Category Archives: poverty

Unfounded Assumptions and Faulty Logic, Ahoy!

s.e. emailed me an alert to this Atlantic post by Derek Thompson about the potential hidden costs of failing to extend unemployment insurance benefits, with a warning that I would likely ‘enjoy’ it. So I clicked through with trepidation. Rightfully so. I’ll excerpt the relevant piece here so you don’t need to reward this nonsense with pageviews (and if you do, avoid the comments, which are full of “unemployed people are fundamentally lazy” tripe):

Consider this statistic, from Peter Orszag at an event in DC called The Future of American Jobs Part II: The number of applications for the Social Security Disability Insurance has increased from an average of 500,000 per quarter in 2006 to 750,000 in 2010. Why? Well, it’s unlikely that American disabilities themselves have increased by 50 percent in the last four years. It is more likely that healthy Americans discouraged from the awful job market have sought out disability insurance and collected Social Security money even though they’re not actually disabled.

SSDI requires that its recipients be unable to work. Unemployment insurance, on the other hand, requires that its recipients look for work. Like any government program, UI can be gamed, and sometimes it surely is. But the fundamental point holds: If we stop supporting unemployed people with cash, there is a risk that we kick them out of the labor force onto disability insurance, where we pick up the tab by paying for them through SSDI not to work and not to look for work.

WHERE TO EVEN BEGIN, amirite? Let’s start with identifying the huge, glaring factual error in the argument – the assumption that all SSDI requires for eligibility is “that its recipients be unable to work.” You may not be surprised to learn that the long term disability insurance program through the federal government actually requires that the individual’s inability to work be due to a disability, rather than due to a lack of jobs at their skill level, or a lack of jobs that pay living wages, or any number of other reasons that a person would be unable to work. Yes, this disability benefits program actually has requirements about having a disability! And the Social Security Administration requires quite a lot of verification from medical professionals (who it considers more objective and reliable than people themselves) that it independently reviews and assesses before determining whether a person has a disability that qualifies them for SSDI. You cannot just walk into a Social Security office and demand SSDI benefits, no matter how long you’ve been out of work.

Now let’s look at the statistic he is using to lend legitimacy to his argument: “The number of applications for the Social Security Disability Insurance has increased from an average of 500,000 per quarter in 2006 to 750,000 in 2010.” What does this statistic tell us? It does not tell us anything about the trends, if any, of people receiving SSDI – just the number applying for it. Granted there is some cost to Social Security to review and assess these applications, but the main cost Thompson is raising is the amount of money spent on SSDI benefits – about which this statistic tells us absolutely nothing. Even the knowledge that there are 250,000 more SSDI applications per quarter this year than in 2006 tells us nothing about whether the application (or approval) rates are anywhere near the actual underlying prevalence rates.  Even if disability rates have remained perfectly stable, we have no idea whether the 500,000 applications per quarter in 2006 was undercapturing the number of people who were actually eligible for SSDI.

(This built-in, unstated assumption that the starting point in increasing disability benefit rates was the “correct” or desired rate and that any increases are dirty lying cheating fraudulent people is extremely common. You see it in discussions about changes in special education enrollment, rates at which students are identified with learning disabilities, and more. And the assumption that the lower rate correctly reflects the actual prevalence in the population is so ingrained that people, including Thompson, do not even state that they are making such an assumption. It should be obvious to the reader, they imagine, that lower disability benefit rates are right!)

But Thompsons’ main point – that people currently in the workforce may shift to disability benefits if they are unable to find work – gets to the conflation of “disabled” and “unemployable” that I’ve discussed before. There are certainly people who would meet the criteria for SSDI who are employed right now, influenced by any number of factors including the stigma against not working, the difficulty of verifying eligibility for SSDI, and the likely higher income available through work. Unemployment may motivate those people towards SSDI, but so could a bunch of other things, like failure to provide reasonable accommodations at work and employment discrimination against people with disabilities. But a whole lot of people who are unemployed are simply ineligible for SSDI, because they’re unemployed for economic reasons and do not have a disability that would qualify them for SSDI.

A potential takeaway from this kind of thinking is that for reasons including saving money on disability benefits, we should mitigate and eliminate barriers to employment for people with disabilities. But this post concludes that because everyone on unemployment could pull down the higher SSDI benefits if they got the notion, we should support the unemployed. That’s not relevant either to people with disabilities or without them and is fundamentally nonsense.

By 8 December, 2010.    blaming, news, policy, poverty  ,  

How Can We Get More Bilingual Health Care Providers?

Los Angeles County, where I live, is incredibly diverse, both racially and linguistically. According to the Asian Pacific American Legal Center’s 2008 report on Language Diversity and English Proficiency in LA County (pdf file), more than half of Los Angeles County residents speak a language other than English at home. “The 10 most frequently spoken languages countywide are: English, Spanish, Chinese, Tagalog, Korean, Armenian, Vietnamese, Farsi, Japanese and Russian.” The report lists 39 distinct languages and almost 10,000 residents speak another language not on the list. About 29% of county residents are Limited English Proficient (LEP), which means they have some degree of difficulty communicating in English.

All of these people will have some contact with the health care system at some point in their lives and ideally, at more than one point. And, according to the U.S. Department of Health and Human Services’ Agency for Healthcare Research and Quality, having a health care provider who speaks the same language as the patient has lots of important benefits to patient care (internal cites omitted):

A growing body of literature finds that language concordance between patients and providers (i.e., both speak the patient’s primary language well) results in greater patient understanding, leading to increased satisfaction, better medication adherence, greater understanding of diagnoses and treatment, greater well-being and better functioning for persons with chronic disease, and more health education.

The report goes on to note that only some of these problems can be mitigated by having the conversation interpreted. Using an interpreter can also disrupt the human connection between provider and patient and curtail full discussion. Interpretation, no matter how competent, is somewhat cumbersome and inefficient.  This all means that having the health care provider be bilingual is by far the best solution, both for patients and providers. And often, cultural conceptions of health issues like pain, disability, and mental illness can be very important in understanding how a patient is describing symptoms or experiences, so a native speaker is the best.

The problem, of course, is that not all health care providers are bilingual. This means those who can speak another language are relatively valuable, so they can be more exclusive or take more high-paying jobs. If you are a patient who can afford to pay high rates or has great insurance, you may be able to get a provider who speaks your language, but you’re not guaranteed. And if you are a poorer patient and rely on emergency rooms and county health clinics for care, you just have to hope to get lucky. As I once heard it put, “If you’re a Cambodian therapist, you can basically write your own ticket. You’re not going to work at the County Department of Mental Health.”

So how can we go about getting more bilingual health providers, especially for relatively low-paying jobs to care for low-income patients? There’s no obvious answer. Here are some ideas, and their potential drawbacks:

  • Require all health care providers to become fluent in another language. Providers all go through some training and licensing procedures, so we could build in a language requirement. There are some obvious difficulties – how would we ensure languages were proportionally represented? would we match providers to areas where there was a need for the language they spoke? how do we make sure someone learns, say, Hmong? would the cost of administering all those language proficiency tests be better spent elsewhere in the health care system? It also doesn’t serve our goal of having providers be native speakers.
  • Recruit more native speakers of non-English languages to become health care providers. This could take a lot of different forms – scholarships and incentives for these people to enter training programs or medical schools, reaching out to younger kids to stimulate interest in health care professions, providing tutoring or other support resources, or a number of other methods. Most of these things would take a very long time before they resulted in a change in the makeup of health care providers. It’s also unclear how effective any of these methods are, and how much they cost.
  • One possible solution is always to throw money at it. We could dedicate a lot of funding to paying big salaries for providers who speak other languages. While that would probably work, and relatively quickly, it would cost a lot of money. And would continue to cost a lot of money to maintain. And, most importantly, would not do anything to increase the total number of health care providers who teach non-English languages and if more were induced to enter the profession because of the high salaries, it would cost more and more money over time. To compensate, there would be fewer and fewer health care providers overall, or some other significant effect on the health care system from the significantly shrinking resources.

Personally, I support a little bit of all three. (Equivocation is a policy-maker’s prerogative.) Increasing incentives for health care professionals to know and learn non-English languages, aggressive recruiting for native non-English speakers to become health care professionals, and paying bonuses or other incentives to bilingual providers. To make the best of the current situation, I also support training interpreters and ensuring they’re used appropriately.

Are there other policies you think would help the problem?

The Absolutely True Diary of a Part-Time Indian: The Awkward Lines of -ist Language

[The scene sets with OYD, a slightly pale yet never-the-less still quite indigenous woman, sitting down to her trusty Macbook Pro, a laptop named “Lappy”, who has seen better days. She sets down and opens up her “drafts” tab under FWD/Forward, where she notices that egads! she has been working on this book review for over a month, and Oh my! how it must have been a long time since she has completed one. She cracks her “double jointed” knuckles like she does it too often, tucks a strand of brown hair behind her ear. She drags the review out of “drafts”, dusts it off, reaches for anything caffeinated, and begins to type.]

The Absolutely True Diary of a Part-Time Indian 1st edition cover. A black background with plastic toy figures of a cowboy and an indian, with the title and author's name in chunky green and white letters.I like media where I can consume it, enjoy it, and get a sense that I am experiencing something that touches on experiences that are my own, that seems real to me with out over-exaggerating them (mostly). I also enjoy it when certain traits about characters are touched upon as a description, as part of who that character is, but then they are not brought up as Huge Deals throughout the entirety of the book.

These are a few things that really endeared Alexie Sherman’s The Absolutely True Diary of a Part-Time Indian to me. Sherman created a protagonist “Junior”, who was born into the world with several oppressions, living on the axis of poverty, race, and disability. Within the first few pages of the book Junior gives a pretty good run down of how each of these things affects his life, and has always affected his life from the moment he was born. From never having quite enough to eat, to the way his “grease on the brain” has given him a stutter and seizures.

But that is where Alexie leaves the discussion about Junior’s disability. It is just a part of him, a description of his character. It isn’t some great obstacle he has to overcome. His disability isn’t some plot point, and it doesn’t help the other people around him become inspired about trying harder or appreciating their lives more. In fact, he goes into great detail early on, in those first few pages, to explain that the reservation kids often bully him. From an excerpt on NPR:

You wouldn’t think there is anything life threatening about speech impediments, but let me tell you, there is nothing more dangerous than being a kid with a stutter and a lisp.

A five-year-old is cute when he lisps and stutters. Heck, most of the big-time kid actors stuttered and lisped their way to stardom.

And, jeez, you’re still fairly cute when you’re a stuttering and lisping six-, seven-, and eight-year-old, but it’s all over when you turn nine and ten.

After that, your stutter and lisp turn you into a retard.

And if you’re fourteen years old, like me, and you’re still stuttering and lisping, then you become the biggest retard in the world.

Everybody on the rez calls me a retard about twice a day. They call me retard when they are pantsing me or stuffing my head in the toilet or just smacking me upside the head.

I’m not even writing down this story the way I actually talk, because I’d have to fill it with stutters and lisps, and then you’d be wondering why you’re reading a story written by such a retard.

Do you know what happens to retards on the rez?

We get beat up.

At least once a month.

Yep, I belong to the Black-Eye-of-the-Month Club.

Sure I want to go outside. Every kid wants to go outside. But it is safer to stay at home. So I mostly hang out alone in my bedroom and read books and draw cartoons.

Then, he moves leaves it there. We know he deals with these things as part of his life, but they do not define his life. Even the most horrible and hurtful parts of his life with disability are not defining his life.

Some other things that are not defined by Junior’s particular disability:

  • His grades in school — He does well in school, and this point becomes part of the main plot, so I won’t give too much away for anyone who plans to read this book.
  • His ability to participate in sports — Junior plays many sports, including contact sports. He is a good basketball player, playing on the school’s team.
  • His ability to have romantic relationships — Despite his believing how shallow it is, Junior has a girlfriend, and as it turns out, she actually likes him! Imagine that!

The other aspect of this book that I enjoyed, though I don’t expect every reader to view the same way, is that the Indian Reservation depicted has a lot of truth to it from my own experiences of having grown up on and around my own as a girl. Twenty, and even ten years ago, our reservation life was not so far off from the one described here, with the exception of perhaps the climate being slightly different, and perhaps I was too young to understand and remember anything about crime rates. But there was poverty, and then there was crushing poverty where I am from. There was alcoholism, though I would venture that perhaps it wasn’t the hot-button stereotype that I feel is portrayed at times in Alexie’s book. I don’t know. Every Native community is different, for sure, with their own unique set of problems. While I feel that there is a lot of truth to what Sherman Alexie has created, I also feel that there is a sweeping generalization. So, it hits and it misses, and I would encourage you to read it for yourself and decide what you think.

There are a lot of instances of language that I would not recommend in a progressive or social change setting going on here in this book. I see it being useful and very much achieving its purpose, for example, there is a very racist joke told by a white boy that Junior meets on his first day of school, using the “n”, which I will not repeat, but which is disparaging to Natives and Black people alike. Junior demonstrates an intolerance for it, without missing a beat, and in Junior’s point of view, the kid respects him for it. But, I have to wonder, is it because of how Junior addresses it, or because this particular student realizes that what he said was hurtful and wrong? The demonstration of how wrong racism is in YA literature is something I want to see more, but I question, sometimes, the ways in which we see it handled. There is almost no discussion or consideration of why this is wrong, just the very visceral use of very hateful words (like above, with the use of the “r” word in so casual a context). Just like using rape as a metaphor to show that a “bad” guy is bad, I don’t need to see or read -ist language for shock value to confront -isms. However, a well placed word could have the proper effect if viewed through the proper lens, but I don’t know if that is quite so obvious here. Junior simply reacts, saying he has to defend Black people, and Indians, but he doesn’t go into much else.

I will also note on the Wise White Person, or WWP, as I will. It takes a WWP living on the rez to point out all of Junior’s problems early on, and essentially Save Him! from the Rotten Destitution! Without a WWP, why poor Junior might be dead, the victim of a trailer fire started by grease from frybread, helplessly drunk and passed out.

The Absolutely True Diary of a Part-Time Indian, is an excellent book, worth reading, for many reasons, but I caution you, gentle readers, there are many themes addressed, in very direct and raw ways that I am still not sure that I wholly approve of, and yet, as a non-white, Native American, woman, with a disability, I am not fully sure that fully disapprove of all of them either.

Oh, except for the sexist language. I found no use for that at all. I found no point where that taught any lesson, except where young boys were using it to show that “Hey!  Women and girls’ bodies are weak, so calling you a woman or a girl body part means you are weak! Har har!” You get no points there, Alexie. Misogyny wins again! Whee!

The Veil of Ignorance

As some of you who follow me on Twitter know, I spent the weekend in Kansas City with my grandfather, who had experienced an as-yet-to-be-diagnosed health crisis and was in the hospital. (Nothing is dire and he’s expected to make a full recovery and be discharged in the next week or so.) At home in Los Angeles, most of my hospital experience is with Los Angeles County Hospital, an enormous facility that is massively overloaded in trying to meet the health care needs of Los Angeles County’s indigent population. In Kansas City, I was spending time in the Rehabilitation Care wing of what seemed to be a very well funded private hospital. And the differences were monumental.

Los Angeles County Hospital serves about 39,000 inpatients a year, with over 150,000 emergency room visits a year. This is utterly massive, and has led to a lot of complaints about overcrowding, with allegations that emergency room visitors wait an average of 35 hours to be seen – sometimes without even having their vital signs taken. A recent LA Times story showed that likely because of administrative policy hiccups, a patient was admitted to another county hospital and was an inpatient for two days before being assigned a doctor. In another county facility, since closed down, a woman waiting to be seen in the ER bled out and died in the waiting room without being seen. Having spent some time at those hospitals, I can attest that while the relatively new buildings are pretty nice, the old building, in which a lot of care is still provided, feels like a rickety relic of the early 1970s, with sliding metal doors that make the patient rooms feel like drawers in a filing cabinet.

In contrast, this other hospital felt like a palace. There was free valet parking for outpatients. All of the rooms were private and spacious, with room for 9 visitors to fit inside and with a window looking out on trees in gorgeous fall colors. The nurses all knew my grandfather’s name, and his wife’s name, and my name, and my mom’s name. The emergency room in the facility had a gorgeous waiting room looking out into an interior courtyard with fountains and plantings and even a creek running through it. I visited that waiting room often, because that’s where the vending machine with the Diet Coke was, and I never saw more than a handful of people there. Certainly nobody was going to die there without being seen.

Describing the two hospitals like this, I can guess which one we would all choose for ourselves, our loved ones, and our friends. (The nice hospital, just to be clear. I’d rather be at the nice one.) But often when we’re making policies – especially policies for the health care of low-income people – policy makers are not thinking about how they would like to be taken care of, the facilities they would like to be in. They are making policies for other people, policies they know will never apply to them.

That’s why I’m such a big fan of the concept of the “veil of ignorance.” The idea comes from American philosopher John Rawls’ book Theory of Justice, considered an important text in political philosophy.  The veil requires a person to create a standard of justice without knowing what place or value they will have in that society. As Rawls described it:

Among the essential features of this situation is that no one knows his place in society, his class position or social status, nor does any one know his fortune in the distribution of natural assets and abilities, his intelligence, strength and the like. I shall even assume that the parties do not know their conceptions of the good or their special psychological propensities. The principles of justice are chosen behind a veil of ignorance.

I like this idea so much. This would require us to make health care policy without knowing whether we would have the most super expensive fancy health insurance policy possible, or have no health insurance and depend on the indigent care available through the county; without knowing whether we would have a disability or be in perfect health; without knowing any of the categories or identities we would be a part of.

It is, of course, impossible to think about policies without drawing from personal experience, but I believe that policymakers should do their best to assume this veil of ignorance. At the very least, they should consider how their policies will apply to and affect the most disadvantaged person possible, to understand the full scope of potential problems that could be created by the policy. Now if only we could get voters to look at things this way…

Figuring Out the Actual Goal of a Policy

Last time, we talked about three main areas of a policy where things can go wrong: drafting a written policy to match the envisioned goal or mission of the policy (articulation), creating an administration or structure to carry out the policy (implementation), and making sure that people are actually following the policy (enforcement). These three areas are extremely complicated when everyone involved has a common view of what the policy is trying to achieve. When there’s no clear agreement on the intended goal of the policy, things get even more confusing. For an example of that kind of confusion, let’s look at a recent policy proposal in New York State to prohibit the use of food stamps to buy soda. To understand what’s really going on here, we’ll need to take a closer look at a couple of things: what the intended goal and policy of the food stamp program is, what the proposed policy is, and how the two interact.

Let’s start with food stamps. The United States food stamp program started in 1939. Although it currently functions as an anti-poverty program, it started as a subsidy for American farmers administered by the U.S. Department of Agriculture as a way to help American food producers by making it easier for consumers to buy their goods. Originally, consumers bought coupons that could be used for food and were issued additional coupons that could be used for “surplus” food – food that was being produced but not purchased because of the problems in the economy. Even now, changes to the food stamp program take place in congressional “Farm Bills” that primarily focus on agricultural issues.

The food stamp program is also one of the primary anti-poverty programs administered by the federal government. Over time, eligibility for the stamps has been narrowed to include only low-income individuals and families. Unlike some other anti-poverty programs, eligibility is based on more than just an individual’s or household’s income and includes a calculation for how much they are paying for housing costs to determine the amount of income considered available for purchasing food. (You can go through the pre-screening on the federal food stamp website if you want to estimate your eligibility – if you’re from outside the U.S., just pick a random state.)

Although a person is approved for a certain dollar amount of food stamps per month, the benefit is not given to them as cash. Instead, they get that dollar amount of “food stamps” on an electronic debit card that can be spent only on food — it can’t be used for rent, gas money, diapers, clothing, vitamins, medicine, toiletries, or any other non-food items. There are also restrictions on the food that can be bought with food stamps: no hot or pre-prepared food (like a deli sandwich) and no alcohol or cigarettes. These rules get somewhat complicated – pumpkins can be bought if they’re edible, but not if they’re a decorative gourd.

So, given that framework, we can now understand what New York state is proposing: a demonstration project for New York City that would “bar the use of food stamps to buy beverages that contain more sugar than substance — that is, beverages with low nutritional value that contain more than 10 calories per eight-ounce serving. The policy would not apply to milk, milk substitutes (like soy milk, rice milk or powdered milk) or fruit juices without added sugar.” And the stated goal of the policy: “bring[ing] us closer to stemming the wave of obesity and diabetes in New York.”

The question of how much and whether these drinks do or do not contribute to an increase in diabetes and obesity (obesity which may or may not be a health issue) is a whole other question – for the purposes of this analysis, let’s just pretend we live in a world where that connection has actually been proven. Even if we accept that very tenuous connection, a big problem with this proposed policy is both overbroad and underbroad. Policies that are overbroad change more things than they need to in order to reach their intended goal. This policy is overbroad because there are surely people who use food stamps to buy some of the prohibited drinks who are neither obese nor have diabetes – so the policy would be prohibit purchases that do not contribute to the harm we are trying to prevent. It is underbroad partly because of what’s excluded – the sugar in fruit juice or chocolate milk is just as sugary as the sugar in soda. But it’s also underbroad because there are surely people purchasing these drinks with their own money – earned, inherited, or otherwise gotten not through food stamps – to buy these drinks that will contribute to their obesity and/or diabetes.

If we were this convinced that these sugary drinks were the root cause of an obesity epidemic, there would be a lot more effective ways to target this policy – by banning the sale of those drinks in the state, to anyone, using any method of payment. Or selling them only to adults. But this isn’t what’s being proposed. Partly because the soda companies would create a huge stink in protest and partly because the population would complain that they have the right to spend their money how they like and would likely vote out any politician that made such a policy. Instead, this is a “demonstration project” that New York promises the “effects [of which] would be rigorously evaluated.” This is really an experiment to find out if limiting purchases of these drinks makes any difference at all, either to the amount of sodas sold or any eventual health outcomes. And it’s a pretty bad experiment, because even with the tight control we have over how poor people spend their money, they could still buy a Coke with their non-food stamp income.

So what’s the real goal of this proposed food stamp policy? To further restrict the purchasing power of people low-income enough to receive food stamps in order to find out if this idea they have has any effect at all on what they want to try to change: the health of the overall population. And this kind of implementation is not at all unusual – these half-baked policy ideas that don’t have a firm scientific underpinning for their presumed causal effect are often tested out on vulnerable populations that don’t have the political power to resist them. If this was implemented on the entire population of New York City or state, there would be a giant backlash. But the poor aren’t nearly as well organized or politically active, so it’s safe to practice on them, for the good of everyone’s overall “health.”

Further reading:

By 26 October, 2010.    news, policy, politics, poverty  ,  

In Case of Emergency, Break Glass: People With Disabilities and Disaster Preparedness

Last week, Hurricane Earl appeared to be bearing down on the Eastern Seaboard on the United States, and there were a number of stories about communities preparing for evacuation, or weathering out the storm. Watching the news unfold, I noted a pretty glaring absence in the coverage: Any discussion, at all, of people with disabilities. Ever since Hurricane Katrina, the US government has been aware that there are significant gaps in disaster preparedness planning for the disabled community. Several reports since then have suggested that, despite policy changes, most communities are still not ready to deal with the evacuation of their disabled residents.

What this boils down to is that people with disabilities get left behind in disasters. If they weather the disaster itself, they are left without any support networks, for as long as it takes to reestablish community services. For people dependent on electric medical devices, this can translate into death within hours or days as electricity services are cut and backup power sources dwindle away, one by one. For others, it means sitting for days without access to food, medications, and basic hygiene services.

‘Be prepared,’ they tell us. Establish an evacuation plan. Don’t plan on depending on family or public services. Stock up on at least a week’s worth of medication. Register with community organisations (ok, I guess, you can depend on some public services?). If you rely on electric medical devices and need services like dialysis, find locations where you can access electricity and the health services you need. Set up multiple failsafes, multiple friends who will check in on you.

And, you know, all this sounds great, in theory. But how does it work out in practice?

Let’s say that you have a degenerative neurological disease and you spend most of your time in bed. You cannot sit upright, walk, or stand. That means that, if an evacuation order comes through, you need transport that can accommodate you. That transport? Can cost thousands of dollars, one way. Assuming you can access it, which is not a guarantee, because transport services may not be running or may already be booked. Are you supposed to maintain a $30,000 USD adaptive van in the garage in case you need to evacuate at some point?

Let’s say you, like most people with disabilities, are living near, at, or below the poverty line. How are you going to stock up on a week’s worth of expensive medications and supplies? Or you, like many poor folks in urban areas in the US, regardless of disability status, do not have a car. You are dependent on public transport for evacuation. You can’t ‘just get out’ and you certainly don’t have a car packed with evacuation supplies. You are limited to what you can carry. Your friends don’t have cars either. How are you supposed to pack a 50 pound extra battery for your chair, again?

You may have limited friend networks, and many of your friends may be disabled as well. You all need help to evacuate in disasters. You can check in on each other, but none of you can help each other evacuate. What if you’re in a remote, rural area and the closest dialysis center is hundreds of miles away? What if there are no community organisations in your area or, you call to register with them and they say they can’t help, don’t take people like you, have no resources for people like you? What if you call around to emergency shelters and they aren’t accessible, don’t have backup generators for power? What if you can’t communicate with the people running evacuation services and emergency shelters?

There’s a long list of ‘what ifs’ that deconstruct the supposedly ‘easy’ process of planning ahead for a disaster. Every single disaster preparedness guide for people with disabilities I’ve looked up starts with ‘make a plan,’ but doesn’t really provide information on how to make that plan, what to do if it’s functionally impossible in your community to plan. How can people be expected to ‘just make a plan’ when they lack access to basic services even when there’s no impending disaster?

A common stigmatisation ploy used against people with disabilities is that we are ‘dependent’ on the government and rely on the government for everything. But, when it comes to survival, we are reminded in disasters that we actually cannot depend on the government. People with disabilities are told that there are no measures in place to assist them during evacuations, and they need to make their own arrangements. Functionally, that results in being left behind to ‘weather it out’ and hope that, when emergency responders finally start arriving, they can enact a rescue before it’s too late. It’s too expensive, evidently, to include us in community disaster planning.

We won’t even talk about what happens after the disaster, when people with disabilities have a harder time recovering than the general population. Just making it through a disaster at all is a feat, given the way the deck is stacked against us. The government is working on making disaster planning more inclusive, but it’s not working fast enough. It’s another reminder of the impact social attitudes has on policy; we are an afterthought, we are demanding ‘special treatment’ when we ask to be evacuated to safety with the rest of the population.

What kind of disaster planning is available in your community? If there is a disaster, what will happen to you?

Mental Health and the Gulf Oil Spill

We are still trying to get our heads around the massive and far-reaching effects of the massive oil spill along the Gulf Coast of the United States. It’s clearly too soon for anyone to even predict what all the effects are going to be, much less estimate the severity or significance of those effects. The spill will affect the environment, the local and national economy, employment, tourism, where people live, even seafood supplies for restaurants. It is also very clear that there will long-term, significant health effects from the spill and the toxic dispersants used by BP to address oil in the ocean.

Putting all of those effects aside, I want to focus on the mental health effects of the spill. Obviously, we are still very close in time to the three month period before July 15, 2010, when an estimated 3 to 5 million barrels of oil spilled into the Gulf of Mexico, so quantifying or understanding the mental health effects is difficult. An initial report from Louisiana State University found that nearly 60% of the 925 coastal residents they interviewed “said they were almost constantly worried by the oil spill.” Another recent study done by the Columbia University Mailman School of Public Health (pdf) gives us some preliminary data on the impact of the spill on the mental health of the coastal population, focusing specifically on the mental health of children. And it is, frankly, not very good news.

The survey was limited to people who live within 10 miles or a 30 minute drive from the coastline in Louisiana and Mississippi. Between 40% and 50% of people had had direct exposure to the oil spill, either by being involved in the cleanup, coming in direct contact with spilled oil or cleanup activities, or who had lost or damaged property as a result of the spill. Excluding children who had emotional or behavioral problems prior to the spill, about 20% of the children in the sample were experiencing mental health problems after the spill. The researches estimate that only about 15-20% of these mental health problems were associated with direct exposure to the spill and cleanup activities, meaning that the remaining 80-85% of mental health problems were among those without direct exposure. Having direct exposure made both adults and kids about twice as likely to report mental health symptoms.

It will be utterly unsurprising to most readers of FWD to learn that mental health problems were related to the race and income of households. Black families were significantly more likely to have mental health problems among both adults and children. Similarly, children in households with incomes less than $25,000 were nearly three times as likely to have mental health problems than children in households with income over $75,000.

The study suggests that these mental health concerns are substantially related to parental concern and uncertainty about remaining in the Gulf Coast area. Households that indicated the family may move away from the area were twice as likely to have a kid with mental health symptoms. As the study says, “the human impact of the oil spill in the Gulf Coast’s “social ecology,” that of its residents, communities, and social networks, may only be accelerated by such uncertainty.”

One woman interviewed by the study told the New York Times how the spill was contributing to mental health problems for her family:

Shannon Drury, a mother of four in Venice, La., said her husband, a commercial fisherman, had been working for BP but was owed six weeks’ pay. For a time after the spill, Ms. Drury was forced to find work as a houseboat cleaner, coming home exhausted at night. Ms. Drury’s 11-year-old daughter has grown more insecure, she said. Another child has developed a mysterious rash that Ms. Drury suspects is infected. Tensions over money, she said, reminded her of the warning from a visiting speaker from Alaska, who said the divorce rate there had skyrocketed after the Exxon Valdez disaster. “I realize what the woman was talking about now, because it puts different strains on your family from what you’ve been used to,” Ms. Drury said.

This kind of mounting pressure is similar to the National Institute of Mental Health’s understanding of how disasters like the oil spill contribute to mental health problems. As NIMH Dr. Farris Tuma explains:

One of the tragedies that we have seen over and over again after large scale disasters, is really a spiraling downward of people who were, maybe, managing to keep their lives together, to keep their emotions and behavioral problems under control. But with some additional stress and some additional disorganization in their community- really became quite disabled by their anxiety, depression, psychosis.

Despite the magnitude of this problem, the current resources available for these families and communities are very limited. One of the women interviewed in the study told the New York Times the only counseling resources to which she had access were a new program started by her church to respond to the spill. All of this suggests that BP should be held responsible for assisting these families with their mental health symptoms resulting from the spill. Unfortunately – and again, unsurprisingly – Kenneth Feinberg, the independent “claims czar” who will decide who gets compensated from BP’s compensation fund, said the fund was not likely to pay damages for mental illness and distress alleged to be caused by the spill.

“If you start compensating purely mental anguish without a physical injury — anxiety, stress — we’ll be getting millions of claims from people watching television,” Feinberg said. “You have to draw the line somewhere. I think it would be highly unlikely that we would compensate mental damage, alleged damage, without a signature physical injury as well.”

Please excuse me while I beat my head against the desk for about an hour or so. The implication that compensating people who have experienced the kind of mental anguish and uncertainty described above would open the door to an endless stream of claims from people who felt mildly upset when viewing television coverage of the spill is so condescending, so insulting, so wildly inappropriate that I’m having trouble responding coherently. This kind of attitude is offensive on a broad level – it minimizes the significant impact of mental health problems by equating them to obviously silly and spurious claims and implies that only physical health problems are “real” problems worth compensating.

But this attitude is even more harmful for Gulf Coast residents. This is compensation that people need in order to seek treatment and assistance with their mental health problems that they are otherwise extremely unlikely to be able to afford or obtain, so denying these claims means they’ll be left to cobble together whatever meager resources they can. As the study discusses, these are not isolated people who live in a vacuum, but will have real and lasting effects on the “social ecology” of the region, affecting entire communities and regions. And the people most likely to be left without any help are those who are already more vulnerable because of their race and their poverty. In short, administering the fund this way and denying these claims will not only perpetuate but actually exacerbate the underlying inequalities in the region, punishing poor children of color for the stigmatizing beliefs held by Mr. Feinberg.

This is especially galling as there have already been suicides linked directly to mental health problems stemming from the oil spill. William Kruse, who had two boats he expected to use for tourism over the summer, was forced to work cleanup for BP and became increasingly depressed and despondent, eventually killing himself in late June. It is almost certain that there have been more suicides that have not received national news coverage. It is unclear whether Mr. Feinberg would consider a gunshot wound to the head a physical injury sufficient to justify compensation of the underlying mental health problem.

Thankfully, the state governments are reaching out to BP for help in this area. Mississippi, Alabama, and Florida have all submitted requests to BP for money to provide mental health services to affected residents. Louisiana has requested $10 million specifically for emergency mental health services to respond to the crisis. (BP has not yet responded to these claims.) We can only hope that these states and the Congressional members who have oversight over the BP compensation fund will continue fighting so that the mental health needs of affected residents can be met.

Thanks to Karen Whyte for the suggestion for this post, as well as for many of the links and materials cited here.

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.

By 3 August, 2010.    policy, poverty, race   

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