Category Archives: class issues

The Community First Choice Option

So it looks like here in the United States, after what seems like a full century of arguing and revising and protesting and name calling, our legislature may actually pass a health care reform bill today. This is far from an unqualified victory – the bill is a very mixed bag from a number of viewpoints, and PWDs have both reasons to be happy and reasons to be upset. In other words, there’s not one “right” way to look at the bill from a disability rights perspective and people can still be committed to disability advocacy whether they love or hate this bill. (You’ll notice I cagily haven’t taken a position on the overall bill.)

There is one aspect of it that is very exciting, though, and has been the result of strong advocacy from ADAPT and the National Council on Independent Living: the Community First Choice Option. The CFC Option would give states the option to request federal funding to provide in-home assistance and support to PWDs. The goal of these programs is to facilitate PWDs staying in a community-based setting – living independently, with a partner, family, or other arrangement – rather than moving to a full-time care institution such as a nursing home.

PWDs would be able to access a variety of types of assistance, as ADAPT describes:

Services under this option would include services to assist individuals with activities of daily living (ADLs), instrumental activities of daily living (IADLs), and health-related tasks through hands-on assistance, supervision, or cueing. ADLs include eating, toileting, grooming, dressing, bathing, and transferring. IADLs include meal planning and preparation; managing finances; shopping for food, clothing, and other essential items; performing essential household chores; communicating by phone and other media; and traveling around and participating in the community. Health-related tasks are defined as those tasks that can be delegated or assigned by licensed health-care professionals under state law to be performed by an attendant. Services also include assistance in learning the skills necessary for the individual to accomplish these tasks him/herself; back-up systems; and voluntary training on selection and management of attendants. Certain expenditures would be excluded, including room and board; services provided under IDEA and the Rehabilitation Act; assistive technology devices and services; durable medical equipment; and home modifications.

There is a similar program, In-Home Supportive Services (IHSS) currently existing in California that is based primarily on state funds that has proved a win for both PWDs and for state budgets. The benefits for PWDs are clear – they are allowed the dignity and independence of a community-based setting rather than needing to move to an institution for support. It has also benefited the state, however, because the average yearly cost per IHSS consumer is $10,000, compared to the $60,000-80,000 it would cost to institutionalize that person. Since Medicaid, the state and federally funded health insurance program for low-income folks, would bear the bulk of the cost of institutionalization, IHSS provides a significant cost savings. These are programs that do the right and moral thing by allowing a PWD to remain in the community while saving the state money at the same time – a win-win. For yet another win, family members of the PWD can sometimes be paid to serve as a caregiver, increasing income to the household to ameliorate the poverty disproportionately experienced by PWDs and their families.

Here are a couple of stories from IHSS consumers about how the program affects their lives:

Jill has had back surgery and 3 knee surgeries and is unable to stand for more than 20 minutes at a time. Her 11-year-old daughter has ADHD and needs to be watched at all times. The combination of dealing with knee and back pain, migraines one to three times a week and caring for her daughter Courtney leaves Jill unable to take care of certain household needs such as cooking and cleaning her home. Without IHSS services Child Protective Services might have placed her daughter Courtney in foster care.

Christie Ritter: On October 1st, 2002, I was stopped at a traffic light. It was my day off from being a respiratory care therapist in a hospital. I worked neonatal and pediatric specialty. I was sitting at the light, waiting for it to turn green, heard some screeching tires. Next thing you know, I have a car coming through my driver’s side door. Broke my neck and my lights went out. So when I woke up, found out my neck was broken and I’m a quadriplegic.
Jahad:
Ritter has some movement in her arms and legs, but she can’t grip or hold things and she can’t hold herself up well enough to walk. Ritter fought for in-home care. And with therapy and assistance, she holds down a full time job and lives in her own home.

There are problems even with this portion of the bill – the availability of the optional federal funding has been delayed a year, and individual states can still opt not to administer the program. It is, however, a good and positive step in the right direction.

For Cereal, Stars and Stripes? Mocking “Paranoia” is Headline-Worthy?

OK, so I saw this one in my paper edition because I get it the night before (and technically a day late, since I am in the future!), but you can find it online too.

In the 16 March edition of Stars and Stripes writer Jeff Schogol wrote an article containing letters from people who sent letters to the Defense Department website. He calls the letters he said the DoD provided to him “the more bizarre feedback it gets” and notes that “[t]he authors’ names were withheld, but all spelling, grammar and paranoia are authentic“. (emphasis mine)

The article, titled “Airborne bears to catch bin Laden and other letters to the Pentagon” seems little more than a great way to laugh at people for myriad reasons. Let’s poke fun at their lack of intelligence! See how they can’t construct proper sentences? Those silly people without proper educations and who aren’t newspaper columnists or Pentagon officials! Ha ha! That’s so funny!

There were several letters published by Jeff Schogol in his article that I don’t feel comfortable publishing here, because I don’t feel that it is proper to display these letters that were meant to be private correspondence and won’t further his ableism. I don’t want to further hurt a person who might already be pained by finding hir something they never meant to have public spattered all over the internet and a military wide newspaper. They were not meant for this type of dissemination, and I think it was vile of whichever Pentagon employee thought it was appropriate to release them to a newspaper. I also don’t feel that it is in good taste to print a letter in a newspaper with the intention of laughing at the “crazy” person, as it is clear here that is what is meant. We are supposed to have a good chuckle at the supposed ludicrous ideas that are put forth by the letter writers. Schogol obviously feels that it is OK to call people paranoid and make light of mental illness and disability. Har har.

I am going to invite you to write to Jeff Schogol at Stars and Stripes and let him know that you don’t think it was a great idea to run this article, or that it was in good taste to reprint these letters. Or if you feel inspired, maybe you would like to use the same venue as the original letter writers who thought that they were writing private correspondence to the DoD, and let them know just how unprofessional it was to release those emails to a newspaper for a chuckle.

Yeah, what *about* your free speech “rights”?

Here at FWD, it is not unusual for us to get quite a few comments in mod that question, take issue with, or outright berate our fairly rigorous comments policy and iterations thereof in varying degrees. Many of these comments are some variation of “But what about my right to express my opinion?” or “But…free speech!”

Unsurprisingly, many of the comments that try to take us to task for “prohibiting” free speech are from non-regular (and, in some cases, first-time) commenters. I try to give people — on the internet and off — the benefit of the doubt. Perhaps these folks who try to direct the conversation to their supposed right to say whatever they want “because of the First Amendment” are just unaware that many social justice-focused blogs — especially those written by people who are members of various marginalized and/or traditionally underrepresented groups — have commenting policies, usually for very specific reasons. Perhaps they think that the First Amendment entitles them to say whatever they want without also getting called on it. Perhaps they think that bigoted or hateful speech is okay, since it’s “just” on the internet and therefore cannot be taken seriously or do any “real” damage. Perhaps they think that someone needs to pay Devil’s advocate when talking to (or about) disabled feminists and other people who do not represent (or are not represented by) the majority, and they are reasonable/intellectual enough to do the job!

Here’s the thing: This website is not  run by U.S. government or employees of the U.S. government who are representing their place of work. This is a privately-owned website.  Its contributors, commenters and readers are not all from or living in the U.S. The First Amendment applies, by and large, to the United States government’s attempts to contain and/or regulate things that people say or opinions that they want to express in myriad formats. In other words, “freedom of expression” does not automatically mean that you can bust out with some bigoted crap, and then whine or call foul when the blogger or author chooses not to publish or engage with said bigoted crap, or when someone else (perhaps another commenter) calls you on this crap. Free speech is not equivalent to some sort of magical blogular free-for-all. The “free speech!!11” defense (if you want to call it that) also has the unintentional side effect of privileging US-centric notions of being able to say certain things, apparently without consequence — something that some other countries do not appear to take so lightly (see, for example, British libel laws).

From a more anecdata-ish perspective, I have noticed that many of the people, at least on the internet, who cry “free speech!!1” in defense of their supposed right to say “un-PC” things/play Devil’s advocate/et cetera are people with various kinds of privilege (white, heterosexual, abled, cis, class–to name just a few) who simply do not seem to want to give up — or, sadly even so much as critically examine — one or more of the types of unearned privilege that they have. Put simply, they just want to shut people (who oftentimes aren’t just like them for one reason or another) up using the trump card of free speech. It seems to me that the thought process might go a little something like this: Who cares if there’s a person (or people) on the other side of that computer screen? I have the right to steamroll over their lived experiences, or tell them how wrong they are ’cause “normal” people don’t feel this way, or tell them to suck it up/grow a thicker skin, or that they’re just making things up so they can be angry about stuff, or looking for stuff to get mad about, or seeing things that “aren’t there” (because if I can’t see it, it must not be there!) or use any number of derailing tactics that are not pertinent to the actual discussion at hand, or direct the discussion to my experiences and feelings as a privileged/non-marginalized person and thus re-center my own (and the majority’s) importance in a discussion that is not even about me, because it’s within my FREE SPEECH!!1 rights to do all of this and more!

Boy, that must be really fun, getting to justify making things all about you and your “rights” all of the time in spaces that are run by people who are — gasp! — different than you, and who may not have much of a safe ‘net space anyway, since the entire web is full of people who probably share at least some of your oh-so-contrarian outlook on things (not to mention some of your privilege[s]).

The free-speechers also tend to miss one important thing: If they want to spew uninformed, privilege-encrusted opinions using this excuse, and their comment gets published publicly, it is perfectly within reason for bloggers, writers and other commenters to use their free speech “rights” to respond right back.

We Need to Consider More than Universities

There’s a lot of really good stuff out in the blogoamorphia[1. Sphere, pshyeah.] about sexual assault on uni campuses. The focus is specifically on USian colleges and universities though Rape Culture exists pretty much everywhere with only slight variation. It’s worth reading, if you’re up to reading about sexual assault at all. (I’m not always.)

Predators are good at target selection. All of them. We see this in the uni rapists who repeatedly assault vulnerable young people. And the analysis of these assaults and assailants is valuable. I hope the attention being focused on this issue leads to real change in how sexual assault is treated by colleges and universities because the status quo is disgusting. Victims are made to undergo ‘mediation’ with their assailants in the name of ‘fairness;’ people known to administrations to be serial rapists face only the most cursory of punishments while their victims often leave, faced with an environment that could hardly be more obviously hostile; the government agencies tasked with reducing rape on uni campuses in the US have hardly bothered to appear to do anything at all.

But I’m a little uncomfortable that the focus is on the most privileged, most visible, most likely to be photogenic segment of sexual assault victims. Not that these people don’t need or deserve attention–they do. (And really I’d like there to be much more awareness that the things cis men do to each other are not HILARIOUS PRANKS but are sexual assault and should be treated as such. Cis men, you have a task: Even if you can’t be arsed to end sexual assault of other folk by cis men, you may wish to end assaults on yourselves by cis men. Hop to it.) I just worry that the pattern we see so often where the most privileged people are centered and marginalized people are pushed to the edges will repeat itself. That sexual assault victims whose circumstances differ will have a more difficult time being heard. That there will be a sense of “Well fuck we already had to care about these college [het cis probably currently non-disabled largely white largely middle-to-upper-class] girls getting raped and now you want us to care about you? Sorry, we’re all out of giving a shit.”

Because predators aren’t just at universities and colleges. All those uni students will leave school eventually. Not all predators even go to uni. They will all be looking for targets. Not only will they choose targets that are vulnerable and have a low risk of incurring negative consequences, they will seek out environments where there are large concentrations of their preferred targets. They will search for jobs where they will be in positions of authority over those targets. Predators that prefer children try to get jobs in schools or in religious settings. Predators that prefer disabled people, mentally ill people, or elderly people look for work in hospitals and supportive care facilities. Predators that prefer sex workers become pimps or police.

Part of the problem is going to be that people will be able to relate to the uni predators better. University-age women are often attractive people by accepted standards of beauty. Raping a pretty young cis woman is understandable–the rapist was attracted to her and wanted to fuck her and wanted to cut through all the preliminary bullshit and get right to the fucking. It’s harder for people to imagine wanting to fuck children or older people or disabled people or crazy people or fat people. Who’d find that attractive? (Who would rape you?)

It isn’t about sexual attraction. A predator’s preferred type of victim may not have anything to do with the sort of people xe finds attractive in non-predatory relationships (assuming xe has any) and may be of a different gender from xer orientation. Cis men who identify as straight and prey on children who read as male by ciscentric standards aren’t necessarily lying about their orientation, even to themselves. Predation isn’t about sex despite there being sexual gratification involved. (Though the predator xerself likely doesn’t understand this.) It’s about the predator making xerself feel powerful by stripping xer victims of power. It’s about the predator boosting xer self-confidence by humiliating xer victims. It’s about the predator feeling safer by making someone else afraid. It’s about hate. It’s about entitlement. It’s about controlling the behavior of others. And like all kinds of abuse, it’s about making the victims responsible for the emotions and actions of the predator.

Sex is just the mode of abuse. The choice of victim is about getting away with it.

So how do we not lose track of this? How can we address the issue of rape on university campuses without centering that experience of rape and marginalizing others? How can mainstream anti-rape activists not treat our experiences of rape as Other, as exotic, as something incomprehensible? Because that path leads to paternalism and patronization. It’s not good for us no matter how well-intentioned. It’s the sort of thing that leads to disabled people with ovaries being sterilized without their consent or knowledge at the behest of guardians who simply assume, with ample justification, that they will be raped in institutional care facilities. Since there’s nothing they can do about that (as we all know rape is a force of nature and not an act performed by humans capable of changing their behavior[2. MY SARCASTIC VOICE LET ME SHOW IT YOU.]) they can at least protect those people with ovaries from some of the potential things that could result from said rape. That one of the things they are protecting people with ovaries from is the possibility of bearing a child and being a good and loving parent–which happens even when a child is conceived by an act of rape–doesn’t occur to them. They know best, and they can’t imagine this person they’re placing in an institutional care facility being a good parent.

Cross-posted from my tumblr blog, Rabbit Lord of the Undead.

Judge Orders New York to Move Mentally Ill Out of Adult Homes

From the New York Times:

New York State must begin moving thousands of people with mental illness into their own apartments or small homes and out of large, institutional adult homes that keep them segregated from society, a federal judge ordered on Monday. The decision, by Judge Nicholas G. Garaufis of Federal District Court in Brooklyn, followed his ruling in September that the conditions at more than two dozen privately run adult homes in New York City violated the Americans With Disabilities Act by leaving approximately 4,300 mentally ill residents isolated in warehouselike conditions.

The remedial plan offered by Judge Garaufis, drawn from a proposal presented by advocates for the mentally ill that was backed by the Justice Department, calls on New York to develop at least 1,500 units of so-called supported housing a year for the next three years in New York City. That would give nearly all residents the opportunity to move out of adult homes.

The Americans with Disabilities Act gives PWDs the right to live in the least restrictive housing possible – in this case, moving from adult homes into independent supportive living units. This is a great development for those previously forced to live in the abusive conditions of the group homes.

This lawsuit was filed after a series of articles in the NY Times about the horrific and abusive conditions present in group homes for adults with mental disabilities. It is unclear whether these changes would have taken place had the newspaper not devoted the time and resources to their year-long investigation of these conditions and problems.

Kettleman City, California: Low Income, Cleft Palates, and “Nothing Unusual”

It’s a small news story which hasn’t been well reported, and I might have missed it except that I happened to stumble upon it in 2009 and then I started following it. Starting in 2007, 6 babies out of 20 born in an 18 month period in Kettleman City, California were born with cleft lips or cleft palates. Some environmental activists started to cry foul, pointing to a hazardous waste facility near Kettleman City as a possible source of contamination which might be linked with the seemingly high rate of cleft lip and palate.

Cleft lip and/or palate occur in about one in every 700 births. Six out of 20 babies sounds unusual, right? Wrong, according to the California Department of Public Health, which says: “They’re all different and they suggest, or it doesn’t really suggest that they have a common cause. Because in general, we think each kind of birth defect has a different set of causes together that may be responsible. (source)”

This may well be true. Sometimes clusters do happen randomly and there are no causes. And it can be difficult to pin down all of the potential causes and environmental factors. But when you have a town with a hazardous waste facility as a major employer and unusual things start happening, it seems like there might be a correlation which is worth investigating. Even though the town is small. Even though the hazardous waste facility has a lot of political clout.

And do environmental exposures necessarily cause identical changes in fetal development? If being “all different” is an argument to rule out an environmental contaminant, why is it that babies born to women who took thalidomide during pregnancy were also “all different”? Certainly, they shared commonalities, but they were also very distinct from each other; taking thalidomide during pregnancy didn’t guarantee only one outcome. Seeing cleft lips and/or palates in 6/20 babies born in an 18 month period would seem to suggest that there is a common thread linking those mothers and that there is a chance that a cluster phenomenon is occurring.

The thing about Kettleman City is that it’s troubling, demographically. Almost 93% of the population identifies as Hispanic or Latino. Roughly 44% of the population lives below the poverty line. There are some serious income disparities; there’s a $16,619 median income for men versus a $10,179 median income for women. It’s a poor, primarily Spanish speaking community.

And that makes alarm bells ring in my head, because if there’s one thing California is very, very good at, it’s ignoring the needs and concerns of low income Californians. Even if the cleft lips and palates aren’t being caused by the Waste Management facility, I think that they are clearly a cause for concern and that more investigation might be a good idea. If it’s not the Waste Management facility, there might be other environmental factors going on. If this kind of thing was happening in an area like Marin, which is predominantly white, English speaking, and wealthy, there would be an uproar accompanied with demands to find out what is going on, and why.

Of course, Marin would also never house a hazardous waste facility, because there are numerous low income communities in California upon which such facilities can be foisted. In fact, some communities will welcome the extra income and the presence of a large employer who does things like donating to the schools. Low income communities in California literally compete for toxic waste from wealthy California communities.

As abby recently pointed out, “poverty has the greatest negative impact on health.” In her post, she discussed the increased risk of environmental exposure to harmful substances for people living in poverty, and that’s really highlighted across the United States, not just in California. The dirty but necessary things we have in this country, like industrial facilities, hazardous waste dumps, manufacturing facilities, and so forth, are predominantly located in poor communities.

In the Bay Area, for example, the refineries are in Richmond, not Berkeley or San Francisco or Marin, all wealthier communities. The manufacturing facilities in Oakland happen to be in Oakland’s poorest communities, not up in the Oakland Hills, where wealthy residents live. Set up an epidemiology map and overlay it on a map of communities coded by income and the way they match up is nothing short of eerie. If you are poor in the United States, you are more likely to be living close to a source of environmental toxins because it is all you can afford.

I lived on top of a Superfund Site in the Bay Area, and now I live a block away from a severely contaminated former industrial site. I wipe dioxin-laden dust off my bookshelves every day because it blows and blusters in through every crack in my house. I didn’t live in either of these sites by choice, I live in them because it is what I can afford. If the choice is between living on top of ground contaminated with dioxins, PCBs, lead, and radioactive materials and living nowhere at all…what would you choose?

And when people in these communities start to get sick, when clusters do start appearing, it is ignored. Or people are told that they knew about the danger (not true) and that they could have avoided it (by what, moving? Where?) and that the community is responsible for cleaning it up (with what money?) and sending the toxic materials somewhere else (another, poorer community, perhaps?). My neighboring town of Willits, heavily contaminated with chromium by Remco, fought for years to address the issue until the cause was taken up by Erin Brokavitch.

For every Erin Brokavitch in the world, there are 100 other towns which need help. Like Sierra Vista, Arizona, where there’s a leukemia cluster baffling and infuriating local residents while government representatives insist that there are no environmental causes. What’s happening in Kettleman City is repeated at varying degrees of scale all over the United States and it’s rarely reported or discussed.

Shame and Blame with African-Americans and Mental Health: Let the Circle Be Unbroken

Recently, U.S. Surgeon General Dr. Regina Benjamin kicked off a national campaign to tackle mental health in the African-American community. Benjamin explained why a focus on African-Americans is needed: “Mental health problems are particularly widespread in the African-American community. In 2004, nearly 12 percent of African Americans ages 18-25 reported serious psychological distress in the past year. Overall, only one-third of Americans with a mental illness or a mental health problem receive care and the percentage of African Americans receiving services (nearly 7 percent) is half that of non-Hispanic whites.”

Programs focusing on addressing underrepresentation of minority groups in mental health care tend to focus on outreach to and education of the underrepresented group (while this post focuses on historical and structural barriers to African-American participation in the mental health system, these larger concepts are likely applicable to other racial and cultural minorities throughout the world.). The theory seems to be that if individuals knew that they might be experiencing mental health systems and understood how the mental health system could treat and benefit them, they’d start accessing it in droves. This kind of outreach and education is clearly an important part of increasing minority representation in mental health care, but the exclusive focus implies that the primary barriers are the attitudes of individuals who would change their minds if they just had more information. This ignores a lot of problems and lets a lot of bad actors off the hook for institutional barriers and exclusions. In the particular instance of African-American engagement in the mental health system, it is these long-standing oppressions and exclusions which are perhaps most to blame.

A primary issue is that African-Americans are more likely to be subject to a number of forces of oppression and discrimination which can increase trauma and vulnerability to mental health disorders. “Owing to a long history of oppression and the cumulative impact of economic hardship, African Americans are significantly overrepresented in the most vulnerable segments of the population. More African Americans than whites or members of other racial and ethnic minority groups are homeless, incarcerated, or are children in foster care or otherwise supervised by the child welfare system. Proportionally, 3.5 times as many African Americans as white Americans are homeless. African Americans are especially likely to be exposed to violence-related trauma, as were the large number of African American soldiers assigned to war zones in Vietnam. Exposure to trauma leads to increased vulnerability to mental disorders.”

To me, that does not suggest that the primary solution is increasing African-American representation in mental health treatment – it suggests that a primary solution would be to address the structural inequalities that are making African-Americans “significantly overrepresented in the most vulnerable segments of the population.” Maybe a program that focuses on homelessness in the African-American population. Maybe addressing the sentencing disparities for crimes involving cocaine and crack cocaine, and how that contributes to disproportionate and longer incarceration of African-Americans. Or how felony disenfranchisement prevents a staggering number of African-Americans (13% of black adult males!) from participating in our democratic political system. Without addressing these ongoing problems, a disproportionate number of African-Americans will continue to experience trauma and increased vulnerability to mental disorders.

A second and key issue is the long history of how the psychiatric profession has treated African-Americans in the United States. Diagnoses and treatments for African-Americans have long been rooted in the structural racism of slavery, with early diagnoses of “Negritude” and “Drapetomia” for slaves who fled their masters and recommended treatment of whipping as therapeutic intervention. In 1895, a Georgia psychiatrist popularized the idea that “structured lives led by slaves served as protective factors against insanity” and that slavery protected African-Americans from freedom that would literally make them insane. In the late 1800s and early 1900s, there were separate “colored” institutions for African-Americans, who received little if any treatment services and were subject to horrific tortures and sexual assaults.

A glance at the current mental health system makes it clear those historical problems have not been eradicated. African-Americans are much more likely to be diagnosed with schizophrenia than with affective (mood) disorders, even when displaying the exact symptoms of a white patient diagnosed with affective disorder. This is true even when the diagnosing clinicians included African-Americans well trained about the bias towards schizophrenia diagnoses. Studies suggest this is because clinicians apply entirely separate decision models when diagnosing African-American patients, likely drawing on stereotypes of paranoia and violence that aren’t actually associated either with African-Americans or people with schizophrenia.

There are also significant knowledge gaps in how psychoactive medications affect African-Americans. There is almost no research on ensuring adequate racial representation in psychopharmalogical research, nor on how to ensure that participating patients from various cultural and racial groups give informed consent. This lack of knowledge is affecting the effectiveness of treatment, as existing research shows that “a greater percentage of African Americans than whites metabolize some antidepressants and antipsychotic medications slowly and might be more sensitive than whites,” and can lead to faster responses and more severe side effects when African-Americans are treated with doses commonly used for whites. Despite this, clinicians in psychiatric emergency services commonly administer “both more and higher doses of oral and injectable antipsychotic medications to African Americans than to whites.”

To me, all of this suggests that the psychiatric profession hasn’t really figured out how to provide psychiatric treatment and care of the African-American population with the African-American individual’s best interests in mind. History speaks to using psychiatry to control, torture, sedate, and oppress African-Americans, even creating fictionalized diagnoses to help support the structures of slavery. Add to all of this the multiple barriers preventing access to mental health care even for those who enthusiastically wish to access it – lack of parity for mental health care, lack of health care coverage at all, societal sigma around mental health – and instead of wondering why there’s underrepresentation of African-Americans in the mental health system, I start wondering why there’s as many as there are.

Clearly, a solution focused only on outreach and education to individual African-Americans is doomed to be unsuccessful, because it overlooks the underlying structural issues making African-Americans particularly vulnerable to mental health problems and the historical reality of their exploitation by the mental health system. Even more troubling, though, is that when the access problem is framed as an issue of education to an individual, it allows the blame to be placed squarely on that individual – even if these other, more serious, structural barriers are ignored. That kind of blame is just another addition to the complex system of forces making African-Americans more vulnerable to mental disorders to begin with.

Newsflash: Poverty is Bad for Your Health

A recent study from Columbia University found that of all the health factors they measured, poverty had the greatest negative impact on health. The other factors they looked at included smoking, obesity, lack of health insurance, and binge drinking, all of which had a less significant impact on health outcomes than living in poverty. Poverty, defined as living below 200% of the United Stated Federal Poverty Level, was determined to take away 8.2 years of health, meaning poor people have 8.2 fewer years in which they are healthy than someone above 200% of the FPL (This is a standard measure of health burden, used by the WHO.) We should also be explicit that when we talk about poverty we talk about race – over 50% of black and Latino young adults live in poverty, compared to less than 30% of white young adults.

To which I respond, well, YES, clearly. But you would never know these things from the way we talk about health. Think about how many public health programs are focused directly on the spectre of obesity. There’s PE programs and school activity policies, public education campaigns (usually involving TV ads) to tell people to spend less time watching TV, there’s calorie labeling requirements and scolding people to go to their farmer’s markets and taxes on soda or foods with trans fat. Some of those policies may have worth, but their goal of eliminating TEH FAT ZOMG and thereby solving the health crisis is clearly misdirected. Even worse are the articles and attitudes engendered by this focus on obesity as a health issue, like this recent article in the LA Times, because they imply that a systemic issue like the health care problem can be resolved by individuals changing their lifestyles, rather than by systemic change on a much broader level.

The effect of poverty on health has been clearly documented. People who live in poverty are more likely to have asthma and diabetes. They’re way more likely to be exposed to parasites like toxocariasis, cysticercosis, and toxoplasmosis, which can have significant physical and neurological effects including seizures and developmental delays. They’re five times more likely to be exposed to lead paint as children. They’re twice as likely to have untreated cavities, which can lead to heart disease or infection and even death. This all means that from the beginning, even from birth, people living in poverty are more likely to develop or acquire a disability or chronic health condition.

It would seem, then, that addressing poverty in order to prevent those negative health outcomes would be a public health priority. But it really isn’t – poverty programs are rarely described as health programs. When a politician starts talking about welfare, they’re talking about cash payments to help parents raise their kids, to preserve and support families. They don’t talk about how assisting a family out of poverty will make that whole family healthier, and less in need of health care. And addressing the negative health effects of poverty – safely removing all the lead paint, preventing slum housing conditions like cockroach infestations and mold that contribute to asthma, get them some access to dental care – would have an enormously beneficial effect on hundreds of thousands of individuals and on the health care system as a whole. However, addressing the systemic effects of poverty isn’t nearly as easy as shaming “the fatties” and slapping some calorie numbers on menus.

This is especially galling because there is so much overlap between the community of PWDs and people in poverty. A recent study found that almost half of working-age adults who experience poverty for at least a 12-month period have one or more disabilities. People with disabilities account for a larger share of those experiencing poverty than people in all other minority, ethnic and racial groups combined and are even a larger group than single parents. Families with more than one member with a disability are even more likely to be living in poverty. There are two things going on here. First, people who live in poverty are more likely to be or become PWDs, partly because of the health factors discussed above. But also,  PWDs are more likely to live in poverty, partly because of the cost of health care.

All of this suggests that our conversations about health care need to include ideas about addressing poverty and that our work on poverty issues has special effects on health and disability. Hurrah for intersectionality!

What is the Real Goal of Fraud Investigations?

California is in the midst of a major budget crisis. The past year has seen immense and drastic cuts to social service budgets throughout the state, including elimination of all state funding ($16 million) to domestic violence shelters (which was later partially restored by legislative action) and near-total decimation of funds for AIDS testing and prevention programs to save $52 million. Even with those catastrophic cuts, the state is still in massive financial difficulty: “The state has a $6.6 billion shortfall in the current fiscal year ending June 30 and is looking at a $12.3 billion hole for the new budget year. There is $1 million in reserve.”

This means that any dollar currently being spent has been extensively reviewed and evaluated and a very conscious decision has been made to prioritize spending in that area. For example, the state is still willing to spend money for California counties to investigate potential fraud in the In-Home Supportive Services (IHSS) program. IHSS is an essential program for many of California’s low-income elderly people and people with disabilities. Through the program, individuals are allotted a certain number of hours of assistance with personal services including bathing and grooming, home services such as cleaning, cooking, and errands including buying groceries and picking up prescriptions. The theory of the program is that assisting people this way allows them to continue living independently in their communities rather than in a long-term care facility, which not only preserves independence and dignity for program recipients, but also is a huge cost-savings measure for the state. If program recipients were to move to long-term care facilities, their costs would almost certainly be paid for by the state’s Medicaid program. And look at the cost differential: “The average cost of a skilled nursing facility is $55,000 a year. The average cost of in-home services in California is $10,000.”

Despite the cost savings realized by this program (I’m beyond the point where I think a state will prioritize and fund a program simply because it’s something that PWDs need to maintain independence and dignity), there have been massive cuts to the benefits portions of IHSS. The hourly wage paid to the home health providers has steadily declined and is now at $8.60 an hour. Needless to say, these extremely low wages make it nearly impossible for a PWD with IHSS benefits to find a home care provider with any kind of training or experience. There have also been steady erosions to the group of individuals who will be eligible for IHSS, with criteria requiring a higher and higher level of disability or functional impairment in order to qualify for the program.

The only area of program funding that has increased is fraud detection, with a grant of $26.5 million to counties to engage in fraud detection. That’s the equivalent of approximately 3 million service hours at the current rate of pay. There are also new requirements in the program that must be met by both recipients and providers in order to receive services: all providers must go through a criminal background check process, including fingerprinting; all program applicants and recipients must be fingerprinted and must place a fingerprint signature on each timesheet submitted for payment. It also requires counties to conduct unannounced home visits.

In the abstract, some of this seems to make sense. We don’t want health providers with criminal backgrounds coming into the homes of vulnerable people and exploiting or harming them. Except that the majority of providers are actually family members or immediate relatives of the PWD and the fingerprints can take up to 9-12 months to be cleared by the state, causing huge delays for PWDs who need vital services and delays in bringing often essential income to low-income families. (Not to mention how low-income people of color are likely disproportionately targeted by law enforcement and subject to criminal penalties.) It also seems reasonable to ensure that scarce service dollars are actually going to people who need and deserve them, rather than people receiving them fraudulently. But there has been a lot of research on IHSS fraud in the past, and it simply does not seem to be very prevalent: an audit released last year (pdf link) found a fraud rate of only 1% in the program. A recent program in Sacramento turned up similarly low levels of program fraud: “The Sacramento County District Attorney, who received more than $3 million from the state for anti-fraud efforts, reported last week that after four months her office had uncovered a total of 19 cases of fraud out of more than 42,000 homecare clients in the County.” That’s a rate of 0.04%. And if we estimate that each of those 19 cases fradulently took $10,000 a year from the state, that $190,000 in fraudulent benefits is dwarfed by the $3 million spent to identify that fraud.

So – these changes and programs are not about protecting recipients. They’re not about preventing widespread rampant fraud. What are they about? Some testimony at a recent legislative hearing sheds some light:

Nancy Jo Riley of San Diego testified that she and her client were “randomly selected” for a fraud investigation last October as part of a new “anti-fraud” initiative by the state. According to Ms. Riley, the agent from the Department of Health Care Services (DCHS) first threatened in a phone call to cut off all IHSS unless she and her client met with him immediately. At the subsequent meeting, the investigator asked her and her client a long series of “humiliating” questions. He then said he could not understand why a person with a severe disability like his should be subject to a fraud investigation in the first place.  He also said that her client, whose hands are frozen in a fist-like position because of his disability, would “probably” be exempted from new fingerprint requirements for homecare consumers.

These rules are an effort to make it harder for people to get services or to continue receiving services. They are an effort to erect barriers to service so substantial that PWDs cannot surmount them. They designed to humiliate and shame recipients for their disability status, to force them to prove themselves, their disabilities, and their functional impairments over and over again. They don’t even make sense from a cost perspective, as they spend far more in detection than is saved by the fraud they ostensibly prevent. They’re not targeting people who are fraudulently receiving services. They are targeting the very people the program is supposed to help.

The New York Times Tells You How To Eat

Every now and then, I take a gander at the New York Times “Health” section, usually with the goal of riling myself up so that I can rant about something here at FWD. There are a lot of things to get riled up about. Today, for me, it’s the conflation of size and health, and the attitudes about food, cooking, and eating which I see in the “Health” section.

The section called “Recipes For Health” is headed:

The easiest and most pleasurable way to eat well is to cook. Recipes for Health offers recipes with an eye towards empowering you to cook healthy meals every day. Produce, seasonal and locally grown when possible, and a well-stocked pantry are the linchpins of a good diet, and accordingly, each week’s recipes will revolve around a particular type of produce or a pantry item. This is food that is vibrant and light, full of nutrients but by no means ascetic, fun to cook and a pleasure to eat.

I think that there are some fascinating assumptions embedded in here. Many of these assumptions reflect widely held social attitudes about food: There’s a “right” way to cook, there’s a “right” way to eat. You’re a good person if you subscribe to these ideals and follow them, and you’re a bad person if you don’t. In the “Health” section that’s taken one step further: You’re an unhealthy person if you don’t follow the dietary recommendations set out by someone else.

So, here’s the thing about cooking and disability. All of the things discussed as “linchpins of a good diet” get a lot more complicated when you have a disability. Setting aside the issue of allergies, let’s talk about the fact that some people with disabilities are extremely sensitive to flavors, textures, and smells. Some people with disabilities can’t do things like standing over a hot stove, lifting heavy pots, or going to a quaint local farmers’ market to pick up some of that fresh, local produce. Some people with disabilities actually have a really hard time coming up with things that they can eat, for a variety of reasons. And some people with disabilities face barriers to cooking.

What are some barriers to cooking? Well, what about the fact that many people with disabilities are of lower income and social status? Don’t you think that makes a difference when you’re considering what you can and cannot eat? It’s hard to get “seasonal and locally grown” produce when you live in a neighborhood which doesn’t really have stores with produce, when going to a different grocery store or a farmers’ market is not an option for you (too far away for you to have time, inaccessible, no safe transit). When CSAs won’t deliver to your neighborhood, how are you going to get produce?

What about the fact that food is expensive, and that some of the things touted in the “recipes for health” section are expensive or hard to obtain? A “well stocked pantry” really is not an option when you are living paycheque to paycheque (or benefits cheque to benefits cheque) and therefore cannot stock up on things. It’s easy to say “well, buy in bulk, it’s cheaper,” except that the initial outlay of cash for bulk foods might not be affordable for someone on a limited income; even though it’s more expensive to buy, say, boxed macaroni and cheese in the long term, it’s sold in a format which includes small, inexpensive packages which people can afford when they only have $15 to spend on groceries for the week.

And, of course, there’s the issue that getting into the kitchen isn’t as easy for some folks with disabilities. Some may live in settings where getting into the kitchen can’t happen because there is no kitchen, and people with a wide range of disabilities may have trouble doing things like standing in the kitchen for an hour to prepare a meal, controlling a knife to chop all that fresh produce, dealing with sensory input like smells while cooking, and so forth. I used to be one of those people who lectured about how “cooking is easy” and “it only takes a bit, it’s really no work at all” and how “you just have to commit” and then I woke up and smelled the beurre blanc.

“Cook healthy meals every day.” It’s an imperative. You must or you’re an unhealthy failure. And you must cook meals which are “vibrant and light.” Don’t cook what you want to eat, now. You need to cook food which is full of nutrients. (All food is full of nutrients.) In this case, “unhealthy” implies “fat,” and that’s an undertone in a lot of lecturing about what/how to eat, but there’s also some disability policing going on here too, some implications about how to live life “right.”

Food policing is an ongoing problem that I’ve been writing about for years, ever since I first started getting interested in the foodie movement and then just as quickly became totally disillusioned. When a prominent food blogger bragged about spending hundreds of dollars on food every week, I checked out of the movement. Because, you know, it’s not possible for me to spend $400 on food every week. I can’t actually be in the kitchen four hours a day. And the same holds true for many people, disabled or not, but being told what/how to eat carries extra baggage for disabled folks because we spend our entire lives being told what to do. “If only you did this, you wouldn’t be so disabled.”

Here’s what I think about food: “Eat what you love, love what you eat.” Our Ouyang Dan said that, and those are some words to live by. You don’t need the New York Times to tell you what to eat; you already know what to eat. The Times should stick to a recipe section, rather than preaching about what people need to/should eat.