Category Archives: politics

Vulnerability Indexes, Homelessness, and Disability

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Catch-22 Policies: Medi-Cal and Transplants

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So what am I asking you to do?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Paying For The Recession: The AIDS Drug Assistance Program

Despite the attempts at sunny forecasts being made by commentators, it’s pretty clear that we are in a recession, that we have not hit bottom, and that things are not going to get better soon. In the United States, all of the indicators are pointing firmly toward ‘shit is bad, folks.’ The unemployment rate[1. Notoriously unreliable because it does not include people who have stopped looking for work.] is high, housing starts are low, housing sales are soft, and I’m sure pretty much all of our readers in the US can point to economic indicators in their own communities; empty businesses, cuts to local services, and so forth. Outside of the US, things aren’t looking too rosy either.

The thing about recessions is that they tend to disproportionately impact the people who are least equipped to deal with them. People living in poverty and people who are vulnerable to poverty are the most likely to suffer and the government kicks those people while they are down by cutting social services rampantly. These ‘austerity measures’ are touted as a necessity, which I personally find hard to swallow when we are handing out billions of dollars to corporations, but personal repugnance aside, they just plain don’t make sense. Cutting social services results in more costs later. If the issue is expenses, the most cost effective thing to do is to actually boost funding to social services right now.

In recent days, the United States media has been exploding with stories on the AIDS Drug Assistance Program (ADAP). On average, it costs around $12,000 every year for a patient to take AIDS medications, and remember, that’s an average. Some patients pay far more, and this is just medications, setting aside the costs of regular doctor visits, lab testing, and other services needed by people with HIV/AIDS. Founded in 1987, ADAP serves around 170,000 people every year who need HIV/AIDS medications and can’t afford them.

This program is often touted as successful because it has a lot of enrollees, although there are undoubtedly people who need assistance and can’t get it because they don’t qualify. As always, when I look at programs like ADAP, I am glad that they exist because I think it’s better to provide some support than nothing at all, but I also find them highly inefficient; the approach to health care access in the United States really sucks, quite frankly, and one of the reasons it sucks is that it’s very wasteful and poorly organised. If the United States would see fit to implement any sort of nationalised health care, we could spend less money and provide care for all instead of having a bunch of stopgap programs like ADAP. It should be possible to provide access to everyone in this country who needs it, and the fact that this hasn’t been made a priority reflects very poorly on us.

But I digress.

As of today, 11 states have implemented waiting lists for their ADAP programs, because they have no choice, and many are also cutting benefits, kicking people out of ADAP because they cannot cover them. They are not getting enough money to provide assistance, at the same time that growing numbers of HIV/AIDS patients are becoming unemployed, just like the rest of society. So, even as the need is increasing, the funding is drying up.

I often encounter the attitude that HIV/AIDS are manageable, not deadly, ‘like in the old days.’ All you have to do is take some pills, and, yes, you have to do it for life, but at least HIV/AIDS isn’t a death sentence. Er, no. Don’t get me wrong. It is great that treatments for HIV/AIDS are improving and that more medications are available and that more patients are living longer, but we should not forget that there is some serious class privilege behind who gets the most advanced treatments and who does not.

Something a lot of people don’t seem to realise is that these medications are expensive and that not all people can afford them, and those who can cannot necessarily access them regularly. ‘Compliance’ with a drug regimen is a critical part of HIV/AIDS treatment, and when you have people on ADAP going off their medications, it’s not like they can just pay out of pocket until funding comes through again:

First, there was a monthlong wait to see a doctor. By that time, he says, “I had been without my medication for a month and a half, which is bad for a person [with] HIV.”

During that time, the virus started coming back, but he had to get in line behind 18 people who were on Montana’s list. He has slowly — month by month — been working his way to the top of it, even as it continues to grow.

This patient got lucky, comparatively. People kicked in to help and he got back on his medications, with help from a case manager who helped him apply directly to the drug assistance programs offered by most pharmaceutical companies. There are a lot of people relying on ADAP who don’t have this support network, may not be aware of drug assistance programs, have trouble seeing a social worker who could connect them with resources they could use to get their medications. Meanwhile, their viral loads climb while they wait for medication.

Here in California, where the disability rights movement and HIV/AIDS advocacy movement are strong and vocal, our ADAP program is fairly stable. We’ve identified it as a priority that we need to keep funding and we have specifically addressed the fact that patients should not be put on waiting lists, that it’s important to keep patients on their medications and to avoid denying aid to those who need it. Except prisoners, of course; California is cutting ADAP funding for prisoners. As I mentioned in my post on mentally ill youth in US prisons, prisoners are already routinely denied access to the medications they do have. I don’t think we need to go around making it even more difficult for prisoners to receive medical care, do we?

Elsewhere? ADAP is a mess, people are scrambling to prevent people from falling through the cracks, and an already inefficient model for delivering access to health services is getting increasingly more inefficient. Social workers are trying to help the individuals they come into contact with, which is great, but unfortunately it means that the forest is being neglected for the trees, and when you’re spending all your time helping individuals navigate the system so that they can get help, it’s hard to work on designing and implementing more effective policy. Meanwhile, other people have no help at all, and while helping some is better than none, I would rather that we reframe our approach and get services to all.

It’s good to see the media drawing attention to this issue, because I think that people need to digest information about how austerities work in small chunks. The media can’t just say ‘hey y’all, we have a really big problem with kicking poor folks while they’re down’ because it’s too big and people tune out. By profiling individual issues and humanising the results of financial cuts, the media can, perhaps, evoke some awareness and compassion, and get more people questioning austerities and getting angry about them. It’s harder to justify sweeping funding cuts when you have seen the faces of the people those cuts will hurt.

Is that enough, though? A lot of people have spoken out very strongly against austerities, and so far it seems like the government is ignoring the will of the people along with the suggestions of some economists and charging forward with cuts to social services. I think that this is a grave mistake, and it’s also a fatal one for a lot of people in the United States.

I can live through the recession because I have a safety net. But that’s not enough. I want everyone else to live through it too.

I’m Disabled and I Vote

A person in a powerchair wearing a shirt that says 'feel the power of the disability vote.' Photo taken at a protest in California.

(Photo by Flickr user Steve Rhodes, used under a Creative Commons license.)

Here in the United States, we are in the midst of a midterm election cycle, and given that campaigning for Presidential elections basically starts two years in advance, we are about to start ramping up for the 2012 Presidential election, which looks like it is going to be a doozy.

I have voted in every single US election since I reached the age for voting eligibility. I’ve voted on traditional paper ballots, hanging chads and all. I’ve voted on scantron ballots. These days, I vote via permanent absentee ballot:

California Ballot for the June 2010 primary election

I’ve always been mesmerised by the electoral process. Growing up, our house was used as the polling place for the community, and my father always let me take the day off from school to watch the voting. I clamored to turn on the radio for election results like other children screamed for ice cream. I’m somewhat more cynical about elections, voting, and enfranchisement these days.

As we approach the 20th anniversary of the Americans With Disabilities Act (ADA), signed into law on 26 July, 1990, we are still dealing with inaccessible polling places. And we are still dealing with disabled politicians who veto bills designed to increase polling place accessibility:

Last September, the governor [David Paterson of New York], who himself has a disability, shocked many when he vetoed a group of disability bills mostly centered on rights provided through the federal Americans with Disabilities Act, including voting place access.

This article goes on to discuss the voting access aspects of the legislation Paterson vetoed in more detail, pointing out that many of the claims he made about the legislation were false and illustrating that funds are made federally available to address accessibility issues at polling places. There is no reason for a polling place to be inaccessible, ever, and it is horrific that the Governor felt it was appropriate to veto a bill that included, among other things, polling place accessibility.

Voting matters. We have a right to participate in the democratic process, and this right is routinely denied to us. Not just here in the United States. I’m sure many FWD readers remember jady_lady’s post about being disenfranchised in the recent UK election:

It was only whilst walking home with my partner that we compared notes. It appeared that my template had been placed fairly close to the left hand edge of the form, and my partner’s had been nearer the middle of the form. We phoned a friend and asked where the boxes appear on the ballot paper and were told that they are down the right hand side.

It would therefore appear that both our ballot papers are spoilt and we haven’t had a vote in this very important election.

When I was a young child eagerly watching everyone vote, it filled me with a sense that there was some justice in the world. People could be angry, they could be unhappy with the political situation, and they could express themselves at the polls. I remember the first election I voted in vividly. I remember reading my voter’s guide with care and showing up at the polling place precisely at 7:00 AM so I could vote as soon as it was physically possible, I remember being handed my ballot and going into the stall and carefully using the stylus to punch out my vote, I remember slipping my ballot into the protective cover to protect the confidentiality of my vote, handing it to the poll worker and watching her drop it into the lockbox with the other ballots. I remember eagerly watching as results rolled in, looking at the county results and thinking ‘one of these votes was mine.

The thought that anyone would be denied that right and that experience makes me indescribably furious. Actively working to deny people the right to vote is nothing short of repugnant. So is denying people the right to vote in confidentiality; a polling place is not ‘accessible’ if voters are required to disclose their votes to a poll worker to get their ballots cast. It is not ‘accessible’ if the only wheelchair-accessible space to vote is a table in the middle of the room where everyone can see.

An estimated 20% of the population of the United States is disabled. That’s a pretty big percentage of the electorate. Given that we are not actually a hivemind, it’s safe to assume that we have some very diverse views on politics and that those of us who do vote probably vote very differently. Those of us who can’t vote would vote differently as well, if they were given an opportunity to do so. It’s important to make sure that these voices are heard, to ensure that votes are cast not only by people who can walk up the stairs to a polling place, stand at a polling booth, and interact with a touchscreen or paper ballot, but by everyone.

There is absolutely no reason to keep polling places inaccessible, unless, of course, you are afraid of the power of the disability vote.

Bad Behavior, continued: More on School Discipline

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

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

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

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

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

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

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

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

Priority: Share Power with Parents.

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

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

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

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

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

Investigating Disability Hate Crimes in the United Kingdom

The Equality and Human Rights Commission (EHRC) recently announced that it is conducting an inquiry into disability hate crimes, on the basis of research demonstrating that people with disabilities are much more likely to experience hate crimes than nondisabled people. There have been several high profile cases of bullying and abuse leading to deaths in the UK that have attracted public attention in recent years; I see a lot of articles citing the Fiona Pilkington case, where a woman killed herself and her daughter after prolonged inaction on clearly documented abuse.

According to a report  issued by the EHRC (I can only find a .pdf version, unfortunately), disabled persons in Britain are four times more likely to experience violence than other people, and the likelihood of experiencing violence goes up for people with intellectual disabilities and mental illness. Almost half of the people involved in the study reported experiences of abuse. In a statement on the report, the EHRC says:

It is not the disabled person who creates their own oppression. It is others. As Sir Ken Macdonald so eloquently argued in one of his final speeches as Director of Public Prosecutions, we must overcome a prevailing assumption that it is disabled people’s intrinsic vulnerability which explains the risk they face – an assumption unsupported by evidence. At best, this had led to protectionism, constraining rather than expanding the individual freedom and opportunity which greater safety and security should provide. Only by extending the same expectations of safety and security to disabled people as to everyone else can we truly come to address the deficits in our current approach and wake up to the need to act. (source)

The new inquiry is designed to gather more information about harassment and abuse experienced by people with disabilities and what kind of support is being provided when people report it. Poor statistics are maintained on disability hate crimes and the EHRC is also concerned that a lot of abuse is going unreported. There are significant complications when it comes to reporting abuse; what do you do, for example, when your abuser is your caregiver? What do you do when you are not provided with tools for reporting? What do you do when you don’t recognise what is happening as abuse because you haven’t been given information about the dynamics of abuse and harassment and it’s all you’ve ever known? What do you do when the people you are told to report to choose to ignore your reports or claim that there is nothing they can do?

I’m hoping that it will lead to some recommendations designed to combat harassment and abuse, and subsequent action on those recommendations. It’s easy to make statements and write reports about what should be done, but it’s harder to put these things into action. Full integration into society requires being treated like we belong there, and thus far, performance on the part of public servants who are supposed to be ensuring our safety and security has been unimpressive:

Smith [lead commissioner for the inquiry], a wheelchair user, has himself suffered abuse – with “Kripple” daubed over his walls in paint and wooden wedges hammered under his door to prevent it from being opened. “I did call the police, and the first five times it was like, ‘What do you want us to do about it?'” But I did finally get one officer prepared to do something about it and installed a surveillance system. It shows what can happen if the collective denial is challenged.”

Disabled people, says Smith, can literally become “too scared to leave home” because they are “harassed and told to ignore it by everyone else, including public bodies. It’s unacceptable”. (source, emphasis mine)

Smith’s story mirrors the Pilkington case: Repeated reports were made to law enforcement, and nothing was done. Until harassment, sexual assault, abuse, and violence against people with disabilities are treated like the serious crimes that they are, they are going to persist, and they are probably going to grow worse. This requires a fundamental rethinking of the way that disability hate crimes are handled. It requires better training for law enforcement, teachers, social workers, and other people on the front lines who are in a position to intervene.

It requires believing that people with disabilities are human beings.

“Bullying and harassment can all too often escalate into serious hate crimes against disabled people that we have all heard about.

“Harassment in any form is totally unacceptable. Everyone in society has the right to live life in safety and with security.

“For disabled people and for those people with long-term health conditions, safety and security is a right that can’t be taken for granted.” (source)

There is a fundamental lack of recognition in many regions of the world that hate crimes are a problem not just because they involve abuse of individuals, but because they are a reflection of social attitudes. Certain populations are viewed as acceptable targets for abuse by harassers, rapists, bullies, molesters because society has made its indifference to the safety, health, and wellbeing of these populations clear. Inquiries like the one planned by the EHRC are important, and will gather valuable information about patterns of abuse and harassment in the disabled community. They need to be backed up with a genuine movement towards change, a reform of social attitudes, a confrontation of the way that the actions and beliefs of society as a whole contribute to systemic oppression.

Florida Court Ruling: Community-based Services, Not Institutionalisation

In 2007, Florida resident Michele Haddad was involved in a motorcycle accident with a drunk driver. She incurred a spinal cord injury that led to quadriplegia, and lived at home until she lost her caregiver and Medicaid informed her that she would only qualify for the services she needed if she spent 60 days in an institution. Aside from making absolutely no sense, as often seems to be the case with Medicaid bureaucracy, this barrier to accessing care was also highly discriminatory.

Haddad sued, arguing that she would suffer ‘irreparable harm‘ by being compelled to enter a nursing home, and the court agreed. The State of Florida was ordered to provide her with the community-based services she requested and was entitled to. Haddad will be getting a caregiver and staying at home, and we can chalk down another victory for disability rights. This is huge and I am really pleased by the positive outcome in this case. Haddad wanted to stay at home, she should have been allowed to stay at home, and it is heartening to read that the court ruled on the side of justice, bodily autonomy, and independence in this case.

The United States Government was also involved in the case, arguing on Haddad’s side. The Justice Department is currently fighting several discrimination cases, many of which build on the landmark Olmstead vs L. C. case that cleared the courts 11 years ago. Speaking about the Haddad case, Thomas E. Perez, Assistant Attorney General for the Civil Rights Division, said:

In the Olmstead case, the court recognized that the unnecessary segregation of individuals with disabilities stigmatizes those individuals as unworthy of participation in community life. By supporting Ms. Haddad in this case, we seek to ensure that individuals with disabilities can receive services in the most integrated setting appropriate, where they can participate in their communities, interact with individuals who do not have disabilities, and make their own day to day choices. (source)

I’m excited to learn that the Department of Justice is cracking down on discrimination and is specifically selecting cases that will promote full integration into society for people with disabilities. As I discussed a few weeks ago, passing antidiscrimination laws and winning victories in court isn’t enough to put a stop to discrimination and ableism, or to the social attitudes that allow for the dehumanisation and abuse of people with disabilities, but these cases do make a difference, and the direct involvement of the government shows that there is a genuine desire to address disability discrimination and to fight it.

Forced institutionalisation, as almost happened to Michele Haddad, has a long and very sordid history in this country. A common problem that I encounter in discussions about it is that it is not always recognised as such. The Haddad case seems fairly clear-cut: She clearly stated that she wanted to stay at home and she was told that she would lose services if she didn’t enter an institution. That sounds forced to me, and it sounded forced to the court, and most of the people discussing the case seem to agree.

But other cases are less clear. A lot of people with disabilities are not provided with information they could use to make choices independently. They are pressured by family members or care providers. Someone in a situation similar to Haddad’s might not be aware that home care was an option. All it would take is being whisked into an institution from the time of an accident and deprived of access to information suggesting that there are alternate modes of care. We see the same thing with decisions about medical care, where people aren’t provided with information and options, but simply told what to do.

‘Forced’ is a slippery word and it is not uncommon for people who want to deny that forced institutionalisation happens to find ways to weasel out of confronting it. After all, if you don’t say the word, it’s not happening, right? This persistent denial is one of the things that makes it so difficult for us to confront the real-world consequences of ableism. If we can’t get people to talk about the fact that forced institutionalisation happens, we can’t get people to talk about why it happens and we can’t get people to fight it.

Forced institutionalisation is not the only denial of rights and autonomy to people with disabilities that people think of as a thing of the past and believe doesn’t need to be addressed, countered, or fought any more. As a result, when we attempt to have conversations about these very real, very structural, and very present issues, we meet rhetoric like ‘oh, well, that doesn’t happen anymore, right? It sure was sad when it did, though.’

Michele Haddad, and thousands of people with disabilities all over the world, can personally testify that forced institutionalisation is not a thing of the past; here in California, for example, disabled activists are currently protesting cuts to In Home Support Services, a program that is vital for people receiving home care. Those funding cuts will result in institutionalisation for people currently receiving IHSS services.

A conversation

Recently, I was on the commuter train home. I happened to be reading Susan Schweik’s book Ugly Laws: Disability in Public for a research paper. Two middle-aged women sat down opposite me, and one inquired as to what book I was reading.

Me: It’s a book about 20th-century ugly laws in the U.S.

Woman #1: What’re those?

Me: Oh, they were regulations that prevented people with visible disabilities from panhandling in public, but more generally, they also kept people with disabilities out of the public eye.

Woman #2: Wow, that is so interesting! Are you in school?

Me: Yes, I’m reading this for a grad school paper.

Woman #1: You’re lucky you’re in grad school! The great thing about being in school is that you get to learn about things you might otherwise never learn about.

Me: Yeah, I suppose so.

Woman #1: And…why are you interested in that topic?

Me: I’m interested in feminist theory and disability, and how those things intersect with race, gender and class, and other stuff. That’s the short version, anyway.

Woman #1 [After a long pause]: Of course, I didn’t mean to imply that you are disabled or have a deformity

Me: Uh, okay. [Pause] You can’t see it, but I do have chronic pain.

And the conversation sort of stopped after that. For some reason, I suspect that this is not an uncommon occurrence.