonna be short ’cause I hurt and it’s hard to think and type and all that shit what’s good for writing.

Another parent of disabled children has killed ou children. Ou regrets having done it and immediately notified police of ou actions. Responses of shock and horror from media and across internets.

But. It doesn’t take long before there are articles like “Parents of Children With Autism: We Struggle Alone” at the Dallas Morning News. This is bog-standard parent of autistic child shit and not worth reading. (Y’all may consider yourselves warned about clicking through and especially about reading any comments that may be present.) It is easily summarised: Parents say, “Oh that was so horrible I’d never ever never even think for a moment of harming my autistic child. But…” There’s a lot of subtextual sympathy for the person who murdered ou children. Just as there always is. In the midst of all the parents-are-on-their-own there are blithe assumptions that help is available. It costs a lot of money but is available. All the accompanying photos are of apparently white people in nice homes.

Nothing we’ve not seen before.

It’s notable because I happened to come across it in the print edition of the paper and its placement there. On the front fucking page of the Sunday fucking paper. Below the fold and tucked into the bottom right corner but still. Being parents of disabled children is so hard that killing them is an option many people will sympathise with is news big enough for the front page. Of the Sunday fucking edition. This is prime newspaper real estate.

The Dallas Morning News uses it for this shit. And my wife wonders why I’m so ‘hypercritical’ of news about disabled people.

Recommended Reading for 13 August, 2010

You know, if you’re into the Gregorian calendar (also, Friday 13th! Spooky!). Why hello there, gentle reader! This is my first Recommended Reading. This is very exciting for us all. While this should be a time of celebration, be cautioned: comments sections on mainstream media sites (and it’s all MSM articles in this edition of RR!) tend to not be safe and we here at FWD/Forward don’t necessarily endorse all the opinions in these pieces. Let’s jump right in, shall we?

A group of people lying in a circle on the grass, hands stretching towards and touching in the middle. There are three wheelchairs scattered about nearby, and some rope on the ground. Rocks are just visible to the bottom of the shot. The photo was taken from the top of a flying fox.

Photo by Louise Dawson. From the photo’s Flickr page: ‘Participants in this Outward Bound group, with a variety of physical disabilities, had just tackled a ropes challenge course as part of a 9 day program.’ The photo was taken in November 1996.

IRIN Africa (from the UN Office for the Coordination of Humanitarian Affairs): SENEGAL: Children with disability – when stigma means abandonment. Warning for some highly unpleasant treatment of disabled children.

The shame attached to mental and neurological disorders is a strong force, said Dakar hairdresser Ibrahim Gueye, the father of a child with a severe learning disability.

“In Senegalese society it is quite difficult to have a child with a mental disorder. The prevailing belief is that it is a curse; it is difficult to get family and friends to accept such a child.”

In the District of Columbia in the USA, from the Washington Post: Independent administrator to oversee D.C. compliance in disability lawsuit:

The fight over appointing an administrator is the latest chapter in the Evans lawsuit, which was filed in 1976 over the District’s abysmal care of people with developmental disabilities.

That’s right, the case has been going for thirty-four years.

From the Ghana News Agency, 50% of Brazilian buses for persons with disabilities:

Vice President John Dramani Mahama on Wednesday announced that 50 per cent of buses expected from Brazil would be friendly to persons with disabilities.

[…]

He said the constitution of the National Council on persons with disabilities was the beginning of the educational programmes that would help to redress their challenges as public institutions noting that the transport system still lacked facilities for them.

In the UK, from the Guardian, Why the next Paralympics will be the greatest ever by Ade Adepitan, Paralympian and TV presenter.

The news that Channel 4 is going to spend millions on the London 2012 Paralympics and give it 150 hours of coverage is a landmark moment. The BBC did a fantastic job of increasing the Paralympics’ profile, but it usually ended up on BBC2 – second fiddle to the Olympics. I only found out about the Paralympics when I was 14 – before then I didn’t know it was possible for someone in a wheelchair to compete in a global sports event.

In the Canadian town of Cobourg, at Northumberland News, Electronic voting a win for disability groups:

The system ensures security by sending each registered voter a pin number by mail; that number can then be used to access the electronic ballot either online or on the telephone.

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading[@]disabledfeminists[.]com.

…And At This Point, I Don’t See It Stopping Anytime Soon

Courtesy of amandaw I bring you this stellar article that once again rubs in my face how brilliantly miserable the VA is scratching the surface of realizing what is wrong with they way they even see women veterans. If you read along carefully you can even see the lightly sugar-coated condescension artfully woven in TIME writer Laura Fitzpatrick’s story. It really is a piece of work, from the dismissive way she re-counts the testimony of the “presumed” treatment of a victim survivor of sexual assault at the hands of a medical professional (because they NEVER do THAT) down to the detailed description of the very girlie attire of the staff at the impressively mostly women-run facility in Palo Alto. I crave to read the way a man’s shoes click-clack on a hospital hall’s floors in such a manner. But it is a very cliche description etched in the halls of descriptive-writing history, INORITE, so who am I to argue with the laws of good writing. I am, after all, only an amateur.

The news isn’t that the VA is failing women veterans. I’ve known that for quite some time. Really, I have. I have encountered some of the treatment described to some degrees first-hand:

I remember having to hunt around for a toilet in an ill-fitting paper gown at my own exit screening, past several other open, occupied exam rooms. I was the only woman there. They had no sanitary napkin to offer me and it was an embarrassing scene trying to find a place where I could insert a tampon. I was fighting back tears when I finally found a (presumably) unisex bathroom.

So My Dear Friend Ms. Fitzpatrick’s dismissal of Anuradha Bhagwati’s story, the one she gave as testimony before the House Committee on Veterans’ Affairs is ill-received. It isn’t too far-fetched for me to imagine the way she recounts “the ham-handed manner in which a male gynecologist, upon being told by a patient that she had been sexually assaulted, left the exam room and — presumably to beckon a female staff member — yelled down the hall, ‘We’ve got another one!'”. I can easily see the inept professionals at the inadequate facilities just stumbling over how to even grasp a way to provide basic courtesy to a patient who isn’t like them. And failing. Miserably.

The news here is that they seem to have no idea how to fix it, and no set, immediate time line in mind for seeing progress. Sure, Secretary of the VA, Eric K. Shinseki recently, at a forum at the Women in Military Service for America Memorial in Arlington, Virginia, has said that he hopes to have the VA ready to serve 100% of veterans in 25 years, but what is going to happen to this generation of women veterans who are already being ignored? To the women veterans of the wars past who have been fighting for help all along already?

Because their concerns are already being swept aside. You can already see as things like their urinary-tract issues being categorized as simple “gender differences”, because women react to the desert differently. Sure, possibly. I’ve seen this intimated a few times. People looking to explain away womanly behavior in high stress situations. Oh! They didn’t want to stop the convoy! Well, why is that? Maybe because we know that women are far more likely to be killed by their fellow servicemembers than by combat in combat zones that they learned defense mechanisms, as confessed to by Col. Janis Karpinski. Women tended to drink less water, as little as they thought they could get away with, to avoid using latrines or having to stop roadside alone with men out of fear of sexual assault. And it killed some of them. If you remember, though, Karpinski was even dismissed as a woman scorned because of the Abu Ghraib scandal, anyhow, so we can’t win for losing. She was just ratting out her old boss because she got in trouble.

Some of it is true, though. Most of the VA’s 144 hospitals do not have the proper facilities to even offer privacy to non-men patients, let alone provide gynecological care, or as I mentioned above, pads. The TIME article notes a hospital in Salt Lake City which announced that it delivered its first baby this past October (the article mentions that its average patient is 78 and male), but the day after the little girl’s arrival they didn’t know how much she weighed (I cringe to think how much more they couldn’t provide) because they didn’t even have an infant scale.

Women veterans are spiking in numbers. They, funnily enough, are not the same as men. That means they are not the same as the average patient, such as that the Salt Lake City hospital are used to dealing with, and their health care with be different. Even if you line up the matching parts, the treatment for heart disease and blood pressure, to my lay knowledge, is not the same. The numbers have been growing since The Great War, and surged after we had the need to call the next one World War II. It took until 1988 for the VA to start providing even limited care to women veterans.

Today, women veterans in need of help from the VA are of an average age far younger than the average male veteran (for obvious reasons) and have different needs. They are at least twice as likely than civilian women to be homeless (with only 8 facilities in all the U.S. available to help homeless women veterans with children). They are likely to be mothers when they are. Many of them returning from combat zones — yes, combat zones, why do you ask? — are coming home to families and are more likely than their male counterparts to get divorced following combat connected tours. They are really damned likely to get asked if that is their husband’s or boyfriend’s shirt they are wearing, or asked for their husband’s social by a thoughtless agent on the phone. They are the forgotten in war. Doubly so if they served in a branch of the military that isn’t on the forefront of the public’s mind as “really the military” (as slave2tehtink has said, Aircraft carriers tend to not be zipped around by civilians, yo). Extra-specially so if you had a thinkin’ job, like “nuke” or “spook”, and your Traumatic Brain Injury (TBI), Post Traumatic Stress Disorder (PTSD), or Military Sexual Trauma (MST) didn’t happen “In Country” (Iraq or Afghanistan), the only sanctioned places where these things can occur, you know.

It’s frustrating as hell. And while I don’t believe that the VA is intentionally forgetting about us, I don’t believe that they are doing everything that they can to make sure that it gets better faster.

And honestly, I don’t think writers like Ms. Fitzpatrick are helping. But maybe I am jaded and have been at this for too long. But the VA needs an overhaul, stat. Pretty words from the Secretary of the VA and promises that it will be better in a couple of decades just aren’t good enough.

Recommended Reading for August 10, 2010

Wheelchair Dancer at Feministe: On the Cover [trigger warning for discussion of violence]

Regardless of how disability plays out in Aisha’s world, the vast majority of readers of TIME live in a culture that understands disability as tragedy. As shocking. As among the worst things that can happen to you (bar death). Mainstream American culture thinks it knows disability and knows how to read it. Ms. Bieber has a history of photographing disabled bodies[. . .]But the work she does in the Real Beauty series does not come through in this photograph — perhaps because of the context and placement of the image. Here she (and or the editor) uses Aisha’s disability to trade upon the readership’s sympathies and their horror: this and other unknown kinds of disability are a direct result of the US departure from Afghanistan. This is not about Aisha; it’s about the message of the article.

Cripchick at Cripchick’s blog: tell me who i have to be to get some reciprocity?

don’t feel the way white supremacy creeps into your life and plops itself in the center?

in the last wk, white ppl have:

  • told me how to rearrange my words as to be more approachable.
  • made my need to have ppl of color time about them.
  • asked me invasive medical questions about my body.
  • thanked me over and over for teaching them about oppression.

Cara at The Curvature: Disabled Student Assaulted on School Bus; Bus Driver Watches and Doesn’t Respond [trigger warning for description and discussion of severe bullying]

Most readers here who have ever ridden a school bus will have at some point been on at least one end of bullying and harassment. Many will have at different points throughout their childhoods and adolescences acted as both bullies and victims — myself included among them. Big news stories since I stopped riding a school bus have left me with the impression that little has changed. School buses are places where bullies, harassment, and violence thrive. And as all current or past school bus passengers know, students with disabilities, particularly cognitive or intellectual disabilities, are especially vulnerable.

Daphne Merkin at the New York Times Magazine: My Life in Therapy

This imaginative position would eventually destabilize me, kicking off feelings of rage and despair that would in turn spiral down into a debilitating depression, in which I couldn’t seem to retrieve the pieces of my contemporary life. I don’t know whether this was because of the therapist’s lack of skill, some essential flaw in the psychoanalytic method or some irreparable injury done to me long ago, but the last time I engaged in this style of therapy for an extended period of time with an analyst who kept coaxing me to dredge up more and more painful, ever earlier memories, I ended up in a hospital.

William Davies King at PopMatters: In Defense of Hoarding

To be sure, a special label like compulsive hoarding seems required by many of the heart-rending cases they recount, people neck-deep in the slough of their despond, overwhelmed by more whelm than can be weighed. But sadness and dysfunction are hardly rare or new. What is new is the social imperative to ram open that front door. Bring in the wheelbarrows, the commanding case worker, and the camera—especially the camera, which enlists us all in the drive to evacuate these cloacal dwellings. Reality TV rolls up its sleeves, puts on the rubber gloves, and hoards the evidence while [authors] Frost and Steketee stand alongside the labyrinth, notepad in hand, giving that Skinnerian nod.

Vulnerability Indexes, Homelessness, and Disability

(Note: this originally appeared in a modified form on my tumblr.)

Vulnerability indexing is a new trend in homelessness services. It started in LA and NYC but is now being used a bunch of cities and localities of all sizes around the country. Instead of traditional outreach services, these projects use a “vulnerability index” survey to collect data from street-based homeless folks (rather than people in shelters, living in cars, doubled up on couches, etc). The data is then used to rank the homeless people, in order, by their “vulnerability,” or likelihood of dying within the next 12 months if they remain on the street.
That ranked vulnerability list is then used as a priority list to provide the people with services, starting with housing.

In providing housing and services, these programs use a “housing first” model, which means that unlike the vast majority of homeless housing services, individuals are NOT required to be clean of drugs/alcohol or engaged in mental health services prior to moving in. Once they move in, they’re provided with all the supportive services they want, including substance abuse treatment, mental health treatment, education and job training and placement assistance, etc.

I strongly support these programs and have been very excited to see them gaining traction in LA. (we have project 50 in downtown LA, project 30 in the San Fernando Valley, and others pending right now.) I also think these programs are of special interest from a disability perspective because of the extremely high prevalence rates of mental and physical disabilities among the long-term chronic homeless, and the way these disabilities make it difficult, if not impossible, for this group of homeless people to move towards stable permanent housing.

Here are some of the reasons I think this approach makes a lot of sense:

1. It targets the population that needs it the most, re-opens discussions about serving the chronically homeless
These projects target a subset of the homeless population – the chronically homeless. This group is defined as people who have been continuously homeless for at least a year. This is a minority of the overall homeless community (about 23% of all homeless), as most people cycle in and out of homelessness in periods of 3 months or so. The chronically homeless are generally single adults, not families, and generally have some kind of substance abuse issue and/or mental disability and/or physical disability. Most policy analysts believe that nearly every chronically homeless person has either a mental or physical disability.

This population is considered extremely difficult to serve, as lots have tried to engage with services in the past and not found it useful, so are considered “service resistant.” This is a nice way to say that most people and agencies have pretty much given up on them and don’t have any hope of bringing them into services, much less into stable housing. This is also a nice way to say that these homeless folks have correctly figured out that most homeless services aren’t appropriate or beneficial for them, so there’s little point in trying to engage with service organizations. This is partly because homeless services are not really set up for people with disabilities – getting necessary accommodations in a shelter is enormously difficult because of the already extremely limited resources available. If you have PTSD and need a door that locks in order to sleep, a shelter is not for you. If you have a service animal, shelters are not for you. If you need even a minimal level of nursing or medical care, shelters are not for you. (Not that the streets are better at accommodating disabilities.)

These chronically homeless people are, unfortunately but frankly, likely to die. the vulnerability index looks at factors that “place them at heightened risk of mortality,” including 3 or more hospitalizations or ER visits in the last year, aged 60 or above, cirrhosis of the liver or end stage renal disease, HIV+ or AIDS, or co-occurring psychiatric, substance abuse, and chronic medical conditions (tri-morbidity). When this tool has been used in communities, the most vulnerable person identified by the tool usually has all of those risk factors and has been homeless for 20+ years. Can you imagine how difficult it would be for a 62 year old man who is HIV+ and has a physical and mental disability and an active substance abuse problem to enter a shelter, especially after over 20 years of street homelessness?

Traditionally, this group of the chronically homeless is a group that people have given up on. Not just the public, but even homeless service providers. But the first iteration of this program, in the Times Square area of NYC, has produced before and after stories that are flooring. A woman who lived on the streets for 20+ years as a heroin addict is now housed and working as the concessions manager at the movie theater in Times Square. Looking at the before and after pictures seemed like she’d moved backwards in time – she looked 20 years younger. These are the people who we walk by on the street and feel like they’re beyond help and beyond hope. We just don’t think people can come back from that – and these programs are proving that assumption to be absolutely wrong.

Another benefit of focusing on the most vulnerable folks is that it communicates that same message – you are not beyond help or hope, there are programs that can provide meaningful and beneficial assistance – to the homeless community itself. If folks see that the agency promised housing to someone with a substance abuse disorder, a mental disability, and 20+ years on the street, and then delivered on that promise, they’ll be motivated to participate with the agency and trust them in a way they wouldn’t trust the shelters or outreach teams that hadn’t housed that guy in the past. These programs usually see a “tipping point” once the first few, most vulnerable, people are housed – then the rest of the community believes in the promise of potential housing and is motivated to cooperate with the service agency.

2. These programs make economic sense.
These targeted programs are usually seen as an alternative to simply ignoring the homeless and continuing to not spend city and county funds on them. Because there are not a lot of homeless services or programs targeting this group, the perception is that we are currently spending zero dollars on them, and any targeted program will be a dramatic increase in funds directed to the chronically homeless. This could not be more inaccurate. Actually, this group is consuming an astounding amount of public funds, through county health programs, police and jail funding, and public benefits such as food stamps or general relief funds. A recent study by the Economic Roundtable here in LA found that these most vulnerable folks are consuming over $8,000 in county funds PER MONTH, through multiple ER visits, jail time for quality of life infractions, and health care services received in jail. When these folks are moved into housing – even fully subsidized funding with inclusive supportive services – it’s a net savings for the government.

So this popular conception that we’re not already spending a bundle on these chronically homeless folks is simply inaccurate. We, as city and county governments, are already spending an enormous amount of county health funds, justice system funds, and social system funds on this group, with no discernible improvement in their quality of life or life expectancy. (This New Yorker article is a great discussion of how these costs can mount up for a single homeless individual.)

I know that cost savings is likely not the most important aspect of these programs for this audience, but these economic arguments are extremely powerful in persuading localities who do not understand why they would benefit from targeting funds and assistance at the chronically homeless.

3. The overall economic effects of the project help those homeless who aren’t directly targeted.
The economic benefits of these programs mean that there will likely be additional homeless service dollars available for use at other places in the homeless continuum of care – meaning that the program could generate benefits for the non-chronically homeless as well. This is much needed. Currently, in LA, it’s really hard to get into a homeless shelter. that’s because the “emergency” homeless shelters – where you’re supposed to stay for 30-90 days before moving into a “transitional” shelter – are backed up. Because all the transitional shelters are full. Because there’s no permanent housing available, so there’s nowhere to transition to from the transitional shelter. So the transitional shelter is serving as permanent housing and the emergency shelter as transitional shelter and the folks who need emergency shelter … sleep in their cars, or on the floor of a friend’s apartment. This system could benefit from some more cash to build permanent housing – money that might be available were we able to reduce the significant existing county expenditures on the chronically homeless.

4. Housing First and other harm reduction policies make sense.
Currently, a lot of housing placements require that the person moving in be clean and sober and, if they have a mental disability, be actively engaged in mental health treatment services. As you can imagine, this turns into a lot of chicken and egg problems. If you are a homeless person living in LA’s Skid Row, which is overrun with illegal drugs and alcohol, and have no money to afford rehab or treatment, you are never going to be eligible for that housing, even if you actively want to stop using. You don’t have anything to lose while living on the street – even going to jail gets you a bed and some food – so there’s absolutely no incentive to stop using. If you’re likely to die within 6 to 12 months, it’s likely that being high during the interim will be more pleasant than being sober.

If you’re placed in an apartment, though, you quickly learn that ongoing abuse is going to cause financial problems in affording the apartment and social problems in not disturbing other neighbors. There’s also an incentive – you don’t want to lose the apartment. The programs have found that people are motivated to enter treatment when receiving housing, even if it’s not a requirement of maintaining housing. There have been similar results with mental health treatment.

Even aside from the incentive effects, these Housing First programs are humane. I know a bunch of people who wouldn’t be able to get apartments if they had to show clean drug tests to get the apartment and to maintain tenancy, but they’re allowed to do that because they have money.

SO, in short: even though it sometimes feels a bit squicky to be ordering homeless folks in terms of likeliness to die and priority for housing, these programs make a lot of sense conceptually and have had amazing effects on the ground. Of the 50 most vulnerable in downtown LA, all of which had disabilities of some kind, 41 are currently in housing. I don’t see how this could have been done any other way.

Catch-22 Policies: Medi-Cal and Transplants

I ran across a situation recently that required me to figure out how the Medi-Cal program – California’s implementation of the Medicaid program, which provides government-funded health insurance to low-income people – handles people who have received transplants. What was happening was so illogical and ill-conceived that I was astounded to find out that it was exactly what the regulations and structure of the program wanted to happen. This is an example of state and federal policy just Not Making Sense.

Not all low-income people can qualify for Medicaid, but have to have a “linkage” to the program in addition to being poor. One of the linkages is have a disability that meets the Social Security Administration’s (SSA) definition of “disabled”: having a physical and/or mental impairment that prevents the individual from engaging in “substantial gainful activity” for at least 12 months. “Substantial gainful activity” just means work where the individual is earning a certain level of wages that SSA thinks is enough to support themselves, a fixed dollar amount that SSA adjusts every year. So, basically, a person has to be completely unable to work for at least a year in order to be eligible. Once they start getting Medi-Cal on the basis of disability by proving they meet that standard, the program will periodically re-evaluate them to see if their condition has improved and if they could now return to work. If the Medi-Cal program thinks the person’s disability has improved, they’ll be cut off the program and no longer have access to health insurance.

This reflects the underlying policies and values that caused the program to exist – policymakers want people to work and support themselves and will only step in to provide benefits if there’s some compelling reason the person is unable to do so. (Note: I have a lot of problems with those assumptions and am not endorsing them myself, just outlining what we can assume the policymakers believed and intended.) So, if a person is later able to support themselves through work, we’ll cut off the benefits because there’s no longer a compelling reason for them to not be supporting themselves.

It’s easy to anticipate a number of potential problems with those policies, mainly around the cyclical nature of many disabilities. But I want to focus on specifically is people who have received organ transplants. When a person needs a transplant, they will certainly meet the disability standard and be able to get on Medi-Cal. Someone in dire need of a kidney or liver transplant is not going to be working 40 hours a week – they are likely going to be in the hospital for a lot, if not all, of their time. So they’ll get Medi-Cal coverage, which will pay for the transplant surgery and hospitalization and all that sort of thing.

After the transplant, time goes by. SSA says they will assume someone will continue to be disabled for one year after a transplant operation, but after the first 12 months, the Medi-Cal program will start evaluating the person to see if they continue to meet the disability standard. Most times, people won’t, because recovering from transplant surgeries is difficult and takes a long time, even if there’s no significant complications or organ rejection problems. So people continue to be covered by Medi-Cal.

Now, some more time goes by. And for some people, the transplant has resolved their underlying health problems. (This certainly isn’t true for all transplant recipients.) They’ve recovered from the transplant surgery. They’re doing well. And when Medi-Cal comes around to re-evaluate their disability, the may not meet it anymore. They may not be so severely impaired that they’re unable to do any work at all. And for most people, this would be a good thing. They’re getting better. They’re improving. They have more ability to function, to care for themselves, to be independent. And most of them are immensely excited about and proud of that progress. They have worked hard for it.

But it can mean that their Medi-Cal gets cut off. That their health insurance goes away entirely. And this is an enormous problem, because no matter how well someone has recovered from transplant surgery, she has to keep taking immunosuppressant anti-rejection drugs so her body doesn’t begin to reject the transplanted organ. And my understanding is the vast majority of transplant recipients have to keep taking anti-rejection medications for the rest of their lives. So when a transplant recipient’s health insurance gets cut off – how are they supposed to afford those expensive immunosuppressants? The Transplant Recipient’s International Organization estimates that “the average annual cost for immunosuppressive medications for kidney transplant recipients is approximately $11,000.Transplant Living estimates the costs to be even higher, ranging from $17,200 to $27,500 per year, depending on which organ was transplanted.

For transplant recipients cut off Medi-Cal for disability reasons – which means they are still poor enough to qualify for the program – those costs are completely beyond reach. This is especially true because the person has likely also just lost eligibility for cash benefits from Social Security for no longer meeting the disability standard – so they must go out and figure out how to start earning enough to pay for rent, food, utilities, transportation, and the medication costs. And if they can’t manage to get enough money for the drugs? Their body will start to reject the transplanted organ, and they’ll go into kidney failure, or liver failure, or heart failure, or other organ failure. At which point they will go back to the hospital, extremely ill, and go back on the transplant list . At which point they will be so sick they can get back on Medi-Cal, which will pay for their hospitalization and the next transplant surgery.

Obviously, this is immensely cruel. Requiring someone who has just managed to recover from the first transplant surgery to abandon their medical treatment so they get increasingly sick, potentially fatally sick, to undergo another invasive and traumatic transplant surgery – if an organ even becomes available! – is beyond inhumane. But even from a purely economic perspective, it makes no sense. Certainly immunosuppressant medications are expensive – expensive enough that people can’t afford them without help, so it’s not without cost for the Medi-Cal program to pay for them. But organ failure and transplantation are way more expensive in comparison. Looking at a kidney transplant, the 30 days of hospitalization during pre-transplant organ failure cost $16,700; organ procurement costs are $67,500; admission during the transplant procedure and recovery is $92,700; the physician for the transplant surgery is $17,500; the post-transplant admission is $47,400; and then the immunsuppressant drugs cost $17,200. A report by Milliman Research (pdf) has even higher numbers, estimating the cost of a liver transplant at $523,400.

I think there are compelling arguments for a policy change that fit within my values and priorities – to avoid human suffering – but this cost data suggests a strong argument for a policy change that fits within the values of those in power – reducing costs. To make this argument to those people, I would analogize: if you buy a house, you put in maintenance, you don’t just abandon it to fall apart. It makes sense to put in upkeep and maintenance on property to protect the value of the property. The Medi-Cal program is buying these people organs, it should maintain those organs. But that’s not what the program rules say should happen. That’s not the policy. Continue reading Catch-22 Policies: Medi-Cal and Transplants

Dear Imprudence: Getting It Right! (For Once!)

s.e. smith recently passed on a question from a Dear Prudence column (3rd question down) that, well, actually gets things right. We were both pretty surprised! The question asked is shockingly similar to my own situation, but I swear I didn’t write in to ask it. The questioner writes:

I work in a social-services-related field and have bipolar disorder. I am open and honest about my diagnosis. … I have been having issues with one of our interns, who is in her mid-20s and pursuing a master’s degree in clinical psychology. On the surface, she is very pleasant. The problem is, anytime she and I disagree about something (which is often, because apparently she knows everything and I know nothing), she rolls her eyes, waves her hand, and declares that I am “just bipolar.” This is alarming to me because she intends to work with such populations, and though I can take it without becoming suicidal, many bipolar people can’t. Part of me wants to simply ignore her, but when I do, she continually asks me, “What’s wrong?” She is probably going to be with us for another year, and I want some peace and a little less condescension when I go to work.

Hey! I have bipolar, and I work in a social-services-related field! The difference is, if I ever encountered anyone who put a hand in my face and dismissed me as “just bipolar,” I would have a written warning in their file before they could even blink. This is not only because I don’t tolerate that kind of flip dismissal, but also because the attitudes of social services staff towards people with mental illness can have an enormous impact on the quality and effectiveness of services delivered to people with mental illness. It is damaging to the agency as a whole to have those attitudes expressed to clients by agency staff and it is an amazing disservice to approach people who need social services with such a dismissive, discriminatory, and oppressive attitude. To her credit, Prudence clearly sees this aspect of the issue:

Since she’s an intern and plans to go into your field, take seriously your duties to guide this obnoxious young person… If she doesn’t stop, or escalates her rude and dismissive behavior, keep your cool and explain to the higher-ups that while “Brittany” may have some promising qualities, she needs some serious attention paid to how she treats others.

This is exactly right. Social service agencies need to ensure that staff do not transmit these attitudes to agency clients. Unforutnately, based on my experience, it is not uncommon to encounter agency staff with these kinds of attitudes, primarily because agencies tend to provide little training or guidance to staff in dealing with clients with mental illness. Staff are then forced to rely on the (mis)information about mental health conditions they’ve accumulated through their lives to shape their opinions and actions, which can often lead to attitudes and behaviors like the one discussed by the questioner.

I’ve found that most people have a vague conception of what depression is and that it could be connected to suicide, but have little conception of how depression can affect a client’s everyday life. This is especially problematic when agency staff expectations for client’s behavior doesn’t account for the effects of their depression. For example, we often need to gather and review a client’s entire medical record to evaluate the merits of a potential disability claim. This can be a very complicated process – submitting medical records requests to every medical provider from which the client has ever received treatment, wrangling with records departments who want to charge exorbitant fees, following up with records departments who ignore, misplace, or deny records requests. Understanding the effects of depression is key for agency staff in how they instruct clients to gather these records, how they respond if or when a client fails to follow through, and the extent of assistance the staffer is willing to provide the client in this task. I’ve found that for a client with depression, an instruction to “gather all your medical records for us to review” can be so overwhelming and intimidating that they are unable to manage the task. Staff are likely to perceive this client as “not really committed to their case” and insufficiently willing to cooperate with the agency in pursuing their goals. This can mean the difference between providing the assistance a client needs to succeed and closing the case because the client “didn’t really want this benefit.”

Beyond depression, there is virtually no understanding of the variety of mental health disorders or the impact they can have on an individual’s functioning and ability to participate in their own advocacy. Schizophrenia and dissociative identity disorder are conflated and often ridiculed. Disorders on the autistic spectrum are not understood at all. Post Traumatic Stress Disorder is often dismissed as an overly sensitive reaction to trauma that “everyone has in their lives.”

This lack of understanding means that staff are completely unable to provide reasonable accommodations to clients with mental health disorders. Which in turn means that clients with mental illness, overall as a group, receive less effective and meaningful services from the agency as a whole. Which means that not only are agency resources more likely to benefit folks without mental health issues, but those expended on clients with mental illness are more likely to be wasted and not “land” effectively because they cannot effectively create the change the client is seeking. So, everybody loses.

The solution is more training, education, support, and guidance for agency staff on understanding these issues and providing effective services to this community. While attitudes like those of the intern in the question are unfortunate and disappointing, some of the blame has to be laid at the foot of the agency itself for failing to provide training, policies, and protocols to ensure staff are educated on these issues and know better. So while Prudie’s recognition that the intern’s attitude is fundamentally unacceptable and must be addressed if she hopes to continue in that area of work, I would go one step further and advise the questioner to push for training and support for all staff at her agency to ensure everyone has the information and tools they need to provide effective services to clients with mental illness.

Bad Behavior, continued: More on School Discipline

s.e. smith recently wrote about abuse of autistic students in Pennsylvania and the distressing rise in abusive ‘discipline’ for students with disabilities. Ou mentioned a recent study from Delaware that found that students with disabilities are more likely to be suspended for ‘behavior’ problems than students without disabilities. Ou discussed some easy ways that a disabled student’s behavior could be categorized as disruptive and make them subject to discipline:

Are students suspended for not using modes of communication familiar to teachers? For needing to stand or pace while learning? For needing a quiet environment for learning, and for becoming upset when one is not provided? For needing orderly and precise schedules? For not completing assignments they don’t understand or find impossible to finish? For attempting to create and maintain personal space? For expressing any number of needs and needing a space where they are accommodated? For tics in the classroom?

I had all this fresh in my mind when, at work, I came across a recent report on school discipline in the Los Angeles Unified School District. Although one of the organizations involved in researching and preparing the report is an organization focused on mental health disabilities, the executive summary does not have any data or recommendations about students with disabilities. But it did have a couple of points that I found very interesting and thought were worth discussing.

The first underlines the point that s.e. smith was making in ou’s previous post – that disproportionate discipline demonstrates broader societal disregard for the targeted group. The report re-frames the student dropout crisis as a “student ‘push-out’ crisis,” arguing that discipline reform “requires respect for children’s dignity, meaning schools will not exclude, get rid of, or criminalize them for misbehavior or underachievement… If the policies and practices of every school were geared to fulfill their human rights, our children would not be excluded, tracked, and pushed out… [nonconforming] students are more likely than other students to be ‘pushed out’ of school and ultimately find themselves in the juvenile delinquency or adult criminal justice systems.”

s.e. said the same thing in ou’s earlier post:

This is a reflection of a lot of problems with the way society views and treats people with disabilities, and of serious inadequacies in the education system. Teachers who abuse students clearly should not be in the classroom, yet they are, and they are sometimes allowed to remain even after abuse is reported. Teachers who have received no training in working with disabled students shouldn’t be assigned to classrooms with disabled students, yet they are.

The primary focus of the report was highlighting the extreme racial disparities in LAUSD discipline. African-American students make up 22% of LAUSD students, but about half of disciplinary actions involve African-American students. These students were also more than twice as likely to be suspended than other ethnic groups. As the report concludes, “the gross disparities apparent in the past and current application of suspension to African-American students by LAUSD make clear that … the District employs practices that are inconsistent with federal, human rights, and state mandates.”

Although the report highlights racial disparities, it seems that one of the primary recommendations of the report would benefit all students targeted for discipline, including those with disabilities:

Priority: Share Power with Parents.

Recommendation: Share the first signs. Schools shall contact parents at the first sign that something is wrong with a student’s behavior so there is an opportunity to take preventative measures rather than wait until an issue escalates into a major problem.

Recommendation: Share planning and decision-making. Schools shall include parents on their [discipline] teams and give them equal say in decision-making and planning related to [discipline policy.]

Recommendation: Create shared trainings. The District and schools shall conduct [discipline policy] trainings jointly with administrators, teachers, and parents in the same room.

Recommendation: Enable parents to enforce accountability and transparency by schools. Schools shall establish parent committees to observe discipline practices, especially in the classrooms, play areas, and cafeteria. Schools shall make disciplinary data, practices and procedures, and outcomes and benchmark data available on a monthly basis to parents and the community so they can also monitor implementation of [discipline policy] and do whatever necessary to hold LAUSD accountable. The District shall effectively inform parents of what schools are required to do according to [discipline policy], and what parents should do if their schools are not following through.

A final thought: it would be very interesting to see data of discipline rates of disabled students of color. They must be through the roof.