Category Archives: policy

California Judge Says State of California is Still Providing Inadequate Health Services to Inmates

Currently, health care in California’s prison system is under court supervision, in the aftermath of a lawsuit pointing out that conditions were so poor in California’s prisons that an average of one inmate per week was dying due to inadequate health care. Huge numbers of people in California’s prisons are disabled; just for example, people with developmental disabilities make up around four percent of California’s inmate population. This adds considerably to the complexity of providing health care services in California prisons, as does the very high rate of infectious disease observed in most prisons.

The state recently attempted to end the receivership of its prisons on the grounds that conditions had improved. More studies were conducted to assess the current situation, and Judge Charles Breyer issued a tentative ruling that the court supervision must continue because conditions in many California prisons still do not meet basic standards of health and safety. The human and civil rights of California prisoners are being violated, in no small part because the state is struggling with a massive prison population paired with epic budget cuts, which is pretty much a recipe for disaster.

Here’s the judge, discussing why he decided not to end the receivership:

Breyer, brother of U.S. Supreme Court Justice Stephen Breyer, went further in his proposed findings.

The inmates “are regularly verbally, physically, and sexually assaulted, exploited, and discriminated against in California prisons,” he wrote. “Developmentally disabled prisoners are punished for violating prison rules that they do not understand, and are punished at hearings which they cannot comprehend.”

They regularly have their food and property stolen, or give it up to buy protection or help from other inmates. They often lack the help they need with basic hygiene, or with getting routine medical treatment, the judge found.

At one point, Breyer suggested that the state sought to end his oversight “simply because ongoing Court supervision is annoying them.”

Billions of dollars are being spent, and it’s still not enough. Of the 17 prisons expected, only two ‘met the minimum standards for health care.’ Perhaps unsurprisingly, one of the biggest areas of failing was in preventative care. The prison environment is stressful and crowded, which tends to increase susceptibility to infectious disease while also making inmates more prone to the development of mental health problems. For intellectually and developmentally disabled inmates, prison conditions are even worse, as many prisons don’t know how to handle these inmates, don’t provide basic services they need, and essentially leave them at the mercy of the general population.

It’s not surprising that HIV, tuberculosis, and hep C infection rates are all on the rise in prisons as a result of poor preventative care and infection control. We should be asking ourselves when it was decided that a prison sentence should also came with an almost certain sentence for developing an infectious and potentially fatal disease, just as we should be asking ourselves why prison rape continues to be tolerated.

Prisoners are not receiving the health care services they need, when they need them. That’s a problem. It’s a problem when the state is imprisoning people in my name, using my tax dollars to fund it, and it can’t even promise me that those people will have access to basic health care services. It can’t promise that the people being imprisoned ‘for public safety’ will be safe themselves in prison, and this is categorically unacceptable. We owe a duty of care to prison inmates, no matter who they are, no matter what crimes they have committed, and prisoner rights is one of the most ignored areas in the human rights community in the United States. The conditions in California’s prisons can be seen elsewhere across the United States, where prisoners die because they can’t access medical care in addition to being raped, exploited, and abused.

The findings of the report on California’s prisons recommend that the most effective way to improve access to health care for California inmates is to reduce the prison population by releasing inmates. Early release has already been promoted to deal with overcrowding as well as budget problems. However, we also need to approach this from the other side; it’s important not just to reduce the prison population, but to put fewer people in prison in the first place. This requires a major overhaul of California’s mandatory sentencing laws and approach to law enforcement, both of which are long overdue.

There are also colossal intersections with race here. Nonwhite people and people of colour are far more likely to be incarcerated in the United States. This is not because members of these communities are more likely to commit crimes, despite the beliefs of some conservatives. It is because they are more likely to be profiled as criminals, more likely to be arrested and prosecuted when a white person would get a warning, more likely to get longer prison sentences, more likely to be convicted. We need to address the racialised dynamics of the ‘justice system’ in the United States to get at the bottom of why so many people are in prison.

I’m glad that the decision to continue court supervision of health services in California prisons was made. It’s clear that the prison system can’t regulate itself or provide the services it is legally and ethically obligated to provide, and I hope the court can compel it to do so. At the same time we work to secure safer and healthier conditions for prisoners now, I want to see a radical shift of the way we handle law enforcement and justice for people in the future.

Pondering Illicit Usage of Accessible Spaces…

I was driving back from dropping Kid off at school today, and I noticed that a delivery truck at the public library was using the accessible parking and accessible ramp as parking and loading dock space…

We have been having some conversations about accessible parking spaces and the policing of those spaces, and the blocking of those spaces and/or using of those spaces by persons who do not need them or have the right to them.

What thoughts, have you, gentle readers, on this particular use of these spaces? I have seen this in other places around our base, though I can’t recall if I have seen such a thing in other non-base places, because I have just begun to notice them (perhaps this is a product of some kind of privilege of mine). Even if it is early morning, should delivery vehicles be taking advantage of these spaces like this?

An open letter to non-disabled people who use disabled parking spaces

Dear abled/non-disabled people without disabled parking placards who use disabled parking spaces anyway,

I don’t care if you want to use the space “because it’s so convenient.”

I don’t care if you only “need” to use the space “just for a minute.”

I especially don’t care if you back up your illegal use of said disabled parking space with some bizarre justification like, “But some people FAKE being disabled to get these permits, so what’s the difference?” or “Well, if a person in a car with a blue placard shows up, I’ll move” or “But there isn’t anyone disabled who needs to use the space here right now, so what’s the harm?”

The harm is that I or other disabled people are so often witnesses to your saying these things, and we are presumably expected to not react at all to your taking advantage of something that is not for you. I personally do not own a motor vehicle, so while I don’t need a disabled parking permit, I also don’t need your entitlement complex and your basically telling me — a person with disabilities — that some of the regulations intended to benefit me and people like me are rules that can be bent by you if it’s the most convenient option for you, an able(d) person.

Just don’t do it. It’s illegal and carries penalty of a possible fine for a reason.

This sort of legislation? Is not intended to benefit you, or be a convenient thing that you can take advantage of when you feel like it. Most of the world is already set up for you. These “convenient” parking spaces don’t have to be set up for your use, too.

…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.

Crude Violations: BP Is Dumping Toxic Waste In Low Income Communities of Colour

The Gulf oil spill that has been capturing the news cycle in the United States for the last few months finally appears to be under control, and now we’re faced with a common problem: We have a whole lot of waste from the spill and associated cleanup, and it needs to go somewhere. This includes crude oil, equipment used by cleanup crews, soiled booms, and all kinds of other spill-associated detritus.

According to a story published at Colorlines last week, nine landfills in the Gulf region have been selected as sites for disposing of waste. Waste management authorities claim the material isn’t toxic, which means that regular municipal landfills, rather than landfills specifically designed to handle hazardous waste, are being used. Of the nine landfills chosen, five are located in low income communities of colour.

This is not a coincidence. While it is true that there are a number of primarily nonwhite communities in the Gulf, and that many of these communities are also low income, thus making it statistically more probable that at least some of the waste would end up in such communities, this case is clearly an example of environmental racism. There is a very long history in the United States of pushing unwanted toxic waste into low income communities in general, and communities with large nonwhite populations in particular.

There have been rumblings over the last few months about where BP is putting the oil spill waste, and most of those rumblings have focused on outraged white communities. This distracts neatly from the far more serious issue, the fact that most of this waste would end up in nonwhite communities, and that these communities would experience serious long term consequences. Focusing on white communities also allows the media to completely ignore the overt racism involved in deciding where potentially toxic waste ends up.

From the start, the oil spill has disproportionately impacted people of colour. Many of the cleanup workers were people of colour, and BP also used primarily nonwhite prison labour in oil spill cleanup and tried to hide it. Now, with the spill cleanup winding down, waste from the spill is being dumped on nonwhite communities even as these communities struggle to recover economically from the impacts of the spill. They can look forward to leaching of oil and chemicals from their landfills  in the coming decades, and reports on the ground also indicate that the waste is already poorly controlled, with oil slicks and tarballs showing up around communities being used as dumping sites.

Given that this waste is supposedly ‘nontoxic,’ why were cleanup workers wearing protective suits? Given that this waste is supposedly ‘nontoxic,’ why are people who have been exposed to  it getting sick? Given that this waste is supposedly ‘nontoxic,’ why is care being taken to ensure it doesn’t end up in privileged communities?

Crude oil can contain things like benzene, chromium, mercury, sulfur, toluene, and xylene. These substances are known to have deleterious effects on human health; at the very least, skin irritation and difficulty breathing. The oil spill waste also contains traces of dispersants, known to be toxic. And the government wants to stand by the claim that the waste isn’t toxic? Dumping these waste in facilities poorly equipped to handle it will result in long term environmental repercussions, in addition to human health  problems.

I’ve written here before about how hazardous waste disposal methods tend to disproportionately impact communities of colour, and how they are most definitely a disability rights issue. Environmental pollution is a disability rights issue, and it’s a social justice issue. Toxic waste makes people sick. Making people sick is not ok, especially when familiar patterns of oppression can be seen in who is exposed to the greatest risks. If this waste is nontoxic, surely it can go in any landfill, and it would make sense to use landfills as close to the coast as possible, right? So the waste travels the shortest distance? What exactly was the selection process behind the nine landfills identified as sites for Gulf spill waste?

BP, like other major oil companies, has a long history of engaging in environmental pollution, including unauthorized dumping of materials known to be toxic. The vast majority of this pollution occurs in communities least equipped to fight it, and when oil companies are caught doing it, often the biggest punishment is a relatively small fine. In this case, BP isn’t being clandestine: the company is being openly invited to dump waste. The claim is that it’s ‘nonhazardous,’ but is it? Even if it’s not toxic, is it really the kind of thing we want leaching out of landfills and into waterways and farmlands?

These communities will be dealing with the repercussions of BP’s dumping well into the future, just like communities all over the world where people are sickening and dying because of toxic materials present in the environment. Just like communities where rates of chromosomal anomalies are skyrocketing as a result of exposure to toxic substances. Communities with limited support systems to help sick and disabled community members are the ones disproportionately facing an increase in chronic conditions and disabilities. A long term policy of dumping toxic pollutants on low income nonwhite communities and refusing to provide support for the consequences sends a pretty clear message to members of those communities, as well as to the rest of society.

We need to be talking about the connection between environmental pollution and racism and we need to be combating plans to dump hazardous waste on low income communities of colour, from protesting clearly racist environmental policy to working in solidarity with communities who are actively fighting toxic waste disposal in their landfills and on their sacred lands.

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.

CDC Study Reveals Poverty as Major Contributing Factor for HIV Infection

The Centers for Disease Control and Prevention (CDC) in the United States recently released a study showing that in heterosexual communities, people living in poverty are five times more likely than the general population to be infected with HIV. For impoverished communities, where people are living above the poverty line, but not living well, people are two and a half times more likely to be infected.

This just in: Poverty is bad for your health.

Just so we’re all operating on the same page, the current poverty line in the United States is set at an annual income of $10,830 USD for a single person, $22,050 USD for a family of four. There’s a reason I was gravely concerned about the AIDS Drug Assistance program recently. This study shows that people living in poverty aren’t just less likely to be able to access HIV/AIDS treatment, they are also more likely to need that treatment in the first place.

Guess who is most likely to live in poverty in the United States? Black, Native American, and Latin@ populations. People with disabilities. Young people and older adults. We’ve known for a long time that all of these groups are more likely to have health problems as a direct consequence of living in poverty, and this study shows us that poverty is also a key factor in HIV infection rates among these groups. In 23 US cities, we are looking at a ‘generalized epidemic’ in the heterosexual population; that’s a fancy way of saying ‘this is not going away unless we do something about it.’

One obvious solution would be outreach and education programs. Provision of medical care. Access to safer sex supplies. Community education provided by people actually living and working in these communities who can provide that education in an accessible format.

Yet, there are a lot of barriers to doing this. There’s the furor from US conservatives opposed to any kind of community education, outreach, and healthcare when it comes to anything even tangentially related to sex; after all, if we hand out condoms, that’s like saying it’s ok for people to have sex! As Cara Kulwicki points out at The Curvature, there’s also a serious stigma against sex workers when it comes to funding for HIV/AIDS work. Not only do we not want to help sex workers, we don’t want to provide funding to any organisations that work with them.

At Racewire, Kai Wright notes:

Today’s CDC study establishes that the U.S. epidemic is instead best understood as two separate epidemics–one in poor neighborhoods and one in the rest of the nation. That’s because HIV prevalence is a shocking 2.1 percent among heterosexuals in the poor neighborhoods CDC studied. These are explosive findings that ought to fundamentally redefine our understanding of the U.S. epidemic and its gravity.

This study is a stark illustration of intersectionality in action. If we’re going to talk about disparities in HIV infection, we need to talk not just about poverty, but about race, the social structures that cause certain classes of people to be more likely to live in poverty, and the way these systems intertwine.

What the CDC is telling us is that people who live at the intersections of oppression are much more likely than the rest of the population to be infected with HIV, and that this is, in part, our collective fault, for failing to adequately serve vulnerable populations. For failing to address the tremendous class disparities in the United States and for choosing to ignore the clear intersections within those disparities; there is absolutely no reason why entire classes of people should be more likely to live in poverty than others.

Phill Wilson, writing at the Black AIDS Institute, underscores the importance of viewing race and poverty as interconnected, not separate, issues when evaluating the results of this study and the HIV/AIDS epidemic as a whole:

So, the question is: Is race or poverty the driver of HIV in Black communities? We believe this is essentially a difference without a distinction. In America, Black people are disproportionately poor. Almost 25 percent of Blacks live in poverty, compared to 9 percent of Whites. According to a study by U.S. Department of Agriculture, nine out of every 10 Black Americans who reach the age of 75 spend at least one of their adult years in poverty. The uncertainty about why Blacks are disproportionately infected has never been about biological or genetic determinants–or for that matter even difference in levels of risk behavior. It has always been driven by social determinants of health: socioeconomic status, high rates of sexually transmitted diseases, high rates of incarceration, man sharing (knowingly and unknowingly) due to gender imbalances, lack of access to healthcare, lack of a regular health provider and low HIV literacy. These overlap significantly with the issues driving the AIDS epidemic in poor communities of all races.

This study challenges a lot of assumptions about how HIV is understood in the United States. It clearly shows that by focusing on injection drug users and men who have sex with men, we’ve done a tremendous disservice to other communities at profound risk for HIV infection. HIV has been stigmatised from the start, it dovetails very neatly with a number of social oppressions in the United States, and our chickens are coming home to roost now.

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

Celebrating Us: Notes for an address at the 7th Annual Simply People Celebration

John Rae is a disability rights activist in Toronto, Ontario, Canada, and a member of The Alliance for Equality of Blind Canadians. This speech was delivered by Rae on July 20, 2010 as part of the Simple People celebration, which is in turn part of Toronto’s Disability Pride.

Tonight is for us, and about us! Tonight is a time for us to celebrate our accomplishments and to redouble our efforts to bring about true equality for all persons with disabilities in Canada and around the world.

This year, Canadians with disabilities are celebrating Canada’s ratification of the UN Convention on the Rights of Persons With Disabilities (CRPD). While it may not provide us with a lot of new rights, it sets out in far greater detail than any human rights code or the Charter of Rights and Freedoms ever did what a truly accessible and inclusive Canada can look like, in important areas of life that are critical to our participation in the economic, political and social life of our communities – transportation, employment, education, communications, access to information, etc. The Convention also requires Canada to collect and disseminate data and to submit a comprehensive report to the Secretary-General of the United Nations within two years after ratification and every four years thereafter on measures taken, and civil society is to be directly involved in the development of these reports. This means involving us!

The development of this Convention traveled a unique path. It took the least amount of time of any UN Convention to be concluded, and it involved far more participation from civil society than ever before. That means involvement by us, and many groups representing persons with disabilities participated actively in the negotiations at the UN that resulted in this Convention. There are important lessons to be learned from having this kind of direct participation in developing any new initiative that directly affects our lives.

Last year, the President of the Alliance for Equality of Blind Canadians, Robin East, developed a new way of addressing our needs and aspirations. He coined the new phrase, “rights holders.” We are Rights Holders! What does he mean?

Too often, governments like to lump all of us, consumers, parents, service providers, etc. under the same umbrella of “stakeholders,” and while all of these groups may very well have a “stake” in the outcome of a new piece of legislation, policy or program, we are the ones most affected. We are different, and must see ourselves as “rights holders,” and not just another group of mere stakeholders. What this means is that we must occupy the primary and preeminent place at any table that is discussing anything that directly impacts our quality of life.

You are all familiar with the favourite phrase of the disability rights movement, “Nothing about us without us!” Now that Canada has ratified the UN Convention, it is critical that we rights holders participate as directly in its implementation as we did in its design, to ensure that it makes a tangible difference in the lives of all Canadians with disabilities, to make it become Canada’s national disabilities Act.

By contrast, the much heralded Accessibility for Ontarians With Disabilities Act (AODA) continues to move at a snail’s pace. After over five years, only one of the initial five accessibility standards has been issued as a regulation, though more are expected later this year. It is hard to imagine that Ontario is even close to being on track to achieve full accessibility by the far off date of 2025, and it is hoped that Canada’s ratification of the UN Convention will spur some renewed commitment and action to the AODA.

It is too often argued by representatives from governments and the obligated sectors that they “would like to do the things we wand and need, but these changes will simply cost too much.” We have countered that the real barriers are not cost, but a lack of political will and a question of priorities.

The Ontario Human Rights Code has covered persons with various disabilities since 1982. Governments, the public and private sectors have had over 25 years to make their premises, websites, products and programs fully accessible. How much more time do they need? If they have ignored their responsibilities and dragged their feet over all these years, stop blaming us – stop blaming the victims. It’s simply not our fault.

After the preposterous expenditure of an estimated $1.3 billion (that’s billion) on security for the G-8 and G-20 Summits, and countless millions of dollars on our involvement in the war in Afghanistan, persons with disabilities never want to hear the cost excuse ever again … never again! Resources are not unlimited, but whenever a government really wants to do something, it seems to magically find a way to finance its priorities.

So what am I asking you to do?

1. Write letters to the Editor of your local newspaper, raising disability issues;

2. Ask all candidates for Mayor and Council in the upcoming municipal election about their platforms, and what they commit to do to advance our agenda;

3. Get more involved in the disability rights movement. Join a group like the Alliance for Equality of Blind Canadians (AEBC), Citizens With Disabilities Ontario (CDWO) and sign up to receive updates from the Accessibility for Ontarians With Disabilities Act alliance, or find the consumer organization in your area that best represents your issues and ideas.

In closing, I want to mention just one more point. Many of us who have been on the front lines, in the leadership of our movement for many, many years are getting old and growing tired. We need you to get more involved. We need your energy, skills and new ideas. We cannot expect the system to hand us our rightful place, our history teaches us that it rarely does! Moving our agenda and achieving our goals is up to us. We must make it happen.

Some of you will be familiar with the phrase “Full Participation and Equality.” It’s an excellent phrase. It’s not a new phrase. It was the theme of the International Year of the Disabled Person (IYDP) way back in 1981.

Since then, we have come a part of the way up this road, but we still have far, too far to travel. Today, we seek legislation and new programs that will lead to that elusive goal, but today we must spend far too much of our time preventing the introduction of new barriers.

It’s time governments, the private and public sectors recognized our value, and commit to work with us to realize the IYDP motto.

We want our rights. When do we want them? Now!

Deportation by Default: 15% of Immigration Detainees in the US Have Disabilities That Impair Their Understanding of Deportation Proceedings

Human Rights Watch and the American Civil Liberties Union released a report yesterday shedding some shocking light on the immigration detention system in the United States. According to ‘Deportation by Default,’ 15% of immigration detainees have mental illnesses or intellectual disabilities that render them unable to present their cases or understand immigration proceedings in court. Many were held for indefinite periods, like Jose Antonio Franco Gonzalez and Guillermo Gomez-Sanchez, two men who were held in detention for almost five years without adequate care.

Representation is not mandated or guaranteed for people undergoing immigration proceedings:

Some were able to hire lawyers, others received pro bono representation – but there is no automatic right to court-appointed counsel, and most were not represented, the report said. (source)

I know I couldn’t represent myself in immigration proceedings and have a fighting chance at winning, personally, and I have a lot less working against me than many immigration detainees do. The fact that counsel is not appointed for people who may be navigating an unfamiliar legal system in a language they may not understand is, to be blunt, a horrific miscarriage of justice.

The ACLU concludes its summary of the situation with this rather damning commentary:

Due process is part of judicial integrity. It’s a basic principle that this country has decided to prioritize. It’s one of our greatest exports — we send people all over the world to talk about rule of law and how to reform judicial systems but we’re not doing it here in our fastest growing judicial system [the immigration courts].

Not every non-citizen with a mental disability is entitled to remain in the United States; but everyone is entitled to a fair hearing and a chance to defend his or her rights. If the US government is going to detain and deport individuals with mental disabilities, it must do so in a way that respects their human rights, honors US human rights commitments, and ensures fair and accurate court decisions.

The circumstances and situations documented in this study, incorporating interviews with 104 people, are something that the United States should be deeply ashamed of. The justice system in the United States is often touted as a paragon of equal access and fairness; we are told that everyone has access to due process, to representation in court, to the right to understand legal proceedings. Yet, for disabled immigration detainees:

Deficiencies exist throughout the arrest, detention, removal, and deportation process, violating the human rights of affected individuals and offending both American and international standards of justice. The shortcomings include no right to appointed counsel; inflexible detention policies; lack of substantive or operative guidance for attorneys and judges as to how courts should achieve fair hearings for people with mental disabilities; and inadequately coordinated care and social services to aid detainees while in custody and upon release.

The report documents cases of people who did not understand what deportation meant and lacked the ability to comprehend deportation proceedings; one subject asked to be deported to New York, for example. Some interview subjects had intellectual disabilities or untreated mental illnesses that made it functionally impossible to understand what was happening, while others were in extreme emotional distress and had difficulty comprehending the proceedings, let alone communicating. At least two cases included US citizens wrongfully subjected to deportation proceedings. One North Carolina native had bipolar disorder, was unable to understand the case against him, and could not represent himself in court, so he was deported to Mexico. Another, a US citizen since childhood, would have been deported if it weren’t for the actions of an attorney with the Florida Immigrant Advocacy Centre.

The report urges Congress to require appointment of lawyers for all people with mental disabilities in immigration courts. It recommends mandatory training for immigration judges to recognize mental disabilities, and calls for repeal of a regulation allowing a mentally disabled detainee to be represented in court by the warden of the detention facility. (source)

This recommendation would certainly be a step in the right direction if it was followed. It’s clear that we have been subjecting disabled detainees to grave injustice, and it’s going to take a lot of work to remedy that. People with disabilities are also poorly served in the US court system in general, but attorneys at the ACLU point out that deportation proceedings are among the most complex legal matters people can encounter, with the fewest protections in place; if there’s any place where inability to understand court proceedings has high stakes, a deportation hearing is definitely high on the list.

“Owing to their mental disability, people may not be able to share their experience with the judge in a way that helps him understand that they have a mental condition or a valid claim,” says Deborah Fowler, Texas Appleseed’s legal director. “This is particularly true for asylum seekers who have suffered trauma or persecution in their home countries.” (source)

Another serious problem for people trapped in immigration detention is that it can be stressful, exacerbating mental health issues and causing emotional distress for people with intellectual disabilities. Being shuffled from facility to facility has documented ill health effects on nondisabled people, and those effects can be even worse for people with disabilities, especially when they are denied adequate care and treatment. Judges, uncertain about what to do with detainees who clearly do not understand the proceedings, can place cases in a form of legal limbo, leaving people adrift in the immigrant detention system for years.

If this report outrages you as much as it does me, I urge you to contact Congress to tell them that you would like to see this report followed up, and want to see Congress taking the concluding recommendations seriously. If you are in the US, your own Representative is the best bet for a contact and/or you can write your US Senators. If you are outside the United States, please consider contacting a member of the House Subcommittee on Immigration, Citizenship, Refugees, Border Security, and International Law or the Senate Subcomittee on Immigration, Refugees, and Border Security and explaining that while you are not in the United States, you are gravely concerned by this report and feel that it reflects poorly on the position of the US in international society (and anything else you care to add). You can also drop a line to President Barack Obama, should you feel so inclined.